[Tina28]

What are the worst side effects of Velcade?

by Tina28 on Sat Apr 09, 2016 3:27 am

My father's doc is planning to have my father start Velcade soon. He was given dex, melphalan, and thalidomide before.

I am imagining all the worst side effects that my father could possibly get. I do not want him to suffer as I heard from many people (with different type of cancer) that chemotherapy is the worst medical experience, up to the point that some people choose not to continue with it and just let their body give up. Is it really that bad or am I just being paranoid?

I have read postings saying that some people have minimal side effects or can tolerate Velcade very well (but some of them are younger compared to my father).

But still this gives me small hope that my father will be fortunate enough to have minimal painful journey during his Velcade treatment. I have seen him up and down emotionally and it really breaks my heart.

Do tell me what's your worst experience from Velcade and what to expect from Velcade.

Thanks. God Bless

[dogmom]

Re: What are the worst side effects of Velcade?

by dogmom on Sat Apr 09, 2016 5:27 am

So sorry for you Dad's diagnosis, but you have found a great place here. My husband has three more rounds of a 16 round chemo induction and one of his meds is Velcade. His doctor has chosen to give it IV instead of injection and he has had no side effects except to make his myeloma symptoms MUCH better. But I know in reading some others have had some effects.

Good luck to your Dad and your family.

[Little Monkey]

Re: What are the worst side effects of Velcade?

by Little Monkey on Sat Apr 09, 2016 8:43 am

Hi Tina,

The worst side effects I've seen with my dad and bortezomib (Velcade) is the occasional worsen­ing of leg pain; he also appears to have a slight bit of hearing loss.

If you have the image of someone on Velcade being bedridden, total loss of hair, grey-looking, and very sickly, this is not generally consistent with someone on Velcade.

[KarenaD]

Re: What are the worst side effects of Velcade?

by KarenaD on Sat Apr 09, 2016 9:02 am

Hi Tina,

I have experienced both peripheral neuropathy and minor ocular issues (red, swollen, itchy eyes, stys etc.) while on Velcade.

I hope your Dad tolerates Velcade well, as it is typically a very effective drug in treating myeloma.

Best of luck to your Dad.

Karen

[Tina28]

Re: What are the worst side effects of Velcade?

by Tina28 on Sat Apr 09, 2016 10:16 am

Thanks all for the replies. Much appreciated.

Will nausea and loss of appetite definitely happen during this treatment? I imagine someone on Velcade being sick day and night and constantly in great pain (as the medication trying to kill off the bad cells).

Right now my father has lost his appetite and sleeps a lot. His hemoglobin is only 9.4. He constantly say that he is having body ache.

Karen, how would you describe peripheral neuropathy?

[Multibilly]

Re: What are the worst side effects of Velcade?

by Multibilly on Sat Apr 09, 2016 10:44 am

Hi Tina,

If you read through folks experiences with Velcade on this forum, you will likely find that peripheral neuropathy (PN) is the most serious complaint that folks usually have. The important thing with PN is not to be stoic and to tell your doctor if you are experiencing it right away (should it occur). If you let the PN go too far and too long, then one can experience permanent PN. However, if one is experiencing an unacceptable level of PN, a doc can dial back the Velcade dose (or consider a different drug).

Also, while most doctors seem to have switched over to the subcutaneous injection of Velcade, you want to be sure that is the delivery method being used. The older IV infusion of Velcade tends to cause more incidents of PN.

Lastly, there is also an injection trick that some facilities use when delivering Velcade to help minimize irritation around the injection site. You should ask about this. See:

https://myelomabeacon.org/forum/subcutaneous-velcade-air-bubble-method-t5093.html

[KarenaD]

Re: What are the worst side effects of Velcade?

by KarenaD on Sat Apr 09, 2016 11:46 am

Hi Tina,

The peripheral neuropathy that I experienced while on Velcade was mainly a feeling of numbness in my hands and feet, although some people also experience peripheral neuropathy as pain and/or tingling in their extremities. For me, the numbness was not constant, but it was bothersome; especially if it occurred when I was trying to do something manual, such as preparing a meal. Though not completely gone, my peripheral neuropathy is much better now that I am off Velcade.

I know you are very worried about your Dad, and although each person’s response to Velcade is unique, this drug is not typically associated with severe nausea or loss of appetite.

Karen

[coop223]

Re: What are the worst side effects of Velcade?

by coop223 on Sat Apr 09, 2016 9:23 pm

I just get a rash and a little tired on the Velcade. I get the shot instead of iv. No other side effects and I've been self injecting for 1.5 years.

[Christa's Mom]

Re: What are the worst side effects of Velcade?

by Christa's Mom on Sat Apr 09, 2016 10:08 pm

Hi Tina,

EJ had Velcade for his induction therapy. The worst side effect he had was shingles! Make sure the doc gives your dad acyclovir to help prevent shingles. Even if he's had them before!

Good luck.

Lyn

[Davidg]

Re: What are the worst side effects of Velcade?

by Davidg on Sun Apr 10, 2016 2:23 pm

Tina28 asked:

Will nausea and loss of appetite definitely happen during this treatment? I imagine someone on Velcade being sick day and night and constantly in great pain (as the medication trying to kill off the bad cells).

I had Velcade twice a week for three months and the only side effects I had were a small red patch at the site of the injection and mild peripheral neuropathy in my feet (which pretty much went away a few weeks later). I had no nausea or anything like that and no fatigue.

Everyone is of course different and some people do get more severe side effects but it's worth bearing in mind that Velcade is not a "traditional" chemo drug (it doesn't affect dividing cells - so no hair loss or anything like that). It works in a completely different way.

Best wishes ,

David