Starting/declining hormone therapy Nov, Dec, Jan 2018
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Thanks all for the messages and kind words. Glad to know I'm not alone in the alcohol weirdness. Definitely has been wonderful to hear from so many of the faces I've come to think of as my second family! Even though I've been away, you have all been on my mind the past few months. I'm slowly catching up on everyones' story. Relieved to hear so many are doing well or adapting to the various treatments.
LOL about hot flashes...I live in MN. When I started Estrodim, three weeks in (late FEB), I was driving to my MO appt. It was around15 degrees out. I had all my car windows down, no jacket on, and felt FINE. I drove that way for about 15 mins until I had stopped sweating!!!! Thankfully those have past now. I still have night sweats which are ungodly, but at least they are only 2-3 times a week.
Wised - So sorry to hear about Lymphedema becoming your new companion. Uggh. It blows doesn't it?!
How has your rehab in general been going? Have you found things that are helpful - compression, acupuncture, LMD? Do you go to a Rehab Therapist often? I would be lost without mine. It's odd that you and I both have the huge alcohol shift AND lymphedema, wonder if it's a genetic similarity. But am glad to hear I'm not alone! I don't have any whites or beer on hand, but will give it try tomorrow night for Game of Thrones. LPLlibrary - I'm so happy that Acupuncture has been helpful for you too. I was really sufferring so much from the cording & lymphedema pain beforehand, now I can actually move and not automatically be reminded that I have cancer. Definitely talk to your therapist about working on sleep. It took a few weeks to see the results but now it's on maintenance and I can fall asleep in minutes and stay that way for a few hours now. It's ammmmmazing! Wishing you some solid zzzz's soon! Frozen shoulder sounds awful and I think that's BS honestly that because there's not improvement insurance will not keep sending you to PT. Could you get a 2nd opinion from a different PT clinic? Maybe they might have other ideas or techniques to try?
Ingerp - Good luck on your first scan next week! Keep us posted! Thanks for the tip about whites rather than reds. I'm going to give it a shot this weekend. Fingers crossed.
Pebbles -- Thanks for the Domino love! Always a pure joy to see her happy face! And congrats on the addition to the family - your little embryos. So glad that was a success for you and the hubs!
Dani - About Acupuncture, I was referred to it from my Cancer Lymphedema Therapist. Thankfully my insurance covers 24 appts, and then after that it needs prior-auth. I was able to go to any Acupuncturist I chose in my location, however my PT did give me a few suggestions. As far as needles in the arm on the side of the LNB, she places them there without issues. I think from my research, since the needles for Acu do not add fluid or remove fluid or change the pressure, very rarely even causing a pinprick of blood after removing, it doesn't affect the Lymphedema risk/issue. I'm no doctor, obviously, that's just my brain. LOL. If you are interested in going to Acupuncture, I'd get in touch with whomever was your care coordinator in general or you cancer social worker, if you weren't seen by a PT or After Care Therapist. I'm betting they could give you a few good names to start with.
Hapa - Brain fog/cognitive issues are awful. Sorry you're going through them. I can totally relate to finding tricks that work for you, like your Sudafed, have my own that have helped me through my Spoonie life. LOL. I hope that your trick will work again and get you through the next few weeks. Hopefully by then your body will be settling down a bit more and your brain will feel like it's old self. Keep us posted. And congrats on missing out on the joint pain/stiffness! There's sunlight at times, right?
Salamandra - Rant away!!!! I TOTALLY agree with you about feeling like I am still in active treatment and it boggles the mind that insurance, doctors, friends, etc think all is well and good. It's very bizarre and as you said, jarring. What a bummer to have gone through 2 brands of meds and still be going through the ringer with SE's. Here's hoping the third is the charm!
RLjes - I'm sorry that you're struggling with those SE's. Hope with time they will lessen. Hang in there. Ugg loss of appetite would not be fun, but maybe I'd lose a few pounds. I think that can be a side effect of the Ritalin you're taking from what I remember. Not sure what can counteract that. Bummer. too bad we can't exist on cholocate alone right?! You'll have to let me know what happens next time you have another shot of whiskey or alcohol in general, if you decided to try out your theory again, that is. Sounds to me like you have a change in tolerance too. My MO keeps telling me that there are no known SEs like this regarding Tamoxifen, but they aren't getting the big point I was trying to make -- that a change in hormones seems to affect alcohol tolerance. I can find post after post of it in women who are in Menopause. SMH. She told me that my liver enzymes were fine, but they were tested BEFORE I started taking Tamoxifen, not after. So I made a appt with my Primary to talk follow up with this and dot my I's and cross my T's. I'm sure I'm fine, but I know you all get it, paranoia until an answer is found. LOL but not really LOL.
Ok, off to do some binge watching on Netflix while I do my daily LMD and PT. Joy of joys!
Wishing you all peace, sun, and healing vibes!
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Ha- Spoonie, you made me laugh. (I used to live in MSP 20 years ago) It was 17 degrees out last month and I had all the heat off (except utility room and bathroom to keep pipes from freezing) and my bedroom window open. I had to put a coat on my dog. I was very comfortable. I dread this summer.
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Hey you guys -- I'm freaking out.
Went to my primary this week because of the alcohol intolerance issue, she ordered a bunch of blood work. This same blood work (prior to adding 5 mg daily Tamoxifen) was FINE, totally normal, all in healthy range.
Now my WBC is severely low, while my Basophils/Eosinophils are elevated. My kidney/liver functions are all over the place, and my cholesterol panel is not looking good.
None of these were a problem on 2/13 when all these labs were done at my MO appt.
WTF?!
Trying to stay calm and wait to hear what it all means but of course Google says lots of things about these tests and of course breast cancer recurrence/METS is listed, plus NAFLD (side effect of Tamoxifen)!
Help me calm down yall.
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Spoonie77 Hugs to you as you get through sorting out the test results and figure out what's going on. I think the stress of waiting and wondering and dealing with our anxiety is one of the secrets of our sisterhood that outsiders can't possibly appreciate. Hopefully either PCP or MO will now take the lead on guiding the test interpretation and follow-up for you. I send you strength and warm supportive cyber hugs as you get this figured out.
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Spoonie when do you have a follow-up? Try to stay calm until then.
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Thank you so much HikingLady. Anxiety is surely our secret handshake! LOL.
Ingerp - I'm waiting for a message or a call from my Primary today to discuss the labs. I see my MO again in the middle of May.
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Spoonie, STEP AWAY FROM GOOGLE! It is not your friend. Take a deep breath or 5, and wait for your PCP to call back. Couldn’t hurt to ask your PCP to send the results to your MO. We are all waiting with you and sending our most positive thoughts for a simple explanation.
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You're right GreenHarbor, of course. No more Google.
Went on a long walk with my puppers, the leaves on the trees are starting to bud, so it was pretty. Going to see EndGame at the theater in 2 hours, and that's a 3 hour long movie, so hopefully by then, I will have a message from m PCP explaining what's going on and what the next step is.
I'll keep y'all updated when I know more. Thanks everyone so much for the support. Waiting is truly the hardest, glad to know you are all here.
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So sorry Spoonie. We all know and agree waiting is sheer torture. Hopefully you will get the call today. I’m really anal about doctors promising to call and then don’t. Plus it’s almost the weekend.
Keep us posted.
Diane
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Spoonie - if your blood work was so recently really good don’t freak out. Maybe tamoxifen is having a side effect and you can try stopping for a few weeks, measure your blood work again, and see if there was a cause and effect there.
Enjoy Avengers: Endgame (reviews are amazing!) and keep us posted. I think because you’re bloodwork was fine in Feb. that you’re fine
Pebbles
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Spoonie, I agree with Pebbles. Also this could just be a passing thing while you get used to the drug. Take care and let us know what your PCP says
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Hi gals, I am recovering from a very painful ovarian cyst rupture. After an ultrasound,, they found 3 more cysts on my left ovary (all around 4cm) and a 2cm on my right. This is a big change from Jan when I only had one small one on my right side. I've only been on tamoxifen for about 6 weeks. After doing some research, cysts can be a side effect. I'm going back for a recheck in 6 weeks but didnt know if any of you had similar experiences?
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Thanks everyone. Not sure what to think.
Heard back from my PCP. She is sending me in for an abdominal CT next week.
Either way, I guess I will know one way or another if there's something going on. Maybe I'll finally find out where all this pain in my ribs/spleen is coming from. Have had that going on since the end of Feb and no one can tell me what is the reasoning. Thankfully I'm used to living with pain.
She also believes I've developed Vasculitis. In the past 3 weeks I've had weird tan/reddish circles (some as big as a plum, others as small as a fingertip or a pea) develop on my lower legs. Right one first, then the left. They aren't brusies, aren't dry or textured, just feel like skin, and they don't hurt or itch, they just appear for a week or two, and fade out as new ones appear. Never had this before in my life either. She chalks it up to the Tamoxifen. It's just weird.
Anywho, that's the update. I'll keep you posted as I learn more. Hope everyone can have a nice weekend. I'm gonna do my best. Watching EndGame was a good start. So glad I had that distraction!
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Jen2Mom --> Sorry about what you're going through. Cysts sound like a scary thing to be undergoing on top of everything else. I wasn't aware (go figure!) that these could be a SE of Tamoxifen. I wish I could be of help, but I've never had this experience. Hopefully someone else on the boards have and will be by soon to share their story with you.
In the meantime, have they been evaluated as to if they are or aren't malignant? It seems from studies that some resolve on their own while others don't do so until Tamoxifen is ended, and while still others need surgery. Has your dr shared their thoughts about what comes next after the 6 week wait? What are your thoughts?
Thinking of you. Hang in there. You're not alone.
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Spoonie, thanks for checking back. Keep us posted about the CT scan.
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Ugh Spoonie—that all sounds weird. Hoping you get some answers soon. (I saw Endgame last night too!! Fun but long movie!)
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Hello, ladies. I rarely post in this thread, but just wanted to pop in to wish good luck to Spoonie and Jen2Mom. I hope your troubles will go away soon!
Spoonie, have your MO thought of switching you to an AI? Maybe you will tolerate it better....
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Jen2mom- sorry you are having that SE! That sounds painful. I cannot help with any input as I have not experienced this but wanted to say sorry you have to deal with this! Did they say if this could continue?
Spoonie- I so agree with anxiety being our secret handshake! so well said. Anxiety is a "cancer gift" I would like very much to return. I hope they get some answers from the CT, I am sure next week feels like forever away. I am waiting to have a new lump in my foob checked out next week and it is consuming. Good for you for employing distraction techniques
Let us know what the results are, gentle hugs to you as you wait, cause waiting just plain sucks. Is your MO and PCP in close contact with all these results? 0 -
Hi Everyone
Jen2Mom - Nothing to do with Tamoxifen, but 30 years ago I had several cysts rupture in ovaries - I understand how painful that is. (as I was curled up on the floor dialing 911) I had a hysterectomy after that at age 35.
Spoonie - sorry to hear about bloodwork, please keep us informed. I'm going to restart my Tamoxifen next week again at 5mg. Your story will perhaps give me incentive to find a caring MO.
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Well, Wed is the day.
My CAT Scan (abdom + pelvis w/contrast & chugging 24 oz of water in 15 mins!) is at 2 pm. Pretty sure I won't know any results until Thurs or Fri. I'm not even sure what to hope for -- I mean I obviously DO NOT want there to be METs but I DO want something to show up that is fixable to get rid of this constant awful pain and fix my WBCs/labs. What is the fixable thing? I have no idea when it comes to kidneys, liver organs but I sure hope there is something.
Fingers, toes, eyes crossed. I'll update y'all when I hear something from my PCP.
RLJes Danni --> Good luck on your restart. If you do look for a new MO, I hope you can find someone kind and open to you. We have enough stress already, our MOs shouldn't add to it. Although I do totally understand staying with what you know too. Sometimes that's less scary and less stressful. Pros and cons boths ways in the short term, but maybe more pros in the long term.
Dani ---> When do you go in to get your new lump checked out? Will you be seeing your PS or MO? Hope the news is good. Keep us posted, ok? You are in my thoughts.
As to your question, "Is your MO and PCP in close contact with all these results", thankfully they are. I made sure that both offices transfer all records between them when I am at a visit/labs. I'm so thankful my MO is amazing and caring. I'd be so stressed dealing with all of this now with my first MO. Whew, sigh of relief!
InnaB ---> "Spoonie, have your MO thought of switching you to an AI? Maybe you will tolerate it better...."
She did mention that could be an option if Tamoxifen doesn't pan out. I'd need to do Lupron injections with it I believe. It's good to know there are other treatments if it turns out I can't tolerate this, even at 5 mg.
Thanks Inna.
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Scan is finished. Now to wait. Ugggggggh.
In the meantime, for those of us who will be followed-up with MRI's alternating with 3D Mammos, I wanted to share a piece of info that I learned today from DJmamo today:
"The timing of the MRI according to a patient's cycle is critical when doing screening breast MRI (especially if extremely dense) as the normal tissue enhances more during certain phases of the cycle and may mask a very small abnormality but in our facility if there is already an obvious visible abnormality we were not so strict with the timing so we sacrificed some degree of sensitivity for speed."
https://community.breastcancer.org/forum/83/topics/858196?page=44#idx_1317Apparently around 10 days after the start of your cycle is the time to get this MRI done.
I'm planning on asking my MO about this to verify before I set up my Breast MRI for this summer.
Hope this helps someone else as well.
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Thanks for sharing this. It is something I learned through having my MRI shortly after diagnosis. I had several satellite lesions light up, went back for biopsy and some were not there. They told me it was because of where I was in my cycle when I had the original scan. I had no idea that was a possibility.
Spoonie- Hope you get the results soon and get some answers! I will be getting a more formal US for my lump next week. She did one in the office but said they could get better images at the breast center if that’s what I wanted.Fingers crossed for both of us🤞
I was asked at my BS follow up how things were going with tamoxifen. I told her not well! Since restarting the insomnia and fatigue are getting progressively worse. She said maybe I should talk to my MO’s office to see if they have any suggestions. I see him in July. She also said that it is not the best practice but if you have a time where you want to feel better, such as a holiday or vacation I could take a break. She said that is better than stopping all together. I really am anxious to talk to my MO about exactly what my recurrence risk is to help decide if I can continue. This fatigue is really affecting every part of my life. Ok, enough of my whining 😁
Jen2mom- Are you feeling any better?
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Thanks for asking Dani444, I am feeling better. I go back to the gyn 6 weeks for another u/s to evaluate. I asked my MO if there was an alternative to the tamoxifen that would not cause cysts and she said I could do ovary suppression shots and an AI but thought the side effects of those outweighed the benefits right now so I'm just passing time till I have my follow up.
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Dani - is there any reason why you can't do OS + AI? I'm having very few problems with it. Hot flashes and some insomnia. Though I'm not that tired during the day so maybe I just need less sleep now? idk. Some brain fog which was worse at the beginning, but my MO isn't convinced the brain fog is all from the AI, he says the chemo is still in my system and the anesthesia from surgery causes cognitive issues for a while too. Regardless, it's mild and is not affecting my work as an engineer so I really can't complain. Anyway, I'm on anastrozole.
Spoonie & Jen - sitting here with fingers crossed for you guys.
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Hi Everyone,
Dani - please keep us updated about Tamoxifen, I'm going to start back up next week, again at 5mg. (My MO has no idea - nor would he care to know that I've stopped) That's a sad statement! Guess I'll just 'play Dr' and self medicate. Its the severe Fatigue that is why I stopped. It was as if I took a bottle of Nyquil. I had to stop to be able to drive to go to the grocery & Dr appointments.
I started out on Arimidex - and broke out in an itchy rash.
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Well, I thought I was doing reasonably well on Tamoxifen, but lately the aches I feel when getting out of bed have turned into excruciating pain. Yesterday it took me AN HOUR just to stand up. Today was slightly better, but I knew what to expect. It still took a long, painful time. It's like rings of weighted pain being placed around me from shoulders to lower hips. So I'm going to take a break from Tamoxifen for about a week to see if it eases off; if not, I'll have to find one of my other body parts to blame.
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When I was on Tamoxifen (5mg) besides feeling like taking Nyquil, my knees cracked so loudly you could hear across the room. AliceB - I was the same way - felt like 100lbs on my shoulders and the pain in my knees - I had to ease into the day. Very Painful.
Now that I've stopped Tamoxifen for 1 month, my knee pain is gone, and the fatigue is still bad but not debilitating. Trying to get all my running around must TO DO items done before going back on Tamoxifen. If 5mg caused this much pain and fatigue, I can't imagine what 20mg would do to me
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Wow - Spoonie, Dani, Jen - thinking of you and hope that you will get some satisfactory answers soon. Please keep us posted.
So sorry to hear a lot of you are not doing well on tamoxifen. The studies show that around half the women drop out a couple years in so while on the one hand it makes sense, on the other hand I just wish more of you would be having the smooth experience I seem to be having.
I don’t feel all that different on my 10 mg dose of tamoxifen. My cycle is not as regular but it’s still there, at least for now. Next week I’m off to Italy on the first proper vacation since this all started (so overdue for a holiday!) and I actually plan to keep taking tamoxifen! I’m thinking if my body is used to it I don’t want to mess with that, stop and have to readjust again, so...
Tucker and Domino send their support and representative expressions for both sides of the tamoxifen coin
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No news yet but thanks for thinking of me y'all. I was really really really struggling and emotionally a mess last night. Thinking that it's so tough to get the "ticking time bomb" idea out of my head. 35% chance of METs within 10 years w/o ET is scary. I just feel like they missed something or it's lurking and growing. Ugggh. Today is a bit better at least. Hopefully the scan will put my mind a little bit more at ease when I get the results.
I'll just add my voice to the others about 5 mg of Tamox just kicking my butt. I cannot fathom what 20 mgs would've done to me. The pain in my knees, hips, spine, and neck is just excruciating. I was thinking this morning as I tried to get out of bed and started to cry because of the pain and fatigue, that I don't know if I can do this. Walking is hard, my back feels broken after about 100 feet. Quality of life was already an issue for me before cancer, this is way worse. Le Sigh. Thankful I see my MO on the 21st and can talk it all over at that point.
Thinking of you Dani - hope the news is positive and nothing to worry about. Keep us posted.
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Thinking of all of you dealing with side effects, and wishing for some relief.
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