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October 25, 2012 at 9:31 am #20708SMLinkParticipant
Hi its Shelley . Only been on one other time but I am in need some info if anyone can help.
Wanted to get feedback and give my personal update.
Have active mets in lung and liver and brain. Started IPI with Temodar ( 2 rounds / 6 weeks ago ) unfortunatly had loss of motor skills on my right side that landed me in the hospoital for a few days. They did an MRI of brain that showed some Edema which was causing my symptoms… luckily with steriods /i’m back to normal there. They scanned abdomen and it still showed growth in liver and lung , therefore the assumption is that IPI is NOTworking for me .
😡. They immediately started whole head radition with Temodar for 14 days… which I am almost done …hoooray Handling it all in stride ….besides my hair loss a Bit more traumatic than I thought It would be . ❗
So no more IPI . but in a few weeks they are talking of a combination of 3 chemo drugs(CVT infusion) I have not read up much and would love any feedback anyone may have.
Staying close to my faith always.October 25, 2012 at 11:55 am #57118Catherine PooleKeymaster
Hi Shelley, sorry to hear all that you have been going through. Your attiude is really terrific! I have not heard of CVT infusion, could they be talking biochemo? Where are you going for therapy? Tell us more..October 25, 2012 at 4:38 pm #57119AnonymousGuest Shelly:
I’m also really sorry you have to go through this terrible disease too. I hate it.
CVT stands for Cisplatin Vinblastine Temodar. It’s a strong chemo due to the Cisplatin which is a “platinum” chemo. As I understand it, the vinblastine makes it a bit less toxic to healthy tissue. Temodar, what you took already, is basically oral decarbozine a standard chemo for melanoma. CVT can be given in “fractionated” doses (25-30% strength) over an extended session(5 days instead of one day). This makes it a lot easier to tolerate and you get more of it over a 5 day session compared to a larger, single day dose. Having a moderate dose of the stuff in your system over the extended session is suppose to make it more effective because it then penetrates into more of the cancer cells and disrupting the DNA. The cell then dies during cell division. At least that’s my understanding of it.
I don’t understand why they stopped the IPI after only two infusions. That seems way early to make the call it’s not working since it’s not unusual to see the disease progress for sometime even after the 4th infusion.
I hope this helps, keep your faith strong and believe He is always with you.
JeffOctober 29, 2012 at 3:18 am #57120SMLinkParticipant
I live in Indianapolis Indiana and recieving my treatment here. My onco has been working with an Md at MD Anderson for recommendations for my treatment.
Yes I guess I should really question why they believe the IPI not working bc I have also read how IPI takes time to boost Immune system. I think since I was in the ER and they did the scan to see what was going on it just threw up a RED flag.
Thank you Jeff for the great info, I greatly appreciate it and will go back to my MD with some more questions.
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