[gardengirl]

CyBorD / VCD side effects

by gardengirl on Wed Oct 29, 2014 12:06 pm

Hi All,

Had my first CyBorD [cyclophosphamide, Velcade, dexamethasone; aka VCD] treatment yesterday and it went well. A few hours later I got a bit queasy but toughed it out until this morning, when I finally took a Zofran and felt better almost instantly! So I have 2 questions:

1. For those who have done weekly CyBorD, did your side effects change from week to week? Did they get better, worse, stay the same? (I realize everyone will react differently!)
2. (For pre-menopausal women): Did it affect your cycles? (Sorry, guys!)

Thanks so much!!!

[BeatMyeloma]

Re: CyBorD / VCD side effects

by BeatMyeloma on Wed Oct 29, 2014 12:20 pm

My mother was on CyBorD when initially diagnosed in 2008 and did another couple months recently. The second time around was a lot easier than the first!

She generally tolerated it well and symptoms were the same week to week. After dex Thursday night, Cytoxan taken orally during the day Friday and a subcutaneous Velcade shot Friday afternoon, she would feel like she had a low-grade flu on Saturday and feel better Sunday.

The best advice I can give you is to really stay on top of your Zofran! Mom often felt nauseated on Saturdays but never actually vomited, thanks to Zofran.

As we told her, no one is giving you a reward for suffering!

[Lev]

Re: CyBorD / VCD side effects

by Lev on Wed Oct 29, 2014 5:56 pm

Hi gardengirl,

I was treated with VCD like you.

I got ondansetron every morning before the treatment with cyclophosphamide, and the two next mornings. It was ordinated up front.

I had no problems with nausea or anything like it. I do not even know if I would have had problems without ondansetron.

Ondansetron = Zofran.

I was told not to wait until I felt bad, but to take the tablets beforehand.

After some weeks I got light neuropathy in my feet, Velcade side effects. But nothing serious. That was about all during the 3 x 3 weeks treatment

May I ask you: What country are you being treated in, and is it initial treatment before ASCT?

Best regards

[cindylouise]

Re: CyBorD / VCD side effects

by cindylouise on Thu Oct 30, 2014 6:17 am

My husband did cyclophosphamide (Cytoxan) / Velcade only.

His side effects were similar to yours. They stayed pretty much the same throughout treatment. But he took the Zofran proactively from the time they started his infusions and for a couple days after. If he didn't take it, he couldn't eat. And if he didn't eat he would get sick and had a blinding headache that sent us to the ER once.

I would say always take the Zofran for a while, no sense in toughing it out.

Best of luck on this treatment, worked well for my husband!

[gardengirl]

Re: CyBorD / VCD side effects

by gardengirl on Thu Oct 30, 2014 2:57 pm

Thanks for the replies so far!

Lev,

I'm in the U.S. and I'm not sure if I will go the SCT route yet. Will definitely collect stem cells and then go from there. I am only in the early stages (in fact, I was considered smoldering multiple myeloma until the new guidelines advanced me into the treatment-needed category ... ultra-high-risk SMM).

[NZMum]

Re: CyBorD / VCD side effects

by NZMum on Fri Oct 31, 2014 12:22 am

Hi Garden Girl.

I was diagnosed April, had 3 cycles of VCD and SCT September.

I was lucky and had very little nausea during those three cycles but required Zofran while having SCT. Don't know about others but found it causes serious constipation. I'm sure it could set concrete!

There are alternatives that are as effective, such as cyclizine and Motilium (domperidone). Sorry, I'm in New Zealand, but you should be able to find out the names used in your country. Just saying it's something to be aware of. There are a variety of anti nausea meds out there. It's just a case of finding the best for you.

Your second question - My cycle stopped a couple of months after starting treatment and I was advised it probably wouldn't start again. I still get headaches each month and think I have 'power surges,' but they don't seem as bad as some describe.

I hope this helps and your treatment goes well.

Jen

[gardengirl]

Re: CyBorD / VCD side effects

by gardengirl on Fri Oct 31, 2014 2:01 pm

Thank you, Jen. (By the way, my nephew is at the Kaingaroa Timber Forest studying the New Zealand falcon!)

It's only been 3 days, but I'm definitely feeling it (was hoping I'd be one that had no issues) and tonight is Halloween! Can't even think about candy now (bummer!) I hope next month is better.

[KimT]

Re: CyBorD / VCD side effects

by KimT on Sat Nov 01, 2014 5:41 pm

I had very few side effects from CyBorD, which I was on for a few months before Revlimid replaced the Cytoxan.
But the one major thing is that it sent me into immediate menopause. I was regular up until I started chemo in August 2013 and now have not had a period since. No longer on chemo, had SCT in August 2014.