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Starting Chemo September 2021

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  • sarah_78
    sarah_78 Member Posts: 119
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    Hi ladies of September chemo class,

    we almost all graduated, good luck to Hummingbird for the last chemo.

    I have my bilateral mastectomy this week Thursday. It is kind of sad to lose a boob but more worrying to think about how to manage lopsided or how hard the reconstruction will be. Trying not to think about it all and get it done, all I hope/pray for right now is having pCR, which looks unlikely, but not impossible.

    Sorry for everyone having neuropathy pain. Neuropathy should recover slowly after chemo from what I read, hoping the best for you all on that front. I have some weird pain, not sure what it is, my left wrist swells and can't move my hand, 2 days later my finger joint on the right does the same thing. It had been going on for 2 weeks and finally today I don't have any of that and hoping it sticks until surgery. I had been in pain and couldn't sleep most of the days, wonder if some of it is stress related or another form of neuropathy (some nerve damage).

    Thank you mindthief and hummingbird for sharing hair progress, it really helps, my peach fuzz is close to mindthief's but with bald spots over my ears where my cold cap didn't cool. Hope those hair come out as well.

    Debbie, glad you are recovering well. I'd like to ask, how much of daily activities can you do right now? Is cooking possible? Walking? I have no idea about what to expect, trying to mentally prepare.

    Wish you all a wonderful weekend

    Sarah

  • spades2525
    spades2525 Member Posts: 47
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    Hi everyone! I just finished my last chemo yesterday and I rang the bell like it was the most important moment ever! Sadly with no family or friends able to be there and just having one nurse cheering me on it was a little bit anti-climactic. But that’s OK. I’m still pretty happy to be through that mile stone. I don’t have my appointment yet to map for radiation and was told likely I wouldn’t start till early March. I love seeing the hair pics. When I went on the lower dose Taxol, I did start to get some very light hair regrowth, mostly white fuzz. I am hoping for some mad growth by the end of this month! At least all over the head. Right now I literally have old man hair. Just around the edges bald on top. Not the cutest look.

    Sarah, after my right mastectomy I found I could do minimal activity for that first 7 days. We planned for that with delivered meals and extra help. But then light cooking, short walks, all of those things started to become possible but then when the drains came out that’s really when I felt like I could handle more activity.

    Debbie, hoping for a good path results for you and on going smooth recovery.

    And I hope everybody’s nail and neuropathy issues resolve quickly!

  • DebbieM1958
    DebbieM1958 Member Posts: 105
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    Spades2525 - Congrats on finishing chemo! Such a proud moment! Good for you.

    Nails and neuropathy still being an issue for me - I don't know how many nails I'll lose yet but they are super sensitive and I can only wear open toe shoes now. Ugh. If it wasn't for these symptoms I would be doing just fine.

    One week since my double masectomy - saw the surgeon yesterday and he is pleased with my progress. Says it all looks good and healing well. Pathology came back and shows no spread of anything further than originally found and they got everything out through surgery or via chemo. Not sure if I will need radiation yet but I meet with that doc on Feb. 7th and will find out. But all good news. Drains still in place for now, hopefully out next week sometime. All good news!!!!

    Happy weekend to everyone!

  • sarah_78
    sarah_78 Member Posts: 119
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    @Spades2525 thanks for explaining me about the activity. I just went to see my surgeon today, since tomorrow is my left mastectomy. He said I will stay in hospital until drains come out. Shocked He thinks it will be 7 days or so, but I read in forum people get them out much later. I am so confused right now. I don't want to spend 2 weeks in hospital *sigh*

    @Debbie, hope yours are taken out soon and your neuropathy gets better. How are you doing now?

  • DebbieM1958
    DebbieM1958 Member Posts: 105
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    Sarah_78 - best of luck with your surgery tomorrow. I am sending positive vibes for you. 2 weeks in hospital??? That seems excessive - they sent me home the same day after my double mastectomy. Hmmm... I know they do things differently at different places but perhaps you can ask if you can head home sooner than that - can't hurt to ask. I am able to manage my drain care just fine at home and moving around doing my stuff, slowly and carefully but moving nevertheless. Every day gets a little better. I will be very glad when I can get the drains out though, it makes for uncomfortable sleeping and finding a good position. They said the drainage has to be 30ml or less for 2 days before they will remove and so far I am not close to that #. Pain is manageable, I have not had to take any pain killers since the 1st day but I am a big baby about taking pills (have to crush everything) so its a chore for me to have to take something. I hear 2 weeks is the magic mark when you really start to feel a lot better. That will be Friday for me. Please keep us posted on your progress. Love to everyone....

  • HummingbirdAZ
    HummingbirdAZ Member Posts: 93
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    Happy Groundhog Day! Six more weeks of winter...but there's six more weeks of winter anyway, LOL. Fun fact about me: the house used in the film "Groundhog Day" with Bill Murray was my house! I lived there while they were filming with my at-the-time husband and five little children. It was wild and I remained friends with Harold Ramis until his death. If you happen to watch it today (or any day because it's on all the time), watch for the blue minivan driving in the final scene--that's me with my 14 mo. old and just 3 year old in the back!

    I'll be thinking of you tomorrow, Sarah! I agree that's a long time in the hospital and you'd likely be more comfortable at home. If you don't have a caregiver for a week or so, that could be why. I had a lumpectomy and node dissection but really did need some help for a few days.

    I'm looking forward to the last chemo on Friday--have my outfit all picked out, haha! I'm still suffering through the shingles pain and saw the pain management team yesterday. I've got a medication to try for a week and they think I might need an epidural nerve block to alleviate the pain if the pill doesn't work. I have my radiation mapping on 2/24 and will start 7 weeks of that the following week.

    I guess we are all post-chemo! Congrats to all for getting through it. Let's check in from time to time to say hello and see how everyone is doing? This group has been a Godsend throughout the process and I feel as if, even though we don't know one another, we have a solid bond between us Hug

  • DebbieM1958
    DebbieM1958 Member Posts: 105
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    HumminbirdAZ - Wow, that's so cool about your part in Groundhog Day. I will watch for your minivan next time. Happy last chemo tomorrow. Hope that shingles pain will soon be a distant memory. I will find out about radiation or not next week. And I agree, this group has been amazing - strangers all connected by the same issue and we definitely have a solid bond. I will miss the communication when we are all better and on to other things.

    Sarah_78 let us know how you're doing after the surgery. I will be 2 weeks post surgery tomorrow. Yesterday I had a low grade fever all day and was petrified I would end up at the ER in the night but thankfully it has subsided to normal. I have an incision check with the nurse practitioner later today - think I may have a slight infection somewhere, more red around the area than yesterday. I expect I will get antibiotics to keep things at bay. Still have those darn drains in place but maybe next week. Drainage is still well past the 30ml they want to see before they will remove them. Oh well, I've heard from many that it is over 3 weeks sometimes. Ugh.

    Nail issues are still ongoing, very common apparently post chemo, just like the hair falling out sometimes the nails do too. Neuropathy comes and goes, just in my feet. A friend I have made in Atlanta said her doc (podiatrist) told her to rub Vicks on her feet and wear socks at night. Haven't tried it yet but we'll see.

    Take care everyone XOXOXOXO


  • spades2525
    spades2525 Member Posts: 47
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    Hummingbird! Best of luck on your last chemo today!! It's such an exciting milestone and I'm so proud that you made it to this point. I hate that the shingles pain is still unmanaged and certainly hope that gets managed soon. Also exceptionally cool fact about the Groundhog Day movie! We just watched it as a family not too long ago but I'm gonna have to go back and take a look for that van.

    Debbie, I'm glad your recovery is going well and I hope the drains get removed soon!

    Sarah- best of luck for surgery today and I definitely hope you don't have to stay in the hospital that long! Mine was day surgery.

  • sarah_78
    sarah_78 Member Posts: 119
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    Dear September Chemo Class,

    everyone finished yet?

    I couldn't write since my password to log in to the site is only from my laptop and I only had my cellphone until now.

    I got my surgery (left mastectomy) last Thursday (3rd of February) in the morning. Today in the morning my drain was taken out. According to the current plan, tomorrow (Monday) I will be discharged after talking to the doctor in the morning. I am taking pain medication because it helps to control inflammation as I am told, but have little to no discomfort. I can move my arm in the range I am allowed to now (elbow not over the shoulder) and hoping to extend it slowly.

    A little bit anxious waiting for the pathology results, hoping I don't need another operation to clean the edges and very much hoping nodes and breast was free of cancer. The surgeon said that my whole breast tissue was hard and it was a very hard surgery for him, he thinks it might be due to radiation I received 10 years ago (Hodgkin's Lymphoma) *sigh*. Still hopeful and waiting.

    Hope everyone else is doing good and slowly bouncing back to their routines. I have 12-14 weeks of Herceptine or Kadcyla before me, radiation probably not due to risks of double radiating the same spot. I will report back when I know better.

    Virtual hugs

    Sarah

  • sarah_78
    sarah_78 Member Posts: 119
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    @Debbie Just read your post, I have areas over my breast which are numb or hotter than the parts around. They check here twice a day and each time when I point them out, they say it is normal. Hope yours is normal too. Low grade fever can be something else as well, glad it is gone, take care of yourself, don't push too hard with activity, baby steps I call it for me now.

    I just remembered, I ordered some nail treatment oil from UK, it is special for chemo.

    Will take a picture of the box when I get home for you, maybe you find it there too or you can order it.

  • DebbieM1958
    DebbieM1958 Member Posts: 105
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    Sarah_78 - glad to hear from you that surgery is behind you. Wow, they took your drain out already?? Lucky! They are so uncomfortable but mine are still in place and its been 2 weeks. They said they will stay there till drainage reaches 30 ml or less for 2 days in a row - or they will take them out at the 3 week mark. Ugh. Will be so happy to have them out. I think I will sleep better. They put me on Keflex for the mild infection I got and it seems to be doing the trick, no fever and I feel much better. Hoping for you Sarah a good pathology report. Waiting is the worst.

    Yes, please send me a picture of the nail stuff you ordered. It may be too late for me as I know I will lose at least 3 fingernails and probably 3 toenails as well. Anyway, it could be worse I guess.

    Love to everyone for a great Sunday!

  • sarah_78
    sarah_78 Member Posts: 119
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    Dear Debbie,

    called my husband to get the name on the package.

    It is this one: https://polybalm.com/

    The naturopathic team in the hospital recommended it, there is a study which shows it worked. Hoped it is not too late. <3

  • HummingbirdAZ
    HummingbirdAZ Member Posts: 93
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    YES, I think our chemo group is now finished! I am going to have a few days of side effects but am so looking forward to my 3 weeks off before radiation keeps me home for another two months. I'm off to LA this week to see my daughter's new house that she's been in since last summer then to Albuquerque to hug my grandkids and touch my other daughter's pregnant belly!

    Sarah, happy you're recovering quickly and drains came out fast. Sounds like you'll recover well, so now just waiting for the pathology is the only stress. Be confident!

    Debbie, yours will come out soon, but the drainage is important so let them drain. I also have some nail issues. One of my big toe nails is almost off and the other is following. The nailbeds turned purply-black then the nail started lifting from the top down so I've been trimming. I hope they come back! My fingernails all turned blue at the nailbed and were crumbly from the top. None lifted but they would just disintegrate. Now there is some white starting to show so I know growth is happening.

    Spades and Mindthief, thank you for being supportive as we were the only ones on the AC+T course. And all you other ladies, best of luck as you move forward, whether radiation, surgery or other therapies, be strong and have hope!!!!

  • DebbieM1958
    DebbieM1958 Member Posts: 105
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    Hummingbird - thanks for the feedback on the nails. I am having exactly the same thing as you describe with mine. Good to know its not just me!!!! My one big toe is incredibly painful at the corner but I think that's because I have an ingrown toenail that I can do nothing about for now so I am just extremely careful not to bang it and wear only open toe shoes.

    Enjoy your time with family coming up - so special.

  • DebbieM1958
    DebbieM1958 Member Posts: 105
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    Thank you Sarah - I will order some right now!!! Happy healing.

  • HummingbirdAZ
    HummingbirdAZ Member Posts: 93
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    Debbie, the doctor assured me this is 100% normal and will resolve itself and the nails will be fine. She said to just keep trimming the lifted or dead nail. Taking Biotin can help and is safe, so I just ordered some. It also helps with hair growth, kind of like collagen, which is BAD for cancer so don't take that!!!

  • oldladyblue
    oldladyblue Member Posts: 302
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    Woohoo everyone is done with chemo now, Hummingbird glad you started this thread. I hope continued treatment continues well for everyone.

    Be careful to keep Covid protocols, I ended up with Covid this week, I swear I felt worse the first 3 days of Covid than I did during the bad chemo days. I think I had every single possible symptom. Don't know where I got it from. Recovering well now.

  • DebbieM1958
    DebbieM1958 Member Posts: 105
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    HI again Sarah - I didnt get the cream because when I read the information about it, it said start using as early as possible into chemo and continue 6 - 8 weeks afterwards. I am well past that time now so I think it wouldn't be helpful to me now, darn it. Wish I had known about it earlier. Oh well. I guess the nails will eventually grow back. Hope you are doing well.

  • CMR79
    CMR79 Member Posts: 5
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    Hi Everyone!

    I haven’t been good with logging in and keeping up with everyone, sorry :(. I also started chemo in Sept. Started with AC and just finished 8 of 12 taxol. I had a week delay during my 3rd round of AC due this low WBC and then got COVID at Christmas that delayed treatment for over 20 days. So I will now finish chemo on March 7th.

    I’ve read through the threads and happy to see everyone is finishing up chemo and I’m counting down the days! I saw that many have experienced some form of neuropathy. From what I have read, it’s common in the feet and hands. However, I’m having tingling and light numbness in my face. My oncologist basically said this is not a side effect so not sure what it is…I noticed the tingling happens on transfusion days. I was out in the cold today for an hour at my sons baseball practice when the tingling started to happen and last time after I had some caffeine. I have cut my caffeine but every now and then I crave a coke, not a lot though. I read cold weather and caffeine can be triggers for neuropathy. It doesn’t hurt but more annoying that my face is tingling and a little numb and can take 2 hours to completely go away. Has anyone had or heard of tingling or numbness other than hands and feet? Im thinking it’s neuropathy and only started after starting taxol. Im contacting my dr again as well.

    Also, I thought I would have a PET scan after finishing treatment but my dr said no because they have a hard time getting insurance to cover them. CT scans and PET scans get approved only when symptoms come up. He said he can try though. Has anyone had the same experience?

    Thank you!

    Carri

  • smoothoperator78
    smoothoperator78 Member Posts: 72
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    congrats to everyone finishing up (you’re almost there too, Carrie).

    Also, don’t be afraid to ask for physical therapy. It’s really changing things for me.

  • DebbieM1958
    DebbieM1958 Member Posts: 105
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    Re. Radiation - the specialist I talked to has sort of left it up to me to decide if I want it or not. Looking for any input. She says previously in years gone by they would do the surgery first and then the chemo. If that were still the case, based on my pathology she would not recommend radiation. Now however they do chemo first and then surgery. Although they confirm they have removed everything and my margins are clear she says there is not enough research yet about whether radiation would be beneficial for me. I asked her what she would do - she said she would have to think about it strongly. I am leaning towards not doing it but want to make an informed decision. Look forward to hearing from anyone. Thanks.


    Also re. banding/cording after my double mastectomy - anyone else had this tightness and discomfort? I have read that its pretty common and can last weeks or months. Any suggestions? I am nearly 3 weeks post surgery now and starting some more advanced exercises.

    Thanks so much.

  • HummingbirdAZ
    HummingbirdAZ Member Posts: 93
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    Hi Debbie, I had surgery with lumpectomy and planned radiation but got that stage upgrade and ended up with chemo after surgery. I questioned the need for radiation after chemo and here is how it was explained to me: Surgery most often removes the entire cancer and could resolve the problem right there with local treatment. With more aggressive or advanced cancers, however, and considering there is no real "test" for cancer cells that have not become lesions, treating the potential cancers systemically with chemo should take care of any remaining and/or traveling cancer cells. The radiation is a regional approach that target where the original cancer was found because breast cancer is one of the highest recurring cancers and most often in the original site. It is kind of like an insurance policy. So, local/regional/systemic is the approach. It seems logical but still a lot!

    I was SO excited to have a little cancer-treatment-free time this month to see my kids and grandkids but now my weekend trip to LA has to be cancelled due to my son-in-law getting Covid yesterday. He's definitely going to be an outlaw now! Good news is I've started to grow some tiny little eyelashes. Between pandemic working from home then cancer, I haven't worn mascara for about 2 years. I'm going to have to buy a new tube in a month or so, LOL.

  • oldladyblue
    oldladyblue Member Posts: 302
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    Radiation was MUCH easier for me than chemo, side effects almost negligible, and now I am two weeks post radiation and things are pretty normal again. Just a bit of skin discoloration as a result. If a doctor suggests you need radiation, I would strongly consider it. It probably will be much easier on you than chemo was. I personally know 2 women in my life who had mastectomy surgery NOT followed by radiation who ended up with metastatic cancer 10-13 years after their prior breast cancers. One called me last year when she found out about my diagnosis to urge me to do everything the doctors recommended. I do not know the specifics of their cancers or treatments, but I learned enough from them that I will do everything to a T that the doctors recommend. Perhaps you need to get a second opinion from another doctor, as I did when I was given a choice between AC and TC chemo. The second doctor I saw did not give me a choice, but told me what would be medically best (TC).

  • mindthief
    mindthief Member Posts: 62
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    Hi all, just checking in and glad to see everyone seems to be progressing well.

    Sarah_78 - so glad your surgery is done and you are healing well so far. Fingers crossed for a good pathology report!

    Hummingbird - yay for finishing chemo! That's so cool about Groundhog Day! I love that movie. Good luck with radiation. 7 weeks sounds like a long time! I guess they're doing a wide area because of the nodes?

    Carri - I was told at one point they would do another CT when I finished treatment; now my MO is saying probably 6-8 months out. I'm considered very high risk for recurrence but the normal process in Canada is that no one gets scanned without symptoms. I've had more than one family member point to me that I have no way of knowing the chemo has worked, which is super helpful, lol!

    As for me, I just finished week 3 of 4 of radiation. My skin is holding up so far, with some minor irritation. My only real issue is with various aches and pains that they are attributing to my position on the table. Really hoping that's the case and it improves once I'm finished. They are sending me for an ultrasound of one area to check for a problem with the tendon and rule out anything more sinister. Always something to worry about ;) I also am officially considered menopausal now and have started on letrozole. No side effects from that beyond what I already had from the chemopause, but I'm only a week in. I'll also be starting zometa infusions, which I've read on here can be a nightmare. Anyone else doing these treatments?

  • CMR79
    CMR79 Member Posts: 5
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    Hi Debbie-

    I highly recommend PT. I was my own advocate and contacted my surgeon about getting a PT referral because 3 months out past my bilateral mastectomy I still had limited movement in my left arm. Found out I had cording and just after a few sessions, I had so much improvement! I will continue with PT through radiation as well so I don’t regress.

    Regarding radiation, I personally would do anything to fight it. I will start radiation in April once I finish chemo. I initially was diagnosed with stage 1B and they recommended radiation after surgery. After surgery it was found in 4 lymph nodes so chemo was added. Radiation was always part of treatment.


    mindthief- exactly how do I know if chemo worked? I had surgery first so I know the cancer was removed but for peace of mind would like to have a PET scan for assurance since I had lymph node involvement