Aromatase Inhibitor and just walking away.

marijen

So one person says it isn't and one person says it is? I'm sorry. The MO has it wrong and the hepatologist has it right. But MO should know.

wabals

MOs do not want to know. She may be right but it sure is quite a coincidence. Granted it is unusual but there are scholarly articles on it

marijen

They are all like that - they just want to deny that chemo, rads, and cancer meds have any side effects at all. They did that to me. I was nauseous from rads and they said that can't happen. I got trigger thumb from Letrozole and I got "no it must be something else". But I correct them, tell them it's in the studies and the literature and other women have had it. I finally figured out why I was nauseous - the rads was killing all my cells - and it was toxic. That's pretty simple to figure out. Do they not believe in toxins? I fixed my trigger thumb with a brace.

wabals

I agre

Brutersmom

I met with the nutritionist today. Not what I expected. I found it very encouraging. She said they are learning more and more about nutrition and its role in prevention of cancer and its recurrence. I have been on the go all day. I just looked at a web site that she recommended and thought I would share it here. http://www.aicr.org/healthyrecipes/aicr-recipe-guidelines.html. She thought what I started doing this past week was a great start and gave me some additional guidelines to better balance my fat/carb/protein. The other thing she highly recommended that I get on a better exercise plan. I need more upper body. I am good with walking. She said that there have been a few studies recently that have shown more vigorous exercise. Fast walking or swimming for at least 1/2 hours 3 times a week is beneficial in prevention of cancer and recurrence. I know that I feel better this past week because I am thinking about what I eat and as a result eating better as well as I have been using the treadmill and pushing my self.

marijen

That sounds great Brutersmom. Keep us posted. Someone told me about a diet to help the thyroid and she lost 17 lbs in 25 days

kira1234

Butersmom thanks for the link. I've only checked it out briefly but looks very informative. I've bookmarked it.

Falconer

Aromatase inhibitor-induced arthralgia: a review

https://academic.oup.com/annonc/article/24/6/1443/...

Just read this article. Interesting.

marijen

Falconer great article, I will educate my MO with it. She's in denial about trigger finger, I had trigger thumb.

Two things, it's been over a year since I had a reclast infusion and my vit D is only in the 40s taking 5000 iu a day. Thank goodness they are looking into AIA. After two years plus my pain is worse and it's getting really hard to take, plus I may have developing eye problems due to Letrozole.

If anything I would say exercise is making the pain worse though.

Thanks.

marijen

Here is an current article on AIA - 15 pages

http://journals.lww.com/cancernursingonline/pages/...

kira1234

Falconer very interesting article.

One thing that stood out to me was how the als seemed to lower our vitamin d levels. I've been told by my oncologist that many cancer patients are low in vitamin d.

marijen

Effects of decreased estrogen

Deficiency Symptoms
Scarcity of estrogen leads to hormone imbalance and exhibits several symptoms.
Women may suffer from irritability and stomach problems like bloating, gas, discomfort, etc.
Insufficient supply of estrogen from the glands can cause osteoarthritis, leading to joint pain, swelling and stiffness of joints.
Women with decreased estrogen production can suffer from short-term memory failure or poor memory.
Low levels of estrogen can result in infertility, lack of menstruation, irregular periods, lack of ovulation, etc.
Decreased estrogen levels mainly result in bone loss. Women are likely to develop osteoporosis due to scarcity of estrogen.
Decreased sex drive, painful intercourse, vaginal dryness, itching sensation in the vagina are the main side effects of reduced flow of estrogen.
Low estrogen side effects in men include thin bones, as estrogen is responsible for good bone mineral density and strong bones.
Scarcity of estrogen can cause low blood pressure, excessive fatigue, thinning of tissues, lethargy on light exertion, depression, mood changes, thin hair, headaches, lower back pain, insomnia, etc.
Menopause symptoms like dry skin, hot flashes, night sweats, vaginal dryness, bladder infections, fatigue are experienced by women who have estrogen deficiency. Young women with low estrogen are likely to experience an early menopause.
Depleted estrogen levels can result in increased LDL (bad cholesterol) and decreased HDL (good cholesterol) which may in turn lead to obesity and heart diseases.
Estrogen deficiency can lead to rapid pulse rate, increased risk of heart attack, stroke and bone fractures. Women with lower than normal levels of estrogen may suffer from panic attacks and low self esteem.
Read more at Buzzle: http://www.buzzle.com/articles/low-estrogen-side-effects.html

marijen

I am confused - doesn't estrogen decrease in menopause??

Weight gain due to increased estrogen levels is said to be normal, especially during menopause and is not considered a sign of severe health problem. In fact, weight gain during menopause helps to lessen other related symptoms, like anxiety and hot flashes. However, since excessive weight gain can lead to other health ailments, one of the best way to maintain body weight is to gradually reduce your calorie intake or increase the body's metabolic rate. A regular exercise program, including weight training and aerobic exercises, is a good method to improve the body's metabolism. A balanced and healthy diet containing more of nutrient-rich low-calorie plant foods and less of processed and junk foods is recommended.
Read more at Buzzle: http://www.buzzle.com/articles/estrogen-and-weight-gain.html

kira1234

If I understand it the natural estrogen does reduce with menapause. But the fat in our bodies produces estrogen. It's so frustrating we gain weight because we're no longer producing estrogen yet the more we try to deplete it through the als the fatter we get.

Falconer

Marijen, thanks for sharing that review of the literature . It does seem to concur w your experience that exercise did not help your symptoms. Funny, I've tried all of the things tested- acupuncture, nutrition, supplements, exercise, yoga, NSAIDs. Only the latter two seem to help me. But I'm stubborn enough to keep exercising in the form of running. I'm trying to keep the weight gain to a minimum. When I was in active treatment and working and exhausted I gained ten pounds in only a few months. I do think that sleep disturbances, as mentioned in the article, due to joint pain, will be my biggest downfall. Here I am at 3AM, awake and unable to go back to sleep due to discomfort. Have to hobble my way out of bed to get the Advil!

Falconer

I think this thread could be renamed, Aromatase Inhibitor and just hobbling away. Walking, not so easy all the time!

marijen

Jus woke up for the first of many times tonight probably. Yes I'm hobbling, especially when I have been in the same position for a few hours.

MariH

Hi all,

I haven't yet started on my AI. I plan to start in a couple of weeks, after my upcoming surgical revision (perfecting) of my DIEP flap reconstruction. So I have been reading all of the posts to learn about different experiences and coping mechanisms. I'm hoping that my side effects will be minimal since I am 17 years past menopause and hopefully pretty low in estrogen already. I am already on venlafaxine to manage hot flashes, and I take Claritin daily.

I just wanted to clear up something with respect to percentage reductions in risk. If, for example, a treatment reduces risk of recurrence from 10% to 5%, itprovides a 50% reduction in risk, even though it is only 5 percentage points lower. I think there was some confusion earlier, which may have made it seem that AIs didn't have that much additional protective benefits.

Also, the jaw problems are caused by the bisphosponates (for osteoporosis), not the AIs.

May we all stay as healthy, physically and mentally, as possible.

wabals

MariH

AIs cause bone loss everywhere including the jaw

kira1234

Yes the als reduce all estrogen in our bodies. It can cause bone loss and lead to Osteoarthritis. This is why it's recommended you have a bone scan done before you start one of the ALs.

marijen

Aromatase inhibitor-induced bone loss increases the progression of estrogen receptor-negative breast cancer in bone and exacerbates muscle weakness... - PubMed - NCBI

https://www.ncbi.nlm.nih.gov/pubmed/28039445

muska

@ Wabals: " AIs cause bone loss everywhere including the jaw"

That's a bit exaggerated and not very accurate. AIs sometimes cause some bone loss but not always and not "everywhere." If you are referring to the osteonecrosis of the jaw (ONJ) it might happen in patients who take certain treatments for bone loss like bisphosphonates or denozumab. AIs do not cause ONJ. The drugs that are used to reduce aromatase inhibitor associated bone loss in rare cases might lead to ONJ. However, the odds of ONJ in those who take these drugs for bone loss is I believe 1% only and the 1% who get that complication are usually stage IV patients who receive higher doses and more frequently. Let's not scare people unnecessarily.

Disclosure: Started anastrozole (generic for arimidiex) two weeks before rads and has been on it for 3+ years. I have only minor side effects that are manageable and will stay on this drug as long as possible. Started Prolia (denozumab) injections twice a year for increasing osteopenia in the spine (only in the spine, hips are fine.) Had a couple of crowns installed and a gum graft while on Prolia - no issues.

2016Aug

DX w ER/PR Triple Negative 08/2016 tennis ball size tumor - had lumpectomy, chemo, rad - ended all 05/2017 - appt today w Chemo Dr she is very upset w me for not taking Anastrozole sd it w most likely keep cancer from recurring & poo poohed my concerns about all the side effects saying they will most likely not even occur - but pressed me to start taking it and stop if problems do occur. W/B 66 in Feb and still question why put oneself into creating problems that do not currently exist - bone pain, osteo, blood clots/stroke (family history) - have neuropathy in fingers/feet from chemo causes difficulty sleeping. Am more into natural - not medication - any suggestions?

kira1234

2016 I'd say give it a try. Did you have the oncotype test or mammaprint test done? I'm 64 and on Arimidex for 2 months so far doing okay. I was on tamoxafin for 4 years and famera which I wasn't able to tolerate for 2 years which is why I switched to the tamoxafin. Had a reacurrance just this year.

Brutersmom

AUG2016 Did you have an ER/RP+ tumor or a triple negative tumor or both? Aromatase inhibitors are for ER/+ tumors. Update your stats in your profile on this site it also helpful

wabals

Muska

You may want to read Potential Implications of Adjuvant Endocrine Therapy For the Oran Health of Postmenopausal Women With Breast Cancer by L Susan Traichman, U of Michigan.

Don't confuse osteonecrosis with osteoporosis. They are very different conditions with different causes.

Bones of the mouth are estrogen dependent as are other bones and are subject to same effects from

Glad you are doing well on Arimidex. Some of us are not. My GI took me off after 16 mos. as I developed pos. ANA and anti actin abs. It caused fatty liver and elevated lifts.

BTW I am stage 1.

Anne L Smith MSN

Artista928

Some people don't have terrible se's. There are 3 AIs so if one is horrible you can always try the other 2. Many people have found supplements, exercise, somethings to help with the se's. The question becomes if you are a high risk for recurrence or mets, would you rather deal with possible se's or to possibly go through this again? Like said above, give them a go. If all of them are debilitating with nothing helping the se's then at least go for Tamoxifen. If you're high risk and are ER+ then something is better than nothing.

wabals

Artista When a liver specialist tells you to stop for 3 mos. that is what you do.

Amazingly 4 days after I came off arimidex, my joint pain was gone. So many people also have abnormal liver function tests and fatty liver. Arimidex causes inflammation. And liver inflammation can be very serious. No not everyone gets those side effects but some do

Artista928

My bad, didn't catch on to the liver issues..

SJI

I see the oncologist next Monday - finished radiation last week of June. I am 99 percent sure I will not be taking any hormone therapy. I'll listen to the doctor but doubt he'll convince me. There are several reasons behind my decision. Estrogen is needed for a lot of bodily functions. I'm losing weight to lower the estrogen produced by my body. I had a hysterectomy 10 years ago. I'm 64-years-old and don't want to spend time not feeling well. I live alone and am self-employed so trying to keep going while dealing with side effects is not something that is really possible. I don't think enough research has been done on the effectiveness with lobular carcinoma.

Other concerns are possible bone loss since I already have osteopenia of the lower spine. I am also concerned about interactions with anti-depressants.

I realize that not everyone gets side effects and that there are a variety of generics to switch to. But I'm more worried about the effects from the loss of estrogen. Also I'm ready to move on. I know that sounds ridiculous but I want to put this behind me except for the checkups. I know this is a risk, but I think it is a relatively small one.

So anyway, that's my reasoning and my plan. We'll see what the doctor says on Monday.