Friday, July 1, 2011
1rst Year Follow-up Results
The most important news: NO CANCER! But, as a result of my new immune system not completely accepting its new host, I have Graft Vs. Host Disease. This is fairly common with everyone that has a donor-even perfectly matched donors like mine. This is treated with immunosuppressing drugs. And since the perfect combo of drugs to combat GVHD has not been found...I signed up to be part of a study. I was randomly assigned a 2 drug combination: Prednisone and Sirolimus. Unfortunately, both these drugs have lots of side effects. So, while taking these medications, I also have to take a cholesterol lowering, lipid lowering drug, pneumonia preventing drug, and a virus preventing drug. My pharmacy is loving me again!
Friday, June 24, 2011
June Update
As I had mentioned last update, I do not have any diagnosed GVHD. But, I do have suspected GVHD. Because of this suspicion I am headed up to the SCCA next week to do my 1 year post-transplant round of appointments. My main symptom of GVHD is tightness in my muscles. For example, it is sore and uncomfortable to sit cross-legged right now. I've been noticing it for awhile and feel like it is getting worse. I talked with the nurse at the SCCA and they felt it is time to come into the SCCA for an evaluation. Muscle fascitis is most often irreversible. Since my 1 year appointments were only a couple weeks away anyways, they moved up the appointments. This is my schedule for next week.....
Monday: fasting blood draw, consult with MD, sedation, and bone marrow biopsy
Tuesday: eye doctor, dentist, pulmonary function test, nutritional consult
Wednesday: DEXA scan, PET scan, gyno exam, physical therapy evaluation
Thursday: conclusion conference
Here's to continued remission and no hiding cancer.
Hope all goes well.
Oh, and the odds are on my side after 1 year. The mortality rates go way down after the 1 year mark.
The next thing on my agenda is writing a letter to my donor. It has to be anonymous, because she is from Europe and over there the rules are that you can only reveal personal information after 2 years. I cannot say anything that would reveal where I am from or anything that could identify myself. I really don't know what to say. What do you say to someone that donated something so personal? My blood type has now changed to her blood type. I now have her blood DNA. Weird....I know.
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Monday: fasting blood draw, consult with MD, sedation, and bone marrow biopsy
Tuesday: eye doctor, dentist, pulmonary function test, nutritional consult
Wednesday: DEXA scan, PET scan, gyno exam, physical therapy evaluation
Thursday: conclusion conference
Here's to continued remission and no hiding cancer.
Hope all goes well.
Oh, and the odds are on my side after 1 year. The mortality rates go way down after the 1 year mark.
The next thing on my agenda is writing a letter to my donor. It has to be anonymous, because she is from Europe and over there the rules are that you can only reveal personal information after 2 years. I cannot say anything that would reveal where I am from or anything that could identify myself. I really don't know what to say. What do you say to someone that donated something so personal? My blood type has now changed to her blood type. I now have her blood DNA. Weird....I know.
Saturday, May 21, 2011
May Update
So, it has been a long time since the last update. It is time for some new information. I hate it when I find cancer blogs on the web with no updates because I always wonder what has happened to them.
In general, I am doing pretty well. I am currently seeing the oncologist once a week. For awhile, I was going every 2-3 weeks. That ended when I got pneumonia and wasn't getting better. Now I am back to weekly. Usually these visits consist of a blood draw, wait for results, and go over blood counts. I still do a Neupogen (G-shot) once a week to keep my white blood cell counts above 4. This is so I can fight off infections. My hematocrit is back to normal. My platelets still are hovering around 60-70. (Normal is 150-400) I am under testing to see if I am making an antibody that attacks platelets. If that is not the reason they are still low, I will probably need a bone marrow biopsy to see what is going on in the marrow.
I am down to two prescribed medications and a complete drawer full of medications that I need to take in to one of those medication recycling programs. One is acyclovir. This is to prevent getting the chicken pox virus. I am not longer immune to any of the childhood immunized illnesses. I get to start over again on immunizations in July. The other medication is hormone replacements due to chemo and radiation. I also take a handful of vitamins and other over the counter supplements.
I have no diagnosed GVHD (graft vs.host disease). This is a major complication from a stem cell transplant. It is where your new donated stem cells attack your body because it does not recognize it as its own. Complications can range from minor (like red skin) to major (like organs shutting down resulting in death). Since a majority of stem cell recipients from donors get GVHD, I am always thinking I have it. Every little bump, weird feeling, and sore muscle starts me thinking....what if it's GVHD? I am sure the longer I am cancer free, the better it will get.
In July it will be my 1rst birthday! I will be back up in Seattle at the SCCA for 1 week to do all my 1 year check-up appointments. I get to see how well my body has recovered from all the toxic battering it has endured. They check everything including your mouth, lungs, heart, bone marrow, ect. And I will start my immunizations.
Some may be wondering what the long term affects of all the chemo and radiation are. The thing that I notice the most is the numbness in my feet. I have seen a podiatrist and there is really nothing to treat it. I will likely always have numbness in my feet. Also, I don't grow armpit hair. (I know, bummer, huh?) I don't know if this will last forever or not. I have a new allergy to egg. I am gradually getting my energy back. I've read that the #1 complaint from transplant patients at 1 year is fatigue, so I guess I am right on track.
Meanwhile, life has gone on at the Forslund household. My hair is growing out into a nice pixie cut for summer. We have a new puppy named Eldy. (LD for loghans dog) For those that know the transplant rules, I know I am not supposed to have a puppy until 1 year post transplant. But, some rules are meant to be broken, right? Plus, I am almost there! We are planning lots of camping trips for the summer to make up for last year. Loghan is in soccer and loves superheroes. Life is good.
In general, I am doing pretty well. I am currently seeing the oncologist once a week. For awhile, I was going every 2-3 weeks. That ended when I got pneumonia and wasn't getting better. Now I am back to weekly. Usually these visits consist of a blood draw, wait for results, and go over blood counts. I still do a Neupogen (G-shot) once a week to keep my white blood cell counts above 4. This is so I can fight off infections. My hematocrit is back to normal. My platelets still are hovering around 60-70. (Normal is 150-400) I am under testing to see if I am making an antibody that attacks platelets. If that is not the reason they are still low, I will probably need a bone marrow biopsy to see what is going on in the marrow.
I am down to two prescribed medications and a complete drawer full of medications that I need to take in to one of those medication recycling programs. One is acyclovir. This is to prevent getting the chicken pox virus. I am not longer immune to any of the childhood immunized illnesses. I get to start over again on immunizations in July. The other medication is hormone replacements due to chemo and radiation. I also take a handful of vitamins and other over the counter supplements.
I have no diagnosed GVHD (graft vs.host disease). This is a major complication from a stem cell transplant. It is where your new donated stem cells attack your body because it does not recognize it as its own. Complications can range from minor (like red skin) to major (like organs shutting down resulting in death). Since a majority of stem cell recipients from donors get GVHD, I am always thinking I have it. Every little bump, weird feeling, and sore muscle starts me thinking....what if it's GVHD? I am sure the longer I am cancer free, the better it will get.
In July it will be my 1rst birthday! I will be back up in Seattle at the SCCA for 1 week to do all my 1 year check-up appointments. I get to see how well my body has recovered from all the toxic battering it has endured. They check everything including your mouth, lungs, heart, bone marrow, ect. And I will start my immunizations.
Some may be wondering what the long term affects of all the chemo and radiation are. The thing that I notice the most is the numbness in my feet. I have seen a podiatrist and there is really nothing to treat it. I will likely always have numbness in my feet. Also, I don't grow armpit hair. (I know, bummer, huh?) I don't know if this will last forever or not. I have a new allergy to egg. I am gradually getting my energy back. I've read that the #1 complaint from transplant patients at 1 year is fatigue, so I guess I am right on track.
Meanwhile, life has gone on at the Forslund household. My hair is growing out into a nice pixie cut for summer. We have a new puppy named Eldy. (LD for loghans dog) For those that know the transplant rules, I know I am not supposed to have a puppy until 1 year post transplant. But, some rules are meant to be broken, right? Plus, I am almost there! We are planning lots of camping trips for the summer to make up for last year. Loghan is in soccer and loves superheroes. Life is good.
The family at Relay for Life in Auburn.
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