Starting/declining hormone therapy Nov, Dec, Jan 2018
Comments
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Oh yeah, besides the pain when I first get up (in screaming slow motion), I've started turning into the Incredible Hulk rage-wise. My mom was on a long-term course of steroids for a lung infection when I was a kid, and there were a couple of years where we basically hid from her to avoid the screaming. I do not want to be that version of my mother (who was a fun, smart woman except for that time period). IF it's the Tamoxifen causing the pain and anger (and the anger may just be from the pain and the frustration from it), if I restart it at some point, it will be a lower dose.
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Hey Dani,
I was having really bad insomnia and fatigue on tamoxifen too. I thought that the insomnia might be related to the heartburn I was feeling during the day. I switched the tamoxifen from night to morning, I went on really high doses of Prilosec, and in the mean time got a trazodone prescription to knock me out 'over' the heartburn. It took ages for the Prilosec to work, over 4 months. But now I'm off it, the heartburn did not come back, and I don't need the trazodone any more.
For the fatigue, I'm trying different brands of tamoxifen. I'm on my third brand now and it's definitely better than the first two. The tiredness hits later in the day and it's not as intense.
My psych thought it was interesting that when I went down from 20mg tamoxifen to 10mg (even on the prior brand), my fatigue got much better right away. He said that made him think that the fatigue is less of a hormonal side effect for me (because that would take a while to adjust) and more either a response to the molecule itself or possibly to the exact mix of drugs/inactive ingredients in the pills. That made me feel optimistic that I could actually stay on the tamoxifen long term as long as I find a brand that isn't as bad.
So I don't know. On the one hand, I feel a lot better now than I did about a month ago, when I felt really debilitated and had to come home every day and crash and basically had no evenings. But I still don't feel as good as before I started treatment. I'm going to keep trying with this brand and see how it goes for a month or so, I think.
Switching brands is pretty easy and it's worth a try, I think. From reading these boards, the impression I got is that the brands that work well for different women are different and it basically requires trial and error, but for what it's worth, the two brands that were terrible for my fatigue were Mayne (I think they make several formulation though, and I only tried one) and Mylan, and the one that so far (only been a week) seems better is Actavis.
It was so bad. I felt like I wouldn't be able to work. I couldn't believe anyone would consider tamoxifen 'not active' treatment. I was definitely not prepared for how impactful it can be! But I think it's gotten somewhat better for me and I hope it can for you too.
(My plan is to keep trying different generics (there are very many) and do my best to stick to it for about a year, which seems like a fair amount of time for my body to adapt. If that didn't work, I would switch down to a lower dose with or without my MO's blessing).
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Oh Spoonie - I know just how you feel about the pain in the legs, back, knees and feet. I went to the store (a rare occasion) to get special doggie treats) and I was hunched over, doing my usual shuffling along, and a sales clerk asked me if I need medical help. Good Grief! I was so embarrassed. I cannot imagine the stress you are under with the threat of mets invading.
Pebbles, I'm so glad your doing ok on Tamoxifen. Gives me hope. Maybe the 2nd time around that I start won't be so bad.
AliceB - hope you can find some type of relief. Heck, I hope we all can find some type of relief. In this day and age, you think they would come up with something different.
Thinking of you guys - Jen, hapa, Dani and GreanH- Take care.
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Thanks everyone for the continued thoughts.
Got the results of CAT Scan via my dr portal. Looks like nothing was abnormal, so I guess in a way I'm very relieved cuz no METs or lesions!!!! On the other hand I still have this incredible unexplained pain in my lower ribs, still have low WBCx, still have Liver/Kidney tests that are off & out of range, so I'm left with no answer for what's going on.
Kinda depressed.
I'm on pain pills from my Primary for the pain in my ribs (now been going on for more than 2 months) and I think of going to the ER about 5 or 6 times a week for it. It's awful and I want it gone.
Like I said, feel bittersweet about the results. Glad no cancer no METs no leisons no nothing but I wish there was "something" that could fix what is definitely wrong. Hopefully when I speak with my PCP on Monday she will have something else to test or try to resolve these issues.
Thanks again everyone for the support during this stressful time. So glad you are all "here" with me and we can get each other through the rough patches.
Salamandra -- Thanks for sharing that info about the fatigue and it being tied for you to different Tamoxifen brands. I will run this by my MO next appt and see what she thinks. Curious, does this affect your bone pain or other symptoms or have you just noticed fatigue only with the switch? Also, can I just ask my Pharm to change it for me or how is that handled for you?
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Hi Spoonie77,
Glad to hear that nothing was abnormal on the CTscan. But understand the concern..then what is causing all the rib pain? You must have had an xray by now? No fractures? When I get blood tests results that aren't in range, I ask to repeat the test. Some doctors will and some won't but it's worth asking because maybe there was an error at the lab.
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Hi Spoonie... Thanks for checking in; I’ve been thinking about you. While I’m relieved for you that your rib pain isn’t mets, I can understand wanting answers. Veeder’s idea of repeating the blood work can’t hurt either. Hopefully your PCP will have a “what’s next” for you.
Salamandra, glad to hear your heartburn has resolved!
Rjles, I love your flowers!
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Hi ladies, I too have some fatigue. I had my 3 month follow up with the oncologist on Wednesday and I spoke to him about the fatigue, the answer I got was 'yes that's a side effect of tamoxifen'... helpful (not)! Anyway, he mentioned that a multi vitamin may help - which I will go and buy on the weekend, I'm happy to try anything if there is a chance that it will help.
Salamandra - sorry for this silly question but how did you find out what brand of tamoxifen you were on. I asked my pharmacist when I picked up my refill on Wednesday and was told 'it's a genetic brand'.... Anyway, having just come from my oncologist appointment I wasn't in the mood to question him any further and I walked out!
Sending a gentle hug and positive thoughts to you all.
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Spoonie, it took 3 X Rays for my doctors to see that 4 of them had hairline fractures. After the second one I cried when they said they were clear. Keep demanding tests.
Hope you feel better soon
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TC73, the manufacturer’s name will be on the prescription label the pharmacy puts on. I use CVS, and it’s under my doctor’s name. It’s in tiny print, but it’s there! And there are no silly questions here. :-)
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Hey Spoonie and TC73,
I didn't really have bone pain from the tamoxifen, my big side effects were fatigue and heartburn. But from the other threads on this forum, it does seem like changing brands did help some women with bone pain.
To change brands, I had to talk to my pharmacy (express scripts, I have no choice). I had to tell them what my side effects were that caused me to want to switch. They made a note and sent me a different a brand. It didn't require a new Rx from the doctor, but every time they sent me a new one they counted it as a new 'refill' so I'll need a new Rx sooner than I otherwise would. The pharmacists asked for my input on which brand to try next, which I really had no idea what to tell them and I think they ended up choosing more or less at random.
The brand is written on the bottle. Some brands make more than one formulation. This is a page someone shared somewhere else to find the exact formulation by the brand. It's not so user friendly but useful. There are a ton of formulations. The next one I have in mind to try (if necessary, so far cautiously optimistic that it won't be) is the old Teva formulation, which is now one of the many formulations manufactured by Mayne. I think that could be complicated to talk the pharmacist through since so far they've defaulted to completely switching manufacturers. I think that's just because it's easier for them tough.
I read about it here by searching the forums either for 'brand' or the most common manufacturers names, like "Actavis" "Watson" "Mayne" "Mylan". There are a lot of really useful prior discussions.
This is a research article that is relevant, albeit a pretty small study: The impact of tamoxifen brand switch on side effects and patient compliance in hormone receptor positive breast cancer patients
Spoonie, I'm so glad you don't have mets! I hope you can get some answers and pain relief soon!
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Spoonie...not sure if I posted this already but there is something called costochondritis. its an inflammation of the costal cartilage that connects each rib to the sternum at the costosternal joint. Its fairly common in breast cancer survivors. I had it and it was awful! Thank goodness it's gone. It lasted about 3 months and it was debilitating. Please let me know if you have any questions. PS Most docs can't diagnose it!
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dtad - great info re: Costochondritis - but my rib pain is under my armpit.. but good info to have for future ref!
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Hi ladies,
Since I seem to be doing alright on tamoxifen and after reading SALAMANDRA'S post, I decided to check what brand I'm on. The bottle says, “Generic for: Nolvadex" Mf. Mayne Pharma IN. It's in a 10mg dose so I just take one at 8pm.
And someone mentioned multi vitamins. I HAVE been keeping up with my vitamins, I take a multi vitamin and vitamin C and vitamin D and fish oil (in gummy form so it's like a treat and not swallowing a bunch of pills).
Anyways since I have no joint pain or anything too noticeable except a less regular cycle, I hope that helps! RJLES maybe when you go back on it you can ask about this brand? Oh and I agree gorgeous flowers!
SPOONIE - I think the results of your scan is good news! Better to have no mets. And I'm SOoooo glad you finally found a supportive MO! I remember your story of the awful MO before and as you know from my experience, having an MO who cares about and adapts to your specific case is key. Re: rib pain - out there thought but could it be attributed to a slipped disc? A nerve in the back sometimes impacts other things, which I know as I had left leg pain that was actually nothing to do with my leg and the result of a slipped disc years ago.
From Domino and Tucker - whether you feel like this this weekend:
Or like this:
It's all OK to feel and we'll get through it together.
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Spoonie, sorry you didn’t get answers from your scan. I totally understand you feeling bittersweet about the results. I hope your PCP has a helpful next step for you, and can maybe repeat your labs. Sending gentle air hugs as to not worsen your pain 😁!
TC73- Sorry you are dealing with fatigue too, it really does suck. Interesting about the multi vitamin! I am taking D3,C,magnesium and biotin. Maybe I should look at giving a multi vitamin a try!!
Salamandra- I will call and ask the pharmacy about a different brand. I just got it refilled though so I probably have to wait right? I just looked at my bottle. The pharmacy label says MFR Watson labs, but the bottle says actavis. I am calling my MO office Monday to get into him sooner than July. I saw my PS for a follow up yesterday and she gave me an RX for trazadone to try. I really didn’t sleep well last night on it. Actually I woke a couple times in a panic, not fun. I am sorry for being so negative but I think having that US triggered some anxiety and I can’t seem to reel it in.
I don’t really feel like I can share that with anyone else but here. I still continue to hear “how brave” I am. If they only knew.....anyway I need to find my way back to my self because I don’t even recognize me anymore. I will stop my pity party now😁. I feel a bit better just getting it off my chest.
And I am definitely relating to Domino’s pose
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Hello Everyone,
I am feeling more like Domino this weekend too. I am so tired. If I could just get some sleep I could handle everything a little better. I just now got my mom's annual "redetermination" letter for Medicaid and it says she was denied! She has been on Medicaid for a number of years, she is 91, in a nursing home with Alzheimer's and was just admitted to Hospice care. I completed all the paperwork, jumped through all the appropriate hoops, wrote emails with questions that were never answered and now this. I just emailed DHHS to tell them I thought I complied, I want to comply and to please help me. I also told them I am leaving on Thursday to fly to CA to visit grandkids. I was tempted to add that I haven't been to CA for almost a year since I've been undergoing treatment for CANCER...but I didn't. Geesh! The letter says that I didn't give them all the info they need, but they didn't tell me what I was missing. They said she was over the income level of $2,500 and she is not. It is so frustrating!
I think the only noticeable SE I am having with letrozole is fatigue. When i saw my MO after starting the Rx she said it might be due to my low vitamin D level so I am taking 6 weeks of 50,000 units once a week. I don't think it has lessened my fatigue. Maybe a multi-vitamin as TC73's doc and others suggested...
Alice, my husband is on long term prednizone and I know about the anger issues. It must have been scary for you as a kid to see your mom under the influence of it. I hope you feel better.
Salamandra, finally you got rid of the heartburn. Cheers to that!
Spoonie, I am feeling relief that no cancer was discovered but how frustrating to feel so terrible that you consider going to the ER. I wonder what would happen if you did? Would a doc with a different specialty find something? Take Care.
Here's hoping everyone will feel a little better tomorrow, with fewer scary side effects and less pain and worry.
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LPlibraryg --- I'm retired from the nursing home medicaid eligibility office --- you need to request a hearing right away in order not to lose possible coverage. Failure to provide information is a common reason for denial. You can call the worker to find out what she needs -- If your moms income exceeds the limit then ask the worker about a trust to have her income directly deposited to -- after the trust is created the excess income is disregarded. When they say her income exceeds the limit remember they are talking about gross income - not net. The increase in her social security benefit may have put her over the limit this year. PM me if you have any questions. Also, the nursing home bookkeeper probably deals a lot with medicaid and can probably help you. Good luck!
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Thanks ladies for the info, on closer examination the label on my first lot of pills has Tamoxifen Nolvadex and the new pills are labeled Tamoxifen Citrate.... But all are stamped with the '93 782'. When I check the number against the link from Salamandra (thanks for sharing it) - it looks like I'm taking tamoxifen made by teva pharmaceuticals. Haha - totally confusing but happy that I now know.
I brought some 'gummy' multi vitamins today - hoping that they will help with the fatigue, not expecting miracles but happy to give them a go.
Danni444 - don't be sorry for being negative, we all need to get stuff off our chest and this forum is a great way to do that. So if it helps you to process and deal with things I say 'share away'.
I'm super grateful that everyone on here is happy to share their experiences, help, and listen - in my eyes you are all super stars
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TC73 - the gummy multivitamins are pretty yum! I take NatureMade. I think that’s why I continued with vitamin D after radiation, I figured it doesn’t hurt and it’s pretty good.
Dani and LPlibrarygirl - Domino empathizes with how you feel.
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Checking back in after a bit of a break. I'm making a conscious effort not to think about breast cancer all the time, so have blocked this site from my phone and limited myself to just an hour a day on my computer.
Pebbles, thanks for always being so positive and posting those darling photos of the pups! They always make me smile!
LPLibrarygirl, TC733, Salamandra, and other tired people, I can relate to the fatigue. It's been hitting me hard lately. I get through my daily activities OK but then completely run out of steam in the evening. Yesterday I caught myself hurrying through my chores and errands because I didn't know how much time I would have before it hit again. I don't know if it's the tamoxifen per se, or the nighttime hot flashes disrupting my sleep and making me tired during the day.
Spoonie, I'm glad your tests turned out clear, although it's frustrating not to have answers. I hope they can find you some soon.
Dani, I'm sending you all the most positive thoughts I have regarding your upcoming scan! How anxiety-provoking. I can relate to the "you're so brave" line a bit. A couple days ago a coworker from another branch saw me for the first time, gave me a hug, and told me I'm an inspiration. I was like, huh? Thanks, I guess. I just did what I had to do, not like I had a choice.
I dropped my magnesium a couple of weeks ago because I had a couple days of feeling just terrible and noticed a couple of my symptoms on the "magnesium overdose" list. Realistically, it seems unlikely that I was actually at an overdose level, but I did feel a lot better within a couple of days, so who knows? Now I'm getting leg cramps and pains again. Woke up this morning feeling about eighty years old, or as if I'd run a marathon the previous day or was coming down with the flu. Everything hurt, the way SPoonie and others have described. So I'm trying the magnesium again, but at half the dosage. Today at a family gathering someone asked how I'm feeling, if I'm back to normal. I said I was doing well. What else was I going to say?
I also realized that it's sort of reassuring to have tamoxifen as a scapegoat for everything that feels off. Hip pain? Maybe mets, but probably the tamoxifen. Leg cramps? Could be a blood clot, but more likely the tamoxifen. Why did my coworker's comment hit me so hard? Is she really that mean? Probably not; I'm being oversensitive because of the stupid tamoxifen. I'm not looking forward to another 56 months of continually feeling unwell, but so far, nothing I've experienced is worse than more cancer would be, so I carry on ...
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have been on a AI break and feel so much better. Will see my MO soon to decide what to do. The AIs caused a 10% loss in my spine in only six months! so I now have osteoporosis so for-me the 2% improvement in life expectancy doesn’t seem worth the trade off. I too have not been on the site and have felt almost like my old self. Good wishes to all!
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Hi Everyone -
LPlibraryGirl, I am so sorry to hear about your mom. I am about in the same situation with my Mom - took about 8 months and hiring a Elder attorney to get my Mom on Medicaid, (I tried to do it myself and she was denied) and its still not quite right. The Administrator with the Memory Care Unit is helping me trying to get the $$$ straightened out. (she is quite helpful) What a mess tho - due to Medicaid screw ups. With the chemo brain - its not easy to follow.
And being So Frickin' Exhausted. I am planning on getting all my Major TO DO things done this month, then go back on Tamoxifen. (5mg) Like I said, Tamoxifen is like taking a bottle of Nyquil. If the next 5 years are going to be like this - then I need to rethink taking this Rx.
And Please - nobody needs to think they are complaining too much! This is a safe place. No Judgements.
And I will take note of the manufacture of Tamoxifen and change - see if it makes a difference. Good Idea.
I wonder if I sleep with my tongue sticking out
smile. 0 -
Hey bennybear- interesting news-
How long were you on AI- i bailed
on the femara due to bone loss fears
and will now take tamoxifen.
I totally get you quandary: I , too, have
a low ( 1%) reduction in mets
with the anti estrogen drugs.
our path is uncannily similar. I am
very intetested to hear what your MO
says- my feeling in ourcase is they
cant come flat out and say
that the HT will reduce risk by such
a small margin- that dont need to take
it- in other wirds, decisions will always
be “ our own” ...but regardless, we
hear this low % but not what would
be recommended... to take or not-
was that what you experienced0 -
Purplecat - so glad the pups make you smile and you're welcome! And good point re: tamoxifen, sometimes it can be a scapegoat for everything else and that's not so bad.
Bennybear - glad you are getting yourself back. That's always been my goal to see through this treatment while holding on to my sense of self as much as possible.
Rljes - keep us posted, hopefully the brand I'm on for tamoxifen will be better for you. Hoping!
Cassiecanada - there are a group of us that started in a lower dose of tamoxifen and gradually worked our way up and seems to have helped lessen the side effects.
To all the ladies - I'm off to Italy this week and next for a much overdue vacation (have not taken a proper trip since this whole ordeal started). Can't wait! I plan to keep taking tamoxifen as I'm pretty OK on barely any side effects so as long as my body is used to it, I don't want to get UNused to it if that makes sense. The only annoyance is that tamoxifen is really messing with my cycle but the doc reassured me it would stabilize in 6-9 months and was more an inconvenience but nothing to worry about.
I plan to take a break from posting until after I'm back so here's a pic from Domino and Tucker to tide you over!
And if you want you're puppy fix while I'm away, they DO have an Instagram page fully dedicated to paw cuteness here: https://www.instagram.com/pebbles_paw_family/
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Pebbles, have a wonderful, well deserved vacation!
rljes, my mom was assigned a new caseworker. Yay! She has already contacted me and I feel so much better. The Medicaid process is very stressful. Good luck to you too! What a great analogy about your fatigue making you feel like you took a bottle of Nyquil. I agree!
Purplecat, thanks for checking in.
Cassiecanada and benny bear, I am taking Femara and when I had a bone density test after about two weeks on the drug it showed osteoporosis and osteopenia. I will have a Zometa infusion in June to help with bone loss. I find it kind of concerning that I was told I don't need to have another bone density test for two years. I would think they would want to monitor it more closely. Anyway, for now I am sticking with the AI because I declined chemo and just feel that this will give me the best protection.
Dani and Spoonie, any updates? Thinking of you.
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Hi LPLlibrarygirl,
Most insurances only pay for bone density tests every 2 years. That may be why your doctor told you that. Bone grows slowly so after two years on a bone strengthening medication, bone density is tested.
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Thanks Veeder! I never thought about it coming down to insurance, but that makes sense.
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Pebbles have an awesome vacation! Looking forward to pics when you get back. :-) (By the time you return I'll be finished with Herceptin. Hooray!!!)
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TC73- I know its only been a few days but any luck with the multivitamins?
LPLlibrarygirl- Thank you for asking
I am so sorry about your mom, and that you are dealing with frustrating insurance processes. I cannot even imagine. I hope things are getting a little better with all the paperwork since you have been assigned a new caseworker. Have a great trip out to see your grandkids!benneybear- So glad you are feeling better on your break from the meds. Wow, that is really scary about how quickly the bone loss happened. I am with you on exactly what the trade off is here with these meds. I hope you and your MO can have a good discussion about what is best, I too am interested in what he says. I am planning to have a similar conversation with my MO soon.
Pebbles- So excited for you and your upcoming trip. Have a wonderful time!
rljes- YES, it is like taking a bottle of NyQuil
And I think I would still be wide awake after a few hours even if I did take a bottle of NyQuil with this damn tamoxifen. I was able to get an appointment with my MO sooner so I am anxious to find out what he has to say. My ultrasound for the lump I felt was a BIRADS 3 "probably benign" The report stated "Tiny 2 mm hypoechoic focus between the skin and the implant at the area of palpable concern identified by the patient. Given the location of this finding between the skin and the implant without any visible breast tissue between the two, ultrasound-guided biopsy is not possible. Recommend correlation with physical examination and clinical followup." They are going to rescan in August and the BS will be the one to do a biopsy if she thinks it is necessary.
Sending good thoughts to everyone!!!!!
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Hi dani444 - I've only been taking the multi vitamins for 5 days so yes it's a little early to tell, but I'm staying hopefull. Oh and because they are gummies - I feel like I'm having a little treat by eating them, so even if I don't think they are helping with the fatigue I'll keep taking them. Great news that you were able to get an earlier MO appointment, I have my fingers crossed that you get reassuringnews.
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Pebbles have a fantastic time! Love love Italy!
Appreciate all the supportive comments. I was on Anastrozole for three months then three months of Exemestane, started fosamax four months in after breaking my elbow. I was shocked as was my PCP by a ten percent bone loss in my spine in this short of time while on bone drugs. I will let you know what is said.
My MO told me I can come off but I need to have no regrets. The resident MO gave me the print out that shows only two percent increase in survival. Trying to balance this with possible continued bone loss. I have been told tamoxifen is not an option for me due to the possible uterine cancer risks and a previous scare I had.
My density tests were covered due to being on the AIs and Fosamax. Glad I didn’t have to wait to find this out.
I wanted to have the protection of the AIs and could deal with the hot flashes, but the joint pain has improved immensely. I was walking over 18000 steps a day! For me the osteoporosis and bone loss may be the deal breaker.
Hugs to all on this difficult journey! Hope we all do what is best for each of us with no regrets and few side effects!
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