I am a little anxious right now. I just got off the phone with UT Southwest Medical Center in Dallas to start the process of getting a second opinion now that it's time to start maintenance.
I was diagnosed with multiple myeloma in April 2015 after a blood test showed elevated creatinine levels. I went into kidney failure days later and got started on dialysis 3 times a week. I was told my light chains (lambda) were 15000. The hematologist/oncologist I met in the local Baylor hospital started me on CyBorD (Cytoxan, Velcade, dexamethasone) regimen. Eight weeks later I was in remission and my kidneys were working well enough for me to discontinue dialysis. About 10 weeks after diagnosis my light chains were at 20 or less. Not 20,000. 20!
I was referred to a transplant specialist at Baylor in Dallas and had the autologous stem cell transplant (ASCT) August 25, 2015. It went well and I have been seeing the transplant doc or his PA for follow ups regularly since then. During our visit last week we talked about long term maintenance therapy and decided on Velcade twice a month. He said my recent blood work, PET scan, and bone marrow biopsy were all normal and showed no signs of cancer. He said I am in complete remission.
Now the difficult part. I have received such good care so far I am feeling guilty and disloyal for even considering a second opinion about the maintenance therapy. On the other hand, I see the beginning of maintenance as an important milestone and want to get it right since my quality of life and longevity are at stake.
The doc I am attempting to get the consult from is a myeloma specialist in Dallas whom I learned about on this forum.
What if he recommends a different course of action from my transplant doc?
Forums
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Gary D - Name: Gary D
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 67
Re: Second opinion - what will I do with it?
Only my anecdotal evidence and that I'm still kicking here after 12 years and 2 bone marrow transplants, both of which had maintenance afterwards until my counts started rising while on that med. Transplants were in 2004 and 2009 and were effective for about 4 and half years each.
Allen
Allen
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allenbonslett - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 12/2003
- Age at diagnosis: 43
Re: Second opinion - what will I do with it?
Whether to do maintenance therapy, or not, is almost as big a decisions as to whether to do the transplant after induction. I had a transplant in Jan 2010 and was faced with that decision after 100 days. I was hesitant to do it because one of my reasons for doing the transplant was that I might be able to be drug free for a time after the transplant. Also, maintenance therapy was just beginning to be recommended to most transplant patients due to the results of a study that was published in 2009 where the trial was discontinued early because the maintenance arm of the study had so much better PFS results than the non-maintenance arm of the study.
I still wasn't convinced, but finally decided to give it a try even though I felt that at 100 days my body wasn't ready to receive more drugs. Well, 5 days later I had some side effects from the Revlimid that sent me to the ER and a discontinuation of the drug. My oncologist said at the time that it was ok to not be on maintenance and by the time I would relapse there would be plenty more treatments available. I relapsed almost 3 years post transplant and restarted therapy with Revlimid with no problems and with good results. My feeling is that by that time my body could handle the drugs again.
I enjoyed the almost 3 years drug free. Is this the kind of result that everyone will have? Who knows? Would it have been longer before I relapsed if I had done maintenance? Who knows? But, I was comfortable with the decision. You may get a different opinion from your 2nd opinion specialist. Then, the ball is in your court again. As with deciding whether to do a transplant, you need to decide whether it is worth the risk not to do maintenance, or not. When you make that decision own it and don't look back second guessing yourself.
All the best to you,
Nancy in Phila
I still wasn't convinced, but finally decided to give it a try even though I felt that at 100 days my body wasn't ready to receive more drugs. Well, 5 days later I had some side effects from the Revlimid that sent me to the ER and a discontinuation of the drug. My oncologist said at the time that it was ok to not be on maintenance and by the time I would relapse there would be plenty more treatments available. I relapsed almost 3 years post transplant and restarted therapy with Revlimid with no problems and with good results. My feeling is that by that time my body could handle the drugs again.
I enjoyed the almost 3 years drug free. Is this the kind of result that everyone will have? Who knows? Would it have been longer before I relapsed if I had done maintenance? Who knows? But, I was comfortable with the decision. You may get a different opinion from your 2nd opinion specialist. Then, the ball is in your court again. As with deciding whether to do a transplant, you need to decide whether it is worth the risk not to do maintenance, or not. When you make that decision own it and don't look back second guessing yourself.
All the best to you,
Nancy in Phila
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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: Second opinion - what will I do with it?
Thanks for the comments.
My second opinion appointment is scheduled for December 31, so I will see what Dr. Anderson says then.
Some of the research coming out of the ASH meeting this week seem to indicate that patients generally do much better on maintenance therapy, but there are so many drugs / drug combos I want to try to make sure I get the one that will help me the most.
My second opinion appointment is scheduled for December 31, so I will see what Dr. Anderson says then.
Some of the research coming out of the ASH meeting this week seem to indicate that patients generally do much better on maintenance therapy, but there are so many drugs / drug combos I want to try to make sure I get the one that will help me the most.
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Gary D - Name: Gary D
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 67
Re: Second opinion - what will I do with it?
Hello, Gary:
I thought I would chime in with my non-medical opinion. I would get into the reason why your doctor selected Velcade. For the general population, Rev is much more widely studied. There was a study in this year's European meeting entitled Bortezomib vs Observation, that showed that Velcade maintenance was also better than no maintenance. The two drugs have not yet been studied head to head for maintenance, however.
It has been established that getting more Velcade at all stages is good for patients with the t (4,14) cytogenetic abnormality. And for del 17, it has been more recently shown that an RVD maintenance approach is superior than Rev or Velcade only.
As you yourself said, understanding that there is well grounded thought process behind the approach is key. I would disagree with you in the thought that there is something wrong with getting a second opinion, now that you are in a position to do so. You should look at it as more input, and an educational endeavor. Getting the second opinion does not mean that you would necessarily need or want to change doctors. Good luck
I thought I would chime in with my non-medical opinion. I would get into the reason why your doctor selected Velcade. For the general population, Rev is much more widely studied. There was a study in this year's European meeting entitled Bortezomib vs Observation, that showed that Velcade maintenance was also better than no maintenance. The two drugs have not yet been studied head to head for maintenance, however.
It has been established that getting more Velcade at all stages is good for patients with the t (4,14) cytogenetic abnormality. And for del 17, it has been more recently shown that an RVD maintenance approach is superior than Rev or Velcade only.
As you yourself said, understanding that there is well grounded thought process behind the approach is key. I would disagree with you in the thought that there is something wrong with getting a second opinion, now that you are in a position to do so. You should look at it as more input, and an educational endeavor. Getting the second opinion does not mean that you would necessarily need or want to change doctors. Good luck
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JPC - Name: JPC
Re: Second opinion - what will I do with it?
My specialist generally believes that if one is using an IMiD (such as Revlimid) for induction without progression, then one should continue to use that IMiD in maintenance (with reduced dosages & schedules, while jettisoning the chemo agents).
Likewise, if you are using a PI (such as Velcade) for induction without progression, then continue to use that PI in maintenance. But I'm not a clear how he would choose a maintenance approach if one started on a PI + IMiD for induction.
But, this is just my specialist's general philosophy and your specialist may have a different philosophy wrt maintenance.
Likewise, if you are using a PI (such as Velcade) for induction without progression, then continue to use that PI in maintenance. But I'm not a clear how he would choose a maintenance approach if one started on a PI + IMiD for induction.
But, this is just my specialist's general philosophy and your specialist may have a different philosophy wrt maintenance.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Second opinion - what will I do with it?
So to do maintenance or not to do maintenance is one question. Maintenance with what is another question. I will tell you my husband is dealing with neuropathy which can be a side effect of Velcade. He had RVD for induction. So more often than your prescribed maintenance.
Ask questions about neuropathy and Velcade. I'm not saying we would not do Velcade. I just want you to have your list of considerations/questions ready.
Ask questions about neuropathy and Velcade. I'm not saying we would not do Velcade. I just want you to have your list of considerations/questions ready.
Re: Second opinion - what will I do with it?
I feel good tonight. I had my second opinion consult today with Dr. Larry Anderson, myeloma specialist with University of Texas Southwest Medical Center in Dallas. He had done a thorough review of all my records and concurred completely with the maintenance plan recommended by my transplant doctor. So now I'm ready to start the Velcade every two weeks as long as it works and I tolerate it well.
Also, last week when I told my local treating hematologist / oncologist I was getting a second opinion from Dr. Anderson, she reacted in a positive way and said she works closely with him with many of her patients.
All is well and I feel my prognosis is good enough I stopped on the way home from the doctor today and bought me a new car and financed it for 50 months!
Gary D
Also, last week when I told my local treating hematologist / oncologist I was getting a second opinion from Dr. Anderson, she reacted in a positive way and said she works closely with him with many of her patients.
All is well and I feel my prognosis is good enough I stopped on the way home from the doctor today and bought me a new car and financed it for 50 months!
Gary D
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Gary D - Name: Gary D
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 67
Re: Second opinion - what will I do with it?
Gary D
I absolutely love the fact you bought a car through financing. I probably wont find it so funny when I do the same thing.
I absolutely love the fact you bought a car through financing. I probably wont find it so funny when I do the same thing.
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blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
Re: Second opinion - what will I do with it?
I figured that financing a car is no big deal since the heirs can finish paying for it if they really want it when I am gone. I did develop a different attitude toward magazine subscriptions and green bananas for a while.
How many have gone out and bought some of that high priced, "no questions asked" life insurance and then hoped they can get past the 2 year limitation on the payout?
Charlie (grouchy German)
How many have gone out and bought some of that high priced, "no questions asked" life insurance and then hoped they can get past the 2 year limitation on the payout?
Charlie (grouchy German)
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Grizlump - Name: Charlie
- Who do you know with myeloma?: me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 67
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