I was recently diagnosed on Dec 8th, 2013 with multiple myeloma. I was started on induction with CyBordD protocol and just finished my first 6 weeks, and one round of Zometa.
I have had virtually no side effects except for the dexamethasone making me hungry and keeping me awake the first day. Other than that it has been very good. The Zometa caused bone pain and body aches for 2 days and has been worse than the myeloma drugs. And being a pharmacist I thought I knew what to expect, but have been pleasantly surprised so far.
Now I'm hoping for a good checkup in a few weeks when they recheck everything. So far so good.
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Re: Experiences with CyBorD (VCD) induction therapy?
In answer to Dr. Siegel's comment that he thought this regimen would be very well tolerated and that patients should be able to continue to work ... I take my Velcade subq on Thursdays along with oral 40mg dex and oral 800mg Cytoxan and I get along very good with no nausea or other side effects. I am able to maintain a normal work schedule as an active pharmacist and able to work on average 45hr /workweek. Tthat was one of my biggest fears when I was diagnosed -- that it would affect my ability to work, and that I would then lose my company health insurance benefits. This regimen allows me to function normally and work still. That's a huge relief.
Re: Experiences with CyBorD (VCD) induction therapy?
My Husband Eric was diagnosed 23rd September 2013 and he started on Cybordex 1st October 2013 and was told that he would need 4 to 6 lots of treatment. He stays in hospital for 11days ( they don't do outpatients here in Bulgaria) then home for 2 weeks and back again to start the same procedure. After the 3rd round he got a chest infection which turned to pneumonia and they delayed treatment for 4 weeks. He went back last Thursday for what he thought was 11 days but after testing they told him that he could go home Monday (yesterday) as all his numbers are normal.
He arrived home last night after having his first dose of Zometa and he is doing so well. He has had a few side effects from this drug, feeling fluey, high colour, tired but hardly any side effects from Cybordex. He had sickness and diarrhea the first round but none since. His finger nails have gone very thin and ridged but that really is about all he's had. He has also gone from 62 kilos to 69.5 in the last 2 weeks and today was stacking our wood. We are so delighted with his reaction to this treatment and it has been no where near as bad as we both feared.
I don't know if he is in remission as we have a language problem, but the professor said that he is now a normal man which I suppose is his way of saying that he is in remission. He goes back 27th of this month for 2 or 3 days for his Zometa and whatever else he needs for his maintenance.
He arrived home last night after having his first dose of Zometa and he is doing so well. He has had a few side effects from this drug, feeling fluey, high colour, tired but hardly any side effects from Cybordex. He had sickness and diarrhea the first round but none since. His finger nails have gone very thin and ridged but that really is about all he's had. He has also gone from 62 kilos to 69.5 in the last 2 weeks and today was stacking our wood. We are so delighted with his reaction to this treatment and it has been no where near as bad as we both feared.
I don't know if he is in remission as we have a language problem, but the professor said that he is now a normal man which I suppose is his way of saying that he is in remission. He goes back 27th of this month for 2 or 3 days for his Zometa and whatever else he needs for his maintenance.
Re: Experiences with CyBorD (VCD) induction therapy?
Thanks all for your answers! and I hope all the best for you all in your treatments!
From the answers that touched on the topic of what number to watch, it seems that M Spike is the single most important number? Do you/your doctor watch other numbers equally closely?
From the answers that touched on the topic of what number to watch, it seems that M Spike is the single most important number? Do you/your doctor watch other numbers equally closely?
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orchid - Name: orchid
- Who do you know with myeloma?: brother
- When were you/they diagnosed?: dec 27 2013
- Age at diagnosis: 45
Re: Experiences with CyBorD (VCD) induction therapy?
My brother started his CyBorD treatment:
day 1 take all 3
day 2 dex
day 3 dex
day 4 dex
day 8 take V and Cyc
day 9 dex
day 10 dex
day 11 dex
day 12 dex
day 15 take V and Cyc
This is how it can last for 2 month. and then dex will be reduced to once a week to continue the 4-6 cycles needed
Now we are at day 12 dex is not taken yet.
Major symptoms (other than the sleep and awakeness of Dex)
- Major hiccups in the first week that lasted 4 days and eased once Dex was done, it resumed in week 2 but less intensely. Anyone seen such an impact?
- Major back pain that has increased more intensely over the course of the treatment to the degree that he has to sleep with his back inclined. to get stand up cause pain and certainly it affects mobility. his tolerance for pain is high, so it must be very painful.
Note about back pain: on December 23rd, a lengthy back pain of 15 days brought my brother to the hospital that showed him very anemic due to his iga lambda myeloma. But that initial pain has subsided after a couple of blood transfusion and that pain is nothing compared to the pain that started with the treatment.
A full X- ray was done and only a suspicious spot was found in the Spine. it has been CT scanned and were no lesion found.
Bone density test was done and was found to have osteo only in the spine but NOT in the femur. The osteo case was not new and was not declared to be risky by the Dr.
My question is has anyone experienced such major back pain as a result of induction treatment ( CyBorD or other ex. RVD) .
Doctor suggested to use Tylenol [acetaminophen, paracetamol] for the pain it did not help, and now we are trying a higher dose of anti-inflammatory painkiller to see if it helps (too early to tell need few days to see if it does).
Thanks all for your thoughts on what could be the issue to help us with the discussion with the treating hemo-oncologist.
If it was not for the back pain my brother would be doing ok even this early. He has seen some positive results already in his breathing, he was quite anemic before (but did not realize how bad it was as it drags you down so slowly). Now when he breath he can see the difference in the amount of oxygen that he can in take.
day 1 take all 3
day 2 dex
day 3 dex
day 4 dex
day 8 take V and Cyc
day 9 dex
day 10 dex
day 11 dex
day 12 dex
day 15 take V and Cyc
This is how it can last for 2 month. and then dex will be reduced to once a week to continue the 4-6 cycles needed
Now we are at day 12 dex is not taken yet.
Major symptoms (other than the sleep and awakeness of Dex)
- Major hiccups in the first week that lasted 4 days and eased once Dex was done, it resumed in week 2 but less intensely. Anyone seen such an impact?
- Major back pain that has increased more intensely over the course of the treatment to the degree that he has to sleep with his back inclined. to get stand up cause pain and certainly it affects mobility. his tolerance for pain is high, so it must be very painful.
Note about back pain: on December 23rd, a lengthy back pain of 15 days brought my brother to the hospital that showed him very anemic due to his iga lambda myeloma. But that initial pain has subsided after a couple of blood transfusion and that pain is nothing compared to the pain that started with the treatment.
A full X- ray was done and only a suspicious spot was found in the Spine. it has been CT scanned and were no lesion found.
Bone density test was done and was found to have osteo only in the spine but NOT in the femur. The osteo case was not new and was not declared to be risky by the Dr.
My question is has anyone experienced such major back pain as a result of induction treatment ( CyBorD or other ex. RVD) .
Doctor suggested to use Tylenol [acetaminophen, paracetamol] for the pain it did not help, and now we are trying a higher dose of anti-inflammatory painkiller to see if it helps (too early to tell need few days to see if it does).
Thanks all for your thoughts on what could be the issue to help us with the discussion with the treating hemo-oncologist.
If it was not for the back pain my brother would be doing ok even this early. He has seen some positive results already in his breathing, he was quite anemic before (but did not realize how bad it was as it drags you down so slowly). Now when he breath he can see the difference in the amount of oxygen that he can in take.
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orchid - Name: orchid
- Who do you know with myeloma?: brother
- When were you/they diagnosed?: dec 27 2013
- Age at diagnosis: 45
Re: Experiences with CyBorD (VCD) induction therapy?
On the issue of the hiccups, they are, as you suspect, probably a result of the dex. Here are two discussions in the forum with some suggestions on how to deal with it.
https://myelomabeacon.org/forum/velcade-bortezomib-hiccups-t2235.html
https://myelomabeacon.org/forum/hiccups-and-cytoxan-t1132.html
https://myelomabeacon.org/forum/velcade-bortezomib-hiccups-t2235.html
https://myelomabeacon.org/forum/hiccups-and-cytoxan-t1132.html
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JimNY
Re: Experiences with CyBorD (VCD) induction therapy?
thanks JimNY!
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orchid - Name: orchid
- Who do you know with myeloma?: brother
- When were you/they diagnosed?: dec 27 2013
- Age at diagnosis: 45
Re: Experiences with CyBorD (VCD) induction therapy?
I am wondering if anyone can weigh in on the back pain?
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orchid - Name: orchid
- Who do you know with myeloma?: brother
- When were you/they diagnosed?: dec 27 2013
- Age at diagnosis: 45
Re: Experiences with CyBorD (VCD) induction therapy?
Blayz commented on this just earlier this month.
https://myelomabeacon.org/forum/side-effects-of-vcd-cybord-t2717.html
https://myelomabeacon.org/forum/side-effects-of-vcd-cybord-t2717.html
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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