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  • tessu
    tessu Member Posts: 1,294

    4 months pfc my brain feels more like "me" again; still fighting memory issues, but the overwhelming anxiety and mood swings that I believe were some kind of chemical reaction from chemo (because I also had skin and breathing symptoms) have finally gone away. The tinnitus in my left ear I'll just have to learn to live with.

    I'm no longer stressing so much that the surgeon refused to remove my other (noninvolved) breast. Now that my brain has cleared, I've been able to read about prophylactic mastectomies, and learned that they don't always prolong life after all. Also, there are several women in this country's secret FB group for bc patients who did have the surgery, but got a recurrance in the tiny amount of cells left behind. My body reacts badly to general anesthesia anyway, so I'm overall glad to not be facing any more ops in the near future (I hope).

    I finally bit the bullet and visited the breast surgery physical therapist again, for advice on how to restart the post-op exercises I quit these past few months because they hurt. She was surprisingly understanding, and wrote out a gentler start-up routine to help regain shoulder range of motion and soften the scar tissue, with a phone control in two weeks. Didn't yell that I had given up, said a lot of patients get discouraged.

    I am making new friends through the local breast cancer group, which meets for coffee/tea downtown once every two weeks. Also enjoying checking out this town's surprisingly many cafes; never used to go, bc "alone"...

    Every day I try to find at least one positive, and every week I try to do one new or cool thing I wouldn't usually have done, because every day without chemo feels like borrowed time (Herceptin, which goes until mid-October, doesn't count because it doesn't need an iv). Last truly new experience for this city girl was 3 hours in a sheep barn last Sunday helping with baby sheep nail clipping (I just had to spray paint red dots on their foreheads when they were done, and keep the rest of the babies out of the way while my friends did the rough work). Baby sheep are adorable!

    Without this group and the wealth of information on this site, I doubt I'd be here today. Getting cancer and dealing with surgery and its complications, and the utter hell of chemo, would have been too much for me to handle on my own. To everyone here: thank you


  • fidget
    fidget Member Posts: 92

    tessu, it warms my heart that you are getting out and having such a positive attitude. This has been such a long road for us all and at times just seems never ending. I think reading your post has given me the boost I need right now. I finished 28 whole breast radiation treatments along with 5 boosts a week ago Friday. I sailed through until the last week when my skin started breaking down. Never expected the bad moist desquamation under my arm and on the side of my breast. It is so bad that I've been stuck in my house for a week. Hopefully I'll turn the corner soon. Thanks again to everyone on the boards, and I hope all is well with everyone.

  • tessu
    tessu Member Posts: 1,294

    fidget, I hope your skin breakdown heals fast. That sounds so painful. :(

  • cajunqueen15
    cajunqueen15 Member Posts: 689

    hi lovely ladies!!!

    Can't wait to read all of this and catch up. Sending much love to you all. :)

  • Shelly52
    Shelly52 Member Posts: 133

    Hello Cajun! So good to hear from you. I have thought of you often and hoped all was well. How are you??

  • tkemp67
    tkemp67 Member Posts: 74

    Cajun - Good to hear from you. Praying all is well.

    Cinque- finished radiation Thursday 28th of April. Skin on neck and underarm is looking better but under my boob is pretty gross. Hoping it will start to heal soon. Your 7 weeks from last radiation and still having aches and pains? So sorry, I was hoping it would go away sooner rather than later. I have a terrible time getting out of the car or getting up from the floor after playing with grandchildren. O well, it could be worse.

    fidget - I had the same amount of radiation (28 whole breast and 5 boosts), finished last Thursday. My did pretty good until about number 22 then my skin around my neck and upper chest and under my breast broke down. I used a lot of cream, multiple kinds. Everything looks better now except under my breast. Hoping you will heal soon.

    El Tigre - Just checking in. Hope you are doing well. I go back to oncologist today, I guess to get prescriptions for meds. Maybe blood tests. Not sure.


  • el_tigre
    el_tigre Member Posts: 453

    tkemp - Hi i'm good, a little ptsd & joint pain but other than that I'm good. I hope you heal fast, that sounds like a painful farewell from rads. It only can get better ;)

    I started my trial and so far so good. I don't expect many SE from herceptin and we shall see if i get the placebo or the e75 protein. I won't know for yrs but that's the way it goes.

    I'm still doing acupuncture for the hot flashes and joint pain that came along with this ordeal. I will be annoying my MO to switch me from tamoxifen to AI's because the AI's are supposed to be better but could have worse SE like joint pain.

    They will be doing my labs this Friday to check my blood count and hormone levels (they better be low since I'm on lupron). I hope both of our #'s are normal :)


  • cajunqueen15
    cajunqueen15 Member Posts: 689

    so much to read, I'm way behind! I've missed you all!

    Tiger, what trial are you doing? Anyone else? I have restarted the Everolimus trial and am off of work after my hysterectomy for another 7 days.

    Is anyone who is high risk getting Zometa?

  • el_tigre
    el_tigre Member Posts: 453

    Cajun, sending fast healing vibes your way! I started a herceptin with the possibility of getting target therapy protien E75 (50/50 chance). The trial requires a woman to have HER- (HER rating of 1 or 2) with a presence of certain proteins in the blood.

    I will be asking for AI's today via email, my MO wanted to wait since i was having joint pain with lupron and all the chemo stuff. With AI's I will be getting Zometa, I think it will help the bone density that we will be losing being on estrogen blockers.

    here's an old study it's something to try and I will get herceptin regardless to kill off any HER+ cells that remain after the chemo and rads.

    #3


  • cajunqueen15
    cajunqueen15 Member Posts: 689

    It's interesting to see all the different treatments for similar diseases (pretty sure you and I both have Luminal B). Will you have any clue if you are getting the placebooor not based on SE? I'm pretty sure I'm getting the everolimus. What AI will you be on? After a rough start after my hysterectomy, I am feeling much better.

    Sending lots of love your way! 😉❤🙏

  • tessu
    tessu Member Posts: 1,294

    Finally finished this and got it framed:


    image


  • el_tigre
    el_tigre Member Posts: 453

    Cajun - I'm told I'll find out 3 yrs from now. I am wondering if I will be able to tell if i got it or not based on SE. I go in for s skin test a week form today. Maybe if i react a smidge I'll be able to tell later if i got it. :) I'm not sure on the AI's. When I find out I'll post the name. Happy you are feeling better after your rough start, just in time for summer!



    LOVE IT TESSU!

  • tessu
    tessu Member Posts: 1,294

    Thanks, Tigre :) When I have trouble calming down by meditating, counted cross stitch helps almost as much. I have one year-long project going (tiny hearts color-coded according to the temperature outside each day), a large natural-looking pic of a barn swallow feeding her babies (that is a lot more complicated than it looked o_O ), and in between I've been making bookmarks for family and friends. But that one above was just for ME, to look at every morning when I get up, and whenever else I need a reminder ;

  • cajunqueen15
    cajunqueen15 Member Posts: 689

    kudos to you, cross stitch is HARD!

  • exercise_guru
    exercise_guru Member Posts: 333

    Cajun did you do the whole TAH/OO ? I thought you would be able to do the keyhole Davininci? Wishing you a speedy recovery. It did take me awhile to recover mostly my body went into a state of shock with all the estrogen plus AI. pm me if you need some support. I did visit the hystersisters sight quite a bit but there are not many there who have Breast Cancer, Genetics, Chemo and AI and no hormones... etc.

    I appreciate reading everyones updates. I am still having a horrible time with my hands. Now after 5 weeks on Femera my joints are starting to ache like crazy as well. I am very suspicious of the side effects reported from the SOFT/TEXTA study I have not found this minimal still I power on. I am going to a hand therapist but he says he sees maybe 3 cancer people a year. If the AI is causing all my problems hopefully my body will adjust or I will switch to Tamoxifen. I am actually finding the last two months tougher than I imagined. I thought that once I got through with the surgeries and chemo I could get with living again. My hands have made it so I can't work( typing intensive job),garden, bike, well live in general. The worst is my MO, hand therapist, you name it all have no idea what to do for it.Left hand De Quervain's Tenosynovitis, Right hand Carpal Tunnel and middle Trigger Finger. Sorry I am not sure I believe that its a coincidence. Press on ladies.

    How is everyone's entry into real life going? Its a bit of a shell shock isn't it? This week is my anniversary of being diagnosed. A bit of tears this week as well.

    image

  • twiggyOR
    twiggyOR Member Posts: 246

    Hi ladies. I haven't posted much in a while but I check this forum regularly. I'm sorry for those who are struggling and hope you find solutions that you can live with.

    I'm three days post rads. I lost skin in a spot about the size of a quarter that hurts a fair amount and the area at the back of my armpit is quite uncomfortable. I'm looking forward to everything healing up. I'm planning to start tamoxifen tomorrow but I'm not looking forward to it. I had been doing pretty well emotionally and then yesterday I got hit with anxiety like at the beginning. 😟 trying to climb out of the rabbit hole today. On the plus side, at nineteen weeks PFC my hair has filed in enough that I no longer feel the need to cover it up! I did break down and have it colored and the neckline trimmed. I was so glad I did that. It looks almost intentional now.

    Take care everyone. I think of you all often.

  • Shopgal2
    Shopgal2 Member Posts: 594

    hi gals.also checking in. Good to hear from all and still missing some who haven't checked in recently. Today is my 1 year from dx. I definitely identify with you exercise on a bit of tears. Hard to believe it's been a year since I heard the words you have cancer. I remember back then thinking it wasn't real. Then I googled the words triple negative breast cancer and thought I was gonna die at 44 after reading how bad my potential prognosis as a triple negative was. Then I found bco and it was one of the best things I did. Now 1 year later I am a different me. Braver than I ever though I could be, wiser to appreciate the little things in life, and more patient to let go of stuff that doesn't matter. I look nothing like I did before; now 50 lbs thinner and no longer hiding behind my blonde hair but proudly holding my brown pixie head high. Thinking of you all and sending hugs and smiles.

  • cajunqueen15
    cajunqueen15 Member Posts: 689

    exercise - I had a TH+ooph, laparoscopic. I was just just going to do the ooph, but with BRCA2, surgeon said the best shot for me was the whole thing. Good news is that the final pathology came back all negative! Woo hoo! I'm so sorry to hear about your hands. That's just awful and debilitating. I'm praying you get some relief soon. I'm on Arimidex and since the depression fog has lifted, no real side effects other than the horrible fatigue. Has that been tried yet or is it an option? Of course it's hard to know what is the meds and what is the complete battery that our bodies have endured in the past year. Who wouldn't be tired?

    On a positive note, I took the kids to a trampoline park today and it was so much fun. Although my WBC is still low and the Everolimus may keep it there for a year, I think back to the weekends I was quarantined in my house with an ANC of .1 and I am so grateful!

    i am going to be readjusting to the real world when I finally go back to work full time in a week. I went back about 30 hours a week before the hyst. but this will be different. More time in court, more taxing, no more help around. Here we go!

    Big hugs to all of you facing your cancerversarry.

  • Shelly52
    Shelly52 Member Posts: 133

    Happy Mother's Day! Sorry to hear about continued struggles. I'm coming up on my anniversary, too. Feels strange. It's as though the past year flew by, in retrospect - but was painfully slow while I was living it. Exercise I am on Femara, too. Very slow and achey to get out of bed or rise from a seated position. I do it slowly and then after 6 or 7 steps I loosen up and am on my way. It's as though I'm stiff and sore from a weekend of gardening - everyday. I started yoga at about the same time as the med so I tell myself I'm sore from yoga. Ha. My hands are stiff every morning and it's hard to make a fist. After I move the around a bit it goes away. Hmmm. Do you know what the actual reason is for the stiffness?

    Cajun and ShopGirl good to hear from you. Tessu - lovely cross stitch! Tigre- healing wishes to you.

    Came across the thought below. Words to live by.

    image

  • Shelly52
    Shelly52 Member Posts: 133

    Anybody getting prolix shots? My dexascan showed some osteopenia so MO wants to do prolia shots.Read a little about it. Mixed reviews regarding side effects. What are others doing?

  • Cinque
    Cinque Member Posts: 150

    Hi girls I too finding it hard to adjust. I think while you're having chemo you expect to feel like shit. My last chemo was in December and I stll feel tired and my joints ache. I am getting better but my expectations where set too high. Ive been putting of starting my Armidex because of additional side effects.....I know I should just get on with it.....

    Take care xxx

  • cajunqueen15
    cajunqueen15 Member Posts: 689

    shelley, my Dr won't order a Dexa because I'm young. I'm going to pay out of pocket and take it from there. I'm thinking about asking for Zometa but I need dental work first. I'm just not motivated to get all this crap done. I'm sooooooo sick of medical treatment. I still have monthly blood draws as part of the clinical trial.

  • cajunqueen15
    cajunqueen15 Member Posts: 689

    also, I'm considering Zometa because of risk of bone mets.

    Cinque, after the initial depression following my hysterectomy, I'm not having any side effects from the arimidex. Maybe it won't be as bad as you are anticipating.:)

  • Cinque
    Cinque Member Posts: 150

    Hi Cajun I will give it a go I think its a case of what you said...you just get sick of medicine and doctors appointments. My onc suggested Zometa infusions for bone density my Radiologist said jury is out on how effective it is. I will give that a miss for now....its the rebel in me☺ Thanks for Armidex encouragement I needed it.

  • cajunqueen15
    cajunqueen15 Member Posts: 689

    Cinque, I have had those "rare but serious" reactions to everything but arimidex, so there is def hope!! :)

  • el_tigre
    el_tigre Member Posts: 453

    I would check into that Cajun , Zometa. My Onc recommended that when i switch to AI's. Leaves less homes for cancer to settle into

  • exercise_guru
    exercise_guru Member Posts: 333

    I would be very interested in Zometa. My doc told me that I have try the pills first and then if those don't agree with me then I could try the infusions or my insurance wouldn't pay for it. Right now I am only on Femara.

  • cajunqueen15
    cajunqueen15 Member Posts: 689

    my doc said he doesn't use it unless indicated for bone density because the trials have had conflicting results. I'm going to get my Dexa and take it from there.

    Exercise, what pills are you taking?

  • exercise_guru
    exercise_guru Member Posts: 333

    sorry cajun I haven't looked into these: Bisphosphonates. He just said that insurance won't cover infusions until the pills have a reaction or are a problem. I think that he was referring to Fosamax. He also gave me a list of vitamins and such to take to try to prevent bone loss and told me I need to get very serious about weight bearing exercise.

    I guess I know now why my insurance didn't pay for my bone scan. "Luckily" the hospital forgot to get it preauthorized so I didn't have to pay for it. It came back "normal" so no biphosphonates for me.

    No. 1: Bisphosphonates: Fosamax, Actonel, Boniva, Zoledronic Acid (Reclast or Zometa)

    As far as the AI stuff. I started taking Arimidex 3 weeks after surgery and everything was going great then after 5 weeks ( 8 weeks post surgery) I had pretty significant problems with it. Severe arthritis all throughout my body, headaches, extreme vaginal pain and dryness, and my hands spontaneously started going numb at night. I developed trigger finger in 3 fingers on the right hand. Some of this was probably caused by my surgery and extreme loss of estrogen. Who knows. I went off the Arimidex for a month and most symptoms went away but occasional headaches and hand problems. They improved but didn't totally resolve themselves. Now I am on Femara I have been on it for 6 weeks. I just have a bit of stiffness in my hips. I take it around 6pm because it makes me tired but I always take it with claritan. I had read someone else who did this and who knows if it works but I was desperate to not have to bail out of yet another AI so I am sticking with it. I am also looking for every way I can to reduce "inflamation" to try to get my hands back. My hands are a total mystery but hopefully it will resolve itself. My MO is sending me to a neurologist and I go to hand therapy twice a week.

  • Shelly52
    Shelly52 Member Posts: 133

    I have not heard about the Femara -Claritan combo. Did your MO recommend this? How hear abt it? Do you take a 24 hour pill each day? Claritan D or no D? I wonder if I should try it?

    What is the list of vitamins your doc suggested? I am doing calcium, Vit D, Biotin, and B6 right now.

    Thanks you! I have. A dr visit next week. Will ask about Zometa v Polia for bone strength. Do you know if Yoga is considered bone strengthening?.

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