Out with the old, in with the new... Happy New Year (almost).
This year brought the biggest change to my life. Mainly finding out that I have the big "C", cancer! My motto has been and will continue to be "It could be worse"... why? Neuroendocrine cancer is usually a slow-growing cancer. I say usually because there are times when it is not slow growing. It could be worse if my cancer was almost any other type and had already spread to my liver (as has mine). I may have had this for 5+ years. I know it has not been more than 12 years due to the CT Scan I had back in 2000, which said my liver was fine. It could have been in my appendix or small intestines at that time but too small to see--I am not sure if my primary was my appendix or small intestines. Another thing I need to ask my doc--not that it really matters. I just want to know.
There are tests that can be done on the primary tumor to determine what, if any, chemo it will/will not respond to. I wish I had known this at the time of my surgery and I would have asked them to send my tumor to Dr. Woltering's group at Ochner Medical in Kenner, LA. I think there is still a chance that I could. I am going to ask my oncologist if this is possible. I think it depends on how much of the tumor is available and viable for testing. Dr. Woltering doesn't even charge for this service. He is an amazing man and doctor.
My wish for 2013.... this is difficult. I wish for good health, answers and treatment. Perhaps I should say answers, treatment, good health! Answers to my questions. Treatment for my liver mets, and then good health! I did take a step forward. I called the surgeon's office that I was told about. His name is Dr. Kim. He is a general surgeon but specializes in liver surgery and is on my insurance. I mentioned him in an earlier post (I think). He has co-authored a paper on cytoreduction surgery for both pancreatic and carcinoid patients.
I didn't know if I should call and see about making an appointment now or wait until after my next scan and appointment with my oncologist. I decided to call to see if he was seeing adult patients as I saw that he is now affiliated with Primary Children's Hospital here in SLC, UT. It was the only "hospital" that showed up on my insurance website. I talked to a nurse and she told me that yes, he does still see adults but that his scheduler was out until after the new year. She took my info and told me she would have them call me. Now I need to decide if I should go ahead and see him or wait. It depends on if he will want new scans before seeing me. If he does, I may just wait. It won't hurt (I don't think). If he doesn't need new scans then I think I'll go see him and take copies of the two I've had. I know I shouldn't worry about what my oncologist will think about me seeing him. We did come up with a "plan" on my last visit in October. I was going to wait until after my next scan and then decide. I can't remember now why we were waiting. I think it was partly because I said I didn't want to have any type of surgery until after the new year. I don't know why I worry about what my onc thinks! I'm sure he wouldn't care one way or the other. I'm not questioning his plan or treatment. I need to grow a backbone! We think that doctors are "Gods" and know everything but they do not. Mine has been more than open to anything I have asked or suggested so I'm sure he'll be cool with me taking matters into my own hands (once again).
I do not yet know what my Octreotide level is. I just called the clinic to see if they had the results yet. It's always "leave a message". Last time she called me back pretty quickly but that was when I was having heart palpitations so I'm not sure when she'll call me back. If they are even in today. This way, if it is low, we can up my dosage of Sandostatin for my next shot on the 8th. My oncologist did mention putting me on the pump as an option (if my levels are low). I'm not sure I want to go that direction yet. I need to do more research on it.
I did get my serotonin level checked again. The OB-GYN that I saw ordered it. It is still quite high at 919. Normal levels are 100-243. My level back in July was 1700+ so it is down but still too high. I think this means my nasty little tumors in my liver are still pumping it out (serotonin), which could also mean I'm not at a high enough dosage of Sandostatin as it is suppose to bind to the receptors on the tumors and stop them from producing the hormones. I wonder if this could also be why I continue to have heart palpitations. The serotonin is also what can cause the heart valve damage so we really need to get this down!
My hope for 2013: Find out if I'm a candidate for liver resection surgery or not. Decide whether or not to do surgery if that is an option. Sir-spheres would be my next best treatment option right now. I think if I can
do something about my liver mets, I would feel better about my future... I still feel like I am in LIMBO. Waiting and watching is just not a good fit for me. I need to be pro-active and fight this disease. I also have that looming option of switching insurance carriers come July 1st. If my current carrier will not approve me having surgery or sir-spheres, then I can switch and try to get approved through a new carrier. There are just no guarantees...
This post has gotten a bit long... I apologize if it seems scattered. My thoughts are jumping all over the place today! I will close for now with Many Blessings for a NEW YEAR and may 2013 be better for everyone!
Monday, December 31, 2012
Wednesday, December 26, 2012
Dr's Appointment and Results!
I met with Dr. Pieper. I loved her! She was awesome. She really took her time with me and wasn't rushed at all. We just talked for probably 30 minutes or so before she examined me. I cried a little. I haven't done that in front of a doctor! Must be the woman thing. She just asked me if I was depressed or stressed and I was like, um, yeah--I have CANCER! Anyway, she was super nice and supportive. We talked about my cancer and what was going on. She was a little concerned with my bleeding issues. it might just be the beginning of menopause but she didn't think so...
She did a biopsy of my uterine lining.. ouch! That hurt like a bitch (sorry). I don't know how long that report will take. She also ordered a bunch of blood work, which has come back (My Health online--love it). The only thing that is now above normal is my creatinine, which is a kidney function indicator. I see now that it has been steadily climbing. I do not know what this means. I guess I will find out if it's anything of concern when she calls me. She also ordered the CA-125, which can be a indicator for Ovarian cancer, but it was in the normal range. Another new test she ordered was a blood clotting factor test (a function of the liver). It is also in the normal range so that is good. It had me a little worried. However, I am still bleeding from the biopsy and I'm not sure that is normal. It should probably not last this long (5 full days).
She also had me go have an ultrasound--it was supposed to be both vaginal and external but the technician didn't want to do the internal (trans-vaginal). He said that I could just tell her it was because of the biopsy but I think he just didn't want to do it. That is the feeling I got. The written report was online yesterday, which said everything was "normal". It didn't mention the ovarian cysts at all! Perhaps it is gone but I wonder if that is why she wanted the trans-vaginal ultrasound. Who knows. Guess I'll find out when I hear from her--she's off this week so I'm sure it'll be next week sometime. I really feel like the ultrasound was a waste. It did show I had a nabothian cyst in my cervix but that's not where the CT scan said it was. These are normal findings in women who have had children but since I haven't had any, who knows? If the ovarian cysts is gone, that is GREAT! I'm just not 100 % sure what to think.... said my left ovary was actually much smaller than the right one and the cyst was supposed to be bigger than the ovary measured. Strange. It must just be gone.
She did a biopsy of my uterine lining.. ouch! That hurt like a bitch (sorry). I don't know how long that report will take. She also ordered a bunch of blood work, which has come back (My Health online--love it). The only thing that is now above normal is my creatinine, which is a kidney function indicator. I see now that it has been steadily climbing. I do not know what this means. I guess I will find out if it's anything of concern when she calls me. She also ordered the CA-125, which can be a indicator for Ovarian cancer, but it was in the normal range. Another new test she ordered was a blood clotting factor test (a function of the liver). It is also in the normal range so that is good. It had me a little worried. However, I am still bleeding from the biopsy and I'm not sure that is normal. It should probably not last this long (5 full days).
She also had me go have an ultrasound--it was supposed to be both vaginal and external but the technician didn't want to do the internal (trans-vaginal). He said that I could just tell her it was because of the biopsy but I think he just didn't want to do it. That is the feeling I got. The written report was online yesterday, which said everything was "normal". It didn't mention the ovarian cysts at all! Perhaps it is gone but I wonder if that is why she wanted the trans-vaginal ultrasound. Who knows. Guess I'll find out when I hear from her--she's off this week so I'm sure it'll be next week sometime. I really feel like the ultrasound was a waste. It did show I had a nabothian cyst in my cervix but that's not where the CT scan said it was. These are normal findings in women who have had children but since I haven't had any, who knows? If the ovarian cysts is gone, that is GREAT! I'm just not 100 % sure what to think.... said my left ovary was actually much smaller than the right one and the cyst was supposed to be bigger than the ovary measured. Strange. It must just be gone.
Wednesday, December 19, 2012
Patient Conference
I've decided to go to the NorCal CarciNET Support Groups patient conference the end of January. This is a 1 day conference sponsored by the Northern California Carcinoid Support Group. I'm really, really excited. 3 top doctors will be giving presentations. This is in San Francisco (a great place to visit). My friend is taking me for my birthday, which is in December. We were going to go to Las Vegas that weekend but when I asked him if he would go to San Francisco instead, he said "sure"... The conference is on Sunday so we'll fly in Friday night and spend Saturday doing all those fun touristy things! Also, one fellow "noid" patient whom I've had contact with through email and FB, lives in San Francisco so she said she'd love to show us around!
Her is the link: http://norcalcarcinet.org/index.php/component/content/article/80-meetings/90-netcon13
I'm still debating on whether or not to call the surgeon I was told about. He is on my insurance. I just don't know if I should "stick to the plan" and wait until I meet with my oncologist again in Feb. It's scheduled for Feb. 5th so I should be having another scan the end of Januray or 1st part of Feb. I'll probably wait so I can talk to him about it more. I read somewhere that liver cytoreduction surgery can stimulate tumor growth since your need to stimulate growth for the liver to regenerate. Wow! I hadn't seen that mentioned anywhere before and now I can't remember where I saw it. I think it was in an article about the pro's and con's... Just another factor to consider in the decision. Of course, it still depends on what my insurance will approve. Argh.
Another fellow Zebra is having major risky surgery today. She was diagnosed in 2008 with mets to her liver. Her primary tumor was never found. Now she has lymph nodes in her chest, between heart and lungs, that have been invaded by tumors and have grown and attached themselves to her vena cava and pulminary artery (I believe). She has gone through radiation to try and shrink these suckers but they've shown little response. She is having trouble breathing so this surgery is pretty much her only option to buy more time. I am thinking and praying for her today and always. She is such a sweet, funny and kind person. Another fellow Zebra was told by her oncologist that this cancer was a "bland" cancer. Try telling that to these patients whose tumors are invading their every organ! I don't think 4 years is "slow-growing"....
I did have a blood test to see if I am on the right dose of Sandostatin. It'll take two to three weeks to get back though. My heart palpitations have not gone away with my latest injection so I doubt that the problem is too low a dose. Going to the OB-GYN this Friday so I'll ask her to run a thyroid panel. Maybe I'll get some answers and find out what she thinks about my ovarian cyst that may not be a cyst!
I will try to post an update next week after my appointment and let you know what I find out, if anything.
Blessing to all...
Namaste
Her is the link: http://norcalcarcinet.org/index.php/component/content/article/80-meetings/90-netcon13
I'm still debating on whether or not to call the surgeon I was told about. He is on my insurance. I just don't know if I should "stick to the plan" and wait until I meet with my oncologist again in Feb. It's scheduled for Feb. 5th so I should be having another scan the end of Januray or 1st part of Feb. I'll probably wait so I can talk to him about it more. I read somewhere that liver cytoreduction surgery can stimulate tumor growth since your need to stimulate growth for the liver to regenerate. Wow! I hadn't seen that mentioned anywhere before and now I can't remember where I saw it. I think it was in an article about the pro's and con's... Just another factor to consider in the decision. Of course, it still depends on what my insurance will approve. Argh.
Another fellow Zebra is having major risky surgery today. She was diagnosed in 2008 with mets to her liver. Her primary tumor was never found. Now she has lymph nodes in her chest, between heart and lungs, that have been invaded by tumors and have grown and attached themselves to her vena cava and pulminary artery (I believe). She has gone through radiation to try and shrink these suckers but they've shown little response. She is having trouble breathing so this surgery is pretty much her only option to buy more time. I am thinking and praying for her today and always. She is such a sweet, funny and kind person. Another fellow Zebra was told by her oncologist that this cancer was a "bland" cancer. Try telling that to these patients whose tumors are invading their every organ! I don't think 4 years is "slow-growing"....
I did have a blood test to see if I am on the right dose of Sandostatin. It'll take two to three weeks to get back though. My heart palpitations have not gone away with my latest injection so I doubt that the problem is too low a dose. Going to the OB-GYN this Friday so I'll ask her to run a thyroid panel. Maybe I'll get some answers and find out what she thinks about my ovarian cyst that may not be a cyst!
I will try to post an update next week after my appointment and let you know what I find out, if anything.
Blessing to all...
Namaste
Wednesday, December 5, 2012
Results from Heart Monitor...finally!
I just got a call from my Oncologist! I was surprised that he called me himself. My palpitations are real (I was worried they would see nothing and think I was just crazy) but not dangerous! Good news! I was worried that if I start to have heart problems I would be unable to have cytoreduction of my liver tumors and/or the sir spheres... Whew.
We discussed possible causes, one of which is my thyroid. I am hypo (underactive) but had it checked last March. He suggested getting it checked again so I will ask the OBGYN on the 21st if she'll run it for me. Also, I mentioned that this could be break-through carcinoid syndrome symptoms as I had these before my diagnosis and that they stopped after starting the Sandostatin LAR shots. He thought it was possible so we're going to check my blood serum level of octreotide (Sandostatin). I have to go in on Tuesday for my shot so we'll do a blood draw right before I get it. Takes a couple of weeks to get results as these go to ISI (Interscience Institute) in California. I should have asked him about sub-q shots for break-through symptoms but I felt I'd kept him on the phone long enough... We'll see if I need it when we get my levels back. At least he's a willing doctor. Not like some who have to fight for every test! At least I know I'm not going to drop from a heart attack!
We discussed possible causes, one of which is my thyroid. I am hypo (underactive) but had it checked last March. He suggested getting it checked again so I will ask the OBGYN on the 21st if she'll run it for me. Also, I mentioned that this could be break-through carcinoid syndrome symptoms as I had these before my diagnosis and that they stopped after starting the Sandostatin LAR shots. He thought it was possible so we're going to check my blood serum level of octreotide (Sandostatin). I have to go in on Tuesday for my shot so we'll do a blood draw right before I get it. Takes a couple of weeks to get results as these go to ISI (Interscience Institute) in California. I should have asked him about sub-q shots for break-through symptoms but I felt I'd kept him on the phone long enough... We'll see if I need it when we get my levels back. At least he's a willing doctor. Not like some who have to fight for every test! At least I know I'm not going to drop from a heart attack!
Tuesday, December 4, 2012
No News is Good News?
I have not heard back from my doctor about the results from my 24 hour heart monitor. It's been almost a week and I've left two messages with them to get the results. I'm not sure what that means.. perhaps they can't find the results!
I'm feeling about the same. Still having heart palpitations and have had some tightness in my chest,which feels like my asthma acting up but I've used my inhaler and have had no change in symptoms.
I'll post when I hear something....
One step closer--The nurse called me and asked me where I dropped off the monitor? At first I thought, Oh no! They lost it... nope. She just wasn't sure if I mailed it in or dropped it off. Um, really? Anyway, she said she would find the report and call me back. This was about two hours ago. I love waiting for results. I know, I know......
I'm feeling about the same. Still having heart palpitations and have had some tightness in my chest,which feels like my asthma acting up but I've used my inhaler and have had no change in symptoms.
I'll post when I hear something....
One step closer--The nurse called me and asked me where I dropped off the monitor? At first I thought, Oh no! They lost it... nope. She just wasn't sure if I mailed it in or dropped it off. Um, really? Anyway, she said she would find the report and call me back. This was about two hours ago. I love waiting for results. I know, I know......
Wednesday, November 28, 2012
Zebra's Everywhere...
I see more and more Zebra attire, knick-knacks, socks, boots, purses, etc. I don't know if it is suddenly popular or if I notice it more since it is the Mascot for Carcinoid Cancer. I posted a pic of these nails on Facebook and got some interesting responses from some of my fellow "noids"...
I hadn't really thought much about it but I guess some don't like being reminded that they have cancer. I can understand their feelings. I don't think about it that way. I feel it is a good way to get the awareness out there about NET/Carcinoid Cancer. We are such a society of visual cues, I think it is a good thing. Just sayin...
I probably would never wear nails like these because I am a more subdued type of person. I'm not flashy, I don't often wear bright colors. I don't like drawing attention to myself. I do think these nails are fabulous though!!! I would try them only I'd do the tips black instead of hot pink!
So when you see ZEBRA's... think of us. Donate. Help with funding research for Neuroendocrine Cancer (NET).
I probably would never wear nails like these because I am a more subdued type of person. I'm not flashy, I don't often wear bright colors. I don't like drawing attention to myself. I do think these nails are fabulous though!!! I would try them only I'd do the tips black instead of hot pink!
So when you see ZEBRA's... think of us. Donate. Help with funding research for Neuroendocrine Cancer (NET).
Heart to Heart
I had some issues last week with my blood pressure. It as just one day. I felt really weird--I know that's not really a "medical" description but it's the best I can give. I had a feeling that it was my blood pressure. I decided to run up to the pharmacy by work because they have one of those blood pressure machines you stick your arm in. My BP was really high! I don't know how accurate those machines are... it was 176 / 101 the first time and 152/ 127 the second time I took it. Waaaaaay high... I didn't know what to do. I thought about calling my doctor but it was right before Thanksgiving and I decided to wait and see how I felt the next day.
One of my co-workers said he had a blood pressure monitor and would bring it in for me to use. He's so great! This is one of those that go on your wrist. Since that day, it's been pretty good. However, I have been having heart palpitations ever since that day. Just like the ones I had before starting the Sandostatin LAR shots. A little bit worse than before if I'm honest. It is usually only when I eat. Which is strange. I decided to call my doctor yesterday and see what they said. They decided to have me go in and get fitted for a heart monitor. I think it's only for 24 hours. I'm going in this morning to get it. Might be interesting. My friend Elle, works at the Heart and Lung Clinic that I'm going to so I sent her a text letting her know I'd be there today if she had time to come say "hi". She said she would so I'm looking forward to seeing her and catching her up on everything. We don't talk much but she's such a sweet person and I really love her. We are trail-riding buddies.
I'll try and get a picture of me all "monitored up" if I can get one that doesn't show too much!
I'm back from getting all "wired" up! Not a big deal. Lots of tape though. It is going to be driving me nuts by the end of the 24 hours... It is a very small unit. Smaller than my cell phone! The wires are long and multiple so they are a little hard to hide. Will try and get a picture....
One of my co-workers said he had a blood pressure monitor and would bring it in for me to use. He's so great! This is one of those that go on your wrist. Since that day, it's been pretty good. However, I have been having heart palpitations ever since that day. Just like the ones I had before starting the Sandostatin LAR shots. A little bit worse than before if I'm honest. It is usually only when I eat. Which is strange. I decided to call my doctor yesterday and see what they said. They decided to have me go in and get fitted for a heart monitor. I think it's only for 24 hours. I'm going in this morning to get it. Might be interesting. My friend Elle, works at the Heart and Lung Clinic that I'm going to so I sent her a text letting her know I'd be there today if she had time to come say "hi". She said she would so I'm looking forward to seeing her and catching her up on everything. We don't talk much but she's such a sweet person and I really love her. We are trail-riding buddies.
I'll try and get a picture of me all "monitored up" if I can get one that doesn't show too much!
I'm back from getting all "wired" up! Not a big deal. Lots of tape though. It is going to be driving me nuts by the end of the 24 hours... It is a very small unit. Smaller than my cell phone! The wires are long and multiple so they are a little hard to hide. Will try and get a picture....
Thursday, November 15, 2012
How Time Flies-Thanksgiving
I went in for my Sandostatin LAR shot on Tuesday. I had a nurse I'd never seen before so I was a little nervous about the shot. She was excellent! Didn't hurt at all. Hurt like hell after--it is hard to explain. It's like you have a big ball of ground glass in your but cheek and it makes your entire leg hurt and not want to work. Mainly walking up stairs is very difficult. It's like you can't lift your leg up. That lasts about two days and then it's just a little sore at the injection site. This nurse actually gave me the shot a little more to the side of my cheek than they have before. It seems each nurse gives it in a slightly different place. Maybe they have their "sweet" favorite spot or something. I was hoping to get the same nurse as the last time. She was so nice and told me that Novartis was coming in the next day to give them a class on giving the injections. Novarits is the maker of Sandostatin LAR. I wanted an "update" on whether they learned anything new! She was there though and said "Hi, you look so nice"... I had on a skirt, which I rarely wear. I'm a pants kind of girl.
I did ask for my pancreastatin results. They couldn't find it at first so after I got my shot, I waited for a few minutes while she tracked it down. At first she told me 111 and I said, no, that is my CgA level... hahaha. Good news though! It is down to 306, which is less than 1/2 of what it was! Normal is <150 so while still high, it is coming down. Of course, some docs totally discount this test if its not done by ISI. ISI is a specialty lab in California that has created special tests for carcinoid cancer. The pancreastatin is very particular to how it is done. My next labs will be drawn at the cancer clinic and sent to ISI. My oncologist was surprised that they were sent through ARUP. It'll mean throwing these first two out the window, but that is ok. I'm still wondering if I shouldn't be having my Serotonin level checked again. I may ask to have that added on when I go in next month. Time is going by so fast....
I still have my moments of despair... I read about all these other patients that have had all kinds of liver surgery and treatments and just wonder why? Why was I not offered ANY treatments at diagnosis? So frustrating to think that my insurance company is dictating my future survival! I try not to think about it too much or it drives me nuts. I know we have a plan and I'm hoping to stick to it. I worry that if my next scan shows no growth, then they will say--you are stable, why do anything???? I read that if you can get 90% of the liver tumors out, your 10 year survival chances are over 80%. That is why I want them out!
On a brighter note, I am going over to the church tomorrow night to help clean. I'm on the cleaning committee. Then Saturday night we are having the family Thanksgiving dinner because no one is going to be around on Thanksgiving Day. We're all heading different places (well, mainly it's my sisters kids who are scattering). My sister Sue, that I live with, and I are going to drive down to St. George to my other sisters house for the entire weekend. We are not going to cook a thanksgiving dinner though. Too much work just for the 4 of us. We'll go out to eat!
I am so Thankful for my family, my friends, my new Zebra friends and that I'm as healthy as I am!
I wish everyone a safe and loving Thanksgiving!
I did ask for my pancreastatin results. They couldn't find it at first so after I got my shot, I waited for a few minutes while she tracked it down. At first she told me 111 and I said, no, that is my CgA level... hahaha. Good news though! It is down to 306, which is less than 1/2 of what it was! Normal is <150 so while still high, it is coming down. Of course, some docs totally discount this test if its not done by ISI. ISI is a specialty lab in California that has created special tests for carcinoid cancer. The pancreastatin is very particular to how it is done. My next labs will be drawn at the cancer clinic and sent to ISI. My oncologist was surprised that they were sent through ARUP. It'll mean throwing these first two out the window, but that is ok. I'm still wondering if I shouldn't be having my Serotonin level checked again. I may ask to have that added on when I go in next month. Time is going by so fast....
I still have my moments of despair... I read about all these other patients that have had all kinds of liver surgery and treatments and just wonder why? Why was I not offered ANY treatments at diagnosis? So frustrating to think that my insurance company is dictating my future survival! I try not to think about it too much or it drives me nuts. I know we have a plan and I'm hoping to stick to it. I worry that if my next scan shows no growth, then they will say--you are stable, why do anything???? I read that if you can get 90% of the liver tumors out, your 10 year survival chances are over 80%. That is why I want them out!
On a brighter note, I am going over to the church tomorrow night to help clean. I'm on the cleaning committee. Then Saturday night we are having the family Thanksgiving dinner because no one is going to be around on Thanksgiving Day. We're all heading different places (well, mainly it's my sisters kids who are scattering). My sister Sue, that I live with, and I are going to drive down to St. George to my other sisters house for the entire weekend. We are not going to cook a thanksgiving dinner though. Too much work just for the 4 of us. We'll go out to eat!
I am so Thankful for my family, my friends, my new Zebra friends and that I'm as healthy as I am!
I wish everyone a safe and loving Thanksgiving!
Saturday, November 10, 2012
Mexico Pictures/NET Cancer Day...
My new hairdo and I'm rockin my Zebra stripes for NET Cancer Day!
Date night tonight so I have to run... We're going to go see Flight with Denzel Washington. I didn't want to see it before flying across the country and over water!
Thursday, November 8, 2012
I'm Baaaaaaaaaack and NET Cancer Day is Here!
Mexico was great. Didn't do a lot , mostly just laid around in the sun and relaxed, which is what i needed the most. I felt pretty good most of the time. I had some bloating and constipation issues but I get that when I travel a lot anyway. I tried not to eat too much for this reason. I did eat plenty and drank a few "Miami Vice's" to boot! Not sure how but I lost a pound. I felt like I gained weight but it was probably just water.
I know I shouldn't worry about my weight. I should eat whatever I want and not worry about it. The truth is, I still care. I like being "thin". I'm 112 lbs and 5' 5". That's not too thin but I know I don't need to lose anymore weight!
This Saturday is NET (Carcinoid) Cancer Day around the world! NET stands for neuroendocrine tumor. We don't get a month yet, only a day and it has been fought for across the USA State-by-State to be officially recognized. Utah is not one of those states recognizing it as of yet. I hope to be more pro-active in the next year and get a support group started and help raise awareness of NET Cancer. That will be another post.
Regarding NET Cancer Day: I've learned that not a lot of cancer organizations lend support for NET cancer research. Most research is privately funded. We need to help raise awareness of this cancer to increase research funds and patient support! If you are interested in learning more, go to http://netcancerday.org/
So on Saturday, wear your zebra print or something black and white to help show your support of NET Cancer!
Bless you all-- I will post some pictures from Mexico when I get them downloaded!
I know I shouldn't worry about my weight. I should eat whatever I want and not worry about it. The truth is, I still care. I like being "thin". I'm 112 lbs and 5' 5". That's not too thin but I know I don't need to lose anymore weight!
This Saturday is NET (Carcinoid) Cancer Day around the world! NET stands for neuroendocrine tumor. We don't get a month yet, only a day and it has been fought for across the USA State-by-State to be officially recognized. Utah is not one of those states recognizing it as of yet. I hope to be more pro-active in the next year and get a support group started and help raise awareness of NET Cancer. That will be another post.
Regarding NET Cancer Day: I've learned that not a lot of cancer organizations lend support for NET cancer research. Most research is privately funded. We need to help raise awareness of this cancer to increase research funds and patient support! If you are interested in learning more, go to http://netcancerday.org/
So on Saturday, wear your zebra print or something black and white to help show your support of NET Cancer!
Bless you all-- I will post some pictures from Mexico when I get them downloaded!
Tuesday, October 30, 2012
Vacation Time & Doctor's Visit
I got a call from Dr. Pieper's office yesterday. She's agreed to see me! Woot woot! My appointment isn't until December 21st though, however, I'm on the cancellation list so if someone cancels, I may get in earlier. I'm not worried about waiting until December though. I just want to find out if this ovarian cyst is really just a cyst...
Off to Mexico in the morning! I will post about my vaca next week.
Hugs to all....
Off to Mexico in the morning! I will post about my vaca next week.
Hugs to all....
Monday, October 29, 2012
I'm heading to Mexico in two days! I'm going to a resort just outside of Cancun. I'm so excited to get away! I just need some major relaxation...
I called my nurse practitioners office last week to follow-up on my ovarian cyst and fibroid issues. She's no longer there... might explain why I never heard from her after my diagnosis. I really thought she would have called me and when she didn't, I honestly felt really bad. Since she's gone, the girl I spoke with said they would just refer me to an OB-GYN, which is what I'm sure Julie (NP) would have done anyway. They gave me the number for the OB-GYN Center at IMC (the hospital that I had surgery at and usually go to for mammograms, etc.) I called and the scheduler lady who answered was very, very nice. I told her what was going on and she suggested that I see Dr. Pieper. I'm still waiting to hear back from them on whether this Dr. will take me on as a patient. I guess she doesn't usually take new patients but with my "history" she might see me. I'm hoping to hear from them before I leave on Wednesday.
I saw that my Pancreastatin blood test was finally in but it doesn't show the results on-line. I did call the cancer center to get my results but have not heard back from them. This was last Monday! I guess I'll call again today. I just want to know if it went down or not It was 667 and the normal is <150.
I met my first real fellow Carcinoid survivor! I went to lunch last Friday with my long-time friend Marc, who also knows a man with Carcinoid. He met us for lunch. He is 67 now and retired. He was diagnosed 15 years ago and has had 3 heart surgeries. All that serotonin that these tumors can emit, damage the valves of the heart. He was diagnosed before Sandostatin was on the market so he had a lot of damage. He's been on Sando now for 8 years and is doing well. He's had radio frequency ablation to some tumors in his liver and he said he has a couple in him abdomen. His big concern for me was my Serotonin level and that I have a Cardiologist. The haven't checked my level since right after my surgery and it was very high, 1700+. Normal is below 450 I think... might be even less. I think I'll ask to have it checked when I go back in for my next round of blood tests.
So off to Mexico! I will try and post some pictures when I return.
I called my nurse practitioners office last week to follow-up on my ovarian cyst and fibroid issues. She's no longer there... might explain why I never heard from her after my diagnosis. I really thought she would have called me and when she didn't, I honestly felt really bad. Since she's gone, the girl I spoke with said they would just refer me to an OB-GYN, which is what I'm sure Julie (NP) would have done anyway. They gave me the number for the OB-GYN Center at IMC (the hospital that I had surgery at and usually go to for mammograms, etc.) I called and the scheduler lady who answered was very, very nice. I told her what was going on and she suggested that I see Dr. Pieper. I'm still waiting to hear back from them on whether this Dr. will take me on as a patient. I guess she doesn't usually take new patients but with my "history" she might see me. I'm hoping to hear from them before I leave on Wednesday.
I saw that my Pancreastatin blood test was finally in but it doesn't show the results on-line. I did call the cancer center to get my results but have not heard back from them. This was last Monday! I guess I'll call again today. I just want to know if it went down or not It was 667 and the normal is <150.
I met my first real fellow Carcinoid survivor! I went to lunch last Friday with my long-time friend Marc, who also knows a man with Carcinoid. He met us for lunch. He is 67 now and retired. He was diagnosed 15 years ago and has had 3 heart surgeries. All that serotonin that these tumors can emit, damage the valves of the heart. He was diagnosed before Sandostatin was on the market so he had a lot of damage. He's been on Sando now for 8 years and is doing well. He's had radio frequency ablation to some tumors in his liver and he said he has a couple in him abdomen. His big concern for me was my Serotonin level and that I have a Cardiologist. The haven't checked my level since right after my surgery and it was very high, 1700+. Normal is below 450 I think... might be even less. I think I'll ask to have it checked when I go back in for my next round of blood tests.
So off to Mexico! I will try and post some pictures when I return.
Saturday, October 20, 2012
Prayers for Sunny!
Today I read a blog from a fellow Carcinoid Cancer Survivor. She is a true warrior. Her name is Sunny and she has a blog and a book chronicling her fight to survive. She's asking for all our prayers at this time. Her cancer seems to be spreading quickly. I was very distressed when reading her new post. She has been through so much. I prayer for a miracle to help her continue her battle. My prayers go out to her, her boys and her husband.
There are several good "blogs" out there and I will try to add the links to them here on my blog.
Prayers to all.
There are several good "blogs" out there and I will try to add the links to them here on my blog.
Prayers to all.
Thursday, October 18, 2012
Surgery vs. Y-90 Sir Spheres
I need to update you on what Dr. B. the liver surgeon, told me! I met with him last month. He felt that the left lobe of my liver was enough to "support" me--keep my alive while my liver regenerates. I do have 3 tumors in the left lobe but he could do radio frequency ablation (RFA) on them. It is a small probe that uses heat to "cook" the tumor(s). Whew, sounds like a MAJOR surgery and I know it has risks... my biggest problem is that my insurance won't pay him, not even out-of-network.
I did have my blood work done and a CT Scan last week. Blood work is good. My liver function is still 100%. My Chromogranin A (CgA) went down from 249 to 111. CgA is a tumor marker and can go up with tumor growth. We also did a Pancreastatin blood test, which is an even better tumor marker for the liver but it hasn't come back yet.
Even though my CgA went down, my CT Scan showed a small increase in all the tumors in my liver. Not a lot, a few millimeters. I'm concerned that I had any growth at all since this is supposed to be a slow-growing cancer and its only been four months! I was a bit surprised and I am worried that this cancer is going to be more aggressive than thought.
I met with my oncologist this past Tuesday. I was pretty nervous since I had no idea how he would feel about me having gone to see Dr. Belnap! I shouldn't have been... he was very positive about it and seemed pleased that Dr. B thought I was a good candidate for surgery. He knows, however, that my insurance won't pay for him to do the surgery. He said we had a few options. He can send me for a consultation with another liver surgeon in-network and then if they don't want to operate, I can appeal my insurance's denial and I can fight them to get Dr. B approved to do it. There is a chance they may just want me to go to someone else, out-of-state, like Dr. Pommier in Portland who is a Carcinoid Specialist. I would love to go see him but don't really want to have surgery out-of-state. I know a lot of us "noids" have too though so I would do it if it came down to it. My other option, and the one I am leaning towards, is to do the sir-spheres first, then surgery later. Sir-spheres are radioactive beads that they insert directly into your liver tumors through an artery in your groin. It's sort of like angioplasty. They usually do it in three steps. First, they map you. They insert the wire and a dye which shows them how your liver is wired! Just to make sure they can get to the tumors and that you don't have any physiology that would prevent the procedure. The second step is actually inserting the radioacive beads to 1/2 of your liver. Then you wait--I'm not sure how long but it's weeks. Third, they go in and do the other half. I know of several fellow patients who have had this done. Some have tumor shrinkage and even tumor necrosis (death). It can also just stabilize them from growing.
The plan: I am going to wait until after my next scan to do anything. We decided to see what my tumors do over the next four months. I'm not 100% sure this is the best plan. Part of me wants to be more aggressive right now and the other part says, wait a little while longer and see if the Sandostatin stops the tumors from growing. Plus, if I wait, I'll be closer to July 1st when I can change my insurance to another carrier who would be more likely to allow Dr. B to operate (if that's what I want). There is, of course, no guarantee that a new insurance company will approve anything!
I do feel better knowing we have a "plan". My Oncologist seemed very positive and was impressed with how much I knew. We talked about specialists and clinical trials, PRRT, Ga-68 scan, other treatments, etc. He was like, "wow" you know so much! It is definitely true that you have to be your own "advocate" with this cancer. So many, many doctors don't know anything about Carcinoid. I think the word is spreading and we have to keep on getting it out there! I still feel very lucky that all my doctors have known about Carcinoid and how to treat it. From the Gastroenterologist who did my colonoscopy, my surgeon and my Oncologist, they all know a lot about it.
I will try to post more often. I always have a brain-cramp when I try to remember how to get to the right account! Stay well, be happy and live life to the fullest!
I did have my blood work done and a CT Scan last week. Blood work is good. My liver function is still 100%. My Chromogranin A (CgA) went down from 249 to 111. CgA is a tumor marker and can go up with tumor growth. We also did a Pancreastatin blood test, which is an even better tumor marker for the liver but it hasn't come back yet.
Even though my CgA went down, my CT Scan showed a small increase in all the tumors in my liver. Not a lot, a few millimeters. I'm concerned that I had any growth at all since this is supposed to be a slow-growing cancer and its only been four months! I was a bit surprised and I am worried that this cancer is going to be more aggressive than thought.
I met with my oncologist this past Tuesday. I was pretty nervous since I had no idea how he would feel about me having gone to see Dr. Belnap! I shouldn't have been... he was very positive about it and seemed pleased that Dr. B thought I was a good candidate for surgery. He knows, however, that my insurance won't pay for him to do the surgery. He said we had a few options. He can send me for a consultation with another liver surgeon in-network and then if they don't want to operate, I can appeal my insurance's denial and I can fight them to get Dr. B approved to do it. There is a chance they may just want me to go to someone else, out-of-state, like Dr. Pommier in Portland who is a Carcinoid Specialist. I would love to go see him but don't really want to have surgery out-of-state. I know a lot of us "noids" have too though so I would do it if it came down to it. My other option, and the one I am leaning towards, is to do the sir-spheres first, then surgery later. Sir-spheres are radioactive beads that they insert directly into your liver tumors through an artery in your groin. It's sort of like angioplasty. They usually do it in three steps. First, they map you. They insert the wire and a dye which shows them how your liver is wired! Just to make sure they can get to the tumors and that you don't have any physiology that would prevent the procedure. The second step is actually inserting the radioacive beads to 1/2 of your liver. Then you wait--I'm not sure how long but it's weeks. Third, they go in and do the other half. I know of several fellow patients who have had this done. Some have tumor shrinkage and even tumor necrosis (death). It can also just stabilize them from growing.
The plan: I am going to wait until after my next scan to do anything. We decided to see what my tumors do over the next four months. I'm not 100% sure this is the best plan. Part of me wants to be more aggressive right now and the other part says, wait a little while longer and see if the Sandostatin stops the tumors from growing. Plus, if I wait, I'll be closer to July 1st when I can change my insurance to another carrier who would be more likely to allow Dr. B to operate (if that's what I want). There is, of course, no guarantee that a new insurance company will approve anything!
I will try to post more often. I always have a brain-cramp when I try to remember how to get to the right account! Stay well, be happy and live life to the fullest!
Friday, September 14, 2012
TGIF and Insurance Issues
I am so glad it's Friday! Tired this week. I think I've been staying up too late reading. Also, my horse trainer is at a show so I've been going out to the barn most nights--which is OK because I want to spend more time riding anyway...
I received a call from Cara, Dr. Balnap's physician assistant (see earlier post about liver surgeon) she said my insurance said that they consider him as "exclusive" but I think she meant to say "excluded".... They will only pay him as an assistant surgeon at 20% and he wouldn't be an assistant surgeon! So no 60% for out-of-network coverage. I didn't know an insurance company could "black-ball" a surgeon... I'm not surprised since Select Med is part of IMC and that is where he started the liver transplant program. I'm still going to see him on Wednesday. I just want to know what he thinks.. It did make me angry for a minute and then I got all frustrated with this stupid CANCER! Why does everything have to be so difficult? Why can't there be a "standard" treatment protocol? OK. Enough of the negative! I feel better now.
Here's my plan... go see Bruce B. on Monday (oncologists P.A.). Talk to him about my options. See what he thinks about Belnap and ask him about seeing a "specialist". I may even talk to their Patient Advocate to see if they can help me with getting the insurance to approve a specialist. I'm thinking Dr. Liu at Vanderbilt University in Nashville. They have this scan called a Gallium 68 PET that is not offered everywhere as I think it's still experimental. It shows much clearer images of tumors, etc. Better than the octreoscan.
Go see Dr. Belnap on Wednesday--get his opinion.
Then I'll probably just be waiting until next month to get my blood work done and follow-up scan in November. If scan shows any progression of tumor growth or new tumors, go see a specialist ASAP. If everything is stable.... wait and worry!
Hope everyone is well and have a great weekend!
I received a call from Cara, Dr. Balnap's physician assistant (see earlier post about liver surgeon) she said my insurance said that they consider him as "exclusive" but I think she meant to say "excluded".... They will only pay him as an assistant surgeon at 20% and he wouldn't be an assistant surgeon! So no 60% for out-of-network coverage. I didn't know an insurance company could "black-ball" a surgeon... I'm not surprised since Select Med is part of IMC and that is where he started the liver transplant program. I'm still going to see him on Wednesday. I just want to know what he thinks.. It did make me angry for a minute and then I got all frustrated with this stupid CANCER! Why does everything have to be so difficult? Why can't there be a "standard" treatment protocol? OK. Enough of the negative! I feel better now.
Here's my plan... go see Bruce B. on Monday (oncologists P.A.). Talk to him about my options. See what he thinks about Belnap and ask him about seeing a "specialist". I may even talk to their Patient Advocate to see if they can help me with getting the insurance to approve a specialist. I'm thinking Dr. Liu at Vanderbilt University in Nashville. They have this scan called a Gallium 68 PET that is not offered everywhere as I think it's still experimental. It shows much clearer images of tumors, etc. Better than the octreoscan.
Go see Dr. Belnap on Wednesday--get his opinion.
Then I'll probably just be waiting until next month to get my blood work done and follow-up scan in November. If scan shows any progression of tumor growth or new tumors, go see a specialist ASAP. If everything is stable.... wait and worry!
Hope everyone is well and have a great weekend!
Wednesday, September 12, 2012
Insurance
I just check my insurance and I do have out-of-network coverage. $1,500 deductible and then they pay 60%. Not great but at least it's something... if I decide to have surgery. I can also appeal if they will not cover it, if I can prove it's necessary. Many options...
Liver Surgery Possible?
Sorry it has been so long since my last post. There a two reasons. One, I haven't had anything to update. That is why this cancer is called "wait and watch" but I call the "wait and worry". The 2nd reason is I couldn't figure out how to! I was signed in under the wrong email address and it wouldn't let me create a new post! Hahaha. I'm not very technical. I did figure it out--obviously.
I do have something to update. I went on a trail ride with my friend Ellyne. She works at the hospital where I had my surgery. I was giving her the "update" and I told her how they said there wasn't a surgeon in Utah who would remove my liver tumors. She said she thought she new of one who had actually started the liver transplant program at Intermountain Medical Center but that they had gotten rid of him because he was a "cowboy". By that, I think she meant that he was a bit of a wild card and perhaps unorthodox. She told me his name so I planned on looking him up to see where he was practicing now. I procrastinated on that and hadn't looked into him yet when I ran into another acquaintance who happens to be an anesthesiologist. I'd wanted to talk to her since my diagnosis but hadn't run into her. She has a horse at the stable where I keep my Abbie. Anyway, I saw her so I told her what I'd been through. She told me that she worked with a surgeon who did liver surgery all the time! It was his specialty. Guess who it is? The same surgeon. Dr. Legrand Belnap is his name. She asked me for my cell so I gave it to her. She was going to talk to him for me but said he was on vacation this week.
I went home to look him up and of course, he works out of another hospital that is not on my insurance plan. Sigh... I figured he wouldn't be since NO ONE had mentioned him to me!
I received a text from Julie, the anesthesiologist, yesterday and she said his PA was going to call me. Wow. it was only about an hour later when I got the call. Very nice lady named Cara. She said he did debulking and resection surgery on Carcinoid patients all the time! He gets referrals from surrounding states and even from my oncologist! I told her he (Dr. Belnap) wasn't on my insurance. She said they could try and get it approved but that my insurance company probably wouldn't OK it. I ask her to try to get them to for a 2nd opinion-type appointment. She set me an appointment up for next Wednesday at 7pm! Late clinic hours and he wants to see me last so we have plenty of time. I have to go pick up my CD of the CT Scan I had done in June today so he can see it. I'm a little nervous about it but I just want to see what he says. I know the insurance won't approve it but I have a couple of options. I can appeal their decision with letters from doctors stating the facts--that removing 70% to 90% of the tumors can increase life expectancy by 10 years! I can also wait until June and change my insurance plan for the new plan year starting July 1, 2013. I could then have surgery.
I'm not really sure what I should do. Should I have surgery when I'm feeling good, have no symptoms, liver function is normal? Should I wait until things progress (if they haven't already)? I will be asking many questions of Dr. Belnap I am sure. I also have an appointment this Monday with my Oncologists PA, Bruce. He is very smart and I have a bunch of questions for him!
I will give you an update after my appointment on Monday.
I do have something to update. I went on a trail ride with my friend Ellyne. She works at the hospital where I had my surgery. I was giving her the "update" and I told her how they said there wasn't a surgeon in Utah who would remove my liver tumors. She said she thought she new of one who had actually started the liver transplant program at Intermountain Medical Center but that they had gotten rid of him because he was a "cowboy". By that, I think she meant that he was a bit of a wild card and perhaps unorthodox. She told me his name so I planned on looking him up to see where he was practicing now. I procrastinated on that and hadn't looked into him yet when I ran into another acquaintance who happens to be an anesthesiologist. I'd wanted to talk to her since my diagnosis but hadn't run into her. She has a horse at the stable where I keep my Abbie. Anyway, I saw her so I told her what I'd been through. She told me that she worked with a surgeon who did liver surgery all the time! It was his specialty. Guess who it is? The same surgeon. Dr. Legrand Belnap is his name. She asked me for my cell so I gave it to her. She was going to talk to him for me but said he was on vacation this week.
I went home to look him up and of course, he works out of another hospital that is not on my insurance plan. Sigh... I figured he wouldn't be since NO ONE had mentioned him to me!
I received a text from Julie, the anesthesiologist, yesterday and she said his PA was going to call me. Wow. it was only about an hour later when I got the call. Very nice lady named Cara. She said he did debulking and resection surgery on Carcinoid patients all the time! He gets referrals from surrounding states and even from my oncologist! I told her he (Dr. Belnap) wasn't on my insurance. She said they could try and get it approved but that my insurance company probably wouldn't OK it. I ask her to try to get them to for a 2nd opinion-type appointment. She set me an appointment up for next Wednesday at 7pm! Late clinic hours and he wants to see me last so we have plenty of time. I have to go pick up my CD of the CT Scan I had done in June today so he can see it. I'm a little nervous about it but I just want to see what he says. I know the insurance won't approve it but I have a couple of options. I can appeal their decision with letters from doctors stating the facts--that removing 70% to 90% of the tumors can increase life expectancy by 10 years! I can also wait until June and change my insurance plan for the new plan year starting July 1, 2013. I could then have surgery.
I'm not really sure what I should do. Should I have surgery when I'm feeling good, have no symptoms, liver function is normal? Should I wait until things progress (if they haven't already)? I will be asking many questions of Dr. Belnap I am sure. I also have an appointment this Monday with my Oncologists PA, Bruce. He is very smart and I have a bunch of questions for him!
I will give you an update after my appointment on Monday.
Thursday, August 9, 2012
A quick update... I'm very happy to say that I've had no bad side effects from the Sandostatin LAR shot! My oncologist warned me that some people do and that they can be quite bad... I did have a headache for about 3 days but it went away. My symptoms have also abated.. diarrhea and heart palpitations! So it is working as intended. Now just hoping it stops my tumors from growing or spreading and with time, might evens shrink them! Next shot is scheduled for the 20th...
Friday, August 3, 2012
Cost of Treatment!
Wow. I called my insurance company to see how much the monthly injection of Sandostatin LAR was. I about fell off my chair! My oncologist told me it was $10,000 per month. They charged $17,000! This is per month, every month for the rest of my life (or for how ever long it works). CRAZY... also, thank god for insurance and no "lifetime maximum"....
Thursday, August 2, 2012
To date...
My diagnosis....
I thought I'd start a "blog" to let my friends and family know about my newly diagnosed cancer! I'm not much of a writer so I ask for your forgiveness in advance.
I had my first screening colonoscopy on June 14th. I didn't expect it to be more than routine. When I woke up, I was in a great deal of pain and very nauseated. That passed with some medication and I got dressed. When the doctor came in, he sat down and told me they had found a large tumor in my small intestine, which was too big for him to remove. He said he'd biopsied it but didn't think it looked like "cancer". I should have asked him "why not" but I didn't. He then told me he wanted me to go have a CAT Scan and some blood work, which they scheduled for the very next day.
The CAT Scan went fine. I did have to drink contrast so that was fun after drinking the horrible prep for the colonoscopy the two days before! Ick... If you've never had a CAT Scan with contrast, they also give you an injection just before they start which makes you "flush" and it feels like you pee your pants! Luckily, I had one years ago and was ready for it! It's a very strange feeling.
Monday the doctor called me back and said "I'm so sorry but you do have cancer and it's spread to your liver". Well, to say the least, I was devastated. Those of you who know me, know that my mom, Norma, died from liver cancer very quickly (we're sure it was from her colon cancer but they could never biopsy it). He told me it was Carcinoid, which is rare but not much else. I did the Internet search that afternoon and read a lot. Yes it's rare and it's slow growing (usually). These tumors produce hormones, mainly serotonin, which can wreck havoc with your other organs, including your heart. I did have an echo cardiogram and my heart is just fine :)... the hormones produced by these tumors can cause what is known as "carcinoid syndrome". I had only been having one of the symptoms, diarrhea, which is probably why I hadn't gone to the doctor earlier-- I thought it was from not having a gallbladder--and we're still not sure.
They had already set up an appointment for me with a surgeon the day I had the colonoscopy. It was scheduled for Tuesday, June 19th. Things were moving very quickly. I'm not sure if it was the fact that I'd told them my insurance was changing on July 1st or the fact that I had CANCER! Either way, I was glad.
To make a long story short, I had surgery on July 2nd (yes, after fight with new insurance company for approval but that is another blog). Surgery went very well. They removed part of my colon, cecum, ilium (small intestines) and appendix. They would have removed my gallbladder as well since the treatment causes gallstones but I had mine removed years ago. I actually had 11 tumors in all. 10 in the small intestines ( I think they were all grown together) and one in my appendix. 11 of 13 lymph nodes were also positive for cancer. They also biopsied some in my liver. All came back as expected, which is technically now called well-differentiated neuroendocrine carcinoma. That's a mouth full so I'm sticking to Carcinoid! Same thing...
Treatment..... I'm seeing a great oncologist at Utah Cancer Specialists, Dr. Jonathan Whizenant. While not a Carcinoid Specialist, (there isn't one in Utah) he is very knowledgeable about it and treats most of the "Noids" here. This cancer doesn't really respond to general chemo since it is slow-growing and most chemo targets (kills) fast-growing cells so at least I don't have that to look forward to! The treatment right now is a monthly long acting shot called Sandostatin... It last 28 days and blocks the tumors from producing those pesky hormones that I mentioned earlier. It also has been shown to slow and even stop tumor growth in some patients. I had my first shot on July 23rd. I haven't had many side effects. Some people have worsening diarrhea, abdominal pain, nausea, etc. I had a very sore butt and leg that night but it was fine the next day. I did have a headache for a couple of days but it's gone now. I'm hoping I don't get anything worse. My doctor said it can be immediate or take a couple of weeks.
My next shot is scheduled for August 20th. The hardest part right now is waiting. We will re-scan and do the blood work in October or November. Doc said November but I'm not sure I want to wait that long! I know a month probably won't make a difference but the waiting right now is the hardest thing ever!
Next steps... some people do great on Sandostatin for years. they have no tumor progression or spread of disease. If things progress, there are other treatment options available. Right now, I'm hoping the shots work and this will be more like managing a auto-immune type disease--almost like diabetes. There are also new advancements in treatments being made all the time. There are some great clinical trials going on now in Europe. Who knows what the next few years might bring! My goal is to stay positive, take good care of myself and try not to worry too much!
If you would like to read more about this type of cancer go to www.carcinoid.org
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