Starting/declining hormone therapy Nov, Dec, Jan 2018
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kec1972...the Breast Defend capsules are small, very light and easy to swallow. Hope this helps. Take care.
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Spoonie..I take large doses of gabapentin for nerve and bone pain. Not sure if you remember me but I also have multiple autoimmune disease which is very debilitating. Its the main reason I refused aromatase inhibitors from the start. I take Breast Defend in leu oft it. Anyway gabapentin does help but I have to take 600 mg four times/day and it doesn't really help until I take the third dose of the day. Better than nothing though. My pain management doc actually want me to take even more but I'm reluctant because it does make me drowsy and seems to affect my short term memory which is normally great without it. Hope this helps. Take care and feel better.
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Spoonie, I agree with Ingerp, I am AMAZED that you haven't given up already. I had migraines before BC but the ovary shutdown seems to have vanquished them. It's one good thing that has come out of this mess. Best of luck in getting this all worked out. My extremely unscientific and perhaps biased observations on this board have led me to believe that people have an easier time on AI than on tamoxifen.
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My Tamoxifen experience: Weighing in on the whole hormone medication conversation to share my experience. I had an easy time on Tamoxifen, for 5 years, age 46-51. It sped up my entry to menopause, so I certainly had some hot flashes and vaginal dryness and all that usual stuff, but no horrible pain as I see described here, and I'm so sorry that people are having to endure that.
Now Anastrozole: Now I'm age 61--I got a 2nd (unrelated, completely new) breast cancer DX age 60. On my AI, it now feels as though I've aged a bit. But, after 6 months now on Anastrozole, I have less joint pain than at the beginning. Also, I have more regular exercise, now that I'm finished recovering from surgeries and chemo. So, I think my body (or brain) 'adjusted,' and I think I'm more fit, so I'm more comfortable at this point. My MO told me all along to hang in there for six months and give my body a chance to get used to it, and it turns out, that was helpful advice, because it kept me committed to taking it for at least that long. I'm committed to it for as long as necessary, because it's a hugely important part of my TX, and also because I am tolerating it okay.
Managing my SE's: I have plenty of post-surgery and post-chemo discomforts, but the AI is tolerable, and I've found solutions. Vaginal atrophy? MO-approved use of Rx Estradiol cream + coconut oil. Aches and pains? 1 hour of daily exercise and better muscle tone has made my joints feel quite okay. Hot flashes? They are NOT as bad as during menopause. They warm me up, but don't ruin my life. Sleep? Well, it has been terrible for years, so it is not worse! I always wake up a few times, and sometimes can't get back to sleep. I sleep best if there is no alcohol in me, and if I've had my hour or more of daily exercise. I try to limit alcohol to 3x a week, and the evenings that I have a drink are the nights I sleep especially badly. I also sleep badly if I've had a lot of sweets, so I really avoid them. Sugar messes up my whole GI tract and my sleep, so I really try not to have much. Perhaps that's why alcohol---one of my few simple carb indulgences, has such a bad effect on my sleep!
For joint pain: While on my AI, Claritin has been completely not helpful for me, although I used it to good success to reduce effects of Neulasta injections during chemo last year. I tried Claritin a few times, as some people on this site mentioned it as being helpful for AI joint and bone pain, and it did absolutely nothing for me. What does help, is NSAIDS. I have arthritis anyway, and all my arthritis spots are grumpier on my AI, but not HUGELY so, just a bit more. If I'm achey, I take Ibuprofen, or Aleve, or my Rx Meloxicam, which is the same type of medication, but lasts 24 hours. I have found that the stronger my muscles have gotten, now that I'm exercising regularly, the happier my joints are. Much less creakiness and stiffness and complaining if I'm exercising every day.
Really doing okay on my AI: I'm so sorry to read all the very challenging and horrible-sounding SE stories. My own experience is that Tamoxifen was tolerable, and my AI this time is also manageable. I'm putting this out there for people who are wondering if it's All Bad---my story is Not All Bad. For me, the months of going through the surgical traumas and chemo were hugely unsettling, and threw me off my game physically and mentally. Now that I'm 'recovered' (ha ha... many psychological and physical scars remain, of course!!!) from those difficult things, and back to daily exercise, I'm finding the AI to be a little annoying, but not horrible.
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Thank you everyone for posting your experiences with Gaba. It gives me some hope that maybe it will dampen the pain. I am to start on 600 mg 3 times a day, so perhaps like you Dtad, it will help at some point in the day. I'm looking forward to the drowsiness at night kicking insomnia off of the field.
Ingerp -- Not sure how I haven't given up either but I guess, like so much else in my life, what other choice do I have? My METs reccurrence rate is 35% w/o hormonal treatment and that still scares me to death. Soooo I'll keep at it for as long as I can so I don't regret things if something does pop up in the future.
I appreciate the suggestions about keeping moving. Totally understand what you are all saying. I've had chronic pain all my life, including arthritis and fibro, and since adding cancer to the mix, the truth of that statement has been 100% proven and then some. So I keep moving, it may not sound like it from the prior post but I do.
I manage two small walks with my dog, plus errands/dr appts if I have them. At least a mile or more of walking a day. Plus then I have to battle through 2 hours (broken up into 15-20 min increments) of my cancer rehab PT for my lymphedema and fibrosis. If I don't do that each day, well I am in big trouble pain wise and LE wise. So yeah, that's 2 hours of on the floor, stretches, range of motion stuff, and manual lymphatic drainage massage. Plus a about 15 or 20 mins of yoga... all of this while fighting falling asleep on the floor in the middle of a stretch or in tears from the pain or wanting to blow up the entire world.
I tell ya, it's one good thing I'm single right now. I don't envy my furbabies sometimes! LOL.
So yeah, I guess what I'm saying is I do what I HAVE to every day and that includes moving and PT and drs appts but basically that's why my dishes and laundry and chores sit undone for days, because I'm just doing the bare minimum I must in order to not make things worse physically, if that makes any kind of sense.
I wish NSAIDS worked for this pain. I was taking 800 mg 4 times a day and it did nothing. My dr said long term it'd give me an ulcer and other issues, so she'd rather prefer upping my rx pain meds in the meantime to see if we can't get this under control in the next month or so.
Part of me also feels like I keep fighting all of this is because after that the next option is Lupron to see if I handle surgery to remove my ovaries. Even though due to my illnesses I'd given up hope of being well enough to have children, it's still been "there" in that I have the ability, and welp, with surgery, I wouldn't and that's another loss/more grief to deal with.
Just complicated and trying to just make it through one day at a time and not think weeks, months, or years in the future.
Thanks again everyone for your support. My mom and dad are heartbroken seeing and hearing me in so much pain, so it helps to vent it all here to you, instead of always to them and my other friends. It hurts them, and that hurts me.
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Hi all! I’ve been reading but not posting for a while
Spoonie, my heart is going out to you and all you’ve been through. I was on tamoxifen for about 3 weeks and I truly felt like I was a ‘in poor health 90 year old’.
I’m still not sure what to do about taking tamoxifen. I don’t know anything about ‘Breast Defend’ capsules-thanks for posting about it! I will definitely check into it.
Does anyone know the possible reason for a really low white blood cell count? I’ve never had it before and it’s been super low since early April. Makes me think of possible new cancer somewhere? I’m not a worrier, generally, but it’s crossing my mind.
Wrapping all you strong gals up in a hug for your support here!
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I have been on Tamoxifen for almost 2 months (next week is fully 2 months) and it can be said that I haven't had its side effects yet but I have been experiencing some unusual symptoms such as:
- hot flashes: not everyday or often, just sometimes I feel it while I am sleeping and a certain time of the day. It's very rare but it still exists. I never got hot flashes before I took Tamoxifen.
- short sleep circles: I have gotten sleep disturbance since I have taken Tamoxifen. I notify that I sleep better if I don't drink coffee on that day. I'm a coffee lover, so it can be a challenge for me not to drink coffee every morning. Also, I always wake up a few times and can't get back to sleep sometimes.
- vaginal dryness: not too dry but I can feel a little bit dryer. I have tried to eat food that is good to keep/increase vaginal moisture naturally such as okra (Lady's Finger), flax seeds, avocado...
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Hi All,
Spoonie, I know how you feel - I am so fatigued, I crawl from the bed to the couch. I used to walk my dog for a good 1/2 hour, now I'm lucky to make it 5 minutes. Dishes? I use paper plates. Its too much effort to stand at the sink to do the dishes. I spent an entire day at the ER to have a CT Scan of my lungs to see if my pulmonary Fibrosis was flaring up. plus bloodwork for the fatigue, nothing was out of the ordinary. In Desperation, I went to see an OBGYN. She prescribed GABAPENTIN. I'm starting out at 100mg a night. It does help me sleep better, its only been 4 days - still no relief from fatigue. My Psychiatrist prescribed RITALIN for the fatigue, it just makes me
twitchy and nervous. I also have Auto-Immune Diseases. May I ask what Yours are? I have Dermatomyositis, Scleroderma and Raynaud's. My Migraines subsided during chemo, and now are back with a vengeance.BUT- my fatigue and bone pain isn't from Tamoxifen. I stopped taking it over 2 months ago. Going to start tonight Again, with 5mg.
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sugarmaple..some reasons for a low white count would be a virus, chemo and autoimmune disease. I'm not sure why you would have it all of a sudden though. I've had it for years because of my autoimmune issues. Not saying that's the case with you just trying to shed some light on the subject. Good luck and keep us posted
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Hi Girls - please read my post under "Newly Diagnosed"
I have the worst luck than anyone I know
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Spoonie- I understand wanting to throw out that bottle of tamoxifen and get back to feeling like we did before all this crap. I really hope the gabapentin helps your pain. The fatigue and lack of sleep is enough to deal with and so effects your QOL in of itself. I know you have said you have no other choice , but I say it takes a certain amount of determination and grit to face everything you do everyday and I admire that about you. And it is ok if the dishes and laundry sits for a day or two extra while you navigate getting this treatment worked out. But I also understand it is so hard to not be able to do what you normally do. I am glad for you that you have an MO that is taking the time to work through this with you. Keep us updated when you feel like it.
sugarmaple- Did they give you any indication as to what might cause the low WBC's? I hate that we have to deal with these SE's from these meds! Have you talked to your MO about possibly not continuing the tamoxifen?
rljes- I might have to take the idea of just using paper plates! I am sorry you are dealing with fatigue as well. I am glad you are getting some better sleep with the gabapentin, and hopefully it will start to lift your fatigue.
Hikinglady, Appyfan, greenharbor, hapa, kec1972, innaB2018, thank you all ( and anyone I missed) for your responses and sugesstions. They really mean the world to me. I am going to seriously think about getting a second opinion, and I have started the effexor. I am going to give it a chance and maybe it will make a difference. Survivorship is hard and I need an MO that I feel is supporting me. He also made the statement that all women go through these changes, but it seems to me it is just not the same. Not all women are on medications that change the way their body uses estrogen, or am I looking at this wrong? Thank you again to all of you!!!!
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SugarMaple - I have NEVER before Tamox had low WBCs (even with my autoimmune issues on baord) and the last 2 labs they were low. Only new thing is Tamoxifen. Both my Primary and my MO are not overly concerned about this as they did tell me that drops in WBCs can definitely be attributed to various medication responses, not necessarily Tamoxifen.
There are a few studies, ones I posted in my Any early 40s declinging Tamoxifen? post, that show that Tamoxifen definitely does have a direct effect on our immune systems. Maybe give some of those a read?
For me, since my team can't attribute it to anything else and my scans/CTCs keep coming back clear/in range, that I'll just "keep an eye" on the variations in my labs and keep speaking up to my team if they continue. I hope your low WBCs fall into the same category and do not mean anything new is brewing. Keep us posted.
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RlJes --> You asked about my other chronic illnesses. The list is pretty extensive. I have Raynauds Syndrome, Allodynia, Chronic Fatigue Syndrome, Fibromyalgia, Sero-Negative Rheumatoid Arthritisis, Chronic Inflammatory Response Syndrome (CIRS), Chronic Late Stage Neurological Lyme Disease, Hyperhomocysteinemia, and Hashimoto's Thyroiditis. That is just the immune side. I have about 8 others that run alongside with them all, not to mention Depression, PTSD, and Anxiety.
I'm glad the Gaba helps you. That gives me hope. Like you though, I had levels of bone/joint pain prior to Tamoxifen, but at least then I could cope/manage despite it. It just feels like I'm walking around on broken bones at this point. I'm eager for the Gaba to work its magic, if it's able. Wishing you the best of the low SE world as you start back up on the Tamox. Keep us posted. My fingers are crossed for you it goes better this round.
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Just for giggles and who knows, maybe it will help someone else - this is my binder that travels with me anywhere I go. It has all my CURRENT medical care team info, treatments, symptoms, appts, scan results, imaging, labs, etc in it. This is just for the past 6 months of my medical care. If I carried a binder for the years of my life, it'd be a book mobile. 26 pages of it are soley the breakdown of my medical history - diagnoses, years, treatments, surgeries, current medication, etc. I'd be lost without all of this at every single one of my appts.
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Dani -- > I really hope you'll have better luck with a 2nd Opinion. It was so helpful for me. Please keep us posted. Wishing you luck with the Effexor and in finding someone who can support you and help you make Survivorship as less stressful as humanly possible. Thank you for your super kind words by the way. I teared up a bit reading them I must confess. Hugs.
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Sending hugs and healing to all. Thanks again for being here. You all have come to mean so very much to me and I'm cheering you on in your treatments and battles from my little world here in MN.
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I agree that this crew/post has been so important and helpful for me. I am reading and thinking of all you, and hoping we all find our way through.
Hugs to all. Spoonie - so much admiration for your courage in trying the hormonal therapy despite all the obstacles). Rjles - feel you on the fatigue, whoo boy!
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Hello Everyone,
It's good to see posts from so many familiar names. I love the way everyone jumps in to help and offer support. I have nothing to add in the way of suggestions and no experience with Effexor or Gabapentin or unsupportive doctors. I do emphasize with the annoying and debilitating fatigue. At first I thought my tiredness was due to surgery, then the frozen shoulder, then letrozole, then low WBC, then low vitamin D and now my recent trip to CA. My husband is telling me I should have a sleep study as he in convinced I have sleep apnea. I don't want to have one more thing!
Spoonie, I am so sorry for everything you are going through and hope that something will help soon. I use a binder too! I find it is so helpful. I have a tab for each doctor and I keep notes from appointments in it, along with related articles that I find. The doctors notes are all in my hospital portal and too numerous to print for my binder, but I know where I can find them.
Dani, I think it's so crummy that your doctor listened to all your concerns and then said he would see you in a year. What? That's it?? Have you had the "survivorship" appointment yet? Maybe there would be a more supportive caregiver to not only listen, but help and follow-up to make sure you are okay. I haven't had my survivorship appointment yet, so I am not sure what will happen with that.
I have my first post-cancer mammogram coming up in a couple of weeks. I read an article in the local newspaper about new FDA guidelines that said physicians would be required to provide women with dense breasts more info about the increased risk of BC. I have always been told that I had dense breasts, but no one ever said that my risk was increased due to that. The article also said that dense breast tissue can mean less precise mammograms, which makes sense. The NH doc in the article said that women with dense breasts may need more screenings or choose an MRI or ultrasound. I think I will send the link to my BS, who I meet with after the mammo, and ask him if I could sometime also have an ultrasound (have had this before when I had callbacks after routine mammograms) or MRI (never had one of those) just to see what he says.
https://www.unionleader.com/news/health/fda-takes-...
Sending healing and peaceful wishes to all.
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Hi Everybody -
Spoonie, I'm sorry about your immune system - I hear you. They try to treat one disease, but it hurts another disease. Its a battle. I was diagnosed with PSTD when I almost died with Sepsis - I had a 'No 911 policy" but found out I really didn't want to die. I had fallen and was trapped upside down in the corner of my bedroom. Its all a battle. there is a thread of BC and auto-immune diseases but its not active anymore. It was quite useful.
I have an psychiatrist appt this week and since Ritalin isn't working, I'll ask for Adderall.
Badluck - im going to go find your post -
Hope everyone can enjoy this holiday weekend. Take care.
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I know this is a little off our main topic here, so I'm hoping you'll indulge me. I have a mammogram scheduled for Monday. It's my first post-surgery mammo, and I'm feeling nervous. I was diagnosed last year at my annual mammogram. My head knows that I have a low risk of recurrence, but my stomach is full of butterflies. I'm also worried that it'll be more painful on the lumpectomy side due to the scar tissue. I'm getting a 3D mammo, and a diagnostic one on that side so there will be extra squishing. Has anyone here had a post surgery mammo yet? On the plus side, I will see my surgeon afterwards, so I’ll know right away ifsomething shows up.
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GreenHarbor I had 15 years of mammograms after my 2003 lumpectomy. I had no more pain and discomfort on the lumpectomy side than the usual discomfort. Sending you warm wishes.
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I was worried about the same thing GreenHarbor, but when I went in for my first one (3D as well) a few weeks back, just like HikingLady stated, it really wasn't much different than my previous ones since my dx. Good luck on your scans - fingers crossed all is clear!
ETA -> My Lump/SNLB was in Aug, first scan was 6 mos after RADs finished end of Oct, so scan was beginning of May. So I was 9 mos out, not sure if those that go in sooner if no RADs might have a different exp.
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Hey Greenharbor,
My first one is far enough away that I haven't really thought about it yet, but I'm thinking that popping some Advil and an Ativan beforehand could be a good strategy.
This illness is such a head game. Good luck!
Meanwhile, I just called ExpressScripts to start my 4th 'flavor' of tamoxifen. The third, Actavis, seemed promising at first. But the fatigue just took longer to catch up and it also made me depressed/terrible mood. Hopefully the doc calls in my refill soon. I'm really not sure how long I'll make it on tamoxifen.
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Salamandra, Getting ready for initial meeting with MO, super nervous. Can you tell me which flavors of tamoxifen you have tried? They also mentioned I might have to take Arimidex, so if anyone can help me out I would appreciate it.
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Carpediem56, you would not take Tamoxifen and Arimidex at the same time. If you are pre-menopausal the usual first choice is Tam, if post-menopausal then it usually is an Aromatase Inhibitor, including Arimidex.Not sure what you mean by colors of Tamoxifen.
Best wishes for your first meeting with the MO!
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Salamandra, what do you mean by flavors of Tamoxifen. Never heard of that.
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I meant different generic brands, sorry for being unclear.
I've tried Mayne (Teva manufacture, I believe), Mylan, and Actavis. I'm trying Zytus next. But from reading this board, it seems that while for plenty of women the brand can impact the side effects, there isn't really consistency on which brands have fewer side effects. I think it's kind of like birth control pills, where you just have to try them and see which one(s) work for you.
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Yes, Arimidex is a whole different drug family. It's one of the AIs - aromatase inhibitors. There you actually have a choice of drugs.
Tamoxifen is a SERM drug - selective estrogen reuptake something - and it's the only one officially approved for women before menopause. So you can't really switch drugs, but you can switch brands. There is no name brand any more, just a variety of generics produced by different manufacturers with slightly different formulations of inactive ingredients, if I understand correctly.
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Oh, so I guess they mean T or AL for me. Which would you choose? Only SEs I want are weight loss, good night's sleep and energy.
Thanks in advance!
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Chiming in with what my MO has told me about these two classes of drugs...
Tamoxifen: Used before menopause. Reduces estrogen production in the ovaries, which produce most of the estrogen in our bodies before menopause
Aromatase Inhibitors: Used after menopause. AI's reduce estrogen at the cell level, since our ovaries no longer produce estrogen, but our cells do after menopause. There are several generics besides Arimidex, the brand name one.
To decide which anti-hormonal med if you're going through menopause: There's often testing done for estrogen levels as women with ER+ breast cancer move through menopause, to be sure that they're being given the appropriate anti-hormonal.
Can Tamoxifen be prescribed for post-menopausal women? After menopause, Tamoxifen is the 2nd choice, after AI's, for women who can't tolerate an AI. My recurrence risk is 50% lower if I take an AI than if I don't take one at all. If, for some reason, I can't tolerate my AI and have to switch to Tamoxifen, it's still protective, but now my recurrence risk is 40% lower, so not as great, but still pretty helpful. First choice for post-menopause women is AI for this reason, is what my MO explained to me.
RE: side effects/brands for Tamoxifen: I tolerated a generic for 5 years just fine. Certainly I had annoying menopause symptoms (hot flashes, vaginal dryness) as expected (FUN!!!! Not.), but no horrible pains or other discomforts
RE: side effects/brands for AI's: My MO says that his experience in his practice, and also oncological research agree with your observation from this forum: It's quite random which brand of AI is tolerated well or badly by different women. Yes, it's often due to fillers and what is added to the active ingredient in various brands and their compounding. However, our bodies also adjust (better and worse) as far as how we tolerate AI's---this is also very individual, and some people suddenly get a new side effect or lose one that had previously been bothersome. Some of this is just our bodies' reaction to less estrogen, and some is due to different "fillers" in the various brands' compounds. Hard to know which of those two possibilities is the reason, says my MO. Sometimes a woman can reduce bothersome side effects by switching brands, and also just by waiting awhile, and also by taking a little 1-2 week "vacation" from the AI and then our bodies sometimes "re-set." If no AI can be tolerated due to horrible side effects, then my MO will have a patient try Tamoxifen. All of this is what my MO and his PA and his triage nurses have told me in various trainings and appointments and phone calls, and I'M NOT A DOCTOR, but I've been taking copious notes about all this now for quite a few months, so hopefully I have most of it straight.....
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If you're post-menopause and you have osteopenia or osteoporosis, mention that to your MO. I've got osteopenia and I fractured my pelvis a year ago from overtraining. Since the aromatase inhibitors can contribute to bone loss leading to fractures, I'm not a candidate for them.
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Ah yes....the bone loss thing.... Post-menopause women taking an AI have to consider this issue, for sure.
I was diagnosed with osteopenia before starting my AI. My AI is hugely important for reducing my recurrence risk, so I now have a bone med added into my life. It's Zometa (a bisphosphonate), given as an infusion every 6 months.
It helps protect against bone loss from the AI. We'll keep checking bone density with DEXAScans every 1-2 years, says my MO. Zometa also has an additional benefit for breast cancer patients: it protects against bone metastases, by making the 'matrix' of the bone really solid. A down side of this is that it takes longer to HEAL a fracture. But, I'm also less likely to get one, of course, because of stronger bones. In December, I had hardware removal (a screw) from my foot (from February 2018 midfoot fusion surgery) and the little hole in the foot bone took a lot longer to heal than it would have before I got on Zometa.
On Zometa Day, I have blood drawn, and my MO checks my kidney enzymes. Then, the infusion, which takes less than an hour. The next day, I'm super tired and need a huge nap and can't do much, but I don't feel sick, and by the day after that, I'm totally normal. My #2 Zometa was two days ago.
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Hi edj3- i hear ya sista! I almost
did femara until mo said i’d
have a fast slide in to osteoporosis!
...but,,oh!... i could take alendronate
to “ protect the bones”- but, wait-
the side effects from both hugely
outweighed the teeny benefit of femara...
bone loss, oesophagul cancer risk
yadyada.. so i bailed on that one-
bought the tamoxifin 3 weeks ago
and its still sitting in my drawer-
Uterine cancer and blood clot risk
were my choice over osteoporosis
and esophagul cancer risk-
some women have to take these drugs
given their own pathology and i
admire each and everyone one of them
for their strength and courage-
but fir those who have a low recurrence rate-
it really becomes a “ would you rather”
situation-
I will throw the book at this
beast if i am faced with another episode-
but right now? it seems that the se
just outweigh the small benefit provided-
is anybody else out there in my boat?
will destroy0 -
I don't think I can do it you guys. I don't think I can tough it out anymore and wait to see if Gaba can help with the extreme pain and crushing fatigue. It's been 2 months of this and I don't think I have it in me to battle it out one more month. I don't feel like I'm alive or functioning at all. It's just all encompassing and has bottomed me completely out. I'm just in all ways possible, not me, and if I can't feel like me and be alive while doing so, then what is the point of taking the damn drug?
At this point I'd rather take my chances of METs (35%) and just enjoy my life NOW as much as I can at 41 years (spoonie life was rough but at least i could function and enjoy most days), rather than struggle to stay alive through my prime on meds, in the hopes the meds work. I know I would severely regret suffering and missing out on so much over this future time period if METS or a recurrence does happen.
It's now the opposite of how I mentally started -- I wanted to try everything I could so I wouldn't regret trying treatments if the worst happened. Now I want to live NOW just in case it comes back years later.
Does that make sense to anyone?
I'm just so over feeling like a zombie who's decomposed to the point of no longer being mobile....*nerd reference to Walking Dead famous Season 1 walker scene*. At least I can still find humor at times.
Thanks for listening yall. I appreciate it, as always.
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