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Chemo Cocktails


#1

2 yrs ago when I 1st found my tumor and stared my treatment I was told for the chemo part I would be taking Ifosfomide/Doxirubicin and Mesna. I live 250 miles from the Cancer Clinic that initially treated me with RAD and surgeries. “Chemo can be done anywhere” I was told, so I had my chemo done near my home and at a MUCH smaller facility. I NEVER felt comfortable with the Onc Dr I was seeing near my home but I was told a cocktail is a cocktail and you can have it done anywhere and I don’t need to “like” a Dr for him or her to be effective.
Well, I left that Onc Dr and had all my documents transferred and I read on the paperwork that the Onc Dr ordered the cocktail of IFOSFOMIDE-PIRARUBICIN/MESNA. He replaced the Doxorubicin with Pirarubicin. Has ANYONE ever heard of this? The Onc Dr said “no, Pira is the correct drug”. He’s useless.
I KNOW the original plan (with Onc Dr’s who’d actually dealt with SS) was to use Doxorubicin, not Pirarubicin.
The orders were clear to run Ifo-Doxo with Mesna. Pirarubicin is for breast cancers and such and not for SS isn’t it?
CAN ANYONE HELP? PLEASE?
I’m having what feels like heart issues now and having tests done this week. I feel worse physically now than I did 8 months ago and I finished my chemo 14 months ago!

I am free of ANY signs of Cancer and I am VERY grateful!

Y’all hang in there & keep up the good and tough Fight!
Popeye


#2

Pirarubicin is similar to doxorubicin but apparently, there hasn't been any study to show whether it is better or worse for sarcoma. Your oncologist took a lot of liberty here... The cardiotoxicity could actually have been worse with doxorubicin.

Good luck with your tests!


#3

Elodie, thank you for your response. Part of my concern is that the Omc Dr did REALLY take liberties in my treatment and didn’t follow the suggestions and agreed upon treatment by giving me the Pirirubicin instead of the Doxo. I’m thinking “you’re going to put me thru chemo & NOT give me the agreed upon and usual cocktail”? It makes one angry. I believe he just misread the cocktail protocol. Thank you for all you do!


#4

My tests came back great! Thx!


#5

Good to hear some good news!


#6

Im not sure how to answer this, but ill offer that I was told from the only ss at stanford (and my husband was also sent through the tumor board so it was overseen by everyone) that SS is more sensitive to the Ifos so feel good about that part...

We were told, see SS specialist... and go to a higher volume facility, and even there, at stanford mistakes were made during his treatment that almost cost my husband his life, so don't beat yourself up for switching... keep your records, and screw that doctor, you should of been told, every visit i asked for blood print outs being proactive in your medical is a must :) god bless you... Gina