Pat Killingsworth Pat Killingsworth

Second opinion important at relapse/Cytoxan users face bladder cancer risk

Yesterday I wrote:

“And your doctor won’t always think to suggest using some of the older, less often used options once Revlimid and Velcade no longer work.”

I’ve got to tell you, I have tried to discuss “out there” salvage therapy option with my myeloma specialist and I must tell you–I’m not impressed.

I got the “Let’s not worry about that until we get there.” look.

Listen, I just wanted to follow-up and stress how patients definitely need a second and possibly third or even fourth opinion when that salvage therapy day comes.

One specialist is likely to try an older drug, while another will only look forward to compassionate use programs for newer, experimental drugs.

I think that you need to use both options!

Hopefully you (or I) won’t be in this position anytime soon.  But when we are, we need to look both forward and back to effectively use the Loren Liedl approach to living 14 years.

Moving on, a regular reader forwarded me this warning yesterday:

Hey Pat,

I’m glad to hear that you’re doing better and will be able to go home today.  Thank goodness Patti was watching over you and made sure that you got to the doctor.

I have information on a secondary cancer risk that I want to share.  When I was diagnosed I was put on the CyBorD (cytoxan, Velcade, dex) regime as induction chemo.  After 6 months of chemo (November 2010 – April 2011) I was in remission and have remained fairly stable since then without a transplant and with a maintenance regime of very low dosage (5 mg) Revlimid.  Last week a routine urine analysis turned up some blood in my urine, and I am now going to be tested for bladder cancer.  At first I thought this was an overreaction, but a little bit of research revealed that cytoxan poses a very real risk for bladder problems including cancer.  More digging revealed that another drug (Mesna) can be taken along with the cytoxan to reduce potential effects on the bladder.  I haven’t had a chance to talk to my doctor yet so don’t know why Mesna was not prescribed in my case.  However, I thought you might be able to work this very real secondary cancer risk into one of your blogs, alerting fellow patients to the risks from cytoxan and the potential benefit to be gained from Mesna.

 I hope you continue to feel better as the day goes on- Holt

Thanks, Holt! Just what we don’t need–another secondary cancer risk to worry about!

Please keep us updated.  Anyone reading have experience with any of this?

Feel good and keep smiling!  Pat