Starting/declining hormone therapy Nov, Dec, Jan 2018
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Salamandra - yes I'm interested in joining the cancer diet game. I got on the scales yesterday and I nearly died of a heart attack, lol. Time to get off the couch and get moving
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Me, too!
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Awesome that we have so many takers! Let's do this! I just started the thread here:
https://community.breastcancer.org/forum/58/topics/870796?page=1#idx_1
Anyone else wanting to join in please do! Pup pics will probably populate that thread too.
Salamandra thx for kicking this off!
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I’m in on the weight loss support thread! Thanks to Pebbles and Salamandra for getting the ball rolling. I’m waving hi to all of you... I’ve been reading your posts every day, but haven’t had much to report. No news is good news, I guess! I’m also sending a warm welcome to the newer people here. Our group varies widely in terms of life experiences and treatment choices, but I have found so much support here.
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Oy. Just posted on and favorited the new thread.
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I am dieting too, i'm trying to follow the Keto diet and it gets easy as i progress however a week ago i got out of ketosis and it is not easy to get back in. I will follow with you along, ladies! I need to find that thread.
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Hi applejuice - the thread is here and with many familiar faces from this one! Come join! I just posted my recipe for almond butter cookies with no sugar to the thread.
GreenHarbor and ingerp and others - glad to see you there too!
https://community.breastcancer.org/forum/58/topics/870796?page=1#idx_24
Hpfull - on the time of month question, just came for me so after 29 days when I used to be very regular at 25 days. I called my husband and said I have good news and bad news - the good news is that tamoxifen has not kicked me into menopause yet, and the bad news is that tamoxifen has not kicked me into menopause yet lol.
Because it’s the weekend, we can all use a pic of Domino getting a bath!
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Hi
Applejuice & Pebbles - A long time ago when the 'atkins diet' was at its peak - I did it, even got the ketosis strips you pee on(?). I found the only thing I could eat and loose weight was meat, eggs and cheese, and pork rines for crunch. any veggies, any thing else thru me off and wouldn't loose the weight. Once I found the right balance I lost about a 1lb a day. Like applejuice said, hard to get there but once your in the groove - it gets pretty easy.0 -
Hi all, I just found this thread but see lots of familiar faces from my Feb Rads board. Started tamoxifen in March. A few hot flashes and I have noticed my hair falling out when I shower. Just had an appt with the MO on wed and bloodwork is coming in, my Vit D is very low. Havent talked to her yet (good and bad thing about online chart) but I'm guessing I'm going to end up on supplements. After doing some research I did find out the vit d deficiency does cause hair loss so maybe that's causing it instead of the tamoxifen. Also, just this weekend, I have started having some pain under my arm around where my nodes were removed..not for sure what's up with that!
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Hi, new to this site, but my second posting today! :-) I'm wondering if anyone knows or can point me to information on AI for low-positive ER. I had DCIS, couple unsuccessful lumpectomies and finally BMX with DIEP recon. Oncologist wants to put me on AI now, I'm not really understanding why.
My Pathology showed ER+/PR- (no HER2 test, kaiser doesn't do that for DCIS). But, my ER was only 1% positive with 'weak' staining. To me, that seems like its the same as negative. Plus after BMX, I thought my recurrence risk was basically the same as general population getting BC.
My oncologist says that 'studies show' that AI CAN BE helpful even at 1% positive. But osteoporosis is a potential side effect, which to me doesn't seem like worth the risk.
I guess I'm just trying to go verbalize my thinking on this and make a decision. I'm leaning towards no on the AI. Just wondering if anyone else is pondering this type of decision and how/what you decided...
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I would do some research. You have to weigh the risks and Benefits. I am currently wrestling with this myself as only six months of AIs has made me develop osteoporosis and ten percent loss of my spine. So for me along with all the other side effects this will likely be the deal breaker.
I am actually very upset as I knew it could cause some Bone loss but this seems a huge amount in. A short time even while taking fosamax for over two months of this.
Just press your oncologist for the actual risk vs benefits in your case.
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Julied1962 you might want to seek a second opinion or a new MO. Does the one you have specialize in BC? The first one I went to wanted to discuss chemo even before getting the Oncotype results and had his facts wrong because he wasn't up on the latest study. I asked my RO if he had any suggestions and he referred me to my new MO whom is great and on top of the latest research. One question you could ask is what is my percent of reoccurrence if you take something verses not. For me taking Tamoxifen has my risk of reoccurrence at 3% and if I go off of it it is 6% which isn't a huge difference in my opinion. I'm trying it to see how I do because of family history, but feel okay that if my quality of life isn't good then I can stop and my chances don't increase by to much. Good luck.
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excellent advice! Then you can make an informed decision.
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Hi Everyone,
Hi Jen2Mom - I take vit d-3 prescription. And my armpit where nodes were taken from hurts everyday. Its never stopped hurting since Aug 2017. (BS said it was the nerves were cut - if I havn't had relief by now, I won't) I forget to stretch - that helps when I do.
My memory is so bad, I can't remember the technical names of anything anymore. I just know that my cancer was hormone driven, so taking Tamoxifen was necessary.
Started Tamoxifen 10mg (without Dr approval) on April 2nd. Plan to stay on this amount for several months to ease into it.
I declined taking Nerlynx and Radiation. The percentages just were not worth it TO ME. Everybody is different! take care
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I am in a similar situation, .8cm with clear margins - no nodes, no HER2 and just finished radiation. After my research on tamoxifen, and AIs, I declined taking pills for 5 years, then moved to 10 years after breast surgery. I would be interested in why you decided to take drugs, even after diet changes. My reasoning for not choosing to take AIs is based upon known side effects. Each person has different metabolic environments, and I have 1) hereditary hemochromatosis (HH) increased iron overload since menopause; and 2) CLL SLL leukemia and lymphoma. All micro environments in your body are fluid and travel. I was asked repeatedly if I would take the AI, three times three visits. There is no cure for CLL leukemia and the treatments have changed and are changing - but the side effects are referred to as toxic and often unmanageable, with patients acquiring up to 50% infections that need hospitalization. What I found interesting from my breast cancer experience was the lack of' big picture' data and having different specialty doctors compartmentalized. For example, there are several pubmed documented compound heterozygous C282Y/H63D with support that iron accumulation in the breast increases breast cancer. And pubmed details how the lymphoid leukemia affects the bone marrow. As well as there being a risk from radiation for causing leukemia. So my reason for not taking after radiology hormone therapy is 1) a 💊 aimed at targeting estrogen is usually a weaker antigen and my iron ferritan saturation far exceeds the target therapy; 2) the toxicity and dangerous drugs coming up for CLL and the involvement from my own bone marrow full of B cell malignant rapidly cloning and already moved from 69% to 78% and I expect to now be (89%) do not need side effects from AIs and a very small cancer. The big picture 📷 considers all body process interactions and not a single event.
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I'm just a couple days past my three month Tamoxi-versary. Three bottles down, 57 to go. If side effects don't get worse than this I'll probably make it, although I could definitely do without them. This week I felt super cranky and emotional and my face seems to be doing something weird, breaking out or becomig permanently flushed or something. My thermostat is also apparently broken; I've had hot flashes on and off for the past few weeks, but the last couple days I just can't seem to get warm enough. So it's either the tamoxifen , or I'm getting some sort of bug.
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Hi everyone -- It has been AWHILE. Sorry I haven't been here and of course I'm not caught up, but need to post. Things are not going well.....sorry this will be a "bit" long but I need some support.
I don't even know where to start.
I had previously decided to forgo Tamoxifen (for many reasons: Any Early 40's Declining Tamoxifen? ) back in Dec and start on EstroDIM instead, while I sought out a new MO. Started it just fine Jan. Had quite a few SEs though - tons of joint/bone pain, hot flashes like crazy, night sweats, dizziness, breast tenderness, but all of that seemed to gradually lessen.
In the meantime, I found a new one MO. LOVE her. She is the best. Totally happy with her, with her plan for my treatments, etc. During our first appt, I learned that my recurrence odds (28-35%) also INCLUDED the same rate of developing METS. I was not made aware or did not understand this from my prior MO. It was like being dxd all over again.
So, after that appt, some blood work (because she was IN FAVOR of tracking tumor markers!
), etc, I gave Tamoxifen a lot of thought. My new MO had offered to start me on 5mg daily and see how things go. She was just honestly concerned for me, especially given my chronic illnesses and immune disfunction, and now I understand why. I guess I thought that if it came back it would be in my breast and well, there were things that could be done, but facing 30% odds of METS at 41 was shocking. I decided to start 5 mgs Tamoxifen.
Started it on 3/30. Long story - it had taken nearly 2 months (Feb/Mar) for my new MO to convince my dang Psychiatrist that my Cymbalta would not alter the effectiveness of Tamoxifen (due to recent research Tamoxifen and Antidepressant Drug Interaction in a Cohort of 16,887 Breast Cancer Survivors). I am not of fan of my mental health provider but alas am stuck with her. Just glad she got on board finally.
While I was waiting for them to come to some sort of agreement, I had a crazy happening.
My R (cancer was in the L) breast began swelling up out of nowhere, and on the inner center from nipple to sternum, it hurt and turned red. Looked like brand new blood vessels, and then at times a spreading sunburn. There was nothing to explain this. It was bizarre and scary. I took picts. Went to my MO the next day. My MO ordered a Mammo/US for the R breast. It came back "normal" but continued to have these symptoms for another 2 or 3 days. Apparently no one is concerned about this since the scans were clear, but in the back of my head, I want to know why this happened. What does it mean? Has anyone else had this happen?Anyway, through all of this I am still suffering daily from Rads effects, even though I finished in Oct. The Rads Fibrosis, Breast Lymphedema, and now recently added to the mix is Rib Dysfunction/Costochondritis, cause me many side-effects and pain, which all have me going to my Breast Cancer Rehab PT and Acupuncture weekly. Plus, I am still having to do 45 mins of LMD and stretching/mobility exercises daily, on top of wearing my Breast Lymphedema prosthesis for at least 6 hrs a day under my compression bras just to keep the side effects and pain "manageable".
It sucks.
On the great side, Acupuncture has helped me sleep again! It's been years since I've slept through a night with only waking up 3-4 times, instead of about 20 or more, or being up for hours at time with insomnia. So yay for Acupuncture. I would suggest it to anyone is dealing with cancer side effects, lymphedema, radiation pain, fibrosis, etc.
So, back to the Tamoxifen. I've been on it (5mgs) for almost 3 weeks. I'm having increased pain in my bones/joints again, similar to the EstroDIM. I expected this. Hopefully in time my body will adjust again. Other pain/zingers have been happening in my L breast in the scar areas, so that is new for me. They had mostly gone away since Dec. I guess with Tamoxifen there can be flares in the first few weeks, hopefully this passes. But the scary thing is this.....alcohol intolerance.
For example, just 2 months ago, I could open a bottle of red wine and have 3-4 glasses and be totally fine. No hangover. No spins. No nausea, etc. Not that I did that on the regular, usually I go weeks without a drink. Then I'll have a weekend and have a glass of wine or 2. No biggie. Now, I had ONE small 4 oz glass of the same brand/type of red wine and was noticeably nauseous within 15 mins or so, and then retching horribly within the hour mins. Was flushed. Dizzy. Sweating. Then in a few hours, diarrhea. Like I said, this has NEVER happened to me EVER. I had a great tolerance, even just recently. Then enter Tamoxifen and bam, this. I carefully tried 2 other times to have a bit of wine, different bottle, different kind, and same thing happened. It blows my mind. If I can't drink a glass of wine every now and again, I'm going to be a sad lady.
Has anyone else experienced this in regards to alcohol intolerance? I messaged my MO about it and they aren't concerned. Just told me not to drink. My thoughts were, well, ok, but why is this happening? Isn't there a reason? Is my liver ok? I don't know. SMH.There is some good news in the mix. I did have my first 3D Mammo of my L Breast last week, as well as my baseline Thermography and all was CLEAR! Yay! One down, many to go! Next up will be my Breast MRI in Aug. Fingers crossed that will be clear too!
Ok, so I know that's alot. Thanks for reading everyone. I'll try to catch up when I can. Life has just been so hard the past few months and I had to closet myself away and try to not think so actively about damn cancer every day. But I'm just so confused now, I need a little bit of moral support and hopefully some of you have some ideas or similar experiences to share.Hugs and healing vibes to all...
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Spoonie!! Just glad to hear from you. Will respond in more detail later and to everyone but thought you could use a Domino getting a bath pic with all that’s going on.
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Hi, just checking in. I’m 4 weeks post final chemo, no radiation. I’m starting 20 mg Tamoxifen today. I’m planning to take it at night before bedtime. My Onco only told me the possible side effects, didn’t recommend any supplements to take. I kind of scared to start Tamoxifen because still have muscle soreness ( leg & arm) due to chemo.
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SPOONIE!! It's so good to hear from you! No need to apologize for not being here for a while. I can relate to not wanting to give any more space in your head and life to cancer. I'm glad to hear that you like your new MO so much. It certainly sounds like she's been taking good care of you, and that she's been a good advocate for you with your psychiatrist. There is a big group of women on this thread that started their tamoxifen or AI at a lower dose and gradually increased it, with the hope of reducing side effects. Many of them have had success with this. I also experienced some increased twinges and zaps in my breast about 2 months after finishing rads. According to my surgeon, rads makes the pectoral muscles shrink, which pulls on scar tissues. Mine went away on their own in a few weeks. I'm happy to hear that acupuncture has helped you so much. I've also struggled with insomnia at times. Lack of sleep always seems to make every other problem in my life worse. I haven't experienced anything like what you described on your right breast. Maybe someone else here has? Good for you for getting it checked out right away. I haven't had issues with alcohol intolerance. When I was first diagnosed, my MO advised limiting my alcohol to 1-2 drinks per week. I really thought I would miss it more, but I haven't. Perhaps things will improve the longer you're on tamoxifen. I can understand your frustration with not having more specific info from your MO about your breast issue and alcohol intolerance. I'm a creature of habit that likes knowing what to expect. Being diagnosed with cancer made me realize how little control I have over my life. It's a scary feeling. Your MO sounds conscientious from the way you describe her, and not like she's brushing you off. If you're still concerned, check back with her. You've shown such strength to have made it this far! Sending a big (but gentle) hug to you; do keep in touch when you feel able.
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Hi Spoonie,
It was so, so good to hear from you! Great news on your recent CLEAR scans and your kind and understanding new MO! Working with someone you like, respect and trust makes a big difference and finally you will have that good relationship.
Wow! The alcohol intolerance is really strange. Like you, I would want to know why it is happening...maybe someone on this thread can offer more information. I occasionally/rarely have a wave of nausea but it is not terrible and not related to alcohol. I do think it is a SE of letrozole though.
I had other SEs when I started letrozole that were not horrible but I think they have lessened. Hopefully, if you can give your body a little more time to get used to the Tamoxifen, your side effects will lessen too.
I will second your recommendation for acupuncture. I am so glad it is helping you. Relief without putting more chemicals into your body! I too, had a lot of success with it helping pain. I had four treatments for shoulder pain, due to my frozen shoulder, and was so happy (and relieved and even a little surprised) that acupuncture helped me. Because I no longer have nighttime shoulder pain I can sleep a little better. I still wake up at least once in the night and sometimes I stay awake for a long time. I also wake up really early and sometimes if I read I can fall back asleep. I feel like I desperately need more sleep and if I go back to acupuncture again I will ask for help sleeping. it sounds like you could still use more sleep and maybe it will continue to improve. (PS-my shoulder doesn't hurt but it's still frozen! My PT said this week was my last treatment because I am not improving after three months and insurance won't pay if there's no improvement.)
Thanks for checking in on this thread again and write when you can. Take Care.
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Spoonie! I too have been absent from this thread... I'm on Anastrazole, but have experienced a huge shift in alcohol tolerance. I can barely sip one glass of wine anymore. I've actually switched to beer bc it's the only thing I can handle. I'm sorry you've been struggling!
I was dx w lymphedema as well. It started in my breast, but moved into my arm, trunk, and back. I think it's a result of having a huge hematoma that left a hard, rubbery scar thingy. Rads made me swell up a lot and my breast couldn't drain. I'm doing LMD and exercises daily, but I get swollen for seemingly no reason.
Domino! 💓 and love to all!
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Wised, I’m so glad you checked in!! Hearing from both you and Spoonie has made my day. I think of you each time I’m on this thread. I’m so sorry to hear you’ve also been dealing with lymphedema.
Pebbles, the photos of your sweet paw family make me smile. Keep them coming!
Sending love and strength to those of you who have been struggling. Actually, I’m sending love and strength to ALL of us. We have each been through so much
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Hello to all those checking in and sorry for the troubles some are having. And sorry if this is a repeat but I wanted to reiterate how important the hormone therapy is in preventing recurrence--often more important than chemo and Herceptin. Here is one of several good predictor tools out there:
https://breast.predict.nhs.uk/tool
I am *really* sorry to hear about the alcohol intolerance, Spoonie and Wised. That would make me really sad! Have you tried white wine? I know it's a little gentler on the digestive system. (Red wine tends to give hubs sleep problems but not white.)
I'm about 4.5 months into the full dose of Anastrozole and things are not too bad. Still a little stiff when I get up out of a chair and various other little tweaks but I think keeping up at the gym is really helping. I've also gotten my mobility back in the shoulder on the side I had surgery on, which I'm attributing to the two days of <pretty gentle> yoga I do every week.
I have my first follow-up mammo next week (aiyiyi!) and two more Herceptins and then I'll be finished with active treatment. Looking forward to just taking the one little pill every day. :-)
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Purplecat, I have hot flashes that alternate with freezing flashes. The freezing is so intense that I occasionally have to use a heating pad or take a hot bath.
Library girl, I can't believe they can't find a remedy for frozen shoulder. Seriously, the side effects from breast cancer tx are terrible. Have you noticed that the doctors seem unconcerned or uneducated about this? I'm thoroughly annoyed.
Ingerp, my experience on Anastrazole is similar to yours. I had to force myself to take it the first few weeks, but I notice that I'm tolerating it better now. The waking up feeling like I'm 90 is tough. I'm having a hard time getting motivated to exercise because I'm stiff and sore.
Love and hugs to everyone especially Domino.
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Wised! Good to hear from you too. Work is busy so I'll pop in with a more detailed response later but here is Domino AFTER her bath for you.
And Anxious789 - you might want to consider starting tamoxifen athalf dose instead of full dose right away. Like GreenHarbor said, there's a group of us that did that and we all seem to be faring better with less side effects.
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SPOONIE!!!!!!! and WISED!!!! So good to hear from you both
Spoonie- First off no need to apologize
I am glad to hear that you have found an MO that you love. It really sounds like she is someone that listens and advocates for you, that has to make a huge difference. It is great that she is supporting a slow start on the tamoxifen. As others have said, a lot of people have had success with that. The alcohol intolerance is curious. When I first started on the tamoxifen I had a lot of nausea in general, my OB said something to the effect that my body was using more estrogen in my gut. (I am sorry I forget exactly what she said, lol I was mid emotional breakdown when she was explaining it:) I had to take a break from tamoxifen due to an eye issue and when I started back up I changed from taking it at night to the day. I still am getting way more heartburn than normal, but the nausea is less frequent. I cannot imagine how scary that must have been to have the symptoms pop up in your L breast. So glad they got you checked out so soon, and yay for clear scans, but knowing what the heck it was and what caused that would help ease your mind for sure. I too am sending gentle hugs your way, check in or just come to rant when you can. You are always in my thoughts when I come on these threads!Wised- So glad to hear from you! I am so sorry you are dealing with lymphedema as well. Damn these SE's.
Anxious789- Hello, and I hope you breeze through with minimal SE's! Sending good thoughts as you begin this part of your treatment!
Pebbles- I must say, wet Domino made me laugh, and I love that he smiles through his bath time:)
Just a question to those getting acupuncture, is this through your cancer center? How would one go about finding a reputable practioner? Also is there any of the needles that go on the cancer side? and would that be contraindicated due to lymphedema risk?
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Pebbles - I have never seen a dog look so happy to get a bath.
Spoonie, Wised - great to hear from you guys! Have you been drinking red wine? I think a lot of people have bad reactions to red wine and are still able to tolerate white wine or other types of alcohol. I miss wine but I get asian blush so I have no business drinking anyway. Quitting drinking has really reduced my restaurant tabs, so there's that.
Dani - I got acupuncture though my cancer center, and they put needles on the cancer side. Apparently they have found no link between acupuncture and lymphedema.
I can't remember when my last SE update was, but I had been dealing with insomnia, hot flashes and cognitive problems as my most major side effects of anastrozole and zoladex. I still have some insomnia, though the exhaustion strategy seems to work every time. So I try to work out most days and if I work out hard enough I'm able to sleep through the night. The hot flashes got really intense for a while but I get fewer now and they are less intense than they were, so they are nothing but a minor annoyance. The cognitive problems seem to be getting better, I talked about this with my MO yesterday at my appt. He suggests waiting a bit for things to settle out. He said I'm still purging the chemo, which probably caused some of it, and the anesthesia from surgery puts you out of sorts for a few months as well. So I'm just going to suck it up a bit longer, and maybe try self-medicating with sudafed on days/times when I really need to focus (this is a side effect of sudafed that I've noticed in the past and I've used sudafed for focus and wakefulness in the past successfully, but honestly I've never run it by a medical professional so by no means do I recommend it to anyone else). As for the infamous joint stiffness that seems to be the most common SE of this medication...that is completely absent. I just have not had it at all. I had a stiff back for a while there but I was also starting up my running routine again and as I've built my core muscles back up that has gone away. So I'm lucky in that respect I guess.
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My exhaustion through radiation? I think that was probably the tamoxifen! I wish I had waited to start, though I had good reasons at the time. And it wouldn't have made much difference I suppose, except make me less grumbly at the radiation.
I'm about to start my third brand of tamoxifen.
Thankfully the stomach stuff seems to have calmed down a bit. Maybe I really will adapt.
For now, though, I still feel like I'm in active treatment. It's having a real impact on my life. It feels jarring to me that the system considers me done, and work/social stuff does too.
I hope that my body will adjust more over time and maybe the new brand will help and then maybe I'll feel differently. But for now it feels bizarre that taking this pill every day is not considered active treatment. Like, when I took pills for depression or ADHD, I'm in active treatment for those things. If anything, tamoxifen is even less of a maintenance drug because it does have an expected end date.
Anyway, rant over! So nice to see all the updates on the thread and familiar faces!
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Hi Everyone -
I'm still on 5mg of Tamoxifen. I plan to go to 7.5 May 1st. (breaking in quarters) Then each month s-l-o-w-l-y increase.
Spoonie mentioned the alcohol SE. I hadn't had anything to drink for a long time and did ONE shot of whiskey and had diarrhea.that afternoon. coincidence? I don't think so. My daily headaches have slowed down, but my knee pain (And crackling) has increased - however the other day I woke up pain free.(that was a first) Yesterday my Left arm pit (lymph node removal side) hurt the worst it has ever. My entire left arm throbbed, plus I was dizzy and had a stomach ache - all the signs of a heart attack for women. Today, its the usual normal - feel like a golf ball under armpit. And Yes - Unbearable hot flashes then I'm freezing. Its a vicious circle.
Wise- I carry little disposable hand warmers that you can get at Walmart - when activated they stay warm for about 10 hours.I don't have an appetite. Nothing sounds good except chocolate. My Physiatrist gave me Ritalin to help with my lack of energy. I am unable to take any kind of antidepressants because of the SE's. Take care all - Hope less SE's.
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