Starting/declining hormone therapy Nov, Dec, Jan 2018
Comments
-
Hi MLanne (waving from the dogs thread)!
ghostie - So wonderful that your hubby is fine either way - mine too. I don’t know... I had this indent at my scar although my hubby still loves me lopsided lol, then it smoothed out and got ‘perkier’ post-radiation! But RO said that might just be swelling. So I’m waiting to see what the final looks like, and yeah I think we have to wait 6 months. So right now not planning on anything as I also don’t want another surgery if I can avoid it (the lumpectomy was my first surgery EVER) but also not closing the door on the option. Esp if it “indents” again. Let’s keep one another posted!
Wised - pls keep us posted on what your MO says about soy!
Happy holiday season to everyone! The husband and I are relaxing on the couch and looks like some paw paws want to join in on cuddle time.
0 -
Nomadd...so interesting that your doc compared exercise to chemo as far as preventing recurrence. Thats some statement! I always knew it was important but hearing a conventional MD say it is very encouraging!
0 -
Well I'm definitely getting some unmistakable hot flashes. It is very strange. Normally I run comfortable to cool, and so to feel like I want to step outside in my t-shirt is definitely different. It's not that unpleasant though, maybe because I often start off cool, and it hasn't been sweaty yet.
I guess it really is a ramp up for the side effects - gotta see what happens as the estrogen levels drop, and drop, and drop.
I really hope I am able to come to a balanced place with this and take it long term. I have a feeling that it will be 10 years minimum when all is said and done with future research and recommendations. I really like the idea of this pill especially because my mother died of MBC (de novo) when she was in early menopause.
I'm happy cosmetically with my breast after lumpectomy (after radiation, we'll see) but the side where the SNB was got messed up by the surgery and scar - like a big pucker instead of a smooth slope. The surgeon said that there's a chance it'll heal and smooth out and I should give it six months after radiation, but if I'm not happy with it she'll pursue a cosmetic surgery consult. I do think it's getting better. The NP said she never had anyone complain about the aesthetics of the SNB before! For me it was more troublesome from the start - had it drained twice and then blood clotting. I think I didn't quite understand what a serious surgery it was. The breast biopsy was so easy, I thought it would be similar. It was frustrating to think that it didn't even have therapeutic value yet might leave permanent damage - though I know it has real and important diagnostic value.
0 -
Hey ghostie13! I am up in the Cities.
What about mood SE of tamoxifen? I feel rather mopey lately but not sure if that is just a natural reaction to having my life upended or a true SE.
0 -
@MLAnne, I've been thinking the same thing about how to tell the difference between Tamoxifen mopey'ness and regular mopey'ness. I've been weepy but it feels to me that it's not very different from what I've felt before starting Tamoxifen at times.
0 -
Hi all! 2 days on Tamoxifen now and here's what I've noticed: I *think* I had a minor hot flash last night. I woke up in the middle of the night and was really warm, so I threw the blanket off of myself and went back to sleep. A while later, I woke up again freezing. But sometimes I run hot then cold anyway, so it may have been nothing.
I also feel like I'm a bit weepier than normal. I cried while watching Christmas Chronicles last night, which is NOT a sad movie. LOL!
Long story short, I may or may not be having side effects. More time is needed to know for sure.
0 -
Hi Salamandra, evily, mlanne and van2018 - thank you for sharing as you start tamoxifen! I guess I will discover what hot flashes are. My husband is used to my moodiness that time of month so... may not be any different for him! 😜
For all of us ladies who have started or are going to start tamoxifen - I received this in a letter from my aunt in Thailand today and wanted to share. She wrote:
“I know less than you who have certainly read a lot about tamoxifen. I only know a few people who has taken this pill, none of them has suffered from it. Khun Ya' friend lived to be a hundred and one after she took this pill for many years.“
(Khun Ya means Grandmother)
Anyways certainly encouraging as we all embark on this journey with tamoxifen!
Hugs and healing to all, tamoxifen or AI or choosing to take neither. Here is a Happy Holidays photo of Domino at the Christmas lights boat parade last night:
0 -
Thank you pebbles for the positive note from your aunt and the pic of adorbs Domino!
0 -
Hello all,
In day 3 after rads I am swollen, very tired, and have the sandpaper skin that others have mentioned. But it's all tolerable. Skin color went from red to pinkish brown.
It is a little weird not going to the hospital for three days, like something's missing.
Son is arriving soon from FL to celebrate Christmas with us. He can do all the work.
0 -
ghostie I had a big lump taken out two years ago (much smaller this time around) and never considered plastic surgery. We wear our scars proudly in my family and my left breast with the shark bite out of it is just another part of my story. Hubs said he kind of likes it. :-)
0 -
Doc also told me the AI would cut my risk by 50%. BUT my risk of recurrence was only 8-9% to begin with. Worth finding out what your risk is without the drugs.
0 -
Wised - You’re very welcome!
Egregious - Enjoy the holidays with your son!
Ingerp - What a great hubs you have! True that my hubby did tell me he still loves me even if I’m lopsided lol. Whew!
Wumberlog - How wonderful for you! With that low of a recurrence rate what are you deciding to do? For better or worse, mine is 20% risk and then the tamoxifen would bring that down to 13% according to onc. Maybe I can knock it down further with diet and exercise. Although radiologists claim that doing rads brings it down to 15% then tamox or AI beyond that could knock it down a few % more so who knows. 8-9% to begin with for you is so enviable
I’m just going to try and stay positive with my aunt’s story about my grandma’s friend who lived to be 101.
To everyone on this thread - HAPPY HOLIDAYS!!!!
0 -
I am glad I found this thread, following. My MO wants me to start an AI in January. I am already on Zoladex since July. Hot flashes are my companions since August.
I went to a baseline BMD scan just before Christmas and - bummer - osteoporosis in my spine. I wonder what my MO will say, she will be very surprised, since I am a very active person.
0 -
Merry Christmas everyone! So glad I logged in so I could see the festive Domino pic! Made my night, I am stuck at work for this holiday.
0 -
I wonder what Domino asked Santa for?
Hi Jboo! I think Zoladex should help with bone strength. I've been on Anastrazole for two months. It aggravated a pre-existing dx of peripheral neuropathy, so I was given Gabapentin. Since I started Gabapentin, my hot blazes, (they were bad), have greatly decreased! I take generic Claritin for bone pain, and that's very minor. (Start the Claritin now) My biggest complaint is joint achiness, which does get better if I exercise. I've think you will do fine!
Dani, hugs sweet sister. With the year you've had, you should have been cut as break today. I hope you're not too busy...
0 -
Pebbles, I love the pics of your dogs so much! I'm actually thinking about getting a small dog and I've always been a big dog person. (Think Doberman) Suggestions?
0 -
Hello All.... I'm glad I discovered this thread! My details are in my signature, but I started generic anastrazole in mid-September, 3+ weeks after my lumpectomy and 2 weeks before the start of my radiation treatments. My MO and RO were both fine with this approach. I haven't had any of the joint pains that can come with anastrazole. My symptoms are all related to the AI suppressing my last traces of estrogen. (I hit menopause 4 yrs or so before my diagnosis.) My skin is drier, so I've had to start using new/different skin care products. I have some thinning of hair in the front, which I am NOT happy about. My husband swears it's not noticeable. The big side effect has been worsening hot flashes. Some have woken me up at night. I struggle with insomnia anyway, and the hot flashes were starting to affect my quality of life. My MO put me on a low dose of Effexor, which is usually prescribed for depression and anxiety. Almost immediately, the hot flashes were fewer and less intense, and I've stopped getting them at night! My tumor was 95% ER+, so I feel grateful to take that anastrazole each morning. The current plan is to take it for 5 years. There's a lot of ongoing research investigating 5 years vs 10 years of an AI- I'll see what develops in the next 4 3/4 years. I did have a DEXA scan this summer, which found mild osteopenia. I'm taking calcium and vitamin D3, and increasing my weight bearing exercise. For the first time in my life, I've joined a gym. I am a couch potato at heart, so this is a huge step for me! I'm trying to focus on overall strength and fitness instead of a particular weight or clothing size- also new for me. Finally, Wised, I vote a big YES on you getting a dog! I have had dogs most of my adult life, and currently have an almost 17 year old Jack Russell terrier named Hector. No matter how crappy my day is, he makes me smile.
0 -
Dani - I'm so glad little Domino brightened your holiday! I'm also working this week so you're not alone. At least should be light traffic, right?
Welcome Jaboo and Green Harbor!
Wised - OMG that would be amazing if you get a small dog! Domino is a Pomeranian and so was Kit Kat and I can say they are a great breed. Some reasons why:
- Incredibly smart and easy to train. When I was in MN if it was super cold and I didn't want to go out to walk them, I didn't have to b/c they are trained to go on pee pads indoors. Out in CA Domino loves her walks but it's a nice to have, not a must have!
- They look high maintenance but are in actuality low maintenance. Fur does not get matted (unlike poodle breeds that get super matted if not maintained). People always think I just groomed Domino every time I walk her when I haven't done a thing.
Also I can just leave a bowl of kibble out all day while I'm at work and Domino and Kit Kat would nibble when they were hungry vs gobble it all up at once (could not do that with the shihtzu I grew up with)
- As you saw from the rads thread, can travel, loves car rides too.
- Incredibly loyal and sweet... although I think all dogs are. Domino is definitely a “pack dog", likes to cuddle up and touch you somehow when she sleeps, happily trots along behind or beside me and my husband and our more alpha dog Tucker on a walk, follows me everywhere (I'm her #1 so she follows me and not my husband) etc.
- The only negative thing you might read about Poms is that they are yappy (bark a lot) and Domino is not yappy at all (and neither was Kit Kat). People are always amazed at that but my belief is that Poms are smart and eager to please, so if you're a good paw mom who knows how to raise dogs, your pom doesn't have to be yappy. I always notice the paw moms with yappy dogs never tell their dog no when they are barking away.
Domino is 12 years and thriving. Our border collie mix Tucker is 16!
Other small dogs - Maltese are hypoallergenic and very laidback. We had an adorable Shihtzu growing up. Some people think Domino is a mini-husky (she's not but a husky or border collie mix that's smaller could be an option too).
Please keep us posted if you get a small dog!
A little more encouragement on the Poms LOL. Domino on Christmas morning (seems she got what she wanted from Santa, treats!).
I just realized this post has nothing to do with hormone therapy but I don't start until January so currently at this nice in-between post rads and pre other treatment.
0 -
Pebbles, Poms have always reminded me of mini Chows. I'm so glad you get a break between treatments!
Hi Greenharbor, I started Anastrozole before rads too. I'm post menopausal and post hysterectomy, and the hot flashes on this drug were legendary. I'm taking Gabapentin and it helps. My tumor was 91-100% ER even being post meno, so I am committed to talking this or a similar drug. We need tshirts that say "My super power is turning androgens into estrogen", lol. I do have a dog, a 60lb. Mixed breed rescue. I'm just enchanted by Domino. Plus, this is my second cancer and third surgery in three years, handling and caring for a big dog is hard during recovery.
0 -
Hi everyone - Just stopping in for a quick minute. Been off the boards for a few days due to the holidays and unfortunately, a family emergency.
Our fam spent most of the weekend in the hospital this weekend with my Mom. She was released Christmas Eve and unfortunately dxd with Congestive Heart Failure...mild and treatable/manageable...but still...ugh Le Sigh.
Hope you are all doing well. Even when I'm not around you are all in my thoughts and wishing you another peaceful day on your unique journey!
Pebbles --- of course Domino made my day! You are such an amazing Paw Mom!
Hugs and healing and merry wishes my friends (aka new family!)
0 -
Spoonie, so sorry your mom had to be hospitalized. So stressful in the first place, but I am sure it being so close to the holiday made it a bit harder. I hope she is doing well now. Hugs to you
0 -
So sorry, Spoonie! Wishing your mom good health.
0 -
Spoonie, wishing your mom has a good recovery. It’s stressful any time of the year, but especially so at the holidays. It’s good to hear from you. I “met” you on the October 2018 radiation treatment thread. I hope you’re healing well. Gentle hugs for you and your mom...
0 -
Spoonie, lots of hugs dear lady. That has to be so scary!
0 -
Adding in to the Spoonie hugs, we're all thinking of you and sending healing thoughts for both you and your mom!
0 -
Spoonie,
Hope you and your mom are doing ok. Rough to be in the hospital over the holidays.
Keep us posted.
0 -
Spoonie, thinking of you and your family. I bet you are a comfort to your mom. (And I bet you are already researching the best outcomes!)
0 -
Hi ladies! Hopping over from the November Radiation Thread - finishing up the last two of 33 rads this weekend after four rounds of Cytoxan/Taxotere in October and a BMX w/ immediate recon in July. I recognize some of the names - Egregious, Spoonie, Wised, PebblesV, and of course Domino!!! Glad to hear we are mostly well - just the remaining redness/peeling/soreness from radiation.
I was hoping to hear more on this thread about declining some of the maintenance treatments. Especially after getting caught up on some of the scary side effects posted on this thread. I am scheduled to start tamoxifen later this month with a possible ovarian suppression or removal, but I am really having second thoughts. I was ER/PR+ (96%), but maintained a pretty healthy lifestyle (the exerciser, organic eater, etc) prior to diagnosis despite my love for weekend indulgences. Anyone leaning towards or already declined some of the maintenance treatments?
Good luck all! Spoonie I hope all is well with your mom.
0 -
Hi lavenderlee! Good to see you here. I was about to reply to your post in our Nov rads thread to link you here lol, glad you found it already.
I think Spoonie is declining tamoxifen. I’ve been back and forth on it but have ultimately resolved to take it mostly because I had positive nodes and did not do chemo due to my oncotype score. Google Suzanne Somers who did surgery and radiation but no chemo and no tamoxifen and is thriving today.
On taking it, I found these threads of people who have had a pretty positive experience with tamoxifen or few side effects just to encourage myself that perhaps I could take this and minimize the SEs. I do hear exercise and organic eating helps so if you do that already you might be OK with few SEs!
Anyways for all of us who have started or are going to start tamoxifen, here are some encouraging links:
“Is there anyone who felt good on tamoxifen” thread:https://community.breastcancer.org/forum/78/topics/867121?page=1
Older thread - “Anyone who had little or no side effects on tamoxifen”: https://community.breastcancer.org/forum/78/topics/747845?page=1#idx_25
“Absolutely no side effects from Tamoxifen” thread: https://community.breastcancer.org/forum/78/topics/843608?page=1#idx_12
I reached out to someone who had few SEs on tamoxifen and is doing great years later. She was nice enough to share with me what she did - she took a few months off to let her body fully recover and started at 10mg, worked her way up to the full 20mg dose.
I spoke to my oncologist and shared her story and he was OK with me waiting until January to start and also starting at 10mg for a month and building up to the 20mg. He doesn’t think it will impact treatment outcome so that’s my plan. Hopefully by easing into it and keeping up the exercise and eating better I can try and minimize the SEs! That’s the plan anyways.
Also found this thread on people who waited to start: https://community.breastcancer.org/forum/78/topics/775158?page=1#idx_15
Whew! Clearly Domino is exhausted from all this research and the long post 😜
0 -
OMG Pebbles if the Pomeranian market heats up in 2019 it will be your fault! What a doggo!
I am taking tamoxifen. From what I can tell, the evidence for its efficacy is just really truly solid, plenty enough to make it worth a try. If SE turn unbearable, I'm open to revisiting. But I felt like it just makes sense to give it a shot. The first month has been all right, some SE but all very bearable. Right now I'm thinking in shorter time periods. My first MO follow up is in March, so my goal is to take it for 3 more months and see how I'm feeling then. My MO was very clear that I should tell her about any bothersome side effects ASAP so that she can work with me on mitigating, and that felt supportive.
0
