I was diagnosed with Stage 2 multiple myeloma in Feb 2009. I started on VRD plus Aredia at that time. I did not have an SCT then and am still in a remissive state. I am on a maintenance level of VD once every 2 weeks plus Aredia once every 3 months.
Part of my decision tree had to do with results and maintenance. Since I had a CR without the SCT, both my oncologist and I felt that the stem cell transplant was not going to improve the results.
Secondly, even if I had the SCT, I would more likely than not been put on a maintenance protocol similar to what I am on now. So the risk appeared to me to be higher than the benefit and my oncologist agreed.
This disease impacts everyone differently and the course of treatment must be tailored to the individual. So what may work for me, may not work for someone else. What may seem as overkill and unnecessary for me, may be what is needed for you.
An autologous stem cell transplant is not going to cure you. It may or may not heighten the response and may or may not delay relapse. Some people after an SCT and short maintenance may be able to take a holiday from the chemo, many do not.
Ron
Forums
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Is/was SCT in your treatment plan from the start?
Rather than 'planning' on a stem cell transplant, I think that more to the point is how one does with chemotherapy before the auto stem cell transplant. There are many articles on the Beacon site which discuss the role of stem cell transplantation. I had a transplant, and it did seem to work well for me, but I also had Velcade and Revlimid as 'novel' agents at that time. I can't really know how much the transplant helped in giving me a long remission. I have been away from taking any chemo drugs for almost three years now. Of course, that may change for me too! I am not under any illusions about the real possibility of a relapse that would require treatment again.
From my reading here it seems that many patients do get their stem cells harvested and stored as a hedge against relapse. Then they take their treatments with the newer drugs and see if they can get to the point of a remission.
I am not sure whether or not patients who have been treated with novel agents and have attained a CR are then having no drugs at all! Perhaps that is not an idea that has come time to come to fruition yet.
Compared to when I was diagnosed, in 2009, there are new treatments available, so my experience and treatments shouldn't be taken as a norm, I think! This is especially true in the US, where there have been new drugs approved for the treatment of multiple myeloma over the last 3 years.
There seems also to be an issue of chromosomal high risk myeloma. The recommendations for taking HD chemo such as the malphalan used in a transplant may be contra-indicated for some of those patients! So there is a lot to think about here, and lots of opportunity to study as well.
From my reading here it seems that many patients do get their stem cells harvested and stored as a hedge against relapse. Then they take their treatments with the newer drugs and see if they can get to the point of a remission.
I am not sure whether or not patients who have been treated with novel agents and have attained a CR are then having no drugs at all! Perhaps that is not an idea that has come time to come to fruition yet.
Compared to when I was diagnosed, in 2009, there are new treatments available, so my experience and treatments shouldn't be taken as a norm, I think! This is especially true in the US, where there have been new drugs approved for the treatment of multiple myeloma over the last 3 years.
There seems also to be an issue of chromosomal high risk myeloma. The recommendations for taking HD chemo such as the malphalan used in a transplant may be contra-indicated for some of those patients! So there is a lot to think about here, and lots of opportunity to study as well.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Is/was SCT in your treatment plan from the start?
I'm struggling with this very decision myself.
I was diagnosed with multiple myeloma in September of 2012. I was in very bad shape at the time. The doctor at UAMS said I would probably not survive the process of having a transplant. and so I was giving the treatment of VRD, which I have been on to this day.
I have gotten to a very good partial remission. Now the doctor is starting to want me to consider having the transplant done in the very near future. I am considered a low risk chromasomally wise. So I'm wondering why I can't have my stem cells collected and just keep doing what I am (RVD) and wait until i relapse to do the transplant.
Your thoughts would be appreciated.
I was diagnosed with multiple myeloma in September of 2012. I was in very bad shape at the time. The doctor at UAMS said I would probably not survive the process of having a transplant. and so I was giving the treatment of VRD, which I have been on to this day.
I have gotten to a very good partial remission. Now the doctor is starting to want me to consider having the transplant done in the very near future. I am considered a low risk chromasomally wise. So I'm wondering why I can't have my stem cells collected and just keep doing what I am (RVD) and wait until i relapse to do the transplant.
Your thoughts would be appreciated.
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gmarv - Name: marvin
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: aug.2012
- Age at diagnosis: 57
Re: Is/was SCT in your treatment plan from the start?
From the start I decided I would not have a stem cell transplant. I had been in perfect health and great physical shape and felt really good. (I had been diagnosed thru routine labs done on my annual physical and not because I was having problems.) I couldn't see myself going thru the SCT and forfeiting my quality of life, if only for a few months .
In addition, knowing the possibility that the SCT could compromise my health long term, I sought out Dr. Berenson . He educated me in the pros and cons of both options and I chose to stick with my initial decision to treat with chemo vs. SCT.
Under his recommendations, I have achieved full stringent response and have felt great throughout the chemo and am now into the maintenance chemo program. I remain physically active with NO adverse reaction to chemo.
I would emphasize that one needs to educate themselves on the options for treatment and the PATIENT must be the one to make the decision as to choosing the course of treatment. Confidence in their decision of how to treat promotes peace of mind and that contributes how one tolerates the treatment.
In addition, knowing the possibility that the SCT could compromise my health long term, I sought out Dr. Berenson . He educated me in the pros and cons of both options and I chose to stick with my initial decision to treat with chemo vs. SCT.
Under his recommendations, I have achieved full stringent response and have felt great throughout the chemo and am now into the maintenance chemo program. I remain physically active with NO adverse reaction to chemo.
I would emphasize that one needs to educate themselves on the options for treatment and the PATIENT must be the one to make the decision as to choosing the course of treatment. Confidence in their decision of how to treat promotes peace of mind and that contributes how one tolerates the treatment.
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torimooney - Name: tori
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: apr 2012
- Age at diagnosis: 64
Re: Is/was SCT in your treatment plan from the start?
Hi Annie B,
From the start I wanted only palliative care but then posts of some very helpful members changed my mind. I decided to get only "chemo", albeit low dose, e.g. non-aggressive, but to forgo a stem cell transplant.
I purposely delayed radiation for 6 weeks after diagnosis (which was already 4 weeks after I had had surgery for a plasmacytoma on the cervical spine). Radiation lasted for 3 weeks. Then I waited an additional 3 weeks before starting induction therapy.
The doctors were surprised that I didn't start everything "yesterday", but I did lots of research before I made up my mind on anything. One doctor wrote, she doesn't have any pain and so is not motivated at this time to start .... (how enlightening!)
I am your husband's age and started induction therapy with 25 mg Revlimid 21 x on and 7 x off; now I am down to 15 mg as I became anemic and then dexamethasone only once a week 20 mg. I was not interested in Velcade because of the highly likely neuropathy side effects and I had enough of this prior to surgery.
I give you the link to the palliative discussion here:
https://myelomabeacon.org/forum/palliative-treatment-from-the-onset-t1617.html
and here is the one about - no SCTP, chemo only treatment
https://myelomabeacon.org/forum/no-sctp-chemo-only-treatment-t1686.html
I believe in quality vs quantity for life and so far have not regretted it. When my appointed time comes - it comes! So far no one has lived forever - that I know of
Kate
From the start I wanted only palliative care but then posts of some very helpful members changed my mind. I decided to get only "chemo", albeit low dose, e.g. non-aggressive, but to forgo a stem cell transplant.
I purposely delayed radiation for 6 weeks after diagnosis (which was already 4 weeks after I had had surgery for a plasmacytoma on the cervical spine). Radiation lasted for 3 weeks. Then I waited an additional 3 weeks before starting induction therapy.
The doctors were surprised that I didn't start everything "yesterday", but I did lots of research before I made up my mind on anything. One doctor wrote, she doesn't have any pain and so is not motivated at this time to start .... (how enlightening!)
I am your husband's age and started induction therapy with 25 mg Revlimid 21 x on and 7 x off; now I am down to 15 mg as I became anemic and then dexamethasone only once a week 20 mg. I was not interested in Velcade because of the highly likely neuropathy side effects and I had enough of this prior to surgery.
I give you the link to the palliative discussion here:
https://myelomabeacon.org/forum/palliative-treatment-from-the-onset-t1617.html
and here is the one about - no SCTP, chemo only treatment
https://myelomabeacon.org/forum/no-sctp-chemo-only-treatment-t1686.html
I believe in quality vs quantity for life and so far have not regretted it. When my appointed time comes - it comes! So far no one has lived forever - that I know of
Kate
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Kate - Name: Kate
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Dec. 2012
Re: Is/was SCT in your treatment plan from the start?
I was diagnosed in December 2002 after having a plasmacytoma (tumor) removed from my chest. Following radiation (3 cycles) I had a couple of years treatment free and decided I would not go the sct route. I see sawed between remission and relapse .
The new drugs worked well it seemed until early 2012. The multiple myeloma became more aggressive, my oncologist's thesis was, we had this sct weapon, lets use it while you're young. (Rodney Dangerfield ish) So, at 63, 10 years out from dx, I went through the sct process in Sept 2012. Took me a year to where I felt strenght coming back.
Age has a lot to do with recovery, I think. I'm currently on 10mg of rev, a maintenance level and doing well. I will tell you that I will not have a second transplant because a year's recovery is too high a price at my age.
The new drugs worked well it seemed until early 2012. The multiple myeloma became more aggressive, my oncologist's thesis was, we had this sct weapon, lets use it while you're young. (Rodney Dangerfield ish) So, at 63, 10 years out from dx, I went through the sct process in Sept 2012. Took me a year to where I felt strenght coming back.
Age has a lot to do with recovery, I think. I'm currently on 10mg of rev, a maintenance level and doing well. I will tell you that I will not have a second transplant because a year's recovery is too high a price at my age.
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stephengreene
16 posts
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