Patupilone Research study participants/

[Mags711]

I have recurrent oc and will start my next level of chemo next week.  I have chosen to participate in a research study for patupilone. I will receive either patupilone or doxil. I would like to hear from anyone who has experience with with either drug, side effects, etc.  

I was diagnosed July 2007 with stage 3 epitheleal oc.  I had eight rounds of taxol/carbo chemo, two surgeries, one colostomy and now have two hernias that will have to wait to be fixed until we can get the oc under control.  Please, anyone, help me keep my hope for survival alive.

[Mags711]

Round three is over and I am feeling good.  I had a very physically exhausting day.  I was up at 4am, off to the airport, St Louis for chemo and home by 6:45pm.  I also had some very emotional conversations with family and this added to the mix.  I cried in my hubby's arms for two hours on Wednesday night.

I am feeling pretty good, no nausea this time, and the best news of all is that my CA125 went DOWN!  The nurse had told me that I would continue to see a rise in the number until after the third infusion, but we saw one already! I really needed that news to pick me up.  It is heartening to know that the chemo is working for me!
Love to all,
Maggie

[Mags711]

Just wanted to send you all an update regarding the patupilone.  Thanks so much for all the kind words and energy sent my way.

I head to St. Louis/Barnes Jewish tomorrow for my appt and 2nd chemo treatment.  The first round went well.  Not knowing what to expect is always hard, so now after one treatment I feel armed and ready to go.  I had four mornings of diarrhea starting the eight day after infusion.  I had low level nausea the first three or four days which resulted in general ambivilence regarding food.  I had been advised to stop eating anything which would encourage the diarrhea and so mostly my diet consists of fruits and veggies.  And I am even careful with those.  

I have also started serious therapy with a psychiatrist who practices what she calls 'holistic psychiatry'.  We work with visualization, meditation and biofeedback to help monitor my overall help.  I am also reading an excellent book called "Cancer as a Turning Point" by Lawrence LeShan.  I do believe the mind has the power to help heal the body and at this point I am willing to try anything (that won't cause any harm) to help my body.  I believe that modern medicine and alternative philosophies can meet and work together.  In that vein, my husband, Richie, and I are going to Sloan Kettering in NYC sometime in the next month or two for a second opinion.  I owe it to myself and my friends and family to work as hard as I can to find a way to health again.  At Sloan, there is also a holistic/naturopathic approach to healing which is very attractive to me.  

So, as I will always hope for the 'magic bullet' to cure this cancer, I am going to do whatever I can to help the bullet find it's way to me.  Wish me good energy tomorrow and as always my thoughts are will all my fellow fighters out there....

Much love,
Maggie

[Mags711]

I was approved for the patupilone study.  I recieved my first chemo on Thursday.  I was told to expect the side effects anytime between 24 hours after infusion, but would more likely see the effects 7-9 days after infusion.  I do feel a bit tired, maybe a little nausea.  This could also be the horrible affects of the allergies I am suffering.  The cottonwoods are going crazy here and the mold count is up.  When I get past the watery, itchy eyes, sneezing and running nose, I actually feel pretty good.

I will keep everyone up to date on the side effects of this drug.  It feels good to be home.  And I still feel great hope for my future.

Much love,
Maggie

[alanpvegas]

Yes, my mom was on this during Phase II clinical trials, I see now it's in Phase III.  Novartis is the lab that is developing this drug.  Essentially, it's another microtubulin stabalizing drug (same as how Taxol works, for example).  Cells are made up of these microtubulin strands and cancer (and regular cells) split then and grow.  When you stabalize them, they can't grow and thus die off.

Does it work...um...hard to say.  I'm trying to remember back to my mom's CA-125 counts during it, and I'd say if anything it made her somewhat stable, however she developed colitis in the intestines and by the time she was ready to go back on the drug her CA-125 obviouslly increased so they considered that 'progression' and took her off the trial.

You do get diahrhea from it, and if I can recall that is the most serious side effect?  Sorry, it's been over a year now.  

I can see Doxil being as effective...remember everyone is different in regards to how their cancer will react to a chemo regemin!  So even if you get Doxil, that's a good thing!

[msjazz]

I just had my second dose of doxil 2 weeks ago. I know there are ladies on here that did well with it, but it is really doing a number on my mouth and tummy. I already had acid reflux before cancer, so that is probably why. I am going to call my dr. next week and see if there is something we can do for my side effects. I do take Nexium and use mouth rinses. Do use the ice packs on hands and feet during infusion. My clinic has them there, check and see if they will be available for you. Best wishes.

[survivor_susie]

Hi,
I combined traditional and nontraditional methods when I went through chemo and radiation. Try doing a search for "Glutamine and chemo."  An RN suggests a supplement called Glutamine.  I took it during chemo for fatigue and mouth sores.  It's amazing.  It is the natural protein manufactured in the intestines which chemo kills.  I used it as a mouthwash for one day.  The mouth sores were completely gone.

And, hey! I know of at least three people who are at stage 4 with various cancers.  One woman has had stage 4 breast cancer for 9 (nine!) years. She works full time.  Two others have been alive with their cancers for close to 7 years.  With new meds, some cancers are becoming more chronic rather than life-threatening; they recur from time to time, you treat them, and get on with your life!  

Please know that you have lots of support and love on this forum.  Keep us informed, and let us help you.  We've all been there.

You are much stronger than you think.
Kathy

[momofsandj]

Deandra hit the nail on the head -- I'm on doxil too after 12 rounds of carbo/taxol (6 five years ago and 6 last year) -- the only thing I would add to her post is that a mouthwas Biotene (over the counter) helps soothe the mouth sores --- if you end up on Doxil, go to Doxil.com and call the support line -- they will send you a goodie bag of stuff if your doctor doesn't have it and that has some really good cream and ice packs.
Good luck and hang in there -- there are so many things out there you can't give up ......
Jeanne

[Brownie3321]

Hey there - WOW, our stories are so similar. I am on Doxil now. It's not as bad as carbo/Taxol and Cisplat, but it's not a trip to Baskin Robbins either. Here's the deal, the first dose I was fine - just more tired. The 2nd dose has started to effect my mouth. Doxil causes hand/foot syndrome where you will experience painful heat rashes and mouth sores. I have yet to experience any rashes on my hands/feet, but my mouth is starting to feel irritated. The best thing to combat this is to have icepacks on your hands and feet the whole time the Doxil is being administered and suck on ice chips! The cold will keep the medicine from going into your hands/feet and mouth. I did all of this the 1st treatment which I did not experience any of the side effects. The 2nd treatment I went to sleep so I wasn't sucking on ice which now I'm starting to feel the mouth sores. The only other side effect is fatigue and a sensitivity to spicy foods and/or heat of any kind. NO HOT SHOWERS!! Good luck to you, Deandra

[marie3B]

I have not heard of patupilone, but will look into it. Your hope to survive is not only going to stay alive, it will stay alive and kicking hard!!  Marie

[Conquerer]

You must stay strong.  Many women stay on a maintenance drug.  I don't know much about doxil but there are many ladies here who will be able to help
hang in there