Starting/declining hormone therapy Nov, Dec, Jan 2018
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Pebbles, I had 2 positive nodes (micromets) and was staged 2A also. This was 7 years ago, so staging criteria might have changed. Your poms are absolutely adorable! My pommie baby is pictured above my screen name. Here's a more recent picture of little Pansy.
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hapa, great new so far on the lack of SE ! I really hope it continues. My pec muscle has been pretty tight with rads too I will be curious how long it takes after finishing to feel "normal" I am aware 24/7 that this mastectomy side is there if that makes sense. I hope everyone has a safe and happy New Year's !
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Happy New Year everyone! Wishing us all good health in 2019.
Oya80 - that’s awesome that you updated your staging to the new guidelines. Is there a good link to view the new staging? Maybe I will update mine too!
Wanderweg - Please keep us posted what your MO says re: dose for tamoxifen. And yes I’m being careful about sources, usually trying to find the actual study vs opinion without back-up.
Lavenderlee - SOooo happy for you being done with rads and ringing the bell!
Wised - thank you! Fingers crossed! More Domino below!
Pupmom - Little Pansy is adorable!! I’ve seen you in some other threads and it always puts a smile on my face that there’s another pom mom here. They are the best aren’t they? Domino has been my little support dog too and came with me every day to radiation treatment, it’s what started the trend of me posting the pup pics because she was so cute coming along!
Thx for letting me know re: staging. My stats look very similar to yours. May I ask what your treatment plan was? SOooo wonderful to hear you are 7 years out!! This is really encouraging for me.
Here’s a happy new year photo from our full “paw family”!
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Awwww, Pebbles, your doggies are just so darling!
So, my treatment plan was pretty standard. Surgery, anti-hormonals, and I did get reconstruction on lumpectomy breast, and a lift, reduction on the other side. Never needed chemo fortunately.
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Pupmom and pebbles! I'm starting to dream about Poms!
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Dani - I had BMX and the non cancer side feels like nothing ever happened to it, but the cancer side just feels not right. Like you said, I am aware of it all the time for some reason or another.
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Wised, I highly recommend those little munchkins!
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Pebbles - I don’t see my MO until the beginning of February, but I will definitely let you know what he says.
Hapa - Do you think the cancer side feels different because of the rads? I had a BMX and my non cancer side feels a little weirder.
Wishing all a happy!healthier NewYear!
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Dani, hapa and wanderweg.... FWIW, my surgeon said that rads can make the muscles shrink. I’m 2 months out from the end of rads, and have been feeling a lot of tightness- more in my armpit and under my breast. I’m doing some gentle stretches every day (well... almost every day) and I do think they help.
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I have nothing productive to add re: the topic on tightness post rads (wish I did but I’m 3 weeks out yet and don't feel it) BUT I am chiming in on this super important topic of 2019 which is Wised getting a pomeranian. I second pupmom's recommendation!
Domino wanted to show Wised (and salamandra too) that Poms look good from any angle, so she jumped up here of her own accord
Wishing all of us a happy and healthy and hopefully smooth 2019 as we navigate the waters of hormone therapy (or refusing it) next.
(PS pupmom thank you for sharing what you did - my stats are similar to yours and so is my plan so it's really really encouraging that you are 7 years out and didn't do chemo)
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Hahaha, Domino is so clever, and cute!
About the lack of chemo, it was due to my low OncotypeDX score of 14. Have you had that test yet Pebbles?
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Yep, that’s definitely super important 😁. Wised, I say go for it! Then post all the pictures and I can live vicariously through the posts. I would definitely have more dogs if I had the time and money! Domino is certainly striking a convincing pose there!
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Domino! Your cuteness is too much! The rest of you are a horrible influence!
Happy 2019
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Hi everyone - wow this post has been busy!!!!! And of course, Domino brightens up the entire thing. And yes, Wised, we are all a horrible influence....now go get a Pom to play with Callopie!
Wishing everyone a wonderfully healthy and kind 2019! 
Thanks for all the hugs and positive thoughts for my family, and my mom.
She's doing well and is seeing her primary doc this week. She'll start a couple of drugs to manage blood pressure and help her heart function as effectively as it can with her new dx of Congestive Heart Failure. Thankfully, it's early stages so we will have to see what comes next and till then stay as positive as we can. AGain thank for all the support. Means a ton.
As to me, I've been off the boards for awhile. I'm really struggling. This darn breast Lymphedema and radiation Fibrosis have been awful. So painful. Can barely lift my left arm due to the tightness of muscle and pain. Feels like my armpit will rip apart from my chest most of the time. Even doing all the at home PT and lymphatic manual drainage I can, it's just not enough. Hoping my Cancer Rehab PT angel can work wonders and figure out something to help more this week. Sort of feels like I'm drowning in side effects and pain....Le Sigh.
On top of that, am just exhausted. Have had 3 dr or specialist appts a week for the last 2 weeks and will have the same for the rest of jauary basically. Will see Rheum this week to figure out what the heck is up with my Bone Scan, the broken rib, and if my arthritis, is now in my jaw!! or what?!!. Then I see Neuro next week to figure out where some of these new symptoms are coming from and rule out that the lesions in my brain haven't grown or spread. After that it's off to Derma to continue to work on the damage Rads did to my skin, sweat glands, and so on.
Sometimes being a Spoonie is more than rough, it's just downright hellish and adding cancer into that mix has been challenging to say the least. Oh well, keep on truckin' right? <eye roll + smirk>
Somewhere in here I need to start my DIM in place of the Tamoxifen.....who knows when I'll feel sane enough to add that in?! Feel like I need to stabilize before I throw in another possible grenade.
Anyway, wish me luck ya'll and sorry if I'm not on as much as I was before. I just have to conserve my spoons for awhile until things let up.
Hang in there everyone and I'm cheering us all on from snowy and blustery cold MN.
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hapa, good to see a fellow 3+ here... I am to start an AI soon. I am on Zoladex since July. May I ask why anastazole for you? I saw many triple positives take Tamoxifen...
And I have osteoporosis (found out just before christmas). I wo der what my MO says concerning an AI with osteoporosis
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Had two hot flashes last night, so it seems my luck might have run out. Then again, I forgot to take my anastrozole until around 8pm so maybe that's why...
Jaboo - I'm doing the AI/zoladex combo because I had originally been diagnosed HER2- and that was part of my neoadjuvant treatment. I was on it for three months with no real issues besides hot flashes. When I discussed endocrine treatment with my MO after radiation, he mentioned tamoxifen, and said I could also do AIs if I was determined to be postmenopausal. I asked why I couldn't do the zoladex and AI again if I was still premenopausal since I had already done it and didn't seem to have issues, and he said that was actually shown to be more effective than tamoxifen. So that's what I'm doing. I wasn't exactly excited about tamoxifen due to the risk of blood clots. I'm a little worried about the osteoporosis but I'm a runner and will add some resistance training to my routine in the hopes of avoiding it. I'm also taking vitamin D, though I'm not sure it does anything for me.
Does anybody know how bad it is to take an extra anastrozole pill? I seem to forget I took mine and then end up taking it again. Or at least that is my assumption since my 30 day pill supply never seems to last 30 days. I started counting them when I opened the bottle so its not like the pharmacy is shortchanging me.
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Hapa, one time years ago I took an extra Aromasin. Called my doc and she said no problem. Don't know if that applies to your med though.
The way I keep track of my daily pills now is to turn the bottle upside down after I take the med. It is hard to keep track of all the meds and vitamins.
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hapa, thanks so much for responding! my MO told me the same - that AI seem to be more effective in pre-menopausal women than Tamoxifen. But she doesn't know about my osteoporosis yet and I guess she will be very surprised since I am a very active person. I am glad to hear you were taking an AI for some months without any issues! that gives me hope
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spoonie - So sorry you are struggling physically. I hope the PT will help loosen you up some. I'm interested in hearing more about the DIM - looked it up after I saw your mention of it. Is it prescribed by your MO or something you take OTC? I know cruciferous vegetables are pushed for BC patients and I've been trying to find ways to work them in every day.
JaBoo and hapa - My MO also said that AIs are more effective for postmenopausal women but said the difference for me would be so small that it's not worth the bone loss (I already have osteopenia). I also take vitamin D.
I bought one of those daily pill boxes, with am and pm compartments. Vitamins and baby aspirin in the morning side, tamoxifen and melatonin in the evening side. AND I have an alarm set on my phone to remind me at 7pm every day to take the tamoxifen. I'd never be able to keep track of whether I'd taken my meds without that pill box.
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Oh Spoonie, you have so much to deal with. Just keeping track of all the appointments would be exhausting. I am happy that your care team is really trying to figure everything out though. Hopefully, you will get relief, good reports and a bit of a break from trips to the hospital. And also, a good night's sleep! Sending warm thoughts from NH where it was actually in the 40s today.
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I just looked up DIM too. I thought it was an abbreviation and maybe meant "Doing It Myself" (herbs, vitamins, supplements, diet and other lifestyle changes, etc.) as an alternative to hormone therapy!! I had never heard of it before.
I just watched a DVD by Joel Fuhrman, MD and he mentioned that mushrooms are an aromatase inhibitor.
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Thanks Wander and LPL - I'm hoping for better days ahead. Never give up, just keep fighting. I'm used to it! LOL.
As to the rest, about DIM....Yep DIM stands for "3-3′-diindolylmethane" ... a element found in cruciferous which has been shown to have cancer inhibitive properties.
My homeoptath and Infectious Disease crew definitely are on board with this treatment. And I guess if it fails, well it can't make things worse. And yes, LPLibraryGirl, it does act as an inhibitor to forms of estrogen, so like Reshi Mushrooms (which I also take), they act to hopefully prevent recurrence. Fingers crossed.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5059820/
Abstract
"Diet is a modifiable factor associated with the risk of several cancers, with convincing evidence showing a link between diet and breast cancer. The role of bioactive compounds of food origin, including those found in cruciferous vegetables, is an active area of research in cancer chemoprevention. This review focuses on 3,3′-diindolylmethane (DIM), the major bioactive indole in crucifers. Research of the cancer-preventive activity of DIM has yielded basic mechanistic, animal, and human trial data. Further, this body of evidence is largely supported by observational studies. Bioactive DIM has demonstrated chemopreventive activity in all stages of breast cancer carcinogenesis. This review describes current evidence related to the metabolism and mechanisms of DIM involved in the prevention of breast cancer. Importantly, this review also focuses on current evidence from human observational and intervention trials that have contributed to a greater understanding of exposure estimates that will inform recommendations for DIM intake."
Table 3 Completed and ongoing clinical trials
Testing the efficacy of diindolylmethane in breast cancer prevention...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5059820/table/nuw010-T3/?report=objectonly
CONCLUSION
"DIM and its precursor I3C are among the most commonly evaluated indoles found in cruciferous vegetables. These compounds have been widely studied in relation to breast cancer chemoprevention.87Numerous mechanisms by which dietary exposure to these compounds may modulate breast cancer have been reported, including apoptosis, modulation of response to oxidative stress, estrogen metabolism, and cell cycle modulation, and other antiproliferative activities have been evaluated, largely in cell culture and animal studies.24,30 The evidence for a protective role of DIM against breast cancer continues to grow, but additional research is needed to further identify and refine the mechanistic targets of this compound, particularly in humans. DIM is available to consumers in a generic crystalline formulation (low bioavailability) and in a microencapsulated form as BR-DIM (higher bioavailability). Patient inquiries regarding the possible use of DIM as protective or adjuvant therapy during chemotherapy are mounting, in part because of the increasing availability of and information on DIM. Nevertheless, information about the specific dosing of DIM and the corresponding intakes of cruciferous vegetables is currently lacking. Before any recommendations can be developed, clinical trials must be completed to determine the evidence-driven basis for a dietary recommendation."
Also, if you go to https://www.mskcc.org/cancer-care/integrative-medicine/herbs/diindolylmethane#references-1 and scroll down to "References" there are I think 30 some studies that are listed about the effects of DIM on various cancers, types of cells, hormones, and even a new study on BC patients on tamoxifen that also took DIM. Those studies are worth the read IMO.
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Aww Domino, yep, every angle works!
Spoonie, I'm so sorry about everything you're dealing with
I'm starting to feel a lot of anxiety about going back to work in a week and a half. I liked my job before all this started, but then it felt so overwhelming. During this time off, being able to focus on one thing at a time, or not focus at all for hours, to not be responsible, it's been so so good. I'm worried I won't be able to handle the work, will be miserable, mess it up, etc. I don't think that's true... but it feels true. Agh!!! I actually feel calmer thinking about cancer than thinking about work. Is that messed up or what??
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Spoonie, hello my fellow cording/lymphedema sufferer! I hate both with the burning passion. My right arm is swollen and painful and thickly bandaged. It’s a major hindrance, to say the least, as I am right handed. Have PT tomorrow.
Pebbles, pupmom, I want you to know that I started working on my family about getting a Pom. These pictures are too darn cute. How bad do they shed, though
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Happy New Year Everyone!
I started taking letrozole yesterday. Fingers crossed that I can tolerate it. Today I start back to work full-time after working part-time during radiation. Kind of nice to start on a Wednesday and have only a 3 day week before another weekend.
Wised-hoping your side effects get better fast for you. My husband had to take gabapentin for a while, too.
Pebbles and Pupmom-love all of your dog photos! I have a 98 pound lab/golden mix and a smaller spaniel mix that helped me through the daily walks during radiation. Hoping that side effects from letrozole don't impact that for me.
Sugarmaple and Diagnosis Disrupted-So sorry that you had those side effects and thank you so much for sharing with us.
LPlibraryg-Congrats on finishing radiation! Nice to see that you taught first grade. That is one grade I have never taught.I am a worrier, too, about how this pill is going to impact daily living.
AliceBastab and Dani 444-Good luck with starting Tamoxifen.
Being Positive-I hope Femara is going well. Fingers crossed for you.
Ghostie13-Let's hope we can doge the side effects of letrozole.
Lavenderlee-congrats on ringing the bell! No better sound! (except maybe the sound of all of us throwing away the empty prescription bottle for our last hormone therapy pill day years from now!!!)
I am grateful to be able to come on here and read about how everyone is doing and support each other. I have gotten so much information from all of you. Thank you so much!!
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InnaB, Poms do shed some. It's not bad if you brush them. Plus, they are so small that there's not a lot to shed. They also should go to the groomer routinely. Pansy goes once a month.
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Hi everyone...just want to add that I have been taking DIM in leu of an aromatase inhibitor for almost 3 years. So far so good since I am NED. I'm not advocating it for anyone but myself. Good luck navigating this complicated disease.
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Hi all, I'm checking back in in preparation for taking that first tamoxifen pill in a couple of weeks. I had my last radiation two days ago and am waiting to be a bit more healed before starting a whole new set of aggravations. I'm trying to think positive. My mind is one that can make mountains out of molehills, which means that if I go in expecting a lot of hot flashes etc I will not only experience them but also believe I'm having one every time I step into a warm building from the cold January outdoors. My goal was to get back in shape and begin a healthy eating plan before starting, but between the holidays, the outdoor weather, and the number of wonderful people in my life who kept insisting on bringing me delicious high-carb cheesy meals during my radiation treatments, that just hasn't happened. I'm telling myself that the love and concern of others has to be at least as medicinal an ingredient as broccoli would have been.
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I plan to start the Letrozole on Monday.......picked up the pills on Saturday. Just so not thrilled with this treatment but I guess I will see how it goes....
The fatigue is improving quite a bit. Had it hit me out of the blue yesterday but curling up on the couch and closing my eyes for 20 minutes took care of that.....
Christmas decorations are down and ready to be put away. Life is getting back to normal, except for a very occasional panicky feeling.....usually comes from thinking about med side effects and wondering if there just isn't some other way....
I have an appointment next month with a gynecologist, a woman about my age, to get an opinion from a little different perspective.....hopefully that helps.....
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Ghostie13 I started the letrozole 2 days ago. Wondering how long it takes before SE kick in. Also has anyone tried taking supplements ahead of getting side effects? I bought one based on what I have read on here (glucosamine, chondroitin, and MSM in a tablet). Not sure if I should wait to see if I need it before adding another pill into the mix. Is anyone else taking supplements?
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