Spring 2018 Starting Hormone Blockers

Hi everyone - I haven't checked in in a while. Nice to see everyone doing reasonably well - moving in the direction of better. Veeder, bless your heart - you must have the patience of a saint - not that being angry or churlish would make things better. Flowergal - I love the fortune cookie analogy. Congrats on a good post-bc report.

Last time I was here I had been taken off of anastrozole for a month to see if the dryness SEs would abate. I started tamoxifen on 8/20, and had a little bit of upset stomach and mood shift that fortunately only lasted for a few days (could have been something else? Bad pork belly at that breakfast place?). Anyway, things have calmed down. Veeder, I see you had some stomach issues with tamoxifen, too.

Anyone else? How's things?

Dear friends Simbobby, Veeder, And Flowergal,

I was glad to see all,of you posting, but felt badly for each of you as you take on these nagging issues. And taking them on with courage and grace, Wish there was some way to help you, but know that my prayers are with you.

My issues are small by comparison. Some continued tightness in my left axcilla, and a bit of stiffness in that arm and shoulder (Veeder, broke my left two years ago-a lot of “hardware”, but after PT mostly functional). Still some lingering darker skin, and a couple of hard lumps which are either scar tissue or a shrinking seroma. Hoping to fine tune my exercise program and get some of that area more smooth and less lumpy. No appointments with my breast team doctors until late in the year, so just going to do what I can control (diet and exercise, skin) and hope for good things. No issues with my AI, for which I am most grateful

Again, prayers and support to all of you.

Hi Josie,

Glad you are doing well. My RO said the "tan ' skin was expected and I think, may always be that way.My axilla has been a little sore and tight since surgery but I have been doing daily arm and shoulder exercise for a rotator cuff tear and those seem to help a lot. I think they also are good for lymphedema as the lymph relies on movement to flow.

star2017,

I am nearly 40 years older than you and had a robot assisted laparoscopic vaginal total hysterectomy in June 2018. I was back to normal activities in only a few weeks (2 or 3, I think) and declared totally healed at 9 weeks post surgery(should have been at 6 weeks but first my surgeon was out of town and then I was gone for two weeks so the final check was delayed). My gyn surgeon did say that recovery is even faster with the robot assisted surgery than with a laparoscopic vaginal surgery.

Not certain what your surgeon's concern is but since Tamoxifen has a known association with uterine cancer, you might want to have another discussion with him or her...or have your MO and/or OBGYN have a discussion with the surgeon. The Tamoxifen - uterine cancer association was my motivating factor for the surgery!

If I can answer any questions for you, or help in any way, please let me know either here or by PM.

Flowergal,

Thanks for your good comments regarding both exercise and skin darkness. Mine is blotchy in spots, but I hope it will lighten over time. I don’t go sleeveless or otherwise expose to sun, so hopefully no more damage. And I am going to add back in some of the many exercises that I was taught in physical therapy. I have long standing favorites (like the rowing machine) that I still do consistently, but some others I probably don’t do as often. So rethinking that will be of value.

Wishing all of us continued recovery

Ckat, my first 3-4 weeks of Tamoxifen (I started mid-May) I also kept breaking out in hives, multiple times daily. I scheduled to see my MO to change it, but they stopped, and since then it's been fine. I read that sometimes the additives in certain brands can be what you're reacting to, not the tamoxifen itself, so if there's an issue, maybe you can switch brands. I hope you figure it out soon.

Hi Veeder,

I was thinking about your comment on the bra straps. I wonder if a compression camisole would work. The shoulder strap is wider and you could step into it. I bought one (wearease) but after using it a few times, I think I bought too large a size and it was to late to send back but it was comfortable . I am holding onto it in case I can shrink it and still wear it in the future.

Ckat, I have had patients who also thought they were allergic to a medicine and then changed manufacturers or formulation and the symptoms resolved. Hope this is rhe case for you.

Josie, glad my posts are informative. Any of us that had lymph nodes removed and radiation have a higher risk and, unfortunately, it is something that can occur years later. Hope you don't get it!

Veeder,

Good to see a post from you! And very happy for the reconnect on the left clavicle! And I think it’s fair to try your regular activities and see what you can do vs. the pain level you experience. Had it not been for the cancer, my personal sense is that your body could have healed your shoulders more easily. Although I had a bad set of fractures, that was the only health issue I had to manage at the time. Given what I subsequently managed with my own cancer, I give you full credit for balancing these two big challenges the way that you have.

What stands out to me from your comments is that your MO is now listening and offering suggestions to the issues you have raised. I’m sorry that I cannot offer any personal experience on these possible drug applications. I experienced full menopause in my early 40s (over 20 years ago) and my breast cancer is highly estrogen positive, so my treatment post-surgery was pretty clear.

But I hope that both this big support group here, as well as the formalclinical literature will offer you more information. Keep searching and see if you can identify any studies where these drugs have been used. Also make sure any questions you have about safety/side effects are answered to your comfort.

And that pesky seroma! You’ve demonstrated a lot of patience with that as well. Sending up a prayer that the end of that is in sight (my own seroma is right at the lymph node incision, and not painful unless I press it. But waiting until I see my surgeon again before I raise the issue of draining it)

It’s always sumpin’ isn’t it?

Veeder, sending you a big, but gentle hug of support.

Hello ladies,

Happy Fall- It is rainy but cool here in Memphis and I am looking forward to working out in the yard without all the heat and humidity.

Veeder, Glad you are on the mend and hope it continues that way. Will you be seeing someone who can definitely decide if you have lymphedema? If it is , you want to get treatment so to break up the fibrotic tissues so you can start stimulating the lymph glands.This is what all my PT and home exercises are all about. Can you ask to see a lymphedema specialist? ( usually a Pt who had been trained by the Norton school and/or LANA certified.

I had my last Pt this week and my therapist said i was one of the most improved breast LE patients she has had, so that is encouraging. I do have a follow up visit in a month . I will probably have to wear a compression bra from now on and do my "boob' exercises 2x day as well. I am very motivated as I do not want it to affect my arm which so far is normal.

I was also told the hardness under my incision scar is a seroma but if they drained it, it would just come back and it should get smaller in time. It doesn't hurt and I just thought the hardness was normal.

Beaverntx -Glad the med is working and hope it was the change in manufacturer that did the trick.

Josie- Hi and hope the seroma resolves. I have read that this is quite common and most do improve in time with out treatment.

flowergal,

Thanks for your comments on the seroma. I am going to wait a bit, ask at my next appointment, and hope that it does get smaller in time.

MANY THANKS for all the good comments about lymphedema. You have certainly raised my awareness. You have become a very good info resource

Continued good health to all of you wonderful,ladies, and Happy Fall.

Veeder,

As I read your last post a thought came to me- do you currently belong or do you have something like a Planet Fitness close to your home?

I was thinking about you gingerly riding out on your bike, and I was holding my breath a bit, hoping you did not fall or otherwise hurt yourself.

I belong to Planet Fitness-joined after I had finished my physical therapy from my shoulder fractures. I knew from my therapist the exercises he wanted me to continue. Some required no equipment, and some used inexpensive equipment that I had bought to use at home. So these two groups of exercises I continued on my own at home.

But then there were exercises like the rowing machine, which helped a lot but which I could not replicate at home. So I went on a tour and even obtained some free guest passes to work out at many of the local clubs. I decided on and joined PF because 1) they had the equipment I wanted to use, 2) I didn’t want amenities like a lap pool or a sauna, 3) it is close to home 4) impeccably clean 5) open 24/7, 6) and inexpensive

I use the treadmill as my primary cardio but a number of people use the recumbent bicycles. Safe, not affected by weather, and traceable results. (Watching tv while exercising isn’t bad either!

I’ve met other cancer patients there who could not afford the co-pay on the physical therapy portion of their health insurance, but could cover the monthly PF.

It was a godsend when I had my radiation therapy. I stopped there every day after my treatment and did my workout. I and my doctors credit the exercise for getting through radiation without feeling fatigued.

(This is not a commercial endorsement of PF, but my own experience)

Continued support and gentle hugs, Veeder.