My ovaries were removed on Oct. 7th, 2004, after I was diagnosed with Stage III ovarian cancer. I had 8 rounds of a combination of Taxol and Carboplaten that was completed on April 15, 2005. At the end of that time, my CA125 was 33. Last week another CA 125 read 254. My oncologist is starting me on DOXIL on Weds, Aug. 3rd. I would like to hear from anyone who has been treated with DOXIL, as to the side effects they experienced with this drug. The literature the doctor gave me to read prior to treatment is rather frightening, and this seems to be a much more toxic chemo than my first ones. Also, should I be considering consulting with a oncology gyn specialist, rather than my general oncologist?
Any replies will be greatly appreciated.
Hi,
I have had ovarian cancer for 10 years. I first had a TAH in 1995, but no chemo was needed because it was termed "borderline" serous tumor of low malignant potential. They left the omentum in. I went to a regular gynecologist. It recurred in March of this year and I had surgery in April. I had a very extensive sugery as it had spread throughout my abdomen. The surgical incision dehissed or opened and it took 2 months to heal, which was shortened by the use of a wound vac. This gave me lots of time to interview various oncologists.
To answer your questions:
YES! Absolutely go to a gyn-oncologist and no one else. There are tons of statitics on how ladies who go to gyn/oncs live longer.
About the Doxil, I just started treatment on Friday. I have had only very minimal nausea. No problems with hands and feet, but I'm on a ton of supplements and vitamins (I go to the Cancer Treatment Center) and I think these allay this problem.
The biggest problem I saw as both a nurse and a patient are the potential cardiac problems. I was told by both my oncologist and the people at OrthoBiotech that these side affects were more associated with an older version of Doxil, but they have to give the usual disclaimer because Doxil is related to Adriamycin and Doxibudicon (sp), which were the bad ones that caused cardiac issues.
I was told there was no hair loss and minimal bone marrow depression.
I think that most oncologists use "cookie cutter" mentality and give everyone the same "taxol-platinum" therapy for starter. I had an assay done and they were at the bottom of the list for effectiveness in treating my cancer. Doxil was at the top. I was told by the old oncologists that they never go by this test anyway, so why did they order it????
I hope that helps. I guess its not fair to assess Doxil, since I only have been on it for 4 days now. But so far, so good! I was wondering if the people who had the hand/foot problems, was this permanent? Were you on any extra dietary supplements?
Best wishes and blessings to you on your journey.
Kathleen Wilson
PS: Look into the Cancer Treatment Centers of America in Zion, Illinois. Its everything they say it is and more! Dr. Williams, the gyn/oncologist is wonderful.
Kathleen, thank you so very much for your response to my e-mail re DOXIL. I had my first treatment yesterday and was able to go in with a much lighter heart, thanks to you. The infusion went well, but I am starting to feel a little rocky today. However, if it doesn't get any worse, it is something I can certainly live with. My CA 125 level was up to 422.5 (from 254 ten days ago), so it's a very good thing that I started back on chemo. I wish I had been able to talk with you before I had the eight rounds of Taxol-Carboplatin. No wonder it didn't help me! Actually, it brought me down from a CA125 of 1282 to 33, but as soon as the chemo was finished, the cancer came right back. Hopefully for both of us, the DOXIL will work better. Per your advice, I asked my oncologist to refer me to a gyn-oncologist. He is referring me to the specialist that he has been consulting about my case, but he wants to keep involved himself. If DOXIL doesn't work for me, I am going to get in touch with CTCA and see how they might be able to help me. But I think I'll give the DOXIL a try first. I hope you are feeling o.k. since your first DOXIL treatment was last Friday. Hopefully, someone out there will reply to your question re hand/foot problems. I would be very interested in learning more about that side effect also. Thank you again for your concern and encouragement. May God be with you through these tough times and always!
Ginny B.
Thank you for your kind words and thoughful prayers! I am still doing very well and now its been six days since treatment. I'm actually feeling better than I did at first. Still no sign of hand/foot disease, only some slight nausea which was relieved by Ginger Caps and some fatigue. My Hct was down at 36.8, but that wasn't too bad. I sincerely hope the DOXIL treatment works well for you. There are some other encouraging words about it from Karen. Read on!
Many blessings,
Kathleen
Hi, Ginny,
Glad to find this discussion. I was treated with Doxil three times before the side effects hit me, but it wasn't my hands or my feet, it was my mouth. I developed a sore inside my mouth at my lower lip and also inside my cheek where my teeth rubbed. I had trouble eating everything. I found I could eat lukewarm soup that didn't have anything in it that I had to chew (soft things like noodles, rice and well cooked veggies were ok.) Also anything that was acidic like tomatoes (tomato sauce), citrus fruit, cottage cheese, etc. was out.
I don't want to scare you, but until you know how the Doxil is going to effect you, don't eat or drink anything really hot (temperature-wise or spicy) that might cause a sore in your mouth because it won't heal until after your chemo is over.
Good luck.
I've had three Doxil treatments. This is my second-line chemo. I had debulking surgery for stage 4 ovarian cancer a year ago, then carboplatin/taxol for 6 treatments. My cancer then went into remission for 5 months. However, my CA125 started to go up in May, and a CT scan showed the cancer was growing again. After quite a bit of discussion with my gyn/oncologist, I started on Doxil. I had almost no side effects after the first 2 treatments, but after the 3rd I experienced burning and blistering in my feet, mouth sores, and now fatigue. The good news, however, is that the cancer is really responding to the Doxil--my CA 125 has gone from 770 to 91, and my CT scan showed the cancer to now be what they term "non-measurable." I'll have my 4th round next Monday, and I've been told that Doxil gets its best response after the 4th treatment. I also have to say that aside from the side effects mentioned above, I feel great!
My feeling about side effects is this: if I know the chemo is working on my cancer, I can tolerate just about anything!
Best of luck to everyone out there!
Barbara J.