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Old 03-18-2006, 09:03 AM   #21
Mar
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Exclamation Its Ok To Admit At This Web Site That Sometimes Side Effects Are Long Term And Life A

I sometimes feel so amazed, astonished, and down right disbelieving when all I read are when people write about Taxotere's side effects on this web site and they sound like story book outcomes. All I read here are that the side effects are temporary and/or mild and everything is rosey in a few months.
For me, and many more,Taxotere caused such long term, life altering problems that have NOT gone away or decreased in severity.

I suffer from SEVERE Neuropathy pain and muscle weakness in my legs, arms, and groin area that some days require high powered pain medication just to bear it. I am blessed though to have a wonderful husband who has been with me every step of this journey, along with my daughter, son in law, and three grandkids. That is so important. In addition, I have personally met 10 other women and two men (in the last year alone) who also have SEVERE and LONG TERM side effects from taking Taxotere. NOT EVERYONE escapes permanant damage from this drug or from one of the others now given.

It would be WRONG to mislead people into believing if they suffer the way I do that they are alone having this happen to them. It is also WRONG to suggest that everyone goes on as if taking a toxic, sometimes deadly chemo drug is not without its POSSIBLE long term problems. The secret is to read about all the possible side effects and be watchful as you take the drug, any drug. IF Taxotere,or any of the other chemo drugs start being too toxic to your body, there are other drugs they can switch you to before it damages your body before it is too late. Some of us are slow to empty these drugs from our bodies and some of our bodies can't tolerate a particular drug. Don't let near 100% rosey messages lull you into believing nothing but great outcome happen from taking Taxotere or any of the other chemo drugs. Don't be afraid either, but don't be an "unthinking" chemo patient. I actually met people while taking chemo who didn't know what drugs they were taking or any of their possible side effects. They said they were too afraid and just didn't want to know. I knew, but still ended up in the shape I am in. My severe side effects didn't show up until the end of my treatment. Thanks for letting me voice my concern at only reading rosey, no long term side effects from taking chemo, at this website. It just isn't so in many cases. Mar

Last edited by Mar; 03-18-2006 at 09:56 AM..
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Old 03-23-2006, 02:47 PM   #22
Andrea Barnett Budin
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I'm With You, Mar!

I was on Taxotere from Sept '98 through to the end of May '99 (when my BC metastasized to the liver). Initially I had a radical mastectomy and 4 Adriamycin and 8 CMF. I felt more and more fluish, weak and wobbly, shaky and sapped with each treatment, but fared well overall. I was told I'd be back to normal in a few months. I wondered what was wrong with me, when I continued to feel the side effects after finishing my protocol. I friend with leukemia told me not to listen to the doc. That it could take years. Convinced I was sane and not an oddball, it did indeed take years. Then came my recurrance. HER-2 was in clinical trials in '98. I asked to be tested, after I asked for the liver (abdomenal) sono, which called for a CT and then a liver biopsy. My liver enzymes were very slightly elevated w/every 3 month blood tests. The docs kept saying not to worry. I questioned the #s all the same. And finally I asked for the sono. Taxotere was the most aggressive tool in the med prof arsenal, my favorite onc told me. He said I had a highly aggressive form of BC (4th stage invasive lobular, not ductal, carcinoma w/ 2 out of 18 lymph nodes involved from the outset). I chose the harder road, knowing it was my best shot. I got shingles after the first 2 treatments. Icaught it the moment the first itchy bug-bite-looking raised red blotch appeared on my belly, went to the doc, got put right on the drug to counter it. I spent 10 days in hell, w/calamine lotion, the pills and some additional herbal supplements I read about in my Nutritional Healing book, and then was good to go. No chemo when you've got shingles. I was determined to get back on the chemo. I expected the "freight train" drug to be tough, read all the side effects and tried not to allow the fear of them to predict my course. Still, I had almost every side effect listed X 10. I went into remission, getting 3 different radiologists to read my scans and finding that the concensus was that what they were looking at was no longer multiple tumors in my liver, but the dead remains of tumors, cyst-like, filled w/fluid. I was in cautious remission. I remain so. AND YES, I still have the neuropathy thing going and the deep pain in my legs and sometimes in my arms on bad days. I have an oncological nutritional expert in Manhattan who recommends mega doses of a batch of immune boosters, healthy heart boosters, anti cancer herbs and energy boosters. I don't know where I'd be without Dr. Mitchell Gaynor and my crazy huge list of vitamins+ that I live on. I believe they keep me pretty straight. I have stopped my pain meds, finally. I have developed a bit of a swallowing problem and an IBS (Irritable Bowel) since Taxotere. Dr. G. gives me stuff for that that has been a Godsend. Mar, tell me what your experience has been, long term side effects and all. I am delighted to have found a cohort who really gets it. I am sending you, and all who read this, love and healing energy. Stay strong.

ANDI
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Old 03-23-2006, 02:49 PM   #23
Andrea Barnett Budin
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How Are You Leonardo?

I've lost your email address but think of you. I pray you are doing well and your mom is STABLE and happy. Please let me hear from you.

ANDREA
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Old 03-02-2007, 01:18 PM   #24
Miriam
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Her-2

I have been taking Herceptin for nine months now. With three more months to go. Started on it about a year after Chemo and radiation treatment. I take it every week. Takes about an hours from start to finish. Very easy treatment. Once a week works better in my opinion than a larger dosage every three weeks. No sinus problems either. The Famera give me more trouble than the Herceptin. One big recommendation for any cancer treatments. Get a port.
I wish I had one when I started chemo treatment. Doctors should insist on it.
I was give a choice. Made the wrong choice. Have learned a lot since then.
Herceptin is no brainer. Take it.

Miriam
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