Starting/declining hormone therapy Nov, Dec, Jan 2018
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HPFULL, thanks for the picture of that creature! That is me! Or was me this week. Feeling a little calmer....
So Librarygirl and anyone that might be fortunate enough to escape the polar vortex, Logan in Boston was just fine this morning. A little delayed but nothing crazy. And security lines were really short, which is good because my husband who is joining me on my work trip does not have pre-check.
And the Zometa infusion was fine, though it was not fun to be back on an IV so soon. Today is 3 months PFC for me. But all my worry was for not. My MO - who is fantastic - told me they do the infusion over 15 min and increase the time and fluids next time if I have side effects. So I went down there ready to plead my case for the latter. The nurses said they always do the first infusion over a longer period with fluids the first several times and I always have a choice. Nurses rock. And they put in extra fluids pre-flight. I loaded up on claritin and nuum tablets (my new friend) and am good so far. They also said that the side effects are so similar to the AIs that I might really notice.
I also had my second lupron shot yesterday and didn't feel a thing! They spent a lot of time talking to me and said to keep going with my general offness and anxiety and fingers crossed my body will adjust. They were the right amount of listening and taking me seriously but hopeful I will feel better and that some of what I'm going through could be post-treatment related.
So it was positive and if they are going to be that lovely each visit, I might continue making the trek for the shots there for a while for a little free therapy.
I have a Vitamin D question. I got tested yesterday and I'm normal but at 34 in the low end. The NP said that's fine and I don't need to up supplements. I can't possibly eat more spinach and I don't want to eat more yogurt. I read online that optimal levels are higher. Has anyone been told to get it up higher or have you been told to just keep it in the range.
Sugarmaple - glad no clot!
Ingerp - I agree, it is a tough time of year....daylight will help.
Alice, - did you fire the bastard yet?
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Tiger I started taking 1000 IU of D3 after my MO suggested it (and I hadn't had my levels checked). She also suggested a calcium supplement but I'm trying to increase that through diet. I don't think a little extra D can hurt?
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Tigerlily - I started taking vitamin D while going through radiation therapy just because it didn't hurt to strengthen the body's ability to tan vs. burn. I'm continuing it for now, not for any other major reason other than it doesn't hurt, was also good for me on the IVF/fertility journey (higher levels better) and is in yummy gummy form LOL. So I agree with Ingerp that a little extra can't hurt.
HPFULL - I think it's completely natural that we are feeling the emotional ups and downs, and it might have more to do with what we're all going through vs. the hormone therapy itself. The fact is, we've all stayed really strong through treatment, and I think this is the first moment we're having a chance to breathe and everything we've held off while staying strong through surgery or chemo or radiation or some combination thereof has finally had a moment to just break through. It happened to me too, somewhere after radiation but before starting tamoxifen, I had some good emotional cries that seemed set off by some minor thing! We're going through a lot, everyone is so strong here and staying upbeat and positive and in survivor mode... every now and then the weight or reminder of it all catches up to us and I think that's OK.
Salamandra - thx! And I think you might be on to something! I exercise in the evenings now around 7pm and continue to konk out before midnight, usually by 10:30-11pm I'm pretty tired. I used to stay up until 2am... so entirely possible. It's true on days I do more exercise, like when I go swimming or biking in the summer, I sleep much better.
Purplecat - I'm a fan of the 'rats I forgot to take the stupid tamoxifen' song and dance. Art comes in many forms LOL.
Michelle_in_cornland - That study would be great! I hope they do it! I let my husband know how there's a group of us all starting slowly on these forums and we all seem to be tolerating it so much better. So maybe there is something to that and one day it will become the norm!
Alicebastab - I can't believe your PCP said to just get used to it re: joint pain. :-O No, we don't have to just get used to SEs, and we are real people who are entitled to try to keep up our quality of life while they hit us with all these treatments. It's why I'm trying to research ways to avoid SEs or how to manage them if/when they happen. Not sure if it helps, but found this on foods to help relieve joint pain: https://health.clevelandclinic.org/the-best-food-t... and this on non-diet related stuff to help with joint pain: https://www.gaiam.com/blogs/discover/10-ways-to-re...
LPlibrarygirl and others in the deep freeze - stay safe! stay warm! stay indoors if you can!
jaboo, dtad, sugarmaple, hapa, wised, spoonie, wigging, egregious, greenharbor, wanderweg, ingerp, innab and everyone else on this awesome thread - Happy almost weekend and wishing us continued smooth rides (as much as possible) on our journeys! So far so good re: my first 2 weeks on tamoxifen (still at 10mg).
My only update is that my amazing husband baked me this all-natural homemade loaf of bread with wheat flour and almond milk and no added butter or sugar or oils! And given that I hadn't eaten bread since the diagnosis (self-imposed diet plan, I lost 30 lbs since August!), I allowed myself some of this and it was DEEEE-licious. Tucker and Domino also got some bites, you can see how excited they are!
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Hi …Help Please :
I've been taking Anastrozole since Jan 20th. I've had slight stomach upset and spine pain. Tonight I have a SEVERE stomach ache. My spine feels like a knife is sticking in. Anybody else have these symptoms with Anastrozole? I've been taking it with dinner around 6pm. Maybe I should take it later on an empty stomach before I go to bed?
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Hey Pebbles! I loooooove your thoughtful words to HPFULL. I haven’t really thought about my emotions like that-but I think you really hit the nail on the head with it! I don’t recall crying pre or post surgery, really. I’m not much of a cryer, generally speaking. But the tamoxifen/SE’s, etc. definitely had some very unusually tearfilled days for me. But, like you said, it’s so much more than that. Things kind of slow down, or we just have more moments to ponder our ‘new state of being’. I’m still loving all the good tamoxifen, AI journeys I’m reading on here. Way to go
🌼
Stay warm out there!
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rjles, I’m sorry to hear about your stomach and pain issues. I haven’t had anything like that with anastrazole. I’m concerned that your symptoms have worsened; severe pain and nausea should be taken seriously. Please check in with your doctor in the morning. If you can’t get an appointment, I think you should consider urgent care or the ER. Please take care of yourself! Check back and update us tomorrow.
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rljes that sounds painful and scary and you should definitely tell you Dr!
Pebbles thank you for the kind words. Today was day 8 of 33 RADS and 3rd week of Tamoxifen and have been on gabapentine for nerve pain from botched recon. Hoping for some PT soon for relief. As of now February 20 is the first open appointment but I talk to the nurse navigator and hopefully she can find me something sooner. That bread that your husband made looks amazing 💕 must be in the air... I made bread (potatoe bread) too but not at all as healthy. I never made bread before my diagnosis and now I have made 3 different kinds. It’s my new obsession to take my mind off things.
Hope you all have a great Friday
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rljes--I've never heard of anything like that related to an anti-hormonal. Yes please check in with your doctor.
Pebbles--I'm mostly off bread these days but when I'm on vacation I have a big old piece (or two) of TOAST every morning. Nobody loves toast like I do. Your picture made me so hungry for it!! (I'd do that toasted with a ton of butter and a drizzle of honey. Yummmmm. . .)
I'm off to Herceptin this morning. Had a dream about them starting the IV. Five more after today.
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I am now on full dose of Aromasin. for 20 days, I was taking half a pill. Yesterday I saw my MO and she was completelly OK with that. I noticed more hot flushes, otherwise nothing much. But I guess my body had other things to care about, like the BMX.
I feel I might get emotional too, quite soon. So far, it's simmering under the surface. I am still in fight mode, I guess. I recently had my Birthday, and it got me thinking about my poor husband - there's a new creature living with him, it has faaar less female hormones in its body than he has, it has no nipples and smaller breasts than he has and it is of very little help with the household or the kids... and it has to be driven around to appointments. this creature would be me... all this before we are even 40.
rant over.
sorry
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I'm sorry JaBoo. My husband's only 34 and I feel so bad for him. He's holding up pretty well though. I tell myself that we are all slowly falling apart and if this hadn't disrupted our lives something else would be along soon to mess it up. Since I got cancer people are a lot more open with me about their own trials and tribulations and I've realized that everybody is dealing with something, and if they aren't then they're extremely lucky, but usually those people just make mountains out of mole hills anyway (I'm thinking of my sister here - soooo many first world problems, lol).
My husband is recovering slowly like I am. He went whitewater kayaking a couple weekends ago, and we've been going on hikes and runs together and playing river fetch with our dog, which is a nice change from him just being hunched over his computer playing video games like he's done for the last year.
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Hello all, am up to a daily half pill of arimidex. Upset stomach, monster headache especially in the back. I feel like I'm pregnant again
Am trying little crackers and tylenol and a cold pack on the back of my head, plus gentle exercise and extra rest. I'm ramping up to a whole pill at the end of next week. Gotta try.
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My husband’s 50, and he’s been my rock since the diagnosis. Last year he had to deal with: my melanoma diagnosis, my breast cancer diagnosis, his cousin’s untimely death, my mastectomy, my chemo, his aunt’s unexpected death, my radiation and now lymphedema in my right arm. He is my main caretaker, my love,and my friend, and I have nothing anymore to repay his kindness with. No use of my right arm for now, Saline balloons instead of breasts and Sahara desert instead of my vagina. If that won’t make him run away from me, nothing will.
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Well here's a shoutout to all of our loving caregivers. I know my husband has cried (although never in front of me) and has been eager to do what he can to help me. I know we could all *manage* without them but they sure have made the journey easier.
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My husband has been great. He said (only half kidding) when I was in the middle of treatment and surgery, etc, that his onlyjob was to say “yes, dear, whatever you want”. He took time off to go to my big doctors appointments and helped me decompress when my mind got stuck on the never ending hamster wheel of what if’s. He’s spent most of his career working with adults with developmental disabilities, so didn’t bat an eye at helping me get dressed the first couple of days after my lumpectomy.
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I have been on Tamoxifen for 8 days now. I have had very mild hot flashes. I can deal with that but oh man, my brain. I'm a CPA heading into tax season and I cannot focus and find myself making mistakes and I have trouble concentrating. I feel like I am high or something and very forgetful; like my reality has been slightly altered. I hate this! I agreed to take the pills another week while I am on vacation but there is no way I can put up losing the ability to use my brain. Other than that the only other side effect is fatigue but then I have not had much sleep since this whole ordeal started. This brain thing is definitely different, however, I have had trouble sleeping for years. I know something in my brain is not working right.
Best wishes to all,
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An amen to the support of partners. My husband has been amazing and we'd only been married not-quite two years when I was diagnosed. He keeps saying, "Honey, I'm ALL in."
The bread looks good. I've recently started baking bread again - I'd let my sourdough starter die while I was in treatment and just resurrected it after New Year's. Now I'm making whole wheat sourdough bread with flax meal and turmeric added in.
So I saw my MO today for my first post-chemo appointment. I was asking about the plan and whether we'd switch to an AI at some point. He said given my osteopenia and given that an AI would add only a very minimal advantage in my particular case, he had no plans to switch. He said I'd take tamoxifen for 10 years and then we'd discuss what's next. He was also elated to hear I was not having any particular problems. Unless something is weird in the labs they did today, I'll get my port out next week.
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SheWra - I had some brain fog when I started on AIs and it scared the crap out of me since I also make my living off analytical work. It got much better after a few weeks. Lack of sleep certainly doesn't help your brain function. It's not so good for your immune function either, which you need to help fight off any cancer cells that are trying to get a foothold in your body. Maybe look into taking some melatonin? Good luck!
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Sending warm wishes to all of you who are hurting, in any way, tonight.
Sometimes a friend will tell me I'm strong or brave. I always say thank you but I often want to say, "Really?! Because I have no choice." But we are brave and we are strong, just doing our best to keep going some days. I can only imagine how hard this is for those of you who are so young.
rljes, please check in, if you can. We are worried about you.
Pebbles, nice looking bread-and so healthy too. What a nice surprise for you, Tucker and Domino!
Take Care.
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Hi everyone,
Thx LPLibrarygirl for asking about me.
My stomach issues are minimal now, but I wake up with a headache each morning, and once I'm up and take a few Excedrin It usually goes away. However, as I'm writing this (noon) my headache has returned, my eyes are blurry and I feel miserable. My skin is crawling, and I feel anxious and depressed. I've felt this way before, but never this long of a stretch (since starting Anastrozole) I feel like doing nothing, yet I'm jittery, yet tired. I have no one to pull me out of my funk. I live alone. Found out who my real friends were when Dx.
I've tried the cancer center's therapist - she wanted me to draw pictures, not my type of therapy. Went to a local therapist and she started out describing an elephant. 'Imagine a huge gray elephant with the big fan ears, and wrinkly skin, the spiral tail...ect….. ' then she asked what I was thinking and I said a Tiger. She looked surprised. I walked out. Guess that's what one gets in small town USA.
I saw my Urologist yesterday (re: UTI's and trying to find the root cause of my Sepsis) she came to the conclusion (along with my Rheumatologist, Infectious Disease Dr and Pulmanary Specialist ) its my "Crappy Immune System" causing sepsis. And I cannot take an immune suppressant because it interferes with Herceptin and Neratinib (Nerlynx) if I should take it.
OXYBUTYNIN - got the ok from urologist to take it - she has never heard of taking this for HOT FLASHES. MO prescribed it. I'll let you all know if it helps. Maybe I should start taking CLARITIN again for bone pain like I did during Chemo.
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rjles, it’s good to hear from you! Many of us were concerned about you. I hope your medical team is able to bring you some relief. Sending gentle hugs to you...
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Thanks Green Harbor & All - all of your encouragements are so very helpful, thanks for letting me vent. I have other immune diseases so its not all anastrozole SE's. Its a combo of a lot of things. Have a good weekend.
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hugs to you rljes. I am sorry that you are dealing with so much on top of the cancer. Glad you checked in
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Hey rljes, I'm so sorry it's been terrible. Your tiger story is priceless, but so frustrating to not find a decent supportive therapist when you could use the help. I'm sorry.
I had an endoscopy today, to follow up on the intense acid/heartburn issues I started having shortly into radiation/tamoxifen (which I started at almost the same time). They didn't find anything, though they took some biopsies so I'm waiting for those results. I'm both glad there wasn't anything there and also frustrated if it means this remains a mystery.
If it was radiation related, I guess it'll fade over time. But the radiation oncologist said based on the angle he didn't think it was. The medical oncologist said it could be tamoxifen related but it would be rare. If that's it, then I definitely need to figure this out. I've been taking 40mg omeprazole for about 6 weeks. It helps a lot but doesn't completely solve the issues. UGH.
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It was good to hear from you rljes, even if your news wasn't good. I hope there is another therapist out there who might be helpful. You would think that healthcare providers would be more tuned in to their patients needs both physically and emotionally. I hope your headache has gone away by now. Do you have a nurse navigator or someone else who could check the compatibility of every one of your prescriptions? My husband takes many medications and I worry that his different docs don't pay as much attention to all of his meds as they should. Then I worry about OTC medicines that he occasionally needs...I hope everything calms down inside your body. Take care.
Salamandra, it must be frustrating not to have any more information after going through another test. Maybe it will just fade away as you mentioned. In the meantime, I hope you feel better.
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Thank you! I think it may already ne tapering off. I did start taking magnesium and turmeric. I’m Not sure if that had anything to do with it or not but I will continue.
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rljes- I am so sorry you are having such a rough time. I do hope you can find relief soon. Is there another therapist you could try?
Salamdra, I hope everything comes back good on the biopsies they took during your procedure. How frustrating for you to not get any answers. But as you said, good nothing menacing was found. I hope they can find something that works. You have been struggling with this for a while, that must get tiring.
T-minus 4 days until I start tamoxifen. Pebbles and others taking an ease in approach, how long did you do the 10mg? Also those of you taking magnesium what was the type you took? I know the answers are somewhere on here but my fatigue that has returned seems to be taking over my brain power. I might be crazy but I am meeting with my neurologist tomorrow and want to discuss weaning off my elavil that I take as a preventative for my migraines. That alone causes brain fog and I am really self conscious about it and had noticed it getting worse even before my diagnosis, but then that dominated my time obviously. I am fearful she will not be supportive, as when I brought up the brain fog at a follow up when I first started it she said it didn't cause that. I blindly believed her but have now been researching and in fact it does cause memory problems. I will literally be talking and the complete wrong words will come out, it is embarrassing. Sorry for rambling on but just needed to get it out.
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Dani, I am just finishing my third week of a half dose, 10 mg. (My first week I only took it every other day.) This coming week I plan to alternate with the full 20 mg doses every other day, and then go full throttle next week. No doctor approved this plan at all, it’s just what I came up with after reading other people’s experience. I really can’t say I’ve noticed any definitive side effects so far. I get migraines too, but haven’t had more than the usual number; in fact, I had a couple of headaches last week that actually responded to Tylenol, which my migraines never do. So I am hopeful.
I was about to post the same question about magnesium, so will wait to see the answers you get!
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Thanks everybody for your support !
Dani444 - there is a new preventative migraine by Lilly on the market and on the world news tonight they said its free for a year. EMGALITY its called0 -
I was placed on Femara in 2008, but my bc spread to bones to stage IV (so they say). Was soon put on estrogen receptor therapy, Faslodex. Still alive, but in horrible pain from side effects of drug. Had to get spinal surgery, (cervical) , and might have it done on lumbar spine. (Severe spinal stenosis. ) Ever since, walking has become unbareable! I will be talking with Dr. this month about getting off the drug.
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Hello Wokewoke! Welcome to the forum. Hope you find the support and encouragement here that you are looking for.
Sounds like you've had a difficult time. Hope your team is able to get you some relief soon.
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