I would love to hear anyone's experience with the CyborD treatment regimen – cyclophosphamide (Cytoxan), Velcade, and dexamethasone. That is my husband's plan of treatment, once a week for four months, then a stem cell transplant.
Thank you.
Forums
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Experience with CyborD treatment regimen?
My husband had an excellent response to the Cytoxan/Velcade portion of CyborD. At the time of his diagnosis he was not able to take the Dex, but he responded very well.
Re: Experience with CyborD treatment regimen?
Hi dogmom! In November 2014, I received 25 sessions of radiation to reduce (and eliminate) a plasmacytoma on my T-11 vertebrae. I then chose the CyborD therapy (Cytoxan as opposed to the Revlimid), prior to undergoing a stem cell transplant in May, 2015. (I posted about my stem cell transplant last year, and shared my diagnosis journey with Multiple Myeloma as well).
The treatment worked for me, and I did not suffer a lot of side effects (the fatigue was hard for me to deal with, along with some effects of the dex -- sleeplessness vs high energy bouts). After my transplant, I chose to go back to Velcade injection every two weeks as my maintenance drug (again, as opposed to Revlimid). I also receive a monthly infusion of Zometa.
I have been fortunate to only have developed mild neuropathy in my toes, I have occasional bouts of fatigue, some gi issues and some rashes around the injection area (in spite of the nurses all using the "bubble" method of injection), but all in all, the therapy continues to do it's job, and keeps my Myeloma at bay. I hope that your husband's therapy is successful and un-symptomatic! I want to thank you for supporting your husband through this. (My husband's support for me has meant the world to me. Every night, when he turns down the covers on our bed, I am reminded of his love. I don't even need a chocolate on my pillow to feel that way! <smiles>)
The treatment worked for me, and I did not suffer a lot of side effects (the fatigue was hard for me to deal with, along with some effects of the dex -- sleeplessness vs high energy bouts). After my transplant, I chose to go back to Velcade injection every two weeks as my maintenance drug (again, as opposed to Revlimid). I also receive a monthly infusion of Zometa.
I have been fortunate to only have developed mild neuropathy in my toes, I have occasional bouts of fatigue, some gi issues and some rashes around the injection area (in spite of the nurses all using the "bubble" method of injection), but all in all, the therapy continues to do it's job, and keeps my Myeloma at bay. I hope that your husband's therapy is successful and un-symptomatic! I want to thank you for supporting your husband through this. (My husband's support for me has meant the world to me. Every night, when he turns down the covers on our bed, I am reminded of his love. I don't even need a chocolate on my pillow to feel that way! <smiles>)
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computerteacher - Name: Computer Teacher
- Who do you know with myeloma?: self
- When were you/they diagnosed?: November/December 2014
- Age at diagnosis: 58
Re: Experience with CyborD treatment regimen?
Thank you all for your replies. I had breast cancer 11 years ago exactly at this time and our roles were reversed. They are choosing Cytoxan due to kidney issues. I so hope his treatment is complications free and it works. Then on to the stem cell transplant.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Experience with CyborD treatment regimen?
The worst side effect for me is the dex. Wired, moody and grouchy for two days, but do sleep some. 3rd day I just sleep and rest. 4th day, back to normal, or whatever is normal for me.
Velcade and Cytoxan cause some gastrointestinal (GI) issues, but I take ondansetron for relief. I now do 1 shot of Velcade, 600 mg of Cytoxan, and 16 mg of dex once every 3 weeks. Was taking 2 shots per week plus the 600 mg Cytoxan and dex for two consecutive weeks, 1 week off, for 7 months. That was a rough time this past year. Kicked my butt, but got my relapse under control.
Best of luck to you.
Vr Coop
Velcade and Cytoxan cause some gastrointestinal (GI) issues, but I take ondansetron for relief. I now do 1 shot of Velcade, 600 mg of Cytoxan, and 16 mg of dex once every 3 weeks. Was taking 2 shots per week plus the 600 mg Cytoxan and dex for two consecutive weeks, 1 week off, for 7 months. That was a rough time this past year. Kicked my butt, but got my relapse under control.
Best of luck to you.
Vr Coop
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coop223 - Name: derek cooper
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: November 2011
- Age at diagnosis: 57
Re: Experience with CyborD treatment regimen?
My husband takes 40 mg dex, 550 mg Cytoxan, and then the Velcade once a week for four months and then they plan a stem cell transplant. He has only had one week, but fatigue has been his worst symptom. The dex so far has not bothered his sleep.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Experience with CyborD treatment regimen?
Has anyone had gum irritation and pain as a side effect of cyclophosphamide?
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Experience with CyborD treatment regimen?
Dear Dogmom. -- I had wonderful and rapid results from CyBorD, with minimal side effects. I got it every Tuesday for 22 weeks, and the regular side effects were a few nights of trouble sleeping (from the Dex) and a day of diarrhea every Wednesday. Toward the end I also got night sweats from the Dex, and was starting to get a little neuropathy until I quit the chemo and went forward to my transplant.
Here is an excerpt from my early postings:
"... They treated me [with] weekly "CyBorD" ... This started mid-January [2014]. My back [fractured vertebra] seemed to heal itself. By April first, my plasma cell count was back to normal with no sign of the malignant DNA in my marrow biopsy. PET scan showed no active bone lesions and some of the old ones were starting to heal.
... The day after chemo, the dex made me very energetic, gave me a night of insomnia. Something made that diarrhea day, so I got a lot done but only near home! When that wore off, I noticed other things: swollen ankles, trouble reading fine print, and shortness of breath. This was all pretty mild. My blood counts remained at the low end of normal, and it was safe for me to live life normally: shopping, seeing friends and family, going to restaurants, etc. Except for a limp from a post-surgery case of myositis ossificans, I looked normal, too. I realize I was lucky, and that a lot of folks have a hard time with their induction chemo."
Bottom line: CyBorD got me from being in sad shape to being able to go into transplant as an outpatient.
Here is an excerpt from my early postings:
"... They treated me [with] weekly "CyBorD" ... This started mid-January [2014]. My back [fractured vertebra] seemed to heal itself. By April first, my plasma cell count was back to normal with no sign of the malignant DNA in my marrow biopsy. PET scan showed no active bone lesions and some of the old ones were starting to heal.
... The day after chemo, the dex made me very energetic, gave me a night of insomnia. Something made that diarrhea day, so I got a lot done but only near home! When that wore off, I noticed other things: swollen ankles, trouble reading fine print, and shortness of breath. This was all pretty mild. My blood counts remained at the low end of normal, and it was safe for me to live life normally: shopping, seeing friends and family, going to restaurants, etc. Except for a limp from a post-surgery case of myositis ossificans, I looked normal, too. I realize I was lucky, and that a lot of folks have a hard time with their induction chemo."
Bottom line: CyBorD got me from being in sad shape to being able to go into transplant as an outpatient.
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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: Experience with CyborD treatment regimen?
Mister Dana,
Thank you so much for sharing this with me. I so hope this happens to my husband. Are you doing well post transplant?
Thank you so much for sharing this with me. I so hope this happens to my husband. Are you doing well post transplant?
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Experience with CyborD treatment regimen?
Hi Dogmom,
I just had my 10th CyBorD treatment today. I have it every Tuesday. My doc is very pleased with my great response so far, and depending on further blood tests. I will have either 2 more weeks or 6 more weeks of this protocol before my autologous stem cell transplant (ASCT).
Fatigue has been my biggest complaint so far, but I’ve also experienced many of the other typical side effects. For me, it seems every week brings a different side effect, but, thankfully, they don’t all present at the same time.
I’ve experienced:
- Diarrhea (happened on the Wed and Thursday during 2 of the weeks so far)
- Nausea (fairly mild – usually happens Wed-Fri)
- Mild neuropathy in hands
- Red face on Wednesdays (from the dex)
- Some insomnia (usually Wed-Fri).
This may sound strange, but I now also seem to lose my temper quite easily. My BF thinks it’s caused by the dex .
Although the CyBorD protocol is not too bad (compared to other chemo protocols), I do always feel a bit “off” for at least 3 days after treatment. Thus, I am anxious to complete my treatments, and move on to the ASCT.
I hope your husband has a good response to CyBorD and tolerates it well! Wishing you both all the best on this journey.
Karen
I just had my 10th CyBorD treatment today. I have it every Tuesday. My doc is very pleased with my great response so far, and depending on further blood tests. I will have either 2 more weeks or 6 more weeks of this protocol before my autologous stem cell transplant (ASCT).
Fatigue has been my biggest complaint so far, but I’ve also experienced many of the other typical side effects. For me, it seems every week brings a different side effect, but, thankfully, they don’t all present at the same time.
I’ve experienced:
- Diarrhea (happened on the Wed and Thursday during 2 of the weeks so far)
- Nausea (fairly mild – usually happens Wed-Fri)
- Mild neuropathy in hands
- Red face on Wednesdays (from the dex)
- Some insomnia (usually Wed-Fri).
This may sound strange, but I now also seem to lose my temper quite easily. My BF thinks it’s caused by the dex .
Although the CyBorD protocol is not too bad (compared to other chemo protocols), I do always feel a bit “off” for at least 3 days after treatment. Thus, I am anxious to complete my treatments, and move on to the ASCT.
I hope your husband has a good response to CyBorD and tolerates it well! Wishing you both all the best on this journey.
Karen
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KarenaD - Name: Karen
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 4, 2015
- Age at diagnosis: 54
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