Women on Ovarian Suppression + Hormonal Therapy Unite!
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Peridot, I had an unusual reaction from Lupron. I had skin rashes and impetigo anytime I had the Lupron shot. The nurse wrote it down and she said they are collecting unusual side effects of Lupron. So these SE exist, may not be under common SE but they exist.
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Lilly - Thank you. I'm sorry you had such a bad reaction from Lupron. These doctors don't know everything about side effects. Every medication affects people differently. It just seems odd that I started going downhill when I started the Lupron. I was doing so well last year after chemo and surgery. I was feeling great! Then all of a sudden, since I started taking these drugs that mess with my hormones, I have just felt worse and worse. I can't hep but think there is a correlation. My colon and rectal surgeon told me to stop it and I will take his advice. He's been practicing for 30+ years and has seen it all. My MO knows nothing about rectal issues. From what I've read online and heard from others, estrogen plays a big role in skin healing and health. Taking that away is just compounding my problems. I just want to heal from this and get on with my life.
All my MO tells me is to just see a psychologist. It's like she thinks my issues are all in my head. I understand they can be helpful, but I haven't had good experiences with them. I'm tired of her telling me I need mental help when I have a REAL issue going on that isn't in my head.
Sorry again for ranting. But I am so frustrated with doctors right now. I'm sure many of you can relate.
Off topic, but did all of you ladies get a bone scan done BEFORE starting Lupron? My MO ordered one AFTER I started taking it, which seems odd to me. I would think she would have ordered a baseline test before starting it.
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Peridot, I had my knee swollen and a big lump on the back of my knee, and PCP told me to talk to a therapist while the orthopedic doc found an 8.5cm cyst in the back on my knee. I had a new lump on my throat and I was directed to the therapist again while US I requested showed a new thyroid nodule! Doctors, like most people, think things don't exist because they never heard off. 6 months into letrozole I had so many unusual and weird things happening to my body and mind. And, yes, every medication has side effects, even as simple as aspirin. My PS told me as soon as I started letrozole that the skin, hair, and fatigue would be part of me and he is right. Regarding bone scan, I asked to have bone scan the month I started letrozole to check on the bone density. None of the doctors ordered anything for me. All the scans I had is that I asked for them and I had to convince the doctors. Makes me sad we have to fight in so many directions, insurance, doctors, do our own research... as you can see I am frustrated too. The only doctors who were really concerned were family and friends who are doctors.
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Periodot, to answer your question on bone scan: My MO ordered the DEXA scan soon after I went on Lupron/letrozole to get a baseline reading. Thereafter, I am to repeat the DEXA scan every other year. I can relate the many frustrations of dealing with doctors. I will add one more comment here: Since each doctor only addresses issues on his or her own specialty, and if you are like me who have a collection of specialists, this frequently leaves me (the patient) to put all the pieces together myself. Also, I have to be diligent of managing my own health records, so I don't end up going to a test I don't need, especially if the doctor is not paying close attention on what tests I had and when, since I had so many. Being a patient is like a full-time job!
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I can SO relate to what you ladies are saying. I am feeling so tired of treatment and side effects right now. It has also become such a burden to explain my complicated situation to many of the medical professionals I come in contact with. It's exhausting and stressful.
Why, as a person with no medical background, can I make connections and find answers that they cannot? Sometimes I get the feeling that people are not even trying, or not paying attention to obvious things. The scariness of that is overwhelming when my life is on the line.
Sometimes I so desperately want to get off the hamster wheel that is cancer treatment. I have watched my quality of life slowly worsen over the last four years. Little by little, my life has become so different from my life before cancer. Recently the gravity and severity of this change has started weigh on me more.
Sometimes the only thing that keeps me going is that in my case, I know my cancer will run amok if I quit, which will also probably make my life worse, but in a different way. Talk about a rock and a hard place. I don't know what the answer is, I'm just ranting and fed up.
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Thank you ladies for the replies. I don't feel so alone now in my frustrations with doctors and healthcare in general. We definitely need to be our own advocates for our health and not just leave it to doctors to figure it out.
Lilly - Wow, I'm so sorry to hear your concerns weren't addressed properly by your doctors. I'm glad you found out what was wrong and took a stand for yourself and your health. That is exactly what I'm trying to do. I'm just so tired of my MO saying to go to a psychologist all the time, like that will solve all my problems. My outlet for my mental health is coming on this forum and talking to all of you. You have all been so helpful and can relate to what I'm going through. I can't get that with just a regular therapist who has no idea what it's like to go through all this. I tell my MO that, but she just shrugs it off like it doesn't count. Ugh!
Saving Grace - Thanks for letting me know about the bone scan. My MO ordered it right when I started Lupron, but then Covid hit, and I couldn't get the scan for a few months. I wish she would have ordered it sooner, then I probably wouldn't have even started the Lupron to begin with. Now I just have to play the waiting game of getting it out of my system. You are definitely right, though. Being a patient is a full-time job! It's so frustrating.
buttonsmachine - I am glad I'm not the only one frustrated. I'm sorry you have to deal with all this. It is our bodies and we know them best. We know when something is wrong and when a drug is affecting us strangely. Just because it's not a common side effect doesn't mean that we don't have it.
I agree that life after cancer treatment is very different. In my case, it's been awful. I was feeling so well after chemo and surgery, then the hormonal treatment started and these rectal issues happened, along with other side effects (though the rectal issues have been the absolute worst). I honestly just feel like quitting all of it. I don't want to be in pain every day anymore. I would rather take my chances and live a short, happy life than a long and miserable one with debilitating side effects. But that's just me. I know everyone is different and has to make the decision for themselves and what they feel is best.
Thank you again all for your comments. I really appreciate you ladies so much. : )
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Me too. I so sick and tired of feeling awful, and having bad Drs., I'm starting to lose it. I can't live like this. I've been on Lupron since end of May and Aromosin since June 4. I had a headache and neck ache every day, pain throughout my body, severe foot and let pain, I felt swollen, and couldn't turn my head. Dr. said to take 2 week break and we'll try something different. But he gave me attitude, it took 2 visits. He's like, "I gave you this one because it has the least side effects." I felt better within 24 hours of stopping Aromosin. Not great, just better. Bone and joint pain and headache better. But I starting getting bad hot flashes and today I had a terrible headache again, after being out in the hot sun. I'm getting my ovaries out 8/25 and I am hoping when I get the Lupron out of my system the headaches will go away. I'm supposed to call him tomorrow. I think he's giving me Armidex because "its easier to get through insurance", which is a ridiculous reason, but I don't see any clear winner here between the three based on the posts I've read. I feel Tamoxifen may be a last resort, and I may respond better, but I'm afraid to go on it because I read it doesn't always work for ILC. Also he wanted me to get another Lupron shot 8/20, when I'm getting ovaries out 8/25. Why would I do that!!!! I think it's about the money.
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Hello ladies.
It seems like we have similar issues with understanding and support from MO.
Surprisingly, my surgeon told he always wanted me to take Tamoxifen, not Lupron+Arimidex. He was really upset because of all my SEs. From his perspective, quality of life is more important.
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After 2.5 years on Tamoxifen, my doctor is wanting to switch me to Zoladex shots with a Letrazole chaser due to tamoxifen causing fatty liver issues. I’m nervous about SE’s. Outside of the endless fatigue, Tamoxifen hasn’t been that bad. Thanks for this thread, it’s been very educational. Right now, I’m on a med break while I wait to get bone scan scheduled
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Hi again everyone,
Thank you again for the comments. I am glad to know I'm not alone with my MO not being very understanding. I saw my colon and rectal surgeon again and he once again told me I should consider stopping the Lupron. He has only seen my skin issues in women much older than me that are going through menopause, so that should be a sign. I still have one more month of it in my system before my next shot, although I know it will take time to get out of my system completely. This healing issue along with my bone loss issues are prompting me to stop it, even if MO is against it. I agree with what MikaMika said; quality of life is important. I just can't live like this anymore. I gave it a shot and I'm done.
Anyway, I see my MO at the start of September to discuss all this. Not looking forward to that.
The good news is that I don't need any more surgery for the fissures, since the muscle is not tense any more and the surgeon cut enough muscle to relax it. He just said I need time to heal and, without the estrogen my body needs to heal properly and quickly, it will be a long time to be free of this. : (
JRNJ - I hear you about frustrating doctors, ugh. I wish you the best with your surgery and hope you feel better soon! : )
Mikamika - Your surgeon is right about quality of life being important. I know it's a tough decision to make, but sometimes you just have a limit with what you can deal with it.
Candyapple1 - Hope you can get some answers here. These drugs are tough and everyone reacts differently to them. I've done well on Tamoxifen, but not on the Lupron. Enjoy your med break!
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ello beautiful Ladies! I came back to report my latest. Yesterday, I had a visit with my PCP, I told her my symptoms of my right side of the body, she passed me over to MO who I'm going to see next week for my yearly visit. I'm sure he will pass me back to her. Today I had a dentist appointment and he asked me how am I doing, I told him and his assistant how my body is separated in half, my left side where lymph nodes were removed is doing well, the right side is falling apart. They both laughed and they thought it was a joke! Oh well, someone is getting something good out of this - laughing extends lifespan. Also, I told the dentist I don't need a novocaine for the crown he is working on, I am getting immune to the pain.
I have a question for you all, what are your thoughts on Zometa? MO said it is optional but it protects my bones in case ILC cells decide to land in there. On the other hand, I am not a fan of infusion, also I am nervous about other weird SE. Do you think Zometa would be worthy?
Hugs,
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Hello, does anyone have trouble getting to sleep since starting OS + AI? I take zoladex and arimidex and find it very difficult to fall asleep
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smilingbrenda- funny you should mention that...as I lie awake at 3:30 am again! I do have a hard time falling asleep or getting back to sleep when I wake up in the middle of the night. I’m going to move my pill to the am to see if it helps. I also will mention it to my MO this week when I go in. This is my first month starting OS/AI
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I've had trouble sleeping too. For me, it wasn't a problem on Zoladex, but became a problem when we added Aromasin. Since switching to Faslodex I find that I sleep better, but still not as well as before breast cancer, or when I was just on Tamoxifen alone.
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I have trouble sleeping and it has started since I was breastfeeding my kids and it seemed to never gone away. Now more than ever, I assume it is related to forced menopause and of course some anxiety of the disease we are carrying with us even in subconscious.
Beautiful Ladies, I have my 1st year check up with MO this Wednesday. Since my diagnose a year ago, I don't go to the doctors like before. I am nervous now what he is going to say and what he is not going to say because he doesn't know.
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Peridot, I found this Harvard health article and I thought of you. It is mostly for urinary microbiome and urinary incontinence but it seems that probiotics work for interstitial cystitis as well. https://www.health.harvard.edu/blog/an-emerging-link-between-the-urinary-microbiome-and-urinary-incontinence-2020081220712?utm_source=delivra&utm_medium=email&utm_campaign=BF20200817-Bladder&utm_id=2353059&dlv-emuid=67fd251f-e70b-4b73-a451-02c908d6afa4&dlv-mlid=2353059
Lactobacillus is the most common species of bacteria in the female urinary microbiome, but other bacteria including Streptococcus, Staphylococcus, Aerococcus, Gardnerella, and Bifidobacterium are also present. There's evidence that the urinary microbiome changes with age. In addition, previous studies have shown that women with various urologic conditions, including overactive bladder and interstitial cystitis/bladder pain syndrome, have an altered urinary microbiome.
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Lilly,
Was this directed toward me? I don't have interstitial cystitis or bladder issues. Perhaps you meant someone else?
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Totally wrong person. So sorry Peridot.
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No problem, Lilly. : )
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hi ladies. Has anyone been experiencing lots of hair thinning. I’m a year and a half into OS/AI and at first I didn’t notice much but the last few months I’ve had a lot. Anyone know of any safe treatments to help it come back? It’s making me feel so yuck.
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Hi everyone, I've just been lurking occasionally since my diagnosis. I am finding this OS+AI business harder than my chemo and double mastectomy. I don't know anyone who truly understands and it feels so lonely - so I guess it's time to join the club. If you feel like you could use a friend who can relate, please get in touch.
I should be far from menopausal so I feel like I am wrecking my body. It's too risky not to follow my oncologist's recommendation though so I will try my best to adapt. My fourth (monthly) Lupron shot is on Monday and I've been taking Letrozole for over 2 weeks. So far, headache, nausea and fatigue are my main symptoms. It feels similar to the hormonal migraines that I experienced during my last year on birth control- but not as bad. The palms of my hands are also starting to ache. It's upsetting because I felt fine before. The only pluses are that I have lost some more weight so I'm pretty thin and my skin is clearer than it has ever been.
I'm taking vit D3, low dose calcium, magnesium, flaxseed oil, b-complex, tumeric, melatonin, and I am ordering vitamin K2. I've never been into exercise but I'm trying to take walks. I plan to try to add a weight routine. It seems like women who exercise are the most successful with OS+AI. I'll try to be one of them.
I'm also interested to hear if anyone has any strategies to prevent hair loss. Mine is coming in nice and thick since it started to grow back in May. I had wanted to get my blonde highlights back this fall but bleach might be a horrible idea... What do you think? Is anyone coloring / bleaching their hair?
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Tenacity83, same here. I'm miserable. Headache, insomnia and aches and pains throughout my body. Was on Aromosin and lupron for 6 weeks. Switched to Arimidex about 3 weeks ago. Last Lupron shot was 7/20. Getting ovaries out next Tuesday. Arimidex is a little better than Aromosin for headaches, but the more I take it the more miserable I am again. I also starting taking Allegra every day because it really seemed to help the inflammation, and head congestion and swelling. But that is contributing to my insomnia and making my headache worse again. I feel like I can't function. I don't think I can do it. I'll wait until after my surgery, but may have to go on Tamoxifen. My hair is also coming in thick and curly, about 2 to 3 inches long. I've always had a lot of thick long hair. I have been dying it light brown, I have too much gray and couldn't handle being gray. Been using Herbatint "natural" color. I used to get Keratin treatments. Not sure if I'll do that again. I would probably highlight it if I used to. Too much gray for highlights, need full color.
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08.20.2020
Hi,
Yep, I've got that, and like you, don't quite know what to do. :-( My hair was below my shoulders, so I
cut it a above my shoulders thinking it would take the weight off of it, but it didn't help. My daughter
is suggesting extensions, or what they used to call back in the day, a "fall". But the hair loss is mostly
on the top, and along the hairline around my face.
It happened while on letrozole, along with a whole lot of other side effects. I've been off of it for 1 month and a week, but my hair didn't start to grow back in that time and now I'll be starting exemestane.
''Following this thread, and if you hear anything about combating long duration hairloss, let me know. I'll do the same. Take care!
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Biotin is supposed to be good for promoting hair growth. My Mom's hair was falling out after the Corona virus and her stylist recommended it. Worked for her
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Garnersuz, I second the biotin but recommend Nature's Way Biotin Forte 3mg with Zinc. It has a blend of biotin plus various vitamins and minerals that is supposed to enhance everything. Recommended by dermatologists.
I also highly highly recommend Viviscal supplements.
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Tenacity83, welcome to this shitty club! The members are great but the entrance requirements truly blow.
I found that a lot of the side effects I had when I first started eased over time. Headache especially. It was bad for the first few weeks and then gone. So hopefully you'll find that as well. Fatigue and depression have been tough for me. I struggled with both pre-cancer, so not surprising. I'm on some things that help, including Wellbutrin and a thyroid med that I'm taking off-label to augment my antidepressants. Those two things were huge for me with energy. I'm also taking iron, vitamin D, and vitamin B12 since all were low for me. I think those help.
For nausea, I always have Zofran on hand.
In my hair recommendations in the last post, I forgot to mention Rogaine. There's one for women that you apply as a foam to your scalp. I think the only difference from the men's is that the color of the can is different. You can buy it on Amazon and it's inexpensive.
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Mellee- Thanks for the welcome! I am hopeful that the headache will go away. It's still early and I doubt I'm completely shutdown. My last period was in the end of June. My body bounced back quickly after chemo and I had been happy when my period returned a month later. Soon after, my oncologist decided I needed to do more than just tamoxifen. The two lymph nodes that were removed during my sentinel node biopsy had regression changes (?involvement prior to chemo). I'm also 100% ER+ with risky genetics. In addition, my pathology from my bilateral mastectomy found three areas of previously undetected DCIS stage 0 on the opposite side. OS+AI is probably important for me but I feel like I'm in mourning.
JRNJ- Good luck with the surgery and I hope your side affects settle down as well! I hope your body figures out menopause better after having your ovaries out. It should be a lot more natural than Lupron. Let us know how it goes.
Re: My attempt to prevent hair loss. I have been studying hair loss with AI. Biotin may be helpful. I have some biotin in my B-complex and I eat quite a few of foods with it. Omega 3's might help. I'm taking flaxseed oil. I questioned trying a DHT blocking shampoo (like Pura D'or) but I think I'll stick to something as natural, gentle and moisturizing as possible for now (my mother recommends Shea Moisture). I'll try only washing my hair twice a week because it's not oily. I probably need to give up my blonde highlights but if I start getting more gray, I'd want to try something. Maybe henna? I was just reading that henna thickens, strengthens and hydrates hair. Perhaps I might even try the clear variety sometime soon for added strength and shine.
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Garnersuz77, have you had your thyroids checked? Also iron levels?
Tenacity welcome!
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Hey everyone, curious for those who had/have joint pain...I started my OS/AI about a month ago and am having some lower back and right hip pain. Not debilitating, but bothersome (and of course worrisome since every ache/pain in my head is cancer spreading). Wondering if anyone has/had similar pain that eventually went away? Any tips on alleviating it? My MO says he thinks it’s likely from starting the hormone treatment and isn’t too concerned, but of course I can’t stop obsessing...
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No worries, I have the same. Started 6 months after AI with neck, hip, knee, elbow pain, all the right side of the body. I had them checked and they all came up with the names: Baker's cyst (athletes), tennis elbow (athletes), etc. so I'm having a very sporty right-side body
). On a serious note, please don't worry as much as I did and if your PCP says it is ok, it is OK. I have a feeling that estrogen deprivation pushes us on aches and pains style our grandmas used to have. Try to put a pillow between legs when you sleep to release some pressure. Other Ladies here may have other suggestions. 0
