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Chemo starting January 2019

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  • Jenkins00
    Jenkins00 Member Posts: 99
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    The Gabapentin has helped and I am sleeping and my hot flashes are minimal. I had my follow up with my PCP and for now she is keeping on the Gabapentin, changed my Lexapro to Pristiq and reduced my blood pressure medication. Fatigue is slowly lifting and I have more energy.

    I meet with my MO next week. Will be interesting to see what she says with these changes.

  • Twinklemom
    Twinklemom Member Posts: 6
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    Hey everyone! I'm new to this site, but I started my chemo in early January, had 4 rounds of dd AC chemo, followed by 16 rounds of weekly Taxol. My last round was on May 29th, 2019.

    I was doing pretty good; hair growing back in, eyebrows and eyelashes back, energy level finally doing well. I went on a nice trip to Mexico for a few days with my husband, and when I came back, I started bad headaches. My energy levels completely tanked and I kind of feel like I did not too long after chemo ended!

    My onc wants to have a brain MRI done to check for metastases. My question is...has anyone else had a major setback like this? Is this a normal occurence 6 months out?

  • kaylajane
    kaylajane Member Posts: 39
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    welcome Twinklemom.

    Hope your MRI went well!

    I also have headaches, thought to be due to anastrozole. Went away during week off, so oncologist did not think MRI necessary. Less painful with daily naproxen. We tried both other aromatase inhibitor’s, same thing. I think my brain just doesn’t like less estrogen.

  • laurencl
    laurencl Member Posts: 203
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    Hi everyone!

    Been awhile. I see that some of you are on letrozole. Filled the script...scared to start. That’s right. I have been through chemo, surgery and radiation and I’m scared of a little pill...how are you guys finding hormone therapy?

    Lauren

  • rrshannon
    rrshannon Member Posts: 59
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    Laurencl my cholestrol went up but besides that I haven't had any other symptoms. Hope you do well on Letrozole.

  • fc2020
    fc2020 Member Posts: 9
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    So, I’m totally new to this group. Actually new to posting anything on a community forum so forgive me if I don’t do this correctly.

    I was diagnosed in Nov 2018 and had chemo 1/31/19 - 6/13/19. 4 rounds of AC every 2 weeks followed by 12 weeks of Taxol. Then 20 radiation. Lost my hair - like ALL of my hair. Started to grow some hair on my head back at the beginning of July. By mid-August I started to get body hair back. By about mid-September I needed to start shaving again. Then like end of November I quit growing hair on my legs and underarms. Not sure if the rest has stopped or not because I’m still wearing the wig. Has anyone else experienced this? Does it start again? I’d appreciate anyone else’s perspective on this.

  • laurencl
    laurencl Member Posts: 203
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    Hi FC2020

    I was diagnosed 1/19, did chemo 2/19-7/19. Mastectomy 8/8. Radiation 10-11/19. I found my leg hair was crazy after chemo(like nails) and is now starting to feel more normal. Was your leg hair different prior to all this? My under arm hair has been pretty sparse. I stopped wearing my wig the last day of radiation (that was about 4 months after chemo). I am finding that my hair in the back and sides is growing faster then on top. My hairdresser said this is normal (?). I had the mess colored because what grew back looked awful!

    Lauren

  • moderators
    moderators Posts: 8,058
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    Dear FC2020,

    Welcome to the BCO community. We are sorry for what brings you here but glad that you reached out. We hope that you will stay active and find support and helpful information from our members. Let us know if there is anything we can do to assist you in navigating your way around.

    The Mods

  • fc2020
    fc2020 Member Posts: 9
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    My body hair was slow to come back, but once it did it was pretty normal until it just stopped. I feel a bit like my eyebrows and lashes stopped too, but that may just be my paranoia at this point. My head hair is completely goofy. It’s grown at different rates, completely different texture and different color than before chemo. Mine grew faster on the back and sides too LOL. I’m going to my stylist on 1/13 (exactly 7 months since chemo ended) to try to do something with it. My nails are still a mess. I’m hoping that’s coming to an end though. The body hair just has me baffled.

  • laurencl
    laurencl Member Posts: 203
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    I do feel like my eyelashes are about 1/2 the length they used to be (and feel like they stopped getting longer). My nails are still recovering too. I never lost them (on taxol), but they did start to pull away and I was worried they would fall out. I use nail strengthener and keep them painted. As for paranoia, I have that. Every pain of any kind scares me! I describe it as PTSD! I now feel like a hypochondriac

  • Mncteach
    Mncteach Member Posts: 241
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    I’ve noticed my body hair grows strangely... starting to be normal. I too grew more on sides and back and hairdresser said it was normal. I go for my first real haircut on Saturday— almost 8 month PFC.... my hairdresser has been trimming and thinning it out ( it got really thick in the back and looked funky) every few weeks as I have been back to manicures to try to keep nails somewhat decent!

  • Jlue
    Jlue Member Posts: 5
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    I’m beginning my TCH on Monday, January 6. I have supplies for icing my hands and feet and Claritin for the Neulasta bone pain. Ready to get this party started

  • piperkay
    piperkay Member Posts: 132
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    My head hair has been growing in just fine. I finished chemo 3/21, and had my first trim in August, then again in November. It seems much thicker than before, and curly. As for body hair, the leg and pubic hair seemed to grow in very quickly, dark and lots of it, but after a few months, trickled back again to almost nothing. I'm not paying a lot of attention to the underarm hair, but it seems pretty sparse. I am not unhappy about any of that! My nails stabilized after a couple of months of growth, and the last one I lost was my right big toe nail, and the new one was already halfway grown in under the old one. Didn't lose any fingernails, but I had iced them during chemo - not my feet. I have no idea if there is any actual causal connection there, but sure seems like it. My eyebrows and lashes never completely fell out, but they are only very slowly coming back, and are nowhere near where they were before.

    Best of health to everyone in 2020!!

  • kaylajane
    kaylajane Member Posts: 39
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    here’s to allot us being a year in. Seems like more than, and less than, a year ago I was starting chemo! Still almost no axillary hair, and leg hair pretty sparse. Head- still no trim, pretty goofy looking. Hoping as it gets longer it will lay down and behave.

  • fc2020
    fc2020 Member Posts: 9
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    So the hair thing isn't just me. That's good to know. Anyone else have lingering joint pain? I've had a lot of pain in my shoulders and have started PT for it.

  • piperkay
    piperkay Member Posts: 132
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    Yes, a year in! Started chemo 1/7/19. Yippee!

    FC2020, I have developed significant pain in the joints of both hands, fingers and thumbs. Just made an appointment to see my internal medicine doc because I'm starting to suspect this isn't chemo related, but possible some type of arthritis, maybe even rheumatoid. Related to chemo? Have no idea. If the internist doesn't confirm arthritis - or even if he does - I'll ask my MO when I see her for my now-quarterly visit next month.

  • Jenkins00
    Jenkins00 Member Posts: 99
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    Hello! It will be year on March 18th since I finished chemo. Overall I am doing well, graduated to seeing my Oncologist every 4 months. However, my Alkaline Phosphate started to increase in October of 2019 and after further testing with no reason to why its increased. I'm having an ultrasound on my liver March 18th. Go Figure!

    Completed my last surgery in December and overall happy with the outcome. Still undecided if I want to have the 3D tattoo's. Not having a belly button isn't an issue. In fact I forget I don't have one until I look in the mirror!

    Hope everyone is doing well! Be well and wash your hands! I will be glad when this pandemic is over. Getting crazy and affecting my job since I work in the airline industry.

    Audra

  • kaylajane
    kaylajane Member Posts: 39
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    Jenkins, were you able to get your ultrasound with the virus affecting elective stuff? Hope it was OK.

    I am thankful not to be in the middle of chemo this year. I think how easy it would have been for me to have my mammo in November 2019 instead of 2018, then that could have happened!


  • piperkay
    piperkay Member Posts: 132
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    I was just called yesterday and told that my 6 month mammo scheduled for 4/20 was cancelled. The breast imaging center is closing until at lesat 5/4, and won't even start making new appointments until that time. This would have been the second post-surgery mammo, the first one having been in October 2019. I have to say I burst out crying even tho I pretty much knew this was likely to happen. I frantically emailed my MO and started calling around to see if other more remote places were still doing mammos. Actually found one, had my images sent over and my MO's order.

    After all this was done, I heard back from her and she said she wouldn't advise going somewhere else. She said it would extraordinary to have a recurrence so early, and that the October mammo didn't show anything but expected changes from surgery and radiation. Interestingly, she also said these 6 month mammos were done to monitor how the cavity does. I didn't know that.

    In any case, I haven't yet decided whether to go somewhere else or not. Altho she recognized the anxiety the cancellation caused, I don't think anyone can really understand how much I, and maybe we, depend on appointments and procedures meant to help us heal and prevent or detect recurrence. When those are disrupted, it's a big deal. Especially, maybe, for us who are triple negative and have no other ongoing treatment. It feels like being left flapping in the wind.

    But it's a beautiful day today, and I'm going to go outside and enjoy it!
















  • laurencl
    laurencl Member Posts: 203
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    Piperkay, in a similar boat. Had my first post surgery mammogram of my remaining breast in January of 2020. Got flagged, ended up with a biopsy, all fine (but three weeks of scary). Supposed to have a CYA “over the top “ (according to my surgeon) 3 month follow up...now. Well, I guess that is not happening....maybe next month. So much is out of our hands right now....it is very frustrating.

  • piperkay
    piperkay Member Posts: 132
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    Just an update, I decided not to schedule an appointment elsewhere. Not super certain about this decision, but I've trusted my MO before, and I'm going to keep doing it. She did say that patients getting diagnostic vs screening mammos would get priority scheduling, so hopefully I'll hear soon after they re-open. But if I don't, then I'll probably try this other place.

  • fc2020
    fc2020 Member Posts: 9
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    PiperKay, I totally understand where you are coming from. Being TN myself I depend on the check ups because I feel like it's the only thing I can do since there are no meds or follow up treatment. I'm supposed to have my check in with my MO in May and wonder if it will happen. I know doctors in other specialties are doing virtual visits for patients, but how does that work in oncology? How is that supposed to check my labs and my breast? Usually they say the changes I feel are due to the radiation, but I worry about everything that feels different now. I rely on them to reassure me that what I feel is my "new normal".

    I hope you are all staying healthy and weathering this crazy world we are in right now.

  • piperkay
    piperkay Member Posts: 132
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    FC2020,

    Yes, exactly. I did have my quarterly follow-up with my MO in late February before everything got shut down here in Georgia - which took way too long in my opinion. And you're right, you can't do labs or do a physical exam with a tele-health appt, so I feel lucky to have gotten that done. The next one is scheduled for June and I'm hopeful that one won't be cancelled. My appt with my radiation oncologist for 4/23 was already cancelled a few weeks ago, but I'm not so worried about that because I don't expect much from it anyway except a "that's from radiation" kind of response. Even so, it's possible that not EVERY little change is due to radiation. Which is why I was so upset that the mammo was cancelled - that's the one thing that will actually show if something is there that shouldn't be. Sigh.

    Good news is that so far I don't seem to have contracted COVID-19. Bright spot.

  • fc2020
    fc2020 Member Posts: 9
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    PiperKay, you just made me laugh. It's like I made it through cancer treatment, I'll be darned if this COVID is gonna take me out!

    You hit the nail on the head, I feel like everything I worry about the usual response is "that's from radiation". I wish that they had those fake boobs like they had in anatomy class. Only instead of a normal boob and a boob with tumors and cysts. I wish they had a normal breast before cancer and one that feels like a breast after surgery/chemo/radiation. Every medical professional says to be vigilant with the self exams, but then I keep feeling things that feel different than before treatment. Is that from surgery? From radiation? From the removal of lymph nodes? It scares the heck out of me because I can't go see anyone at this point. I'm supposed to meet with my MO at the end of May and I'm praying that doesn't get cancelled because they at least will look at/feel what i'm talking about and talk me down off the ledge if it is just my "new normal". God do I hate that phrase anymore! It makes me think of the Ibrance commercial which leads to thinking of MBC which makes me worry. Working from home due to the pandemic leaves way too much time to get in my head.


    Stay strong ladies!

  • piperkay
    piperkay Member Posts: 132
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    FC2020, you have expanded upon my thoughts exactly. Everything feels different in the cancer boob. AND it's higher than the other one now! Who knew radiation is better than a boob job at making at least one boob perkier! But I very much also wish I knew what was a normal result of treatment and what a tumor would feel like. Fortunately in most respects, my tumor was too small and placed in such a way that I couldn't feel it, but I don't know what it "felt" like. What I usually do now is feel both breasts at the same time - if the good one feels similar to the bad one, then I feel better. I have dense breasts to begin with which doesn't help because they've always been lumpy. Do fibrous lumps feel vastly different than cancer lumps?

    And I REALLY get annoyed by all those MBC drug commercials especially when none of then apply to me with triple negative BC. What's up with all the MBC ads anyway? Do any of us really need TV commercials about any BC drugs? Do our doctors???

  • fc2020
    fc2020 Member Posts: 9
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    I totally agree on the ads. I'm so sick and tired of them, especially since none of them apply to me. It makes me feel like my diagnosis just doesn't matter and no one is doing any research on TNBC. It makes me more scared to know that if it comes back I feel like there's nothing they can do.

    Which brings me to today's post. I never felt my tumor and now I'm feeling freaked out because I feel something. It may just be scar tissue, God I'm hoping it's scar tissue or tissue change due to radiation - anything, but a recurrence. I reached out to my surgeon's office and they're getting me in today. I'm hoping it's just my fear and anxiety running away with me and that they'll tell me everything is okay. Of course it doesn't help that I couldn't sleep at all last night and ran across an old episode of Murphy Brown and it's one where she has breast cancer. I didn't even remember that in the series, but now I spiral thinking...is this a sign? Wish me luck!

  • piperkay
    piperkay Member Posts: 132
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    FC2020, I do read about TNBC studies being done, and some are promising, but it seems that even those are being done with metastatic disease. I don't know the answer to this, but do drugs that work on metastatic disease eventually get tried on early stage cases? I should really look that up.

    I hope you get/got good news on this most recent issue. I would never have remembered that Murphy Brown had breast cancer, but I had a similar experience last year getting a wax (LOL can't even think about that now!) where all they show are Sex in the City episodes and I saw one of the ones when Samantha was getting chemo-induced hot flashes during a presentation and she flung her wig into the audience. It was funny, but not funny, you know what I mean?

  • fc2020
    fc2020 Member Posts: 9
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    Okay, so I decided to straighten my crazy chemo curls today for the first time in quite a while. I'm sad to say that I discovered that my hair is much thinner than it was prior to chemo. I'm trying to figure out if this is a permanent thing that I need to get used to or if this is going to eventually go back to normal. I don't go for my next check up until the end of this month. Do any of you have a similar experience?

  • Jenkins00
    Jenkins00 Member Posts: 99
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    Hi Everyone! Sorry I haven't been on in a while. Life has been crazy but isn't that the new norm these days?! I was able to get all my testing done for my liver and well I hate this word "fatty" but that it what the doctors are saying is causing my high liver enzyme. I have a fatty liver and need to lose weight. I am doing intermittent fasting 16:8 and so far have lost 12 lbs. I was also referred to the weight loss clinic at UTSW since I am a complex patient. Lol!

    I have developed an issue with my jaw, it pops only in the morning only. I believe it was caused by taking Pristiq which is a side affect and now no longer taking. I don't grind my teeth so working with my chiro on doing exercises and cold laser light therapy. I really don't want to add an specialist on my plate right now.

    Otherwise, I graduated to 6 months with my oncologist and 1 year with my breast surgeon. My hair is still dark and curly. I am keeping it short for now.

    Hope everyone is well!!!

    Audra

  • piperkay
    piperkay Member Posts: 132
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    Hi Jenkins00/Audra,

    I feel like you that if it's not one thing it's another. Although I've been doing fine cancer-wise (clear mammos, etc.), everything related to it and not related to it seems to be bothering me! I still have trouble with lymphedema, numbness in my armpit (can't shave there without looking in a mirror!), some kind of nerve damage in the same arm, and as of January a rheumatoid arthritis diagnosis. Whaahh??? But my hair is super curly and growing like a weed. Had to cancel a hair appt in late March and haven't touched it since. Now I'm using some of the chemo hats and headbands to tame - or hide - this wild growth!

    Be safe and well! Anne