Side effect worries
I was diagnosed with stage 3 estrogen positive breast cancer in 2021. Had chemo, then mastectomy, then radiotherapy.
Now 3 and half years of taking Anastrozole Hormone therapy and I am beginning to struggle with stiff aching back and hip pain. I was told to take Calci-d and admittedly have not really took it as again side effects with that. My stomach feels bloated and constipation sets in.
I have my 4th follow up appointment in couple of weeks and should I ask for bone density scan to see what effect the Anastrozole has had on my bones as I am scared that maybe I am on the brink of getting osteoporosis as the pain now is constant every day. I have only had one bone density scan before I started the hormone treatment in 2031 so should I have had more by now?
I really don't know what to do for the best as hate all the side effects of all the treatment.
A lady I met who had the same diagnosis as me has just died as her cancer kept coming back and unfortunately the chemo she had affected her liver and she died from liver failure a month ago. This scares me as it wasn't the cancer that killed her in the end but the effects of what the treatment did to her.
It really is a very scary thought going forward of what is the best thing to do. Of course I am glad the cancer has gone but even after a whole years treatment I am still suffering with the effects of the hormone treatment just hoping it will keep the cancer away.
I am going to try and take half of the Calci-d daily and see how I get on with that but obviously it probs won't be as effective in helping my bones. Maybe any help is too late now for my bones.
Also If they offer to change my Anastrozole and I try another aromatose inhibitor I will still get other side effects and my consultant did say that Anastrozole was the best one to be on and wants me to stay on it but I don't know how much longer I can put up with the pain in my bones Without needing the help of another drug which will add further side effects.
They say they want me to be on hormone treatment for 20 years, is that really necessary. I have had 3 and half years so far but I know my bone health has definitely been affected after this short time. The thought of Osteoporosis is scary also as possible bone fractures really scare me as live alone with steep stairs so how I would manage with a fracture is unthinkable really.
I just do not know what to do for the best.
Tracey
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Sorry to hear what you're going through. How old are you? Are you postmenopausal yet? 20 years of endocrine therapy sounds excessive. Postmenopausal women here are usually started on an aromatase inhibitor rather than tamoxifen (especially if they are at cardiovascular risk because tamoxifen can cause blood clots). The usual protocol for AI is 7 years (if you started on tamoxifen, then 10 years on endocrine therapy of both types). I was allowed to discontinue my AI (letrozole) aftr 6-1/3 years because my cancer was Stage IA with a low Oncotype DX score; and my oncologist said the bulk of an AI's benefit has occurred after 5 years. Various side effects were also a factor.
My oncologist chose letrozole because her research indicated that it was the most effective of the AIs in preventing recurrence—and also usually the cheapest. FWIW, I had my first bone density (DEXA) scan the morning before my first radiation treatment, before beginning endocrine therapy—which revealed I was already ostopenic.
Are you on any bone-preserving medications (oral or infused bisphosphonates or Prolia injections)? Over here, bone-preserving meds are routinely prescribed for anyone on an AI. I couldn't take oral bisphosphonates (due to GERD) and at the time my insurance wouldn't cover Prolia, so I had a Zometa infusion, which gave me fever and bone pain for days. Not long after, I turned 65 and went on Medicare, which does cover Prolia. I underwent the protocol at the time for osteopenia, which was two shots a year for three years, which considerably improved my bone density to the point where some areas were deemed "normal." Unfortunately, Prolia leaves the system by 6 months (bisphosphonates do last longer), so a few years after my last Prolia shot my DEXA scan showed I now had osteoporosis. The protocol for that is two shots a year for 10 years to life (and at my age, roughly the same length of time).
Bone pain is usually not a symptom of osteoporosis unless there is already a fracture (it can also be a symptom of bone metastases, but your docs should rule out the less dire scenarios first). More than likely you are experiencing osteoarthritis—the stiffness is telling. The pain you are feeling is most likely in your joints, not your bones.
Your spine is made up of a column of vertebrae (bones and discs surrounding the spinal cord) which have joints that deteriorate with age regardless of whether a medication is accelerating the process. Arthritis is already possible during perimenopause and more common after menopause whether or not you are taking endocrine therapy to suppress production of estrogen, but is also a very common side effect of aromatase inhibitors (probably the most common side effect). It's not related to osteopenia or osteoporosis, but can be confirmed with x-ray. An x-ray of the spine can reveal arthritic facet joint changes, and an x-ray of the hip can reveal deterioration of cartilage of the joint's articular surfaces. Both are osteoarthritis and both manifest as pain and stiffness.
I don't know how care is covered under the NHS but here in the US, Medicare (and most private insurance) covers x-rays in the event of joint pain to confirm a diagnosis of arthritis in the spine and joints in general. And on this side of the pond you should definitely have had a DEXA scan, ideally just before starting endocrine therapy to establish a baseline—and then every two years. By that schedule you're already overdue. Talk to whichever docs are handling your care. Over here, it's usually an orthopedist (referred by your primary care doc) who deals with osteoarthritis and an endocrinologist who deals with bone density. If you have a medical oncologist in charge of your breast cancer care, s/he can order these tests and/or refer you to those specialists.
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Thank you for the information.
I have my yearly follow up appointment in couple of weeks and I am going to ask if they can do a DEXA scan. I did have one at the end of my initial cancer treatment but nothing since so yes probs overdue now.
I was diagnosed at 47, then turned 48 during my first chemo treatment. I am now 52
I have had 3 clear mammogramms on my left breast so far so yes no reoccurrence. I had a right mastectomyvand lymph node dissection. I have been left with lymphodeama and ancillary web syndrome in my right arm so that is uncomfortable. I have been given compression sleeve to wear.
I should have started taking the Calci-d 3 years ago to help strengthen my bones but have only been taking it on and off as do not like to have side effects affecting my stomach. I was also offered bisphosphonates but again was scared of side effects and also could not swallow the tablets that they gave me.
I have never been a person to wanna take medication for anything so I am finding it difficult to allow myself to take anything. I have been taking the Anastrozole inhibitor for 3 years more or less every day as my consultant says its the best one to be on to keep the cancer away but of course it will affect my bone health.
I am worried if ever they want me to have infusions as again do not want flu like side effects but it says that will definitely happen with first one. How long did yours last, were they bad?
All I know is that I now have discomfort every day in my lower lumbar back and hips so I am assuming the Anastrozole has affected my bones but obviously will not know by how much until I have a bone density scan.
I am so not liking this journey. I am so glad the cancer has stayed away but now all these side effects are so annoying and this journey seems like it will never end as I need to be on this hormone medication for possibly a further 7 years. Have you experienced tamoxifen as I think that is the one they want to put me on after I finish Anastrozole in another year and half. What side effects will I get then?
Yes i was premenopausal when I started this journey so obviously have been forced into menopause so its not even happening naturally.
It is all so annoying and has changed my life so much.
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Hi Sandy,
I’ve been following your fire and move and very soon move back, on “Older Women…” But life has intervened. I started to fall on Fathers Day, slammed into the dining room table, very shaken up.It turned out I had a compression fracture on T6. But it’s a pathologic fracture. After numerous scans, MRI, and a tortuous bone biopsy, I have a metastasis to T6 . But, of course, it’s complicated. All the cells in the biopsy were necrotic- no breast cancer cells. Dr. M believes the bone was seeded from the get go in 2019, that Arimidex killed the cells, but not before they ate away at the bone. All scans were clear except for MRI which lit up at T6. There could perhaps be a cell or two floating around somewhere and his assumption is that they would be BC cells because there’s nothing else on the scans.His plan: 10 sessions of radiation to T6 to help the fracture heal and to clear the surrounding area, Letrozole which I dread, dread, dread and a Zometa infusion every 3 months.
I obviously hate that this has happened. Have been in a state of terror. Dr. M is optimistic and encouraging , states that I will live as long as my cohort of 91 year old women and wrote in the aftervisit summary, “ I offered that overall survival for several years after diagnosis of breast cancer metastatic to bones is anticipated.”
Hate that this has happened!
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Oh, Judy, I'm so sorry to hear you have a bone met—but at least there are no other detectable mets anywhere else. I think the radiation is a good plan going forward, and probably the Zometa infusion (any reason why Dr. M didn't mention Prolia/Xgeva as an option?). I'm not so sure about going back on an AI, since with theoretical micromets (theoretical because they haven't shown up anywhere), IMHO it would be like trying to kill an ant with a Sherman tank. The last thing you need at 91—especially with a pathologic compression fracture—is anything that would cause or exacerbate osteoporosis. From reading everyone's experiences, though, I gather that letrozole seems to be gentler on the system—and cheaper—than anastrazole.
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hi ladies. I’m six months into AI Letrozole and have very bad side effects. I see my onc on Aug 20 but not happy about all the side effects I’m getting. Cough that won’t quit which leads to bladder leaks, excruciating joint pain when it happens. I have rash like marks on my arms just under the surface of the skin. Loss of taste buds it seems. Everything tastes the same bland. Major fatigue. Super dry mouth and a number of other things are are somewhat manageable. But when looking at quality of life I feel the side effects are interfering with that. Ugh. Not happy right now.
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You might ask your "pharmacy benefit manager" (aka "PBM") or the Canadian equivalent about a different manufacturer's version of generic letrozole. A lot of side effects attributed to letrozole (or any oral drug, for that matter) are really caused by the pill's inactive ingredients: dyes, binders, etc. Many of those "excipients" are known allergens (e.g., casein, vegetable-based dyes) or sensitizers (e.g., lactose, synthetic dyes). When I was switched to another version of generic letrozole (Roxane, then Teva, then finally Sunrise) with even fewer excipients than Novartis' brand name Femara, my side effects lessened—and none of them were classic allergic reactions or intolerances. The colored pills were the culprit (though I take other meds that are pink or blue without incident). The cough, rash and taste symptoms sound like those of allergies or sensitivities. Not sure about the dry mouth—so many drugs can cause that, or even dehydration or sleeping with mouth open. Sucking hard candies or chewing gum can help keep the saliva flowing.
Not much you can do about the joint pain, bone thinning, bladder leaks (even spontaneous), fatigue or things like hot flashes, weight gain (lowered metabolism), elevated LDL cholesterol, etc. They're not "bugs," they're "features" of AIs, due to estrogen deprivation which is the point of taking this type of med. As bad as they seem, they're better than letting ER+ micromets proliferate.
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thanks Chris. I’ll find out if there’s a different type here. Not sure there are options. The pain is excruciating having me out of commission for three days. Not ok by my books. I have a casein allergy which pharmacy is aware. Hmmm. Thanks for your thoughts.
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Casein is often used as a binder or filler in meds. My son would have a severe reaction to even the tiniest amount.
Some people have found they have fewer side effects with one of the other AIs, anastrozole and exemestane. Tamoxifen works differently by binding to the E+ receptors rather than by depleting estrogen. It’s a bit less effective and has its own set of SEs but some people find it more tolerable than the AIs. It’s very much something each person has to try.
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thanks Maggie. I’m hoping for a change. It’s the Apotex Letrozole. So no casein. But lactose is there. My side effects are all on the list of potential side effects. Sone are manageable others are not. Ten more days and we can see what to do. AI were the only med for my type of cancer. I’m also a nurse so I understand the biochemistry of the meds. But I also know what’s not tolerable. Fingers crossed a different AI will be better for me. I’ve spoken to my pharmacist buddies about this too.
I’ll post again when I’ve met my onc!!!
have a great week everyone.0
