Hello Kay, Nancy is quite right, that it is a hard decision. My husband went into CR with simple oral chemotherapy, but we were never offered any other option but SCT. So I set about the task of where we would go for this next step. It was only during our SCT, as I kept reading and learning that I discovered the raging debate on manage vs. cure views and some folks moving away from the "automatic SCT" approach. We stayed the course once we started it, and I can tell you that I'm still not convinced one way or the other. Nick's myeloma blog would be a great resource for you on why he chose Little Rock and the SCT route. Dave Emerson's website would be a great choice for reading about the debate and alternative routes.
Our doctor in Little Rock (where they do tandem as frontline therapy) explained their theory on multiple myeloma, which I believe is shared in the medical community, at least partly. Basically, my husband was at undetectable levels of multiple myeloma after oral treatment, but their view is, based on years and years of patients and research, he still had it and it would again proliferate, left untreated. Their reason for treating further with their particular aggressive protocol was to drive it further down and obliterate it as much as possible, but all is done quite blindly really. Further their view, and it is supported by many, but not all, is that you can continue to "manage" your multiple myeloma, but eventually it will come back, numbers will rise and you will become resistant to that particular line of treatment you are on and have to look for another. My husband was 48 and we had the prevailing view to treat it aggressively and were supported by many in our medical community to take this stance. Having said that, I know, because he is young, he can easily develop life threatening side effects later on from the treatment, even if he beats the multiple myeloma.
I could go on and on... so the upshot is there is no easy, clear cut answer or choice. Do the best you can to talk to others, get more than one opinion and try to get vastly differing opinions so you can really have choice. The good news is, the research is extremely active, interest amongst researchers is high, money is flowing, and new therapies are developing with great speed thanks to a lot of hard work and effort on the part of many.
We do not regret our decision to be aggressive. Dave's biggest issue is fatigue. He worked through the whole process and continues to work more than 40 hours a week. He doesn't have energy to do much else, but he is happy and doing well. Our decision down the road will be whether we want to continue to buy into the maintenance therapy he is now on for the next three years "at least", we were told.
Do feel free to contact directly the multiple myeloma bloggers. They are generally all to willing to have a conversation about their decision with newly diagnosed patients.
Good luck in your journey.
Lori
Forums
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habubrat - Name: Lori
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2008
- Age at diagnosis: 48
Re: stem cell transplant
Nancy and Lori, thanks so much for your responses. Decision was made last week to go with the transplant for the very reasons you have given -- get it at it's lowest point and go for the longest remission possible. Which is what we were told by treating oncologist and BMT Center. Guess I just wanted more confirmation that something new hadn't come out that said "absolutely no" on transplant. Also read everything I could find on the internet so knew about other experiences and opinions. What it came down to was Rex making the decision - knew it was probably going to have to be done at some point - so why not do it now. So the next step in our journey starts on Thursday with the shots....thanks again to both of you for sharing not only your experiences but your knowledge. Kay
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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
Kay-
Now that Rex has made his decision and the process starts next week, stop reading about other options for a while. Get through the transplant and recovery and then you can read as much as you want about the maintenance or no maintenance options.
I must say that after my transplant I was disappointed because my numbers hadn't changed from before the transplant. But, 4 months later the reports came back with changes being noted. Today, 8 months later, all of my blood test numbers are within the normal range and there is no evidence of the m-spike. I'm glad that I did the transplant.
My best to you and Rex over the next few months,
Nancy
Now that Rex has made his decision and the process starts next week, stop reading about other options for a while. Get through the transplant and recovery and then you can read as much as you want about the maintenance or no maintenance options.
I must say that after my transplant I was disappointed because my numbers hadn't changed from before the transplant. But, 4 months later the reports came back with changes being noted. Today, 8 months later, all of my blood test numbers are within the normal range and there is no evidence of the m-spike. I'm glad that I did the transplant.
My best to you and Rex over the next few months,
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
Re: stem cell transplant
newly diagnosed wrote:I was very recently diagnosed with multiple myeloma and am trying to figure out my treatment options. I've been reading a number of articles about stem cell transplants and am confused. What's the difference between an autologous and an allogenic transplant? What are the risks and benefits of each? What is the process like? How long does it take to recover?
Good Morning,
I was diagnosed March 2009, seems so long ago. Since then, I had my first auto in July 2009, relapsed, second auto in December 2009 and relapsed again. My multiple myeloma happens to be an aggressive, stubborn son of a gun, so I would ask my doctor before you start out on your journey where your multiple myeloma ranks.
Looking back I wish we (my doctor team) would have really taken a hard look at my cancer, from the beginning they said it was aggressive, but things continued to change throughout this process, the chromosomal changes, etc. I believe I was a good candidate for an allogeneic stem cell transplant from the onset. However it is not protocol for this disease as front line treatment. Now, I am waiting for approval for the allo, with three months of Revlimid prior to transplant.
My recovery from my first transplant was a breeze, the hospital stay seemed like an eternity but in reality I was only in the hospital for twelve days. At six months I was really starting to feel like myself again. I had a harder time recovering from my second.
I just recently found this web site and it will be a wonderful place for you to get information. I wish you all the best in this journey you are about to embark.
Trica
Re: stem cell transplant
Hi all,
I was officially dx in Nov. 1997. Once the doctors figured it out; they also found out all my tumors dating back to April 1990 were also concer. So I have been living with this for 21 years. I had my stem cells harvested in June 2001 in case things went bad. The stem cell are still in storage. I have never had a transplant. I'm in remission thanks to the Revlimid treatment. The current thinking is I can go on and off this treatment for the rest of my life.
I was officially dx in Nov. 1997. Once the doctors figured it out; they also found out all my tumors dating back to April 1990 were also concer. So I have been living with this for 21 years. I had my stem cells harvested in June 2001 in case things went bad. The stem cell are still in storage. I have never had a transplant. I'm in remission thanks to the Revlimid treatment. The current thinking is I can go on and off this treatment for the rest of my life.
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jturley01
Re: stem cell transplant
Kay, I couldn't agree with Nancy more on now that you have decided, take a break from all the "other" viewpoints for a while. It can have an adverse effect on your commitment and overall well being on the decision that Rex has made and your decision to support him in that effort.
Feel free to contact me if you have any specific questions or concerns during the process. You will have an increasingly important role in this and "hatting" and "training" for you, will give Rex confidence and you empowerment. You essentially are the first responder and should view yourself as such. You can do it and do it well. Take good care of your nurses, befriend them and pick their brains whenever you need too. Other caregivers will be a good lifeline and believe it or not, other patients. I learned much from them as they were ahead of us in the treatment and they helped me to understand the profound fatigue and other matters that my husband was going through. Also don't compare how he's doing in a negative way. I heard one patient, older than my husband, was walking up seven flights of stairs everyday to the transplant center and I would look over at my husband in the wheel chair and feel frustrated! Just a tip!
Best to you and Rex. I will be hoping to hear how you two are fairing.
Lori
Feel free to contact me if you have any specific questions or concerns during the process. You will have an increasingly important role in this and "hatting" and "training" for you, will give Rex confidence and you empowerment. You essentially are the first responder and should view yourself as such. You can do it and do it well. Take good care of your nurses, befriend them and pick their brains whenever you need too. Other caregivers will be a good lifeline and believe it or not, other patients. I learned much from them as they were ahead of us in the treatment and they helped me to understand the profound fatigue and other matters that my husband was going through. Also don't compare how he's doing in a negative way. I heard one patient, older than my husband, was walking up seven flights of stairs everyday to the transplant center and I would look over at my husband in the wheel chair and feel frustrated! Just a tip!
Best to you and Rex. I will be hoping to hear how you two are fairing.
Lori
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habubrat - Name: Lori
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2008
- Age at diagnosis: 48
Re: stem cell transplant
I have a ton of questions about stem cell transplants. I know some of my questions have already been answered here, but I'd like to hear a number of people's opinions and experiences, so bear with me. Also, I don't want anyone to second guess the path they took. I'm sure there are advantages to all the options. I'm just hoping to hear what factors played into your decision, what your physician told you and recommended for your case, and whether you got the results you were hoping for.
*What are the advantages of novel agents vs transplantation? What did your physician recommend? What did you choose? Did you achieve remission, and if so, for how long?
*What are the advantages of a transplant right away vs waiting until relapse? What did your physician recommend, what did you choose to do, and how effective was your choice?
*What are the advantages of one transplant vs two transplants back to back? What did you choose, etc.
*What are the advantages of an auto vs allo transplant? Has an allo been recommended for any of you? If so, what was your condition/why was one recommended in your case?
Sorry for so many questions.
*What are the advantages of novel agents vs transplantation? What did your physician recommend? What did you choose? Did you achieve remission, and if so, for how long?
*What are the advantages of a transplant right away vs waiting until relapse? What did your physician recommend, what did you choose to do, and how effective was your choice?
*What are the advantages of one transplant vs two transplants back to back? What did you choose, etc.
*What are the advantages of an auto vs allo transplant? Has an allo been recommended for any of you? If so, what was your condition/why was one recommended in your case?
Sorry for so many questions.
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PN54
Re: stem cell transplant
This is an important topic that I'm very interested in too. I know there are several clinical trials looking into a number of these questions. Unfortunately, we have to make these decisions now and don't have the leisure to wait until the trial results are released. Thanks to anyone willing to share their story. 
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josh
Re: stem cell transplant
I was diagnosed in September 2005, at age 49. Due to my age and otherwise good health, my doctor suggested I participate in a clinical trial involving two auto transplants (my sibling wasn't a match for an allo transplant). At that point, thalidomide and dex were the standard treatment other than SCT; the "newer generation" drugs weren't available yet. I had the two transplants. Five years later, I can say I am happy with my decision, and I am still in "complete" remission, though it took quite awhile to get back my stamina and resistance to infection.
I think each patient needs to make sure they have a good relationship with their doctor (that you feel comfortable honestly discussing options and outcomes), then make YOUR treatment decisions for yourself. My doctor totally supported whatever decision I made (and continuously reminded me not to let the clinical trial participation influence my decisions such as delaying or canceling the second SCT or stopping maintenance therapy due to side effects). Something she said that always stuck with me was, "make a decision that you won't second-guess later, no matter what the outcome". That really struck a chord with me.
As with most types of cancer, there is not a "one size fits all" treatment protocol, so each person needs to follow their instincts, listen to their body's signals, make a decision, and don't look back..
I think each patient needs to make sure they have a good relationship with their doctor (that you feel comfortable honestly discussing options and outcomes), then make YOUR treatment decisions for yourself. My doctor totally supported whatever decision I made (and continuously reminded me not to let the clinical trial participation influence my decisions such as delaying or canceling the second SCT or stopping maintenance therapy due to side effects). Something she said that always stuck with me was, "make a decision that you won't second-guess later, no matter what the outcome". That really struck a chord with me.
As with most types of cancer, there is not a "one size fits all" treatment protocol, so each person needs to follow their instincts, listen to their body's signals, make a decision, and don't look back..
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lyndaclark - Who do you know with myeloma?: Self
- When were you/they diagnosed?: August 2005
- Age at diagnosis: 49
Re: stem cell transplant
...and by the way, if my sibling had been a match for an allo transplant, as part of the clinical trial, I would have had an auto transplant and then a mini-allo transplant. Since my sibling wasn't a match, I had the two autos. The results of the clinical trial were recently published, which showed the auto then allo transplant patients did have more complications, though not any significantly better remission results. If you are considering an allo transplant I suggest reading those trial results. I know they were published on the Myeloma Beacon recently.
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lyndaclark - Who do you know with myeloma?: Self
- When were you/they diagnosed?: August 2005
- Age at diagnosis: 49
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