Many thanks. I will let you know what reply comes in.
Forums
Re: Starting treatment with trial Rd + Daratumumab
@JPC: Your questions are just the right ones. I just e-mailed the doctor with the questions you suggested. I didn't mention Tom Brokaw though because I doubt they know about him in France
Many thanks. I will let you know what reply comes in.
Many thanks. I will let you know what reply comes in.
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Starting treatment with trial Rd + Daratumumab
Had you all been in my shoes would you have chosen this trial or would you go for convential MPV?
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Starting treatment with trial Rd + Daratumumab
Bonjour Maro, I was interested to see that you have tentatively decided to go on the Daratumumab trial. Many patients in Canada would really like to have a chance to try that monoclonal antibody treatment, and I hope the trial works really well for 'ta maman'! Even if she is on the Rev/DEX arm, you could get good results, as your doctor has said. I have been on RD for the last year, since relapse, and am getting really good results from that (am now almost in a remission again. Even if I don't get right to a remission, would still be happy with these results). Response varies so much from one patient to the next, that you can't predict outcomes though.
Would you know during the course of the clinical trial what 'arm' you were on, or is it a 'double blind' study? Hope it all works out well for you, whatever route you take. Just a cautionary note about thalidomide, that it can cause worse neuropathy than bortezomib can, and definitely more than lenalidomide. So for that reason alone, I would try to avoid that drug if possible. I understand that thalidomide is really and effective drug agains myeloma though, just as are the more recent novel agents. The newer version of administering bortezomib by sub-cutaneous injection reduces neuropathy compared to the IV version into the veins though.
Hope that helps.
Would you know during the course of the clinical trial what 'arm' you were on, or is it a 'double blind' study? Hope it all works out well for you, whatever route you take. Just a cautionary note about thalidomide, that it can cause worse neuropathy than bortezomib can, and definitely more than lenalidomide. So for that reason alone, I would try to avoid that drug if possible. I understand that thalidomide is really and effective drug agains myeloma though, just as are the more recent novel agents. The newer version of administering bortezomib by sub-cutaneous injection reduces neuropathy compared to the IV version into the veins though.
Hope that helps.
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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: Starting treatment with trial Rd + Daratumumab
@Nancy : Thank you for your kind words and re assuring information regarding Rd.
This trial is not a double blind trial. Since Daratumumab is administered via IV they can not inject placebo to those who are in the arm without Dara. So we will know upfront what group we re in.
I would be very releaved and pleased if we were to be put in the Dara group, Nancy. My fear today is ending up in the Rd group with insufficient results.
I have sent an e-mail to our doctor with JPC's recommended questions regarding what would be done incase treatment does not respond properly, etc.. I guess the doctor's answer - which i have not yet received - will shed light and comfort us with the decision of going with this trial.
I wonder if there are any discussions and shared expériences on the forums regarding those who have tried Rd alone. That could possibly be comforting to read;
The final thing which I am a bit unsure of is the t(14;16). In France they do not consider it to be a high risk abnormality and disregard it totally whereas Mayo mSMART classifies it as high risk.
I did look up on Google and found very little to no information that prooves that t(14;16) is really high risk. Even the articles on the beacon never mention it (they all mention del 17p, t(4;14), etc.. but rarely/never 14;16).
By the way Nancy, do you have any kids? If so, how are they coping with your Myeloma?
This trial is not a double blind trial. Since Daratumumab is administered via IV they can not inject placebo to those who are in the arm without Dara. So we will know upfront what group we re in.
I would be very releaved and pleased if we were to be put in the Dara group, Nancy. My fear today is ending up in the Rd group with insufficient results.
I have sent an e-mail to our doctor with JPC's recommended questions regarding what would be done incase treatment does not respond properly, etc.. I guess the doctor's answer - which i have not yet received - will shed light and comfort us with the decision of going with this trial.
I wonder if there are any discussions and shared expériences on the forums regarding those who have tried Rd alone. That could possibly be comforting to read;
The final thing which I am a bit unsure of is the t(14;16). In France they do not consider it to be a high risk abnormality and disregard it totally whereas Mayo mSMART classifies it as high risk.
I did look up on Google and found very little to no information that prooves that t(14;16) is really high risk. Even the articles on the beacon never mention it (they all mention del 17p, t(4;14), etc.. but rarely/never 14;16).
By the way Nancy, do you have any kids? If so, how are they coping with your Myeloma?
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Starting treatment with trial Rd + Daratumumab
Just a quick note on my experience with Rd. I was diagnosed in May of 2012 and they started me immediately on that combination. The Revlimid seemed to cause no side effects whatsoever, but I had the usual response to the dex (WAY too much energy one day, WAY too little for the following couple of days). I think I went for six cycles (can't remember) and ended up with a very good partial response. I then did one cycle of bortezomib (sub-cutaneous, which is pretty much all they do now at the cancer center I go to) and high dose dex. That took me down very close to a complete response. I had an autologous stem cell transplant after that and have been on 10 mg of Revlimid daily for the 2-1/2 years since. My light chain numbers have been in normal ranges for the last couple of years and there have only been two months in the last year and a half in which I've had a detectible M-spike. (As you can imagine, I'm knocking on every wooden surface within reach as I write that.) So far, no side effects from the Revlimid maintenance.
I am hoping that daratumumab is available for me when I relapse - it seems very promising. If I were your mom, I'd hope to get into that arm of the trial but the combination of Revlimid and dexamethasone can be very powerful on its own. She may respond quite well to that and if she does, the daratumumab can remain in the arsenal for future use.
I am hoping that daratumumab is available for me when I relapse - it seems very promising. If I were your mom, I'd hope to get into that arm of the trial but the combination of Revlimid and dexamethasone can be very powerful on its own. She may respond quite well to that and if she does, the daratumumab can remain in the arsenal for future use.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Starting treatment with trial Rd + Daratumumab
So I have some additional info.
The doctor says that we can exit the trial at any time if we wish to do so. If the results are not good, we can definitely switch to something else maybe containing Velcade. Most probably back to VMP.
Tomorrow we have our final appointment for BMB and some x-rays and blood checkup before enrolling for the Rd trial with a 50% possibility of being in the daratumumab arm.
I really hope we are making the right choice and I hope that if we are not in the daratumumab arm that the Rd alone will be effective...
Such hard moments when decisions need to be made. All we can do is let ourselves go into the hands of the docs in the hope that all goes well.
Also, the doc mentioned a new trial which he sort of suggested we could give a try: KMP (Kyprolis, melphalan, prednisone). Apparently after some reading Kyprolis sounds very promising. About twice as effective as Velcade.
Any thoughts on our final decision to go with the Rd trial?
The doctor says that we can exit the trial at any time if we wish to do so. If the results are not good, we can definitely switch to something else maybe containing Velcade. Most probably back to VMP.
Tomorrow we have our final appointment for BMB and some x-rays and blood checkup before enrolling for the Rd trial with a 50% possibility of being in the daratumumab arm.
I really hope we are making the right choice and I hope that if we are not in the daratumumab arm that the Rd alone will be effective...
Such hard moments when decisions need to be made. All we can do is let ourselves go into the hands of the docs in the hope that all goes well.
Also, the doc mentioned a new trial which he sort of suggested we could give a try: KMP (Kyprolis, melphalan, prednisone). Apparently after some reading Kyprolis sounds very promising. About twice as effective as Velcade.
Any thoughts on our final decision to go with the Rd trial?
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Starting treatment with trial Rd + Daratumumab
Well here we go. Mom got put into the Rd arm alone without daratumumab unfortunately.
She started on Monday with 25 mg Rev daily (3 weeks on, 1 week off) + 40 mg dex weekly.
Hope this combo works alone. Wish us luck!
Best to all.
Maro
She started on Monday with 25 mg Rev daily (3 weeks on, 1 week off) + 40 mg dex weekly.
Hope this combo works alone. Wish us luck!
Best to all.
Maro
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Starting treatment with trial Rd + Daratumumab
Thank you for the update, Maro, and GOOD LUCK!!
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JPC - Name: JPC
Re: Starting treatment with trial Rd + Daratumumab
Good luck Maro , to you and to your mother. She is lucky to have you as a caregiver too! Hopefully the new treatments will work well and quite quickly.
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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: Starting treatment with trial Rd + Daratumumab
Bonne chance a vous et votre mere avec Revlimid et dex.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
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