Gary
Your side effects are very similar to mine except for a substantially increased effect. Glad to hear of your new protocol, early reports are encouraging. If possible, please keep us informed here.
I've just about to finish Cycle 11, 55 weeks. I also just had my second cataract surgery due I suspect strongly to dex. I also retired at the same time so stress has been through the roof. Everything is settling down now and the focus is family and treatment.
The major side effects remain due mainly to dex, early study 40 mg once weekly, then 20 mg once weekly and after Cycle 12 reduced again depending on numbers. Main effects are weakness, especially the legs and lower back. Shortness of breath and very reduced cardio vigour.
Effect of treatment are still outstanding and stable. The kappa lights lead the relapse charge this time. M-spike was following hard but not the early concern like the kappa numbers. My kappa numbers are in the mid-normal range and traces of the M-spike remain. I have never been myeloma free; even after the autologous stem cell transplant years ago, trace M-spikes remained.
I am very happy with my response and with weighing the side effects against stomping myeloma (sorry couldn't help pun) I'm happy to stay on the study. My level of side effects are stringent but very manageable without work duties.
I tried very hard to make 65 to retire. Probably enduring more than necessary but the cognitive losses made it hard and then impossible to be an effective sales manager. My family drew a lot of confidence and strength from watching daddy go to work for 6 years after diagnosis. It was a challenge, but I'm proud that I endured. I was just plain blessed it was even possible. So many of us are ravaged by this disease and treatment.
Forums
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Canuck Bob - Name: Bob
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb. 2011
- Age at diagnosis: 57
Re: Selinexor, Velcade, and dex or Kyprolis and dex?
I have been on the STOMP trial and in my 15th 5 week cycle now. Yes, over 70 weeks of treatment infusions once weekly!
The selinexor, Velcade, and dexamethasone cocktail is working fine. We have reduced the dexamethasone gradually over the term. Did I mention I hate dex almost as much as my family does! Selinexor started at 100 mg but was reduced to 80 mg as data for dosage grew. The higher dose dexamethasone period nicely controlled nausea from the selinexor.
Nausea is now the most recognizable side effect. My liver and kidney functions have always been excellent. No effect on blood numbers. However, even post stem cell transplant, my general health and blood counts have remained high and stable, thank goodness.
I am flirting with a complete response (CR), currently classed as a very good partial response (VGPR). It has been 8 years since diagnosis and even after the transplant my markers have never been this low. The treatment included the necessary step of permanent disability retirement. I worked as a salesman up to this spring.
There is hope in the treatment chemical pipeline. My oncologists are excited by the options available or coming for multiple myeloma. Merry Christmas or Happy Holiday, whatever floats your boat.
The selinexor, Velcade, and dexamethasone cocktail is working fine. We have reduced the dexamethasone gradually over the term. Did I mention I hate dex almost as much as my family does! Selinexor started at 100 mg but was reduced to 80 mg as data for dosage grew. The higher dose dexamethasone period nicely controlled nausea from the selinexor.
Nausea is now the most recognizable side effect. My liver and kidney functions have always been excellent. No effect on blood numbers. However, even post stem cell transplant, my general health and blood counts have remained high and stable, thank goodness.
I am flirting with a complete response (CR), currently classed as a very good partial response (VGPR). It has been 8 years since diagnosis and even after the transplant my markers have never been this low. The treatment included the necessary step of permanent disability retirement. I worked as a salesman up to this spring.
There is hope in the treatment chemical pipeline. My oncologists are excited by the options available or coming for multiple myeloma. Merry Christmas or Happy Holiday, whatever floats your boat.
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Canuck Bob - Name: Bob
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb. 2011
- Age at diagnosis: 57
Re: Selinexor, Velcade, and dex or Kyprolis and dex?
Thanks for sharing your results so far from the selinexor (STOMP) trial, Bob! That is really good news that it is working so well.
I think it is great that selinexor is from a potential new class of myeloma therapies. There are differing biochemical approaches to treating myeloma. I have been treated with Velcade also, which is a proteasome inhibitor , and Revlimid, an immunomodulatory agent, as well as dexamethasone, a corticosteroid. I hope that selinexor eventually is approved as a new myeloma drug (i.e., that all the trials go well).
Happy New Year to you and your family!
I think it is great that selinexor is from a potential new class of myeloma therapies. There are differing biochemical approaches to treating myeloma. I have been treated with Velcade also, which is a proteasome inhibitor , and Revlimid, an immunomodulatory agent, as well as dexamethasone, a corticosteroid. I hope that selinexor eventually is approved as a new myeloma drug (i.e., that all the trials go well).
Happy New Year to you and your family!
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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: Selinexor, Velcade, and dex or Kyprolis and dex?
Thanks Nancy. The appeal of the trial for me was the potential new class of myeloma treatments.
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Canuck Bob - Name: Bob
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb. 2011
- Age at diagnosis: 57
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