Chemo starting October 2017
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Hi beautiful October ladies. It's hard to believe it is now June and we all have come so far. I want to say that I could not have made it without being on this site. All of you ladies are absolutely special and wonderful individuals. Thank you so so much. I just had another surgery to correct the fat necrosis in my reconstructed breast, all went well. Still need more surgeries but I'm adjusting to my odd shaped breasts and will move on like before. Six months since last chemo and have salt n pepper wavy hair. My hairdresser who is also a friend said we will dye it as soon as it gets a little longer. Seems to be taking a long time to grow...but it is hair...right! Still on Herception every 3 weeks so still visiting all my nurse friends, which helps a lot. Agatha, I too am single and understand doing this mostly alone. I have great friends, but they really can't comprehend like you girls can. So sorry to hear of your job loss. It's not fair but when God closes one door he opens a much better one, so have faith. Please PM me or post on here the Go Fund Me page, I looked but couldn't find AgathaNYC, lol . Would love to help out even if in a small way. Good luck girls with moving forward, even small steps each day, move us closer to being better after this horrible ordeal.
a
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Agatha- so sorry that you are going through this. Going through cancer treatment is hard enough but to have financial worries on top of it is so stressful! Please let us know the go fund me page as I would love to help!
2brandy- you look great! Love the waves. I decided to get my hair colored as I had the salt and pepper as well. I went to a different hair salon then the one I normally go to as this one only uses organic color. I think the hairdresser went a little to dark. I am not used to it. Oh well just happy to have hair!
Happy almost summer
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Hi, Tri. Yeah, the work/finances thing is hard. It's the first time I've ever been laid off and it feels awful. I'm lucky I've gotten through so many years without ever losing a job, but the timing stinks for it to happen now.
Here's a link to my GoFundMe campaign: http://gf.me/u/i8ycnz Take a look if for no other reason than to find out my real first name ;-) Please don't feel like you should contribute. All of you on this thread have helped me so much since October. You've been there for me through this whole thing. The emotional support was especially helpful to me since I'm single/no kids. However, if you wanted to share it on Facebook or something that would be really generous of you.
Tomorrow is my 4 month follow-up with my MO. I can't believe it's been that long since I had my last chemo infusion! I'm not quite sure what the appointment is going to consist of. They didn't order any blood to be drawn before hand. I guess just a physical look-see and talk about lingering side effects? Has anyone had their first "x months after chemo" follow up with their MO?
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Hi, guys. Me again. I had my first post-treatment scare on Friday. (but everything is OK!) What I thought was a seroma in the area where I had my lumpectomy was definitely getting larger and harder and a little tender. So, when I went for my routine 4 month followup appointment I just figured the MO would refer me to the BS to get it checked out if it got worse. But no, she sent me down to get an ultrasound right then, and the head of the radiology dept came in and did the ultrasound herself. Everything is fine. It's a lot of necrotic fat tissue mixed in with fluid. Nothing serious, but I was sweating it for about a half hour there. It can't be drained and it can't be surgically removed. Hopefully it will reabsorb soon. I have to go back for another ultrasound and check up with them in 3 months. I did really want the lumpectomy over a mastectomy, and I'm still glad I chose it, but now that I've already had to have my first scan to see what's going on in my breast I truly understand the appeal of MX.
I'm off to a breast cancer survivor group this afternoon. I'm finding it really helpful. Friday I'm going to an all day conference on Cancer and Careers. I'm so grateful there is so much support out there for our "new normal".
Hope you all have a great week!
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Oh Agatha (actually your real name is even prettier), what a scary appointment! Unfortunately, many of us will probably face the same fearful appointments. As a cancer survivor, any ache, pain or bump is going to be...let's see if the cancer is back unlike the regular population who just get brushed off as its nothing major.
Sorry about your job. That stinks! We are living paycheck to paycheck these days with all these medical bills. My out of pocket max is $7500 and of course hit it 2 years in a row now. Our payment plans will only go out 18 months. My husband is really pressuring me to get my exchange surgery done before the end of the year, which I want, but don't have a lot of control over. Each cycle of Xeloda is $125 out of pocket too.
I am on my second off week of Xeloda and like expected, my feet are really tender to walk on and having some digestive issues. So far it really hasn't been too bad but like IV chemo I expected it to be cumulative and more intense each cycle.
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Hi, Jenn. Would cooling slippers help your feet? Or would the cold aggravate your already sensitive feet.? I have these awesome booties and slip on gel slippers that I used in chemo. I'd love to send them to you. DM me your address!
The bills suck for so many of us. It didn't help we started treatment at the end of one year and continued into the next. I am working with a social worker at the hospital to see what help is available. They have more resources than the financial department. The stress of the financial situation is not helpful to our healing. It's crazy.
How's your hair coming. Mine's starting to turn into a cute pixie. I'll post a new photo soon.
Love and miss you all!!
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Hi Everyone!
I’ve been reading and lurking and just haven’t had real computer time to weigh in. I need a real keyboard, not my phone...
I am so sorry several of you have financial issues on top of the health hell we’ve gone through. I go back to see my breast surgeon in early July and I’m taking Femara daily but otherwise all is well...so far. I pray constantly that nothing more will happen; I haven’t yet figured out how I’d handle it.
I’m so glad to hear/see that you all have HAIR!! Mine is slowly creeping back but no way can I ditch the wig just yet. And not happy about it, it’s getting hot and it’s itchy.
There’s an extreme to everything!
I have to add one other thing, and this helps me keep my own ordeal in perspective. A very dear friend was just diagnosed with stage IV/advanced lung cancer. He found out when his arm broke. It’s spread to his bones, ribs, shoulder and adrenal glands. Next friend just had a double mastectomy and will start chemo on Friday. Co-worker is #3, she found out last week that she’s triple negative, she’s 44, single parent of 2 kids in high school and college...and barely has health insurance of her own.
It’s all around! I’m so thankful for this group, even though I joined late and haven’t contributed much lately it’s such a comfort to read how caring and supportive this group is...you’re all wonderful. And I’m sorry we don’t live close, I’d love to meet you all in person and tell you how much you’ve all helped.
Hang in there everyone, you’re all such a wonderful inspiration!!0 -
Good morning all, dumb question time...
Why does my hair insist on sticking straight up instead of lying down, like normal hair?? I can tell it’s growing a tiny bit because I had it colored two weeks ago and I’m beginning to see silver roots. But it refuses to do anything but stick out, and it’s very very curly...curlier than ever before.
Shocking how quickly this has now become the most burning question of my recovery, but geeze folks, I look like I have my fingers in a light socket 😳
Has anyone else had the same problem???0 -
Agatha, so sorry about your financial issues. I'm very blessed to have had great insurance for most of my cancer treatment. We got a new policy on April 1st, which is not nearly as good, but so far we've been able to manage the 2 years of co-payments and deductibles. I'll be sure to contribute to your GoFundMe account. Best of luck getting a new job. And BTW I wouldn't have answered the disability question as a Yes unless I felt that I was disabled by it. I'm not even sure it's legal for them to ask such a thing! Good grief.
Tewks, my hair sticks up, too. I use gel on it every day or it sticks straight up. I figure when it gets long enough for gravity to work, it'll lay flat again. Below is the latest photo. I'd say it's about 2 inches long now... My last chemo was 2/14, so I'm a little over 4 months from last chemo.
My husband and I got back on Sunday from our trip to Italy. I cannot tell you how wonderful it was, not only because of the sites (which were magnificent) but because we met a whole bunch of lovely new friends, and none of them knew that I had cancer. As blessed as I was by my family and friends who surrounded me in my time of need, it's kind of a relief to just go somewhere and not be the cancer lady.
May you all have a wonderful week.
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Wow Lisa!!! That’s all I can say...besides your hair looks amazing!!! You look beautiful, and no one will ever know...
I’m so happy you had a great trip, and congratulations!0 -
Tewks - my hair is in a weird phase where there are little wisps curling up at the ends. i've been using a lot of product to keep it down. I'm not ready for a haircut yet.
Lisa - WOW! Your hair looks amazing. No wonder no one knew in Italy! Glad you had a good time. And thanks for checking out my GoFundMe :-)
I'm going to a day-long conference on cancer and careers tomorrow. I intend to ask a lot of questions about how to fill-out that question on applications, how much to tell prospective employers, if there's any recourse with the way I was let go, etc. (This new world of on-line resume submission and computerized applications is new to me.)
Earlier this week I went to a survivor event at the hospital. I'm really glad I went. They are putting more resources toward survivorship. Seems like they realize that the physical and psychological effects last far longer after treatment than they used to think. Maybe it's the happy result of more people surviving cancer.
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I have been going without hats for about a week and a half now. Still short but last weekend I overhead a lady say she almost cut her hair like mine. I know this hair thing is trivial compared to what we have gone through, to me it’s just getting to the point of looking normal. As if I choose this hair length. I do use gel but still have some crazy white hairs that do there own thing.
Tomorrow morning is my 3 week bloodwork and office visit. I still get anxiety over going there. I don’t know if that will ever chsnge
Those who have been through survivorship meeting. I would love to hear what is recommended. Vitamins, diet, exercise or other lifestyle changes?
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Okay, maybe it's the horrible humidity in NYC this week, but my hair looks like a grey poodle!!
So not flattering. If it were straight it would such a good length :-)
(life is good if I am complaining about curly hair and not my dumb neuropathy!)
Hope all is well with you guys.
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oh Agatha, you make me laugh!! And believe me I’m laughing with you, not at you!! My hair just keeps looking stupider and stupider...remember I’m in NJ so I get your weather about 30 minutes before you...and the storms and humidity today just about did me in!! We finally finally finally opened our pool last week but it’s almost too hot to sit outside now. Would you like to come join us? Or maybe meet for lunch halfway or something? You could train out and I’ll pick you up...and I promise I’m not crazy Or anything. We could compare poodle heads in person!
I hope everyone else is coping and continuing to recover. I’m trying to get accustomed to the new normal...a long long way from a year ago when I’d just had surgery.
How’s everyone else doing ?? Please check in !!
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Happy 4th of July!
I posted my hair update on Instagram yesterday. May 2nd compared to July 3rd. It’s nice not having to think about what to cover my head with and gotta admit its fast getting ready. But still want my long hair back.
Day 10, Cycle 3 of Xeloda and like clockwork today is the day my feet get tender to walk on until day 16. I just roll with it.
I notice too I don’t deal with the heat well. I don’t sweat. Plus side is I don’t need deodorant. Not sure if chemopause or the xeloda. I don’t let it stop me, just limit the time outside in the heat of midday.
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Looking good Jennifer!
Tewks- if you guys are getting together let me know! I'm a Jersey girl too! lol
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TriLady absolutely! I don’t know what or when we’d plan but you’ll definitely be a part of whatever group gets together. If I remember correctly you’re south of me? I’m in Hunterdon County, only an hour out of NYC.
Agatha, I followed the link to your Clog and I really do wish I’d done the same thing. You have your journey on paper and 75% of what I went through I’ll never ever remember clearly enough now to write about it. It sounds like you have wonderful and caring neighbors; what a huge help they must be. And I’m intrigued about your job loss...surely it wasn’t because of BC was it? (I’d think that’s illegal.) Or did they eliminate your job in your absence? Sadly that’s what often occurs.
I see my BS on Tuesday, try not to think about it. I think I strained my scar area too much(trimming forsythia) and a lot of the underarm numbness is back. It’s been a year, wont those nerves ever heal???
BTW to everyone, have you all gone public with your BC? We told only family and a few very close friends until now when I’m starting to tell people, one by one, if I think they’ll have a decent reaction. And what’s surprising me is the ho-hum response I’m getting. More than a few people have said something like, oh you too?? Gee you look great, how do you feel, congratulations, etc. and I guess I’m a little deflated cuz I’m expecting at least a little shock from someone now and then. So, my point being that BC must be so much more common nowadays than I ever realized. We’re diagnosed much earlier, treatment is significantly better and more effective, and we’re all surviving much longer. I’m feeling more relaxed about living with it, but I guess there’s a lot of us out there.
And Agatha, the Joan Lunden video is very interesting! Thanks for the link, you should all read her Clog. One question tho: which wig looks awful???
Thanks for the chat everyone, I do hope you’re all doing well and continue to heal.
If you have a spare minute please say a prayer or three for my friend with lung cancer. It looks like he’s not going to ever be going back home, and it’s so sad. Just four weeks ago we were partying on their deck and now he barely knows who we are.
Hugs to you all!!0 -
Wow it is so awesome to see and hear how well everyone is doing! You all look great and hair is back!
I wondered if anyone started the Phase 3 study of Abemaciclib combined with standard Ajuvant Endocrine Therapy? This study is for Stage III with high risk node Positive, Early stage, HR Positive, HER Negative. Helps prevent recurrences with better results than AEtherapy alone. My oncologist asked if I would be interested in participating in the study. I want learn more about the benefits and side effects before I commit. Just wondering if anyone out there can give me some input or share your experience As always, thanks so much for sharing and continue to improve
The study is by Eli Lilly and Company
Protocol # monarchE: 13Y-MC-JPCF
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Forgot how to login. Needed to make a new profile. Just dropping in to say hello. Lots of memories going through this season. Getting ready for profolactic mastectomy next week. Dealing with the daily aches and pains of post chemo/tamox body. Think of you all often.
Sara
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Hi Sara! Nice to see you. Well wishes for your surgery coming up.
I am still plugging along with Xeloda but its been getting harder with each round. More body aches and foot pain. I have a week every 3 weeks where I can barely walk or stand. I have completed 5 of the 8 rounds though, so seeing the light at the end of the tunnel. Planning on getting these rock hard expander foobs out around Thanksgiving and my implants in. Hopefully that will be the last surgery I will ever have to have!
I got my hair trimmed for the first time today. Just a little clean up especially in the back neckline.
Looked into Livestrong but my Y's don't have the program. I am set to start a similar program with the hospital system in January.
I find anxiety creeping in here and there, as I think of next month. Actually a little over a week from now when all this roller coaster started. Not sure how to deal or handle next month other than a day at a time.
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Hi Sara! I decided to pop on to look up info on the new meds I'm starting now that my second surgery is over and was happy to see an update from you on our Oct 17 starting chemo thread I feel like you and I joined this thread around the same time and I felt connected to you through those months of chemo. By now, your surgery is over and I hope you are recovering well. It has taken me a few weeks - mine was a second removal of another large amount of tissue to try to avoid a full mastectomy, but my doctor said it was basically a mini-mastectomy. This is such a long road!
Anyway, I took my first Letrozole tonight... am scheduled for Zometa infusion Oct. 2, and have procrastinated getting radiation scheduled (I really don't want to do it!).
Wishing you and everyone else here healing, health, happiness and security!
Lea
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Hi violalia, and everyone else from the last two years...are we all present and accounted for? It's quite ironic to hear from you just now; my husband told me getting back into therapy would be a good idea or at least talking to all of you again. And just like a friend who's come calling on the invalid for tea and a chat, well here you are, magically appearing. My first mammogram On my well boob(so far) is scheduled for mid October and already I'm having little panic attacks. Make that medium.
Good news is that I have hair!! Happy Dance!!! I have very curly hair, but it's hair and it's definitely growing. It's been trimmed, keratined, colored and it did t fall out so that's a plus I guess.
Also good is that I walk 17 times around my pool deck to equal a mile. The tough part is that I walk 17 times around my pool deck.
We're eating much much better. Weight watchers, one bottle of wine per week instead of per day, no red meat, counting those little bugger points, getting creative (read desperate) and finally at the end of 11 days I'm down a whopping 4 lbs. whoop de doo...
Seriously, it's the panicked thoughts that that just might be the best I will have had for a while and there's another year of booby and body torture in my future.
Lots of yes or no decisions to be made.
And I see I cant get rid of that dumb graphic up above, whatever it is. Wait...it’s gone!!
Please let's start this thread again? Pick up where we left off over the summer? Aside from continued and very slowly improving fatigue, I really don't have much going on. Yet. I take my letrozole daily, shooting for 11am-2pm spot, haven't missed one so far. I'm almost done with gabapentin - messes up my memory at work - not good. And will lean on the good old occasional Xanax and naproxen strictly as needed.
I'm sorry we didn't get together during summer but with the disgusting heat and humidity, no $$ to go anywhere and, worst of all, watching my best friend's husband lose his 6 week battle...it just didn't happen for us.
Stay tuned everyone?? Please??
And I sincerely hope you're all feeling well bodily, physically, emotionally, socially...family and friends and pets are plentiful. After this crappy journey we've just completed, life really should be pretty good from here on in...no??
Have a great weekend!
Linda
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Hi Everybody,
It was one year ago today that I went to my GP for my annual physical and she referred me to the Piper Breast Center where I was diagnosed with breast cancer. Now, 112 appointments, procedures and treatments later, I'm still fighting the battle.
Completed chemotherapy, physical therapy for lymphedema, double mastectomy with tissue expanders, radiation, and removal of failed tissue expanders. I'm still on Herceptin and Perjeta for the remainder of the year and have been taking letrozole for five months.
Breast reconstruction once my skin has fully healed from radiation which the PS says will be another six months.
Still not out of the woods and I'm very self conscious now about being flat. But I feel good, I'm back to work and will continue to fight the battle.
My hair is about 1 1/2" long and is a lovely shade of tiel. Have also done pink and navy.
I would love to hear an update on how others are doing. I love this group and miss you all.
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Hi warriors! It is so nice to hear from everyone! It sounds like we are all adjusting to our post chemo life in one way or another. Jennifer I am so glad you are almost done. Sounds like a long process but you are doing it! Sara- hope all went well with your surgery. Voilalia- glad you are recovered from surgery. You're right it is a long road! Tewks- great news losing weight! I enjoyed my summer too much and gained a little. Back to the grind. Simbobby- so glad you are feeling good! I am back to work after enjoying my summer off- I am a special ed teacher. I started school last week and feel great! My hair is coming along can't believe how curly it is! Haven't had curly hair like this since my 80's perm. I wish you all a wonderful, blessed rest of the year❤️
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Hello October ladies. Good to see each of you doing well. Mastectomy was uneventful. It's much easier without a broken leg!! I spent two weeks laying low and resting but I'm pretty much back to my routine now. Who's gone back to work? I plan to return half time (I'm a middle school vice principal) after Canadian thanksgiving. Would love to hear others experiences. How's tamoxifen treating everyone? And. Anyone have a prophylactic ovary removal?
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Hi Sara-- joyseeker-- and all you October chemo ladies! Not sure if you remember me, and hate that I haven't been on here since March.... but with it being October and all I decided it was time to check in. How is it a year?? I'm still not back to normal-- but getting there! I finished my 6TC rounds on Jan 30th. I then had a prophylactic oopherectomy (Sara you were asking if anyone elected to do such, and I'm happy to share more!) in February, started Anastrazole right after, then went to MDA in Houston for 6 weeks (I live in NC), to receive proton radiation therapy from mid-April through end of May.
Feeling stronger every day, and then set backs occur-- like a very high heart rate with any cardio that I didn't have even a month ago. Seeing oncological cardiologist this month for a work up. Anastrazole causing oodles of SEs, but just discovered acupuncture, and seeing tons of improvements even only after 2 sessions. I do my best to walk with joy in my heart every day, but fear creeps into my head now and again, and I have to beat it back down. I imagine it is the same for all of us amazingly strong ladies!
I wish you all the best, and am hoping everyone will post pictures of their Christmas trees again in December! Looking forward to returning here and celebrating many more Octobers together! Love to all! 😃💕🙏🏻 --Gin
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Happy October 3 Ladies! It sounds like everyone is doing well, adjusting to the end of treatments? I finally said goodby to my wigs and am now adjusting my schedule to accommodate the amount of time it takes to shampoo, dry, style, flat iron, etc., my hair! What a great problem to have, huh? I’d totally forgotten! I’m sure there have been a couple comments I haven’t heard but no one has said anything to me about my sudden hair change from wig to short other than to comment that I got my hair cut. Whew!!
I also am going to come right out and ask for good vibes from everyone on Tuesday, the 9th when I return to Fox Chase for my semi annual checkup and the first mammo since my diagnosis two years ago. To say I’m apprehensive is a wild and crazy understatement...terrified already is more like it.
Anyone else get crazy at mammo time?? It’s almost like PTSD. I might start Xanax all over again. I’d stopped almost all the meds over the summer except for the Femara and vitamins. My fingernails are long and strong but my toes still have a long long way to go and grow before looking close to normal. And I can tell now how much these last two years have aged me...I’m eating and sleeping and exercising very well, and I look really tired and like I’ve aged ten years. Stress, big time stress.
Compounding that stress is the sudden death of my best friend’s husband. He was diagnosed with stage IV lung cancer the start of June and was never stabilized enough for treatment. He died July 25. 71.
We’ll never know why he didn’t see a doctor until it was too late, but he didn’t. And he was one of my most solid rocks of support through my whole two years of treatment.
I really do hope everyone keeps in touch in the months to come. Your support and strength are so important!
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Hello fellow warriors. It's hard to believe that a year ago most of us started down the diagnosis, chemo and surgery roads. It has been and continues to be a long road but I'm finally seeing light at the end of the tunnel. I will finish my last Herception infusion this week and just finished my 3rd breast surgery and still have 1 more plus tattoo to go before I'm finished. I can't wait to get on the other side and start to feel normal again. I don't know about the rest of you but I feel I have aged 20 years through this whole ordeal. It sounds as if we are all getting to the final steps in this journey. Again, I can't tell you how you ladies were there for me in some of my darkest days and I wanted to say once again THANK YOU TO ALL YOU WONDERFUL GIRLS! Hang in there, post pictures of yourself and what's happening so we can all stay in touch. My hairdresser friend told me it was time to get outside my box and that my grey and white curly hair needed an update...Wow, blonde that's a bit much but it's risk taking time...girls.
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Well that’s a fun look! Here’s a hair pic - mine is really curly on top and very wavy on the back. I liked it when it first started to grow in close to my head, but it’s so poofy on top now and it’s not anything like I had before so I don’t quite know how to handle it.
I’ve just done #4 Rads of 35 today and am wondering how my skin will fare. Think I’m feeling the burn already, but maybe I’m just paranoid. Counting down every day (yet again, right?!)
Had my first Zometa infusion last week (the pic, actually) and I felt like I was in a car accident I hurt so much after. Anyone else getting Zometa or something similar to ward off bone mets?
I’m so happy to be able to come back to this thread and see some of you again.
Love and hugs!
Lea
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Today is my last day of active treatment. I have one more dose of Xeloda to take after dinner. Xeloda has been much harder than anticipated. It's torn up my feet and for the last 3 rounds I have not gotten a break. My feet have pretty much hurt for the last 2 months and look like a cheese grater was run over them. I have bought many lotions and worn boxes of band aids.
I meet with MO in 3 weeks and get blood work. Hoping I can really improve my red blood cells (gotten progressively worse on Xeloda) and healing of my feet before then. I was told by NP I will move to “surveillance" ...what a phase.
I will have my exchange surgery on December 4th
I am ready to dye my hair. At least cover the gray but don't know what to use. After cancer, worry about the chemicals. What's safe?
Miss having the support this group gave me. I haven't gone to any support groups, counseling and family support has pretty much gone away after BMX. I guess this is the new normal and finding myself again is the next goal.
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