January 2016 Chemo!

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  • Sheri64
    Sheri64 Member Posts: 113
    edited August 2016

    Prayers for you Val. Feel better soon. Yay for no cancer.

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  • Wendiwithani
    Wendiwithani Member Posts: 108
    edited August 2016

    Prayers for you, Val. Hang in there. Frill, glad you've been set free! I've been keeping up with you on Insta. I'm getting caught up on posts so here it goes...

    Tired - check

    Joint pain - double check

    Watery eyes (still) - check

    Slow hair growth - check (thanks Herceptin)

    Chemo brain - check

    Toenails falling off - check

    But, I woke up this morning and I'm kicking cancer's ass every day. So there! :)

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  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited August 2016

    Wendy, you reminded me, a toenail randomly fell off last week…4 months after finishing chemo! Ugh.

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited August 2016

    Most of my nails have some degree of lifting, plus one toenail. Today I noticed that the worst one has a fungus growing under it. Great. I called the nurse, who said, gee, I think you've gotten every side effect there is! No kidding. Anyway, she told me to soak them in Epsom salts twice a day to keep them clean, and they will prescribe something tomorrow.

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  • Frill
    Frill Member Posts: 311
    edited August 2016

    Valstim: My hospital friend, I hope you're feeling better soon. Sending lots of extra healing thoughts your way.

    Jill: Noooooo!!!!!!!!!!!! Four months?!?????? I lost one a few weeks ago - like where the whole thing came off, not like my fingernails where they broke so low past the quick if I didn't have neuropathy I would have just fallen over. #cancersilverlining

    LoveMyVizsla: Epsom salts - I need to try that. I feel like I have one other toe nail that has something funky going on with it, but I'm scared to take my polish off to learn the real truth. I finally did with my fingernails. I didn't think about them prescribing something. When I had pus oozing out of my nail I got an antibiotic, though, so I guess that makes sense. This seems more fungus-y. But who knows.

    Speaking of nails - and them growing back...are the white parts starting in weird places now? I hope that gets back to normal.

    Three weeks after chemo my hair decided to have a its second fall out. Not completely, but I got to have the whole several days of owie follicle feeling followed by the massive shedding. Maybe it was compounded by the big hospital visit, sepsis and neutropenia crap. I think I'm going to shave off the remnants and just start fresh again. Fingers crossed for some amazing chemo curls!!!!!

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  • JCS28
    JCS28 Member Posts: 153
    edited August 2016

    I am 4 months past chemo as well, and my 2 big toes have broken off partially but not all the way.

    But my watery eyes are gone! Thank goodness.

    My random side effect the last few weeks is that I will have skin irritation. It's usually a really itchy area that I scratch too hard and then it is irritated. Anyone else have this? It's often on my wrist, but just a couple of days ago it was on the top of my foot. My MO said sometimes there can be skin issues in areas that had previous damage (sunburn). I guess that makes sense.

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  • Paxton29
    Paxton29 Member Posts: 221
    edited August 2016

    Val, yay for the good news, boo for the bad. Are you feeling any better?

    My pink spot on my right "breast" has now been pronounced as very unlikely to be cancer, but the dermatologist can't biopsy with the skin stretched so tight and wants to wait until after my exchange surgery in late September. He said it is a collection of capillaries, has blood flow, and no nodules. It's not raised and has no symptoms though how would I know since I don't really have feeling there. But, at least I feel slightly better. He seems to think the biopsy is more for my peace of mind than any actual reason to think it might come back positive.

    Cancer, I hate you for many reasons, not least that you have turned me into a hypochondriac!!

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  • sarah_sunflower
    sarah_sunflower Member Posts: 47
    edited September 2016

    hi ladies,

    Its been a while since I posted here, just wanted to come back and catch up on how everyone's doing.

    Quick recap, finished chemo in March and rads in April, on Tamoxifen for five years and Zoladex every three months.

    My hair is growing back and until I read your posts here I thought I was the only one with these new curls haha I used to to hair more wavy to straight hair before chemo and now my hair is all tiny curls and seems to have a mind of its own. But I am just glad I have hair again! Its remarkable

    Joint and knee pains real for me too, I am limping for a while if I stand up after sitting for a few minutes. Sometimes I wake up in the middle of the night because of stiffness in my hands, my fingers feel like its robotic that rusted and its extremely hard to clutch my fist.

    Watery eyes has become better, and I feel my eyes blur when I get hungry or when I am feeling tired/sleepy. Other time its gotten better over the past few months.

    Hot flash and night sweats have become a routine and lucky few are the nights that these don't wake me couple of times.

    I have started running and yoga which helps with the pains, and uplift my mood on days that it all just feels like too much.

    Anyone feeling post treatment blues ? I hear its a real thing and I feel myself feeling sad and having episodes of self pity and crying on some days, its like a fog from chemo and the treatment is slowly lifting up and I am finally acknowledging that it really happened. These things usually we see happen on TV or hear that its happened to someone else.

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  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited September 2016

    I start zoladex next week...so scared of weight gain and sexual issues.

    I'm doing well on tamoxifen. I do have hot flashes and night sweats but manage then okay. Joints are achy in the morning but then they loosen up and I'm fine. Running, yoga and swimming again.

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  • Paxton29
    Paxton29 Member Posts: 221
    edited September 2016

    My eyelashes fell out again. AARGH. Granted, I still have some, thankfully, but I noticed they sure seemed short and thin.

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  • Frill
    Frill Member Posts: 311
    edited September 2016

    Jill, they should make you the Tamoxifen poster child. Seriously, because it's good to hear you say more than once that it's not giving you too many problems. I was thinking last night about other meds I take and if I started going through the SEs list and worrying about each one, meds that give me no problems at all. I could probably find a Xanax board and find people with problems with it. They wouldn't ever hear from me because I've never had any issue, no cause to look it up, etc., etc. I'm just a big bag of what if, what if, what if, what if, what if.........

    And like Paxton says, cancer makes me think about this stuff way too much.

    Sarah, if I could ever *finish* treatment....lol!!!!!! I'm not sure how much this infection/hospital stay is going to put off radiation. Nothing is showing up on my schedule. I'm really starting to believe that I'm going to be in the Guinness Book of World Records for longest breast cancer treatment or something. LOL! But I can totally hear what you're saying. Most of this feels like moving through a dream. I can't even imagine what it will be like when it's "over." Over doesn't even seem in sight yet, since I haven't even started reconstruction yet.

    Right now it's like a spectre I've been trying not to acknowledge, but with this last hospital visit, really should. I'm trying to stubbornly rest. But fuck - I want to be running, doing couch to 5k, something. I don't know how to balance.

    I have some nail stuff in my office desk that was really awesome when I had natural nails. It actually really, truly worked. I'm going to give it a whirl on the chemo nails and let y'all know how it goes along with pure tea tree oil. I really can't stand this ugly hand business. I can cover up not having lash extensions and do my brows and stuff, but the hands....I'm about to crochet some gloves and just go Downton Abbey till this gets fixed. Lol!

    Oh! And my latest fun thing from the hospital adventure - I believe it's from being pumped full of 9 pounds of water in a couple of hours, plus more after that - is that I'm literally peeling head to toe like I had a sunburn. I'm like a snake. Ssssssssssssss...........

    Stupid cancer, stupid, stupid cancer.

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  • Wendiwithani
    Wendiwithani Member Posts: 108
    edited September 2016

    Jill, I am doing well on Tamoxifen, too. The SEs I have now, I've had since I started chemo really...joint pain, etc. I am walking 30-45 minutes daily and have a LOT more energy. I'm having zero issues on the sexual front. TMI maybe, but I know it's a concern for many of us.

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  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited September 2016

    but once wants me to start ovary suppression, than change to am AI. I wish I could just do tamoxifen but evidently this is more effective so I have to try, but I'm super worried.

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  • sarah_sunflower
    sarah_sunflower Member Posts: 47
    edited September 2016

    Frill, my heart goes out for you and please know that you are in my prayers. Believe in yourself, I kno its f....cking crazy sometimes and we just want to say 'f,, off cancer!' I have had those angry bursts towards cancer many times, but know that you have come this far and you will beat this! You are a strong woman who has amazingly shown much humour through this trying times. Big hugs!

    Jill, I started Zoladex before my chemo, my onco said to do this ovary suppression before to help protect my ovaries from chemo since I don't have any children, to put me in a better position in the future IF and when I am ready to conceive. When I complained of joint pains, my onco told me its mainly due to lack of oestrogen (caused by Zoladex) and that I will get 'used' to it or rather accept it as time goes by like old people stop complaining about joint aches after sometime. Except for me it happened rather drastically so still trying to adjust. I have noticed yoga(stretching) relieves much of these aches. Its shown to reduce recurrence so I'm bearing it up for two years. I will continue Tamoxifen for five years though

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  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited September 2016

    thanks for the info Sarah. For me there is no after zoladex unless I get my ovaries removed. I've been told I should be on it until I'd reach a natural menopause.

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  • zinny
    zinny Member Posts: 281
    edited September 2016

    Hi Y'all:)

    I started Zoladex/Letrozole pre chemo and then took a break and started again in July after surgery. Lots of stiff joint stuff, which my MO attributes to the hormones. However, I was on the hormones for 3 months pre chemo and had no joint stuff and then started the joint stuff about a month after starting hormones again. Some people who have had chemo but not the hormones seem to be having it too, so it may be a chemo side effect?

    Sexy times not so sexy these days ;) but I don't think that is as much a hormone thing as a not feeling this version of my body as a very sexual thing right now. Hope that gets better.

    My plan calls for 5 years of Zoladex and 5-10 for hormonal stuff - a swap over to tamoxifen, possibly, if I go off Zoladex in 5 years - I'll be 52, so slim chance of ovaries kicking back in. Have thought of getting them out. My MO feels there is no cancer related advantage. Thinking on that one. Will be starting a bone building drug, Zolandronic Acid, every 6 months.

    Frill, it's like you got a free all over chemical peel!! What a shitty course you have had. Some of you women have shouldered way more that their fair share of side effects. There should be some kind of balance with that, like you get the prettiest recon at the end or something. crappy. sorry.

    I am doing pilates for my core and holy crap it is amazing how weak it got after the DIEP. I still have to roll on my side to get out of bed! But getting stronger, and walking and working with a trainer and thinking about yoga which is as close as I will probably get to doing it :/'

    Sending everyone healing wishes.



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  • FLBuckeye93
    FLBuckeye93 Member Posts: 87
    edited September 2016

    Paxton, my eyelashes and eyebrows are falling out again, too. My last chemo was in March. So weird.


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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited September 2016

    ditto. eyebrows and lashes have done another drop. last chemo 4/18

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited September 2016

    Eyebrows too, Val? I thought it was just the lashes that did it

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  • zinny
    zinny Member Posts: 281
    edited September 2016

    Going to be serious about the matisse, then, to avoid the second drop!!

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  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited September 2016

    oh gosh, my eyelashes are so long and thick now, my eyebrows are a bit more sparse than they were before but they are OK. I really hope they don't fall out again. Sorry to those of you that are going through this.


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  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited September 2016

    also I had my Zoladex shot Thursday, the shot was uneventful, so far I haven't really noticed any difference in how I feel. I'm still having hot flashes but I've had them since chemo, and the tamoxifen continued them, pretty used to them they don't bother me too much. As of last night I was OK on the libido front :

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  • fightergirl711
    fightergirl711 Member Posts: 300
    edited September 2016

    Zinny - I started monthly Lupron shots two months ago and Letrozole about two weeks ago and my body feels like it is 90 years old. I don't know if it's a combo of post-chemo pain or the Letrozole. Are they recommending anything for the stiffness other than exercise and waiting it out? I wonder if it normalizes after some time. Before chemo I could do pushups, now I carefully get on the ground and can barely get myself up again. Pushups hurt my elbows too much, it's crazy. I figured I wouldn't be as strong but holy moly! Every morning I wake up feeling like I worked out like crazy but haven't done much other than walking/jogging and getting to my karate class 2x a week!

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  • Frill
    Frill Member Posts: 311
    edited September 2016

    Seriously, 4 months and MORE hair loss? I'm not sure I can take it again. I am Latisse-ing my little brow and lash heart out. I don't think I lost (m)any lashes with the hospital hair fallout, but looking at my brows, there's definitely some loss that wasn't there before. *sigh* I'm just slathering the remaining drop of Latisse that doesn't go on my lashes on my brows. It's just disheartening. It makes me wonder what causes it, if it's from detoxing from rads, chemo, or both, a byproduct of the hormone stuff, what.

    Week after next I have my appointment with my RO to start getting rads starting, I think, although this time the simulation isn't scheduled like last time. It may be because of the whole hospital thing, and because I said I was peeling like a snake, etc.

    My DX anniversary is coming up. I truly thought I would be done with this crap by now. I think I thought last year I might even have boobs by now, or getting close to getting them. Wow. I know it's supposed to be some big "survival date," but I don't remember it positively at all. I remember that stupid first doctor telling me I'd be permanently disfigured, I'd age 20 years, . . . and that's when he thought I had a 1cm tumor.

    I really, really want to get back to working out. I know I would feel better, if not anything else, mentally. I am getting so incredibly depressed and my energy is just nil. Although in reality, I have to have enough energy to drive myself back and forth from Tex to La, keep this humongous house clean, cook, etc. Then after I'm sick, sick, sick. And it's like my family has no clue. I'm sick in bed all day Sunday because I was up till 4am Saturday (Sunday morning) sick. Today DBF wanted me to meet him for lunch and go with him to his pool game tonight. I'm barely able to get out of bed.

    Is anyone looking at what they're putting on their skin now, like parabens? That seems to be the one I'm most worried about. It's like one cancer causer. If bc hasn't triggered my hyper vigilance and OCD....lol, nothing ever will again.

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  • FLBuckeye93
    FLBuckeye93 Member Posts: 87
    edited September 2016

    I feel terrible for you Frill. I have changed all of my products especially lotions. I use Beauty Counter, which has eliminated 1500 chemicals banned in the EU, but not here. I also find stuff at a health food store. This is a good website to check the toxicity of your products. http://www.ewg.org/skindeep/search.php



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  • FLBuckeye93
    FLBuckeye93 Member Posts: 87
    edited September 2016

    So this week I'm headed back to the surgeon because I had a biopsy on my other breast last week, which shows I have atypical lobular hyperplasia cells. These are a precursor to cancer. Really?? After chemo and Arimidex I still have shitty cells in my boobs.

    I'm wondering if I should have a double mastectomy and just be done with it all. I doubt my surgeon will think that's a good idea, but I'm tired of looking over my shoulder waiting for the other shoe to drop. Sigh.

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited September 2016

    Oh no, Buckeye. Keep us posted on what they want to do.

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  • zinny
    zinny Member Posts: 281
    edited September 2016

    Sorry, Buckeye.

    Passed my own Dx-aversary, Frill, weird and almost out-of-body feeling experience. It feels as if a huge amount of time and no time has passed.

    Eyelashes jumping ship again. So unimpressed. They were briefly glorious. At least one thing that was lovely. Working hard to get my fitness back with pilates with a trainer once a week and gym with a trainer twice. Damn I will be stronger at the end of this, if nothing else.


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  • Jinx27
    Jinx27 Member Posts: 238
    edited September 2016

    Hello Ladies!!!

    It's been forever, took a quick hiatus from the boards I thought of you all not too long ago.

    How is everyone???

    Celebrated my 28th bday in July and cancerversary on the 8th of this month, most recently I started up my science prereqs for nursing. Still working full time.

    After chemo ended for me in April I went all summer with no meds, the break was great. I started Tamox with my new MO this month and it's not too bad. Side effects like headaches and hot flashes and mood swings are driving me nuts though.

    My new MO, wants to have me on Tamox until Nov, then check my hormone levels and then discuss Al+ovarian suppression.

    No sexual dysfunction yet, lubrication and arousal are fine. I miss my nipples though. Im set to have a consult for nipple recon in October.

    My hair is back! Eyebrows and lashes flourished this summer but are acting funny since I started Tamox. My lashes shed slowly as well as the tails of my brows.

    Hope y'all remember lil ole me!

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  • zinny
    zinny Member Posts: 281
    edited September 2016

    go Jinx! You sound like you are in great spirits and doing very well. Happy to hear.


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