HELP! Cannot tolerate Hormonal Therapy...ADVICE appreciated!

[Renee L]

I need some advice. I am 49, diagnosed with Her2+, ER+ PR+ Stage 2B (found in nodes, PET scan clear) March 2010. So relieved to say I made it through 3 surgeries, 6 months of chemo, 10 weeks of radiation, and a year of Herceptin. BUT I am very scared because but I cannot tolerate ANY of the AIs. Arimidex, Femara made me incredibly sick, I cant even tolerate Tamoxifen, had to stop after 3 months. While on AI's I developed Osteoporosis and lost so much weight I couldn't function, sleep or eat. Tried meds to treat side effects, then meds to treat THOSE side effects. Quality of life became more important than quantity and my Onc took me off all hormonal therapy and I am trying to prevent recurrence with lifestyle changes and holistic treatments. I had a total hysterectomy with ovaries removed at age 45. My Onc knows traditional medicine but unfortunately lacking alternative medicine knowledge and unable to give me direction. ANY advice on diet, supplements, antioxidants, etc. would be greatly appreciated! Anyone HER2+, ER+, PR+ not doing hormonal therapy please share. Greatly appreciated!!!

[Gerri]

Welcome Renee to our support group. When I read your post I remembered that I had seen research being done on mushrooms as AIs so I did a quick search.

I attached a link to an article (there may be more recent ones) and a link to the researcher's page. I didn't have time to read it completely but hope it helps to give you a start in the right direction.

Hopefully more knowledgeable members will chime in with more ideas.

Best of luck to you.


http://cancerres.aacrjournals.org/co...24/12026.short

http://www.cityofhope.org/directory/...aboratory.aspx

[Pray]

Hi Renee, Welcome to the Group. Here you will find a wealth of info. and many people who can relate. I'm sorry you are unable to take the Horm. therapy. I too am triple positive and was unable to take tamoxifen and I am struggling to stay on the Arimidex. I am on mostly veg. diet. I do eat some fish once a week for the protien. I also try my best to keep soy out of my diet. Which is very hard because it seems to be in so much! There are many women on this site that follow a veg. diet and many a very strict one. It is really up to you. You will see that lots of people swear by foods with antioxidents and so on that will keep the cancer at bay and or attack the cancer. What a women thinks is helping her another says the oppisite so all I could do was dig deep and find the diet that works for me. A Women on this site and many like her believe it is all a "crap shoot" I tend to believe them. Ask any question here, you will always get a reply and or a place to find the answer. They are all wonderful about email and private messages. Gods blessings to you. I hope you find some answers that work for you.Peace, Your Friend, Nancy

[karen z]

Dear Renee,
I am sorry you have had such a bad experience with hormonal therapies. Although I don't have specific advice, as I have had an easier (not necessarily pleasant) time with AIs, I know you will hear from many on the board who have not had an easy time. I have heard of symptoms like joint problems, etc. on AIs but not the kind of illness you have experienced along with such weight loss. Hopefully, you will hear from many other board participants after the weekend.

[Rich66]

Anti inflammatory supplements like boswellia, curcumin and fish oil may help. Did with my mom..noticed quite a difference.

[michka]

Hi Renee. I suffered from the side effects of AI when I first took them. My worst problem was pain in my back. I took a lot of Tramadol, a pain medication. When I just could not take it anymore my onc switched me to Faslodex. I had no side effects anymore. Maybe you could ask for Faslodex. I stayed on Faslodex 18 months with no problem. I hope you will find a solution. Michka

[sarah]

Hello,
Did you try taking them at night? I also took curcurmin (with food) and fish oil (omega 3). I drank lots of water and I don't eat much meat. I had bone loss and had to take a bone strengthening medicine.
Had problems on Femara but not enough to consider stopping.
It would nice if someone could figure out why some people have such severe reactions that they have to stop so that could be worked out better. It's still odd we all take the same dose regardless of our weight.
good luck
sarah

[Debbie L.]

I was going to mention faslodex also. Was that offered?

Maybe if you tell us the side effects that troubled you, someone might have more specific suggestions (although it sounds like they tried to treat them already, you never know -- for these rare things it's possible that there are solutions unknown to most (oncs AND patients), because most have not had to deal with the issue)

Have you had a referral to a comprehensive cancer center ( http://cancercenters.cancer.gov/canc...ters-list.html )? I would highly recommend that as they may have had more experience with this problem. It may well be that you simply cannot tolerate endocrine therapy but for peace of mind now and no regrets later, I think it's important to leave no stone unturned.

I doubt it's enough to solve such a bad reaction but it's kind of in the "can't hurt might help" category: quite a few women have found that supplementing with vitamin D has made the AI-pain side effects more tolerable. Have you had your vitamin D level checked?

The diet question (fats, carbs, soy, phytoestrogens, yada yada) remains an unsolved puzzle with evidence to be found that almost anything helps and almost anything hurts. It's frustrating and probably the best thing is as someone else said -- find what works for you, something moderate that makes you feel the best, and go with that. Try not to be overweight, there's good evidence that postmenopausally that is a factor. Also there is decent evidence that being physically active decreases risk of recurrence and those are categories of win/win (good for many other things, too).

Good luck, keep us posted.
Debbie Laxague

[Renee L]

Thank you Gerri, I appreciate it. I have been doing as much research as possible but feel overwhelmed (once again) with all the information...studies, results that don't necessarily apply to triple positive breast cancer. I feel better already seeing I received 7 responses to my plea for advice! Thank you.

I LOVE your member pic, such a beautiful moment captured with your mom.

[Renee L]

I apologize...I am attempting to respond to each of your messages individually by clicking the link inside, but they appear following the entire thread.

[ElaineM]

Perhaps your doc would be willing to try the Faslodex others have mentioned. I wonder if an endrocronologist
(spelling ??) might be able to suggest something else.
There might be natural alternatives to AIs like Femara, Arimidex etc. Try searching natural alternatives to Femara or Arimidex.
I would try the curcumin and other suggestions for any inflammatory conditions caused by AIs.

[Renee L]

My Onc first put me on Arimidex, by day 4 I was in a lot of pain, by day 11 I couldn't even walk. I was a fit 5'7-1/2" 120 lbs. and dropped down to 102 lbs, my connective tissue was going to mush, it felt like I was walking on bone no padding under my feet. Onc gave me a 8 week break to gain weight then tried Femara which I was able to tolerate for 2 months, similar symptoms but not as severe as Arimidex. Insomnia, anxiety, nausea, weight loss and then osteoporosis I was losing bone rapidly so my onc said no more AIs. I hoped Tamoxifen would be a better fit, since it can actually help bone loss, but it made me dizzy, vision problems, numbness in my limbs. I tried taking meds at night, with food, but I have a high metabolism and simply cannot tolerate meds. I was shocked to learn Tamoxifen only reduced my recurrence by 2%!

Ironically I was vegetarian for over 25 years but after my diagnosis (no soy) I now eat salmon (wild caught only) chicken breast and some turkey, I try to eat organic as much as poss. I tend to agree it IS a Crap Shoot... genetics, lifestyle, environmental factors like pollutants and stress, all we can do is lower the odds of recurrence.

Thank you!

[Renee L]

My onc didn't offer Faslodex, when I asked if there were any other meds to try he said they fell into the same class of drugs and would probably cause the same side effects. He said appx 2-3% of patients cannot tolerate hormone therapy. I see him next month and will definitely ask him.

I try to be conservative with supplements, knowing the best source of vitamins and minerals come from food but I do take 1,000 mg Calcium for the osteo, 600 iu magnesium, and I was Vitamin D deficient and take 4,000 iu D3 daily. I try to be physically active, walk or bike twice week. I am not taking any meds at all and feel better (just started Prolia for the Osteo every 6 months) I have the typical post treatment, menopause and osteo pains but common sense tells me to listen to my body, stay as active and positive as possible. But without hormonal therapy I feel like I'm "working without a net".

THANK YOU everyone for your imput!!!! <3 Renée

[tricia keegan]

Raloxifen is a drug for osteoporosis but trials show it gives some protection against bc but think its only for people who never had bc, however it may give you some protection.
There's also Afinitor currently undergoing trials and looking good but is expensive and most insurance companies wont cover until other hormonals have failed!

[ElaineM]

I just found this.

Inhibiting Aromatase via Foods

AICR ScienceNow
Volume 20
Spring 2007

http://www.aicr.org/site/News2?page=NewsArticle&id=11799&news_iv_ctrl=0&abb r=res_

I understand your oncern. However, I think that for Her2 positive cancer the hormonal therapy is less important than if you were ER positive/Her2 negative. You already have done a lot by doing chemo and Herceptin. Try not to worry about the hormonal treatment.

[Rich66]

For adjuvant treatment, might be very difficult to get coverage for Faslodex. Still could try Aromasin which is "approved" for adjuvant...and operaetes a little differently than the other AIs. I knwo my mom's onc back in '05 suggested that one might be easier to tolerate..but back then was not covered. Was approved later.
Seems worth trying. There is some suggestion that her2 therapies like Herceptin might push cancer cells towards being more active on the ER side...even if originally ER-. So if you already had some ER activity...


As an aside, have never heard a good thing about carbs and cancer..only bad.

From a non-med standpoint, there is this on yoga:
http://www.ncbi.nlm.nih.gov/pubmed/22225932

IMPLICATIONS FOR CANCER SURVIVORS: Results of this qualitative analysis indicate that interventions to support BCS with AIAA are warranted. Yoga appears to positively impact these side effects of hormonal therapies.

Managing the Side Effects of Aromatase Inhibitor Therapy


LINK

The incidence of musculoskeletal issues appears to be highest in patients who are in transition into menopause, including patients who experience a loss of ovarian function secondary to chemotherapy.[15] Musculoskeletal issues appear to be most significant during the initial period that patients take AIs; they then improve over time. A retrospective analysis of the ATAC trial suggested that the presence of joint symptoms may be associated with a decreased risk for recurrence,[16] although such an association was not confirmed in an analysis of the MA.27 trial.[17] The management of musculoskeletal issues is challenging and poorly defined to date. Anti-inflammatory agents may be helpful in some patients, while many other patients can function without intervention, particularly as symptoms improve over time. There is anecdotal evidence to suggest that changing to an alternative AI may ameliorate symptoms, but as stated above, there is no evidence to suggest that one agent is less likely to cause musculoskeletal issues than another. In some patients, switching to tamoxifen, which has a lower incidence of musculoskeletal issues, may be necessary. There is some evidence to suggest that vitamin D may play some role in musculoskeletal complaints associated with AIs. In one study,[18] patients with normal or high vitamin D levels were less likely than those with low levels to report arthralgias when taking AIs. With vitamin D deficiency having been reported in more than two thirds of patients with early-stage breast cancer,[19] it would seem appropriate to check vitamin D levels and replace as necessary in patients in whom AI therapy is planned.

[Debra]

I did not tolerate tamoxifen or arimidex very well. When I switched to aromasin, it was magical (for lack of a better term)! I had absolutely no joint pain. I tolerated this med for four more years, making that a total of my required 5 years and just had five year check up in November and went off meds. I also have to tell you that before I switched to aromasin, I started to excercise because I was advised this greatly reduces some of the joint pain. As bad as it felt at the time, this was great advice. Exercise really does help with some of the pain. Then, when going off arimidex and starting aromasin, the pain completely subsided and I was able to exercise even more effectively. Made a world of difference in my everyday life!
Maybe this isn't the case for everyone butmaybe aromasin is worth a try for you. It is an AI so not sure why one would be advised and not the other!

[Rich66]

Femara and Arimidex are non-steroidal AIs wheras Aromasin is steroidal. Totally armchair pharmacist here but steroids are known to reduce inflammation. So maybe taking anti-inflammatory supplements with non-steroidal AIS or steroidal AI Aromasin will be tolerable.

[Debra]

I actually didn't know that Rich! Then I wonder why aromasin isn't exclusively prescribed to those that struggle with such awful joint pain from the other two? I can only speak for myself that it totally made a world of difference to me; I was a new person when I made that switch!