Hello everybody,
I'm new here and thought I'd introduce myself at this time.
I'm a young and reasonably fit 61 and was first diagnosed in March of last year, although I was ill for months earlier. In November I I took my last medication and was declared to be in remission. I've taken a monthly Zometa injection since. I had my stem cells harvested before remission but haven't had the pleasure yet.
It's been 7 months since Velcade shots, dexamethasone, and cyclophosphamide and I just learned that it's come back with a vengeance.
My U Kappa Free Excretion (60 in Jan, 64 in March) is now 318.
The U Kappa/Lambda Free Ratio (34 in Jan, 52 in March) is now 202.
I know these numbers are alarming. My doctor tends to downplay things and reassured me that there are 3 new drugs that we could try. He also feels very strongly about a stem cell transplant, which is something I really don't want to have to do.
The doctor says to wait 6 weeks and do the labs again before ordering more tests and procedures and then going on medication.
I'm thinking we should get on with it immediately. My only possible symptom at this time is weakness.
Should I push my doctor to be more aggressive?
Much of the information online is old and extremely alarming. I'd really like to know what the present life expectancy of someone in my condition (with and without the transplant) is and how quickly we should proceed.
Think positively and positive things will come your way. I hope to learn and share on this forum and wish all of you wellness.
Forums
6 posts
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Danleb - Name: Danleb Daniel Lebenstein
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2015
- Age at diagnosis: 59
Re: Should I start treatment again right now?
Dan,
I agree 6 weeks of wait and watch is extreme. More importantly, what are your chromosomal abnormalities?
I agree 6 weeks of wait and watch is extreme. More importantly, what are your chromosomal abnormalities?
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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: Should I start treatment again right now?
Are you seeing a multiple myeloma specialist or just a general oncologist? You may want a second opinion if it is just a general oncologist.
The fact that you had such good results with the initial induction therapy, but did not have maintenance, makes me wonder why. There is nothing that indicates that you are refractory to any of the drugs you originally took.
It could be simply restarting therapy with the same drugs and then follow that up with a maintenance protocol. Your initial therapy did not include an immunomodulatory drug (IMiD) such as Revlimid or Pomalyst. Those along with dex are commonly prescribed for maintenance. They also seem to enhance the effect of proteasome inhibitors such as Velcade.
The fact that you had such good results with the initial induction therapy, but did not have maintenance, makes me wonder why. There is nothing that indicates that you are refractory to any of the drugs you originally took.
It could be simply restarting therapy with the same drugs and then follow that up with a maintenance protocol. Your initial therapy did not include an immunomodulatory drug (IMiD) such as Revlimid or Pomalyst. Those along with dex are commonly prescribed for maintenance. They also seem to enhance the effect of proteasome inhibitors such as Velcade.
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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: Should I start treatment again right now?
Hi Dan.
I'd agree with the general thread above. I'm not sure about waiting, especially on testing, particularly if you have/had higher risk cytogenetics and/or other indicators of worse outcome. Have you had other abnormalities in the CRAB blood work, for instance, or a higher beta 2 microglobulin? I might agree with waiting for a specialist's input. More information is usually better, right?
I also think you need to see a myeloma specialist at a center of excellence. It looks like you are in North Carolina, so you have 3 centers (UNC, Wake Forrest, and Duke) to choose from, per the list on this site. I'll leave it to those with experience to comment on which might be better.
If you are already at one, how about a second opinion? When my husband was diagnosed here in California in November - December, 2015, we had a general hematologist / oncologist, but got opinions from specialists at Stanford and UCSF and elected to change insurance and start care at UCSF. We got different treatment recommendations at each of the three sites. We finish his outpatient autologous stem cell transplant (ASCT) tomorrow. He was on Kyprolis, Revlimid, and dexamethasone (KRD) at boosted doses as he had a bad cytogenetic profile. Still, he went into his transplant MRD negative (a pretty positive thing after many nights of a battle between positive and negative thoughts).
I also don't know, as others have suggested, if you are resistant to any therapy as it doesn't appear you had maintenance, like Revlimid.
When you say you were in remission, did they check your MRD status? Did they say you had a CR, or better an sCR?
I wish you well through this. As for life expectancy, I personally find the curves off putting as they are based on 5 year old data without the full effects of the newer medications. Our myeloma specialist said what we wanted (and needed) to hear, "I plan on being your doctor for a long time and I hope we both live to see a cure".
I'd agree with the general thread above. I'm not sure about waiting, especially on testing, particularly if you have/had higher risk cytogenetics and/or other indicators of worse outcome. Have you had other abnormalities in the CRAB blood work, for instance, or a higher beta 2 microglobulin? I might agree with waiting for a specialist's input. More information is usually better, right?
I also think you need to see a myeloma specialist at a center of excellence. It looks like you are in North Carolina, so you have 3 centers (UNC, Wake Forrest, and Duke) to choose from, per the list on this site. I'll leave it to those with experience to comment on which might be better.
If you are already at one, how about a second opinion? When my husband was diagnosed here in California in November - December, 2015, we had a general hematologist / oncologist, but got opinions from specialists at Stanford and UCSF and elected to change insurance and start care at UCSF. We got different treatment recommendations at each of the three sites. We finish his outpatient autologous stem cell transplant (ASCT) tomorrow. He was on Kyprolis, Revlimid, and dexamethasone (KRD) at boosted doses as he had a bad cytogenetic profile. Still, he went into his transplant MRD negative (a pretty positive thing after many nights of a battle between positive and negative thoughts).
I also don't know, as others have suggested, if you are resistant to any therapy as it doesn't appear you had maintenance, like Revlimid.
When you say you were in remission, did they check your MRD status? Did they say you had a CR, or better an sCR?
I wish you well through this. As for life expectancy, I personally find the curves off putting as they are based on 5 year old data without the full effects of the newer medications. Our myeloma specialist said what we wanted (and needed) to hear, "I plan on being your doctor for a long time and I hope we both live to see a cure".
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rick - Name: rick
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: nov 2015
- Age at diagnosis: 50
Re: Should I start treatment again right now?
I also agree with the thread above.
As with Rick, my wife also was treated at UCSF – small world! In our case, she did 7 cycles total. 1st cycle just dexamethasone, 2 more cycles Revlimid and and dexamethasone, 4 more cycles Velcade, Revlimid, and dex. Also minimal residual disease (MRD) negative prior to autologous stem cell transplant (ASCT) on 3/16/16.
My wife says the induction therapy was worse than the ASCT. She's now at 100 percent strength and feeling great.
The Revlimid / dexamethasone combination really knocked down the multiple myeloma numbers and was well tolerated.
Best of luck!
John
As with Rick, my wife also was treated at UCSF – small world! In our case, she did 7 cycles total. 1st cycle just dexamethasone, 2 more cycles Revlimid and and dexamethasone, 4 more cycles Velcade, Revlimid, and dex. Also minimal residual disease (MRD) negative prior to autologous stem cell transplant (ASCT) on 3/16/16.
My wife says the induction therapy was worse than the ASCT. She's now at 100 percent strength and feeling great.
The Revlimid / dexamethasone combination really knocked down the multiple myeloma numbers and was well tolerated.
Best of luck!
John
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JohnBoy5456 - Name: John
- Who do you know with myeloma?: Janet
- When were you/they diagnosed?: 6/15/15
- Age at diagnosis: 64
6 posts
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