Has anyone quit or reduced dosage of the hormonal therapy?
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KCKCKT5, mine only does routine blood work, such as blood count, metabolic profile, lipid profile, etc. Also bone density scans. He only orders other tests if there is a concern or complaint.
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KCK,
Read here:
Topic: Standard care post-treatment https://community.breastcancer.org/forum/72/topics/877612?page=1#post_5590109
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KCKCKT5 - when I was only doing hormonal therapy it seems like there was no screening of any kind, and I always felt frustrated. Just very cursory exams. I was told imaging posed a risk of radiation, and there are no blood tests for cancer screening. 15 months ago I went into urgent care with a very swollen arm, opposite side from where sentinal nodes removed, initial thoughts were clotting. No clot found, referred back to oncologist. Afger a couple of horrible months of scans and biopsies, DX came back as a new tumor in R-axilla. With Ibrance blood checks every month to make sure I am tolerating it. CT scans every 3-4 months to evaluate effectiveness of Ibrance. This is the 3rd BC for me.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
6/2019 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. 7/2/2019 lymphatic therapist recognized that there was something very wrong and sent me back to the DR.
8/2019 CT, Breast/chest, neck/thyroid ultra sound
9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for) Taking Ibrance and Arimidex
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BlueGirlRedState, was your cancer in the opposite axilla thought to be a recurrence or a new primary?
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WhatJust Happened - Oncologist thought each cancer was a new cancer rather than a recurrence. But I have my doubts.
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BlueGirlRedState, thank you for posting your experience. I always find it incredible when someone gets a new BC after a MX, especially on the contralateral side. A recurrence I can see because of the change of lymphatic drainage after surgery and/or radiation.
The reason I have a heightened interest in this right now is that I just had an ultrasound of a lump in my left axilla, which is the opposite side of my BC. I'm still waiting to hear those results.
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Several of us have posted that we are on lower doses than 125 mg, usually because of low blood counts, other SEs, just not tolerating it. I have seen similar comments on AI and Tamoxifen. Have DRs discussed how well lower doses are tracked? If I interpret this abstract on Ibrance correctly, it sounds as if lower dose (at least during the initial cycles) is associated a shorter progression-free time. Any thoughts? I will post this link on Ibrance site, since several have commented that they are on lower doses than the standard 125 mg. Recently my DR also lowered my dose saying that studies showed there was no difference in 125 mg vs 100 mg.
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WhatJustHappened - my thoughts are with you, and hoping the lump is not cancer.
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Thank you BlueGirlRedState. I'm now waiting on the office to schedule a biopsy. I'd forgotten how much this waiting sucks.
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Hi Suzanne98, and all the rest of you. I could've written your first sentence myself--weight gain (quickly and substantially), joint pain mostly in my fingers and knees, and thinning hair. I'm starting to be concerned. I'm not interested in taking supplements to counteract these side effects so I'm not sure what's next. I switched from Letrozole to Arimidex due to weight gain and joint pain, and it's no better, and maybe worse. I'm not sure where to go next. These side effects are not severe, but they've impeded my life in ways that are not substaintial, but problematic and emotionally challenging. Apparently there's a third AI that I haven't tried yet, but not sure I want to go down that path either. What to do, what to do?
I was triple negative in 2017, stage 1, small, but four months of chemo, lumpectomy, four weeks of radiation. Only great thing about TN is no meds after. Then--surprise, damn--new primary on the other side in Feb 2020. ER+ PR+ HER2-, grade 2, 1.1 cm, invasive ductal carcinoma. So meds followed, damn it. I'm wondering what now to do. My thoughts are:
- Go back on Letrozole, perhaps one pill every other day;
- Try Exemestane (Aromasin), perhaps every other day; or
- Say screw it all and work on my weight and nutrition (I eat decently already so not even sure what I'd work on)
This is frustrating. Damned if you do, damned if you don't.
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Reducing dosage. Reading "The Cheating Cell" Athena Aktipis https://press.princeton.edu/books/hardcover/9780691163840/the-cheating-cell . She explores looking at cancer from an evolutionary view. Rather than trying to eradicate/kill cancer which might actually select for cells which resist treatment, she suggests "managing" the cancer which might select for cancer that is less prone to develop resistance. One approach is "adaptive therapy" where the cancer is kept at an "acceptable" size without too much harm/risk to the patient. She also suggests "faking" described in her book and here. the cancer https://chemoth.com/metronomic/adaptive-chemotherapy... This article suggests that while a nice idea, we are not there yet. https://www.oncozine.com/personalizing-cancer-treatment-why-adaptive-therapy-isnt-there-yet/ . In some sense, adaptive therapy makes sense, can we really expect to eradicate? At the same time I want it gone gone gone, not just "manageable". She also describes, briefly, how we are abe to successfully treat and eradicate some types of cancer. I wish and hope the same for breast cancer. She is an evolutionary biologist at Arizona State University.
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BlueGirlRedState, those are interesting articles-I'll have to spend some more time reading them more closely. It makes me wonder what will actually come to pass in our lifetimes. Since I have a germline mutation, I wonder how that plays into it? Very interesting concept.
JLBinPDX, I feel you. Wish there were some answers, but there are not any that I can find. My recent scare shook me up sufficiently to make me want to stay on the arimidex. My biopsy was benign, but another area showed up on a CT scan afterwards (cancer side this time) that they did not biopsy. Probably fat necrosis or scar tissue, but the report says that recurrence can't be ruled out. And on it goes. I thought that I'd be able to move forward and put this all behind me but I can see that these little scares will probably keep popping up from time to time. So I'll take the damn pill until I can't take it anymore. Then we'll see. (Edit- I still only take it every other day).
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JLBinPDX, I tried aromasin and am on arimidex every other day, and am debating on trying letrozole. I've tried a bunch of supplements, but nothing worked so not taking them anymore. I'm on Celebrex, I think it helps a little. aromasin gave me constant headaches and my whole body swelled. But I was on Lupron and now I'm not, so I might try it again without even telling my Dr. The other option is brand name instead of generics. I'm afraid to keep asking for changes, they treat me like I'm a pain in the neck. I'm afraid the Dr. will think I'm crazy and annoying, he already does. I just don't feel like a priority. It is a local MO, not a BC specialist. He has patients much worse off than me, much older than me. Always telling me how good I "look" and how I "breezed" through chemo. This is worse than chemo!!! No meds is not an option for me, I'm too scared. I see tamoxifen as my final choice. I don't know what to do either.
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I decided to ease into the Tamoxifen by taking half the dose (10 mg) for a while. That was 6 months ago. I've told my MO and he hoped that I would work my way up to 20 mg. The joint pain is horrendous. My hands don't work well in the mornings any more. My 12 year old has to open water bottles for me in the morning. As the day progresses, I do feel better but if I sit for too long, it is like my body is made of cement when I stand up and walk. The insomnia is horrible, too. I think it's mostly caused by the Tamoxifen and also the joint pain. Each time I roll over, my shoulders or left femur manage to wake me up with pain signals. I see my MO again next week. I don't think I can take 4.5 more years of this. I have lost 23 pounds since starting the drug. I play tennis 3-6 days a week and typically don't eat dinner because I'm just not very hungry. Tennis is the one thing that's gotten me through the lows of the diagnosis and treatment. I can't imagine the day when my joints hurt so bad that I can't play any more. I will definitely stop the drug at that point.
Hang in there. I've read that about 50% of patients get off the drug due to the SEs. And I can completely understand why.
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Cricketdog - what is happening to you is what I am terrified of happening when I have to start Letrozole (Femara) in 3 weeks. I ride horses (used to play tennis but don't have anyone to play with anymore, and my knees and serving shoulder are shot anyway) and if I hurt so much I can't get on then I won't take the drugs either. I already told my husband if the drugs cripple me I won't take them. I need to have some quality of life and if I can't do anything that I enjoy then...
Looking at your treatment, why did they give you chemo for early stage hormone positive tumor with no spread to nodes? My MO said not only do I not need chemo, but it is not very effective at all on hormone positive cancers, unless they have a high mitotic rate.
Are you taking tamoxifen because you are not menopausal yet?
Good luck to you, this is not a fun path.
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Recently I read that prostrate cancer might start producing its own testosterone even though an Rx is used to stop/block production. Has anyone heard if ER+ cancer might produce its own estrogen in response to AIs or Tamoxifen? I did not know this before seeing my oncologist earlier this month, so did not have a chance to ask her. My estrogen has never been monitored before/during Tamoxifen or AI. When I ask, I'm told that monitoring estrogen is not part of the standard of care. So it sounds like I could pay for a test with the usual blood draw for WBC. I will post this on other AI and tamoxifen threads, sometimes it seems like information is scattered.
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Cricketdog, Do you split your 20mg tablet? After awhile I asked for the 10mg tablet and that seemed to work better for me. In all honesty I never told my MO that I wasn't taking it twice a day. I recently changed doctors and she told me to try it again. I have been doing well on 10mg tab twice a day. I won't go back to the 20mg tab. Another posted that she takes mini holidays from the Tamoxifen when she has a running competition. I have done that when I had hand/finger or back pain and it seemed to reset my tolerance. Insomnia is terrible. Best wishes.
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arabiansrock, don't presume that you will have extensive joint pain with Letrozole. The side effects are individual to everyone. Some people experience severe joint pain, others don't.
According to the BIG study, approximately 25.4% of Letrozole users had grade 1-2 joint pain (arthralgia; 4th down on the list below)and 3.4% had grade 3-4 (i.e. severe) joint pain.
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Beesie
Thank you for posting that table of study results. That is reassuring that I at least have a chance to maybe tolerate it decently. It is kind of hard to figure out what drugs or treatments are like when it is mostly the unlucky minority posting looking for help. It does make it seem like that is what we should all expect. I know that I have (so far) had a really easy time with radiation, so I am trying to post some positive comments about my experience so that newbies can see that the experiences are very individual. For example, just being in the radiation room seems to stress some ladies, for me that is no big deal. However, show me a needle and I get ready to flee so... We all have things that bother us.
You are a really great resource Beesie, thank you for helping all of us.
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That's what I always said about radiation too, arabiansrock. Perhaps it was so easy since it came after really awful chemo. But radiation after my second primary, too, was no big deal.
This AI shit, now that's not fun. I was on Letrozole and suggested a switch to Anastrozle to try to eliminate the weight gain, joint pain, and hair loss SEs. Well, Anastrozle is not better and perhaps worse. I check into Arimidex today as I've read that that real thing has fewer SEs than does the generic Anastrozle. I was blown away to learn that it's $4,100/3 months--and that's with good insurance. Awwwkkk! I'm going down to one every other day or Anastrozle for now and see what my MO thinks in a month or two. I've never been of medication my whole life so this is new and not happy for me. It's all tolerable, but who wants to accept the extra 20-30 pounds and have hurting fingers and knees every day! Not a happy girl over here in rainy Portland, Oregon.
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I take letrozole and have periodic bone joint or muscle aches as well as hair loss which was already thinner after the chemo. My first question is if you know any solution to minimize hair loss. The next question is how a doctor can know if bone pains or aches are related to anti hormones or god forbid a bone cancer. The blood tests determine that
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Arabiansrock - I went through chemo because my Mammoprint results came back with a high probability of cancer recurrence. I don't want to scare you but I told my MO that I'd rather go through chemo again than feel like I do on Tamoxifen. But, everyone is so different. As long as I keep moving, I can manage. It's sitting still for extended periods that makes it really bad. Claritin and the other anti-histamines didn't help me at all with the Neulasta shot. It brought me to my knees so I may just be predisposed to bone and joint pain. I had just turned 50 at diagnosis so I was pre-menopausal, and hence the tamoxifen and not an AI. Hoping you get through it side effect-free.
Flashlight - I do split the pills in half. The first time I took one, it was in the morning and I did not sleep at all that night. I've found that taking melatonin about 25 minutes before I take the tamoxifen gets me at least a couple of hours of sleep. I take it just as my eyes start feeling heavy. I may try to ease into 20 mg over a weekend. I am hypothyroid and have never had trouble sleeping. What I would do for 8 hours of uninterrupted ZZZs!
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Cricketdog - I just had to comment since we seem similar. I had a left mastectomy so no radiation but my mammaprint came back high so I am having chemo. Taxotere and Cytoxan. The Neulasta really did me in too and the Claritin did not help. I hope my 2nd chemo goes better and the doctor does something so the Neulasta doesn't hit me as hard. I had blood work today and of course my white blood cells are great! It worked. I haven't started AIs yet but I don't want to either. I am 60 post menopause. I never had trouble sleeping but I do now.
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Marie914 - I too hope your second round of treatment goes better than the first! The only thing that helped me with the Neulasta pain was narcotics. My MO didn't question my request for some relief. It was absolutely horrible. I could hardly walk up the stairs without feeling like someone had taken a hammer to my feet and ankles. I only had to take 2-3 pain pills with each treatment -- enough to get me through the first 2 nights after the Neulasta injection. I also filled two long socks with rice and blasted those in the microwave. I would put the socks on my hips, thighs and ankles to help ease the pain -- they offered quite a bit of relief and can wrap around your joints really nicely. HUGS!
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thank you cricketdog! I appreciate some one that had the pain responding
I have some narcotics but last time I got so constipated using them I am afraid to use them. But I might have to.
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Marie914 - that is definitely a side effect. The doctor suggested Senokot for me and it worked like a charm without all of the other side effects that typically come with constipation medication. I was so ill from chemo that I couldn't drink miralax with any fluids. The thought made me so nauseous.
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How many senokot did you take a day? 2 in the morning 2 in the evening?
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Letrozole side effects seem to be building up for me. At first it was a little joint pain here and there, insomnia, etc. Now I have some skin lesions, hand and foot cramps, burning in the elbow and hair loss, but all still manageable. I need to do more to counteract the SE, like more exercise. YouTube yoga is helping a bit.
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Hi....Just started Tamoxifen 20 mg 5 days ago, and I am already having terrible joint pain. Is that possible after only 5 days? If so, will it get better/worse? Dreading this if I am going to be aching all the time.0
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Amyb131 yes you can get a range of side effects. Some will get better over time, perhaps even disappear. You kind of have to slog through it a bit and see what you can manage and what you cannot. Some things to know - if you are a person that gets a lot of side effects from the medicine, sometimes a change of supplier can be helpful. The theory is that you might be intolerable of some of the inert filler ingredients in the tablet. Some ladies have ramped up to full dosages (I didn't do that) starting at a lower dose for a few weeks then increasing. What is working amazing for me is to take 10 mg twice a day. It has been a game changer. My MO's theory is in a 24 hour period my peak concentration is lessened by this method thus reducing some of the side effects I was struggling with. Good luck, communicate with your MO about side effects that are intolerable so you can discuss options.
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