I started with a Velcade/Dex/Revlimid treatment that was effective in reducing my IGG by 22%Unfortunately, I had a severe allergic skin reaction to Revlimid after only 10 days and was forced to stop that treatment. Subsequent treatments with Velcade/Dex, Velcade/Dex/Cytoxan and Velcade/Dex/Cytoxan/Thalidimide did not produce any further decrease in my IGG. Even though the last two treatments were with low dosages, the lack of response indicates that it would not be any better by repeating with higher dosages. I am now looking at an inpatient 4 day infusion of possibly 8 drugs to push me toward remission.
Has anyone had a similar resistance to chemo? If yes, what was the prescribed treatment plan?
Forums
5 posts
• Page 1 of 1
Re: Resistance to Chemotherapy
My husband was/is resistant to chemo. He did the Velcade, Revlimid, Dex for 8 full cycles, (24 weeks), the Velcade was increased to twice weekly about half way through the regimen. At the end of the cycles, his m-spike only decreased 51%. I do not recall right now what his numbers were for his IgG Kappa. His m-spike number has already increased since he finished the chemo in June and it has only been a month since he finished it.
So, he is waiting for insurance approval for an allogenic stem cell transplant. Autologous was not an option once it was clear that he was resistant to the chemo. Hopefully he will be approved this week and in the hospital next week, then it is showtime.
Good luck to you fighting this.
So, he is waiting for insurance approval for an allogenic stem cell transplant. Autologous was not an option once it was clear that he was resistant to the chemo. Hopefully he will be approved this week and in the hospital next week, then it is showtime.
Good luck to you fighting this.
-
Jenn - Name: Jenn
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September 2011
- Age at diagnosis: 45
My life and my diagnoses
The question is how do i feel now after my diagnoses. I am likely not normal, but my answer is "better". Here is why.
For years I have endured poor health issues which I felt were undiagnosed, though doctors seemed to enjoy labeling me with Fibromyalgia. I argued that my symptoms did not necessarily match FMS and that I was suffering from deep bone pain and horrible peripheral neuropathy, high blood pressure, and excessive and extreme migraines, and other complications. I went from doctor to doctor trying to find why I was suffering so much, so much so that I had to leave a very good and enjoyable career 10 years ago. I have gone down hill with each passing year. It seems I saw hundreds of doctors. I even saw doctors from two different medical universities who failed in recent years to diagnose me as well. It was devastating to be labeled and brushed off, when i knew that i was truly sick and declining. I believe they did not find a diagnoses because they relied more on information based on the cascade of lables and incorrect views of previous doctors. I do not mean that they were evil, possibly they were well meaning, but sadly and most certainly, very much off course.
When an infectious disease doctor diagnosed me in January 2012 with an antibody problem, he called me and rather than mention it by name, he just said that there was an elevation in antibodies and that my GP would explain and follow up on it for me. On several occasions after this I requested that my GP explain the extra antibody information to me, however because i had blood pressure, migraine, and bronchial infection problems, he failed to find the time to take the time to explain what i neded to know. Knowing something was very wrong when my GP blew off a painful lump in my dominant arm that was also effecting the use of my handed, I sought a new GP. To my good fortune I finally found the right doctor who chose not to see other medical records and start fresh. In a short time I was also seeing a new Immunologist who made my diagnoses on my second visit. Even though I had been tested 3 other times in the last year for Lupus, it was never found, until now. I am on Pacquinil and feeling tons better in one months time. He also followed the lead of the Immunologist and determined I had MGUS with a rising M-spike from a few months previous. I am going through all the tests and determining what the mass in my arm is( is it myeloma related or not) a biopsy and bone marrow test are scheduled.
I can not lie and say that these are not scary thing, but after so many years of pain and suffering I am so relieved to have an answer. It may not be the answer I had hoped for, but at least now I know who the demon is that i am fighting. I work each day to live and eat as healthy a lifestyle as I can. Today I see life remarkably different because not only do I understand my pain and fatigue, but i find renewed joy and beauty in just about everything. I am learning to embrace every precious moment and the wonderful opportunities around me to do good and bring joy into the lives of those around me. The more I am able to do for others in small ways often random acts of kindness, the better I feel my health is. Like others with Multiple Myeloma, ( though i do not know if i am MGUS, SMM, or multiple myeloma,, i too have changed my diet and see benefits there too. I have always been health conious but now i know who the enemy is.I was not addressing certain needs or consuming a few poor food choices.
To me "knowledge " has been key. While I do not yet know what the road ahead will be, the truth is, it already was my lot before this diagnoses. Now I can do the best I can enlisting the help of my new and good doctors, and embracing the treatments that will hopefully provide me with some quality of life for years to come. I am full of hope.
For years I have endured poor health issues which I felt were undiagnosed, though doctors seemed to enjoy labeling me with Fibromyalgia. I argued that my symptoms did not necessarily match FMS and that I was suffering from deep bone pain and horrible peripheral neuropathy, high blood pressure, and excessive and extreme migraines, and other complications. I went from doctor to doctor trying to find why I was suffering so much, so much so that I had to leave a very good and enjoyable career 10 years ago. I have gone down hill with each passing year. It seems I saw hundreds of doctors. I even saw doctors from two different medical universities who failed in recent years to diagnose me as well. It was devastating to be labeled and brushed off, when i knew that i was truly sick and declining. I believe they did not find a diagnoses because they relied more on information based on the cascade of lables and incorrect views of previous doctors. I do not mean that they were evil, possibly they were well meaning, but sadly and most certainly, very much off course.
When an infectious disease doctor diagnosed me in January 2012 with an antibody problem, he called me and rather than mention it by name, he just said that there was an elevation in antibodies and that my GP would explain and follow up on it for me. On several occasions after this I requested that my GP explain the extra antibody information to me, however because i had blood pressure, migraine, and bronchial infection problems, he failed to find the time to take the time to explain what i neded to know. Knowing something was very wrong when my GP blew off a painful lump in my dominant arm that was also effecting the use of my handed, I sought a new GP. To my good fortune I finally found the right doctor who chose not to see other medical records and start fresh. In a short time I was also seeing a new Immunologist who made my diagnoses on my second visit. Even though I had been tested 3 other times in the last year for Lupus, it was never found, until now. I am on Pacquinil and feeling tons better in one months time. He also followed the lead of the Immunologist and determined I had MGUS with a rising M-spike from a few months previous. I am going through all the tests and determining what the mass in my arm is( is it myeloma related or not) a biopsy and bone marrow test are scheduled.
I can not lie and say that these are not scary thing, but after so many years of pain and suffering I am so relieved to have an answer. It may not be the answer I had hoped for, but at least now I know who the demon is that i am fighting. I work each day to live and eat as healthy a lifestyle as I can. Today I see life remarkably different because not only do I understand my pain and fatigue, but i find renewed joy and beauty in just about everything. I am learning to embrace every precious moment and the wonderful opportunities around me to do good and bring joy into the lives of those around me. The more I am able to do for others in small ways often random acts of kindness, the better I feel my health is. Like others with Multiple Myeloma, ( though i do not know if i am MGUS, SMM, or multiple myeloma,, i too have changed my diet and see benefits there too. I have always been health conious but now i know who the enemy is.I was not addressing certain needs or consuming a few poor food choices.
To me "knowledge " has been key. While I do not yet know what the road ahead will be, the truth is, it already was my lot before this diagnoses. Now I can do the best I can enlisting the help of my new and good doctors, and embracing the treatments that will hopefully provide me with some quality of life for years to come. I am full of hope.
-
Smile happy
Re: Resistance to Chemotherapy
Jenn,
Sorry to hear about your Husband. I am sure things will turn around. Sounds like your Husband and I have the exact opposite presentations of myeloma. Mine is high risk because it typically goes into remission quicker than most patients but relapses quickly using only drugs and autos.
I am the person that is the biggest defender of early allo transplant for younger myeloma patients on this forum, but it sounds odd to me that your Doctor seems to be willing to have your Husband do an allo with progressing disease. Just because he did not respond well to RVD does not mean that he will not respond to another combination and that he is not responsive to chemo. It just means he is not responding to RVD.
Ideally a patient should be in CR prior to an allo. The bad outcomes you see with patients that do allos typically occur because the myeloma starts progressing soon after transplant. I hope your Doctors have some type of plan if your Husband starts progressing soon afterward. Do not just assume they have a plan. Sean Tiernan was a patient in the UK that did an allo with progressive disease. When it started progressing soon after the transplant he had his Doctors tell him they were not sure what to do and that they were in "unchartered territory". They should have had a plan for that prior to transplant. It has to be very frightening for a patient to hear their Doctor say they do not know what to do, especially when it is not uncommon for patients with progressive disease prior to an allo to start progressing soon after one.
An allo transplant is a complicated procedure. Transplanting a healthy Donor's immune system into a cancer patient takes a skilled Doctor. As you know, many myeloma Doctors freely admit that they themselves are not capable of successfully performing an allo. Mine went very smoothly because I had an experienced allo transplant Doctor who had a plan. You should check the statistics on the Be the Match Registry for your transplant centers statistics on allos.
http://marrow.org/Patient/Transplant_Planning/Choosing_a_Transplant_Center/U_S__Transplant_Centers.aspx
Mark
Sorry to hear about your Husband. I am sure things will turn around. Sounds like your Husband and I have the exact opposite presentations of myeloma. Mine is high risk because it typically goes into remission quicker than most patients but relapses quickly using only drugs and autos.
I am the person that is the biggest defender of early allo transplant for younger myeloma patients on this forum, but it sounds odd to me that your Doctor seems to be willing to have your Husband do an allo with progressing disease. Just because he did not respond well to RVD does not mean that he will not respond to another combination and that he is not responsive to chemo. It just means he is not responding to RVD.
Ideally a patient should be in CR prior to an allo. The bad outcomes you see with patients that do allos typically occur because the myeloma starts progressing soon after transplant. I hope your Doctors have some type of plan if your Husband starts progressing soon afterward. Do not just assume they have a plan. Sean Tiernan was a patient in the UK that did an allo with progressive disease. When it started progressing soon after the transplant he had his Doctors tell him they were not sure what to do and that they were in "unchartered territory". They should have had a plan for that prior to transplant. It has to be very frightening for a patient to hear their Doctor say they do not know what to do, especially when it is not uncommon for patients with progressive disease prior to an allo to start progressing soon after one.
An allo transplant is a complicated procedure. Transplanting a healthy Donor's immune system into a cancer patient takes a skilled Doctor. As you know, many myeloma Doctors freely admit that they themselves are not capable of successfully performing an allo. Mine went very smoothly because I had an experienced allo transplant Doctor who had a plan. You should check the statistics on the Be the Match Registry for your transplant centers statistics on allos.
http://marrow.org/Patient/Transplant_Planning/Choosing_a_Transplant_Center/U_S__Transplant_Centers.aspx
Mark
-
Mark
Re: Resistance to Chemotherapy
Mark-
I agree that it seems odd to go forth with the allo, especially since he is not close to CR. We were extremely leery of going this route. It's a tough and bitter pill to swallow, but one that we hope will ultimately bring positive results. We did get opinions from three different myeloma specialists, including MD Anderson, so we are not taking this lightly.
I admit I did not think far beyond the "what if it starts progressing/what if it did not work" but we now have a tentative plan for that. Thank you. Of course we all know that with myeloma, anything can and may happen, everything is subject to change. Fortunately, our transplant team is ranked in the top tier, so we are lucky, and we do feel confident placing my husband's care with this team. I liked the link you provided, it was comforting for me when I double checked!
Thank you for your input, advice and concern! I wish all the best for you.
I agree that it seems odd to go forth with the allo, especially since he is not close to CR. We were extremely leery of going this route. It's a tough and bitter pill to swallow, but one that we hope will ultimately bring positive results. We did get opinions from three different myeloma specialists, including MD Anderson, so we are not taking this lightly.
I admit I did not think far beyond the "what if it starts progressing/what if it did not work" but we now have a tentative plan for that. Thank you. Of course we all know that with myeloma, anything can and may happen, everything is subject to change. Fortunately, our transplant team is ranked in the top tier, so we are lucky, and we do feel confident placing my husband's care with this team. I liked the link you provided, it was comforting for me when I double checked!
Thank you for your input, advice and concern! I wish all the best for you.
-
Jenn - Name: Jenn
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September 2011
- Age at diagnosis: 45
5 posts
• Page 1 of 1
Return to Treatments & Side Effects