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Tamoxifen

jolock2004
  • By jolock2004
  • Posted December 15, 2008 at 8:04 am · 20 replies
  • In Recurrence
  • Shared with the public
0 Recommendations

I was diagonsed with my 3rd recurrence in Sept of this year. I was put on Navelbine for 9 cycles and then start Tamoxifen to try and keep me in remission longer(I was only off chemo 9 weeks when I filled with ascites) I can't take the Navelbine. I have never had such a nasty side effects from chemo ever. I can't eat and if I do eat it comes outs one way or another!!! I'm was 139 and now weight 99. The plan is to stop the navelbine although I only finished 4 cycles and start Tamoxifen at the beginnin of the year. Anyone out there with experience with Tamoxifen?? Did you have bad hot flashes or alot of weight gain?? How about nausea or hair loss?? Thanks in advance~~~Joanne

Explore topics in this discussion:

Exercise Cancer Taxol Surgery Avastin Breast cancer Ovarian cancer Pulmonary embolism Chemotherapy Cytoxan Liver cancer Evista

20 replies

momanderson920

The breast cancer crowd uses this alot I think. You might check out some of their website posters, too.

gpawelski

Sometimes high-dose Tamoxifen enhances the chemosensitivity of cancer cells. Chemosensitizers can enhance cellular chemosensitivity and reduce chemoresistance. Tamoxifen is a nonsteroidal antiestrogen that has been shown to reverse drug resistance in vitro in some cancers. Like all drugs, they have their percentages of side effects.

sbender3

sorry to hear you had such an experience with navelbene. i was put on it january 31 of 2008, and i just finished my 11th cycle, and i never had any real issues, and did not take any nausea meds. but i continue to have ascites, i have been drained 8 times this year, the last time, i went 10 weeks. i tried tamoxifen before we did the navelbene, and i ended up in the hospital with a bowel obstuction, from scar tissue, that resolved itsself, in januayr of this year. tamoxifen does work for some women, i guess it is 20%. we takes the odds we can get. god bless, and good luck.. sherry

kippychick

I was diagnosed with Ovarian Cancer approximately three and 1/2 years ago. I have been on just about every chemo treatment available. I have "persistant ovarian cancer", meaning no matter how many times I have surgery to take it out, it keeps coming back. None of the treatments has been effective in putting me into remission as of yet. One of the treatments I was on was "Tamoxifin". I caution you and implore you to educate yourself as much as possible on this particular treatment. Talk to as many professionals you can regarding the side effects. Research the internet on this chemotherapy treatment and its potential side effects. Tamoxifin has been successful in breast cancer treatment. I am not sure it's success rate with ovarian cancers. I do know that Tamoxifin caused several pulmonary embolisms with me. A pulmonary embolism is a blood clot in the lungs. This is normally fatal. I am a miracle to have survived two clots in my lungs. The second clot was formed after they inserted a device to stop blood clots from getting through to my heart and lungs. This treatment for me is potentially fatal. So please, again, I urge you to find out as much as you can regarding this chemo. If you have had problems with blood clots in the past, I would think you would not be a good candidate for Tamoxifin. Only you and qualified professionals should make this decision. Talk to your Gynecological Oncologist, your Pharmacist, get as many opinions as possible from your medical team as well as second opinions from Cancer Specialists outside of your ordinary team.

I am sorry that you are going through this. My prayers are with you to make the best decision possible and that you are in remission soon and that cancer will be a thing of the past for you. God bless, Kimberly

linden

Hi, sorry to hear of your problems, I was DX 12/2007, 8 rounds of carbo/taxtore which I completed end of June. First of August my CA125 went from 15 to 50, then up to 66. Started Tamoxifien Sept, CA125 to 67, then down to 50 and first of Dec. 37. The only side affect I have had is hot flashes and at night wet hot flashes. Blood clots and thining hair are also side effects. My Dr advised me to drink lots of water. I feel fortunated that so far it working for me.

Artemis

I have just stopped taking Tamoxifen after doing some research on it. It is carcinogenic! It can cause liver cancer, cataracts, blood clots and strokes. I am worried that this is poison. I asked my doctor if I could come off of it, and he said I could if I was worried. I am now on a vegan diet because it makes sense that what we eat can either hurt or help.

Georgi

Hi,
I was diagnosed with ovc in 5/2006, and have had 4 recurrences. One of the substances I used was Tamoxifan (with 1st recurrence) and it kept me cancer free for 9 months. I had absolutely NO side effects, and I was 69 at the time. I also had a history of 4 different leg blood clots ( in my 20-30's). Am currently on Avastin and Cytoxan and yes, I know the side effects....but what do I have to lose?

Artemis, just about every substance is "carcinogenic" in various doses, and what we eat now probably makes no difference what-so-ever in our ultimate outcome once a cancer has occurred....but if it makes you feel better, go for it!

Georgi

lme045

Georgi, I love your very honest remarks about "carcinogenics" and "what we now eat" following a cancer diagnosis. I was first diagnosed in 2004 with OC and had a recurrence in 2007, more surgery and chemo, but no remission. I am living with the cancer that remains, fairly well. The doc has me taking Tamoxifen and I'm not sure if it will actually help me or not, but it's worth a try, right? Like you said, AFTER the cancer is not the real time to suddenly "fix" our problem. While diet and exercise ARE important, the real time to ward off sickness was long ago BEFORE we got cancer. I eat as well as I can and exercise, but I still have cancer and always will most likely. I'm happy in life and just go with it. :) I wish all of you luck in fighting your cancers. Some people do go into permanent remission, and always HOPE must burn in all of us!! Linda

Artemis

There have been many cases of people "fixing" their cancer with their diet. That is logical. I am off of Tamoxifen for six weeks trying to determine if it does help me. If my CA125 goes down without taking Tamoxifen, I will stay off of it, and if it goes up dramatically, I will consider getting back on Tamoxifen.

JC1945

I, too, was put on tamoxifen when my CA125 passed 100 and there was no evidence of disease. It drove my # down to 20 in 6 months (which was Dec. 30, 2007). All through 2008, my CA rose 7 - 10 points a month and there was a small 1.1 cm spot on my liver found in June '08 and we just watched it. I stayed on tamoxifen until this January, 2009 when my CA once again passed 100 and the liver spot doubled in size and there was a couple tiny areas elsewhere. I am now on carbo/taxotere. According the the Onc. on another OVCA website, tamoxifen is a good drug to try especially if your are NED. It works for 6 months to 2 years. Even tho my # was going up, my Onc felt the tamoxifen was keeping things in check. Tamoxifen only works for 10% of OVCA pts., so I am glad for the 18 months I was on it. NO side effects at all.

Re: food .. I eat anything and everything. I know people who try so very hard to eat a perfect diet and they seem to fare the same as those who eat everything and anything. Maybe there's a happy middle. While on chemo, I eat red meat 5 out of 7 days to boost my red count. Better that than a shot or blood transfusion. The chemo appears to be working. After 1 tx, CA dropped in half. I am not changing anything.

Everyone does whatever the feel they must to get through the day.

Judy

Elaine1

Hi all

I'm about to begin Maintenance Therapy using one Tamoxifen pill per day at 20 mg. This, following completion of 6 sessions of Carbo / Gemzar which I tolerated very well, with no side effects at all, ( other than very thinned-out hair. ) More importantly, my small size tumors were significantly reduced. PET Scan was mostly good.

Like most, was DX'd in late 2004 with Stage 3C, OV, Grade 3 aggressive, with Optimal Debulking.. Had low dose Taxol Carbo, 6 treatments and went into almost 3 years of Firstline remission. Recurred in April 2008. ( LOL, for diversion, in 2007, I managed to get Stage 1, HER2 left breast Lumpectomy, Stage 1, Grade 2, also Aggressive. Had radiation and Targeted Herceptin treatment, now ok according to last digital Mammo.
I am one of those who always has low CA-125's, ranging from 3 to 10. Am also asymptomatic, rarely
get side effects other than a bit tired after the last 2 treaments, Now that I've recurred, it scares me, because I'm the last one to know what's medically happening! Only thing I do know is that my OVCA ER tissue test revealed a very high 78% Estrogen Receptor count...which explains the selection of Tamoxifen now, for my recurrence. With Firstline, I had been put on Evista (or Reloxafine)...a sister drug to Tamoxifen, but I had to stop because of really horrible, agonizing ankle cramps that would last at least 5-7 minutes, waking me up aw 2 AM. Did any of you experience that with Tamoxifen?

Enough about me...Hoping to hear from some of you.

Sending good thoughts to you all.
Elaine

At any rate, I am anxious to know more about your dosages, pills or IV and anything else that might be useful for me to know. ..I'm an information "Junkie"!

Artemis

Well, I am back on Tamoxifen because my CA125 went from 54 to 77 in the six weeks that I was off of it. I guess I have to learn that since I have cancer, I have to accept that I have to take drugs that are bad for me. <sigh>

vitaminC

I was diagnosed with Stage 3C Ovarian Cancer April 2009. I elected not to do chemo as the quality of my life is so much more important to me than the length of it. I have researched many alternative treatments and finally selected a course of high dose Vitamin C and K. These IV treatments have stopped the cancer in it's tracks as shown on my CA 125. We are now going into an agressive course of 12 treatments in 4 weeks to see if we can get it to back up. In addition, my oncologist has suggested tamoxifin as a companion piece as my tumors tested 38% for estrogen receptivity. Thanks so much to all of you for your candid responses.

Jacki123

How do you get a vitamin c & k treatment ?

Patricia123

I have a higly esrogen sensitive cancer and asked the onc aboug taking Tamoxifen for long terms. Have had carbo/taxol for nine treatments and am finishing 24 maintenance IV weekly taxols,,alot of treatment but am NED with good scans so far.

He says the estrogen sensitve test doesn't accurately predict response of tumor to Tamoxifen which seems odd to me but he said some respond well, otherd dont and even ones with low receptors are responsive.

I just read that once a metastasis occurs, the metastasis is different genetically from the original tumor and that might account for chemo resistance. That intrigued me and made me wonder if that is why we keep having to change chemos once the damn thing has spread.

Everything is such a crap shoot but from what I see most treatments for recurrence have about a 20 percent response rate if one has early recurrence. But additions of avastin and other drugs might raise those numbers significantly.

Arby

Can you give us any more info on your vit c--do you get infusions? Is it a clinical trial? Is it covered by insurance? Have you had any side effects?

My oncologist is going to start a program of vit c infusions? I'm hoping to start the infusions soon. I went to a presentation about high dose intravenous vit c infusions and it's effect on cancer and how it builds up your immune system to help fight the cancer.
I know that there's a clinical trial at Jefferson Hospital in Philadelphis, but it is to target lymphoma. The presenter of the Vit c talk said that when the results of the Jeff study are published that it will be earth shattering. Let's hope that it is and that it will be of some help to us as well!!

Jen457

I was on Tamox back in '95 after treatment for bc. I had the night sweats which gave me terrible leg cramps. I drank milk, ate bananas--nothing worked until I tried Gatorade. So just a thought if you are having the horrible leg cramps.

vitaminC

So the research on the IV Vitamin C and K treatments are by Jeannie Drisko from the University of Kansas. She gives her protocol to practitioners who ask for it. There is direct research on ovarian cancer with this treatment. I go to a naturapathic doctor in Boulder CO near my home. He thought he would be able to see results on my CA125. I couldn't even hope for that, BUT low and behold it worked! Good luck to you.

Arby

That's awesome and really hopeful. What were your CA125 numbers and how much did they go down? Someone from my oncologists practice was just at a conference in Kansas re: Vit C--it was probably your Jeannie Drisko presenting the info. I'm going to mention that name tomorrow at the onc office if I get the opportunity, just to see the reaction.

Cheryl4Teal

Well a good friend of mine got cramps in the legs by taking this. Try I know its yuk, but it worked , tonic water.Straight up. It worked , just hold your nose a drink a few sips. She swears on it.

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