I was recently contact by Novartis to see if I was interested in communicating more with them on being a patient advocate and identifying what (we) patients need. I will keep you updated as to what happens with this new exciting opportunity!
I received an email from them last week with some resources they (Novartis) has developed to help educate patients about NET. I wanted to share this with you.
The first is NET Alliance
The second is Carcinoid.com, it even has a "symptom assessor", which I think is fabulous!
Check out these two great resources for NET cancer patients and their caregivers.
A quick update on me: I'm still doing well, however, the last few weeks I've been very nauseated. It comes and goes but has been a companion of sorts everyday. I have no idea whats up. I do have an appointment with my GP this week so I'll ask her about it. Other than than that, I'm really well.
Take care.
Monday, November 16, 2015
Thursday, November 5, 2015
Melissa Mathison, Creator of E.T., dies of Neuroendocrine Cancer!
I just received an email that the writer of E.T., Melissa Mathison, died of NET cancer. The article doesn't say much about her diagnosis so it was a little disappointing to me. She had an incredible career, which included an Oscar nomination for E.T. She also wrote The Black Stallion, one of my favorite movies!
If you are interested, here is a link to the article.
Melissa Mathison dies at 65
If you are interested, here is a link to the article.
Melissa Mathison dies at 65
Tuesday, November 3, 2015
NET Cancer Day is November 10th!
and I get my butt dart! I mean, my Sandostatin shot. On NET Cancer Day. Yeah. It isn't really a butt dart anymore. With the new formula, it is a little less painful although I have had more pain after the shot than I was having before. I don't really think it is the formula though. I think it is just how it is. Sometimes it hurts and sometimes it doesn't.
Sorry I have not posted. I've had "technical" difficulties and have not been able to access this blog. I'm not sure how I got in tonight. I just kept trying and it finally popped up. Weird.
Soooo, with NET Cancer Day approaching. I do want to give a shout-out to raising awareness for NET/Carcinoid Cancer. I really want to start being more or an advocate for us Zebras and help raise awareness of this rare cancer. I am going to try and do much better with the blogging...
Please check out the Carcinoid Cancer Foundation www.carcinoid.org and if you are on Facebook, they have a zebra striped background that you can overlay onto your profile picture. It is very cool. I did mine.
I wanted to add that one of my concerns about being "open" about advocating for NET cancer is that my work does not know about my diagnosis. There are a few people who do but not my boss or the directors that I support. I also work for an insurance company so it can be a little awkward. I figured I wouldn't ever say anything until I had to get additional treatment. I may "come out" but I haven't decided when.
My next scheduled blood work isn't until the first part of January. I have a scan scheduled for the end of January and then meet with my new oncologist the first week in February.
Sorry I have not posted. I've had "technical" difficulties and have not been able to access this blog. I'm not sure how I got in tonight. I just kept trying and it finally popped up. Weird.
Soooo, with NET Cancer Day approaching. I do want to give a shout-out to raising awareness for NET/Carcinoid Cancer. I really want to start being more or an advocate for us Zebras and help raise awareness of this rare cancer. I am going to try and do much better with the blogging...
Please check out the Carcinoid Cancer Foundation www.carcinoid.org and if you are on Facebook, they have a zebra striped background that you can overlay onto your profile picture. It is very cool. I did mine.
I wanted to add that one of my concerns about being "open" about advocating for NET cancer is that my work does not know about my diagnosis. There are a few people who do but not my boss or the directors that I support. I also work for an insurance company so it can be a little awkward. I figured I wouldn't ever say anything until I had to get additional treatment. I may "come out" but I haven't decided when.
My next scheduled blood work isn't until the first part of January. I have a scan scheduled for the end of January and then meet with my new oncologist the first week in February.
Monday, September 21, 2015
Changing of the Guard
I met with my current oncologist for possibly the last time last week. He's moving to another center and will be there by next spring (taking some time off apparently). I have had mixed feelings about him leaving me (not really me but the practice). I feel somewhat abandoned! He's the only oncologist I've seen since being diagnosed three years ago. He sees most of the carcinoid patients in Utah and is very knowledgeable about it. He's been easy to talk to, supportive, and I don't usually wait very long to see him. At our last visit, he did tell me that he would be more than happy to see me at his new place, which it Huntsman Cancer Institute. Recently designated as a Center of Excellence (and it really is). Why wouldn't I want to go there?
The main reason I don't want to go to Huntsman is convenience. I know that is not a very good reason but with my current work location, I am minutes away from my current cancer clinic. I can go in after work to get my shot. I rarely have to leave work early or take time off to go in. If I were to move my care to Huntsman, I may not have to leave early to go get my shot but the drive home afterwards could be brutal. It's right by the main Hospital and campus of the University of Utah so you get a lot of traffic after 5pm One day, I was at the hospital for a work meeting, which ended at 5pm. It took me TWO hours to get home! Also, no one at works knows about my cancer (there are a couple of people but not my supervisor) so I don't want to start taking a lot of time off.
What my oncologist and I decided was to wait and see. Where have we all heard that before! I told him I'd try another oncologist and see how it went. I'm going to see the onc. who the president of our support group sees. I've heard he's good but he gets waaaaaaaaay behind in seeing patients because he spends so much time with each (which can be a good thing). My first appointment will be in February at 11:30am. I think I'll take the entire day off just in case!
We also discussed my next scan. I was surprised to hear him (my onc) say that he is now leaning more towards MRI's for the liver than CT Scans. WHAT? Now you say that? I believe it was last year when I asked about an MRI over CTs. He said, oh well it's much harder to read an MRI and since you've had CTs, it would be like comparing apples to oranges. Well yes but they are better for imaging the liver! One of the things I've always liked about him is that he's willing to let me decide. I decided to go with a CT scan for now. Since I'll be seeing a new oncologist, we'll have something to compare. I am getting a triple phase CT. usually, I just get normal ones (whatever that may be). I'm planning on asking for MRIs going forward.
If I decide to go to Huntsman, I'll go in August. He'll have had time to settle in a bit. I've also said that if I have progression, I would go up there anyway. They are a research facility and would have more possible clinical trials that I could try to get into.
My blood work was all good! I don't think my pancreastatin is back yet. My CgA was 4 (0-5 range). Last time it was 3 so up a point but that is not a big deal. Normal is normal.
The main reason I don't want to go to Huntsman is convenience. I know that is not a very good reason but with my current work location, I am minutes away from my current cancer clinic. I can go in after work to get my shot. I rarely have to leave work early or take time off to go in. If I were to move my care to Huntsman, I may not have to leave early to go get my shot but the drive home afterwards could be brutal. It's right by the main Hospital and campus of the University of Utah so you get a lot of traffic after 5pm One day, I was at the hospital for a work meeting, which ended at 5pm. It took me TWO hours to get home! Also, no one at works knows about my cancer (there are a couple of people but not my supervisor) so I don't want to start taking a lot of time off.
What my oncologist and I decided was to wait and see. Where have we all heard that before! I told him I'd try another oncologist and see how it went. I'm going to see the onc. who the president of our support group sees. I've heard he's good but he gets waaaaaaaaay behind in seeing patients because he spends so much time with each (which can be a good thing). My first appointment will be in February at 11:30am. I think I'll take the entire day off just in case!
We also discussed my next scan. I was surprised to hear him (my onc) say that he is now leaning more towards MRI's for the liver than CT Scans. WHAT? Now you say that? I believe it was last year when I asked about an MRI over CTs. He said, oh well it's much harder to read an MRI and since you've had CTs, it would be like comparing apples to oranges. Well yes but they are better for imaging the liver! One of the things I've always liked about him is that he's willing to let me decide. I decided to go with a CT scan for now. Since I'll be seeing a new oncologist, we'll have something to compare. I am getting a triple phase CT. usually, I just get normal ones (whatever that may be). I'm planning on asking for MRIs going forward.
If I decide to go to Huntsman, I'll go in August. He'll have had time to settle in a bit. I've also said that if I have progression, I would go up there anyway. They are a research facility and would have more possible clinical trials that I could try to get into.
My blood work was all good! I don't think my pancreastatin is back yet. My CgA was 4 (0-5 range). Last time it was 3 so up a point but that is not a big deal. Normal is normal.
Tuesday, August 25, 2015
Its been a while...
I can't believe it's been so long since I've posted anything! There just hasn't been much going on medically for me to mention. That's a good thing, right?
I did have my every six months blood work done in July. My results were all good! My pancreastatin went back down. It was at the very top of "normal" at 135 last time and now it's back down to 76. They forgot to do my Chromogranin A so I have to go back in next week for it so that we have the results when I meet with my oncologist mid-Sept (for the last time... sigh--he's leaving for another hospital). I don't know if it's really important to do it since my pancreastatin was normal though but I am curious to see what it is. I'm sure it will still be normal.
I saw a PA last week. It was probably a waste of time/money since I see my oncologist next month but they wanted me to see him since I was originally supposed to see the oncologist but he was out of the office that week. I had planned on cancelling the appointment with the PA depending on my blood test results but I kept forgetting. I did ask the PA who he thought I should see since my onc is leaving. He told me about a new oncologist that he really likes but this Dr. is only there once a week so I'm not sure that will work out with my shot schedule. I'm planning on asking when I see my doc. He's moving up to Huntsman Cancer Institute, which is an excellent cancer hospital that does a lot of research. He wants to focus on that more and spend time with his family (so I was told--I'll get the real story from him)!
I've started a new prescription for my hot flashes and mild depression. Paxil. It's helped decrease the number of hot flashes but not stopped them completely. I haven't decided if the side effects are worth it although they have gotten better. Dry mouth and occasional nausea is all I've been having since the first week. The first week was bad. Lots of nausea and a constant headache.
Am I depressed? I think I was a bit depressed. Not super bad but someday's I just wanted to go back to bed. That's hard to do when you have to work full-time. I do think I'm feeling better--more positive. I'm still super tired most of the time but it seems to come and go. I'll give the Paxil 6 months. I know it is hard to stop taking and you have to wean yourself off so we shall see. I do have a follow-up with my GP who prescribed it in November.
On a funny, not medical note, my dog, Sookie, who is 6 years old and has never destroyed anything decided that my invisalign-type retainer was just too much to resist. I had taken it out in the middle of the night and set it on my nightstand. I guess she just had to have it and chewed it all up into little bitty pieces! I've had it for about as long as I've had her so it was past time for a new one. Still, really? Calling the orthodontist and telling them that your dog ate your retainer? It's actually not that unusual. He said they can't resist them... It's worked out for the best because my front teeth have moved a little bit and with a new retainer, we may be able to get them to move back! I go tomorrow to pick it up. It's not a invisalign retainer but the old hard plastic, metal bar type. It'll have springs on it to move my teeth. I hope I can get used to wearing it. I had one like it when I first got my braces off and it wasn't too bad. Below is Sookie. She's a Havanese. Best.Dog.Ever!
I did have my every six months blood work done in July. My results were all good! My pancreastatin went back down. It was at the very top of "normal" at 135 last time and now it's back down to 76. They forgot to do my Chromogranin A so I have to go back in next week for it so that we have the results when I meet with my oncologist mid-Sept (for the last time... sigh--he's leaving for another hospital). I don't know if it's really important to do it since my pancreastatin was normal though but I am curious to see what it is. I'm sure it will still be normal.
I saw a PA last week. It was probably a waste of time/money since I see my oncologist next month but they wanted me to see him since I was originally supposed to see the oncologist but he was out of the office that week. I had planned on cancelling the appointment with the PA depending on my blood test results but I kept forgetting. I did ask the PA who he thought I should see since my onc is leaving. He told me about a new oncologist that he really likes but this Dr. is only there once a week so I'm not sure that will work out with my shot schedule. I'm planning on asking when I see my doc. He's moving up to Huntsman Cancer Institute, which is an excellent cancer hospital that does a lot of research. He wants to focus on that more and spend time with his family (so I was told--I'll get the real story from him)!
I've started a new prescription for my hot flashes and mild depression. Paxil. It's helped decrease the number of hot flashes but not stopped them completely. I haven't decided if the side effects are worth it although they have gotten better. Dry mouth and occasional nausea is all I've been having since the first week. The first week was bad. Lots of nausea and a constant headache.
Am I depressed? I think I was a bit depressed. Not super bad but someday's I just wanted to go back to bed. That's hard to do when you have to work full-time. I do think I'm feeling better--more positive. I'm still super tired most of the time but it seems to come and go. I'll give the Paxil 6 months. I know it is hard to stop taking and you have to wean yourself off so we shall see. I do have a follow-up with my GP who prescribed it in November.
On a funny, not medical note, my dog, Sookie, who is 6 years old and has never destroyed anything decided that my invisalign-type retainer was just too much to resist. I had taken it out in the middle of the night and set it on my nightstand. I guess she just had to have it and chewed it all up into little bitty pieces! I've had it for about as long as I've had her so it was past time for a new one. Still, really? Calling the orthodontist and telling them that your dog ate your retainer? It's actually not that unusual. He said they can't resist them... It's worked out for the best because my front teeth have moved a little bit and with a new retainer, we may be able to get them to move back! I go tomorrow to pick it up. It's not a invisalign retainer but the old hard plastic, metal bar type. It'll have springs on it to move my teeth. I hope I can get used to wearing it. I had one like it when I first got my braces off and it wasn't too bad. Below is Sookie. She's a Havanese. Best.Dog.Ever!
Wednesday, June 17, 2015
3 years...
I wasn't sure I was going to write anything about my 3 year "Cancerversary." Yes, I'm happy that I am still here. I'm not "celebrating" getting a cancer diagnosis although I doubt anyone does. It is more of a time to pause and reflect on the past 3 years; acknowldge that I am still here and have few issues...
Part of me can't believe it's been 3 years already! Where does the time go? At other times, it seems like I've lived with this ROCK over my head forever.
Why a Rock?
We've lost several fellow ZEBRAS recently. It seems like they are doing well, then have a few issues that quickly accelorate and then they die. It's like a rock slide. Everything is smoothsailing hiking and then BAM! Rock-slide and you are in deep shit doo-doo.
Here's to 3 more!
Part of me can't believe it's been 3 years already! Where does the time go? At other times, it seems like I've lived with this ROCK over my head forever.
Why a Rock?
We've lost several fellow ZEBRAS recently. It seems like they are doing well, then have a few issues that quickly accelorate and then they die. It's like a rock slide. Everything is smooth
Here's to 3 more!
Tuesday, February 17, 2015
A sad day, saying goodbye to a fellow zebra
I wasn't expecting it so soon. The sad news that a fellow zebra has earned her angel wings. I didn't know her personally and was late to her story, through her Caring Bridge website but got caught-up in her strength and drive to CURE her cancer!
Her story brings up many questions regarding how aggressive should one be in their treatment and how do you know if you should do A or B (or C, D, E, F)? I know for Sara, her choice was exactly what she wanted. She fought for it. She moved to another city. She battled her insurance company for approval. It was her only chance for an actual CURE.
Sara was dx'd with mid-gut carcinoid cancer w/mets to her liver. Stage IV. Same as me. She had surgery, sir spheres and PRRT (in Germany). She also had her heart valves replaced due to damage caused from the high levels of serotonin produced by her tumors. She was told if it wasn't for her liver, she wouldn't have cancer! I know that feeling although I'm pretty sure my tumor burden is much less than Sara's was.
Sara decided to seek out a liver transplant. In her quest to find the BEST, she found two top notch transplant surgeons. One told her he won't do liver transplants on Carcinoid patients anymore. Why? Because 40% of the time it recurs in the liver. His option was MVOT or Multi-Visceral Organ Transplant. They take the liver, stomach, pancreas, small intestines and part of the colon from one donor. It's was described as somewhat like changing the engine of a car. There is only one place, I believe, that does them and that is the Miami Transplant Hospital.
I'm not going into too much detail as it's not my story to tell. Sara sailed through the transplant. She was released from the hospital in a few short weeks. She then developed GVHD (graft-vs.-host disease). I have heard of that with blood cancers and having a bone marrow or stem-cell transplant. I didn't know it could happen with organ transplants. It does make sense. I thought of rejection but GVHD is different. It is where the donor organ(s) fight for dominance with the hosts. It looked like Sara was winning her battle but then things turn for the worse. She died this morning.
She leave behind a loving husband and two beautiful daughters. My heart breaks for them.
I'm not sue what I would do if given this option. Take a chance for a cure? Or take the chance that my cancer will remain slow-growing (until it isn't), which could be 5, 10 or 20 years?
I know from reading Sara's blog that she made the right choice for her.
Her story brings up many questions regarding how aggressive should one be in their treatment and how do you know if you should do A or B (or C, D, E, F)? I know for Sara, her choice was exactly what she wanted. She fought for it. She moved to another city. She battled her insurance company for approval. It was her only chance for an actual CURE.
Sara was dx'd with mid-gut carcinoid cancer w/mets to her liver. Stage IV. Same as me. She had surgery, sir spheres and PRRT (in Germany). She also had her heart valves replaced due to damage caused from the high levels of serotonin produced by her tumors. She was told if it wasn't for her liver, she wouldn't have cancer! I know that feeling although I'm pretty sure my tumor burden is much less than Sara's was.
Sara decided to seek out a liver transplant. In her quest to find the BEST, she found two top notch transplant surgeons. One told her he won't do liver transplants on Carcinoid patients anymore. Why? Because 40% of the time it recurs in the liver. His option was MVOT or Multi-Visceral Organ Transplant. They take the liver, stomach, pancreas, small intestines and part of the colon from one donor. It's was described as somewhat like changing the engine of a car. There is only one place, I believe, that does them and that is the Miami Transplant Hospital.
I'm not going into too much detail as it's not my story to tell. Sara sailed through the transplant. She was released from the hospital in a few short weeks. She then developed GVHD (graft-vs.-host disease). I have heard of that with blood cancers and having a bone marrow or stem-cell transplant. I didn't know it could happen with organ transplants. It does make sense. I thought of rejection but GVHD is different. It is where the donor organ(s) fight for dominance with the hosts. It looked like Sara was winning her battle but then things turn for the worse. She died this morning.
She leave behind a loving husband and two beautiful daughters. My heart breaks for them.
I'm not sue what I would do if given this option. Take a chance for a cure? Or take the chance that my cancer will remain slow-growing (until it isn't), which could be 5, 10 or 20 years?
I know from reading Sara's blog that she made the right choice for her.
Friday, February 13, 2015
Scan results--sort of...
I called my cancer clinic Wednesday to see if they had my scan results. I got a call back a couple of hours later. The twat twit that returned my call wasn't even the nurse! I think it was one of the front desk girls. While I appreciated the prompt return call, I was taken aback by her inability to tell me much. I am frustrated because she said they didn't compare this scan to my last scan because it was done at a different hospital (did I change insurance?) duh… OK, why couldn't they get my scan when they had NO problem comparing my past mammograms from said hospital? I had my last diagnostic mammo at this same hospital that I had my recent scan. I had my past mammo’s at the hospital I had my last scan (a year ago). It makes no sense to me. Probably not to you now either!
So, getting to the results. it sounds like I actually had “lesions” in my liver disappear! Great news so why am I not happy? Thistwat twit asked me if a millimeter was bigger than a centimeter! Pre-cancer I wouldn't have known either. I asked her how big are these remaining “lesions?” The only one she commented on was 9 mm, which is pretty small. Last scan they were 1.2 cm or smaller. I had around 10 but even my oncologist said we couldn't be sure what they were. Hmmm, I've had a surgeons hands on/in my liver cutting out what he could, ablating some and leaving the rest so I think we know what they are! Anyhoo, she did say she would put the report on my oncologists desk as he wasn't in the office. OK. I seriously doubt I will hear from him, which is fine. I’m good. I’ll get the report one of these days on MyChart. She did mention that I have a fibroid. Argh. I had one removed a year and a half ago (or so) when I went it for a uterine ablation due to continued/heavy bleeding. It hadn't shown up on my scan nor did it show on ultrasound but my OBGYN said it was about the size of my uterus and most likely causing the bleeding. After removing the fibroid, she tried to do the ablation but couldn't because my uterus was done! It said, “nope, no more hands or machines in there.” It did stop my bleeding so I was ok with that. The twat twit told me I should follow-up with my OBGYN. She said it was near in or on my right ovary. Can a fibroid grow on your ovaries? I thought they were just in your uterus. Guess I’ll Dr Google that one. I’m sad I can’t go back to the OBGYN who did my last procedure (due to job and insurance changing). She was awesome and I really liked her. I felt more compassion and concern from her than I do from any of my other doctors! I haven’t found another one yet. I’ll just wait and see what the report really says.
A long story for what is basically good news! I’m still not happy.
Now it is Friday. I haven't heard from my oncologist and the report it still not in MyChart. I think I will call the hospital today and ask to get a copy of my scan and the report!
A quick update on my scan results. Since I am an impatient patient person, I called the hospital and asked if I could get a copy of my scan and the report. They told me it wouldn't be available until Monday so I canned my cancer clinic and asked them if I could swing by and pick up a copy of the written report. It's closer anyway. I just wasn't feeling very confident after talking to the twat twit from their office regarding said results.
Doesn't sound like any of my "lesions" have disappeared! I still have "multiple, small lesions through all lobes of the liver." They measured 3 of them (she made it sound like I only had 3 and didn't give me the correct measurements either). My last scan said they were all 1.2 centimeters or smaller. The biggest now measure 1.4 x 1.6 centimeters, which is not much growth. The other two mentioned are just shy of a centimeter. Nothing to be worried about with Carcinoid like mine, which is slow growing. I do feel better since reading the results "with my own eyes."
I hope everyone has a lovely 3 day weekend (if you are in the States).
So, getting to the results. it sounds like I actually had “lesions” in my liver disappear! Great news so why am I not happy? This
A long story for what is basically good news! I’m still not happy.
Now it is Friday. I haven't heard from my oncologist and the report it still not in MyChart. I think I will call the hospital today and ask to get a copy of my scan and the report!
An update:
Doesn't sound like any of my "lesions" have disappeared! I still have "multiple, small lesions through all lobes of the liver." They measured 3 of them (she made it sound like I only had 3 and didn't give me the correct measurements either). My last scan said they were all 1.2 centimeters or smaller. The biggest now measure 1.4 x 1.6 centimeters, which is not much growth. The other two mentioned are just shy of a centimeter. Nothing to be worried about with Carcinoid like mine, which is slow growing. I do feel better since reading the results "with my own eyes."
I hope everyone has a lovely 3 day weekend (if you are in the States).
Wednesday, February 4, 2015
Scanxiety...
Google Scanxiety and you will actually get a definition: Anxiety suffered while waiting for the results of an important medical scan.
My definition: Anxiety suffered while waiting to get the scan!
I met with my oncologist yesterday and while everything seems fine, he did say that I should have a scan now rather than wait. I was a little surprised because at our last visit he said I could wait as long as my tumor markers remained "normal." This time he said he wouldn't want me to go longer than a year, which it has been as of Monday.
I am actually relieved to be getting a scan. Even though my markers and other blood work are good, I still want to "see" what is going on, if anything. Better to know that I am still stable than to wonder if I am. I don't trust tumor markers to show everything. However, even with the relief, there is anxiety. You just never know. He also told me I could get it within the next couple of weeks, like no hurry. Then he told the nurse to schedule it "now." NOW? Did he feel something when he palpated my abdomen and just didn't want to say anything? Then I remembered that we discussed getting the scan before he examined me. I'm sure he just told her to go ahead and schedule it now, not meaning urgent but to get it done since I may have had to wait a couple of weeks to get in. Well... that ain't the case. I go in Monday morning at, gulp, 7am! I'm not too thrilled about that but at least I'll be done early and can get to work. This is at a different hospital than I've had my other scans. This is at the hospital where I had my mammogram. Its a nice place and I'm sure it will be fine.
Keep your fingers crossed for good results!
Also, today is World Cancer Day.
Monday, February 2, 2015
Proposed FDA Regulations of 'Lab Developed Tests': Could Cause Harm to Patients
I received this information in another post from a fellow blogger: Cancer....an unexpected journey
Please, click on the link and sign the petition. Change.org
I don't want to plagiarize Luna's post but I want to say that most NET Cancer patients receive very specialized blood tests that are not "standardized" tests and could potentially not be covered by insurance if this proposed regulation goes into effect. I receive one that it not considered a "standard" blood test that gets sent to a specialized lab in California (ISI) and there are several more that I could get as well (a few I have had once but have not repeated them yet)...
If you are so inclined, please contact your Congressional Representative and your Senators to let them know that these proposed regulatory measures should not be passed. You can even email them!
To find your Senators:
http://www.senate.gov/general/contact_information/senators_cfm.cfm
Find your Representative:
http://www.house.gov/representatives/find/
Email President Obama/the White House:
http://www.whitehouse.gov/contact/submit-questions-and-comments
This can affect those with all types of cancer and rare diseases for which standardized testing may not be available.
Speaking of blood tests...
I had my 6 month tests. Everything is normal. My CgA is the same but my pancreastatin has gone up. It's now at the very top of normal. (0-135 is the range and mine is 135). That's a small increase but I'm sure nothing to worry about.
I meet with my oncologist tomorrow. I have to find out if they really are on my employee's health plan now. If so, I will switch. It'll save me some money-I think. Not much but a little.
Please, click on the link and sign the petition. Change.org
I don't want to plagiarize Luna's post but I want to say that most NET Cancer patients receive very specialized blood tests that are not "standardized" tests and could potentially not be covered by insurance if this proposed regulation goes into effect. I receive one that it not considered a "standard" blood test that gets sent to a specialized lab in California (ISI) and there are several more that I could get as well (a few I have had once but have not repeated them yet)...
If you are so inclined, please contact your Congressional Representative and your Senators to let them know that these proposed regulatory measures should not be passed. You can even email them!
To find your Senators:
http://www.senate.gov/general/contact_information/senators_cfm.cfm
Find your Representative:
http://www.house.gov/representatives/find/
Email President Obama/the White House:
http://www.whitehouse.gov/contact/submit-questions-and-comments
This can affect those with all types of cancer and rare diseases for which standardized testing may not be available.
Speaking of blood tests...
I had my 6 month tests. Everything is normal. My CgA is the same but my pancreastatin has gone up. It's now at the very top of normal. (0-135 is the range and mine is 135). That's a small increase but I'm sure nothing to worry about.
I meet with my oncologist tomorrow. I have to find out if they really are on my employee's health plan now. If so, I will switch. It'll save me some money-I think. Not much but a little.
Wednesday, January 21, 2015
Patient Advocates
I received a "tweet" that said I was listed on Listly's list of 300+ patient advocates.
http://list.ly/list/4V0-300-plus-patient-advocates-on-twitter#item_970146?
I'm not really familiar with this list but I'm going to check it out. I'm #316! You can follow me on Twitter through the link on that site. I'll try and add a "twitter" button on my blog too. I don't tweet much--I'm hardly online anymore after working hours. I spend most of my day on a computer and the last thing I really want to do at night it spend more time on it! Of course with smart phones and iPads it not easy to get away from our online "life".
So what is a patient advocate?
Patient advocacy is an area of lay specialization in health care concerned with advocacy for patients, survivors and carers. Typical advocacy activities are: patient rights, matters of privacy, confidentiality or informed consent, patient representation, awareness building, and support and education of patients, survivors and their carers. Patient advocates give a voice to patients, survivors and their carers on health-care related (public) fora, informing the public, the political and regulatory world, health-care providers (hospitals, insurers, pharmaceutical companies etc.), organisations of health-care professionals, the educational world and last but not least the medical and pharmaceutical research communities.
Patient advocacy in its current form finds its origins in the early days of cancer research and treatment, in the 1950s. It's part of the notion of Total Care, a term coined by Sidney Farber, a Harvard physician and cancer researcher, referring to the treatment of children suffering from leukemia where "the cancer clinician treated the family as a whole".[1] The concept of Total Care subordinated clinical investigation to patient welfare ... "clinical investigation in the field of cancer may be carried out only as part of the total care of the patient" (Farber et al.,1956).[2] Cancer patients are usually not in a position to take an assertive stance, and even less so in the 50s; clinicians recruited patients for tests and suspicion reigned at the NIH as researchers had to convince doctors and patients they weren't experimenting on people. In order to properly represent the patients in this medico-legal and ethical discussion patient advocacy came into being as a way to make the voice of the patient heard.[3] http://en.wikipedia.org/wiki/Patient_advocacy
I'm not sure I consider myself a "patient advocate". I started my blog to keep my friends and family informed on my medical issues and treatment. Of course, I think most personal cancer blogs start out that way. I do want to share what I learn along the way and help others. I'd like to do more but with working full-time, I just don't have the "time" or energy to keep up with everything.
To me, a Patient Advocate is someone who "stands for the patient". Helps them navigate this world we call "cancer". Lends moral support, medical information and shares treatment experiences.
What is a Patient Advocate to you?
http://list.ly/list/4V0-300-plus-patient-advocates-on-twitter#item_970146?
I'm not really familiar with this list but I'm going to check it out. I'm #316! You can follow me on Twitter through the link on that site. I'll try and add a "twitter" button on my blog too. I don't tweet much--I'm hardly online anymore after working hours. I spend most of my day on a computer and the last thing I really want to do at night it spend more time on it! Of course with smart phones and iPads it not easy to get away from our online "life".
So what is a patient advocate?
Patient advocacy is an area of lay specialization in health care concerned with advocacy for patients, survivors and carers. Typical advocacy activities are: patient rights, matters of privacy, confidentiality or informed consent, patient representation, awareness building, and support and education of patients, survivors and their carers. Patient advocates give a voice to patients, survivors and their carers on health-care related (public) fora, informing the public, the political and regulatory world, health-care providers (hospitals, insurers, pharmaceutical companies etc.), organisations of health-care professionals, the educational world and last but not least the medical and pharmaceutical research communities.
Patient advocacy in its current form finds its origins in the early days of cancer research and treatment, in the 1950s. It's part of the notion of Total Care, a term coined by Sidney Farber, a Harvard physician and cancer researcher, referring to the treatment of children suffering from leukemia where "the cancer clinician treated the family as a whole".[1] The concept of Total Care subordinated clinical investigation to patient welfare ... "clinical investigation in the field of cancer may be carried out only as part of the total care of the patient" (Farber et al.,1956).[2] Cancer patients are usually not in a position to take an assertive stance, and even less so in the 50s; clinicians recruited patients for tests and suspicion reigned at the NIH as researchers had to convince doctors and patients they weren't experimenting on people. In order to properly represent the patients in this medico-legal and ethical discussion patient advocacy came into being as a way to make the voice of the patient heard.[3] http://en.wikipedia.org/wiki/Patient_advocacy
I'm not sure I consider myself a "patient advocate". I started my blog to keep my friends and family informed on my medical issues and treatment. Of course, I think most personal cancer blogs start out that way. I do want to share what I learn along the way and help others. I'd like to do more but with working full-time, I just don't have the "time" or energy to keep up with everything.
To me, a Patient Advocate is someone who "stands for the patient". Helps them navigate this world we call "cancer". Lends moral support, medical information and shares treatment experiences.
What is a Patient Advocate to you?
Tuesday, January 6, 2015
Fake Cancer Claims
Lately there have been 3 instances of people faking a cancer diagnosis (online support groups) either to get money or attention or both. One was a local girl who bilked people out of thousands of dollars. She even had her place of employment fooled. They held a fund raiser for her and raised $16,000! She also received money from non-profits but they won't say which. You can read the story here: Charges-filed-against-utah-woman-accused
Two other instances were on a "community" website. I won't say which but it is one I go to occasionally and read up on how people are doing. Two young women. Diagnosed with two serious cancers. One was kidney and the other was endometrial and colon cancer. One girl died. There were over 100 posts on her blog. IT WAS ALL FAKE! The other blog just disappeared, however, I also followed her on Instagram. Then that one disappeared and I received a "follow" request from her again and when I clicked on the link, it was from another person who said this girl was a total fake! I found out that it was true. I don't understand people mental frame of mind that can do this. Don't they realize it hurts all of us who are REAL? I know some are just plain criminals and want to milk money out of people however they can. Sociopaths. Others may be mentally ill and craving attention.
When I googled "fake cancer blogs" to find the article about the girl here in Utah, I was shocked to see how many reports came up of people faking their cancer diagnosis (or their child's) for financial gain (or in one case, breast implants). Really?
I don't know how you can tell who is real and who is not. I guess you just take your chances in the online media and communities. Be careful who you donate too! Donate to a charitable organization if you can.
Please know this. I am real. Yes, I have hair. No, I have never had chemo but even if I had, not all chemo causes hair loss. I have scars. I have pathology reports. Even though those can probably be fakes pretty easily. My scars can't. Just sayin....
Two other instances were on a "community" website. I won't say which but it is one I go to occasionally and read up on how people are doing. Two young women. Diagnosed with two serious cancers. One was kidney and the other was endometrial and colon cancer. One girl died. There were over 100 posts on her blog. IT WAS ALL FAKE! The other blog just disappeared, however, I also followed her on Instagram. Then that one disappeared and I received a "follow" request from her again and when I clicked on the link, it was from another person who said this girl was a total fake! I found out that it was true. I don't understand people mental frame of mind that can do this. Don't they realize it hurts all of us who are REAL? I know some are just plain criminals and want to milk money out of people however they can. Sociopaths. Others may be mentally ill and craving attention.
When I googled "fake cancer blogs" to find the article about the girl here in Utah, I was shocked to see how many reports came up of people faking their cancer diagnosis (or their child's) for financial gain (or in one case, breast implants). Really?
I don't know how you can tell who is real and who is not. I guess you just take your chances in the online media and communities. Be careful who you donate too! Donate to a charitable organization if you can.
Please know this. I am real. Yes, I have hair. No, I have never had chemo but even if I had, not all chemo causes hair loss. I have scars. I have pathology reports. Even though those can probably be fakes pretty easily. My scars can't. Just sayin....
Thursday, January 1, 2015
Happy New Year!
Happy 2015!
I had one goal for 2014. I'm not calling it a "resolution" because I had little control over it. My goal? No major surgery! Yup. I made it. Nothing major in 2014. Only one minor procedure completely unrelated to cancer. I'm not sure if I should set any goals for 2015. I could keep with the same theme and probably be safe.
A few personal milestones in 2014.
Check out the TOP TEN Highlights of the Year for Carcinoid-Neuroendocrine Cancer
from The Carcinoid Foundation website: https://carcinoid.wordpress.com/2014/12/18/10-highlights-of-the-year-2014-for-the-carcinoid-and-neuroendocrine-tumor-community/
1) Gallium 68 Clinical Studies
2) PRRT Clinical Trials
3) FDA Approves Lanreotide for Gastroenteropancreatic Neuroendocrine Tumors
4) Immunotherapy for NETs
5) Global NET Patient Survey (yes, I took part in this)
6) NET Conferences
7) NET Cancer Day
8) ONCLive Features Series on pancreatic Neuroendocrine Tumors
9) Warner Advocacy Award
10) NETs in the News and on Television (link to the BYU men's basketball coach here in Utah w/PNET.
Here's to a safe and healthy 2015!
I had one goal for 2014. I'm not calling it a "resolution" because I had little control over it. My goal? No major surgery! Yup. I made it. Nothing major in 2014. Only one minor procedure completely unrelated to cancer. I'm not sure if I should set any goals for 2015. I could keep with the same theme and probably be safe.
A few personal milestones in 2014.
- I was laid-off from my job of 3 years after a cancer diagnosis and two surgeries. This was after my boss told me they would do whatever necessary to support me. Right. Lay me off me and take my insurance away unless you sign this "release" that states you won't sue us! Blackmail? You bet! Stress? Nah. No stress there.
- I got a job after 2 months. It's a great job. I like it a lot. I actually work for an insurance company now. Ironic? I think so. Oh, I also make more money than I did before (but my insurance costs me more and I had to switch around some doctors but not my oncologist).
- Remained stable according to my blood work (last scan was in February, 2014 a few days after I was laid-off my job). I have not had a scan since.
- Attended my first Dressage show with my horse Abbie. We got a second place. It was a really small show but I was proud of how well she handle the "show" atmosphere. It was her second show ever.
Up in 2015: What's next?
- Bloodwork scheduled for next week. I'm not expecting any changes. I still feel good with no carcinoid syndrome symptoms. I do have a lot of headaches but this could be from the Sandostatin or it may be my sinus's. I'm calling a doctor tomorrow.
- Schedule a scan before July 1st since that's when my insurance deductible kicks in again. since I've met my deductible, I'd like to get it before I have to reach it again. I have not (for the first time since diagnosis) met my maximum out-of-pocket.
- Switch insurance to my employee health plan. My oncologists clinic is now part of our network. I have no reason not to switch. I'm very, very excited as this will save me some $$$.
- I'd really like to go to another couple of Dressage shows. I'm not sure if I can afford it but I'm going to try.
- Go on a sister's trip. Its been too long! Even if we keep it domestic.
Check out the TOP TEN Highlights of the Year for Carcinoid-Neuroendocrine Cancer
from The Carcinoid Foundation website: https://carcinoid.wordpress.com/2014/12/18/10-highlights-of-the-year-2014-for-the-carcinoid-and-neuroendocrine-tumor-community/
1) Gallium 68 Clinical Studies
2) PRRT Clinical Trials
3) FDA Approves Lanreotide for Gastroenteropancreatic Neuroendocrine Tumors
4) Immunotherapy for NETs
5) Global NET Patient Survey (yes, I took part in this)
6) NET Conferences
7) NET Cancer Day
8) ONCLive Features Series on pancreatic Neuroendocrine Tumors
9) Warner Advocacy Award
10) NETs in the News and on Television (link to the BYU men's basketball coach here in Utah w/PNET.
Here's to a safe and healthy 2015!
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