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Starting Chemo in November 2017

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Comments

  • rljes
    rljes Member Posts: 499
    edited March 2019

    Thx Star - I had a hysterectomy so I hope I'm good to go on Tamoxifen.  Everybody has diff SE's.  (crazy, isn't it? ) Good luck to us both! 

  • mkn86
    mkn86 Member Posts: 129
    edited May 2019

    Hi ladies... just checking in. congrats Meowmmy and rljes for finishing up on a few more treatments :)

    things have been a rollercoaster for me after radiation finished last May 2018. much harder to bounce back to “normal life” after. but i haven’t quit just yet. hitting 2 years since diagnosis in August.

    Was not able to travel on foreign assignment again after. seeing a therapist still for this whole ordeal.

    hugs to all


  • star2017
    star2017 Member Posts: 370
    edited May 2019

    I’m sorry you’ve had a rough time, kat.


    I’m beginning to feel pretty normal, or as much as I can. Finished chemo March 2018, then completed rads July 2018. Completed my exchange and prophylactic surgeries October 2018. Menopause hasn’t been terrible, but I do feel a little different.


    Still haven’t done my nipple recon. Can’t decide if I want to do reconstruction or a 3d tattoo.


    Started going to the gym.


  • magari
    magari Member Posts: 335
    edited June 2019

    Hi, all -

    Just checking in with an update. I will be having revision surgery to exchange my implants next month. I had direct to implant, pre-pectoral surgery in October of 2017, with 6 rounds of chemo afterward. My current implants are shaped textured, but Sientra brand, as opposed to the Allegans that have been so much in the news lately.

    I'd attributed the bubble that was between the implant and the skin on my right breast to delayed healing or absorption of the Alloderm as a result of the chemo. But over the past few months it seemed to be getting larger, and a similar one starting to develop on the left. There was also rippling that hadn't been there initially. When I went in to see my breast surgeon for my annual checkup, she didn't think any of this was cause for concern re lymphoma, but she also didn't think it could be corrected non-surgically. So we agreed that my existing implants will be removed and switched to smooth round ones. I'm going to have some fat grafting done at the same time, mostly to fill in the dents that are where my ports used to be.

    Although I am not thrilled at the idea of another surgery, I will be relieved to have these issues addressed, with lab tests to check things out. And start fresh with new implants that my body will hopefully like better!

  • Blair2
    Blair2 Member Posts: 353
    edited June 2019

    Hi Margari - so nice to hear from our old group now and then to see how everyone is doing. I just checked in since a month ago and saw you just posted. Sorry to hear your implants were not the best or causing a bubble reaction. Reconstruction has to be difficult to perfect. It sounds like your plastic surgeon is going to try and make it better with a different kind. Best of luck with your surgery. When is your surgery?

    My lumpectomy was pretty bad. The nipples are still not evenly matched, and the corrective surgery only got rid of the pointiness I had on the cancer side. That was good, but he made my good side a bit too small. I need to wear a padded bra to make them even as the unpadded bras gap on the smaller side. Now I wish he hadn't touched it. I guess I'll just be deformed for the rest of my life. If I were younger, I'd be really mad. Medicare won't cover anymore surgery for sure and I'm too tired to face more surgery. The only excuse I get is “at least you're alive". Well that's true, but it's still sloppy surgery. I can't understand why after the complaints I made about the nipples being an inch off that he couldn't have tucked the droopy one up higher by tucking the skin. He just didn't place it right originally. I also have a huge hard two inch lump on the cancer side that is scar tissue and it's very sensitive. Oh well, I just try to forget this mess. My mammograms are at least clear.

    Other than that, I see my oncologist next month and I think I'm having joint pain from the letrozole. However, I have osteoarthritis in my hands, knees, ankles and feet. Maybe it's just getting worse

  • rljes
    rljes Member Posts: 499
    edited June 2019

    Hi Everyone - its good to see a 'familiar face' - smile.

  • star2017
    star2017 Member Posts: 370
    edited June 2019

    I saw my breast surgeon today. All good and moving to once a year visits.

    I’ll be switching from tamoxifen to an AI tomorrow. Little nervous

  • rljes
    rljes Member Posts: 499
    edited June 2019

    Hey Star2017, just remember everybody reacts differently to meds. I'm nervous to re-try Tamoxifen - going for July 1st start time at 5mg. Arimidex gave me hives. best of luck!

  • star2017
    star2017 Member Posts: 370
    edited June 2019

    Thanks, rljes! I chickened out today because I had a busy day, but will do it tomorrow (only have one more tamoxifen pill left anyway, so it's going to have to be soon). I had hives for the first three weeks on Tamoxifen, but they stopped after that. Let's see what happens.

  • magari
    magari Member Posts: 335
    edited June 2019

    My revision surgery is scheduled for mid July. I'm having it at the surgery center rather than the hospital, and my surgeon says it will only take a couple of hours, with no drains needed. Bandages come off a week after, at which point I should be ready to return to work.

    Blair - My surgeon says that reconstruction is covered by insurance for the rest of your life. So if you're not happy with yours, at least have a consultation with a different surgeon!

    I'm 55 and didn't have the achiness and joint stiffness I now have prior to starting Arimidex. (It's worst in the morning.) Am taking Effexor 37.5 mg and Cloniden to reduce the hot flashes, which I did have, but not as often or as intensely. Overall I'm managing the SE fairly well.

  • Blair2
    Blair2 Member Posts: 353
    edited June 2019

    Hi Rljes, and Hello Star - good to hear from you! Star, tamoxifen gave me vertigo for several days. I couldn’t take it so i was switched to letrozole which is ok with maybe the exception of joint pain.

    Good luck Magari with your surgery in July. I’m under Medicare which makes you pay 20% of surgery unless you have capped out on your out of pocket co pays. So I doubt I’d be covered 100%. I don’t qualify for supplemental insurance because of having heart disease, and now cancer disease here in FL. So I’m stuck with an advantage plan that doesn’t have a premium, which is nice, but it doesn’t cover all treatments or surgical costs. It’s a bummer


  • star2017
    star2017 Member Posts: 370
    edited June 2019

    Thanks, all! I started the AI (arimidex) and so far so good. It doesn't feel different from the tamoxifen, for now.

  • rljes
    rljes Member Posts: 499
    edited June 2019

    Hi Blair!

    Magari - how is Cloniden working for your Hot Flashes? My OBGYN suggested that to me but it interacts with too many of my medications. She then suggested Paxll I'm trying it tonight.

    Somebody needs to start a thread just on HOT FLASHES & how to reduce them! Mine are unbearable. I just got most of my hair cut off today so I can run my head under the cold faucet.

  • star2017
    star2017 Member Posts: 370
    edited June 2019

    my hot flashes are persistent but not terrible. Usually a glass of ice water does the trick, along with a fan on high. Oh and the AC on blast. Bearable, but I definitely feel uncomfortable.


  • magari
    magari Member Posts: 335
    edited June 2019

    Hi, all -

    The Cloniden alone wasn't cutting it for my hot flashes. I'm back on Effexor 37.5 mg (which is time release) along with it. Although I have a bit of intestinal gas, it's much better than the first time around, when the bloating was actually painful.

    With both of these meds, I still have a few hot flashes per day. But they are fewer and less intense than without.

    Got my pre-op instructions today for the revision surgery I have scheduled for July 18. I'll be relieved to get that over with. My surgeon says she doesn't think there's anything to be concerned about from a health perspective, but I can't help but worry a little about the fact that there are noticeable changes to the bubbles between my skin and the implants. I

    I'm also hoping for an improved cosmetic result, since I currently have "divots" where my ports used to be and another dent that's discolored where I have an adhesion that will be corrected.


  • Meowmmy65
    Meowmmy65 Member Posts: 125
    edited August 2019

    Hi Ladies! Here is a not fun update from me:

    I did testing a year and a half ago and had 3 VUS - 2 on the ATM gene. I had a lumpectomy, chemo, and radiation. This week, I was notified that one of the ATM VUS is now upgraded to clinically significant with a high cancer risk. Yup. I'm now higher risk for recurrence and at risk for pancreatic. That's a little scary.

    Now, my 2 daughters, 5 siblings, and mom are getting genetic testing so that we can determine who else might have this and which line it came from. Dad died from bone cancer in 1985, so we can't test him.

    So, I'm officially a mutant. Why can't I have a cool mutation, like Elasta-girl? Getting cancer is not a fun super-power.

    A more aggressive monitoring schedule is now in the works, with a mammagram and breast mri annually.

  • star2017
    star2017 Member Posts: 370
    edited August 2019

    so sorry to hear that, meowmmy. I hope the knowledge comes with better options and careto stay healthy.

  • orangedaisy
    orangedaisy Member Posts: 129
    edited August 2019

    Hi all. Meowmmy so sorry to hear they upgraded your mutation. I’m a BRCA2 mutant. I’m headed over to the AI board to see if they have any suggestions for discomfort in the vaginal/vulva area. Some days it is unbearable. I use Reveree recommended by my Onc, but I think it makes it worse. Other side effects are minimal.

    My double mastectomy reconstruction needs a revision. My cancer side is lower/droopier, but I’ve had 2 additional surgeries already because of infection/non-integration of the dermal matrix. I’m tired of surgery.

  • magari
    magari Member Posts: 335
    edited August 2019

    Hi, all.

    Meowmmy, I too am sorry to hear your news about the mutation upgrade. Agree that a super power would be a lot more fun.

    Orangedaisy, I'm sad to hear about your struggles as well. I feel you re the lack of desire for more surgeries, and hope that you are finally able to get a reconstruction result that you're happy with.

    Re your vaginal discomfort, here's the thread you'll probably find most helpful https://community.breastcancer.org/forum/150/topics/69566?page=140#idx_4185 I've been using only moisturizing body wash (rather than soap) in the shower and coconut oil afterwards. Both have helped me somewhat. The larger issue in my case is that I have much more desire in theory than in actual practice. I just switched from Arimidex to Aromasin and will be interested to see if that has any impact on this aspect of things.

    I am now about 3 weeks out from my own revision surgery. My surgeon thinks that the bubbles and ripples I had were a result of the Alloderm rubbing against the textured surface of my implants (which were not Allergan, but a similar type from Sientra.) She found no fluid, just air pockets. But in any case, they were causing me discomfort, and didn't look or feel right.

    Despite the fact that there's still a little bruising and swelling, I feel better than I did pre-surgery. I think there was inflammation associated with the air pockets, and my body was using energy to deal with that. The smooth round implants look more natural than I expected - perhaps because I asked that they be fairly small. And the fat grafting also helps, I am sure. I have some nodules in the area where one of my ports was that are causing a little pulling, and will be massaging there to try to break them up. Overall, I am happy with my results - both cosmetically and in terms of how much better I feel.

    Still using the Clonidine patches and taking 37.5 mg of Effexor to reduce, but not eliminate, my hot flashes. I tried moving the patch from the side of my ribcage to my upper buttocks, but that resulted in significant skin irritation, similar to a bad sunburn. This is another SE that I'm hoping may improve with the Aromasin. The primary reason for the switch was that the plantar fasciitis and achilles tendonitis I had several years ago (which had completely resolved before my diagnosis) decided to return over the last couple of months on Arimidex. I could deal with it during the day, but my feet were starting to burn at night to an extent that made it difficult to fall asleep. So my MO suggested we try something else. I'm hopeful that it will be a better option for me.

    Best to everyone!


  • orangedaisy
    orangedaisy Member Posts: 129
    edited August 2019

    Magari, I’ve switched to an intimate wash for women over 50. I’ll read the thread for sure. Funny you mentioned switching AIs because of plantar fasciitis and tendinitis. Suddenly I have issues with tendinitis in my left foot. It’s always been more susceptible if I overwork it because it has no arch, but I haven’t overworked it. Rest hasn’t helped. Compression helps some, but it won’t clear up. Was yours only on one side?I’ve read AI side effects are usually bilateral, so don’t know if my onc will believe the AI is the culprit.

  • magari
    magari Member Posts: 335
    edited September 2019

    Orangedaisy - My pre cancer plantar fasciitis and tendonitis was bilateral, and it has come back on both sides since starting AIs. Seems minimally better, but not gone, on the Aromasin versus Arimidex. I am back to wearing my orthotics as much as possible, and only shoes with arch support at all times.

    Hot flashes seem about the same - possibly fewer, but more intense? Not sure if that's a good thing or not. I need to be better about logging my SEs so I can quantify them for my next visit to my MO.

    Massage does appear to be helping to break up the scar tissue in my port area. I may need to do some to my breasts themselves, as it seems like some adhesions may be forming. I've e-mailed my surgeon about this, since I want to get on it as soon as possible and I'm not scheduled to see her for about 3 weeks.

    Best to all!

  • star2017
    star2017 Member Posts: 370
    edited September 2019

    My hot flashes did not start with tamoxifen, but a few months in, when I had my ovaries removed. I found my hot flashes have gone down since I started the Anastrozole. I may still get them, but they are not as obvious.

    Lately I've noticed more aching tenderness near my port scar and near my incisions for the ovary removal. I guess I should follow up with the doctors, though it's nice to have had a bit of a break from all the check ups.

    I was able to keep the nipple on my prophylactic side and the docs had talked about using the existing one to reconstruct the missing one. However, I was hesitant to affect the one part of my breast that still felt whole. Now though I have found that the sensation I get is actually kind of uncomfortable, and I am considering going for the reconstruction.

  • orangedaisy
    orangedaisy Member Posts: 129
    edited March 2022

    Hi everyone. Took me a minute to get logged into the "new look" of the site. I see it's been since 2019 that anyone posted. I hope you are all doing well. We are coming up on 5 years this year. This was the most awesome group during chemo. You helped me know my issues were real and kept me sane.

  • star2017
    star2017 Member Posts: 370
    edited March 2022

    Hi orangedaisy, nice to hear from you! As you can see from my signature, we discovered bone metastasis last year (hip, sacrum, and a couple months ago, femur too). 2 rounds of radiation, some new pills. I hope it's working.