Hi,
As I mentioned in my intro. post, I was just diagnosed with multiple myeloma this past December. I'm 51, in good health other than the multiple myeloma. I don't yet have the detailed information that some of you have on all of your test results, but my oncologist told me that my bone marrow biopsy showed 15% cancer cells and that based on that and my other test results he would describe the disease in my case as "not aggressive." However, it has affected the bones of my shoulders and arms and I fractured my scapula in November (which is what led to my diagnosis.) I had radiation to treat the fracture, and I've just finished the first cycle in an 8-cycle Phase 3 clinical trial involving dexamethasone, Revlimid and Velcade. So far, so good in terms of side effects...
My question here involves the stem cell transplant and how the decision is made that the time is right to have one. My doctor told me quite positively that he is sure, based on my age, that I will have one (an autologous transplant), but could only say that it would most likely be done "within two to eight years." However, he's having me meet with the transplant doctor in a couple of weeks to discuss harvesting the stem cells quite soon. I gather that they will be stored until transplant time. I'm just wondering what might trigger the decision to go ahead with the transplant. Would it be that I'd be on maintenance therapy until it stops working, and then the transplant would be the next best option? Or is the decision based more on my general health/age--not wanting me to get too old to handle it well? I'm sure the doctors will be able to help out with some of these questions but I just thought people here might also have some insight.
I'm also wondering about the effectiveness of the transplant to keep the disease at bay as opposed to drug therapy. Is it possible to have the transplant and then not need to be on any medication for the multiple myeloma? I can see that that would be a definite plus. In my earlier conversations with my doctor, he told me that he believes that only the allogenic transplant is a "curative" option at this point. But he feels that due to the high risk factors that this would not be an option we'd be considering, at least not now.
Sorry, lots of vague questions! Thank you for any insight!
Karen
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6 posts
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Re: Transplant in the future-timing questions
Karen, more than likely you will get several replies ... and you will find a number of posts on this very topic within the last few months. We asked the same questions when Rex needed to take the next step, here is what I came away with - stem cell transplant is the normal protocal; some institutions hit it very hard (Lori, Sean, others can speak to what they do in Arkansas); others take a less aggressive approach with good results (get those stem cells harvested early); some recommend transplant when M spike is very low; some recommend the novel therapies only - I think you get the idea. At the end of the day, it's up to the patient to make the decision - and hopefully you have a healthcare team you totally trust to aid with questions and concerns. Everyone's situation is different so you must do what you feel is right for you. And as several told us, once you make the decision, focus on that and not the other options - don't second guess yourself. Keep abreast of the latest news and clinical trial results - they will come in handy when having conversations with your docs. Our very best to you as you continue your treatments - everyone on this site is so good about sharing - we learn from each other - so keep on asking questions. We all support each other. 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: Transplant in the future-timing questions
Hi Karen,
As you've probably gathered by now, most myeloma patients who are physically eligible for a stem cell transplant end up undergoing one (or more) at some point or another. However, the timing of the transplant depends on the preferences of the physician and also the patient.
Transplant-eligible patients are generally treated with an induction therapy (initial treatment with one or more novel agents) to knock down the myeloma. Most patients then have their stem cells collected and stored, often after the 4th cycle. (If you try to collect stem cells after many cycles of treatment, especially with Revlimid, sometimes patients have trouble collecting enough stem cells for transplantation. So it's generally recommended to collect early, even if you aren't planning on a stem cell transplant - just in case.)
This is then where opinions differ. Many myeloma specialists believe that transplant-eligible patients should immediately receive one or sometimes even two stem cell transplants. Their opinion is that the stem cell transplant is most effective when the myeloma levels are low. Some even use a second transplant to "consolidate" the response to the first transplant. (They're using novel agents and multiple transplants to try to completely wipe out the myeloma cells. But this can also take a huge toll on the patient physically.)
Many patients also prefer doing the transplant right away with the hopes of then being drug free for a year or more until their first relapse. However, recent research has been showing that maintenance therapy (long-term, low-dose treatment with a novel agent, particularly Revlimid) significantly extends progression-free survival. Therefore, many patients don't have the drug-free holiday anymore, even after transplant. Not everyone undergoes maintenance, though, depending on preference and drug tolerability.
Other specialists believe that the transplant can or should be saved until the first relapse. Many patients like this idea too: wait and see if it's really necessary. Also now with maintenance therapy becoming nearly standard, some feel why undergo the transplant right away if you're going to have to be on drugs either way.
To add more to the pile to consider, there are clinical trial results to support both of these decisions.
A study presented at ASH this past year showed that more patients in your age range were alive after 3 years if they underwent an "early" stem cell transplant (after 4 cycles of induction therapy). The rest of the patients could continue on Revlimid and dexamethasone therapy or discontinue therapy all together, but they could also undergo a transplant later (presumably if they relapsed). These results should be taken with a grain of salt though. The patients got to choose whether or not they wanted the transplant right away (they weren't randomized), so the results could be biased. Additionally, this study doesn't directly compare the survival of patients who underwent a transplant right away with those who underwent a transplant later. Maybe they do just as well as those who underwent a transplant right away. (Here's the study if you want more details: https://myelomabeacon.org/news/2010/12/17/early-stem-cell-transplantation-may-improve-survival-in-newly-diagnosed-multiple-myeloma-patients-ash-2010/ )
On the other hand, preliminary results from several studies presented at ASCO this past summer showed that treatment with novel agents may be as effective as stem cell transplantation. These are just preliminary results. We'll have to watch and see what the long term results show. This is one more reason why some patients choose to put off the transplant until later. Some physicians no longer use stem cell transplants because of this data, but most say that stem cell transplantation is still the standard of care for myeloma and that they will won't abandon it just yet. (Here are the studies: https://myelomabeacon.org/news/2010/06/16/treatment-of-myeloma-with-novel-agents-may-be-as-effective-as-stem-cell-transplantation-part-1-melphalan-prednisone-revlimid-asco-2010/ , https://myelomabeacon.org/news/2010/06/16/treatment-of-myeloma-with-novel-agents-may-be-as-effective-as-stem-cell-transplantation-part-2-revlimid-velcade-dexamethasone-asco-2010/ )
You're young enough, that your age will most likely not play a role in your decision of when to transplant. Patients well into their 60's or sometimes even early 70's can be eligible for a stem cell transplant as long as their health is good other than the myeloma.
It sounds like your physician isn't in favor of an allogeneic transplant. Most physicians reserve those only for patients who have relapsed many times or who don't responded to a number of treatments because of the risks associated with the procedure. In case you're curious though, here's the study that shows allo transplants do not extend survival compared to auto transplants (https://myelomabeacon.org/news/2010/12/06/donor-stem-cell-transplants-come-up-short-as-second-transplant-option-in-multiple-myeloma-patients-ash-2010/ ).
There's no right or wrong answer here. There's much to support either timing, and patient preference goes a long way. So as Kay said, once you decide whether to undergo a transplant now or later, know that you made the best decision you could, and don't second guess it.
Good luck!
As you've probably gathered by now, most myeloma patients who are physically eligible for a stem cell transplant end up undergoing one (or more) at some point or another. However, the timing of the transplant depends on the preferences of the physician and also the patient.
Transplant-eligible patients are generally treated with an induction therapy (initial treatment with one or more novel agents) to knock down the myeloma. Most patients then have their stem cells collected and stored, often after the 4th cycle. (If you try to collect stem cells after many cycles of treatment, especially with Revlimid, sometimes patients have trouble collecting enough stem cells for transplantation. So it's generally recommended to collect early, even if you aren't planning on a stem cell transplant - just in case.)
This is then where opinions differ. Many myeloma specialists believe that transplant-eligible patients should immediately receive one or sometimes even two stem cell transplants. Their opinion is that the stem cell transplant is most effective when the myeloma levels are low. Some even use a second transplant to "consolidate" the response to the first transplant. (They're using novel agents and multiple transplants to try to completely wipe out the myeloma cells. But this can also take a huge toll on the patient physically.)
Many patients also prefer doing the transplant right away with the hopes of then being drug free for a year or more until their first relapse. However, recent research has been showing that maintenance therapy (long-term, low-dose treatment with a novel agent, particularly Revlimid) significantly extends progression-free survival. Therefore, many patients don't have the drug-free holiday anymore, even after transplant. Not everyone undergoes maintenance, though, depending on preference and drug tolerability.
Other specialists believe that the transplant can or should be saved until the first relapse. Many patients like this idea too: wait and see if it's really necessary. Also now with maintenance therapy becoming nearly standard, some feel why undergo the transplant right away if you're going to have to be on drugs either way.
To add more to the pile to consider, there are clinical trial results to support both of these decisions.
A study presented at ASH this past year showed that more patients in your age range were alive after 3 years if they underwent an "early" stem cell transplant (after 4 cycles of induction therapy). The rest of the patients could continue on Revlimid and dexamethasone therapy or discontinue therapy all together, but they could also undergo a transplant later (presumably if they relapsed). These results should be taken with a grain of salt though. The patients got to choose whether or not they wanted the transplant right away (they weren't randomized), so the results could be biased. Additionally, this study doesn't directly compare the survival of patients who underwent a transplant right away with those who underwent a transplant later. Maybe they do just as well as those who underwent a transplant right away. (Here's the study if you want more details: https://myelomabeacon.org/news/2010/12/17/early-stem-cell-transplantation-may-improve-survival-in-newly-diagnosed-multiple-myeloma-patients-ash-2010/ )
On the other hand, preliminary results from several studies presented at ASCO this past summer showed that treatment with novel agents may be as effective as stem cell transplantation. These are just preliminary results. We'll have to watch and see what the long term results show. This is one more reason why some patients choose to put off the transplant until later. Some physicians no longer use stem cell transplants because of this data, but most say that stem cell transplantation is still the standard of care for myeloma and that they will won't abandon it just yet. (Here are the studies: https://myelomabeacon.org/news/2010/06/16/treatment-of-myeloma-with-novel-agents-may-be-as-effective-as-stem-cell-transplantation-part-1-melphalan-prednisone-revlimid-asco-2010/ , https://myelomabeacon.org/news/2010/06/16/treatment-of-myeloma-with-novel-agents-may-be-as-effective-as-stem-cell-transplantation-part-2-revlimid-velcade-dexamethasone-asco-2010/ )
You're young enough, that your age will most likely not play a role in your decision of when to transplant. Patients well into their 60's or sometimes even early 70's can be eligible for a stem cell transplant as long as their health is good other than the myeloma.
It sounds like your physician isn't in favor of an allogeneic transplant. Most physicians reserve those only for patients who have relapsed many times or who don't responded to a number of treatments because of the risks associated with the procedure. In case you're curious though, here's the study that shows allo transplants do not extend survival compared to auto transplants (https://myelomabeacon.org/news/2010/12/06/donor-stem-cell-transplants-come-up-short-as-second-transplant-option-in-multiple-myeloma-patients-ash-2010/ ).
There's no right or wrong answer here. There's much to support either timing, and patient preference goes a long way. So as Kay said, once you decide whether to undergo a transplant now or later, know that you made the best decision you could, and don't second guess it.
Good luck!
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Julie Shilane - Name: Julie Shilane, Beacon Staff
Re: Transplant in the future-timing questions
Thank you so much to both of you. Kay, your advice makes a lot of sense. And Julie, all of that information was very helpful! I can see that I'm going to have to really think about this and make sure that I understand what the doctor is thinking and what his recommendations regarding my treatment are based on. Of course, I'm still in the early stages of treatment so we don't even know yet how I'm responding. Time will tell! I'm sure the transplant doctor will also have a lot of helpful insight. I'm also planning to find out how many transplants are done at my medical center (I'm being treated at the Wilmot Cancer Center at the University of Rochester/Strong Memorial Hospital in Rochester, NY.)
As you may guess I am quite apprehensive about the transplant process, although if we decide it's the best hope for my longer-term survival, of course we will go with that option. It's just still hard for me to think of myself as needing to go through something so physically draining when I've always been so healthy. But this is my new reality and I suppose I will get used to it. I have two sons, ages 16 and 18, and a husband and a dog and a nice life that I really hope to continue living for the forseeable future! So of course I will do everything possible to keep this under control. I suspect that like anything else, I will just deal with the transplant when it is actually happening and I will find that I can get through it.
Thanks again!
As you may guess I am quite apprehensive about the transplant process, although if we decide it's the best hope for my longer-term survival, of course we will go with that option. It's just still hard for me to think of myself as needing to go through something so physically draining when I've always been so healthy. But this is my new reality and I suppose I will get used to it. I have two sons, ages 16 and 18, and a husband and a dog and a nice life that I really hope to continue living for the forseeable future! So of course I will do everything possible to keep this under control. I suspect that like anything else, I will just deal with the transplant when it is actually happening and I will find that I can get through it.
Thanks again!
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Karen - Name: Karen
- When were you/they diagnosed?: December 2010
- Age at diagnosis: 51
Re: Transplant in the future-timing questions
Karen-
I was diagnosed 3 years ago when my bloodwork for surgery came back abnormal. I was diagnosed with Smoldering Myeloma at the time with anemia being the symptom that I had. I had no other symptoms until suddenly I developed a pathologic fracture of my humerus and shoulder a year later. A full body scan at that time revealed that in the last year I had developed multiple bone lesions throughout my body.
Because of the fractures and the numerous bone lesions, my oncologist started treatment with Revlimid and Dexamethasone immediately. He recommended that I have an autologous transplant after about 6 cycles of treatment. He said that he was recommending the transplant now because of the quick progression of my disease from diagnosis to fracture - 1 year.
I had the transplant 1 year ago and am doing well. All of my blood test results are within the normal range. I am not taking any maintenance drugs because I had a bad reaction to them when I started them after the transplant. I missed 3 1/2 months of work to do the transplant.
For me it was the right decision because I plan to work as long as I can. I have a relatively physical job that requires me to be able to use the strength in my arms quite a bit. The arm and shoulder fracture really scared me. I wasn't sure that the fractures would heal well enough for me to be able to return to my job. My orthopedic surgeon wasn't at all hopefull that the fractures would heal. But, they did. So, I felt that the transplant was the best option for me.
Each of us has different needs and wants for our lives. Transplant may not fit into your life plan now, or in the next year or 2. Continued drug treatment may work well for you. You need to learn what all of the options are and then decide on what feels to be right for you and your situation. Whatever you decide will be the right decision for you and your family.
Nancy
I was diagnosed 3 years ago when my bloodwork for surgery came back abnormal. I was diagnosed with Smoldering Myeloma at the time with anemia being the symptom that I had. I had no other symptoms until suddenly I developed a pathologic fracture of my humerus and shoulder a year later. A full body scan at that time revealed that in the last year I had developed multiple bone lesions throughout my body.
Because of the fractures and the numerous bone lesions, my oncologist started treatment with Revlimid and Dexamethasone immediately. He recommended that I have an autologous transplant after about 6 cycles of treatment. He said that he was recommending the transplant now because of the quick progression of my disease from diagnosis to fracture - 1 year.
I had the transplant 1 year ago and am doing well. All of my blood test results are within the normal range. I am not taking any maintenance drugs because I had a bad reaction to them when I started them after the transplant. I missed 3 1/2 months of work to do the transplant.
For me it was the right decision because I plan to work as long as I can. I have a relatively physical job that requires me to be able to use the strength in my arms quite a bit. The arm and shoulder fracture really scared me. I wasn't sure that the fractures would heal well enough for me to be able to return to my job. My orthopedic surgeon wasn't at all hopefull that the fractures would heal. But, they did. So, I felt that the transplant was the best option for me.
Each of us has different needs and wants for our lives. Transplant may not fit into your life plan now, or in the next year or 2. Continued drug treatment may work well for you. You need to learn what all of the options are and then decide on what feels to be right for you and your situation. Whatever you decide will be the right decision for you and your family.
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: Transplant in the future-timing questions
Nancy, thanks so much for sharing your information. It definitely sounds like the transplant was the right option for you and I'm so glad you are doing well! Your situation sounds somewhat similar to mine, although I really don't know how much time went by between when I developed multiple myeloma and when I was diagnosed. I wasn't diagnosed until I had already had a fracture (my scapula) and at that time the scans showed lesions in my shoulders and arms. However, the doctor has said that it doesn't appear to be acting aggressively at this time. For all I know it could have been smoldering for many years...I have had blood work done over the years during routine physicals but perhaps they weren't checking for these particular markers.
The fracture in the scapula has healed quite a bit--I've almost returned to normal range of motion in my arm and shoulder--although the orthopedic oncologist told me at our last appointment that it's not completely healed yet. I am nervous about fracturing anything else and was told to avoid strenuous use of my arms & shoulders, at least for now. Fortunately I work part-time from home and it's all computer work,, so as long as I can type (I actually couldn't for a while) I'm OK.
I'm meeting with the transplant doctor on 2/9 to go over plans for the stem cell harvest, so I think talking to him will help clear up some of my questions, as well as talking to my hematology oncologist. I think things will become a bit clearer as time goes by and we see how I'm responding to the dex/Revlimid/Velcade.
Thanks again!
Karen
The fracture in the scapula has healed quite a bit--I've almost returned to normal range of motion in my arm and shoulder--although the orthopedic oncologist told me at our last appointment that it's not completely healed yet. I am nervous about fracturing anything else and was told to avoid strenuous use of my arms & shoulders, at least for now. Fortunately I work part-time from home and it's all computer work,, so as long as I can type (I actually couldn't for a while) I'm OK.
I'm meeting with the transplant doctor on 2/9 to go over plans for the stem cell harvest, so I think talking to him will help clear up some of my questions, as well as talking to my hematology oncologist. I think things will become a bit clearer as time goes by and we see how I'm responding to the dex/Revlimid/Velcade.
Thanks again!
Karen
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Karen - Name: Karen
- When were you/they diagnosed?: December 2010
- Age at diagnosis: 51
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