Starting/declining hormone therapy Nov, Dec, Jan 2018
Comments
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Spoonie77 Yes, it makes sense, because you kind of have two bad choices, ugh. Your situation sounds awful. I'm so sorry. I feel really disappointed that there's no better treatment plan that you can tolerate. What does your MO say? And, is there a chance that seeing your PCP might help, just to rule out any other reasons for all these symptoms? Keep us posted, and warm support to you.
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Spoonie - that makes total sense. Take care
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Hi HikingLady - I've been to see my PCP 3 times in the last 2 months. Had CT scans, labs, tests, etc and another referall to PT. Even though I already go to PT and it hasn't helped the bone/rib/fatigue symptoms, neither has Acupuncture. Which is bizarre, since prior to adding Tamox to the mix, that therapy was very helpful for most of those symptoms. Now, not so much. So basically my PCP & MO cannot find anything to cause any of this, other than attribute it directly to my starting Tamoxifen.
I've had rough spells before, given my chronic illnesses, but never lasting this long and so severely. I think, just the combo of the 2 is too much for my system to handle.
Saw my MO on the 21st, that's when she rxd the Gaba in hopes of helping with the pain/fatigue. It's been 9 days and nothing so far. She did say it could a month to see results, possibly, but I just don't think I can hang on without wanting to jump off a bridge in the meantime.
Thanks ladies for letting me know that my babbling makes sense. I just want to feel like I'm living again.....(as my eyes well up with tears). Existing for the sake of existing is a miserable place to be.
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cassiecanada- I'm in the same boat. Tamoxifen has been in the cabinet for 2 weeks. I was waiting for my 6 week post-op appt (which was today) to get the all clear to reintroduce my daily exercise routine, hoping that will decrease any SE. I have the all clear however, feel a bit paralyzed.
The logical voice in me says...even though my reoccurence risk is low I've come this far I may as well give it a try. I can always stop. Again, still paralyzed. Maybe I'll feel differently in a few days.
hikinglady- I've spoke with 2 women and like you they did not have any issues they couldn't handle in the 5 years. Thank you for sharing. Your post helped.
I've already been experiencing hot flashes and night sweats, as well as vaginal dryness. All manageable SE from a hysteroscopy performed in early Feb.
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Hey Spoonie,
I hear you. It's been such a struggle for me and I don't have the comorbidities that you do, I think you're a hero for even trying.
I'm about to start my 4th brand of tamoxifen. If things don't improve... I may take my chances. I'm missing so many important events in my friends' lives, and all the little less important ones that make friendship meaningful. I have no energy for anything besides work, and not really enough for work either - I feel like I'm constantly just above drowning. I'm not in a financial position to afford to be able to take a reduced schedule or disability for 5-10 years, even if it would be approved. UGH.
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I think the key with any medication is balancing the risks, benefits and side effects. The doctors can give us their best advice, but it's still OUR lives, not theirs. Spoonie and Salamandra, tamoxifen has been an awful experience for each of you. Your decision to keep taking it (or not) has to feel right for YOU, not anyone else. One of the lessons that I'm learning from breast cancer is that we're not “one size fits all". I'm sending love and support to you both, and to anyone else who is struggling. Heck, I'll send love and support to all of us; we deserve it!
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cassiecanada Yep right there with you. My MO already ruled out the AIs and I'm not really interested in tamoxifen. So now we're both waiting for the MammaPrint results to see what my recurrence risk is. If it's as low as I think it is, I'll pass.
HikingLady It's such a personal choice, isn't it? I don't know for sure what I'd do if I were in your shoes, but I suspect I'd follow my MO's suggestion and take the tamoxifen.
Spoonie77 You've had a rough hand dealt to you, no doubt about it. If I were queen of the world, it would be otherwise for you for sure.
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Hi Spoonie- I admire your courage.
I decided to decline meds altogether
because i have decided that I want
to live now versus suffer any side effects
frim meds. If it recurs, I will cross that bridge when i get there- our pathologies
and recurrence rates are different, however, i feel that because my
only obssession is fitness, cycling
marathons and weight training , that
if i lost an ounce of that due to
side effects i would suffer far greater-
its almost as if i just want to let
my lot in life unfold as it will-
and just keep on doing what i love
most- my headspace just wont
risk any side effects-so if and
when i get a recurrence/mets
i will face that then - right now-
i accept my risk- and will suck
it up if i get a recurrence etc- and
try ti live each day to
its healthful fullest-
so in other words, i understand your
thinking.0 -
wow edj3- keep me posted-looks like
we are on same page-0 -
Hey 41619Cour- please let me know
how things go0 -
cassiecanada Some of the reasons you mentioned for not taking the meds are the same as mine. I'm an avid fitness nut and my drug of choice is running. I'll be damned if I stop running because something nasty grew in my breast--plus (and to be totally honest) running is the best brain defrag tool I have. It keeps me grounded and calm.
Having said that, I'll also acknowledge that I'm not great at paying attention to signals that something's wrong. My pelvic fracture happened because I overtrained -- well really, I over-raced last spring. Between mid-February and the end of May last year, I ran a 10K, a 12K, two half marathons in April, a 5K with my husband in May, a third half marathon and then a 10K on Memorial Day. Those last two races I did on that fracture.
So that's why my MO has already said nope to the AIs. In fact, he's referred me to an endocrinologist because of the osteopenia and fracture.
My plan/hope is to run while going through radiation so fingers and toes crossed, I don't experience the really bad side effects.
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rock on Edj3-i finished radiation 3 weeks ago and was hell bent on not skipping
a beat in the fitness obssession-
Each woman is unique regarding
their cancer, pathologies and
their own bodies responses to treatments-
i feel very fortunate that i experienced
no fatigue or redness... a small rash
only on upper quadrant of breast one
week out from surgery- I worked
out at the gym and cycled etc all
throughout- went straight to gym after, in fact- and not one issue- i was worried
that my cardio would be compromised
because 20% of my lung was in
the field of radiation- yet, strangely,
so far, zero difference noticed in my
exact same regime. My RO also
gave me the greenlight to exercise
etc as much as i wanted/felt i could-
Good luck to you! kerp me posted
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Hi ladies,
Been a long time since I checked in as I took a “break" from the boards while in Italy and it was work work work as soon as I got back. I've still been reading the posts though! No way I can address everyone but quickly to...
Spoonie - miss warrior princess, keep fighting with whateverdecision you make. On Gabapentin, it's been prescribed to our dog Tucker who had arthritis and was limping around, and it seriously took him from acting like a 17 year old dog (his actual age) to a 5 year old pup again! Gabapentin, glucosamine and an extra daily walk have done wonders for his joints. Not sure if the example counts but it's at least another encouraging example for Gabapentin.
Dani - definitely find an MO who can support you! That's key!
Sugarmaple - low WBC count may be related to a bacteria or viral infection too... how are you feeling?
GreenHarbor - Amen to your point re: our doctors are a great source of advice and consultation but it's OUR lives and the decision is ours! That's exactly how I feel too, and who knows our unique situation better than us, the ones going through it everyday.
Salamandra - somewhere back here I posted the brand I'm on and I seem to be faring fine on 10mg tamoxifen, have you tried that one?
HikingLady - thank you for sharing your experience!
To the ladies who are nervous about an upcoming mammogram - I'm with you, me too, totally understand the nervousness. My year out mammogram is in September and I'm honestly trying not to think about it now because when I do, it stresses me out. This is both a mental and physical fight isn't it?
All ladies - Italy was amazing, I'm still on 10mg tamoxifen daily and doing fine - have not experienced any major side effects or maybe I just don't know it, but I still feel like me and that's what counts. I see my MO in June and we're going to discuss whether I up to the 20mg dose or not. Frankly I don't want to. If I'm fine at 10mg I'd rather keep this for the next few years.
Domino and Tucker say hello!
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pebbles, glad you enjoyed Italy! It’s amazing.So many times I wish there was a like button. We all just have to do what is best for our own situation. And keep supporting each other. It is a tough journey! For me, off the meds I finally feel like me, my knee pain is gone, I am sleeping, and no hot flashes! Now if I can deal with my new diagnosis of osteoporosis.
But each of us has to do what is best for our situation!
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Hi Pebbles! I hope you were able to leave your worries behind while you were in Italy. I’m also super glad to hear the 10mg of tamoxifen is sitting well with you!
Re: my low WBC count-I’m just kinda fatigued and weary feeling. I’ve never had a low WBC count before. And I’m not one to feel tired day after day. I’m thinking of looking around for a new MO, maybe they can help with this puzzle.
Hello to all you other gals out there! I do love knowing we have this space to commiserate, vent or just be there for each other in so many little ways.
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HI all --- Just wanted to tell yall that I stopped taking my Tamoxifen 5 days ago and the difference is FREAKIN INCREDIBLE!!!!!!!
My birthday is tomorrow and mentally I just couldn't handle feeling like death every day, so I stopped. Like you all reminded me, I gave it all I could with that. Maybe if I take a break for a month, I might feel like trying a different brand or giving the injections a go around. But for right now, I'm just going to enjoy feeling a bit like my old self a little more each day!
I woke up this morning, and instead of being in insta-pain and tears, and limping around to get out of bed, I just got up. No feeling like my joints or spine were broken or 90 years old. Not only did I get up, I actually fed my animals, and then DID THE DISHES!!!!! I was like OMG it feels soooo wonderful to just stand up and do the dishes! Isn't that insane????? Two weeks ago that would have been impossible on many fronts, just feeding the furbabies would have had to wait at least 30 mins or so until I had recovered enough energy from just "getting up".
Seriously, I can walk, go up stairs, go down the stairs, do dishes, laundry, get out of bed without crying, and so much more. My body is just soooooo happy to not be taking that dang Tamoxifen. I imagine in a few more days I'll be even more back to my normal "spoonie" self, and I'm thrilled. I was worried it would take a long time to start feeling less pain and less fatigue. It's definitely been gradual but it's increasing. My mental and physical health is just celebrating.
Anyway, I just wanted to share the news with you all. Thanks for being such a good supportive, sounding board for me as I struggled through this ordeal. I know I couldn't have made it that long without you all. So just know I appreciate every single one of you, my friends.
PS ---> PEBBLES so glad you had a lovely trip and enjoyed some time away from the boards. We all need that once in awhile! I'm sure Tucker and Domino were ecstatic to see you finally come home. I wonder did you bring them new toys or fashion items from you galavanting? LOL.
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Spoonie, I’m so glad to hear you’re feeling better. Great news!
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sugar maple, ask your doctor about rejection of the silicone implant. It cause similar side effects
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Michelle - that is good to know.
sugar maple - diet can also cause low WBC. People on vegan diets often have low WBC counts, though that doesn't lead them to get sick more often than non-vegans. Make sure you're getting enough protein and maybe consider taking a multivitamin.
Pebbles - welcome back! Did Domino get to go to Italy?
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Spoonie, glad to hear you are feeling like your self. Sometimes it is hard to believe the difference!
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Spoonie, what great news! I'm so happy you are getting relief and feeling better. 🎂 Have a happy birthday tomorrow!
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Spoonie!!!! I am so glad to hear you are feeling more like yourself every day! I hope you have a great birthday!!0 -
Thanks everyone! I did end up having to cancel my dinner plans with my girlfriends (body is still not totally cooperative) tonight. We are rain checking and going to attempt a celebration at a later date. I'm not bummed as my mom and dad are on their way over, so at least we'll get to hang out and watch a movie later. I'm so thankful for the small things these days! Even though I'd love to be doing so much more I am sooooo grateful that I can do this much today! A few weeks ago this would have been impossible. I think the best present I ever gave myself for my birthday has now been to stop taking Tamoxifen.
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Thank you hapa and Michelle-I will check into a regular multivitamin and it also never occurred to me that my low WBC count could be a silicone rejection. Very interesting-thank you!
I love all the wisdom here. I hope this week has been a good one to all you gals
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sugarmaple..so sorry you are suffering. IMO rejection of the implants is very uncommon but not impossible. I think that I mentioned to you that I have has a low white count for many years. Docs don't seem to think its a problem. May I ask how low they are?
Spoonie...so happy you feel so much better after stopping Tamoxifen. Its crazy that you got that much relief in 5 days! QOL does matter! Since you feel so much better maybe you could incorporate exercise now. I don't know if you need to lose weight but daily exercise and weight loss has been shown to lower recurrence rates by 40-50 percent which is about the same as taking Tamoxifen. Here is wishing you continued good health Keep us posted.
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Hi dtad,
Thank you for reaching out with info earlier
It’s at 2 right now (The range is 4-11). I wouldn’t have thought about it but the Dr called, sounding very concerned-we did a follow up lab work a month later-still same results but no action taken. Currently, I’m just left to wonder :Yay Spoonie! I am so happy to hear you’re feeling better. I had VERY similar SE’s on tamoxifen-I stopped taking it after 3 weeks, back in December, and I haven’t gone back on it.
Sending happy and healthy vibes to you all!
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SugarMaple - Can I ask what is at 2? (range of 4-11)? Is that your WBC? I'm sorry you're in limbo land. I had low WBCs the first labs run after 1 month on Tamoxifen. Like you, I'd never had an issue prior to this one. Thankfully, the next month they popped back up. I had originally thought that was alarming, but when I asked my PCP about it, she explained that even though my actual WBC is low, the percentage of makeup of the 5 kinds of cells were in range, so she was not alarmed at that point. If that makes sense?
Starting on page 4 - this document explains the breakdown of percentages in WBCs. I found it really good info when I was freaking out about my own labs. Maybe this might help you a bit.
Complete Blood Count In Primary Care
Also, a study has been done recently on WBC and IDC:
"White blood cell and platelet indices as prognostic markers in patients with invasive ductal breast carcinoma"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4950562/
Dtad - I think it's crazy too that in that span of time I was feeling better. Perhaps it has something to do with my dosage only being 5mg instead of 20? I'm not sure but I think that makes some sort of sense. LOL. In any case, I think it is going to be a bit of a back and forth type thing, since I've now noticed that my body seems to not know what the heck is going on. I have hot flashes and night sweats galore which seems bizarre, plus apparently I'm going to have a period for over a week, but who knows, my Spoonie body is just weird and reacts weirdly to everything! All I'm focusing on is that at this point I'll take the sweats and heat over pain and fatigue!
Thanks everyone for the continuing support!
Wishing you all the best this weekend. May you find a bit of joy and contentment in each of your days.
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sugar maple, A very good friend of mine, just had her implants removed after having them less that one year. They became encapsulated and the silicone leaked into her body. They made her very ill. She had to go to a specialist, of some type,for diagnosis.
Everyone that is taking or has completed Tamoxifen therapy, 5 years or more, please join us on a new thread called Tamoxifen Road for support and encouragement, as we live this journey together. I am in my 3rd year and am doing fine.
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sugar maple...mine range from 2-4. It really hasn't been a problem except for once when I had IVIG treatments which lowers them even further. At that point they were at a dangerous level. So other than that my docs don't seem concerned about it. I've always attributed it my multiple autoimmune diseases. Others have said it was caused by Tamoxifen. Hope you find some answers. Good luck and keep us posted.
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Have any of you had eye pain while on any hormonal treatments?
I am concerned...for the past 3 days my right eye feels pressure and pain. No redness. No itchiness. No dry eye. No issues. Just pain/ache in the eyeball itself and blurriness feels like it's creeping in today.
Thoughts? Similar experieneces?
Am going to contact my MO and run it by her. Just seems odd timing since I just stopped Tamoxifen about a week or so back.
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