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.
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