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Re: stem cell transplant
PN54 - we also had the same questions prior to transplant in October. Rex made the decision based on recommendation from treating oncologist (Topeka, Kansas) and transplant facility (Univeristy of Kansas Medical Center - Kansas City) - transplant when remission reached. We struggled with this decision 4-6 weeks based on some findings that remission on novel therapies is just as good as with transplant. As Nancy and Lori pointed out - once the decision for treatment is made - concentrate on that and nothing else. Our best to you as you move forward. Rex and Kay (Kansas)
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Kansas - Name: Rex
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2010
- Age at diagnosis: 61
Re: stem cell transplant
I was recently diagnosed with multiple myeloma in May 2010. According to the Docs, I was stage 1- 2. They started me on induction therapy with Revlimid and Dexmathasone. Have gained 20 lbs from the meds. Met with the Moffitt Cancer Center Bone Marrow Transplant Team in November. I too am very interested in the information asked regarding the questions for Auto Stem Cell Harvesting/Transplant. My transplant Dr. told me this would only add 1 year on to whatever I had. Have been able to continue working full time 40 hours a week, developed a blood clot, taking blood thinner injections daily for the next year. Also on seizure med, Dilantin and have been told I will have to change to Keppra due to not playing nice maphalan. I am 50% to remission.
Spoke to my local dr, she insisted I do the harvesting asap, and put the transplant on the back burner for awhile. Was told I would need a tandem, and then told need someone with me 24/7 after the transplant, and after discharge from the unit, need to stay in Tampa, FL since I live not close to the cancer center. How did you make this decision, I am praying everyday for guidance and direction. Good news the insurance company called last week, they approved the eval for the testing for stem cell harvesting. And also assigned another case manager, this time for transplant. I too am very confused. My son is 13 years old, and he asked me this question, Mom, don't you want that extra year to spend with me? Sorry for the long post. but need to hear from others regarding your experiences and outcomes.
Thanks
Tracy 6613
Spoke to my local dr, she insisted I do the harvesting asap, and put the transplant on the back burner for awhile. Was told I would need a tandem, and then told need someone with me 24/7 after the transplant, and after discharge from the unit, need to stay in Tampa, FL since I live not close to the cancer center. How did you make this decision, I am praying everyday for guidance and direction. Good news the insurance company called last week, they approved the eval for the testing for stem cell harvesting. And also assigned another case manager, this time for transplant. I too am very confused. My son is 13 years old, and he asked me this question, Mom, don't you want that extra year to spend with me? Sorry for the long post. but need to hear from others regarding your experiences and outcomes.
Thanks
Tracy 6613
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Tracy 6613
Re: stem cell transplant
I was diagnosed with Multiple Myeloma in July 2008, my hemotoligist/oncologist started me on Revlimid and Dexametasone with good results. The treatment slowed down and stopped new growth. In December 2008 she referred me to James T. Wilmot Cancer Center in Rochester, NY where I met with Dr. Gordon Phillips, who is the Transplant Doctor there. It was decided that I was a good candidate for a Stem Cell Transplant, so they stopped the Revlimid/Dexamethasone treatments and in February we began harvesting my stem cells for transplant. On March 16, 2009, I received my Stem Cell Transplant, after 3 months they did a Bone Marrow Biopsy and it showed that I was in remission. In November of this year, 2010, I had another Bone Marrow Biopsy and it shows that I am still in remission, on March 16, 2011 it will be two years in remission. They say that it takes 6 months to start feeling yourself again, it took me a year, as I had underlying problems with Crohns Desease prior to being diagnosed with multiple myeloma. I was in the hospital for 3 weeks then sent home. My husband was my caregiver and I had a visiting nurse visit me every day for approximately 1 month, that was reduced to once a week until my Hickman (the ports in my chest that they took my stem cells from) was removed. To say it was a easy journey would be exagerating, as I was ill at times and it took me a while to regain my appetite. But now my weight is good and I function normally. There are days that I am tired, on those days I just chill with a good book, but for the most part I am very active. I am very surprised that the doctor told you that it will give you 1 more year, because no one knows... it has been documented that some people have been in remission for 10 to 15 years. In most cases pneumonia is what cases most problems with people with Myeloma... My suggestion is to have the Stem Cell Transplant , because everyday there are new trials and new advancements of treatments, and most of all keep a positive attitude, don't dwell on the what if's... I enjoy my life and don't think of the what if's, I keep a positive attitude and do things that I want to do.
Good Luck to you!
Good Luck to you!
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Nickie - Name: Nickie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 2008
- Age at diagnosis: 62
Re: stem cell transplant
Tracy, treatment options such as transplant are not easy decisions. Not only do you have the physicial side effects but the emotional ones as well. We were only going to do the harvest and wait on the transplant - but then Rex decided he had gone that far why not just go ahead and get it done while he was feeling stronger. His treatment was Velcade/Dex (I believe 8 cycles) and was fortunate enough to reach remission - we just didn't know how long that remission would last. Due to kidney issues he was inpatient for about 10 days (many do the process on an outpatient basis). At no time did his medical team indicate a timeframe as a result of the transplant - only God knows what that timeframe will be. As we were struggling with the transplant decision I asked Rex what he would tell me if it were me -- he said it would be my decision and he would support it. So that's what we did. My focus of research changed from continued treatment with novel therapies to stem cell transplant and its side effects. I pretty much knew what he would go through including how much of the Melphalan he should have based on his kidney issues. My thoughts and prayers to you and to all who visit this site for not only answers but continued support. Rex and Kay (Kansas)
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Kansas - Name: Rex
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2010
- Age at diagnosis: 61
Re: stem cell transplant
Tracy and Rex, I keep reading your posts and ask myself if your doctors have given you any pamphlets to read on this subject! Yes it is a scary procedure but, the way it was explained to me is, if you are considered a candidate to receive a SCT then do it! Eventually you can develop a resistance to drug therapy.
Today, statistics show that the transplants of today have lasted 5 years without further symptoms, no one knows... I am going on 2 years, if I relaps I can be put back on the drug treatment or have another transplant. When they harvested my cells they took enough for 2 transplants, if needed I can have another one, would I do it again, definitely!
I agree that options such as transplant isn't a easy decision, but there is help for all that you mention, physical side effects, emotional ones and financial... I know, I have been there.
Good luck to the both of you!
Today, statistics show that the transplants of today have lasted 5 years without further symptoms, no one knows... I am going on 2 years, if I relaps I can be put back on the drug treatment or have another transplant. When they harvested my cells they took enough for 2 transplants, if needed I can have another one, would I do it again, definitely!
I agree that options such as transplant isn't a easy decision, but there is help for all that you mention, physical side effects, emotional ones and financial... I know, I have been there.
Good luck to the both of you!
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Nickie - Name: Nickie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 2008
- Age at diagnosis: 62
Re: stem cell transplant
Kay... I just further read your posts and realize now that Rex has already gone through SCT... can you tell me how long ago this was?
I am still a firm believer that SCT is the way if they say that you are a candidate, that you should take the treatment... nothing is simple. The bad kidney's comes as a result of the Myeloma, I'm sorry that he had to go through that, I was fortunate that once treatment for the multiple myeloma my creatinine levels dropped to a 1.2 from a 6 and now I have to make sure that I keep fully hydrated.
Tracy, hopefully you will make the right decision for you, but don't be scared. If your doctor is not supportive then you need to find another one.
I hope that I am not coming across as being evasive because I do want to help all that I can, I just feel that you need to know everything that is out there and be open minded to everything. When I was first diagnosed with multiple myeloma I was shocked, depressed, then MADDDDD... once I got over this, which wasn't long, that is when I decided that I would keep a positive attitude and held my head high when I talked about it, so far this has helped in my recovery. Yes, during recovery from the SCT I too went through the emotions... it is to be expected, but even during my worse time I kept positive. I have the greatest SCT doctor around. He smiles, he is very informative, he calls the house if he needs to speak to me, and he has just a very powerful attitude that I draw from.
Good luck to the both of you and God Bless, will keep you both in my prayers!
I am still a firm believer that SCT is the way if they say that you are a candidate, that you should take the treatment... nothing is simple. The bad kidney's comes as a result of the Myeloma, I'm sorry that he had to go through that, I was fortunate that once treatment for the multiple myeloma my creatinine levels dropped to a 1.2 from a 6 and now I have to make sure that I keep fully hydrated.
Tracy, hopefully you will make the right decision for you, but don't be scared. If your doctor is not supportive then you need to find another one.
I hope that I am not coming across as being evasive because I do want to help all that I can, I just feel that you need to know everything that is out there and be open minded to everything. When I was first diagnosed with multiple myeloma I was shocked, depressed, then MADDDDD... once I got over this, which wasn't long, that is when I decided that I would keep a positive attitude and held my head high when I talked about it, so far this has helped in my recovery. Yes, during recovery from the SCT I too went through the emotions... it is to be expected, but even during my worse time I kept positive. I have the greatest SCT doctor around. He smiles, he is very informative, he calls the house if he needs to speak to me, and he has just a very powerful attitude that I draw from.
Good luck to the both of you and God Bless, will keep you both in my prayers!
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Nickie - Name: Nickie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 2008
- Age at diagnosis: 62
Re: stem cell transplant
Nickie, yes Rex had the transplant the end of October - tomorrow will be +60 days. "Ants came to the picnic" (I love that quote from another post) in the form of another hospital stay due to extremely low blood pressure and dehydration-- he is still recovering but better every day. Each and every person's experience will be different - whether physically or mentally. Experiences can be shared - but when it comes time for a decision, the only one that should make that decision is the one with myeloma.
Newly diagnosed or those contemplating decisions need to know (and this is from Rex) "that first you have shock, sadness, followed by fear, what's happened to your world which is falling apart - but then plans begin to fight this. The next step is to find a doctor you like and trust with your life - because he/she will be a part of your decision making process for treatment. Fear will subside, the sadness will go away, and then your focus will be on how do I get better." Rex and Kay (Kansas)
Newly diagnosed or those contemplating decisions need to know (and this is from Rex) "that first you have shock, sadness, followed by fear, what's happened to your world which is falling apart - but then plans begin to fight this. The next step is to find a doctor you like and trust with your life - because he/she will be a part of your decision making process for treatment. Fear will subside, the sadness will go away, and then your focus will be on how do I get better." Rex and Kay (Kansas)
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Kansas - Name: Rex
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2010
- Age at diagnosis: 61
Re: stem cell transplant
Kansas wrote:If complete remission is reached with novel therapy (Vel/Dex) should stem cell transplant still be done?
I waited. That was three years ago. As my myeloma begins to "creep back," I am considering stem cell transplant sometime next year after first relapse. Waiting was the right decision for me and I would recommend ti for anyone who achieves a very good partial response or complete response during induction therapy phase. Don't forget to get your stem cells harvested if you decide to wait! Good luck- Pat
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Pat Killingsworth - Name: Pat Killingsworth
- Who do you know with myeloma?: I am a multiple myeloma patient
- When were you/they diagnosed?: April, 2007
- Age at diagnosis: 51
Re: stem cell transplant
Hi Pat...I just was diagosed Dec 23...I really appreciate the candor and info on this board. I am going to Mayo Clinic in Scottsdale in Jan. It is interesting to see the 2 different camps regarding SCT. I have no idea what camp I am in. By the way I saw a video you did (I forget the site). I was very inspired..
regards,
scott
regards,
scott
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AZScott - Name: AZ Scott
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Dec 2010
- Age at diagnosis: 52
Re: stem cell transplant
Options, options, options and decisions, decisions, decisions. I think those are the catch words of a diagnosis of multiple myeloma. It is important to learn what all of the options are for treatment and the ones that are recommended for your particular expression of this cancer and your life. Then you need to decide which path you want to follow and what doctor is going to be the one to go along this journey with you.
I developed a pathologic fracture of my arm about a year after I was diagnosed. I started Revlimid, Dex and Zometa infusions right away. At the time my doctor recommended an autologous stem cell transplant because he felt it would be the best way to treat my cancer and preserve my bones. I looked at all of the options and finally decided to follow the path that my oncologist recommended. I had the transplant last January and am doing really well. I have my energy back and I feel better than I did for several years prior to the transplant.
I am not on maintenance drugs because I had a bad reaction to them within a few days of starting them. This may mean that the time to progression is reduced and it may not. It's a crap shoot. But, my oncologist says that when I need more treatment there are lots of options that are available and new ones that will be available.
So, again in the future there will be those words again, options, options, options, decisions, decisions, decisions.
Good luck with your journey with this disease and know that we are all here pulling for one another.
Happy New Year to everyone on this forum. May each of us have a healthy 2011.
Nancy
I developed a pathologic fracture of my arm about a year after I was diagnosed. I started Revlimid, Dex and Zometa infusions right away. At the time my doctor recommended an autologous stem cell transplant because he felt it would be the best way to treat my cancer and preserve my bones. I looked at all of the options and finally decided to follow the path that my oncologist recommended. I had the transplant last January and am doing really well. I have my energy back and I feel better than I did for several years prior to the transplant.
I am not on maintenance drugs because I had a bad reaction to them within a few days of starting them. This may mean that the time to progression is reduced and it may not. It's a crap shoot. But, my oncologist says that when I need more treatment there are lots of options that are available and new ones that will be available.
So, again in the future there will be those words again, options, options, options, decisions, decisions, decisions.
Good luck with your journey with this disease and know that we are all here pulling for one another.
Happy New Year to everyone on this forum. May each of us have a healthy 2011.
Nancy
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
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