struggling with my AI's(i hate them)

[mimiflower07]

hi guys, well i have been bouncing right along with the usual aches & pains but my body pains have hit a new cresendo. I honestly do not feel i can continue to take them. I ve given my self a 2wk holiday , sorta told the dr sorta not. I really felt i needed to remove one variable. To really assess if my stomach distention, burning(like ulcer symptoms)roaming back pains that find me attached to icepacks daily and fatigue were all
the result of my medication. Well guess what...fatigue has improved so much i require less naps. the stiffness in joints almost gone. Back pain still there but with less intensity.(no pain at night) But the big one, my stomach is much better. Less constipation. Almost feel like my old self(heaven forbid) I'm on aromasin, have been on tamoxifin then crossed over after having ovaries out. Roughtly 2.5 yrs intotal. I would consider trying another to get me to 3yrs. Honestly i just don't know. I have arthritic changes to my spine before ca now they seem amplified. I'm scared of long term damage as a result of staying on for full five yrs. My kids want a mom who can still run, and ride bike blablabla..
I do not take this lightly but i just don't know what to do. how much estrogen can my fat cells be making.
Any words of wisdom, now would be the time to jump in. I've called my onc to make an app but i want to know if other have found improved quality of life on different meds or if those who went back to tamoxifin
feel happy with there decisions. Or anyone who has just discontinued them.

thanks Suzanne(3 yrs ned)

[sarah]

Hello Suzanne,
sorry to hear you're having so much trouble with your AIs. As you'll notice on other posts, many have had problems with AIs.
Have you tried taking it at night? I was told to in order to lessen the side effects - pain, hot flashes, etc.
Maybe ask your doctor about taking Raloxefene instead, a friend of mine takes that and has no problems and it also strengths bones. It may be the same thing as Evista but I'm really not sure. I took Femara.
I suppose it depends how estrogenic you are. I know some people have asked how come we all take the same mg of AI whether we're thin, fat, v. estrogenic or not.
I would have been too scared to stop but I have invasive HER2 cancer so I'm nervous.
I hope you find a solution that you can live with and protects you.
health and happiness
sarah

[caya]

I have been on Femara since Jan. 1, 2010. My onc. switched me after being on Tamoxifen for 2 1/2 years as blood work showed I was now postmenopausal. The first few months were brutal - severe joint and muscular pain, swelling of feet, ankles, major fatigue... but I have fibromyalgia as well and the Femara seemed to only exacerbate the symptoms.

Howere, I do have to say, 9 months later, things have improved for a number of reasons:

- My GP, G-d bless her, put me on Meloxicam - 7.5 pill/day (this is an anti-inflammatory). She also increased my Vitamin D pill intake to 4500 U/day. I've also been taking a shot of Vitamin B12 once/month... all have helped. Not perfect, but much better.

- Also my onc. told me that it can take a number of months for the body to get used to the Femara, and that often the symptoms can "settle down." I would concur with that assessment, at least for me.

- I also take warm baths with epsom or dead sea salts 2 - 3 x/week. - Very soothing. I have very mild lymphedema in my right hand, so I don't soak too long (15 minutes).

I was highly ER + (90%) PR+(50%) - so I will suck it up and continue on the Femara, at least for now. In fact I have a couple of friends who are in a clinical trial taking Femara for years - going on 10 years - I will ask my onc. about that when I see him next week for my routine check up.

all the best
caya

[R.B.]

Hi All

I sadly do not have time to do lots of reading on this at the moment, but a quick google found the paper cited below - your onc may not have seen it or know more. I have not read the paper, and only bring it to your attention in case of interest.

I have some information I dug out a while ago and will try and find it see if it is still relevant.







The Predictive Value of HER2 in Breast Cancer
Martine Piccart, Caroline Lohrisch, Angelo Di Leo, Denis Larsimont

Institut Jules Bordet, Brussels, Belgium

Oncology 2001;61:73-82 (DOI: 10.1159/000055405)


Measurement of molecular markers predictive of response to therapy should enable more selective and effective utilization of anticancer agents. The predictive value of HER2 remains a complex and inconclusive subject. In metastatic breast cancer, HER2-positive, ER-positive patients can show responses to endocrine treatment, but experience shorter time to progression and survival than HER2-negative patients. In the adjuvant setting, weak, retrospective evidence suggests that tamoxifen is potentially harmful in HER2-positive patients and that there is no benefit from prolonged tamoxifen therapy. It has not yet been demonstrated conclusively that HER2 positivity increases resistance to adjuvant cyclophosphamide, methotrexate, 5-FU (CMF), but there are indications that HER2-positive patients benefit more from adequately dosed anthracyclines than from CMF. The greatest value of HER2 as a predictive marker lies in the prediction of response to therapies that target HER2, such as Herceptin®. Patients with strongly HER2-positive breast cancer derive significant clinical benefit from single-agent and combined Herceptin therapy. HER2 testing has become an integral part of the optimal management of the breast cancer patient. Best current practice in adjuvant breast cancer therapy based on the current knowledge of the potential predictive power of HER2 constitutes not denying tamoxifen to HER2-positive, ER-positive patients or CMF to HER2-positive patients. Outside of clinical trials, adequately dosed anthracycline-based chemotherapy is the current preferred adjuvant treatment option for HER2-positive patients.

[R.B.]

It seems the answers as usual are far form straight forward.


Understanding Resistance to Tamoxifen in Hormone Receptor–Positive Breast Cancer
Michaela J. Higgins1 and Vered Stearns1,a

1 Sidney Kimmel Comprehensive Cancer Center, Johns Hopkins School of Medicine, Baltimore, MD.

aAddress correspondence to this author at: Sidney Kimmel Comprehensive Cancer Center, Johns Hopkins School of Medicine, 1650 Orleans St., CRB I, Rm. 145, Baltimore, MD 21231-1000. Fax 410-955-0125; e-mail vstearn1@jhmi.edu.

The first 300 words of the full text of this article appear below.

The selective estrogen receptor (ER)1 modulator tamoxifen has been used for more than 30 years to treat and, more recently, to prevent breast cancer. Unfortunately, even among patients with ER-positive tumors, the response achieved with tamoxifen treatment is variable. Recent years have seen a sharp increase in the number of studies suggesting that the efficacy and safety of anticancer therapies such as tamoxifen depend not only on tumor characteristics but also on characteristics of the host. It is probable that future prescribing of truly "personalized" treatment approaches for our patients will be determined after analysis of both sets of traits. This Perspective summarizes recent basic and translational studies of putative mechanisms of tamoxifen resistance.


Tumor Characteristics

Resistance to tamoxifen therapy may be intrinsic or acquired. Breast cancers that produce either ER or progesterone receptor (PR) have the potential to respond to tamoxifen; however, a proportion of ER-positive tumors are intrinsically resistant to the drug. Historically, metastatic breast cancer that is both ER and PR positive (suggesting that the ER is functional) has an approximately 80% rate of response to antihormonal therapy, whereas tumors that are ER positive but PR negative have lower response rates, approximately 40%. Tumors that do not produce ER or PR are not expected to respond to tamoxifen.

Investigators have proposed several mechanisms of intrinsic resistance, including cross talk with growth factor–signaling pathways and a balance of ER coregulators. In addition, alterations in epigenetic regulation may cause a lack of ER production or lead to the acquisition of resistance to hormone therapy.

Recently, breast tumor phenotypes have been further characterized with DNA microarrays, and such studies have identified 5 clinically distinct subtypes: luminal A, luminal B, ERBB2-amplified, basal-like, and normal breast-like. So-called luminal B breast cancers that are classically associated with amplification of ERBB22 [v-erb-b2 erythroblastic leukemia viral . . . [Full Text of this Article]

[MJo]

I hate them too. But my doctor and his nurse practicioner strongly urge me to continue. I have seven more months of Femara and I'm counting the days. My life is tolerable with them. If your life is intolerable, maybe you could ask for a lower dose before you go off completely.

[Debbie L.]

Suzanne, you're not alone. The side effects seem to vary a lot from one woman to the next, both in what they are and how severe they are. I hope that the recent studies showing poor adherence to endocrine treatment will serve as a heads-up for researchers to find ways to help women tolerate the AI's, or maybe just find better drugs.

It's possible that you will eventually decide to stop all endocrine therapy in exchange for better quality of life. But you have many things to try first!

I know women whose AI-related pains have been helped by:

1. Vitamin D supplementation - get your levels above 30 or even 40.

2. Try another AI, either aromasin/exemestane or femara/letrazole. They do basically the same thing but one study showed that about 50% of women who try a different one get some relief from the side effects.

3. Go back to Tamoxifen. The AI's offer only an incremental benefit over Tamoxifen and if the other option is nothing, then Tamoxifen offers a big benefit. The studies that initially seemed to show that AI's might be better for certain subgroups like HER2+ don't seem to have played out -- it seems to be more that some ER+ cancer is resistant to all endocrine therapies, and HER2+ is more likely than most to be resistant (but no way to know for any one individual, if her ER+ cancer is resistant).

I think that there IS a big question needing an answer about duration of endocrine therapies. This is true for all ER+ cancers but especially for HER2+ ones where the synergy with Herceptin (and/or Lapatinib) seems to be a factor in sensitivity/resistance. It seems like the smaller a subgroup is, the less we know about it because few studies have been large enough to tease it out to such details, or the studies were done before we even knew the markers to see the subgroups.

We hear a lot nowadays about triple negative breast cancer being understudied and unaddressed but the same could be said for triple positive, in my opinion.

Keep us posted - what your onc says, what you try, and what works.

Debbie Laxague

[ElaineM]

I am sorry you are suffering with A. I,s. There may be options. R. B. put some good links in one of the previous posts. I posted something about A. I's in the Diet and Nutrition section if you decide to go that route.
http://her2support.org/vbulletin/showthread.php?t=46664. There are foods that may or may not help
block estrogen if you decide to stop A. I's at some point.
I also posted something about defeating cancer through food in the Diet and Nutrition section
which is actually about anti angiogenesis (cutting off the blood supply to tumors) through food.
You may want to talk to your doctor about this. Maybe the two of you can discuss the pros and cons of A. I's and decide what to do in the long term.
I hope you feel better soon. Take good care of yourself.

[Becky]

Hi Suzanne

I'm glad you're doing well, sans the AI side effects.

You can try switching to Arimidex or Femara. If you switch (lets say) to Arimidex but after a few months, you have problems, you can then try the Femara instead. This will at least give you perhaps another year on something. Evista, which works like Tamoxifen, is another choice. It does not have as much side effects as Tamoxifen.

Perhaps you should discuss a switch with your onc. If everything is a bother, you can at least know you tried everything.

[sassy]

Hey Suzanne,

Good to hear from you again, but sorry you are having such a difficult time.

I would urge you to consider taking Lasix for the joint stiffness. I have been on this for several years and it has helped tremendously. Seems not many have tried this but there has finally been a recent study. There was a previous post that I'll try to find for you.

We all have to make our own decisions, but maybe trying some other options and approaches would be beneficial.

[sassy]

Here is the thread on Lasix.

http://her2support.org/vbulletin/sho...ighlight=lasix

[mimiflower07]

thank you all for your thoughts and knowledge. I made my calls today, thankfully the doc was great. He called me back and
said he would think on it then come up with a new plan.
I just feel so much better since my little holiday but its over and tonight i have to restart until i have a new plan.

Just feel that i can come here to let it out. kinda of freaked out if they
extend taking A.I's upto 8yrs!!
i always feel like i have a great team..
feeling better, best wishes to all of you
suzanne

[Rich66]

Before you ditch the AI or get a Lasix RX, you might try some Boswellia. My mom noticed an improvement immediately after long term Arimidex ..and it has anticancer properties of its own.

[harrie]

Suzanne, I had joint problems with Arimidex. Switched to Femara and have almost no problems.

[tricia keegan]

Suzanne, my own side effects lessoned the longer I took arimidex, glucosamine/chondroitin helped too.

A friend tried taking it at night to lesson severe side effects with no sucess and now takes it every other day which seems to be helping her. Like you, she had hoped to continue as long as possible on it. I hope your onc finds a happy solution!

[Laurel]

I just ordered some boswellia as Rich had suggested. As time has gone by I have gotten increasingly stiff in my knees and hands on Femera. I will be starting my 3rd year end of October, so 3 more to go. My goal is to hold out hold out a bit longer before switching to Arimedex for a go with it. I take Vit D and glucosamine presently.

There is no way I am doing more than 5 years of this stuff.....

[BonnieR]

I am doing pretty well on Aromasin after a bout of Femara. My onc suggested that often one can switch around, finding what is best tolerated. Or staying on one until the SEs accumulate and then make another change.
We all tolerate the various drugs differently.
Keep the faith.

[Patb]

I have been on Arimidex four years. Joint pain,
fatigue are some of the side effects but the
thing that helps me the most is exercise. I hate
it but it works. Everyday is best so your joints
stay lubricated and the joint pain goes away.
When I miss a few days I am so stiff. Good
luck with your issues.
Patb

[mimiflower07]

thanks again for all the replies. Still waiting for my app with onc.
I have noticed that i have less pain when i take aromasin every other day. so the one size fits all may well be the problem. I'm very active..so it helps but still some days are worse then others.
Would like to try femara see if fatigue lessens. It feels cumulative. First 2yrs it was noticable but manageable. now it has progressively gotten worse.
Are there others out there that are taking thier meds every second day? Would that be suffient coverage?
thanks again
suzanne

[AlaskaAngel]

Hi, I chose not to take an AI (after taking tamoxifen for 1 3/4 years originally), so I don't personally know what taking one is actually like.

But in terms of dosing, I want to post this for you to consider, as it is recent:

http://jco.ascopubs.org/content/28/21/3405.full

AlaskaAngel

P.S. I like to add the title and where the article is from, because I have found that over time sometimes the links themselves stop working.

2010 by American Society of Clinical Oncology
Obesity and Hormone Therapy in Breast Cancer: An Unfinished Puzzle

Pamela J. Goodwin