Tamoxifen and poor wound healing
Comments
-
peridot180...so sorry you are suffering. IMO its so unfair when MOs won't work with you and just want you to take the drugs. I live with chronic pain so I totally get where you are coming from. It can make you very depressed. I'm much older than you and have different stats but I refused anti hormones from the start, mostly due to my chronic pain. When I initially spoke to my MO about it, she told me there were no side effects! Absolutely ridiculous ! Anyway I'm not telling you what to do but I decided to lower my estrogen levels more naturally by losing 30 pounds and exercising daily. This has been shown to lower recurrence rates by 40 percent. I also take several supplements including Breast Defend. Please LMK if you have any questions. Good luck. I hope you find a solution ASAP!
0 -
peridot180, I'm also so sorry you are suffering. I am suffering too on AIs. My feet, ankles, hands, arms, constant pain. I don't think anyone answered your questions. No they are not all the same. Tamoxifen stops the estrogen from binding with the cancer, it does not lower estrogen production. The AIs stop estrogen production from fatty tissue and the adrenal glands. Lupron stops it in the ovaries. Even though you aren't getting your period, you could still be producing estrogen from your ovaries. As stated above, if you go on an AI, at your age, I would think you would need to go back on Lupron. I'm 55 and they put me on Lupron. The side effects for some are much worse on AIs than Tamoxifen. Others can tolerate AIs, so I guess you won't know unless you try. The side effects can also be very different. I also have taken many breaks since starting June 1. My Dr. told me to take a 2 week break when switching from Aromasin to Arimidex. I am currently taking it every other day, at the suggestion of my Dr. When I can't take the pain any more I stop for a few days. When I got my ovaries out in August I stopped for 2 weeks. I stopped last week because I was supposed to have DIEP next week, but they are rescheduling on me. I haven't restarted, I have an appointment on Monday and will ask for Femera. I think you should get the Femera from her, stop both meds for 2 weeks and see if it makes a difference, than try the Femera, you never know, it won't hurt to try it. If you are miserable you need to make some sort of change. I know what if feels like to hate a Dr. and feel lost and alone I've been there too. But looking back, mine probably did the right thing. Maybe this is her way of offering a change without admitting why. I'm not saying she is right, or you should stay with her if you don't like her, I feel your emotional pain. But after dumping my BS, I've decided to stay with my MO, who I also feel is not the best choice for me, as long as he keeps making changes and trying new things at my request.
0 -
I know what it is like to live in pain everyday. Take one day at a time. I agree find a doctor who will listen to you. You are in charge. If your doctor doesn't listen and is not willing to try you on other meds, find someone who will listen and is more willing to find alternatives for you.
0 -
Rah2464 - I forgot to ask my MO about the estrogen cream. Knowing her, though, I don't think she would do it. I just know it. I honestly do not even know if the tiny bit of estrogen would help me at this point. I would try it, but I don't know who can prescribe it to me. I need a new general practitioner to do that, which I don't have at the moment (they are working on it). I don't have a gynecologist either right now due to insurance issues.
dtad - I am so sorry to hear about your chronic pain. I know many people refuse these drugs and I can definitely see why. This has been PURE HELL for me. I was so happy after chemo, surgery, and radiation! I was doing wonderfullY! Then I start these drugs and everthing just went to hell. No side effects! What a joke. I am not overweight (underweight, actually) and I exercise each day. I'm not sure what else I can do. I just cannot handle these drugs.
JRNJ - I am sorry about your experience on AIs. Honestly, for myself, it is not something I want to try. I feel like I will just go from my frying pan into the fire in my case. I was on Lupron, but quit it a few months ago. My period never came back. I really hope you get better. These drugs are awful. You are right, I am miserable, and I need to change something.
luv2walk2 - I am so sorry to hear about your pain. Thank you for your kind words. I am definitely going to find another MO as soon as my doctor's office approves it.
I need a break from this drug and ALL of these breast cancer drugs. My skin in that area just keeps cracking and cracking no matter what I put on it or how soft my stool is! This all started with the Tamoxifen and has NOT improved. It got even worse on the Lupron which I quit. I cannot take this anymore!!
Starting today, I am stopping the Tamoxifen. I can't wait to see another oncologist at this point, which could take another month or more. I am DONE. I can't live like this anymore. I have thought about suicide many times during the past year due to this and the emotional pain is too much for me. I am tired of pain and living in fear EVERY TIME I go to the bathroom, no matter how soft or regular my stool is. I am tired of avoiding food and no longer being able to enjoy my life. I can't do this anymore. I'm in tears writing this, but I can't handle this anymore. I just want to heal!!
0 -
Best of luck yo you. QOL matters!
0 -
I wish you the best, and hope you get another MO. Tamoxifen stays in the body for some time after you stop it, so I don't know why you can't consider taking a break to heal, and then trying out a different strategy with dosage or other in the future. My provider took me off of Tamoxifen last week (and I didn't even ask her to) because I turned pre-diabetic quickly. I will be pursuing surgery in the near future, but she was not at all concerned about me not being on any drug for a defined time period. I'd also caution you to be patient with your recovery - I've read that it takes some women six months to bounce back from endocrine therapy. On the plus side, I swear that my shoulder (rotator cuff) and lower back are feeling better and it's only been a week off of the drug. I assumed it was my osteoarthritis getting worse but I'm starting to wonder if it was the drug.
0 -
Thank you, dtad, and thank you PAKNC. I hope you feel better soon, PAKNC!
I have tried everything possible during the past year (and longer) since starting the Tamoxifen in October 2019 and I have had it. I have just reached the end of my rope on this. I stopped taking it two nights ago and don't intend to start back up until I am healed. I will keep everyone updated on everything.
I am looking into getting a new MO, but that will take some time. I am currently waiting on my primary care office to get back to me (I will call them if I don't hear from them by Wednesday).
For now, though, I am happy I finally made the choice to stop it. I know it's risky, but I cannot live like this anymore. Each day living in pain and fear has been a nightmare for me. And you are right, quality of life is SO important. I just can't suffer anymore like this.
Thank you PAKNC for letting me know how long it might take. I am trying to be patient. I know these drugs can stay in your system for a long time. My MO said it will only take 1-2 weeks for it to be out of my system, but I don't believe her anymore. Sometimes, I don't think she knows what the heck she's talking about. I need an oncologist I can trust. And that's what I will work on.
Thank you everyone for your kind words. This has been hell and I just want to see a light at the end of the tunnel this year. I have been suffering WAY too long. : (
0 -
Peridot - fingers crossed that this works. And hope you get a new doc soon.
0 -
Thank you, MinusTwo. : ) I hope it does!
0 -
Hi Peridot. I hope you find relief. Endocrine therapy can cause serious QOL issues for a lot of people. We have to be able to enjoy this life, and if the drugs are incompatible with that, then stopping seems like a totally reasonable option. Once you're healing up and feeling like yourself again, maybe you can try a different medicine. I'm considering Fareston, even though it's technically not approved for early stage. It's still an estrogen blocker.
I hope you feel much, much better very soon!
0 -
Orangeflower - Thank you for the kind words. : ) I hope I find relief as well. It's only been a week since I quit, so I have a long way to go until it's out of my system apparently. I am trying to be patient. I just want to enjoy life again.
0 -
Peridot look into other alternatives for estrogen metabolism if you stop taking med. I am on DIM and calcium D glucarate. No side effects. I wish you the best. It was stories like yours that influenced my decision to say NO to Estrogen Blockers. Happy Monday!
0 -
Thank you, Beclyn20. Sorry I missed your message!
I will look into alternatives. It has been a couple weeks since I've been off the Tamoxifen and I'm still having issues. : ( Once I stopped, I got REALLY bad constipation for some reason, which re-injured me all over again (bleeding, pain, etc). I hardly ever get constipation, so I can only attribute it to that. I had to start taking Miralax to get back to normal since Colace wasn't working (and my diet did not change, which is very healthy). I'm still suffering. But I realize it takes time for this med to leave the body and fissures take a LONG time to heal (weeks to months, even with surgery).
My GI wants me to get a colonoscopy just to rule everything out completely. But with all my fissures, I am scared of even more pain. I am tired of suffering.
I worry about these effects from the Tamoxifen/Lupron being permanent. : ( I never got my period back and the anal skin is still fragile/thin. I worry this will be permanent. I wish I never started these drugs... if I could go back in time, I would have NEVER gone on them. I worry they have destroyed my tissue in that area and that there is no hope. I hate feeling this hopeless...
0 -
Hello: I have been reading these posts after searching for a relationship tamoxifen-anal fissures. This is the only one I found, but it confirmed my suspicions that the worsening of my anal fissures has to do with tamoxifen (I've only been taking it for 2 months). I will ask my gynecologist to switch to something else next week.
However, until I started tamoxifen, I had great success both for the fissures and hemorrhoids (within about 10 days) with acupuncture. The tamoxifen spoiled this effect. If you stop tamoxifen, it might be worthwhile to try acupuncture for quick relief.
Another point. Most people, when defecating, hold their breath and PUSH. As I read on the Internet, the result is that the anus closes and makes it much more difficult to pass the stools. We should learn to BREATHE (exhale) as we defecate. This helps the anus to relax and the pressure comes from the diaphragm instead of from the rectum. I also take something very light to read (i.e., a little booklet on birds) and relax and take my mind off my bottom when I go to the bathroom. But not staying long on the pot, as that is also bad.
And, though it sounds weird, my acupuncturist also advised me to try to take sunbaths on my bottom- not more than 10 minutes, we don't want a sunburn. He said direct sunlight helps to dry out the wounds and is a great healer. The most difficult part is to find a private place where one can do such an undignified activity!
Hope maybe some of this helps.
0 -
Thank you for sharing this, JinnyNH! It's so helpful to know what's worked for others.
The Mods
0 -
Hello JinnyNH,
I am the one who originally posted this. I am sorry to hear you are suffering from a similar issue. Did you get the surgery to help the fissures? It was a failure for me (although did help the pain) since the skin is so messed up (cracking, dry... just a terrible mess). My CRS described the anal skin as "the skin of a 90+ year old woman." : ( But I think I mentioned that already.
I stopped Tamoxifen for a couple of months, but saw no improvement. Either it caused permanent changes in the skin that won't go away with stopping it or it was never the problem. I have still not gotten any answers from doctors. I have plans to get a colonoscopy this summer and an exam under anesthesia with a top CRS from UC Davis Medical Center. I am not sure what else I can do. To be honest, this whole thing has ruined my life (starting with breast cancer, and now this... I am not the same person anymore and I have been having trouble coping).
What helps for me temporarily is taking Miralax every single night to combat the possibility for ANY constipation (even though I never got constipated before, it is extra insurance for me to make sure I never do). This helps give me piece of mind and makes it easier for me to go without giving me awful diarrhea. Long-term use is safe according to my gastro and CRS.
I also use Calmoseptine in the area. Although it hasn't helped heal anything, it is cooling and provides relief. I stopped using muscle-relaxing ointments since I already had the surgery and the muscle is no longer the problem; it's the fragile, thin, atrophied skin.
I hope this is useful to you. I have thought about acupuncture, but have never really researched it. I wonder if that would be covered by my insurance. I am willing to give anything a try. But, honestly, I just want to heal. I just want to know what is wrong with me. Nobody is giving me any answers and it's horribly frustrating.
I ended up starting Tamoxifen again a month or so ago because I am scared of not taking it (I was diagnosed in my 30s and did not feel safe not taking it). I am pretty much stuck between a rock and a hard place on this. I don't know what else to do.
I hope you find what helps you and cures you. : )
0 -
Hi,
Just wanted to say I suffer from fissure also, but not as bad. The tamoxifen has totally and completely dried me out head to toe. A bowel movement is hell unless I drink enough fluid(never seem to be able to drink enough to combat the tamoxifen SE). I've used Miralax but typically stick to Calm, its powdered magnesium. Supposed to help anxiety, muscle cramps etc. It helps to keep it moving. I've had accupuncture for other issues,,I will have to look into it for that. My next thing is I am going to try coconut oil and see how that goes.
0 -
Hi Peridot180 and all the others:
I spoke to my gynecologist on the phone and, though she said anal fissures were very rare in relation to tamoxifen, she agreed to change my medication to Arimidex. So now I only have to worry about my bones! She was quite receptive and said they'd call me again in a few months to see how it went. She even gave me the results of my densitometry over the phone (osteopenia in the hip, the back OK).
Though acupuncture does not work for everyone, the times I have used it for this issue have been nothing short of miraculous. Of course, I do not have your wrecked skin problem, but the "philosophy" behind acupuncture is that everything is caused by an imbalance of energy and if the balance is restored (through the stimulation of the needles), the body will heal itself. I should think it's worth a try. I had nose bleeds for over 20 years and they also eventually went away, also with the help of acupuncture. The acupuncturist is also using the needles to strengthen my immune system, the first defense against cancer cells.
Good luck!
0 -
beach2beach - Good luck with everything. Tamoxifen does not seem to dry me out. I have zero vaginal issues on it. You would think if it caused fissures that it would also cause vaginal atrophy at the same time. I have not experienced this at all. It's just my anal area. So, I have no idea. *sigh* I drink PLENTY of water throughout the day, so that is no issue for me. I drink so much that I had to increase my sodium intake because I was flushing everything out, lol. Whoops.
Coconut oil did not help me. In fact, it stung and made it worse. I use Calmoseptine mostly now. My CRS and gastro strongly recommended it. It is very thick, though, which makes it hard to apply. That's the only thing I don't like about it.
JinnyNH - Yes, there is no evidence of Tamoxifen causing fissures according to my MOs. I have searched EVERYWHERE on the Internet and there is no evidence for it. It can cause vaginal atrophy, though, which I do not have and never did have, even on Lupron.
Unfortunately, I have osteoporosis in my hip (probably caused by years of using Prilosec for acid reflux, so...), so Armidex would not be good for me. I was also on Lupron for a few months, but quit due to fearing it was causing or making the fissures worse. I am still debating about starting that again since I still get my period now, but I am unsure due to bone loss issues.
I would love to just never take Tamoxifen again since I still feel like it caused or partially caused my issues, but being off of it scares me too much. I'm in my thirties and fear the cancer coming back, so I want to at least try to continue taking it. I'm still going to get more testing done, though, in case something else is wrong with me. I just find it all over odd how everything started when I began taking it. My MO thinks I'm nuts, but I don't really care. It's not her body.
I'll research the acupuncture and see if my insurance covers it. It would definitely be worth a try. Thank you for the advice. : )
0 -
Peridot this might be an odd question but what toilet paper do you use? After being on Tamoxifen for almost 3 years now I found my tissues are very tender. And sometimes the "softest" tissues irritated the most. I finally landed on seventh generation paper that isn't too coarse and doesn't generate little fibers that irritate. Just shooting in the dark here to see if anything else is adding to the already intense damage you have. I hope you get to try the acupuncture i swear by it to relieve other symptoms.
0 -
Rah2464 - I just use regular Charmin Ultra Soft toilet paper. I don't wipe at all. I just pat the tissue. I also sometimes shower right afterward if it is very sore and that helps. I read about bidets, as well, but then heard they can actually CAUSE fissures due to how strong the stream is, so I haven't bought one. I find just getting in the shower afterward works just as well. I also tried wet wipes, but found them irritating to the skin.
0 -
Hi peridot180
I live in the UK and found your post recently asking about any links between Tamoxifen and anal fissures. I started taking Tamoxifen last February 2020 and 8 months later, I started getting tears/pain/blood when going to the loo. This kept repeating every 2 weeks but then has got more regular and painful. I've been to the Dr 3 times now, had blood tests (normal), poo sample (normal) and also had a sigmoidoscopy and nothing was found (thankfully). But I'm suffering really badly when going to the toilet - major pain (like pooing glass) and blood. Some days are better than others but mostly I'm in constant pain. I've been given Diltiazem but that doesn't work. I am a healthy eater and drink plenty of water and don't strain when passing stools. Recently, I've been wondering if there is a link between Tamoxifen and anal fissures (although I have asked the Doc but they discounted it) and then did the google search and you came up! I have since spoken to my breast care unit but they have said that there isn't a link between the 2 and I can't come off the Tamoxifen. I really do feel that there is a link as the only thing that has changed in my life is taking this drug. There has to be something that is behind all this? I need to find a way to manage this and the pain if I have to keep on the Tamoxifen. Are you still suffering? Have you changed your drug?
Thanks.
0 -
Hello Loxmeadow7,
I am so sorry you are dealing with this. No, I have not improved. I went off Tamoxifen and Lupron and did not improve. I was off Tamoxifen for about 2 months. With no improvement, I went back on the drug due to fear of cancer reoccurrence. I was just too scared to stop it, even though I am suffering. I did not start up the Lupron again, though. I may or may not go back on it. I'm not sure right now (I have bone issues, so going on it will probably exacerbate those).
It is possible Tamoxifen permanently damaged the skin in that area. I have no way of knowing. It is all very strange because I have NO issues with vaginal atrophy. All I know is that my problems started with taking this drug and I cannot help but link the two. I was doing wonderfully beforehand. If I could go back in time and not take it, I would DEFINITELY not take it. But it's too late. : ( The damage is done.
I am getting a colonoscopy to check for other issues next month hopefully. I have honestly been putting it off due to pain and fear, but I know it needs to be done. My GI and CRS think it is a good idea just to rule out other issues. But I do not have any digestive issues that point to IBD, so who knows. After that, I am going to see a specialist again (either at UC Davis or UCSF) and see what they can do.
My MO discounted the link. I can find no other information on this link online, so I'm not surprised you found my posts. I feel very alone in all this and honestly some days just want to die.
Diltiazem did nothing for me, nor did any of the other drugs like it. I did get the LIS surgery, but it only prevents the muscle spasms (which were AWFUL). Thankfully that has improved, but the skin is an awful mess (like a "95 year old woman's" as my CRS put it when he examined me during surgery). I am honestly at a loss.
Did you go through chemo? Did you have fissures during chemo, if you did? My CRS thinks chemo caused the skin problems since I had fissures through chemo, but they all healed after stopping it and my skin was fine. I definitely did not have these skin issues after stopping it. It was only after starting the Tamoxifen that I had issues.
All of this is INCREDIBLY frustrating and doctors are not giving me any answers. I have to get more tests done to figure it out, I guess. I would just stop taking Tamoxifen completely (I honestly hate this drug due to many reasons) but I'm scared...
All that helps me temporarily is applying Calmoseptine, taking Miralax daily to prevent ANY hard stools, and drinking a lot of water. Other than that, I don't know what else to do. Nothing is working.
I hope you find some answers because I certainly am not. : (
~Stephanie
0 -
Peridot180
Thanks so much for your reply
I'm sorry you are still suffering. Such a shame that things didn't improve when you stopped taking Tamoxifen. I think you're right to go back on it though as like you say, for your own protection. You are not alone in all this - I know the pain is awful and it's horrible not knowing what is definitely causing this and how to get it resolved but that's the doctors' job. Don't worry about the colonoscopy - they should sedate you so you won't feel anything. It's best to get it checked out for your own peace of mind. No, I didn't have chemo - just radiotherapy to the whole breast. I think we just both need to keep pushing for help and to get some answers from the doctors. I'm not going to let this one go! How many years have you got to take Tamoxifen for? I'm five years, so have 3 years 8 months left 
I use Sudocreme which is probably similar to Calmoseptine. It does help a bit. I also find having a bath helps relax everything and I use a bit of tea tree oil in it. I also apply Vaseline before going to the toilet to add some protection. It's not very dignified this condition, is it?!!!
I've got another appt in a couple of weeks so If I have any answers, I'll get back to you!
All the best and stay strong. xx
0 -
Loxmeadow7,
I have been taking Tamoxifen about a year and a half. So not long at all. When did you start getting fissure problems? Since you started Tamoxifen? Mine happened a month into it. I supposedly have 5 years to be on it, but who knows? My MO never tells me anything and I don't believe half of what she says. So it will probably be 10 years. I was diagnosed young, so I probably have to be on it longer.
Did you get surgery for the fissures (lateral internal sphincterotomy)? It is a permanent fix in 98% of cases if the problem is the muscle. It definitely helped (no more muscle spasm), but the skin keeps breaking no matter how soft my stool is. The creams did nothing for me. My CRS had no idea what else to do and my MO just sent me to more specialists.
Nobody understands how awful, painful, and embarrassing this issue is. Nobody except people who have gone through it. Some days I honestly just want to take a gun and end it. I can't talk to anyone about it due to butt issues and the stigma with that. People feel bad for me if I tell them I have a headache, but if I say my butt is sore, they basically just tell me to get over it or not talk about it. So I have nobody to confide in. My therapist is no help. She doesn't have ANY health issues (she's fit as a fiddle and in her 60s or 70s... good for her). She just asks me what I will do if the colonoscopy doesn't reveal anything and says some problems don't have any medical explanation. I'm sorry, but I refuse to believe that. SOME doctor has to know what is wrong with me and what in the hell caused this problem and how I can heal. I told her I refuse to give up hope and she just looked at me blankly. I honestly don't know what I bother with her. I never found therapy very helpful, but my MO insisted on it since she didn't want to deal with me and my issues.
Please keep me updated on how things go for you. I really pray someone gives you some answers. I am terrified of the colonoscopy, but realize that is the next obvious step for me and one I cannot avoid.
Thank you and stay strong as well.
-Stephanie
0 -
I wanted to mention that it could take 3-6 months post tamoxifen for you to notice any wound healing because it takes awhile for your body to get back to normal.
0 -
VioletKali - Really? My MO said it would take 2 weeks for it to be out of my system and didn't want me off of it for a few weeks. Honestly, though, I can't believe half of what she says anymore.
I was off it for about 2 months and felt a little better, but didn't feel 100%. I still felt like I had the fissures, but I wasn't getting any better or any worse (which I guess was an improvement). I started it again and then my skin just seemed to deteriorate again and the pain from tears resurfaced. : ( I wanted to stay off it longer to see if anything got better, but I chickened out.
I really feel like I'm stuck between a rock and a hard place with all this. I hate this drug and what it's doing to me (more likely than not), but I'm afraid of the cancer coming back. I honestly hate this...
0 -
Hi all:
I stopped taking Tamoxifen on May 25 and switched to Arimidex. I have continued to go to the acupuncturist. Now, one and a half months later, my hemorrhoids and fissures have practically disappeared. There is just a tiny sort of wound (I'm not even sure what it is), but no problems, no pain, no bleeding. I am sure it's the combination of stopping the tamoxifen and the acupuncture. I encourage my fellow-sufferers to try acupuncture, though while taking the tamixofen it wasn't very efficient.
0 -
Hi JinnyNH,
Sorry for the late reply! I did not see this message until now.
Wow, that is great to hear! I am so happy to hear your fissures have almost disappeared after stopping the Tamoxifen. How has Armidex been? I heard that's a pretty tough drug to be on, as well. I am assuming you are already in menopause? Unfortunately, I am not (I'm 37), so I would have to be on Lupron when I take it. It's not an option for me right now. : ( But I will discuss this with my MO.
I haven't tried acupuncture. I don't think my insurance will cover it. But I am still on Tamoxifen, so I don't know how much help it will be.
But I am so happy to hear you're feeling better. I hope I get there too!! But I think as long as I'm on the Tamoxifen, I will be miserable. : ( I don't know what to do anymore. So tired of suffering.
0 -
peridot180: Hi, sorry for the long delay, I don't use social media much, including this site. Arimidex seems to have given me carpal tunnel syndrome. I also have a lurking pain in one knee which I'm not sure whether it's also a side effect. I'm getting acupuncture for both and have added physiotherapy in the past few weeks. The acupuncture doesn't seem to help the knee and it's too soon to know about the wrist problem- I see others have this same issue. There is some degeneration in the knee, which may be age (I'm 76). These side effects make you feel like you're between a rock and a hard place. I will see my radiologist next month but I'm afraid she won't have many alternatives to offer. I've checked out other drugs and they all seem to have these same side effects (though none of them mention hemorrhoids!). It's too bad that research seems to stop at the primary goal and not go more into the side effects to find something with fewer effects and less harmful.
0
