Hi Ron,
OIC ... you were on VD weekly initially!!
I think I was confused because CD is twice a week for 3 weeks then 1 week off. I also take 25 mg Revlimid for 21 days. Basically every 21 days I have a drug free week.
My steroid dose was significantly reduced to the dose you requested. I still achieved a CR.
You may want to ask your doc to give 4 mg dex a trial for a 6 months and monitor your labs if they remain stable. You will have reduced your AE's from them. After all, that is how they came up with lo-dose dex (20 mg vs 40 mg) – patients not being able to tolerate the 40 mg were given a reduced dose. In addition to 'mania' and crashing, loss of muscle and becoming diabetic are also side effects of long term steroid use.
In the meantime, enjoy the wind at your back as you blissfully cycle with passion!!
Forums
Re: Biking with multiple myeloma
Suzierose,
Congrats on the CR!!!
In the trial you are on, are they checking if the patients recieved an Immunophenotypic (IR) or Molecular response (MR)? Since the Carfilzomib/Revlimid/Dex combo is apparently getting a good percentage of CR's, I am wondering if they are indeed "deep" responses, which only IR and MR can show. I also think measuring for MR or IR is important since they can show if a relapse is coming and patients can start treating earlier to avoid the damage caused by the Myeloma.
"our long-term results indicate that: 1) the achievement of SMR following VTD consolidation in multiple myeloma patients is associated with a better outcome in terms of PFS and OS; 2) a dynamic increase in molecular tumor burden (AD), detectable by RQ-PCR, predicts late disease relapses several months before clinical recurrence. Taken together these results suggest the importance of developing tailored treatment for patients with high residual burden or showing increasing levels of MRD during follow-up, as already pursued for example in mantle cell lymphoma."
http://ash.confex.com/ash/2011/webprogram/Paper36584.html
Mark
Congrats on the CR!!!
In the trial you are on, are they checking if the patients recieved an Immunophenotypic (IR) or Molecular response (MR)? Since the Carfilzomib/Revlimid/Dex combo is apparently getting a good percentage of CR's, I am wondering if they are indeed "deep" responses, which only IR and MR can show. I also think measuring for MR or IR is important since they can show if a relapse is coming and patients can start treating earlier to avoid the damage caused by the Myeloma.
"our long-term results indicate that: 1) the achievement of SMR following VTD consolidation in multiple myeloma patients is associated with a better outcome in terms of PFS and OS; 2) a dynamic increase in molecular tumor burden (AD), detectable by RQ-PCR, predicts late disease relapses several months before clinical recurrence. Taken together these results suggest the importance of developing tailored treatment for patients with high residual burden or showing increasing levels of MRD during follow-up, as already pursued for example in mantle cell lymphoma."
http://ash.confex.com/ash/2011/webprogram/Paper36584.html
Mark
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Mark
Re: Biking with multiple myeloma
This is an inspirational video. A one legged cyclist who adapted to loosing his leg to cancer.
http://www.cnn.com/video/?hpt=hp_c3#/video/us/2012/04/23/dnt-one-legged-cyclist.knxv
Ron
http://www.cnn.com/video/?hpt=hp_c3#/video/us/2012/04/23/dnt-one-legged-cyclist.knxv
Ron
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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: Biking with multiple myeloma
Hi Ron...that is a nice video, and might inspire some who have lost a leg...note the support van nearby! It reminds me of Terry Fox, a Canadian hero. Terry Fox lost a leg to cancer in 1977...he was just a young man in his twenties. He was so moved by the plight of other cancer victims that he decided to run across the country, and raise money for cancer research. He started in St. John's Nfld, in 1980...he could only go as far as Thunder Bay, Ontario, before the cancer overtook him. He died soon after, but a run in his honour is held every September, and his foundation has raised millions of dollars for cancer research. There is a statue of him at the end of the Trans Canada Highway, in Victoria, BC.
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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: Biking with multiple myeloma
Hi Mark,
Thanks Mark...my wish is for DOR...
You write:
"In the trial you are on, are they checking if the patients recieved an Immunophenotypic (IR) or Molecular response (MR)? Since the carfilzomib/Revlimid/Dex combo is apparently getting a good percentage of CR's, I am wondering if they are indeed "deep" responses, which only IR and MR can show. I also think measuring for MR or IR is important since they can show if a relapse is coming and patients can start treating earlier to avoid the damage caused by the Myeloma."
These are all the questions I have. I have not been to clinic since the report of CR, but I had to have another BM which was exceptionally painful. I go to clinic again on the 3rd and at that time I will be asking all of the above questions. Because the doctor has mentioned molecular response with regard to other trials I am pretty confident immunophenotypic and/or immunofixation is part of the protocol especially since that BM was required and the pain was so bad because they took multiple aspirates. Which is the part of BM that hurts like hell.
Thanks Mark...my wish is for DOR...
You write:
"In the trial you are on, are they checking if the patients recieved an Immunophenotypic (IR) or Molecular response (MR)? Since the carfilzomib/Revlimid/Dex combo is apparently getting a good percentage of CR's, I am wondering if they are indeed "deep" responses, which only IR and MR can show. I also think measuring for MR or IR is important since they can show if a relapse is coming and patients can start treating earlier to avoid the damage caused by the Myeloma."
These are all the questions I have. I have not been to clinic since the report of CR, but I had to have another BM which was exceptionally painful. I go to clinic again on the 3rd and at that time I will be asking all of the above questions. Because the doctor has mentioned molecular response with regard to other trials I am pretty confident immunophenotypic and/or immunofixation is part of the protocol especially since that BM was required and the pain was so bad because they took multiple aspirates. Which is the part of BM that hurts like hell.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Biking with multiple myeloma
Dear Mark and Suzierose,
I've never heard that there could be anything better than a CR. My doctor emailed me last week that, based on the Immunofixation tests that she did on my most recent blood work, I am now in CR (for the first time in two and a half years--a miracle, indeed!). Are you saying that this test is used to determine the depth of the remission? I've never heard my doctor use the acronym DOR... is that "deep overall response"? Thanks for the education--I'm learning more than I ever wanted to about this disease! Blessings, Dana
I've never heard that there could be anything better than a CR. My doctor emailed me last week that, based on the Immunofixation tests that she did on my most recent blood work, I am now in CR (for the first time in two and a half years--a miracle, indeed!). Are you saying that this test is used to determine the depth of the remission? I've never heard my doctor use the acronym DOR... is that "deep overall response"? Thanks for the education--I'm learning more than I ever wanted to about this disease!
Blessings, Dana-
Dana - Name: Dana
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Biking with Multiple Myeloma
I have heard of the term "Stringent Complete Response". Supposedly that is CR plus light chain readings and ratio all in the normal range.
Ron
Ron
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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: Biking with Multiple Myeloma
sCR is CR, plus normal Free Light Chain ratio, plus no evidence of monoclonal protein in the bone marrow. That's why we usually have the pleasure of a BMB after reaching CR, in order to see whether we've also reached sCR. When I reached CR with my CRD treatment, the BMB revealed I was at sCR.
While this seems to indicate a deeper response than CR ,it is not indicative of IR or MR. In fact, after reading Mark's post, I did some research and found some information that indicates sCR does not necessarily equate to better PFS or OS with respect to CR, while IR or MR does.
I'm glad Mark raised the question since I had not been aware of the IR or MR tests. As with suzierose, I plan on bringing this up with my doctor at my next appointment.
suzierose, to answer an earlier question - my new 29er is a Felt Nine Sport.
http://www.feltbicycles.com/USA/2012/Mountain/Nine-Series/Nine-Sport.aspx
Not quite as nice as my road bike was, but much nicer than the 26" mountain bike I had.
While this seems to indicate a deeper response than CR ,it is not indicative of IR or MR. In fact, after reading Mark's post, I did some research and found some information that indicates sCR does not necessarily equate to better PFS or OS with respect to CR, while IR or MR does.
I'm glad Mark raised the question since I had not been aware of the IR or MR tests. As with suzierose, I plan on bringing this up with my doctor at my next appointment.
suzierose, to answer an earlier question - my new 29er is a Felt Nine Sport.
http://www.feltbicycles.com/USA/2012/Mountain/Nine-Series/Nine-Sport.aspx
Not quite as nice as my road bike was, but much nicer than the 26" mountain bike I had.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: Biking with multiple myeloma
Dana,
That is GREAT you got to CR!!! I am so happy for you. The last time we were posting you mentioned you had VGPR after your Allo. Did the Donor Immune System get you to the CR without using any drugs? That must have been exciting after all those drugs not being able to get it for you. I really hope yours holds a long time - you deserve it. I am still having no problems with GVHD. Next month will be 1 year for me since the Allo. I will be getting all my tests done again next month.
As Suzierose mentioned, unfortunatey determing if a patient got a Molecular (MR) or Immunophenotypic (IR) response requires a bone marrow biopsy (BMB). They are 2 different methods that are a much more sensitive test of tumor burden from the spot where the BMB is done than CR or stringent CR show. CR relys on if the Myeloma cells are secreting M Protein. I will copy and paste a chart that shows something that may surprise a lot of patients. A patient with VGPR could have LESS of a tumor burden than someone with a CR with negative immunofixation.
Complete Response: are all the same?
Response Criteria: Tumor gene copy number
Diagnosis: 25,000 - 500,000
PR: 5,000 – 100,000
VGPR: 1,500 – 20,000
Immunofixation-negative CR: 1,000 – 10,000
Immunophenotypic CR*: 10 – 100
Molecular CR^: 5 – 20
*Paiva et al Blood 2009;114;4369-72;
^Ladetto et al. J Clin Oncol 2010;28:2077-84
http://myeloma.org/pdfs/Best-of-ASH-2011_01-25-12.pdf
MR is not a standardized test. It needs to be set up for each patient. Other blood cancers have standardized tests that can determine this. It is time consuming and expensive to run. The IR is a standardized test, so that can be run on all patients. MR and IR tests are really complimentary tests to the ones we currently run. Despite the fact that they are so much more sensitive, one study that was checking patients for IR had some patients that had IR but did not have Immunofixation-negative CR and vice versa. Here is what the study showed:
“Forty-three percent of patients achieved CR, 30% achieved stringent CR, and 30% achieved IR. Patients in stringent CR showed no significant survival advantage compared with those in CR, whereas patients in IR showed significantly increased progression-free survival (PFS) and time to progression (TTP) compared with those in stringent CR or CR; this was confirmed by multivariate analysis (hazard ratio, 4.1; P = .01 for PFS). Discrepancies between the three techniques were relatively common. Notably, in all seven patients achieving IR but remaining immunofixation positive, the M-component disappeared in follow-up analysis. In contrast, MFC-positive patients who were immunofixation negative (n = 20) showed a tendency toward early reappearance of the M-component (median, 3 months). Similarly, in five of 11 stringent CR but MFC-positive patients, symptomatic disease progression was recorded at a median of 13 months after induction.”
'Achieving an IR translates into superior PFS and TTP compared with conventional CR or stringent CR. These techniques provide complementary information and thus, an effort should be made to refine response criteria in multiple myeloma."
http://jco.ascopubs.org/content/29/12/1627.long
While it is a pain “in the you know where” to get these BMB’s, the upside for me is if the Donor Immune System can hold the more sensitive measures of response, I do not use any maintenance, so I avoid all the side effects of the drugs.
Mark
That is GREAT you got to CR!!! I am so happy for you. The last time we were posting you mentioned you had VGPR after your Allo. Did the Donor Immune System get you to the CR without using any drugs? That must have been exciting after all those drugs not being able to get it for you. I really hope yours holds a long time - you deserve it. I am still having no problems with GVHD. Next month will be 1 year for me since the Allo. I will be getting all my tests done again next month.
As Suzierose mentioned, unfortunatey determing if a patient got a Molecular (MR) or Immunophenotypic (IR) response requires a bone marrow biopsy (BMB). They are 2 different methods that are a much more sensitive test of tumor burden from the spot where the BMB is done than CR or stringent CR show. CR relys on if the Myeloma cells are secreting M Protein. I will copy and paste a chart that shows something that may surprise a lot of patients. A patient with VGPR could have LESS of a tumor burden than someone with a CR with negative immunofixation.
Complete Response: are all the same?
Response Criteria: Tumor gene copy number
Diagnosis: 25,000 - 500,000
PR: 5,000 – 100,000
VGPR: 1,500 – 20,000
Immunofixation-negative CR: 1,000 – 10,000
Immunophenotypic CR*: 10 – 100
Molecular CR^: 5 – 20
*Paiva et al Blood 2009;114;4369-72;
^Ladetto et al. J Clin Oncol 2010;28:2077-84
http://myeloma.org/pdfs/Best-of-ASH-2011_01-25-12.pdf
MR is not a standardized test. It needs to be set up for each patient. Other blood cancers have standardized tests that can determine this. It is time consuming and expensive to run. The IR is a standardized test, so that can be run on all patients. MR and IR tests are really complimentary tests to the ones we currently run. Despite the fact that they are so much more sensitive, one study that was checking patients for IR had some patients that had IR but did not have Immunofixation-negative CR and vice versa. Here is what the study showed:
“Forty-three percent of patients achieved CR, 30% achieved stringent CR, and 30% achieved IR. Patients in stringent CR showed no significant survival advantage compared with those in CR, whereas patients in IR showed significantly increased progression-free survival (PFS) and time to progression (TTP) compared with those in stringent CR or CR; this was confirmed by multivariate analysis (hazard ratio, 4.1; P = .01 for PFS). Discrepancies between the three techniques were relatively common. Notably, in all seven patients achieving IR but remaining immunofixation positive, the M-component disappeared in follow-up analysis. In contrast, MFC-positive patients who were immunofixation negative (n = 20) showed a tendency toward early reappearance of the M-component (median, 3 months). Similarly, in five of 11 stringent CR but MFC-positive patients, symptomatic disease progression was recorded at a median of 13 months after induction.”
'Achieving an IR translates into superior PFS and TTP compared with conventional CR or stringent CR. These techniques provide complementary information and thus, an effort should be made to refine response criteria in multiple myeloma."
http://jco.ascopubs.org/content/29/12/1627.long
While it is a pain “in the you know where” to get these BMB’s, the upside for me is if the Donor Immune System can hold the more sensitive measures of response, I do not use any maintenance, so I avoid all the side effects of the drugs.
Mark
-
Mark
Re: Biking with multiple myeloma
Hi Dana!
DOR is duration/depth of response...it is a term used typically in clinical trials vs. PFS as they are not equivalent.
DOR is duration/depth of response...it is a term used typically in clinical trials vs. PFS as they are not equivalent.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011