Has anyone quit or reduced dosage of the hormonal therapy?
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JRNJ, if you see this message let us know how are you doing and if you had your test yet.
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anyone developed chronic constipation under Letrozole? The prune juice and lax-a-day are my everyday life.
My hair is still so thin and I do not know if it is the lingering effect of chemo therapy or Letrozole. I am using Nioxin with no difference.
Bonne loss I am trying to stop by vitamin d and calcium but aches still there. If there other bone strengthening natural remedies there, please advise.
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I've been on Tamoxifen for about 8 months. I was put on after all my rounds of chemo and take it along with Keytruda, Perjeta, and Herceptin. I have had a lot of side effects and they're just getting worse. Of course, I've discussed this with my oncologist but she insists that I need to stay on Tamoxifen or else take one of the substitutes. I think the side effects for the others are basically the same since they mostly use the same pathways.
I've been taking a reduced dosage recently and I think that helps. I know the risks but my quality of life is important too. My vision was becoming very poor and I was getting more frequent vitreous detachment episodes. The foot and leg cramps woke me frequently through the night. And I have a lot of issues with itching and rashes which, again, woke me up. The lack of sleep was really beginning to wear me down.
I'm a little concerned about my tumor markers as they're starting to climb but, in the end, we all have to decide what is best for us individually. I'm going to continue to take a reduced dose until I get worried enough to bump it back up..
Margun -- I'm not sure this will help but I take Nexium for stomach acid problems and that has always kept the bowels moving. (This isn't a problem for me now as the Perjeta gives me diarrhea.) Anyway, the Nexium might be worth a try.
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Hi Margun, My friend swears by magnesium to keep her from being constipated. I take vitamin K2 with my D3 to help my bones. My sister has to have Zometa infusions. Some take Fosamax weekly. Molly5678, Nexium is great if you have an ulcer, but long term it isn't good for your bones. It may affect the absorption of calcium. My doctor said to take pepcid and if that didn't work to take omeprazole. I take magnesium at night for the leg cramps and try to increase my water intake. What did your Ophthalmologist say? These drugs make your eyes so dry. I have been taking fish oil and it seems to be helping.
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Hello Margun - Re your bones, I think the calcium and D3 are good of course, but you might want to switch to real dried prunes rather than the prune juice, as they help both your bowels and your bones. I'm just not sure if the juice does the same as the actual dried prunes do for your bones. The researchers seem to have settled on 5 or 6 a day for improved bone health. Ruthbru who posts on here has posted a lot about prunes for bones. She says she got through her years of Letrozole with no bone loss by eating the prunes every day and never took bisphosphonates. I started on Letrozole with osteoporosis and the oncologist started talking about bisphosphonates. I wanted to avoid them at any cost, so went the prunes route. After one year, they did a new Dexa scan and like Ruthbru, my situation had not changed at all. Although I had osteoporosis, it was no worse than when I started. All I'd been hoping for was "same or better" and I at least got "same". If you google "prunes and osteoporosis" stuff will come up. They won't do another Dexa for 2 years now, but hoping with all I've got, that things will stay the same or improve during that time.
I don't know if I would call what I have "chronic constipation", but Letrozole has indeed given me "chronic bowel problems" and I have so far not been able to get a handle on what helps and what doesn't. I got worse with things like Pepcid and Omeprazole. Milk of Magnesia helped after days but not before having all sorts of pain and exhaustion along with it. I don't think I'll ever take it again. In fact, I've become scared to take anything over the counter lately, because of my experiences with those things. Along with the daily 5-6 prunes, I also drink pear juice every day, as that too is a "natural" laxative. Between the two, I at least don't feel "constipated", but I continue to have all sorts of feelings of fullness, bloating, gas pains, and more that all started with the Letrozole. The doctors just recommend all that over the counter stuff and it doesn't work for me. It all seems to make me sick and I feel worse. After trying the Pepcid and Omeprazole I wound up in the ER with an electrolyte imbalance (much too low potassium and sodium), so won't be doing those over the counter things again. I've noticed that a lot of them contain calcium, magnesium, etc., which are electrolytes that all affect one another in some way and adding them into your system can really mess with electrolyte balances and even cause harm.
The side effects lists on the internet for letrozole will note "digestive problems" as a side effect, but they never specify what kind or what it is that letrozole does that causes the problems - they just say to "tell your doctor", etc. In my case again, those doctors just push the over the counter stuff. If you google "low estrogen symptoms" and things like "does low estrogen cause digestive problems" you get much better info, and yes indeed, low estrogen causes digestive problems, and one of those problems is just a slowed down digestive system altogether. Without the estrogen, other substances in the body seem to increase or decrease, depending, and then everything just gets thrown off again.
Also re your bones: Extra virgin olive oil, first cold pressed, has also been shown to improve bone health, but it has to be the extra virgin first cold pressed. Like with the prunes if you google "olive oil and osteoporosis" and similar things, articles will come up.
I wish you well with this and hope you find a solution, but I have yet to find anything that helps my digestive problems and I don't know if I will as long as I take Letrozole.
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Because prunes contain sorbitol some people can have the side effect of intestinal bloating, gas, mild nausea, moderate stomach cramps, and sometimes vomiting. They give you a good dose of potassium so if you drink a lot of OJ or eat bananas you might want to monitor. They are delicious!
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Flashlight - Interesting what you have to say about the prunes. They do have sorbitol as does the pear juice that I drink. I have the symptoms you described re the sorbitol for some, all the time. The thing is, I started eating the prunes in December of '19 in anticipation of starting Letrozole in January of '20. I didn't start getting the stomach symptoms until about June or July of '20, otherwise I might think it was the prunes after what you described. I didn't start drinking the pear juice until the fall of '21. I just have no idea what, other than letrozole, could be doing this. I even reluctantly caved and went and had an upper GI that they kept recommending because of all my troubles. They found absolutely nothing wrong with my stomach. I can't help but think that after 6 months of Letrozole, my digestion just slowed down and can't process everything properly now.
Foods like bananas, prunes, etc. do have potassium, and more than most foods, but it really isn't all that much when you see how much you need every day. A banana has something like12% of the daily requirement. I read that you'd have to eat something like 7 bananas a day to get all the potassium you need. When I wound up in the ER they told me to eat more potassium rich foods, so I've added more bananas, coconut water, acorn squash, and potatoes to my diet (in addition to the prunes) and I haven't had those low potassium symptoms that I kept getting since then. It really is all a delicate balance and anything out of the ordinary can mess it all up!
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Flashlight - Just wanted to add that the more I think about it, the sorbitol intolerance symptoms you mention really do fit pretty well with my chronic digestive problems. Just not sure why it would have taken 7 months after I started eating the prunes to show up. Now I'm beginning to think it is sorbitol intolerance or Letrozole or both, but again just don't know why it took 7 months of letrozole and prunes for the symptoms to start.
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Hi ThreeTree, It is a mystery! I just read another post where she said she takes magnesium to help with digestion issues. My MO didn't have any input on this. I asked my PCP and she was more helpful, plus this site had a lot of information on supplements. Maybe you could do a test and stop taking the prunes and juice for 2- weeks and see how you feel? After reading more about it I didn't realize how much sorbitol is in many of the fruits and veggies we eat. Maybe you are getting too much? Did you have chemo/diarrhea or take cardiac meds? Is that why you had a low potassium level? Hope you find your answer and feel better.
I take Magnesium Oxide. It's used to treat constipation as it has a laxative effect on the body. You can also use it to reduce the symptoms of heartburn or acid reflux disease (GERD). The citrate is easily absorbed and has more of a laxative affect. I tried the glycinate and it didn't work for me. It did help with sleep. The oxide helped me the most with the leg cramps. Everyone is different.
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Yes dehydration and constipation is a real side effect from hormonal therapy. The supplement I take for my bones has a probiotic/ magnesium/ calcium in each dose (day and night) and I think thats what helps with constipation for me. I take 5000 IU of liquid D3 every other day. I do remember buying smooth move tea and Senna tea to help me make a bowel movement too.
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Jinx and Flashlight - Thanks for your input, it is much appreciated. By the time I had had the upper GI, in which they found nothing wrong with my stomach, I had tried eliminating certain foods and supplements for a week or two at a time, thinking those various things might have been the source of the problem. I finally decided that I could not associate any of the things I had temporarily eliminated as a test, with the digestive issues. I couldn't connect one single food or supplement that seemed to be the problem. I did not however, try eliminating the prunes, because I'd been eating them just fine for about 7 months already and they were supposed to be helping my bones, so didn't want to stop. I also thought that if some of my problems were constipation, the prunes were helping. I might just try dropping them, along with the juice, for a week or two now to see what happens. Just scared I will wind up constipated.
At the time of the upper GI I told the gastroenterologist who performed the procedure that I was coming to the conclusion that it was all just a letrozole side effect and he said that he thought that just might be the case, so that too has had me thinking it is just a hormone treatment side effect, as low estrogen is known to slow down and mess up digestion. I took his opinion a little more seriously than I might have others', because his bio said that he used to do all of the GI work for the major cancer center here in my city and I thought he might know more about the situation than most. I was randomly assigned to him to have the procedure done, but I was glad he turned out to be someone who had worked extensively with cancer patients in the past.
Jinx, I will check out your bone support product recommendation - thanks for it!
Flashlight, I've heard a lot about magnesium, but it too is an electrolyte and I'm concerned that adding any beyond diet might throw off my electrolytes again. I just don't know what causes the problem. The medical people insist that it is usually diuretics that are the cause in situations like mine and that makes sense, except that I don't take any diuretics. I do drink green tea daily, but not that much. I've also seen a study where the researchers stated that they had never seen where green tea alone would cause major dehydration and electrolyte problems, but only when combined with other medicines like diuretics. I'm still at a loss there, but have found that the increase in higher potassium foods has helped, and I haven't had to go to ER feeling horrible and just to find out it is dehydration and an electrolyte imbalance for a while now. I noticed though, that I had had this problem through chemo and more - just frequent low potassium and sodium levels. I even began to wonder if I was drinking too much water and if that wasn't the cause for the electrolyte depletion. Everyone keeps telling you to drink more water and eat more fiber, but all of that can have it's own problems too, it can be overdone. Digestive and electrolyte. Like Flashlight says everyone is different, and I'm finding that we all have these delicate balances in our systems that can be upset by just small changes.
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I have the total opposite problem! I am eating a cup of mixed nuts at night which seems to help but not always .Also take 1 or 2 fiber pills. If I go out to eat I worry if there will be a bathroom close by. My SIL is having the same problem due to her chemo. We avoid greasy foods. If it ain't one thing it's another.
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Lilyishere, thanks for thinking of me. I often feel like everyone is sick of hearing it and they think I am a hypocondriac, especially my husband and kids. Good news/bad news. My thryroid biopsy came back benign. I freaked a little because they saw hurthle cells, and I read that type of cancer can't be conclusive from a fine needle biopsy, but Dr. does not seem concerned. Meanwhile I still have a huge swallowing problem and a migraine headache. I have to wait til 6/30 for my throat swallow test. I think I know what it is. Two of my CT scans said I have a hiatal hernia, which no Dr. has ever discussed with me. But fits all my symptoms and makes sense that radiation, DIEP and later steroids would have aggravated the condition. I also just realized my January CT in the hospital also showed my kidney stone but no one told me, and I learned the hard way after 2 visits to urgent care and one to the ER. The horrible medical care gives me so much anxiety.
Getting back to this topic, I stopped my letrozole For 2 weeks so I could figure out what side effects I have without it, I thought I had thyroid disease. Now I am convinced it is a hiatal hernia, but better that than throat cancer I hope. The only side effect I am missing is acid reflux. And my cholesterol is off the charts, LDL 197, but I can't focus on so many problems at a time. I feel stopping my statins has helped my arm and leg pain, so am in a quandary about that too. Cardiologist tried to get me a new med, but insurance denied it. I can only fight one battle at a time. Urologist said you have too many wheels spinning at once. And when I found out thyroid was benign, I booked a rafting trip in the grand canyon for 8/20, now I'm concerned I might need surgery anyway, either that or I'll be so miserable I won't enjoy it if I put the surgery off. And I dread starting letrozole again to add agitation and more insomnia to my misery.
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Hi JRNJ, I'm glad to hear that it was benign but sorry to hear that you're suffering so much. I understand the agitation - that was one of my main side effects with anti-estrogen therapy. I hope that you get relief!
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JRNJ, I'm so glad to hear that the biopsy was benign. I hope that can alleviate some worries. I totally understand what you mean about how you feel like people are sick of hearing about your health. I think my family feels the same, so I don't tell them everything anymore. Thank goodness for these forums where we can put it out there and get it off our chest.
I hope you are able to get some answers from your swallowing test this month and that there is something they can do to make life more comfortable.
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JRJN - have a fantastic raft trip through the Grand Canyon. My brother just did that and said it was fantastic. Hoping for next year. 2 years ago the planned trip was cancelled because of covid. This year I had to cancel because my cancer blew up.
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orangeflower, whatjusthappened and bluegirlredstate, thanks for the support!!
bluegirlredstate, so sorry you are dealing with cancer again. Hope you can get it under control.
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Bluegirlredstate: Sending u good thoughts. JRNJ: good news! I just want to get next month visit with onco over. Feel like my anxiety level is rising everyday. I feel like summer is moving too fast but I have appt next month and in August and I just want to know the future, OK I know my dx isn't that bad compared to some.... but I just feel,,,I don't even know, Some days are good and others not so much, I wish I had more energy. Going camping with daughter and grandaughter next month to a wonderful campground but lacking the energy to pack shit up etc. Staying in a non electric site so more to drag with us. Tent camping. I'm tired but ashamed to say so.
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KID1919 - Hope you have a wonderful camptrip. Maybe your daughter and granddaughter can do most of the work getting set up so you can relax and enjoy the beauty of the outdoors. Planning on escaping myself to avoid fireworks, which terrify my dog. we will probably have to go several days early to secure a site, with the 4th landing on a Monday. There are so many trails near where we are planning and even a small lake. Hopefully it won't be too hot.
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It's great hearing about others going through this process of questioning around hormonal therapy. I have been on Tamoxifen for 8 years. Last week when I talked to the NP, she said my chart prescribed 7 years. I do not remember my MO saying 7 years- she always said- keep chomping the tamoxifen. We discussed but made no decisions.
Anyway, I have decided to take a tamoxifen break for about a month to see if some of the symptoms subside. I will meet with my MO in July and discuss further. I don't have terrible symptoms, and I manage them, but I am worried it's taking a bad toll being on it so long. Some symptoms - constipation- Magnesium tablets- not capsules are my best friend;- skin rash- that I have connected to a new gluten sensitivity- leg cramps- especially after eating sugar, refined flour like white pasta, or drinking wine- magnesium also takes care of those cramps as well. Lately I have had a some prickling in my feet which I think is neuropathy- never had it before and vitamin B complex seems to take care of it. I take Biotin for the hair. Vag dryness- coconut oil helps- doesn't solve. I also drink lemon water and that helps cut the acidity in my body. But I was premenopausal when I went into this , and post when I came out. So I really don't know what is just me, and what's tamoxifen. So that's what I want to find out. I live a really good life- and lately I've taken my exercising up a lot, hiking, biking, running so I know I can handle the tamoxifen right now.
I just got giddy when I heard the 7 years.
But when I see the question above, Will I regret stopping it if the cancer comes back? Absolutely. 100%.
If I had terrible unmanageable side effects, I might feel differently. That's not where I am. So I'm afraid to keep taking it because I'm worried about longer term issues, and I'm afraid to stop taking it permanently.
I've been off of it a week, so it's too soon to sell how this holiday will play out. I'll probably be back on it in a few weeks. I will learn from this experiment, though I'm not sure how much I can learn in this short time. And I will see what my MO says.
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Bluegirlred: I started going thru camping stuff and did feel better. LOL. Everything needed washing as we never used it last year. Have a wonderful time! Someone pointed out that people with PTSD have a hard time with fireworks... no doubt. Someone came back with the comment with "grow up".( small town newspaper) Sad because this was a veteran that said it upset him. I will enjoy nature. My SIL is lending me her porta potty as I have to get up during the night and don't want to hike to the bathrm. It's enclosed in a little tent. I remember using it at a party, drunk and almost falling thru the darn thing but it sure will be handy. This blog has kinda turned into a space to just share thoughts other than we feel like shit from our meds and i'm glad. Also, I'm going to stop whining.
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Thank you for these thoughts. As a retired, basically healthy woman I’m hesitant to mess with my already low estrogen too. I’m just post-SMast, non-recon surgery and feeling well enough to travel again. It’s such a tough decision to add drugs to reduce recurrence by 5%! Seems illogical. I’m supposed to begin Aromatase next week. Prescription sitting at pharmacy now. Prayers for wisdom please! Thanks for your discussions!
B.
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KID - I think I will pack the never used porta-potty. We even have one of those tents which we have used for showers. If we are in the dispersed area, I would probably use the woods for a midnight pee rather than deal with the outhouse. Even in small campgrounds, the outhouses are not very welcoming. It is times like that I wish I were a "pointer" rather than a "setter".
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BlueGirlRed..I agree. Usually at night I will use the bushes if there is some cover. I am not sure how far away the bathrms are from our site so taking SIL potty and tent that goes with it. I would like NOT to have to get up at night but I know that is NOT going to happen! If you haven't camped there before it's a good idea to take it with you. LOL my grandaughter who always has to poop at our house when over complained grandpa's bathrm doesn't have wipes in it. She said " Am I suppose to wipe and wipe?". I am old enough to remember when wipes weren't even invented. I hope you have a wonderful time on your trip.
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monwriter - is Biotin was good for your hair?
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Yes, Biotin is good for hair, skin and nails. My hair is already very fine, so I do what I can! It looks fine when I blow dry it but it is thin. I feel like when I'm on Tamoxifen there's a point once a year where I shed a lot of hair/ I don't know if it's my imagination or if it's true.
I've now been off tamoxifen a week and a half and I feel fine physically. Mentally I"m questioning the decision of whether I want to go off. It is technically a "break." I feel my body feels better but I don't know really. But I"m scared of recurrence so we'll see what MO says in a couple of weeks.
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momwriter, how many years have you been in hormonal therapy? It seems like 8 years, isn't it enough?
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LillyIsHere,
Yes, 8 years. I think the bar for hormonal therapy is always moving- they used to say 5, now for some it's 10, and there's no exact protocol for Her2+. For me it's a gray area because I had lymph node micromets and LVI and I'm strongly ER +. Mine could be more driven by my Her2 status-, or by the ER+-- they don't now. I'll meet with my MO in a few weeks and will see what she says. But I'm enjoying being off of it right now!
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My saga continues. I still have a lump in my throat when I swallow. Test shows I have a cricopharyngeal bar in my throat, which apparently is caused by the hiatal hernia/silent acid reflux I have that none of my drs. told me was on my CT scans for 2 years, that is either caused or worsened by dmx, radiation and DIEP. ENT said today, it is not bad enough to do risky throat surgery and to see a GI dr. for the hiatal hernia. Why didn't someone tell me that 2 years ago when it first appeared or even last year when I complained about the lump during radiation!!!! And NO recommendations for my misery, not even the ones I read about online related to acid reflux. That's what you get when you call a dr. and can get in that day. And I was off letrozole for 3 weeks and sleeping well even with the lump. Started it again a few days ago and haven't had REM sleep since, am agitated and migraine is back. I really don't think I can take any more. It's like taking poison I just can't do it. But I have to be a little positive. I'm glad I don't have thyroid or throat cancer.
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JRNJ, thank you for keeping us posted. Do you think all these symptoms are worst because of letrozole? I am sure other cancer treatments had a big hit as well. I can see you are approaching 2 yr since your diagnose. Mine was yesterday and the pains, exhaustion, and worries in the last 2 years have gone through the roof. Still, I am grateful I am alive (and miserable)
Cheers to our 2 years and many more!
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