Anti-Cancer Meds

marysun · July 2004

Hello all. I am wrestling with the side effects of first Tamoxifen and second Femara. I am 51 years old, had my only child at 35, nursed her, and am now menopausal since Dec 02 (chemo) I was dx in Aug 2002 with invasive ductal carcinoma with microscopic cancer cells in 2 lymph nodes, remaining 19 nodes were clear. Tumor was 2.7cm, clear margins, ER/PR+, Her2neu-. My treatment was fine needle biopsy, surgery for tumor removal, lumpectomy, axilla surgery, 4 rounds of A/C, 35 radiations which I finished in May of 03. I started tamoxifen june 03 but made the personal decision to discontinue the drug in December. The drs hit the roof and said take the Femara which I have since Feb. I have gained 30 pounds in less than a year ( seems like the same amount of time I have been taking the cancer drugs!) In addition, my bone density test came back showing a 2% loss in less than 3 yrs.
I opted to not take any of the cancer drugs after reviewing my records from the surgeries and subsequent follow up visits to the drs. Also the latest news saying that needle biopsies may spread the cancer cells to the lymph nodes is a concern of mine since the nodal surgery was done because of the microscopic cells and was subsequently tagged as no nodal involvement with 21 nodes (all they took) as cancer free.
So, in view of those factors and the loss of quality of life while on the drugs -- with the femara I was debilitated with joint pain and fluid retention; with the tamoxifen I was sopping wet all the time and gaining weight -- I am opting out of the drug treatment. I wondered if there were any other survivors who have had aggressive cancer treatment and then decided not to take the drugs. I was told by 3 drs that my risk of the cancer recurring is no greater than before I had cancer.
I just feel that prolonging a life is great, but that I feel better if not taking the drugs and isn't that the final goal -- to feel better? If I were at greater risk, of course I would follow through with the drug therapy. As a result of taking the femara, I am now on fosamex and vioxx for the osteo and joint pain. We also tried zoloft and lexapro but I opted out of those therapies as well (I couldn't take the "flat line" feeling).
At any rate, I welcome feedback without tirades. As in anything in life, the comfort factor is always in play. I am a lucky cancer survivor and when I read some of your stories, I am humbled. I use this site to calm my fears and cheer and cry with all of you.

inkblot · July 2004

Hi marysun:

Was just replying to your post and the strangest thing happened...the screen suddenly returned to the start page! Darn. I've no idea where, in cyberspace, my incomplete reply may have gone!

Anyway, I applaud your decision. No tirades here.

Your story is similar to my own. I also had my only child at age 35 and nursed. I'm also 5l. My tumor was smaller at 1 cm and I had lumpectomy w/Sentinel Node Dissection. I had 7 microcells in one of 3 nodes taken, which was my only encouragement for chemo. Prior to that little discovery, it looked like only rads for me.
I was hormone neg. but Her2/neu positive. So, Tamox. was not a consideration. I went menopausal during chemo which was 3 years ago. I had 37 rads, post chemo.

I have long questioned the wisdom and validity of docs placing every hormone positive woman onto Aromatase Inhibitors.

We are our own best advocates and must always make the final decisions about treatment, no treatment, limited treatment, including complementary/alternative meds, as well. It's our body and our choice. Nothing else makes sense.

You are obviously well informed about and understand your path report. This is such an important tool in helping us to make our best decisions.

All drugs have the risk of side effects and so does Tamoxifen. There is no such thing as an innocuous drug. All drugs deserve respect and much thoughtful consideration and research before taking them, even moreso when the absolute benefit isn't clear. Some women have had severe side effects which prevented their continuing to take the drug. This tells us something. In my own mind, the absolute benefit of all hormone positive women routinely taking Tamox. is highly questionable. It clearly isn't a wonder drug and each woman must decide for herself if the potential side effects/damage are worth it, in correlation to potential benefit. A few women on this site have experienced recurrence/mets while on Tamox and have said that Tamox. acutally caused their relapse. It's a lot to think about.

Quality of life does matter, when we get right down to it. And like you said, if you felt that you were in a class that would benefit from the drug, you'd take it. Your decision sounds informed and well thought out and that's all we can ask of ourselves, really.

Trusting our docs is good but blind trust can be dangerous. It is we who live with side effects, complications, debilitations, etc., so it must be our choice as to who, what, when, where and how much, if any at all, regarding active treatment modalities, as well as preventive treatments. Once we make our choices, we should waste no time looking back. Forward is our focus.

Hoping the Fosamax restores that 2 percent bone loss you experienced. Meanwhile, treasure each day, confident that you've made the best choices for yourself and get out there and enjoy! Those extra pounds should start to come off as well and you'll be feeling so much more "YOU"!

Love, light and laughter,
Ink

hummingbyrd · July 2004

inkblot said:
Hi marysun:

Was just replying to your post and the strangest thing happened...the screen suddenly returned to the start page! Darn. I've no idea where, in cyberspace, my incomplete reply may have gone!

Anyway, I applaud your decision. No tirades here.

Your story is similar to my own. I also had my only child at age 35 and nursed. I'm also 5l. My tumor was smaller at 1 cm and I had lumpectomy w/Sentinel Node Dissection. I had 7 microcells in one of 3 nodes taken, which was my only encouragement for chemo. Prior to that little discovery, it looked like only rads for me.
I was hormone neg. but Her2/neu positive. So, Tamox. was not a consideration. I went menopausal during chemo which was 3 years ago. I had 37 rads, post chemo.

I have long questioned the wisdom and validity of docs placing every hormone positive woman onto Aromatase Inhibitors.

We are our own best advocates and must always make the final decisions about treatment, no treatment, limited treatment, including complementary/alternative meds, as well. It's our body and our choice. Nothing else makes sense.

You are obviously well informed about and understand your path report. This is such an important tool in helping us to make our best decisions.

All drugs have the risk of side effects and so does Tamoxifen. There is no such thing as an innocuous drug. All drugs deserve respect and much thoughtful consideration and research before taking them, even moreso when the absolute benefit isn't clear. Some women have had severe side effects which prevented their continuing to take the drug. This tells us something. In my own mind, the absolute benefit of all hormone positive women routinely taking Tamox. is highly questionable. It clearly isn't a wonder drug and each woman must decide for herself if the potential side effects/damage are worth it, in correlation to potential benefit. A few women on this site have experienced recurrence/mets while on Tamox and have said that Tamox. acutally caused their relapse. It's a lot to think about.

Quality of life does matter, when we get right down to it. And like you said, if you felt that you were in a class that would benefit from the drug, you'd take it. Your decision sounds informed and well thought out and that's all we can ask of ourselves, really.

Trusting our docs is good but blind trust can be dangerous. It is we who live with side effects, complications, debilitations, etc., so it must be our choice as to who, what, when, where and how much, if any at all, regarding active treatment modalities, as well as preventive treatments. Once we make our choices, we should waste no time looking back. Forward is our focus.

Hoping the Fosamax restores that 2 percent bone loss you experienced. Meanwhile, treasure each day, confident that you've made the best choices for yourself and get out there and enjoy! Those extra pounds should start to come off as well and you'll be feeling so much more "YOU"!

Love, light and laughter,
Ink

No tirades here either! I took chemo, almost died from it, threatened to quit, completed it and refuse to go back on it now.
Despite chemo I had bone mets anyway, did undergo radiation for them. Had been on herceptin and zometa since 8/01 but stopped that after allergic reaction 5/04.
So...I'm stage 4 x's 3 years "look real good" according to my onc "like you don't even have cancer" despite tumor markers on rise since 12/01, "look especially good for a stage 4 patient especially considering you have had so little chemo."
Gee doc...maybe it's BECAUSE I haven't taken the chemo! But I know it's by the grace of God, but whose to say He didn't give me the sense to stay away from chemo?
Anyway stopped my aromasin too, to expensive, had hys so wonder what estrogen receptors are left anyway, some I know but can't be that many. My current focus is diet, water, exercise, rest and prayer (meditation for some).
I have a lymph node swollen under my jaw. Gets bigger at night, when immune system works the most, and shrinks during the day. I figure "so I got a swollen node, yep something's going on, but my body is cleaning it out." That's about as scientific as the rest of the med community and AT LEAST for NOW I still feel good.
So BRAVO to you and anybody else who decides to think for themselves. I hate it when we all seem to be like a bunch of sheep being lead to slaughter!
hummer

bunnie · July 2004

Hi it is so funny that you posted this message.I had my last chemo toay and then on the 22 nd of this month going to do test to see if cancer is finally in remission or not if it is doc is thinking about doing some kind of prevnative medicen to make sure cancer doesnt return and iam trying to decide if i want to do it or not i would probally be on chemo every six to eight weeks and it would probally be gemzar.havent quite made up my mind yet.I am with you thought if my quality of life is better with out the chemo evne in there is a big chance of it coming back then i would rather have a few years of quality life than not so quality.I wish you the best of luck.I have not reached a one year survivor mark yet hoping to do so this year in Dec.Bunnie

jeancmici · July 2004

hummingbyrd said:
No tirades here either! I took chemo, almost died from it, threatened to quit, completed it and refuse to go back on it now.
Despite chemo I had bone mets anyway, did undergo radiation for them. Had been on herceptin and zometa since 8/01 but stopped that after allergic reaction 5/04.
So...I'm stage 4 x's 3 years "look real good" according to my onc "like you don't even have cancer" despite tumor markers on rise since 12/01, "look especially good for a stage 4 patient especially considering you have had so little chemo."
Gee doc...maybe it's BECAUSE I haven't taken the chemo! But I know it's by the grace of God, but whose to say He didn't give me the sense to stay away from chemo?
Anyway stopped my aromasin too, to expensive, had hys so wonder what estrogen receptors are left anyway, some I know but can't be that many. My current focus is diet, water, exercise, rest and prayer (meditation for some).
I have a lymph node swollen under my jaw. Gets bigger at night, when immune system works the most, and shrinks during the day. I figure "so I got a swollen node, yep something's going on, but my body is cleaning it out." That's about as scientific as the rest of the med community and AT LEAST for NOW I still feel good.
So BRAVO to you and anybody else who decides to think for themselves. I hate it when we all seem to be like a bunch of sheep being lead to slaughter!
hummer

Hummer,
Which gave you the allergic reaction - zometa or herceptin. I got zometa Thursday - felt good when I went in and came out - but gradually pain got worse and I can barely move tonight - out comes the walker again. I know it must be the zometa because I've had navelbine alone - no herceptin now - only thing different is the zometa.

I went thru terrible pain last fall when the bone mets were newly diagnoses - and growing I might add, and history repeats itself. Something is going on - not a happy camper at all!!!!!

Love,
Jean

inkblot · July 2004

hummingbyrd said:
No tirades here either! I took chemo, almost died from it, threatened to quit, completed it and refuse to go back on it now.
Despite chemo I had bone mets anyway, did undergo radiation for them. Had been on herceptin and zometa since 8/01 but stopped that after allergic reaction 5/04.
So...I'm stage 4 x's 3 years "look real good" according to my onc "like you don't even have cancer" despite tumor markers on rise since 12/01, "look especially good for a stage 4 patient especially considering you have had so little chemo."
Gee doc...maybe it's BECAUSE I haven't taken the chemo! But I know it's by the grace of God, but whose to say He didn't give me the sense to stay away from chemo?
Anyway stopped my aromasin too, to expensive, had hys so wonder what estrogen receptors are left anyway, some I know but can't be that many. My current focus is diet, water, exercise, rest and prayer (meditation for some).
I have a lymph node swollen under my jaw. Gets bigger at night, when immune system works the most, and shrinks during the day. I figure "so I got a swollen node, yep something's going on, but my body is cleaning it out." That's about as scientific as the rest of the med community and AT LEAST for NOW I still feel good.
So BRAVO to you and anybody else who decides to think for themselves. I hate it when we all seem to be like a bunch of sheep being lead to slaughter!
hummer

Hi Hum:

You are SO positive and strong. You never cease to amaze me. Of course, I so love your independence. Your sharing here is great encouragement for other's to exercise independent thought and action and to feel more comfortable making their own decisions.

Hoping that lymph nodes ceases swelling soon. Meaning: it's done its job effectively. Who knows, it could be that it's just trying to rid your body of an infection/virus/bacteria of some sort. Just as an idea: Find some quality acidophilus (which you're probably already taking) which also contains COLOSTRUM. Great for strengthening the immume system at times when it may benefit from a little boost.

Love, light and laughter,
Ink

marysun · July 2004

bunnie said:
Hi it is so funny that you posted this message.I had my last chemo toay and then on the 22 nd of this month going to do test to see if cancer is finally in remission or not if it is doc is thinking about doing some kind of prevnative medicen to make sure cancer doesnt return and iam trying to decide if i want to do it or not i would probally be on chemo every six to eight weeks and it would probally be gemzar.havent quite made up my mind yet.I am with you thought if my quality of life is better with out the chemo evne in there is a big chance of it coming back then i would rather have a few years of quality life than not so quality.I wish you the best of luck.I have not reached a one year survivor mark yet hoping to do so this year in Dec.Bunnie

Thanks for your wonderful support on this issue. I see the onc tuesday and will let you know how he reacts. My friends tell me that since i quit the meds one month ago that "mary is back'! :-}

Gale7 · July 2004

Hi Marysun: I agree with you that Femara is not a very good anti-cancer med but it is the best we have right now. I have been on this a few months and am recovering from Stage I tumor, no lymph node involvement, surgery and radiaiton.

I want to try to stay on the Femara for the 5 years they recommend. I agree with you that it definitely is debilitating. I have severe arithric pain although my doctor assures me it is not going to bring on more real arthritis. I seem to be worn out all the time and on some days it is an effort to get out of bed. I do not believe that I am depressed as life is going well. I eat right and exercize everyday and do have love in my life which helps. I am 63 years old. There you have the profile.

I just wanted you to know that I have chosen to try to stay on the medication. My doctor says it is my choice but that it will give me a much better chance of not having a recurrence.

I know all of this is a blow to any of us as we were going along and this health train hit hard. I also feel that I was very healthy before and always maintained a low weight, ate right, and exercized. So go figure!

Try to talk to as many doctors as possible and to discern your personality type as to whether you can keep taking an aromatase inhibitor. Again, these are not very great meds but all we have right now and the stats are great with this so far. Who knows?

Please let me know your profile and good luck!

Gale 7

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