On 1/13/2006 Sedonalady wrote:
Dear Vanilla Queen, Do you go to the CTCA? Dr. Williams is my Dr. there. They started giving me decadron I.V. prior to the Doxil on my 4th treatment--sorry, I don't know the exact dosage, I will find out next week. Yes, the rash is quite common, as a matter of fact it is discussed in the booklet that the drug company has made up about it. They call it PPE or Plantar(feet)/Palmar(hands) erythmatosis. I am very surprised that your MD does not know this. After 6 Treatments of Doxil, there is still some cancer left in my abdomen. I need maybe 2 or 3 more treatments. The "rash" (I use quotes because in some places it looks like a radiation burn!) started to be very problematical after my 3rd treatment. On the 4th, they gave me the Decadron IV which did help the rash, but it didn't take it away completely. Then other problems occurred--the Decadron wreaked havoc on my stomach and esophagus, so now I have esophageal erosions. I have to take Protonix and Zantac as long as I'm getting the Decadron. Even with all this, its still better than having the cancer or going on taxol (at least I have my hair and my CBCs are always good, no weight loss, no extreme fatigue, no retching my guts out.) People look at me and say I don't look like I have cancer (whatever that means!) Doxil is working for me. I had a PET/CT scan and showed the cancer spots were greatly reduced. I have learned many things. Most docs gauge their manner of treatment by a CA-125 test, which at best is highly unreliable. When I had a grapefruit-sized tumor in my ovary, my CA-125 was 6. It now hovers around 200. The plain old CT scans that they did on me post-op and pre-Doxil treatment were all "normal", that is no cancer (obviously wrong). A plain CT scan shows growths that are at least 1 centimeter. The PET/CT shows up growths that are 1 millimeter, or 100 times smaller. It is state-of-the-art test and some insurance companies won't cover it, but it is the most reliable of all the tests, short of a surgical biopsy. I went to a seminar on the PET/CT and it was taught by a very knowledgeable radiology MD--very refreshing for this area! Back to the rash. I am still very careful. The red "glow" has gone away. I still use the DMSO cream (which I finally decided was the best thing) alternating with Lidex, a steroid cream and top it all off with Udderly Smooth. For the really rough, DRY spots, I use A & D ointment (you can get these both at Walgreens for $1.99) The DMSO is from the CTCA and it has to be refrigerated. I can now bring this home on the plane because it's cold enough outside. I live in AZ, which is a long ride from Chicago. I also wear the little white gloves most of the time. My hands are the worst, still turning that very deep red color for about 4-10 days after the Doxil treatment. It is now almost 4 weeks away since my last treatment. My doc put my next appointment out for 5 weeks on the 20th because she thinks I'm doing that much better. My husband has been just great about all this usually does the dishes and cooking. Getting your hands wet makes them worse, as you must know. You can use latex gloves for this but if you leave them on too long, they can be a problem. All things considered, Doxil is no where near as bad as some of the other chemos and definitely better than having the cancer! I watched my neice and sister die of cancer and they were both on a Platinum + other chemos, one had lung cancer (did not smoke) and the other had a very aggressive type of ovarian cancer (she was on taxol too.) Well, I hope that helps. I had a bout of insomnia tonight and there was your message! Must have been divinely inspired. If you have any other questions, please ask away! Many blessings to you, Kathleen PS: The drug co. is Ortho Biotech, website www.Doxil.com, or call 1-800-553-3851. And the CTCA is wonderful!!!!!!!!!!!!! Blessings again!
Kathleen,
I was so inspired reading your posting today. I started Doxil 6 days ago and must say I have had some weird side effects since then. Diagosed with Stage 3c Ovarian in 12/2005 and recurrence in 4/2007 I am platinum resistant. I had the chemo resitance testing done and they said Doxil and Taxol would be good options for me. Taxol is NOT a good choice for me because of the toxicity - it made me feel horrible the first time. Anyway, back to Doxil - I have had discomfort in my chest - no hand or foot thing yet. Did you experience discomfort or a weird feeling in your chest, and how long after you started Doxil did your hand foot issues begin?
On an aside, I contemplated going to CTCA because I loved the fact that they treated this horrible disease from a holistic approach. After much prayer, we decided to stay local, but I see a naturopath, have totally changed my diet and am working on the mind/emotion part of dealing with this. I think it was the right decision for us but am so happy to know you were so pleased with CTCA. I do believe we can win the battle with this disease if we give our bodies the right tools.
I pray you are doing well.
In His Mercy,
Karen