Has anyone quit or reduced dosage of the hormonal therapy?
Comments
-
Bone pain, triggers finger, thinning hair, dry throat dilute drinking a lot of water , losanges and using alcohol free mouth rince . If anyone has a remedy against hair loss and dry throat, please let me know. Still if this is all the pill and no other more dangerous thing I am grateful. Hopefully it will not be worsen with time.
On the other hand to do not scare ladies who just starting, I know a lady in my in- low family much older than me ( in 60"s) who is taking letrozole for 4 years. She has zero se, nonne.I do not know if this is minority or majority but there are some people who have zero negative impact. I do not if the fact that she did not underwent chemo which weakens body has some influence too.
0 -
I didn't have chemo or radiation and this medication is difficult in my body. I do yoga and 1 hr walks every day, stay active with young kids at home, eat healthy because I love fruit and veggies, and still, anti-hormone medication is difficult for me. I was told to have breast reconstruction to feel "normal" and forget cancer but the side effects of this medication are the constant reminder of cancer. I am sorry I am venting today, not only unusual aches and pains but I have 6 month check-up with MO and Zometa infusion this Wednesday. What should I tell MO? He shrugs when I tell him all my SE of letrozole.
0 -
I've been off my meds pretty much since end of Dec for DIEP surgery. Took letrozole for a week in January than stopped for surgery. I've now tried all of them and was in crippling pain in my arms and legs. I need to restart when I'm am feeling better from surgery. Surgery was hell, but my arms and legs are actually better and back to "normal". I am hoping the surgery might help. I think I had lymphedema in my arms due to reconstruction failure 15 months ago. But I don't want to get my hopes up. Now I am debating which one to start backup on. I only took letrozole for a week, so didn't really give it a shot. but my MO seems to think aromasin has the least side effects. When I was taking it I was on lupron, so I'm wondering if I should give that one another try instead. I've searched the boards and can't seem to find a clear answer on which has the least side effects.
0 -
JRNJ, my MO said the same thing about Aromasin, and I started it last week. I actually started a thread wondering how people were doing on Aromasin, but didn't get any replies to it. So far I've just had more hot flashes and trouble sleeping, but it's early in the game. I had been off anastrozole since early Dec.
0 -
JRNJ,
Letrozole was a breeze for me for the first three months. At a telemedicine appointment last spring I mentioned how much better this drug was than tamoxifen, and she just smiled and nodded. I think she knew that it was too early to say, but didn't want to tell me. 11 months later it's a different story.
Margun,
I didn't mean to say that the hair loss is manageable. It's beginning to feel like the early days of chemo when my hair started falling out.0 -
anyone one tried a shampoo or treatment that seemed to stop hair loss? It is most superficial thing among all but affects the moral self esteem.
For dry throat some decaf tea seems to help but only temporarily. Sometimes the talking is challenging.but as much as it is just se I am still grateful.
0 -
Margun, someone recommended pura d'or shampoo hair thinning. I used it and it seems to work. I am not sure if it is the shampoo or just luck but my hair stopped falling. 16oz Apple Cider Vinegar Thin2Thick Shampoo
0 -
Margun,
This is just anecdotal, but I have been taking collagen powder (Ancient Nutrition) for well over a year now and I have less hair falling out. I tried various thickening and sulfate-free shampoos but they didn't really do the trick and some even made my hair worse. Right now I'm just using Nexxus Humectress shampoo and Therappe conditioner and while I cannot say if they help, they certainly do not aggravate the hair loss.
I hope you find something that works for you. I understand how frustrating it is to have thinning hair. My ponytail at one point was only about the diameter of my pinky finger! Now it's more like the diameter of a quarter.
0 -
the collagen powder seems to be advised for hair but also do bon strength and skin elasticity. And I have bone problem as well. If there is no any negative impact from it, I would try.
0 -
Whatjusthappened, I felt like with Aromasin I had more trouble sleeping, and poor quality sleep, resulting in a headache every day. I also felt like my whole body was swollen and had pain in my arms and leg, which happened with all of the AIs. But the headaches and insomnia were worse with Aromasin. But I was also on Lupron, so wondering if I should give it another shot.
Princessbuttercup, I reacted to all of the AIs immediately.
0 -
JRNJ, thanks for the input. I'm definitely definitely noticing the sleep thing. I also noticed this morning that my blood pressure has gone up again. It had gone down to normal over the past couple of months. In fact, the nurses in both my GP's and MO's office commented on how good my blood pressure was this month. Today my wrist is killing me too-been icing it all day. My GP was wondering if CBD oil or THC would be helpful for the joint pains. I meant to ask my MO, but forgot.
It's a difficult choice, basically picking your poison. There are some women that have posted that they tolerate the letrozole better than the anastrozole, and a week really isn't a very long trial. Sometimes the se's decrease over time. I do know that the longer you stay off AI's, the harder it is to start back up again (mentally, I mean). I didn't mean to wait so long, just procrastinated a lot.
Wishing you a quick recovery.
0 -
I am staying with letrozole and I am afraid to change it. Better the devil I know than the devil I don't. Also, I think some SE are simply from forced menopause, like insomnia, fatigue, forgetfulness, etc. I am mostly worried about hip pain and right side flank. Has any of you Ladies have any similar pain?
0 -
LillyIsHere, I've had both hip pain (both sides) and flank pain (left side). I've had CT scans and MRI's on my hips which showed various problems in them, but no mets. There was also a lot of inflammation that showed up on the MRI, which my orthopedic thought might be diet related. I think it had more to do with the arimidex or the prolia shots, and he agreed that it is possible.
The flank pain I've had on and off, but it has never stuck around long enough for me to want to go down another rabbit hole. The skin on that side was even red for a while, bit it eventually went away. It bugs me to not know the cause of it, but I'm thinking my lowest rib possibly, as it's not far back enough to be a kidney. If it ever stays around too long I'll mention it to my MO.
I would mention your pains to your MO if they are bothering you. Mine says that any new pain that sticks around should be investigated. Probably nothing, but better safe than sorry.
0 -
Whatjusthappened and Lily, I've always had low blood pressure, but was on statins for cholesterol. After 7 months on AIs on and off my blood pressure went up a lot, my cholesterol went up. I tried CBD oil, in addition to tumeric, glucosamine, CALM, iron, magnesium, fish oil, celebrex and brand name Arimidex. In the end I was in crippling pain and none of it really helped, but I think the celebrex helped a little. I've been off about a month, and although am in pain from DIEP, otherwise feel like my old self. And my side effects were so bad, I had to try something different. I don't have hip or back pain. My pain was in my arms up to the elbow and my legs up to the knees.
I had forced menopause also. The symptoms on the drugs are totally different than off the drugs. The drugs really mess with sleep and feeling normal. Seemed worse on Aromasin. I guess I'll try the letrozole when I'm ready, since that's the new one I haven't really tried.
0 -
JRNJ, from what I've read, aromasin has the least effect on cholesterol, though it still can raise it. Mine went up dramatically on arimidex, then decreased a bit when I went off it. Might not be an issue if you are already on statins, but worth considering in your deliberations.
I know we've gone round and round weighing the benefits vs risks of these drugs. I do think the side effects are compounded if you are simultaneously plunged into menopause and put on an AI. I've had weight gain, raised blood pressure, raised cholesterol, raised glucose, as well as inflammation. Being in pain also means you're less likely to exercise. Those are all things that raise your risk for cancer, so I have to wonder if the AI's end up hurting more than they help. Then every new drug you get put on to combat these adverse effects brings it's own host of side effects, compounding the problems. It sucks, to put it bluntly. As much as I respect the medical community, I think each person needs to take charge of their own health and figure out when get off the merry-go-round if it gets out of hand. I'm not there yet, but just because I'm too scared to do it.
LillyIsHere, I felt the same about not wanting to try something new. I think I've actually used that phrase "the devil you know vs. the devil you don't" with my MO, when he would suggest I switch. But like JRNJ, I just got to a point where I couldn't take it anymore, so I told him I'd try something else before giving up. That's where I am now. Hopefully, this one will be better...
I sincerely hope that each of you finds something that you can comfortably deal with. Thank you for posting your stories here. It is always nice to know we are not alone!
0 -
Thank you, Ladies. MO suggested having a hip MRI to see what is going on. He ignored the other aches and pains.
My blood test today showed white blood cells went all way down. They were low, to begin with but today the numbers were way lower than normal-low. Any of you have a similar experience? Maybe AI?
0 -
LillyIsHere, I'm sending positive thoughts your way that the MRI shows nothing concerning. I've never heard of an AI causing a low white count. Did you ask your MO about it?
0 -
Thank you for all the positive thoughts. I got the blood results after the doctor's appointment. Every 6 months, I'm scheduled for 3 appointments back to back: blood tests, doctor visit (he gets the results directly), and Zometa infusion. It is convenient for me but I don't get the results in between appointments to ask questions. MRI is scheduled for tomorrow and I am having a second thought to postpone it because I'm still recovering from Zometa and the contrast they inject does hurt the kidneys, the same as Zometa does. I am trying to give my body a break when I can.
On another note, I went for acupuncture today and when I asked him for tips to increase white blood cells he said black beans and dates are really good. I think meat too but I am not much of a carnivore
Whatjusthappened, I can see you had radiation after DMX. I wonder why.
JRNJ, I wish you a fast recovery. On a good note, a nurse told me that aches and pains on arms and legs from knee down are OK as recurrence fear goes. Unfortunately, as SE of AI, take time to start feeling better.
Hugs
0 -
Lily, Thanks for good thoughts. I didn't think is was a recurrence for me because it was all over my body and symmetrical. I figured a recurrence would be in one arm, not both. And it went away when I stopped the drugs. I hope you find benign answers and relief to all of your ailments. My blood work is always normal, they take it every 6 weeks, except my cholesterol. But I just don't know how I can continue to be in crippling pain from these drugs and live my life. But I haven't given up yet. I also had radiation after dmx. I have attached the NCCN guidelines below. I don't think they are being followed properly. More DMXs should have radiation or at least the patient should be given the choice. They told me I should have radiation because I had LVI. But I also read, if you have node involvement you have LVI, but they don't always see it on pathology. I also had extracapular extension.
0 -
LillyIsHere, I looked up Zometa, and one of the hemotological side effects is neutropenia, or lower white count (12% of patients). Do you know why you get the Zometa infusions instead of another therapy? I get Prolia injections every six months, and it while it has side effects, neutropenia isn't one of them. Generally they look at my blood work before my injection, and I imagine it's the same with you. I think if the white count was concerning, they wouldn't have given you another infusion (unless the nurses are not aware of that side effect). I would bring this up with your doctor the next time you can talk to him. A low white count isn't necessarily dangerous (my husband's has been low all his life with no problems), but it can make you less able to fight off infection.
That's a good chart that JRNJ posted. After my DMX I was referred to a radiation oncologist who put all my information into a risk calculator that gave a percent risk of local recurrence. Mine came up too high so he recommended radiation. The things that raised the risk were mostly tumor size and a positive node. I also had extensive disease of that breast with fairly close margins, which he said was all the more reason to do the radiation. To be honest, I don't know how much good radiation does on slow-growing ILC, since like chemo, it targets rapidly-growing cells. I've had multiple complications from radiation (fibrosis of my lung and lymphedema to name a couple), so like the AI's, I have to wonder if it did more harm than good. But I had left my crystal ball at home that day 😉.
Take care!
0 -
LillyIsHere, I looked up Zometa, and one of the hemotological side effects is neutropenia, or lower white count (12% of patients). Do you know why you get the Zometa infusions instead of another therapy? I get Prolia injections every six months, and it while it has side effects, neutropenia isn't one of them. Generally they look at my blood work before my injection, and I imagine it's the same with you. I think if the white count was concerning, they wouldn't have given you another infusion (unless the nurses are not aware of that side effect). I would bring this up with your doctor the next time you can talk to him. A low white count isn't necessarily dangerous (my husband's has been low all his life with no problems), but it can make you less able to fight off infection.
That's a good chart that JRNJ posted. After my DMX I was referred to a radiation oncologist who put all my information into a risk calculator that gave a percent risk of local recurrence. Mine came up too high so he recommended radiation. The things that raised the risk were mostly tumor size and a positive node. I also had extensive disease of that breast with fairly close margins, which he said was all the more reason to do the radiation. To be honest, I don't know how much good radiation does on slow-growing ILC, since like chemo, it targets rapidly-growing cells. I've had multiple complications from radiation (fibrosis of my lung and lymphedema to name a couple), so like the AI's, I have to wonder if it did more harm than good. But I had left my crystal ball at home that day 😉.
Take care!
0 -
Have others also been told that starting a new AI restarts the 5-yr countdown? I took tamoxifen for 18 months, then three months off for a uterine biopsy followed by hysterectomy, then started Letrozole. I was told that the time on tamoxifen didn't count towards 5 years.
0 -
JRNJ, thank you for the chart. From 4 MO I've seen, only one told me that RO team was 50-50 if I needed radiation but in the end, they decided no. I guess because it was the left side and SE on the heart would complicate things. Time will show if they were right or wrong.
Also, from my experience, the SE of letrozole tends to get worst before it gets better. For me, the peak of the worst SE was at 6-7 months. Also, lack of sleep or spicy food that I love makes me feel worst however, to be fair, I feel better now than last year.
Whatjusthappened, thank you for letting me know about the WBC and Zometa. I will check with MO next time I see him but he really wanted me to be in Zometa to lower the case of recurrence. Do you get Polia shots for the same reason?
PrincessButtercup, it seems that AI rules keep changing. I am in a group of 7 + years of AI. It sucks! I hope it is keeping us alive
0 -
LillyIsHere, I take the Prolia to prevent worsening of osteoporosis, though I do think it offers some protection from bone mets. Have you had bone mets or are you at a high risk of recurrence? I see that Zometa is often used as a treatment for bone mets, but I don't know much about why it would be used prophylactically instead of Prolia, Reclast, or any of the other biphosphonates.
Sorry about being nosy, I get curious and ask a lot of questions.
0 -
Whatjusthappene, we all ask questions and learn from each other. So far, knock on the wood, fingers crossed
I don't have bone mets. ILC and LCIS were biopsied in my left breast and I decided on DMX. MRI didn't show all ILC locations but as a surprise, after surgery, 2 out of 5 nodes were found positive. Still, I was recommended only for letrozole and Zometa was optional to help to strengthen the bones once I started letrozole. DEXA scan on the first month of starting letrozole showed normal bone density but as you know, AI kills the estrogen and all the good stuff that estrogen brings to women's bodies. I changed my MO and the one I have now told me to start Zometa because some research has shown to slightly prevent recurrence and also he said because I am thin, I am prone to osteoporosis. It was the recurrence reduction that changed my mind. I take Zometa infusion every 6 months for 3 years. Prevention of Formation of Metastases
Bisphosphonates
The emergence of data showing that BPs could improve survival and prevent recurrence, when used in the early breast cancer setting, came from the ABCSG-12 study which randomized premenopausal women rendered chemically postmenopausal with goserelin to tamoxifen or anastazole +/–ZA. There was a relative risk reduction of 29% for disease recurrence with ZA compared with endocrine only (HR = 0.71 95% CI: 0.55-0.92) with a significant overall survival benefit seen in women >40 years (HR = 0.57, 95% CI: 0.33-0.99, P = .042).20
0 -
LillyIsHere, thanks for the information and the link. Sometimes I wonder why doctors choose one medication over another. From just perusing that article, it looks like Zometa might be better at reducing recurrence risk, while Prolia (denosumab) might be better at rebuilding bone. So I guess it really depends on the primary focus for prescribing it. I already had osteoporosis before starting an AI but am not a high recurrence risk, so that makes sense. I noticed too that whether a women is pre- or post- menopausal plays into the decision as well. I'll have to go back and read it through when I'm a little more awake. I have my injection coming up next week.
Did you end up postponing your MRI?
0 -
Whatjusthappene, yes, I agree with you however, I sometimes don't trust a doctor 100% because I feel I am one of the hundreds of patients they are seeing and they go by the book.
I did postpone my MRI for the beginning of March because I learned that the contrast they inject is heavy on the kidneys and I just had Zometa infusion that also impacts the kidneys. I thought to give my kidneys a break between stuff injected in my body that impacts them.
JRNJ, how are you feeling? What did you decide on letrozle?
0 -
Well this seems like the right thread to post this. I put off trying the anti-hormonal drug for 8 months because I was having ongoing chronic pain from radiation that I was upset about and didn't want to put something else on top of it. I finally started getting that under control with PT and thought I should try out the drug. They gave me toremifene (SERM similar to tamoxifen) because I've been on wellbutrin for 20 years and don't want to go off and wasn't willing to shut down my ovaries (I'm ~10 years away from natural menopause).
I had hopes that I would be one of the ones with minimal or no side effects but did not make it past 4 days. Day 1: headache and nausea onset. Day 2: continued headache and nausea, some foot cramps. Day 3: Continued headache and nausea, calf cramp, caused onset of panic attack that I was getting a blood clot. Then cramps onset on other side too, realized I wasn't having a blood clot, but cramps proceeded around my body like whack a mole from legs to abs to back to hands (made me feel 90 yrs old) to lower arms (who gets muscle cramps in lower arms???). Day 4, continued headache and nausea, whack a mole cramps. Shooting pain in one of my teeth--did I have a new cavity? Then random shooting pains in more teeth. It had to be the medication. Went to sleep that night (Ambien-assisted), woken up from a deep sleep with a sharp shooting muscle cramp in my foot. Hobbled to the bathroom and cried on the toilet, feeling like I was being punished for getting breast cancer. Could not fall back to sleep for several hours; my alarm went off in the morning I woke up tired and nauseated, canceled the morning PT session I had scheduled and didn't go to work. That was the last I took of the pills...waited all the next day hoping to get the stuff out of my body ASAP. Nausea has now subsided about 75% and cramps mostly, but I still have some random foot twinges.
I am debating whether I want to even go back to the MO after this. If she tells me that my body needs to get used to the medication I want her to tell me how many weeks or months I am supposed to function like that while my body gets used to the meds. I don't even know I could willingly put the stuff back in my mouth. And I'm not sure how many bananas I would need to eat or water I would need to drink to combat the level of cramps...I was well hydrated and fortified on potassium the day before I started the meds...
0 -
BCat40, I don't have any experience with SERM's so I don't know much about the side effects, but just wanted to say that those side effects sound horrible and I hope you are able to find a medication that doesn't cause so much pain. Is Tamoxifen off the table when you're on Wellbutrin? Without shutting down your ovaries, it doesn't seem like there are many options (maybe someone can weigh in on that).
I think most on this thread can relate to the predicament you're in. I would certainly not want to live that way since what you're describing sounds a bit extreme, even as SE's go. If your doctor is telling you that you "need to get used to it", I might start looking for a different opinion.
Sending you some positive thoughts.
0 -
BCat40, I am sorry but I am not familiar with this medication. Can't you take tamoxifen? You will find many women in tamoxifen who can give you tips and probably you won't have these harsh side effects.
You reminded me when I started letrozole+lupron shots, I felt like I had explosive fireworks inside my body, I also remember the roots of my teeth were hurting, strange sensations. Like living in Matrix but after a month or so I had 2 other surgeries and once all was settled down, I start feeling the "usual" letrozole SE.
I can see you had a small tumor. What is the recurrence risk if you don't take this medication? Can you ask your MO?
0
