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coffeepot

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Reply with quote  #1 
I need some help figuring out what to do.  I am 55.  I had been taking tamoxifen for 2 1/2 years after doing chemo/rads for stage 2,grade 3 cancer with one lymph node found.   Ever since I started tamoxifen, I've been exhausted.  My internist found I had become hypo-thyroid, however, the meds didn't help much the fatigue.  She then suggested I do an anti-depressant.  I tried for about 2 weeks, but just felt bad.  My oncologist began mentioning mds as my counts were so low.  But just before I was to have a bone marrow biopsy, she took me off tamoxifen to see if that helped.  Wow.  What a change!

The overwhelming fatigue--gone.   I had energy.  I had hope.  I had laughter.  I know this sounds silly, but the tamoxifen was imprisoning me, and I had no idea these were all s/e of the drug.  I thought I had no s/e because I didn't gain weight nor have I had one hot flash yet.   My doctor wanted me to try aromasin.  She was reluctant because although I haven't had a period since chemo, my estrogen was 34.  But we're trying it anyway.  I had great hopes for this drug, but I feel awful.  My feet hurt.  I'm tired again.  I get irritable easily.  Sleep is difficult.  My bones (arms, hips, lower legs, shoulders) have sharp pains.  I just want to sit.  And while it's only been 2 weeks, and that every other day, I am retaining water and gaining weight.  Still no hot flashes, but my doctor says that being constantly cold, as I am, is the same thing as a hot flash.  I get cold flashes.  Has anyone heard of this before? 

Anyway, I just feel like I want to quit aromasin.  I would rather do tamoxifen, but I think I want to quit all together.  Did I mention my sex drive returned during my 6 week vacation?  That is so important.  My whole qol was so wonderful for a while.  Yet, my tumor was something like 90 or 95% estrogen positive.  I don't know if it's relevent,but I was nursing my baby when I found the tumor at 52.  I became pregnant at age 49, completely unassisted.  Was that because of estrogen?  Am I just strongly estrogen positive; hence, I got cancer?

Whether it's because  my counts are low or because of cancer or just because I might be scared, I feel the cancer will eventually kill me.  Sometimes I think it would just be better to have a few good years than be stuck in this misery for another 3 years or so....Sorry for the long rant, but can anyone advise or even understand my feelings...sometimes, I just feel guilty for not wanting to do tamoxifen or aromasin, that I not grateful enough for these drugs that will keep the cancer away (maybe).

Thanks for your thoughts,
Connie





DoreenF

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Reply with quote  #2 
Hi Connie -  I know that Aromasin and Femara work in similar ways -  Arimidex is in a different category.  Perhaps you can switch to one of the remaining two drugs that are available to us and she how your side-effects are with them.  I know some doctors say that the side effects of a drug lessen over time.  I'm not sure how much time they say we should give the drug a try for.   I'm taking Arimidex - and have been taking it for several years ..

It sounds like you had a awful time on tamoxifen. 

Interesting thought about the cold flashes ... I'm always cold too - and only occasionally have hot flashes ..  at least that is what I think they are - mine are different though than what some women have described their hot flashes as. I don't get all sweaty - just hot and uncomfortable. 

I hope that you'll find something that will help - as you sound miserable .. and QOL is important as we all know.

Hugs,
Doreen


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Calico

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Reply with quote  #3 
Connie,
so sorry you have such troubles.
The water weight might be due to the steroids in Aromasin, it is steroid based. I don't know how much this could affect your well being (mood) but when I had steroids with my treatment, I wasn't myself.
Some docs switch your AI's until you are more comfortable.....
Have you considered Femara?
I do have general bone pain as well and I am depressed but both could probably be helped somewhat (still waiting for Lexapro to kick in), with me excersising helps a lot, fish oil and turmeric are a must for me or I creak and squeak like the tinman.
As for the cold flash, I seem to have that too, I can go from freezing to hot in a minute.
Have you had your thyroid checked to make sure chemo didn't affect it?
I just found my TSH to be a bid high (hypothyroid) and maybe the cold feeling is from that, I don't know.
Are you able to exercise a little bit? It helps me out a lot, actually, when I feel stiff getting up, as soon as I am walking, I am happy like a fish in the water so to speak.
Hopefully you get lots of ideas here pretty soon and you can be helped.

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Karen1956

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Reply with quote  #4 
Connie - I have been on all the AI's as well as tamox.  Aromasin is steroidal based where as Arimidex and Femara are not.  Aromasin has been the gentlest to me.  After chemo I started on Arimidex for 8 months, Femara for one month and tamox for 2. Then I had a 3 week break (and it was great - felt better).  I have been on Aromasin for 16 months.  The GI effects of tamox were harder on me.  I do have joint pain, swollen hands (especilly when it is hot)tendonitis (surgery on both wrists), trouble sleeping, hot flashes, night sweats, hair thinning, lack of libido etc.  I try to walk daily which helps - it is the only exercise that I enjoy and the price is right.  My onc encourages me to do some sort of exercise daily.  At just about every visit with my onc, I ask about going off the AI's but he really wants me to try to stay on them.  He says they are providing me great benefit.  He says that for most women, the side effects go away after 6 months or they get used to them, but for a small percentage they continue to exist. I have 2 years 8 months to go.  I figure whatever decision I made, I need to be a peace with it.  What works for you is what is best - listen to your heart and your body.
Hugs to you.
LizM

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Reply with quote  #5 

I am wondering if you estrogen levels are a little too high.  It is my understanding that 20 and below is postmenopausal and that if you are not postmenopausal, aromatase inhibitors may not be effective.  If your ovaries are still producing estrogen, you may want to consider removing them or suppressing then with drugs and then taking one of the aromatase inhibitors.  It is my understanding that Femara and Arimidex are interchangeable and that Aromasin if somewhat different because it is steroidal.  I was 49 at diagnosis and premenopausal.  I was also stage II with one positive node.  I had chemo which put me in chemopause but my oncologist would not put me on an aromatase inhibitor until he was sure I was postmenopausal.  He wanted me to take Tamoxifen for 2 years and then switch when he was sure I was postmenopausal.  I decided to just remove my ovaries so I could go directly on an aromatase inhibitor.  I am now taking Femara.  Since you had a positive node, you are at an increased risk of recurrence.  Just 2 1/2 years may not be enough time on hormone therapy.  After I had my ovaries removed by estrogen level was less than 10 and has stayed that way.  Just a though and good luck with your decision.

coffeepot

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Reply with quote  #6 
Thanks for all the support, info, and for listening to me whine.  I decided not to take the aromasin--I just couldn't face the side effects, especially for this holiday week when I'll see my older children, family, and friends.  I'm sick of being tired and sick and out of it.    I just talked to my doctor and told her I would gladly go back on tamoxifen, I just won't take aromasin.  First she recommended falsodex monthly injections, then she decided it would be better to try Femara and see how it affects me.  So, giving me a week rest, I start next Monday.
Liz, my oncologist was concerned that my estrogen was hight, but she consulted with other doctors who thought that I was in menopause even with the higher estrogen.  Remember, I haven't had a period since chemo.  My doc said it was very unusual for the estrogen to be so high--but I wonder. I have taken tamoxifen for 2 1/2 years now.
Calico, I am hypothyroid and it's checked frequently because it seems to be getting worse.  Even when I'm at a very good number, I'm still freezing.  Interesting that so many of us are--I hadn't heard of that as a s/e before, but I googled it and it is! 
The weight came off quickly!  Amazing but since Thursday, I've lost 5 lbs.  I feel so much better--still one ache, but no longer do my feet and legs and chest and head hurt.  Amazing.
I will let y'all know about the Femara--anyone hear use falsodex?
Connie

Calico

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Reply with quote  #7 
Lets hope for a good time on Femara!
Don't forget Calcium, Vitamin D and Magnesium to prevent bone loss!

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coco

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Reply with quote  #8 
Hi Connie,
Your case sounds somewhat similar to mine, although I couldn't tolerate Tamoxifen due to severe cognitive impairment (I had none of the "usual" S/E's like hot flashes, either). I switched onc's and my new one tested my estrogen levels and found I was post-menopausal (like you and others, chemo pushed me over the fence) so Tamoxifen wasn't really the right drug, anyway. I am also hypothyroid, which was discovered years before my cancer diagnosis. My understanding is that it's not a S/E, but a common pre-existing condition in women who develop breast cancer. I am currently not taking any hormone therapy drugs, waiting until my prophylactic mast. in January, and then my new onc wants to try me on Femara. So please keep us posted on your progress. I'm so glad you're feeling better, and BTW, you were not whining! You were simply seeking advice, and I for one (and no doubt others) will benefit from your question and the other womens' responses. So thank you and good luck with Femara!
(Thanks Doreen, Calico, Karen and Liz - your experiences are helpful to me, too.)

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bac10

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Reply with quote  #9 
I finished chemo last December and started taking Arimidex in January.  The joint pain, fatigue, hot flashes, etc. were awful.  My doctor asked if it affected my quality of life and when I burst into tears he agreed to change me to Femara.  I have the same side effects just not as bad.  My left hand stays swollen and painful all of the time (BC was on right side), my joints hurt...especially my ankles and I still wake up soaking wet at night from sweats. 

Like you, Connie, I'd really like to just stop taking any of it and then the doctors all remind me of what it's doing for me.  Four more years...just four more years.

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Reply with quote  #10 
Hi Connie,

I was Stage I, node negative, dx at 51. I'm 53 now. I had a hysterectomy at age 38 and oophrectomy at 46 (because of a 9 cm cyst).  I then went on HRT until my cancer was dx. Of course at that time, I went into immediate menopause.

My cancer was 100% estrogen positive.  I tried Tamoxifen 3 or 4 different times and Arimidex once.  Because I also had preexisting depression (controlled with antidep), the two medications totally exacerbated that condition and we couldn't control it.  I also had severe nausea and to a lesser degree, the other SE's. 

After 9 months of agonized research, prayer, discussion with loved ones and my PCP, I stopped taking Tamox and/or Arimidex and wouldn't even fill the script for Aromasin. 

What I realized is that I am in complete menopause now and have all the symptoms that go with that, irregardless of cancer. I also know that I need what tiny bit of estrogen is produced from my adrenals to help keep my body in balance.  My QOL was directly tied to managing my preexisting depression and that could not be managed on Tamox or an AI. 

I am not 100% at peace with this decision, but am grateful my cancer was early stage. 

There are women who choose QOL over these meds.  You took Tamox for 2 1/2 years, which is the greatest window for ER+ cancer to return.  I met a 49 yo woman when I had my mammo the other day. She's been cancer free for 7 years.  She was Stage II, had a lumpectomy and rads and took Tamox and Lupron for 2 1/2 years and quit because of QOL issues. 

I truly understand the heartwrenching, soul searching that takes places when trying to balance QOL and taking these meds.

Best of everything to you.
Bren





coffeepot

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Reply with quote  #11 
Thanks to all of you who responded.  I am cautiously optimistic about the Femara.  I have been taking it for almost a week, and then only every other day, and while I immediately notice the sore joints, feet, legs, arms, etc., I haven't gained weight as I did with aromasin.  Nor do I think my mood is as black.  My husband thinks it is, but, I don't!  And I am sleeping much better, as well.

I almost didn't take it.  I felt so good.  I just didn't want to take something that causes me to feel bad again.  It really does remind me of chemotherapy in that it just seems counter intuitive to take something that makes me feel so bad.  I really didn't know the tamox was causing so much misery, that even the overwhelming fatigue was somehow related to it.  I knew I didn't feel well, but I just assumed that no one would if they were as tired as I was.  The main think lacking was joy.  Anyway, I'm fine now.  I still get one more week of every other day.  I really wonder about taking an anti-depressent if the fatigue/moods return.  I am hoping I can just handle it on my own. 

So, I'm launching into this, almost a happy camper, and ready to forget, once again, that I have had cancer!
Calico

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Reply with quote  #12 

Glad to see it works for you. And remember, if you do get side effects, there are remedies to help a bid.....


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CurlyGirly

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Reply with quote  #13 
Hi Connie

I know how you feel. I was on tamox for 3 and a half years and aromasin for a year and 7 months. I pretty much feel like crap most of the time, and not a day goes by that I don't think about cancer and I figure it's still in me, just not sure where yet. I am so sick of doctors that for the last few months, I've been avoiding them. I went to a clinic for a flu shot, but I won't go to my family doctor. It's like I associate her too much with my cancer dx.

 I have neuropathy in my feet, back and hip pains, moody or anxious like you wouldn't believe, hourly hot flashes since chemo (2003), and my sleep times got screwed around(I can't sleep until around 7am, so that's when I go to bed). I feel like quitting the aromasin, but I'm too scared to. However, the last week or so, I think I'm actually considering it. Oh yea, I forgot to mention the hair thinning,and the adolescent-like acne and mustache!

Anyway, best of luck with Femara. Hopefully it will be kinder to you.

Jan
coffeepot

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Reply with quote  #14 
Jan, have you asked your oncologist to try something different?  My doctor really thought I'd do better with the aromasin, but she totally understood when I told her I couldn't do it.  One of my main complaints before aromasin was the loss of my libido, and she thought this would be easier.  It wasn't.  While I know different drugs work for different people, that one didn't work for me.  If the femara doesn't work, she wants me to try faslodex injections as she said many of her patients have fewer side effects with it.  I hate shots, so I'm hoping I do okay, but I won't hestitate to change if those black moods descend on me.  I actually wouldn't take the drug during Thanksgiving (I had a reprieve though from my doctor) because I didn't want my older children whom I would see then and relatives to only remember a catatonic me....the way I've been since chemo.  
  One more thing about sleep (so important, almost as important as sex!)...I sleep fine with femara and melatonian.  I didn't sleep well with tamoxifen or aromasin.  My feet no longer hurt.  I wish doctors would be more forthright about the side-effects of these drugs, especially the way if affects mood.  Maybe they don't know?

Karen1956

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Reply with quote  #15 
I have tried them all and have been on Aromasin for 16 months - side effects include: Sore joints, swollen knucles, tendonitis (surgery on both hands for this,) no libido, headaches, depression, hair thinning, (CTS on Arimidex- surgery on one hand)  and the list goes on and on.   I am ready to bag them
When my mood is good, I can say okay I can put up with side effects. But days like yesterday when I had a massive headache, I ask myself is it worth it?  Then I feel like to heck with the AI's.
 I know onc won't be happy about if I go off them, but then again it has mentioned QOL.  I see him again the end of January - I've been on AI's (and tamox) for 2 years and 4 months  - that has to have provided some benefit.  Just can't see 2 1/2 + more years, never mind going to 10 years on these which some docs are now doing as research is beginning to show a benefit to continue these meds beyond 5 years.  Decisions, decisions, decisions!!!

edge

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Reply with quote  #16 

Jan:

 

I posted a response on The Cutting Edge forum.

 


Constantine Kaniklidis
Breast Cancer Watch
edge@evidencewatch.com

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