Starting/declining hormone therapy Nov, Dec, Jan 2018
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You ladies are just the best. Thank you for all the continuing kindness and love. I'm overwhelmed.
Tomorrow is another day and I feel a bit better, more centered, after a LONG nap, a cupcake, and good long talk with my best friend and also with my sister, who's also my best friend. I'm lucky to have some great people in real life that are in my corner, I know not everyone has that and I am forever grateful for that. Between them and you all, I'll make it through this next chapter, whatever it may bring.
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Spoonie--wishing you a marvelous Tuesday.
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Bless your heart Spoonie so sorry you are dealing with this. BC the gift that keeps on giving. I hope it’s nothing serious.
I know about second guessing because when the Path report showed a micromet in my SN after my lumpectomy I told my BS maybe I should have done a MX. As it turned out it was not the big deal I thought it was. I had the Oncotype test done because my MO thought it was necessary. Luckily I had a low score and dodged chemo.
We do make the best decisions at the time for us. I had a good medical team too. Good grief none of us was prepared for this DX so we follow our doctors advice and treatments and hope for the best.
I am blessed to be 8 years out next August so there’s plenty of reason to be optimistic.
Keep us posted.
Diane
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SheWra-Do you think you might tolerate an AI better than Tamoxifen? I have been taking letrozole since March and have little energy and most days need to rest in the afternoon. I keep hoping I will get more stamina. I know I need more exercise and that should help, but I feel too lethargic to try to go for a walk. That said, I wonder if a different type of medicine might work better for you? Or maybe things will improve with time?? Since I declined chemo I hope to be able to stick with letrozole. I wish you well.
Spoonie-Well, that is not the news we all hoped to hear. But your MO listened to you and reacted quickly so that's good. Waiting to meet with the surgeon is going to be so hard. Can you get on a "cancellation list" and maybe get in sooner? Did you ask about bone pain? Wish I could give you a hug!
Dani-Are you managing work okay with your fatigue? Salamandra-We haven't heard from you for a bit. I hope you are enjoying vacation and doing well. Pebbles-Glad you are okay. We all need a dose of Domino and Tucker so come back soon!
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Just caught up on all the posts. Oh, Spoonie, I am so sorry! Waiting is absolutely the worst. Sending you gentle hugs.
I couldn’t deal with Lupron, so I just had my ovaries removed. No regrets. The hot flashes actually improved. I am sure Lupron was messing everything up.
Everyone, stay strong! We will prevail!
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Thanks everyone. I'm so empty right now. I know this is temporary, in a few days or weeks from now, things will be better. It just all seems so much.
On top of it all, I don't think I shared this but last month my mental health care was taken away from me. They have an attendance policy. They didn't wouldn't make exceptions/modification to it based on my long term disability that I've had since 2007. So they kicked me from further care anywhere else in the network. I'm appealing but that takes time. SO I'm dealing with discrimination, a possible recurrence, and in addition, I take my pup Gypsy in tomorrow morning for her 3rd liver lab in as many months. If it's still super high after the antibiotics and cleanse her vet put her on, we have to do an US on her abdomen and find out if she may have cancer too.
Uggggh. I'm in burnout mode and trying to self preserve at this point. I need spoons. Desperately.
Here's Gypsy - love her to pieces.
Anyway, if I'm not on or posting a ton, it's just cause I'm in conservation mode.
Sending you all healing and hugs. may this week treat you all kindly.
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Oh spoonie your world is rough right now. Totally get staying quiet. Your girl gypsy is adorable wishing her nothing but good health and good lab results. Same goes for you. Sorry I can't help you with the mental health benefits cause you are in the states. I'm in Canada but have been a therapist for 20 years. What they did was wrong on so many levels. Wishing you luck in every area of your life right now.
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Thanks Giddyup. That's sweet of you to say. I was distraught to say the least when I lost my mental health care through no fault of my own. I simply cannot control my disability and that affects attendance unfortunately. I'm hoping there can be a resolution somehow that doesn't take too much energy or spoons. I will keep you all posted on my puppers and what I hear from my SO when I see her. Just know if I'm quiet, I'm still thinking of you all and sending you healing, peaceful days of your own.
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6 months now. My risk is moderate. Did you say 3%? Yikes, not very much
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Waiting for my pups liver labs to come back. Uggh more waiting. Soooo hoping she doesn't have cancer too.
Saw my Psych today. She rxd me an additional anti-anxiety med to help me get through this tough 2 weeks of waiting until I can see my SO. Hoping I can sleep finally.
Am really trying to not worry but how can I not, not when if this is malignant I'm facing more surgeries - best case nipple/areola excision, worst case BMX since I've had RADs already. And maybe chemo this time. IDK. So much up in the air. Trying not to figure out how many balls are being juggled but with my personality and wanting to know/plan/etc it's tough to stop counting.
Send good vibes and all the "grey squirrel" luck you can my friends. This Purple squirrel just wants to be "normal" for once.
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Hi Spoonie - glad your psych gave you meds hopefully that will help you sleep. I'd tell you not to worry but you will because we all do. But know there are always people thinking of you and wishing you the best of outcomes. All those good vibes should have some power. I have a weird trick for bad things in my life - get a jar write all your worries on a piece of paper put it in the jar put on the lid and put the jar away until a day or two before you need to worry about them). With regards to your pup and I am sending nothing but good wishes her way. One of my dogs did have cancer and he had chemo (way easier on him than on a human no side effects and they were pills). He lived till he was almost 14. Not meant to be depressing but even if the news is not what you want there is still a lot of hope. Wish I could take your worry away but since I can't know I will be thinking of you both.
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Grey squirrel, horse hoof beats, soothing ocean wave sounds, all the flowers that bring you joy and NO bad test results for beast or human. That's my wish for you.
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Spoonie, waiting just absolutely sucks. I always feel so powerless. We are all waiting with you! I was at the vet yesterday with my dog (just a check up), but he’s 18 so even a check up makes me nervous. Hector the Jack Russell terrierand I send love and healing thoughts to both you and sweet Gypsy.
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Canadaliz - interesting to me that you weren’t told anything about your side effects and not referred for monitoring. Do any women think it’s time to let the world know what really goes on? This is a disgrace! No monitoring and won’t disclose side effects so you can make an informed decision. In a nutshell, it’s ok what’s happened to you, better than them being ethical but losing customers! Money is more important than women’s lives.
And what % benefit were you given? For me they managed to disclose it was 3%. I don’t want their dark ages medications for a 97% fail rat
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Spoonie77 "It's a shame that MO in general seem to prefer not to scare us away, yet by doing so, they potentially put our lives in other forms of jeopardy. I agree with Wised wholeheartedly, that no matter what, patients have the right to know all pertinent info, and to deprive us of that is a violation of rights IMO." 100% agree.
I'd change the words "a shame" to criminal.
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GiddyUp, GreenHarbor, and EDJ3 -- your posts brought me a whole load of warm fuzzies. And EDJ, how did you know I love horses and the ocean? LOL. One of my favorite mental imagery exercises is to picture an entire scene at a sun-filled beach, population me and a horse, feeling the salt breeze on my face and in her mane as I lean against her, feeling her warmth and strength grounding me in the moment, and listening to her calming heart beat, as we the waves lull us to calm and peace.
Thanks ladies for continuing to keep me and my pup in your thoughts. I do have some good news to report. Gypsy had her labs and the vet called yesterday. They are not in range BUT they are no longer 400 above range, only about 200, so the treatment is working!!!! Vet says to continue the meds she is on for 3 months and then we will recheck the labs again. Yay! I was so relieved to get that call.
GreenHarbor - Hector looks like a lovely companion! Who couldn't love that handsome face! Gypsy is also part Jack Russell, although the vets when I rescued her say that she is also part mini-greyound. If you could see her run, you'd believe it, plus she is an emotional WRECK just like all of the greyhounds and minis I have ever met! LOL. Anyway, get Hector some pats from me and tell him his friend Gypsy is doing better.
EdJ3 - how are you doing after RADs? Is your skin less angry at you? Any fatigue hit you? Hope you are on your way to getting back to full speed.
GiddyupGirl - Love the jar idea!! Thank you for sharing. I think that would be helpful and a great physical reminder that I haven't forgotten about the worries but they are safe "over there" and when it's time I can give myself to worry about them. Awesome. I'm sorry to hear about one of your pups having to battle cancer but am so glad he lived a happy 14 years with you. I'm sure it was quite the fun and loving life! My last cat, Onyx, had a brain cancer and was untreatable, eventually. Had to help him over to the Rainbow Bridge in 2014. Miss him every day as he was my constant companion through some dark days. Amazing how much the love and companionship of furbabies can change our lives for the better.
In other news, the new med my psych rxd me finally let me sleep last night!!! Wooohooo. So now in order to sleep all I have to do is take my Lunesta, take a Clonopin, and then take 2 Hydroxyzine! LOL. Usually that many meds I would never contemplate taking at once, but with how my sleep has been I really don't care how it gets done, at least I can sleep!
Wishing you all a wonderful and happy and healing weekend.
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I am so glad to hear you got some sleep--sleep deprivation is awful and at least for me, tends to make everything I'm dealing with so much worse.
Skin is peeling/healing, fatigue . . . well that hit me super hard last week. Boo.
Wish me luck. Monday I meet with the endocrinologist my MO wanted me to see re the osteopenia and the fracture I had last year. Tuesday I see the psych from the cancer care team because I am right royally angry and need some better coping skills. Friday I see the MO, who will most definitely expect me to hop on board the tamoxifen train.
I'm sort of dreading all of this to be honest.
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Spoonie - glad to hear you are sleeping and even better that the news about your pup is good news, that is a huge relief. I get it about the horses - I don't have an ocean but I do have horses and they give great calming cuddles.
edj3 - totally get dreading it all. You can make seeing the psych somewhat fun (it can be fun to mess with their heads a little). Hope it is someone you click with. You have a right to be really angry. Have you ever done plate therapy - buy dishes at a yard sale pick a wall in your house, put a large green garbage bag on the floor in front of it and then just start throwing. You can put a picture on the wall or write words on paper and pin it to the wall about what you are angry about. It can be a great stress reliever.. Or get a punching bag - you don't get in as much trouble hitting it as you do if you hit people
The fatigue I have and it sucks, so, much sympathy. Sorry about the peeling but happy about the healing. And very sorry you have more crap to deal with. Lots of hugs and good wishes that everything turns out to be easier than you thought.
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Yay for sleep! Yay for the pup's treatment working! Sleep meds are a blessing. I have tried all the ones you mentioned but never together. What a clever doctor you must have!
I'm on my one month break and it's so nice. I'm not back up to normal energy levels quite yet but definitely getting better. I took a very sedentary/easy summer job with crazy long hours and it seems to suit my mood and energy, and it's getting me out of the house every day. I do still want to go back on tamoxifen but I think I'm going to gird myself and be insistent with my MO that I need to already have a prescription for provigil or whatever she thinks might help counteract the fatigue *before* I'm incapacitated.
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LOL@plate therapy!
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edj3 - if that made you laugh I should take a picture of my plate collection - they all cost me 5 cents each from the hospital thrift store. Poor things didn't know what they were in for. Have a fun Sunday. I am back to the rads tomorrow.
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Soooooo as you all can see, its 3:38am here in MN and my sleep med combo is losing hardcore to my anxiety. Ugggh its a tough beast tonight. 2 clonopin, 2 lunesta, and 2 hydroxyzine and I'm still awake, only slightly groggy. Can't get past the last layer in the pit of my stomach that keeps me awake I guess. Anxiety is a beotch.
The past 2 nights I slept decent, for me, which is saying something but my new nipple pain from the lump keeps waking me up. Fun stuff i tell you. My nipple hasn't hurt this bad since RADs. 7 more sleeps and then maybe some answers. I cannot wait.
Anyway, enough rambling....thinking of you all my friends. May the Sandman have zonked you all sleepily out.
EdJ3 - This week holds a lot of unknowns for you. Was thinking of you today. Fingers were crossed that the Endocrinologist appt was a positive experience. May you be paired today with a wonderfully kind and helpful psych. Managing the emotional ins and outs of this disease is a mine field, at least IMO. Keep us posted when you can on how everything goes with the various appts, including Friday & your MO. The tamoxifen train is a tough decision. From my experience it really comes down to how much absolute value it decreases your risks vs the affect to your quality of life.
I delayed starting mine....my first MO was not happy but respected my decision. My 2nd MO also respected my choice but took the time to make sure in my case I had been fully educated on all of my risks and what they meant for me specifically, and i had not.
The new info she gave me, I thought on for another 2 weeks plus asked for more studies, all of which she provided. She told me even if I still declined it was ok & my choice, and that we would move on to a Plan B. I decided to start 5 mgs and see how things went. In the end it didn't work for me but others have success working up that way to 20 or even staying at 10.
Perhaps your MO might be open to you staying at a lower dose and either working your way up or staying at 10? Give it a shot & see what they say. They might surprise you.
Salamandra - I'm so relieved that the one month break is helping reduce your symptoms quickly. I had a similar experience coming off of mine. Mentally i felt better in a week or so, extreme crushing fatigue, bone pain, and hot flashes gradually faded over a month. Then i had my Zoladex injection, so my helpfulness stops there. Lol.
Also. I like your plan about the provigil etc. If she balks, maybe explain/remind her that you already had levels of fatigue before that significantly altered your life, work & social, previously that required you to take this med break in the first place. If you go in without anything to counteract that, what will be different? That's what id ask if it were me. If she doesn't have an answer, then ask her what's the harm in arming me with a possible silver bullet to stay on Tamoxifen because isn't that what we both want in the end? Lol 😁
GiddyUpGirl - I'm working on my WORRY JAR. Found a great old mason jar to use. Tomorrow we are supposed to get rain so I think ill be getting creative & filling that sucker up. How's RADs going? You're nearing the end soon? Hope your skin is holding up, especially with having to be outside with the horses. My boob was a vampire and went over to the dark side rather quickly. Sunlight became my kryptonite. Lol - i wonder how many different sci-fi references i worked in there? Anyway hang in there my friend. Homestretch is the worst but you can and will do it! Can't wait to see those flippers on the last day! 😁
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Oh Spoonie77 I wish I had a magic wand to give you restful sleep but more than that, no more cancer.
You're very perceptive, this is a week of big deal (to me) appointments. I was up front with my husband this last weekend, said I was dreading all three appointments for different reasons.
The endocrinologist was great. He listened and heard me, which isn't the same thing. You might remember I fractured my pelvis last summer, which is how I was dx'd with osteopenia. Well my endocrinologist said that actually the values in my left hip indicate osteoporosis (hard to type that word, keep wanting to type osteopenia!), and by virtue of the bone having broken in my right hip, that was osteoporosis too. That was a blow. Plus I've lost 1/4 inch in height, which didn't alarm him but bothers the snot out of me. I'm not that tall that I can throw away quarter inches here and there.
So he's having me get some lab work done to rule out easy to address causes (celiac disease, which sometimes manifests as osteoporosis, and also a check to see if my kidneys are throwing away the calcium I get in my diet). Assuming those labs are as boring (his words) as all my other labs (because I'm ridiculously healthy except for the two cancers and this bone issue), then we'll look at drugs. He wrote out the three choices, talked about the benefits, side effects and also pricing, which I found amazing since yes unfortunately cost does matter.
I'm 59. Staying very physically active is part of who I am and what I love to do, which is why the tamoxifen alarms me. The types of side effects do seem to conflict with the things I like to do--it would be hard to run a half marathon with the kinds of joint and bone pains some of you have experienced. So if this bone loss isn't from one of those other causes he mentioned, I will give the bone loss drugs a try.
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I have osteoporosis. It can be brutal at times. I take the OTC drugs everyday and Boniva once a month. My MO prescribed Arimidex when I was DX because I was post menopausal. Arimidex attacks the bones and I already had osteopenia so when I complainedshe switched me after one year. Some damage was already done.
I still have occasional pain in my hip where osteoporosis is but now it’s at least tolerable. The meds do help.
Diane
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edwards750, which OTC drugs do you use? My endocrinologist listed three options: Forteo or Tymlos; Prolia; or Fosamax.
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Bone Loss: I was diagnosed with osteopenia before starting my AI, so I'm on an infusion of Zometa every 6 months. The day after the infusion (I've had two of them now), I feel super tired, and I need a big nap and I'm slow. Otherwise, zero SE's from it. I'll have regular DEXAScans every year or two while on my AI.
Zometa is expensive. My health insurance covers it because of my diagnosis, and it has that extra benefit of some protection against bone mets. Super convenient not to have to take another pill every day, and 2 infusions per year is quite easy for me to accept.
Bone healing issues....I've been super healthy and quite fit my whole life except for cancer twice, ugh. However, I had severe midfoot arthritis by age 60, and I had a midfoot fusion (5 fusions and 5 small screws at those sites) surgery in February 2018, right before my April bc diagnosis. One of the screws had to be removed this past December, 1 month after I started Zometa. The bone healing after removal of the screw (which was backing out of a fused area---unusual, not unheard of, had to be taken out with a small surgery) was extra super-slow. In my research, I see that Zometa protects bone density. It also impedes bone healing. !!! Something to do with how the Ca uptake works, I suppose. This seems to be an odd, counterintuitive and strange factoid about this med. My dentist confirmed this. His mild comment was "Try not to need dental implants while you're on Zometa." Ha ha. As if anyone plans such things and can avoid them! I have had only one cavity over my whole life, and just-fine teeth and gums, thank heavens.
I had no SE's of any joint pain or discomfort when I was on Tamoxifen for 5 years (that was for bc#1, unrelated to #2 in 2018. The #1 in 2003 was completely cured by my TX) during ages 45-50.
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None of those. I take calcium citrate, calcium and VitD3. I also take Boniva 1x a month.
Diane
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I was diagnosed with osteoporosis before starting lupron + AI, so also do zometa every 6 months. Have only had one infusion so far. The aftermath was not fun but from what I hear it gets better.
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Hello everyone! Hope your Tuesday is going well. I have been reading along, and thinking of everyone, just not posting a lot lately.
Spoonie- How are you? I hate that you are back in the waiting game, as it sucks so bad to be there. So glad to hear your sweet Gypsy had some positive results! What a cute puppers. Damn the anxiety, and no sleep. I hate it, and totally understand. I get a recheck on my lump in the beginning of August and know very well that pit of my stomach feeling when I think about it. Thanks for sharing that info about provigil and cancer fatigue. Hang in there lady and I hope the Sandman doesn't skip over you tonight.
LPLlibrarygirl- As far as working with the fatigue, it is a real struggle. Before my diagnosis I would routinely pick up an extra 12 hour shift a week. Now I can barely make it through my regular shifts. I manage better on my first day back, but really have to push through those last 4 hours. If I work my 2nd 12 the next day it is a huge struggle. I think to myself "How in the world can I get through this shift" but know I do not have much choice. I definitely know that my work performance is suffering but people around me say I am doing just fine. I know they are just trying to make me feel better, my coworkers have been very supportive through all of this. It really is very frustrating.
SheWra- I am sorry you are dealing with the fatigue from tamoxifen, I hate it and I totally get missing the old me! I swear none of my doctors warned me that survivorship was going to be so hard. Or maybe I just suck at it. I really hate to hear when doctors dismiss SE's. Like you said, we know our bodies, just acknowledge that this medicine can really affect our QOL. Denying it does not change how we feel.
Salamandra- So glad you are feeling better on your break!
edj3- Sounds like you have a great endocrinologist, I wish you the best with your testing.
So I am still sleeping better than when first starting tamoxifen, which was only about 4 hrs a night. My sleep is broken but longer than 4 hours so I will take it! I leave for vacation in a couple days and trying to not let my anxiety get the best of me. It is a bit better on the elavil but still gets me sometimes. I am really anxious about being pulled for a pat down at the airport, and worried about having the energy for all of the activities we are doing. The last part of the vacation is at the beach so my butt will be in a chair (under the umbrella of course
and I have all the sunscreen and SPF 50 long sleeve rash guard packed! Wishing everyone a restful week!0 -
spoonie, my nipple disappeared after radiation. My bc was at 2 o’clock near the nipple. Now, I have a bag of marbles with about 20 encapsulated clips and markers in my treated breast. The composition of that breast has shifted with a high protein and low inflammatory diet. I just do yearly mammos and quarterly check ins w/ my MO.
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