Dear all
Some of you might know that my dad has high risk multiple myeloma, stage 3. He had 4 cycles of Velcade and a sct. He had dropped M-band from 14g/L to 8g/L. His kappa/ lambda ratio is still abnormal. Doctor wants him to start Velcade again.
Is there hope for this group of patients? Pls share your story. Thanks much.
Bless you,
Phoebe
Forums
Re: High risk multiple myeloma, pls share your story
Dear Phoebe,
There is hope as I see it!
I was diagnosed with multiple myeloma in august 2010 at the age of 48 with atypical presentation (fevers, nausea etc) and started treatment one month later with CTD (cyclophosphamide, thalidomide, dex). It had no effect and I was very ill and stayed in the hospital on and off for a month. Doctors switched to VCD, three cycles before an auto transplant, and my urine lambda light chains dropped from 18000 mg/24h to 460 in just one cycle.
After my transplant in december 2010 my light chains hovered around 30 mg (VGPR). I had an M-spike when diagnosed but it decreased gradually and disappeared in a couple of months after the transplant.
Six months after my auto transplant (june 2011) I started maintenance treatment with iv Velcade once a week initially and then twice a month. It did lower my urine lambda light chain numbers to below the detection limit. Due to PN I switched to subcutaneous administration. After a year (June 2012) my numbers started to rise and I recieved three cycles of Revlimid, cyclophosphamide and dex, before going through an allogeneic transplant in September. Right before the transplant my lamda light chains could not be detected in the urine but I was immunofixation positive and had an abnormal serum kappa/lambda ratio (0,16). My ratio is 0,21 six months after my allo and after administration of DLI (donor lymphocyte infusion) so it's heading in the right direction.
I am high risk due to the presence of del17p and also according to GEP80 (gene expression profiling). My beta2microglobulin was also >3,5 but < 5,5 at diagnosis.
So in my case Velcade worked very well for quite some time. And there are so many other treatments and combinations to try so cheer up!
Best wishes from Åsa In Sweden
There is hope as I see it!
I was diagnosed with multiple myeloma in august 2010 at the age of 48 with atypical presentation (fevers, nausea etc) and started treatment one month later with CTD (cyclophosphamide, thalidomide, dex). It had no effect and I was very ill and stayed in the hospital on and off for a month. Doctors switched to VCD, three cycles before an auto transplant, and my urine lambda light chains dropped from 18000 mg/24h to 460 in just one cycle.
After my transplant in december 2010 my light chains hovered around 30 mg (VGPR). I had an M-spike when diagnosed but it decreased gradually and disappeared in a couple of months after the transplant.
Six months after my auto transplant (june 2011) I started maintenance treatment with iv Velcade once a week initially and then twice a month. It did lower my urine lambda light chain numbers to below the detection limit. Due to PN I switched to subcutaneous administration. After a year (June 2012) my numbers started to rise and I recieved three cycles of Revlimid, cyclophosphamide and dex, before going through an allogeneic transplant in September. Right before the transplant my lamda light chains could not be detected in the urine but I was immunofixation positive and had an abnormal serum kappa/lambda ratio (0,16). My ratio is 0,21 six months after my allo and after administration of DLI (donor lymphocyte infusion) so it's heading in the right direction.
I am high risk due to the presence of del17p and also according to GEP80 (gene expression profiling). My beta2microglobulin was also >3,5 but < 5,5 at diagnosis.
So in my case Velcade worked very well for quite some time. And there are so many other treatments and combinations to try so cheer up!
Best wishes from Åsa In Sweden
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asaryden - Name: asaryden
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: August 2010
- Age at diagnosis: 48
Re: High risk multiple myeloma, pls share your story
Hi Phoebe,
There is hope. One of my myeloma specialists told me there was always hope otherwise we wouldn't try (he was referring to finding a cure for this awful disease). I dont specifically know what mutations/deletions I have but my myeloma was chemorefractory. I asked the same specialist (he sees a lot of patients) whether he had had other patients in my situation and his reply was one (that patient was currently in a clinical trial for a new drug - I wouldn't qualify coz I had had renal failure). He also grouped his patients roughly into the good egg group (they responded to treatment) and the bad egg group (those that didn't respond to treatment). I was clearly in the bad egg group.
My treatment started in April 2009 with VAD (an older treatment regimen) Vincristine, Adriomycin and Dexamethasone. Paraprotein levels went from 67 g/L to 29 g/L after 4 cycles. Thalidomide and dex for 9 months came next they dropped the levels from 29 to 20. After one month off the drugs the level had gone back up to 24. Then I had my stem cell transplant (June 2010) using melphalan and my levels dropped to 20. By late November it was back to 29 g/L. I then had 3 cycles of Velcade and my levels dropped to 16 a 4th cycle did nothing. At this stage my prognosis was not looking good.
Thank goodness for the wonderful person who donated their stem cells so that I could have a mini allograft using reduced intensity chemotherapy (April 2011). I am now in remission and my paraprotein hasn't been detected for nearly a year now.
All the best for you and your dad,
Libby
There is hope. One of my myeloma specialists told me there was always hope otherwise we wouldn't try (he was referring to finding a cure for this awful disease). I dont specifically know what mutations/deletions I have but my myeloma was chemorefractory. I asked the same specialist (he sees a lot of patients) whether he had had other patients in my situation and his reply was one (that patient was currently in a clinical trial for a new drug - I wouldn't qualify coz I had had renal failure). He also grouped his patients roughly into the good egg group (they responded to treatment) and the bad egg group (those that didn't respond to treatment). I was clearly in the bad egg group.
My treatment started in April 2009 with VAD (an older treatment regimen) Vincristine, Adriomycin and Dexamethasone. Paraprotein levels went from 67 g/L to 29 g/L after 4 cycles. Thalidomide and dex for 9 months came next they dropped the levels from 29 to 20. After one month off the drugs the level had gone back up to 24. Then I had my stem cell transplant (June 2010) using melphalan and my levels dropped to 20. By late November it was back to 29 g/L. I then had 3 cycles of Velcade and my levels dropped to 16 a 4th cycle did nothing. At this stage my prognosis was not looking good.
Thank goodness for the wonderful person who donated their stem cells so that I could have a mini allograft using reduced intensity chemotherapy (April 2011). I am now in remission and my paraprotein hasn't been detected for nearly a year now.
All the best for you and your dad,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: High risk multiple myeloma, pls share your story
I'm 'high risk' because of the p17 deletion and a high albumin count...but I'm also really new at this; today was my second chemotherapy day. I'm really lucky: my primary care doc sent me to the hemotologist to 'rule out' all the 'zebras' (you know the old medical saw; when you hear hoofbeats, think horses, not zebras?)
Turns out I was riding a big zebra. My only "real" symptom was a mild anemia, but the bone marrow biopsy showed me as 75% plasma cells, and so here I am. Personally, I have plenty of hope here. I don't know if I'll ever be eligible for a 'mini allo" transplant....I'm 63...but I'm pushing for a good, long, life with plenty of time to finish my books and teach a bunch of kids. That'll do.
Turns out I was riding a big zebra. My only "real" symptom was a mild anemia, but the bone marrow biopsy showed me as 75% plasma cells, and so here I am. Personally, I have plenty of hope here. I don't know if I'll ever be eligible for a 'mini allo" transplant....I'm 63...but I'm pushing for a good, long, life with plenty of time to finish my books and teach a bunch of kids. That'll do.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: High risk multiple myeloma, pls share your story
Hi Dianaiad, good luck with your treatment. What type of protocol are you on? Also, you mention that you have high albumin as a negative thing. Did you mean low albumin? Having albumin above 3.5 is a positive prognosticator. Having albumin in the high normal range...upper 4's to low 5's (depending on lab range) is a great thing to have.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: High risk multiple myeloma, pls share your story
Sorry...I meant beta c-microglobulin, not albumen. The 'beta c' was 4.0. My apologies...yesterday was my second day of chemo, and I have learned that I should...probably...not send e-mail or make big decisions on the days I take a very large dose of dexamethasone.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: High risk multiple myeloma, pls share your story
Hi Dianaiad, yeah, dex can be a pain but, apart from some horror stories, I think the majority of us don't devolve into the Jekyll and Hyde scenario. I was able to tolerate it well and didn't have any major meltdowns and I have young kids and work in a public courthouse! Xanax helped smooth things out, especially at night to allow a decent night's sleep. Good luck.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: High risk multiple myeloma, pls share your story
terryl1 wrote:
> Hi Dianaiad, yeah, dex can be a pain but, apart from some horror stories, I
> think the majority of us don't devolve into the Jekyll and Hyde scenario. I
> was able to tolerate it well and didn't have any major meltdowns and I have
> young kids and work in a public courthouse! Xanax helped smooth things out,
> especially at night to allow a decent night's sleep. Good luck.
Oh, I don't do "Jekyll and Hyde." More like Jekyll and a cross between Pollyanna and Anne Shirley.
At least, that's what my family tells me!
> Hi Dianaiad, yeah, dex can be a pain but, apart from some horror stories, I
> think the majority of us don't devolve into the Jekyll and Hyde scenario. I
> was able to tolerate it well and didn't have any major meltdowns and I have
> young kids and work in a public courthouse! Xanax helped smooth things out,
> especially at night to allow a decent night's sleep. Good luck.
Oh, I don't do "Jekyll and Hyde." More like Jekyll and a cross between Pollyanna and Anne Shirley.
At least, that's what my family tells me!
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: High risk multiple myeloma, pls share your story
Absolutely there's hope. It's not an easy journey but it's more than worth it later on. I started VRD in January of 2011 and completed it at the end of July. Had a nasty bacterial infection that put me into septic shock and in the ICU for four days but since then I have had to do only a 3 week on, 1 week off Revlimid regimen. Loving life, traveling more, just got back from Reno. Keep the faith!
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John Fabian
Re: High risk multiple myeloma, pls share your story
Thanks for all the posts, sharing your story or views.
Can anyone let me know what is a mini allo? Why is it mini? Sounds like a mini cure!
Can anyone let me know what is a mini allo? Why is it mini? Sounds like a mini cure!
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Phoebe - Who do you know with myeloma?: dad
- Age at diagnosis: 62
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