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Re: How did you decide whether to have a SCT or not?
It should be noted that there can be long lasting side effects from the SCT. I'm two years post SCT and still suffer from the neuropathy I got during the SCT. It's really impossible to tell if the SCT made a difference or not, as my numbers were exactly the same pre- and post-SCT.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: How did you decide whether to have a SCT or not?
Interesting discussion.
I'm 57, have IgA myeloma. Asymptomatic, no CRAB symptoms, plasma at 23% but high IgA FLC, all other blood work was in range. So I guess, based on the new criteria, that qualified me as myeloma instead of smoldering.
It was recommended that I get high-dose chemo followed by the stem cell transplant (and that was the only path recommended to me). I'm going for a second opinion tomorrow. I'm leaning towards not having the transplant because I can't be away from my business (self employed) for that period of time. But the biggest factor deterring me is the fact that I'm feeling fine and asymptomatic .
Thanks for all the great posts.
I'm 57, have IgA myeloma. Asymptomatic, no CRAB symptoms, plasma at 23% but high IgA FLC, all other blood work was in range. So I guess, based on the new criteria, that qualified me as myeloma instead of smoldering.
It was recommended that I get high-dose chemo followed by the stem cell transplant (and that was the only path recommended to me). I'm going for a second opinion tomorrow. I'm leaning towards not having the transplant because I can't be away from my business (self employed) for that period of time. But the biggest factor deterring me is the fact that I'm feeling fine and asymptomatic .
Thanks for all the great posts.
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Kebo
Re: How did you decide whether to have a SCT or not?
Peggy, don't be bullied. As a former stem cell transplant recipient, the best advice I can tell you is this.
A SCT is just another choice of treatment. It is no better or more effective or better than the many novel therapy treatments available to us multiple myeloma patients.
An SCT is not a cure, but it is the most invasive and requires the longest recovery time of any treatment. Your life will change forever and it will take at least two years to recover.
A SCT is just another choice of treatment. It is no better or more effective or better than the many novel therapy treatments available to us multiple myeloma patients.
An SCT is not a cure, but it is the most invasive and requires the longest recovery time of any treatment. Your life will change forever and it will take at least two years to recover.
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joneman
Re: How did you decide whether to have a SCT or not?
Hi PeggyB,
Joneman's and JBarnes' posts are helpful to us all, pointing out their personal experience. In this discussion and in a different topic where I questioned whether it is even worthwhile to harvest my stem cells, since I am already 68, almost. Therefore, my personal tilt away from ASCT (even the stem cell harvest) is already stated. I also am lucky to have just the trisomy 11.
The cytogenetics conclusion was:
Trisomy 11 is likely as a part of a hyperdiploid clone which is commonly seen in multiple myeloma. The presence of a hyperdiploidy or concurrent trisomies may have a better impact on prognosis.
All my other cytogenetic tests were negative. Therefore, in the Mayo Clinic's recommended treatment for myeloma patients, I am in the standard-risk, 'trisomies only' sub-category and only harvesting of the stem cells is recommended. Hence, my current plan of weighing if the "insurance" of the stem cell harvest is even worth the week long hassle. But that is my own and very subjective risk-reward analysis.
However, the intermediate-risk and high-risk patients may not have any other choice (at least till newer drugs or non-invasive procedures can be developed and available). Some of the patients cannot / could not tolerate the chemo, even in the maintenance phase, as Tropic Diver had stated.
The Beacon Staff gave us the link to (and Multibilly or some other very helpful poster recently referred to it):
http://msmart.org/newly%20diagnosed%20myeloma.pdf
in which, the Mayo Clinic's flow chart's "recommended treatment" for various types of myeloma, one can see that the 'intermediate and high-risk" patients may have no choice but to opt for the transplant. Unfortunately, there are so many nasty myelomas out there.
K_Shash
Joneman's and JBarnes' posts are helpful to us all, pointing out their personal experience. In this discussion and in a different topic where I questioned whether it is even worthwhile to harvest my stem cells, since I am already 68, almost. Therefore, my personal tilt away from ASCT (even the stem cell harvest) is already stated. I also am lucky to have just the trisomy 11.
The cytogenetics conclusion was:
Trisomy 11 is likely as a part of a hyperdiploid clone which is commonly seen in multiple myeloma. The presence of a hyperdiploidy or concurrent trisomies may have a better impact on prognosis.
All my other cytogenetic tests were negative. Therefore, in the Mayo Clinic's recommended treatment for myeloma patients, I am in the standard-risk, 'trisomies only' sub-category and only harvesting of the stem cells is recommended. Hence, my current plan of weighing if the "insurance" of the stem cell harvest is even worth the week long hassle. But that is my own and very subjective risk-reward analysis.
However, the intermediate-risk and high-risk patients may not have any other choice (at least till newer drugs or non-invasive procedures can be developed and available). Some of the patients cannot / could not tolerate the chemo, even in the maintenance phase, as Tropic Diver had stated.
The Beacon Staff gave us the link to (and Multibilly or some other very helpful poster recently referred to it):
http://msmart.org/newly%20diagnosed%20myeloma.pdf
in which, the Mayo Clinic's flow chart's "recommended treatment" for various types of myeloma, one can see that the 'intermediate and high-risk" patients may have no choice but to opt for the transplant. Unfortunately, there are so many nasty myelomas out there.
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: How did you decide whether to have a SCT or not?
I was diagnosed in October 2014 at the age of 65. I responded exceptionally well to Velcade and dexamethasone (Decadron) cycle (on it for 3 months). However, I am still affected by neuropathy.
My doctor wants to start the transplant process in a week, and I don't feel physically ready, but they are pushing me to proceed. He constantly reminds me of the possibility that the myeloma cells might come back.
Another thing that scares me to death is having another bone marrow biopsy performed. They won't begin the harvesting of cells without it, even though my serum labs have so few diseased cells they can no longer measure them.
My doctor wants to start the transplant process in a week, and I don't feel physically ready, but they are pushing me to proceed. He constantly reminds me of the possibility that the myeloma cells might come back.
Another thing that scares me to death is having another bone marrow biopsy performed. They won't begin the harvesting of cells without it, even though my serum labs have so few diseased cells they can no longer measure them.
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wella
Re: How did you decide whether to have a SCT or not?
Hello Wella,
What a difference an oncologist can make!
My own oncologist seems almost reluctant to recommend a stem cell transplant. However, one of his younger colleagues, who had to see me for a follow-up when my own oncologist was sick, told me the stem cell transplant is a "standard of care" and I should be preparing for it. It seems that the newly trained and university oncologists are all for transplant first, ask your questions later!
A couple of points to consider:
And I, too, do not want any more bone marrow biopsies. It was recommended to me in another thread here that I should ask for a general anesthesia the next time. You may want to consider that approach. What was the serum test that shows the level of the diseased cells? I would appreciate knowing that alternative for my next set of tests, at the end of my induction therapy.
Best of luck in making the 'right' decision for yourself. It is YOUR decision.
K_Shash
What a difference an oncologist can make!
My own oncologist seems almost reluctant to recommend a stem cell transplant. However, one of his younger colleagues, who had to see me for a follow-up when my own oncologist was sick, told me the stem cell transplant is a "standard of care" and I should be preparing for it. It seems that the newly trained and university oncologists are all for transplant first, ask your questions later!
A couple of points to consider:
- Most of the literature says that a transplant does not add to the patient's life expectancy. It may give some patients a drug-free 3 to 5 years, though. Some cases need a transplant, either due to complications or due to the intolerance of the chemo drugs. That is not the case for you or me.
- The multiple myeloma relapses 3 to 5 years after the transplant, and most patients go on the maintenance therapy, if they did not opt for one for prevention already.
And I, too, do not want any more bone marrow biopsies. It was recommended to me in another thread here that I should ask for a general anesthesia the next time. You may want to consider that approach. What was the serum test that shows the level of the diseased cells? I would appreciate knowing that alternative for my next set of tests, at the end of my induction therapy.
Best of luck in making the 'right' decision for yourself. It is YOUR decision.
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: How did you decide whether to have a SCT or not?
I was scheduled to do harvesting of stem cells next week and just found out that my insurance (Tricare) will not cover storage, so it's canceled. I'm going to see my doctor at UCSF on the 13th to discuss how we should proceed.
Now that I don't have the option of collection and storing cells, does that change the game plan? So many questions.
I have seen 3 doctors, my local hematologist / oncologist, the specialist in SF, and one in Seattle where we have a second home. None of them are really pushing for transplant at this time, but they did all recommend harvesting now and watching the numbers carefully.
I was told that I will need to be on maintenance treatment after the transplant, so I don't see a real benefit there. We'll see what the doctor says at my next visit. I'm going to come in with a written list of all the questions I can think of.
Thank you everyone for your input.
Now that I don't have the option of collection and storing cells, does that change the game plan? So many questions.
I have seen 3 doctors, my local hematologist / oncologist, the specialist in SF, and one in Seattle where we have a second home. None of them are really pushing for transplant at this time, but they did all recommend harvesting now and watching the numbers carefully.
I was told that I will need to be on maintenance treatment after the transplant, so I don't see a real benefit there. We'll see what the doctor says at my next visit. I'm going to come in with a written list of all the questions I can think of.
Thank you everyone for your input.
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PeggyB - Name: Peggy B
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 60
Re: How did you decide whether to have a SCT or not?
Peggy,
Is there any possibility you can do the transplant somewhere else? The hospital where I did my transplant stores my extra stem cells for no extra charge (as far as I know); at least I do not have any insurance charges for the storage of them anyway.
Is there any possibility you can do the transplant somewhere else? The hospital where I did my transplant stores my extra stem cells for no extra charge (as far as I know); at least I do not have any insurance charges for the storage of them anyway.
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: How did you decide whether to have a SCT or not?
Hello Peggy,
If I understand it right, your insurance would pay for the harvest, but not the storage?
With all the advancement in high tech, the liquid nitrogen storage cost may be nominal and you may have an option to bear the cost for a few years. I am assuming a couple of things here; the insurance would pay for the harvesting, and that the annual storage cost is reasonable.
Also, you may want to look up the thread on "Medicare and Stem Cell Harvesting." I vaguely remember someone suggesting that one can start the transplant procedure but cancel it after the harvest. Then the hospital may be forced to store the stem cells.
Of course, if my HMO has stopped allowing the stem cell harvesting and storage, as my oncologist indicated, it is possible that after finding that numerous harvested cells stored at some expense are never being used, many HMO's are following Medicare's lead.
The UCSF expert (the well known Dr. Wolf, I believe) should also be able to explain why it is recommended to harvest the stem cells early, generally right after the induction therapy.
As I mentioned in my earlier post on this discussion, I was leaning against harvesting and storing my stem cells; in my particular case. However, I am not too happy that I would not have that option.
K_Shash
If I understand it right, your insurance would pay for the harvest, but not the storage?
With all the advancement in high tech, the liquid nitrogen storage cost may be nominal and you may have an option to bear the cost for a few years. I am assuming a couple of things here; the insurance would pay for the harvesting, and that the annual storage cost is reasonable.
Also, you may want to look up the thread on "Medicare and Stem Cell Harvesting." I vaguely remember someone suggesting that one can start the transplant procedure but cancel it after the harvest. Then the hospital may be forced to store the stem cells.
Of course, if my HMO has stopped allowing the stem cell harvesting and storage, as my oncologist indicated, it is possible that after finding that numerous harvested cells stored at some expense are never being used, many HMO's are following Medicare's lead.
The UCSF expert (the well known Dr. Wolf, I believe) should also be able to explain why it is recommended to harvest the stem cells early, generally right after the induction therapy.
As I mentioned in my earlier post on this discussion, I was leaning against harvesting and storing my stem cells; in my particular case. However, I am not too happy that I would not have that option.
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: How did you decide whether to have a SCT or not?
People have made some good points.
I wondered about canceling or postponing the transplant after harvesting, because I believe Tricare would pay for the harvesting but doesn't want to pay for long-term storage.
So I was wondering what do they do with the people who collect enough cells for 2 or 3 transplants. Do they make them throw them away and start all over for the second transplant?
I will also ask how much it would cost to pay for storage ourselves. I do have the option to have the procedure done in Seattle and will inquire as to what the cost of storage is there.
I'm seeing Dr. Wolf next week and will discuss all these options with him.
I wondered about canceling or postponing the transplant after harvesting, because I believe Tricare would pay for the harvesting but doesn't want to pay for long-term storage.
So I was wondering what do they do with the people who collect enough cells for 2 or 3 transplants. Do they make them throw them away and start all over for the second transplant?
I will also ask how much it would cost to pay for storage ourselves. I do have the option to have the procedure done in Seattle and will inquire as to what the cost of storage is there.
I'm seeing Dr. Wolf next week and will discuss all these options with him.
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PeggyB - Name: Peggy B
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 60
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