Morank, thanks so much for sharing your story. I will hold onto hope that we have some time. But it is does seem hard to find people with 17p deletion.
Why did the treatment change from VRD after only two months? Did the VRD not work?
My husband was seeing some improvement on VRD, but only for about a month. Then his numbers (and his health) deteriorated rapidly. His m-spike jumped up to 3.4. He skipped the CyBorD regimen and moved to Hyper-CVAD. We are aiming for an auto SCT at OHSU.
How did they determine that Velcade should be the maintenance therapy?
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HHH - Name: HHH
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 60
Re: Husband with 17p deletion
At the time when Jeff was on VRD there was some speculation as to whether Revlimid would detrimentally affect his stem cells and we knew that he would do a transplant, so we elected to change to CyBorD. He did have success on VRD and it turns out that the research was actually incorrect, but we were fine with the switch.
Velcade as maintenance was also decided based on research. If you look up 17p deletion and maintenance therapy, pretty much the one consensus is that Velcade (as long as it's working) has a better effect on progression-free survival than Revlimid. There is an article here on the Beacon that talks about the research but just go to google or yahoo and type in 17p deletion maintenance therapy in multiple myeloma and you'll be able to see for yourself. I am the one who does all of our research and I try to stay current but there are new drugs out there now that I have not done much studying on because the Velcade is still working for him.
Do you know your husband's timeframe for his SCT?
Who does your husband go to for his regular oncology appointments?
OHSU was fantastic. The ward he'll be on is fairly new and the nurses and CNA's up there are top notch. It's the bone marrow transplant ward that was supported by Phil Knight and is named after him. The rooms are huge and if you are lucky to get on the correct side, you can have a view of the river and downtown. The hematology office (where he'll have his pre- and post-stem cell transplant appointments and infusions) is in an older building (Physician's Pavilion) and is kind of small and cramped, but the staff is friendly and we were not there that often.
Velcade as maintenance was also decided based on research. If you look up 17p deletion and maintenance therapy, pretty much the one consensus is that Velcade (as long as it's working) has a better effect on progression-free survival than Revlimid. There is an article here on the Beacon that talks about the research but just go to google or yahoo and type in 17p deletion maintenance therapy in multiple myeloma and you'll be able to see for yourself. I am the one who does all of our research and I try to stay current but there are new drugs out there now that I have not done much studying on because the Velcade is still working for him.
Do you know your husband's timeframe for his SCT?
Who does your husband go to for his regular oncology appointments?
OHSU was fantastic. The ward he'll be on is fairly new and the nurses and CNA's up there are top notch. It's the bone marrow transplant ward that was supported by Phil Knight and is named after him. The rooms are huge and if you are lucky to get on the correct side, you can have a view of the river and downtown. The hematology office (where he'll have his pre- and post-stem cell transplant appointments and infusions) is in an older building (Physician's Pavilion) and is kind of small and cramped, but the staff is friendly and we were not there that often.
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Morank - Name: Kim and Jeff
- Who do you know with myeloma?: Spouse- Jeff
- When were you/they diagnosed?: Dec. 2011
- Age at diagnosis: 47
Re: Husband with 17p deletion
We have met with Dr. Maziarz at OHSU. He would do the stem cell transplant. We don't have a schedule for that yet.
How hard is the SCT process? It sounds just grueling.
Thanks so much for the information on maintenance therapy. This is all still pretty new for us, because the diagnosis was just five months ago. I think you said a specialist from Seattle was also involved in your husband's case. We don't have a second opinion doctor at this point. I feel like we should have a second opinion, but I don't know how to select someone.
How hard is the SCT process? It sounds just grueling.
Thanks so much for the information on maintenance therapy. This is all still pretty new for us, because the diagnosis was just five months ago. I think you said a specialist from Seattle was also involved in your husband's case. We don't have a second opinion doctor at this point. I feel like we should have a second opinion, but I don't know how to select someone.
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HHH - Name: HHH
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 60
Re: Husband with 17p deletion
An autologous SCT may or may not be grueling. Go to the Treatments forum, look at the first posting ("Useful links to existing forum discussions"), and scroll down to the links to forum members (a half dozen or more) who have written up their transplant stories. You will find stories of inpatient and outpatient transplants, those who breezed through and those who confronted considerable problems when their immune systems and the linings of their digestive systems were temporarily blown away.
At Mayo Clinic they do almost 400 blood or marrow transplants a year for various cancers. Many are outpatients who stay in local hotels and rooming houses. About half of those never have to be hospitalized, and many of the others only spend a few days in the hospital dealing with infections or other troubles. It varies greatly, from those who visit the nursing station for an hour a day, to those who are cared for around the clock.
At Mayo Clinic they do almost 400 blood or marrow transplants a year for various cancers. Many are outpatients who stay in local hotels and rooming houses. About half of those never have to be hospitalized, and many of the others only spend a few days in the hospital dealing with infections or other troubles. It varies greatly, from those who visit the nursing station for an hour a day, to those who are cared for around the clock.
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Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
Re: Husband with 17p deletion
My first posting. I have the 17p. Did a SCT in March 2013. It didn't help much. M-spike started going up December 2013, so added Revlimid to Velcade and that has worked. Still on that now with M-spike at 0.05 g/dL and expect CR by January. Wondering if should stop after CR and wait to use it again if / when it comes back, or continue even in CR, but concerned if continuing will cause me to lose that as a weapon for later?
Any advice?
I am 50 and in good health otherwise.
Any advice?
I am 50 and in good health otherwise.
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MarkUnderwood
Re: Husband with 17p deletion
HHH asked: "Did your husband have his stem cell transplant?"
Sorry I didn't respond earlier - I don't come on this site much and luckily cancer is far from my mind as we get busier and busier with the kids sports and school schedules. My husband has never reached CR and he is indefinitely on Velcade until his numbers start to rise, then we'll pursue a different line of treatment. Currently, our doctor is of the belief of "if it ain't broke, don't fix it", and my husband is maintaining quite well with just the every-other-week Velcade.
Sorry I didn't respond earlier - I don't come on this site much and luckily cancer is far from my mind as we get busier and busier with the kids sports and school schedules. My husband has never reached CR and he is indefinitely on Velcade until his numbers start to rise, then we'll pursue a different line of treatment. Currently, our doctor is of the belief of "if it ain't broke, don't fix it", and my husband is maintaining quite well with just the every-other-week Velcade.
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Morank - Name: Kim and Jeff
- Who do you know with myeloma?: Spouse- Jeff
- When were you/they diagnosed?: Dec. 2011
- Age at diagnosis: 47
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