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Starting Chemo December 2019

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Comments

  • maryjv
    maryjv Member Posts: 269

    JRNJ-sorry to hear about the numbness-is that from chemo??? I had neuropathy on my fingers and toes but has gone away...I was given 6 weeks off, the plastic surgery office does not budge on the time!!! Wish I had 8 weeks-my surgical oncologist was so understanding, let me take what I felt I needed!


    wow! Can’t believe it’s been a year since your surgery, it’s been 6 months since I finished chemo and about 1 year since I first felt the lump...time keeps moving

  • Eigna
    Eigna Member Posts: 256

    JRJN - I also had some kind of numbness on my hands mainly but it went away.

    My lumpectomy was a year ago on October 10th! We've been through a lot in a year. Sigh 😔. Time flies by.

    As for my symptoms, I think I'm good. It's stable for now. I'll keep monitoring it but I think I will be ok.

    Have a nice weekend everyone!

  • havefaithtoday
    havefaithtoday Member Posts: 88

    Hi ladies,

    Just wanted to check in with you all and see how you're doing. I'm guessing most of us are coming up on the year mark when we were diagnosed (Oct 29 for me). What a year for sure it's been for us all. I have my first mammogram tomorrow (last one was in Nov 2019). I'm a little nervous, but praying for good results. I feel that certain parts of me have healed and certain parts are still in the works...lol. But mostly I'm struggling with taking the Aromatase Inhibitor. Has anyone else dealt with this?

    Sending love and hugs to you warriors:)


  • Eigna
    Eigna Member Posts: 256

    Havefaith- good luck with your mammogram tomorrow. Mine is scheduled for November 16th. I’m bit scared to do this mammogram but I guess we need to do it.
    Have a nice week everyone.

  • margo53
    margo53 Member Posts: 131

    Hi everyone......

    Good to hear from you, Havefaithtoday.

    I had my first mammogram a few weeks ago....Actually on the anniversary Of my lumpectomy.....I had a bit of a scare as my oncologist called to tell me to go back for an ultrasound because he was not happy with the lack of detail the mammo showed.... ( it was a 3D).....So I went back and they did a spot mammogram ( can't remember exact term), but it was a more detailed picture of what they thought was a suspicious area..... on my opposite breast, of where my cancer was! I was like....oh crap!! But it came out all clear...it sounded like a technician error to me.

    I started Letrazole in May and around July I started having daily headaches, so in September, my oncologist took me off Letrazole for 2 weeks and within 3-4 days my headaches were remarkably better. So next he started me on Aromasin.....that was less than a week ago.....so we'll see... The second one is rediculously expensive! $250 /month, AFTER insurance! Thankfully I got it thru Good Rx for $58/ month. So that's my story so far about AI's.

    I hope all goes well tomorrow

    Eigna......how are you?

    Hope everyone is doing well!

  • maryjv
    maryjv Member Posts: 269

    hello ladies!!! Good luck tomorrow havefaith!!!! I have my labs this week and f/u next week...will discuss scan I had two months ago for lung nodule (and not sure if Breast scans are needed since I had DMX but now I have the reconstruction and I am feeling all sorts of bumps and lumps)! Ugh not a good feeling at all! Hard to believe it’s coming up on a year since we were all diagnosed and I can just remember not sleeping from fear, thinking I had cancer everywhere (all my bones hurt soooo bad) and having so much anxiety!!!! But you ladies helped me through it all and I’m so grateful I found this site and all of you! Unless you’ve walked in these shoes...no one can truly understand all of the emotions and struggles we battled through one day at a time!!!🙏

  • Eigna
    Eigna Member Posts: 256

    Hi everyone! I can totally relate with all of you and the fear we have ...I’m not looking forward in going for a mammogram especially with my breast still red and swollen. I have nightmares that it will show white everywhere...cancer everywhere! And I’m so scared being called back for an ultrasound (like Margo) Happy it turned out ok for you Margo!

    I’m doing ok I’m off antibiotics since last Tuesday. I still have redness and some swelling but doctor said that it will take months for symptoms to subside. So far it’s ok : stable . Will see what the mammogram will show 🙄

    We will get through this together. One step at a time.

  • Eigna
    Eigna Member Posts: 256

    Havefaith - how did your mammogram go?

    Have a nice weekend everyone

    Today October 10th was the day I did my surgery one year ago. 😔. How time flies by!

  • maryjv
    maryjv Member Posts: 269

    hello ladies! I am here to vent, thank u all for being a safe place to talk...so many worries at one time!!! My home is 25 years old and the plumbing has gotten clogged 3 times in the past 9 months (started when I was on chemo of course!) I think my daughter puts too much paper and now have her placing in trash to see if this helps..my dishwasher broke, the kitchen light is out and the home warranty does not cover it! On top of that today I noticed that my carpet inside a closet is soaking wet! So my husband is trying to find the source and at the same time I find that the water line to the fridge is leaking 🤣 oh when it rains, it pours!..just had to let this all out! But trying not to worry, my life and Heath are much or important! Had my 3 month f/u today and everything looks great so that keeps me feeling blessed 🙏 we will get through this I know we will!

  • jrnj
    jrnj Member Posts: 408

    Maryjv, Feel free to vent away, that's what we're here for! That all sucks, but I have to admit I was worried it was about your health at first. I'm glad recovery is still going well! I don't really know why I'm in so much pain and numb in my hands and feet, Drs. won't admit anything, but I think it is mostly due to the Arimidex I am on and the ovary removal, which has eliminated all estrogen production. That combined with allergies and statins for high cholesterol is a recipe for pain I guess.

    Havefaith and Margo, yes the AIs really suck. I got bad headaches on the Aromosin and body pain. My head feels better on the Arimidex, but my body pains are killing me. I don't know if I should bother trying letrozole, if I had to choose, I would rather have body aches than headaches.

    Eigna, Hope you are feeling better.


  • Eigna
    Eigna Member Posts: 256

    Hello everyone. I was doing not bad till this weekend ...This past weekend I've developed a rash on part of my breast near my incision, on my neck and on my tummy. I was wondering if it's skin Mets.
    I did call my BS today and sent her some pictures of my rash. She didn't seem too concerned. She thinks it's only an allergic reaction and referred me to a dermatologist. I’m just fed up. Can’t see to catch a break.

  • jrnj
    jrnj Member Posts: 408

    Hi Eigna,

    Sorry to hear about that. I don't think mets would present like that, but I understand your anxiety. I hope you can find some answers and a cure. I'm still in pain every day, my hands, arms, feet and ankles. I can't believe this is considered treatment. My life will never be the same. Not sure if I can cook for Thanksgiving, or we should go out. I also am starting to think its mets, anxiety creeping back in. But I don't think mets would cause pain throughout my body, I think it would be more localized. And life is stressful. Kids 15 and 13 keep me busy and drive me crazy.

  • maryjv
    maryjv Member Posts: 269

    I’m very sorry ladies...seems as though we will continue to battle through new and unknown issues. Eigna, I really hope the rash and reaction can be answered and treated by the derm!! Please keep us updated.

    JRNJ-I understand the sideways thoughts with aches and pains, and I agree seems like you have a systematic reaction. Both my hand joints feel achy, I often feel a pull on my right shoulder blade, pain on my right sciatic nerve/muscle area and radiates down the leg towards the knee. I have had bone scans/ ct scan of abdomen and I continue weekly PT to try and help strengthen my right side. I really think I have developed arthritis but my MO has not referred me and did not mention and concerns from the bone scans. Everyone keeps telling me to give my body time to heal...agree our lives will never be the same, just pray everyday I can keep on living as long as possible 🙏❤️ We can get through anything ladies, we are braver than we believe , stronger than we think and loved more than you know!!!

  • havefaithtoday
    havefaithtoday Member Posts: 88

    Good Morning beautiful ladies. I haven't been on in a while but I've been thinking of you all. My Mammo was all good last month. Praise God. A few weeks ago was the 1 yr anniversary of my diagnosis. This season is starting to feel weird now as it brings back memories of all the apts and treatments from last year. Is anyone else feeling that? I know we are all trying to adjust to our own new normal and the world's new normal. Some days are better than others. I'm having pandemic fatigue. Feels like this is never going to end. Anyone else? What are you doing to cope?

    I found an amazing resource I wanted to share with you all, Laura Lummer, The Breast Cancer Recovery Coach. She has a wonderful weekly podcast that is so inspirational and she has lots of other resources on her website

    https://www.thebreastcancerrecoverycoach.com

    Sending Love and Healing to you all!

  • maryjv
    maryjv Member Posts: 269

    Have faith,so good to hear from you!!! I had a moment on Halloween when I saw my costume from last year..that is the day I went for the mammogram and US...brought back a very ugly feeling...I agree, this time of year is bringing back painful feelings and memories. thank you for the website Rec I’m gonna go check it out

  • jrnj
    jrnj Member Posts: 408

    I took my daughter trick or treating last year a day after my tissue expanders were removed due to infection. I was like just take them out, I don't want to go back to the hospital on halloween. What makes me sad is I feel worse now on AIs, than I did then 5 weeks post surgery and this is not temporary or something I am going to heal from. I've been waiting for the other shoe to drop with a father who is 87. He is still doing pretty good, but found out yesterday his girlfriend had a suspicious mammo and is going for a biopsy. It just doesn't get any easier.

  • Eigna
    Eigna Member Posts: 256

    Hello everyone! I am doing better with the rash. Rash is almost gone and I am not sure what I will show to the dermatologist tomorrow 🤔...

    However, it's been a couple of days I'm having UTI symptoms and I'm trying to ignore them. Is it ever going to end?

    My diagnosis was earlier, end of August and yes it did feel weird...

    My mammogram is on Monday and I'm so scared of getting the results...sigh

    Havefaith- for pandemic fatigue...I've found a way to cope with it. I do yoga before bedtime and it helps to unwind and unstress. I do it after kids are in bed. It helps me feel better about myself and less tired

  • maryjv
    maryjv Member Posts: 269

    Eigna, so glad to hear some good news! Keep us posted on how your derm apt goes! Good luck

  • HP_Fan
    HP_Fan Member Posts: 4

    Hi all!

    I joined this group last January, but dropped off pretty soon as the world became so complicated! It's been a heck of a year and I'm looking forward seeing the backside of 2020. We called it our year of three "C's". Cancer, Construction, and Covid. We had a major kitchen remodel and addition planned even before I was diagnosed, so decided to go ahead with it anyway. Painful, but super happy with my new kitchen. Anyhoo, two things...

    First, I've seen people mention pain with taking Arimidex. I'm on it as well as Zoladex. I was pre-menopausal, but ended up with multiple pulmonary emboli and pneumonitis caused by the Pacitaxel last April. SOOOOO, since Tamoxifen increases risk of clots and that is clearly a problem for me now, I had to go with the aromatase inhibitor and Zoladex as a ovary suppresant. A hematologist recommended drinking tart cherry juice (can be diluted, at least 2 TBSP juice in 8 oz water) to help with the joint and muscle pain. Not my pain has not gone away, but it is a little better and I've only been at it for one week.


    Second, I need to decide next week between two reconstruction options next week. Latissimus Dorsi Flap reconstruction vs Simple implant (I have a tissue expander now). Thanks to being put into menopause basically overnight and it being Covid, I now have plenty of extra tissue on my back, so that is not an issue :) But it is a bigger surgery. Implant surgery is easier, but may not last as long and I'm only 48. Any recommendations?

  • maryjv
    maryjv Member Posts: 269

    good to hear from you hp fan! Yikes big surgery decision...I went with the diep flap reconstruction and I am very happy...the recovery was expected 6 weeks but to be honest I was feeling really good after 3 weeks (only because I had one drain tube still hanging around), the recovery was not too hard and I am very happy with the feel and look of my boobs! I’m sure the other ladies will chime in on their experiences, good luck with everything!

  • HP_Fan
    HP_Fan Member Posts: 4

    Thank for your comment! DIEP flap was actually one of my options early on as well, but the last time I met with my plastic surgeon, he mentioned that it may not be possible depending on the Covid case load at the hospitals. (longer time in hospital after) I see him next week, so we shall see :)

  • maryjv
    maryjv Member Posts: 269

    That’s true! I was hospitalized two days in August...not bad, but they may start closing things down soon!

  • jrnj
    jrnj Member Posts: 408

    HP_Fan, I'm scheduled to have DIEP January 7. My Dr. and second opinion both mentioned Lat Flap. I said why would I take a muscle off my back when I can take the fat off my stomach? They said you could do either procedure (after I gained 10 pounds, originally he told me I only had enough fat for one, not two). So I don't feel like I got a good answer why lat flap from either of them. My impression was it was easier for the Dr. I was also under the impression that with lat flap I would still need an implant. Originally I was going with implants, but after thinking about it I am going to try and avoid them, unless my DIEP flap is too small and I really hate it. So if you are getting an implant either way, I didn't think you would "decide" lat flap. I thought they would only do it if the skin was damaged from radiation and they needed to do it. Are they saying lat flap without an implant? instead of an implant? I would go with the best option and not let COVID dictate my choice. I am in NJ, the first covid hot spot, and so far I've been pretty lucky, no COVID delays. But I may have just jinxed myself. They'll probably shut everything down right before my surgery. But what's another few months, it's been 14 already, lol. There is a lat flap thread. I read about some long lasting side effects, but of course that is not the case for everyone. Seems to be the worst for very athletic people that use their shoulder muscle a lot, swimmers.....

    I'll have to try the cherry juice. I think it's the vitamin C. One day I had a big fresh lemonade and felt pretty good.

  • margo53
    margo53 Member Posts: 131

    Hi everyone,

    I hope everyone is doing well... it's good to see your familiar names.... I have been reading all your post... seems like lots of surgeries going on. I'm so un-familiar with reconstruction procedures.... one of my good friends is having a DMX in 3 weeks with expanders , the reconstruction down the road, after more chemo. Ugh! Anyway, I'm reading and learning for her,sorta.

    As for me, I'm on my second AI ( Aramasin) and today I had a hea and my BP was high. With the first one, I had headaches daily. Also now having joint pain and gaining weight. Anyone had these issues on these awful drugs?

    Eigna: : I hope your mammogram is all good Monday. It wasn't painful like I thought it would be. Glad your rash is better too.... what did dermatologist say? I had a similar rash last week but it went away thankfully. Hoping everyone is well, safe and has a good weekend


  • Eigna
    Eigna Member Posts: 256

    Thanks Margo 🙏. I’m not taking any Al so I can’t give any advice.

    I can’t believe tomorrow is my mammogram. I’m so nervous but don’t show it. Trying to stay busy. I hope I don’t get call back for an US. I’m so worried. Then I need to wait a whole week to get my results... sigh 😔!

    I’ll keep you posted everyone. Btw rash is gone. Dermatologist couldn’t determine exactly what it was. Anti fungus cream was prescribed but rash went away without the use of it. Have a great week everyone!

  • kat333
    kat333 Member Posts: 38

    It has been a while since checking in. Wanted to say hi to all of you and express how grateful I am for having this amazing group of women to go through diagnosis, treatments, and the emotional challenges of having breast cancer. Wishing you all a happy and safe week...

  • jrnj
    jrnj Member Posts: 408

    Eigna, Glad your rash went away. Keep us posted on the mammogram. I had a CT scan on Thursday and had some anxiety this weekend, and it came back normal. Yay!! But my father's girlfriend tested positive for breast cancer. Now I am helping her with info. and feel really bad for my father.

    Margo, Yes, I'm on my second AI also. Except I did Aromasin first. It gave me headaches, insomnia, body aches. I'm on Arimidex now, every other day. Lots of arm, foot and ankle pain. I'm going to try name brand Arimidex next, and if no improvement I'll try Femera.

    Kat333, thanks for the support!!




  • Eigna
    Eigna Member Posts: 256

    Hey JRJN ...glad your CT scan came back normal.

    Mammo done ✅ Now waiting till next Monday for results 🙄

    I’m not taking Al but there’s days I have insomnia...my mind just keeps on thinking...ugh!

  • maryjv
    maryjv Member Posts: 269

    hello ladies...I still have the pain in my shoulder blade muscle as well as sciatic pain so my MO sending me for MRI, will keep you posted praying for good news

  • jrnj
    jrnj Member Posts: 408

    Maryjv, My thoughts and hope for good results are with you.

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