Starting Chemo September 2015; join us!
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I hope everyone keeps updating us when they can. It's been such a help to read through everyone's thoughts, experiences and even complaints. We're not going through this alone!
I may have completed my final dose, but I still feel like total crap so I sure don't feel like chemo is "over" just yet. Now I just wonder how long it's going to take until I start to feel semi-human again.
To top it off, I think my final dose may have given me a touch of neuropathy! I knew I didn't want to do that dose, especially since I had been so sick the week before.
I've been checking out the Winter Rads group although I don't yet know when I'll begin those. Several of our friends here have joined that group.
I'm sticking around here and glad to read how everyone is progressing!
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I also read this every day even though I don't post often. I agree that everyone should continue posting and sharing experiences. I liked the sisterhood term. We do indeed share a very traumatic experience and this board has been vital to my mental health thru this sh#t show.
I am almost 3 weeks PFC and finally starting to feel better. My taste buds and sense of smell took a severe blow from chemo. I am just now starting to get smell and taste back. My head has white fuzz and some dark sprouts trying to come in but still a long way to go. I'm afraid to take biotin because it will make my facial hair grow also. 😱
I meet with my bs on Tuesday. The plan pre chemo was to do a re-excision. I'm filled with worry about whether a mx or bmx is a better choice.
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I have male pattern baldness going on too! My top hair is taking its sweet time catching up to the back. Lol
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twiggyOR that is a tremendously challenging decision. Do they feel that you would like the appearance of your breast and nipple if they go back in and take a bit more out? Would you be ok with it? If not would you have specialists that you can meet with to discuss your other options. Would you do radiation if you did a BMX? those are a lot of the factors.
I am feeling much better about my implant swap and fake nipples now that the swelling is going down and the scars are healing but it was a huge long road. I still don't know what the best choice is so many things factor into it.
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It is a hard decision. They didn't think appearance would be an issue and I think I would have to do rads either way. For me it's more a question of whether they got it all out and the risk of recurrence.
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hi everyone... Just found this thread.. I started chemo in sept and recently finished... Had oopherectomy 1.11.16
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exercise: your comment "No one really understands unless they have been there and gone through it." is SO TRUE. I certainly didn't.
Glad to hear smell and taste do recover from chemo!!! Guess I need to be more patient. At least my gums aren't sore anymore. I'm almost three weeks PFC and still bother husband to "come sniff this room, I smell something burning" at least twice a week. Usually at bedtime. He is not amused. And I only add minimal seasonings and salt when I cook after mega-over-salting a few times (But at least I've recovered enough energy to cook non-instant foods again most days.) Most everything still tastes like cardboard though (except broccoli and lingonberries (in oatmeal porridge) -- go figure.
I still read everybody's posts here every single day, even though I don't post as often. No support (or worse: sarcasm) at home, so you strong brave wonderful women here have been my lifeline. I would never have kept up hope or gotten through chemo without you
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Re: Taxotere and maybe other neuropathy: The pain then numbness in my fingers started after my very first dose of Taxotere. Oncologist didn't offer cold gloves until after I got damage. Then cold gloves plus B 12 and B 6 vitamins (forum advice, onc said wouldn't help, but I started them anyway) limited progression during the next two Taxotere doses --- still got worse for a week, then improved some. Also temporarily worsened a bit after each FEC, but now almost three weeks out, there is only partial numbness on the right thumb and all left fingertips (but left has some pre-BC nerve damage). At its worst all fingers were completely numb and hurt/burned like h*ll. I can live with what I have now: all pain is gone, numbness improving slowly with time. So don't give up hope!
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Luzlee give yourself time to relax and just be. It's your time now to distress from chemo. Your mind needs to detox from the chemo crap as well as your body. Every day I felt better like a fog was lifting and I was becoming more my new self again. Around 3 weeks I started to feel stronger and more relaxed. And as tessu said the neuropathy eases.
Welcome to jojo. I'm also a philly gal.
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hey y'all! I took December off from everything after finishing chemo November 16th. I basically slept through December. I've done 10 out of 36 zaps of rads. It's a pain but nowhere near as bad as chemo. I go and see the BS next week for a checkup. I hope everyone is hanging in there and doing well.
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Welcome Jojo. I hope you are recovering well from your ooph.
Tessu, my taste and smell are slowly recovering. I hadn't even realized how bad my sense of smell had gotten until I recently started noticing smells. I get a a wonderful whiff of something every know and then. For cooking I still wouldn't dare to season the food by taste. I have to either use a measured amount or have my husband taste test. Recently fruit, especially fresh pineapple, is tasting really good!
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thank you twiggy ... The ooph was very easy compared to chemo
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Hi, AnnieB43! Glad to hear you're doing so well! We've been wondering about you!
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Today I made and ate a simple fresh lettuce-cuke-tomato salad and it was heavenly!!! Today is one day earlier than oncology gave permission, but after months of only cooked-to-death veggies, I couldn't stand waiting anymore!
Also, today I re-started the neck, back, and core muscle-strengthening exercises that I got from my physical therapist a year ago. I had to start at the very first level (of four), and couldn't do less than half the reps, but at least I started. And I did the 30 min. of light pedaling on our exercise bike that my cardiologist prescribed. If that doesn't help me sleep tonight, nothing will. Cancer wrecked the h*ll out of my body, but I WILL get it back. Period. It'll just take awhile..
Oh -- the salad was my reward for starting my physical post-mastectomy post-chemo rehab
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I would think chocolate cake would be a better reward, tessu.
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Tessu - Congratulations on starting your workout routine! And that half hour on your exercise bike will pay enormous dividends.
Rewarding yourself was very shrewd. I'm rooting for you - keep updating us.
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hi ladies! I haven't had time to read all these, but wishing you all a peaceful Saturday.
MNLisa,
my MO says no benefit to tamoxifen during rads as to the studies he has read. I start tamoxifen right after rads until my ooph. Xo!
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Shopgal, thanks for the words of encouragement. I'm just feeling impatient and anxious to get past feeling so awful all the time. Three weeks sounds like forever at this point, but I know it really isn't.
It IS good to hear from those who are starting to feel better now. Gives me hope!
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5 out of 8 infusions done, and I still have about 1/3 of my hair left, stuck at buzz cut level. I think it's because I take Alive women's energy and saw it has 325 mcg of biotin, 108% daily value. This stuff is amazing. It's chalked min 100% of everything you need. I honestly think that's why I don't have fatigue and other SEs as the only thing that got me so far is nausea.
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Jojo0529 Hi I read your posts on the other threads. Quite an experience you have had. We had surgery about the same time. I am still waiting anxiously to get rid of my drains. I am also jelous because it sounds like you had your oophrectomy orthoscopically with your implants. I had to go open abdominal .....ECK its ok but it will be awhile before I do crunches.
Minnesota: did I miss where it said you were done with Chemo?
Ahh I must have missed some awesome ladies finishing up!!! Got to go back and read more thoroughly.
I know everyone is trying to keep jobs, kids,pets, life going through this whole boondogle. Can I brag about two things? Rocking crew cut lookin good. I am ditching the wigs. I look bada$$ . I think I am 9 weeks PFC but it looks about like when I had it buzzed right before it fell out. I hate looking in the mirror but I think I am just going to own this and take it out on the town.
Also my mom is here pampering me and taking care of me for awhile longer so I can recover. She is such a good cook and I can actually taste it!!! ahhh never new how good food could taste.
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Can I just say that I shocked myself when I saw my picture, bald, with one of my twins on a horse today. Melodie, I get that. I could almost forget, but... Yup, still bald.
I'm getting double dosed with steroids before my FC, starting in morning. Have some mild neuropathy in my feet that feels a little like frost bite without the pain, but my cold is over, praise God. Soooooo hopeful this happens on Monday. Going to let my girls ring the bell.
Love you all!
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artista, my hair is super thin but the remaining quarter or so keeps growing too. It looks so strange, I'm debating shaving it, but I figure at this point, meh... Just going to wait it out. I was told it would all go with Taxol, but I still have some eyebrows too (but no lashes)
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I have several strands that are longer than others. Weird because they were the same buzzed length. The white ones seems kinkier. I already have curly/wavy hair so this will be interesting, if I get enough back to actually sport a 'do.
I'm amazed how much heat is emitted from our balding heads. I wear a cap and even though it's cold out, it's very warm underneath. I take it off and instantly I am so much cooler and more comfy.
I still have over 1/2 my eyelashes and most of my eyebrows but I also have 3 more Taxoteres to go. Anyone know if rads makes you lose hair anywhere or is it just chemo?
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Hi to all! Welcome JoJo. I have my consult with doc for ooph /hysterectomy on Monday. Praying for the orthoscopic surgery. Does anyone know If having had a diep might mean the orthoscopic won't work? That's my worry. Exercise- may I ask why you had to have the open abdominal?
Also would like advice on removal of ovaries or the whole shooting match. MO suggests also removing the uterus because down the road I may take tamoxifen and that drug creates a higher risk for uterine cancer. I believe she plans to put me on Femara post surgery though.
Love hearing everyone's hair stories. I now have dark stubble/head whiskers. No white fuzzy stuff. Trying to be patient. I also have some longer hairs at my temples. My DH says perhaps I can do a comb over when they get longer. Ha!
Hot flashes are a real downer. Jo Jo- what has your experience been with flashes post ooph?
Cajun-- so happy you are so close to ending the bell.
Tessu - you have inspired me to exercise. I also need to workbook my core. Can you share your work out regime?
Minus 30 below zero windchill in MPLS tonight. Yikes!!!! MNLisa - hope you are staying warm!!
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Shelly I pm'ed you but I would not have had the surgery had it not been for a strong family history and the PALB2 Gene. It was an agonizing decision for me and very permanent. In the end I felt that my risk for gynecological cancer was high and my MO really wanted me on AI inhibitors. Open abdominal wasn't as bad as I thought it would be but yes IMHO always go for the easier faster recovery with a surgery if you can.
Artisita: You go girl.. Hanging tough!
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Shelly: I have cervical spine disease with nerve root compression x 2 despite an op in '06, plus newer lumbar spine problems that were being worked up when I found the breast lump. You might need something more rigorous? But basically everything is supposed to be 30 reps each side eventually; I could only do ten. Level 1 has head raises (lie on back, double your chin, raise head 1cm for 5 seconds, relax, repeat); foot dips on your back (thighs up, knees 90 degrees, keep entire back"glued" to the floor while slowly dipping first one then other foot almost to floor); situps with legs bent, feet on floor, hands on ears, neck relaxed, sit up slowly so armpit goes twds opposite knee; thoracic spine curls (lie on side w knees bent to stabilize, hands on ears, slowly rotate upper body twds floor; arm lifts: standing with 1kg hand weights, lift straight arms out to side then down; also slow lunges with the hand weights. I'm afraid to do some of the other arm and upper body stuff because I still have pain and limited motion from the mastectomy. If at all possible, see a physical therapist for exercises best for your body
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Exercise - Thanks for your question re my last chemo. I've had 9/12 weekly Taxol treatments. Last week MO said she would be okay if I stopped at 9 or 10 treatments due to neuropathy. (Dosage for last two infusions has been decreased by 15%.)
If neuropathy does not get worse today/tomorrow, I'll have #10 Tuesday. Treatments 11 and 12 will be "wait and see." I can still do all everyday activities, although the numbness in fingers, feet and mouth (!) are getting quite uncomfortable. I wouldn't want to live with permanent neuropathy much worse than this. But of course I'd like to get 12 Taxol treatments in before surgery if I can.
Shelly - Thanks for your thoughts - we're in the deep freeze until Tuesday up here as well! Current temp:
(That's -30 Celsius for you in the rest of the world.)
I love hearing everyone's hair stories! White fuzz is growing into my previously bald spaces. I'm down to half my eyelashes and a couple brave eyebrow hairs, so it's exciting to have anything positive happening. We're gonna make it ladies!
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Thanks for the inspiration Tessu! I findweekly taxol is catching up with me, very tired, my labs show I am anemic. But I'm going to drag my butt to the gym this morning in this wretched -15 degree weather. Here I go.....
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Thanks for all the great advice on taking Biotin, 3000 MG. I am going to increase my dose for sure.
Minn Lisa, -26 is WAY too cold! It's a balmy 36 here in Nc and snowing! Just got an inch and that's plenty!
Lisa please keep us posted about Taxol. I have 4 more treatments but sure do hate to think the. Neuropathy could get worse.
Welcome joJo! You will love our group. I am so glad to hear most everyone wants to keep in touch. We now know each other and certainly can understand what we have all been through. I so value my warrior sisters on this site!
Excercise has been my savior. Even though I wear out too soon I make certain to do some yoga and stretches everyday. Walking brings me peace and a clear (sorta!) head!
\Hang in there dear friends, we have all progressed so far and will make it to that bright light at the end of of th chemo tunnel
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here2win: The only reason I've been able to start exercising again is that I've finished the hard chemo infusions and am two days short of 3 weeks PFC! During chemo I could hardly walk my dog, actually could not the first week post dose the last three times.
So please nobody feel bad for feeling too crappy and weak to move during chemo! You will start to feel better after the last dose
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