[redcarnation]

My 2nd time on Velcade

by redcarnation on Thu Sep 08, 2011 8:59 pm

I have had multiple myeloma since 2004, officially diagnosed in Feb 2005 when I started treatment and I had treatments in 2005, 2008 and now 2011. I am wondering if anyone else has had treatment of Velcade twice, meaning (for me) in 2008 and now 2011. I seem to be having many more side effects this time which are very debilitating. They include shivering (usually associated with a high temp), vomiting, diarrhoea, peripheral neuropathy including stabbing pains in fingers and feet, extreme fatigue & lethargy, initially breathlessness now subsided, & many aches and pains everywhere. The doctors and nurses are ignoring my pleas and saying I have to continue regardless.

[Ritz]

Re: My 2nd time on Velcade

by Ritz on Thu Sep 08, 2011 9:55 pm

I have been taking vel since app. Nov of last year. I have had it 3 different times with generally four to five cycles each time. I was getting it twice a week and the only side effect was some
PN towards the end of the cycles. I hope the best for you.

[Jennifer]

Re: My 2nd time on Velcade

by Jennifer on Thu Sep 08, 2011 11:16 pm

Thank you Ritz

[Dr. Ken Shain]

Re: My 2nd time on Velcade

by Dr. Ken Shain on Fri Sep 09, 2011 9:00 am

I am sorry to hear that you are having a difficult time. The reintroduction of a drug that was successful in controlling disease, especially when used 2-3 years ago, as appears to the case with you makes a lot of sense. Drugs like Velcade are extremely important in controlling disease. That being said, I always explain to my patients that our goals in therapy-especially relapsed disease- are quantity of life and quality of life. Without know all the details of your disease and health status it is impossible to make specific comments about your physician's therapeutic choices. However, it sounds as though your quality of life is suffering. You may not tolerate the same doses of Velcade that you did in the past.

One of the most (typically the most) difficult side effects of Velcade is the peripheral neuropathy (numbness, tingling, pain). There are a number of supportive meds to help with the pain including lyrica, gabapentin, and/or cymbalta. In some cases narcotics work. But the most important is appropriate dose reductions-reduced dosing, weekly dosing, and more recently subcutaneous dosing are all mechanisms to alleviate/minimize neuropathy.

I believe it is important to balance tolerance with efficacy. One needs to only control disease in the relapsed setting. Your fevers and chills and other side effects are more general are not as easily linked to Velcade, but of course may be. I don't know if you are receiving other agents as well or if your disease may be involved.

If you have questions or concerns, it is alway pertinent to seak an additional opinion at a myeloma referral center.

[redcarnation]

Re: My 2nd time on Velcade

by redcarnation on Sat Sep 10, 2011 6:26 pm

Thank you Dr. Ken Shain for your reply. I have tolerated the last 2 doses of Velcade much better than initially as they have put me on gabapentin for the stabbing pains in my hands and feet which is a great help and also palonosetron for the vomiting which is so much better than the maxalon tabs. So my world is a lot rosier than when I first posted my comments. I live in Perth, Australia so where I go for treatment is limited. Thank you again for your input.

[Perseverance]

Re: My 2nd time on Velcade

by Perseverance on Fri Sep 30, 2011 10:59 am

redcarnation,

The stabbing pain is probably neuropathy, which is a common side effect of intravenous administration of Velcade. To combat this, many institutions have been administering Velcade subcutaneously (injected into fatty tissue like a standard needle). I'm not sure if this is being done in Australia yet, but you seem to be a perfect candidate for it. Mention it to your doctor.

[redcarnation]

Re: My 2nd time on Velcade

by redcarnation on Sun Oct 02, 2011 7:06 pm

Thank you Perseverance, I will ask tomorrow when I go for my next dose of Velcade about the subcutaneous bit. Overall I am managing much better with the Velcade, thank goodness and I am crediting the Palonosetron they are giving me for this.

[redcarnation]

Re: My 2nd time on Velcade

by redcarnation on Sat Nov 05, 2011 9:26 pm

Hello everyone! I would just like to update you on my treatment. I had another dose of Velcade two days ago and I am hoping it is my last. My Kappa light chains have receded markedly, so I am hoping they will be normal when I see the Dr in about a week and a half. What made the Velcade bearable I am crediting the palonosetron [Aloxi] which took away the vomiting, most of the nausea and most of the other side effects I was having. I would like to THANK all who responded to my dilemma initially and it makes such a difference to know there are some people "out there" who care.
Jennifer

[Boris Simkovich]

Re: My 2nd time on Velcade

by Boris Simkovich on Sun Nov 06, 2011 3:28 pm

Thanks for updating us on how things are going for you, redcarnation. It's great to hear that you've been responding so positively to the Velcade and also that you've managed to get the nausea you were experiencing under control.

Please stop by occasionally going forward to let us know how things are going or to ask any new questions that come up.

All the best,

Boris.

[laetetia]

Re: My 2nd time on Velcade

by laetetia on Fri Nov 11, 2011 1:39 am

Yes. The subcutaneous injections are available in Australia. We live in Sydney and my husband just started on his first Subcutaneous Velcade injection today. The doctor was going to administer the IV so I had to specifically ask for it and then he said ok.