Starting/declining hormone therapy Nov, Dec, Jan 2018
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pebbles- I am almost done with rads and soooo ready to start healing! My various shades of red, brown and purple are getting pretty uncomfortable! I am more anxious about the swelling, tomorrow is the last regular treatment then 5 boosts to skin/scar.
I still need to call my MO and ask how long after rads he wants me to start. I have decided to do the slow start to hopefully help with side effects. I have been a bit emotional lately worrying about this implant holding up and starting the tamoxifen soon. I will get it together though:)
Awww what a good big brother Tucker is! Domino looks pretty victorious on that doggie bed!
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I've been taking Aromasin in half doses for a week now... Hot flashes are worse than before, but not too bad. Maybe Winter is helping with this.
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wanderweg- I take Tamoxifen right before I go to sleep. I hear you about being tired in the evening. I’m usually in bed by 8:30 because I just can’t stand being so tired.
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Hello all! It is great there are so many people here sharing their experiences-thank you all for sharing and supporting one another. I am supposed to start on Friday. I’ve not got my pills yet but will ask the pharmacist if they can be cut in half and if so, do them every other day as everyone suggests. Today is my last day off work! Heading back tomorrow and I have mixed feelings. I’m bored at home but not sure I’m ready for the stress my job brings. Going to work on not getting stressed out! Have a great day, everyone
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Hi everyone .... I'm back.
Wow, did I miss a ton! Sort of caught up but the basics of all I can really say after skimming about 10 pages is congrats to everyone for "keeping on" in the face of stress, fear, and side effects! It's a tough thing to do, but we are all doing it, one day at a time. Wishing everyone the best (or keep it going) as they begin/continue on with their treatment plans. Everyone is in different places but I love that everyone is sharing and encouraging everyone else along. That's soooo what we need! Big hugs to you all!
One thing -- Pebbles ...CONGRATS on the 2 embryo addition! Woot!
So, I've been "away". Life has just been hard. I won't whine about it all, but I received 3 new diagnosis' (arthritis in my knees/toes/jaw; neuropathy covering most of my R side body; myocarditis (infection in my heart...AGAIN...UGGH) to add to my long list, had three different MRI's, saw 4 new specialists (rheum, neuro, ophthalmology, and intergrative med), am still going to BC rehab twice a week for my Fibrosis & Lymhedema, plus along with wearing my compression devices and doing 45-60 mins daily of manual Lymphatic Drainage Massage, I am NOW seeing an Acupuncturist once a week to somehow deal with the chronic muscle/skin/tissue pain from RADs and its ensuing damage/SEs.
Oh, and I forgot to mention, had my counselor chastize me for missing our Dec appt, which I cancelled last min due to another disabling migraine that wouldn't respond to my rx meds and had me in bed for two days. She told me (and I quote) "next time, just come in, I will dim the lights. It will be fine." My response in my head --- nuclear bomb!! My response later in my head --- WTF do you know what a migraine even is? Do you want me to puke all over you or die in a car accident on the way to keep this silly appt? My response in the moment -- "As much as I'd like to be able to make it when I have a migraine, I know that won't ahppen. They are disabling and leave me stuck in bed, unable to even care for myself for the day when they do not respond to my meds. I'm sorry to have cancelled but it's part of my disability and not knowing when things like that will happen."
Yeah, that was fun. NOT. Like, they are not headaches my friend. No way. Not even related. It's like calling Mt Everest a hill. Not even same ballpark.
Anway, here I was saying I wouldn't whine, and what am I doing? LOL. Just that. But hey, thanks for listening my friends.
UGGGGGGGh......it is ALLLLL sooooo much. I just didn't have any spare spoons to spend on posting, I just needed them for surviving.
I miss you all so very much but life is just INSANE at the moment. I really want to sit and cry, but feel numb. After so many years of being a young Spoonie, I know tears don't help the situation and make me physically feel worse. I just can't let myself crack cuz sometimes when you crack it's hard to pull yourself back together...know what I mean?
Le Sigh.
Anyway life moves on. Next week, with most appts/referrals/specialists behind me again, I'm hoping to start my DIM. My intergrative med and my homeopath are on board with it and supportive, even if my Onc isn't. I'll be splitting each tablet in half and taking that once a day for the first week. We'll see what happens...hopefully not too much.
Not sure when I will be back on, but I will try to be on when I can. In the meantime, know I'm sending you all good vibes for success with treatment and fast healing and calm days to savor the highlights of life.
Hugs and healing to all!
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Spoonie - sending you SO MANY HUGS. All the hugs I can gather, plus extras from Domino and Tucker (and paw licks, they insisted). I can't even imagine everything you are going through, you are one strong woman to be dealing with all of this. One day at a time (one step at a time even)... and honestly, if you want to have your good cry, I personally think that's perfectly alright. It's cathartic! I had my cry when they were poking about my arm to tap veins that wouldn't tap, and actually a couple other times this year when my sister wasn't being very nice and I was thinking this is not helpful to healing from cancer. Probably the IVF stims made me super emotional, but you are going through so much more than I did/am, and I think you deserve a good cry if you need one!
Dani - good luck with the rest of rads! Remember the 2 weeks post-rads you still need to be super diligent with the lotioning and hydration, and if you get these weird, random stabbing pains they are perfectly normal (check out the Dec radiation thread) and also subside eventually. Totally get it on the emotional lately so I say if you also need a good cry, cry it out!
carebearzzzz - I've been back at work too, some of it is good for a feeling of restore normalcy.
Here's Tucker saying, "Hey everybodeee - it's OK to have a good cry now and then! This is a lot you strong humans are going through!"
Domino in the meantime is chiming in, "Think I can get to that treat at the bottom of the stairs?"
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Oh and I forgot to mention, and I'm sure you all can relate, I am so very stressed when I hurt in a new place or feel a new "bump". My first thought is it's back and then I have to make myself breathe and calm down. Sucks that I have to feel things like this every single day for 45 mins or an hour when I work over my L breast for my Lymphatic Drainage Massage therapy. When I see my PT tomorrow I have 2 new things for her to check. I'm sure they're nothing, probably just enlarged lymph nodes or trigger points, but I'd rather get her opinion than sit and worry about it on my own.
What do you all do when you feel a new "lump/bump" or a new pain that persists? List it somewhere to bring it up with Onc or someone? Tips on dealing with that type of stress?
Share away. Thanks again!
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A big hello spoonie! I have been thinking about you. I am so sorry you are dealing with so much. You are no doubt a badass but it is also ok to not feel it some days. I am going to join you in your anger at your therapist. Grrrrrrr, I have chronic migraine and know the pain you are talking about! If my rescue meds don’t cut it there is no way I should drive a car, I mean sometimes I have to work myself up to rollover in bed. Not to mention I get vertigo and usually sound like I am having a stroke because words are really hard for me during an attack. With everything else you have going, she needs to extend some grace.
I don’t know about what to do with the worry. I would say it’s perfectly reasonable to bring it up with your onc or BS. Hopefully your PT will have a good explanation of what you are feeling. It seems reasonable that we have some new lumps from scar tissue right?
Pebbles- Thanks! And good reminder about the pains, still getting those. I ordered more “ my girls” cream to continue with, I actually ordered the right one so no more “my guys” cream for this girl 😂. Go ahead and give Tucker and Domino an extra treat for their cuteness and encouragement!!
Carebearzzz- Good luck as you head back to work! I hope it’s not too bad your first day back
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Oh Spoonie...I am so sorry to hear about all that has been going on. You have been missed on this thread. Your encouragement, advice and kind words are always appreciated and sharing your struggles is just keeping it real. Do what you need to do to take care of yourself.
I'm curious about acupuncture. Let us know if it helps, and I sure hope it does. Does your cancer center offer complimentary Reiki? If so, it might relieve some stress and anxiety.
It's pretty bad when a counselor, of all people, causes distress. Someone whose purpose is to help with distress and coping should be extra compassionate and caring. How shameful!
Peaceful Wishes to everyone.
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Just took my first dose of tamoxifen. Domino and Tucker were with me and this really is a current picture of what they looked like right when I took my dose! Represents our feelings doesn’t it?
Still more hugs for Spoonie! And all of us!
I just had to post this 30 seconds ago photo... SOooo representative. Optimism and being positive side by side with worry and concern... the times we feel good and the times we feel bleh..
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they look like they are smiling PebbleV
I took dose #2 tonight. Cheers0 -
That photo is perfect. I took my first dose last night, and actually felt really positive that I was doing something to prevent cancer recurrence. Then I woke up in the morning hyper aware of every sensation in my body that might possibly be a side effect, and ended up having a mild anxiety attack while typing an update to my friend. Ugh. I called my nurse navigator and asked for a referral to one of the counselors at the treatment center. I am so glad to have that option; it’s time!0
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that's awesome purple cat. I made an appointment too. I go tomorrow. It is so nice to have that option. I had had a rough couple of days and thought I should utilize my resourcesI hope I don't feel like this after taking Tamoxifen 😂
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I’m sitting on the sofa with a cup of tea and my iPad, and was reminded again why this is my favorite thread. So much kindness and support, and respect for our different choices and paths.
Spoonie, it is so good to hear from you!! I hope the new additions to your treatment team bring you relief. You are such a strong advocate for yourself, but I can understand how that can be draining. If you can’t vent here to your fellow warriors, where can you vent?! I too stress about each twinge and tweak I feel, but stop and remind myself than I’m 52 and my body is gonna start feeling different anyway. Maybe trying to have an awareness of whether the symptom is worsening or just continuing will help? I’m really good at letting the “what if’s” go to dark places. Luckily the Effexor my MO put me on for horrible hot flashes is helping that as well. Just know that we all send love and support your way! Check in when you feel able to.
Pebbles, as always, Domino and Tucker brighten my day by just looking at their photos. I’m glad they’re supporting your first tamoxifen. I was surprised to feel a rush of gratitude when I took my first anastrazole- grateful that I had this treatment available.
Sending love and and a hug to each of you, along with my gratitude
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Spoonie--I really believe that if you have tears in you, they have to come out at some point. Also, I don't think anyone is physically capable of crying for more than an hour. So I agree--pick a convenient time and place and let it go. Then put on some stupid TV or Netflix and distract yourself. I think crying can be a great release and you'll feel better afterwards. (Or continue to vent here--exactly what BCO is for!!)
I don't have much of an update other than <fingers crossed> if my SEs don't get any worse, this will be manageable for me. I started a daily AI on December 1st, and I too try to attribute any little stiff moments/tweaks to being 61 years old. After several weeks off (vacation over the holidays + coming home with a whomper cold), I'm back pretty regularly at the gym and I really do think that helps with the joints.
For those just starting, continue to hang in there and stay busy--distraction from potential SEs is good!!
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Aww, Spoonie. I'm so sorry you have to deal with all this crap.
I met a second colleague in my building who I hadn't realized went through this a couple of years ago. She's on tamoxifen too, and she said that she had (worse) migraines as a side effect and bad hot flashes the first year, but both actually got a lot better after the first year. My other colleague is on AI (she was already post menopause), and she said she basically feels fine.
I have a gastro appointment at the end of January for the intense heartburn I got, that I'm still not sure is from rads or tamoxifen. The RO denied it could be from rads, but I've heard otherwise from others. I think I'll keep it even if I think it's from rads because I had some heartburn before anyway, and it might be prudent. I also switched my tamoxifen from night to morning, just in case, and also since sleep is a weak link for me.
Loving Tucker and Domino, like usual! Congrats on the first dose to Purplecat and Pebbles!!
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Oh no - only dose 2 and I'm feeling some nausea. Anyone else get this? I googled and found some boards and it's definitely a thing, although some people say they got nausea the first week or month and then it went away. So hopefully it's not a lasting thing.
I'm just thinking darn it already, I wanted to be one of those who skated through tamoxifen with little to no side effects just like I did for radiation.
Salamandra - thanks for the info on people whose SEs got better after the first year. So there's hope yet! I hope your heartburn settles down the further and further you get from rads.
GreenHarbor - I too am now sitting here with a cup of tea! Although it's to try and combat the nausea. I really don't want to take a pill to manage a pill. Hoping I can tough through this or find natural ways to counter SEs.
I'm going to focus on this ridiculously adorable image of Domino and Tucker from this morning when I toweled them off after a rainy morning walk...
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I don't have nausea, but my legs feel super achey like they do before my period, but I just finished my period. Is it possible to have a se this soon?
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Pebbles--are you taking it with food? I haven't had any tummy reactions (although I'm not prone to nausea) but I'd think that would help.
HPFULL--I'm keeping my fingers crossed that all of the SEs hit early and then subside rather than popping up several months in.
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Pebbles, I haven't particularly noticed any nausea, but I'm taking it right before climbing into bed when I've already been tired enough to fall asleep almost right away! Still tired from rads, I think. I'm also snacking too much in the evenings, which isn't a good thing but might be preventing nausea. Hope that clears up for you soon!
Spoonie, thinking of you and so hoping you can experience some relief!
Ingerp and HPFULL, my problem with discerning side effects is that between perimenopause symptoms and my other chronic minor physical annoyances I can't tell the difference. I took my first pill on day -- oh, 11 or so; it's hard to keep track when it begins with such fits and starts -- of a period that was accompanied a vertigo migraine that had me wondering if I needed to be checked for brain mets. I woke up the next morning feeling headachey and dizzy, as I had for days, but now that's cleared up. Did the pill help? Or did the pill extend it? Or did it just finally run its course totally independent of meds? No clue. I've had problems with foot and leg cramps in the winter for years, and they've been the worst they've ever been in recent months, all before I took a single pill, probably because I've been chronically tense since September. My emotions feel wobbly, but I also just finished up cancer treatment and am facing an uncertain future, so who wouldn't feel shaky? My tummy hurts a bit, but my diet hasn't exactly been stellar the last few days despite my best intentions; I seem to have been going in the direction of self-pity snacking instead of cooking up all my best veggie recipes. It's almost as if I'm reacting to this new journey by deliberately doing things that will give me the side effects I've been fearing so that when I feel side effects I can reassure myself by telling myself it's just the chips and salsa, the lack of exercise, the caffeine. I'm crossing my fingers that this stuff will suppress my periods, if nothing else.
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question ladies...did any of your doctors tell you that you had to start taking Tamoxifen when you are on your period? I just finished mine and was planning to start taking them on Monday when I get back from a trip.
I’m sorry to read that SE’s are starting for some of you but I’m going to believe for you that they are going to get better with time.
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Pebbles I did have some nausea, try taking it before bed after eating something, so maybe you will sleep through/not notice as much. Also I had to go off of it for 3 weeks due to spotting, now I started on it again and this time no nausea. Maybe its an initial rxn that goes away when your body gets used to it. Or try taking it every other day for a bit--thats what I did sometimes before when I just didn't feel like having 2 crappy days in a row.
PS they did a bunch of tests on me since I had the spotting after 9 months of no periods post chemo, confirmed my estrogen is very low, starting menopause, and my uterine lining is fine (after baseline biopsy). Tamoxifen can cause spotting, therefore I was able to go back on it and my gyn will monitor closely. I prefer to try blocking the little estrogen I have from those breast cells with tamoxifen, rather than aiming for no estrogen/ risks with osteoporosis, sexual SE's, etc of an aromatase inhibitor. Besides in my case where they aren't sure if ovaries are producing some estrogen, AI would not be as effective. MO says he always starts perimenopausal pts out on tamox for 2 yrs.
Great moment in that most recent dog pic, so cute, love those posts, animals always brighten my day!
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Thx ladies for chiming in so quickly. This site/thread rocks!
Ingerp - day 1 I had some dinner after and was fine, day 2 I wasn't hungry so didn't eat except for some granola so that might have something to do with it. I did feel better after eating some pluots and having the tea with honey and lemon.
HPFULL - from the boards I found on others experiencing nausea a lot got it right away so I guess yes, the SEs can come early! But a lot of people have said it settles down once their body adjusts to tamoxifen so hopefully the achy legs for you and nausea for me goes away.
Purplecat - yes there is definitely post-rads fatigue, I had it too! I'm usually a light sleeper so actually enjoyed some nights of full rest and sleep. And I know what you mean re: being super hyper aware of every pain and sting once you started the tamoxifen, I'm like that too. It's definitely hard to discern what is normal and what might be tamoxifen plus you've also got post-rads stuff going on. It's an interestingly strategy to deliberately self sabotage so you won't blame SEs on tamoxifen... maybe see what happens when you go back to the clean eating?
Wigging2000 - I actually asked my onc if there was a certain time on the cycle to start taking tamoxifen and he said it didn't matter. I was going to wait until just after that time of month but it hasn't come yet and I didn't want to wait anymore so I just started, and still haven't gotten my period. I wonder if the letrozole I took during IVF stims and now tamoxifen is messing with all that. On the one hand I don't mind not having the cramps that come with that time of month, on the other hand this is weird.
mLghtn - so good to know you experienced it too! And aren't having nausea now. When you had it was it sometimes or every day? Glad everything is confirmed as fine for you, how nerve wracking to go through all those tests. I prefer the same as you re: tamoxifen over AI so hoping I can cope and the nausea settles down.
On the plus side, no joint pain or headaches or anything like that! And the nausea went away as soon as I had the tea and fruit so maybe it's just a matter of not having an empty stomach. I do have a really funny tradition that started accidentally - after my first dose (8pm) I started moving about (b/c of the whole risk of blood clots thing) which turned into a full on dance-a-thon and a healthy 1/2 of exercise (also because of the studies saying a 1/2 hour of moderate exercise a day cuts your risk of recurrence by half. I did the same after the second dose and my husband pointed out that I would not have exercised both days if not for taking tamoxifen and feeling like I should move right after! So maybe this will turn into a tradition, who knows. I'm definitely feeling more encouraged to be active now that I've started taking tamoxifen, I think because I'm trying to avoid that blood clot risk in the back of my mind and movement is the best way to do that.
Anyways here's one more from the too cute photo shoot of Domino and Tucker toweling off from the rain!
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Thank you canadaliz. I am currently on tamoxifen , did NOT do well on anostrozle or letastrozle. I now have blood in my urine & scheduled for a cystoscopy.
Just a little history on my cancer. I am a 3x cancer survivor. My 1st was in 99, I was 50 yrs old , was ductal type. Did lumpectomy , chemo, radiation & tamoxifen. Within a few yrs I was diagnosed with bladder cancer. 1 1/2 yrs ago I was again diagnosed with bc, this time its tubular, same breast. I opted for a double mastectomy, no regrets & no reconstruction, I am 70 yrs old now. But now have blood in my urine & know that history may be repeating itself. I am questioning the tamoxifen as the issue. But having said that, I was over 16 yrs cancer free. Did it keep me cancer free for those years I do not know the answer to that.
I am a survivor & will continue to believe that.
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Dear kmart,
Welcome to the BCO community. We are so sorry for your three diagnoses but so glad that you decided to join and reach out to our members. We hope that you will find support and information here through the shared experiences of others. Please keep us posted and stay active here as you can. Let us know if you need any help navigating your way around the boards.
The Mods
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Hi everyone.
sorry to hear of migraines spoonie, and the way you were treated. I have chronic migraines, and its debilitating. Thankfully Imitrix Rx usually works for me.
When I was getting my Herceptin IV today, (One more to go!) the pharmacist Oncologist stopped by to go over ANASTROZOLE with me. I thought I would have a few weeks to consider, but she wrote the script and I'm staring at the bottle. Maybe Monday. I have a snow storm to get thru this weekend. Excuses, Excuses!
Bath time for Truman.....
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So I did have some nausea/stomach cramps this afternoon. I also went to Trader Joes and dropped about 95% of the items that I picked up. They just kept slipping through my hands and then I would go to pick it up and it would fall again....total butter fingers.
Wigging- I started mine right after my period ended. My doctors never gave an directions as to when to take it. I feel bloated and achy like I am about to start my period, but it just ended.
PebblesV- I think you might be on to something....maybe we should all drop what were doing and have a dance party at 8pm every night
No blood clots and better moods Purplecat- so sorry about your migraines. I get them super bad but Maxalt works wonders for me. I did have them do a brain MRI to check for brain mets because I get them so bad as was so freaked out when I was diagnosed. They were nice about it an ordered one. No brain mets but mild chronic ischemic vessel changes???!
Love the doggie pics rljes and pebbles
Welcome kmart so sorry that this is time 3. Glad you are on this thread
I am still trying to wrap my head around all of this. I am 45 and have wanted kids my whole life. I knew I was getting older and that it probably wouldn't happen....I am not even seeing anyone lol. I just feel this pit of sadness in my stomach like there is definitely no hope now. I know things work out for a reason and I can always adopt/foster....I just think I am grieving...This too shall pass.
Happy Friday! I am going to do the 8pm dance
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When I scrolled up through the first picture of Domino and Tucker, it looked like Tucker was blinking at me! And then that second one of Domino under the towel, aww!!! Truman is a beauty too for sure.
I talked a bit more today with my colleague on AI, and she said she periodically gets hit with tiredness/sleepiness now. She said it's nothing on the order of radiation fatigue but it's still a SE she's experiencing about 8 months in.
kmart, it sounds like you've been through so much! I really hope there is a nice benign explanation for the blood in the urine.
My doc didn't say anything my cycle and tamoxifen.
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Hey gals-happy Friday!
HPFULL-I’m so sorry to hear what you’re going through. Big hug to you.
Some of you may remember me from the ‘declining tamoxifen’ side of this group. I’m so happy to hear that so many of you gals are having little to none SE’s on it! I’m finally meeting with my Oncologist this coming Thursday...to see what other options we might cook up.
Some of you have mentioned success with weaning in on 10mg-then working up to 20. I’ll definitely mention that to her.
Just had to include a photo of my tortie, Maya...
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Oh helloooo Maya and Truman! Loving the extra cuteness added to this thread.
Some good news today - this time I did the dance-a-thon along with some free weights before I took tamoxifen instead of after. Then I had some dinner with the tamoxifen and no nausea! So maybe it was the empty stomach thing. Here's hoping I can keep it up.
kmart - you are quite the survivor, having dealt with so much already. The fact that you continue to soldier on no matter what comes up is an inspiration to us all.
Rljes maybe you can ask your oncologist about waiting a month before starting the anastrozole? I lot of us waited a month or so after rads or chemo to start to let our bodies heal a little and our oncologists were all on board with the plan, but we had to present it to them vs the other way around.
HPFULL - yes join the dance-a-thon! And I'm 43, I totally understand the thoughts about kids that didn't preoccupy us until this happened. There are options... you could take a break from tamoxifen and freeze some eggs then go back on it? Or adopt / foster like you said which my coworker did and they are so happy with their family. Or have the paw family like my husband and I! We did the IVF things just to have the option. I have a couple friends who are in their 40s and single and they just froze their eggs. There's always hope!
Sugarnaple - yes! Please keep us posted next week and best of luck with the new approach.
Salamandra - Tucker wanted me to post this pic just for you:
And just to reassure that little Domino enjoyed some of the towel off time too...
BTW has anyone noticed that the moderators only post when there's someone new but ignore the rest of us? Oh well, guess I can't complain, they do provide these awesome boards where we all connected, but still...
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