Starting Chemo October 2018
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ask and you shall recieve... lol. Soooo. I am done with rads. Well, I quit rads after all treatment minus 3 of 4 boosters. To my defense, I was REALLY fried. Met with my mo last Thursday and told him I was quitting. He didnt seem too alarmed. But, I said "so, can you just email them and let them know?". No go...he made me go down and tell them myself. Lol. But, lemme back up. Had my appt with mo and this is where I'm at. He said, basically, start tamoxafin in 10 days to give me time to recover from rads. Also, plans on me doing them for about 6 months then switch to AI. Havent had period since the month before I started chemo. Coincidence? But, he wants me to be a year without before I switch over to be sure even though labs show postmenopause. Crazy! Oh, and funny Segway. The hospital I go to has pics on the elevators of "success stories". So, after I go through all my million questions I end with "how do I get on the elevator". He proceeds to give me directions. I explain "no, I've been through alot of shit...I believe my pic should be up there!" We both laugh. But he did say he qouks nominate me. Lol (doubt it!). Ok, so fast forward. I go downstairs and meet with four people who try to talk me into finishing rads. After a long conversation, I finally convince them they are wasting their breath. Oh, and my RO was out of town. Si...I leave. The nurse did give me some bandages to help with my "Burns". (Not to freak anyone out...rads are doable). Now, I've been using these bandages but seem to be getting worse (still doable). So, i call this a.m.to see what I can do to help with the blisters i now have. So I call my doc about the blisters I have and to see what they suggest I do. Nurse says if I can come in she has this great bandaging she can put on me. Then she says, oh wait...ur allergic to sulfa so I'll have to use this other kind. I say, ok so is the grey foam stuff. She says...no that's the stuff you cant use cause of your allergy to sulfa. I say...oh cool, that's the stuff the other nurse gave me last week that I've fn been using! I've had hives and thought it was from different laundry soap! I'm soooooo fn pissed! And I'm not like benadryl allergic, I'm go to the ER allergic. Thank God it was just a topical thing. I ask her to have my ro call me asap. Hours go by...no call. I email...no call. Finally, I call my mo. He calls me back within 30 minutes. Says, make sure u answer phone, I'm gonna have surgical team call you. They call me immediately. Short version...she walks me through everything to do, calls and talks to pharmacist while I'm on the phone explaining that I was given something I'm allergic to and has them set aside everything I need to treat myself at home (she did want me to come see her but I couldn't make it there by end of business day...ugh). I picked it all up tonight, and am hopeful itll all work. Oh...and never even heard back from RO!!! Wtf????
Glad u asked rabbit? Haha good news is, aside from this blister bs...I am done! No more scans, blood tests etc. I check in again in August for my annual mammogram and put this all behind me!
As far as patrice. Shes home recovering from surgery. I was gonna give her a bit and check in. As we all know, a little reprieve can be good for the soul so figured that's what she doing:) but, last time we spoke...she was doing well and in good spirits
Finally...I had a big "fu cancer...I win" bbq this weekend. It was a blast and saw some people I haven't seen in over 15 years! I'll attach some pics! Please, all, look me up on fb. (Casey Axton Glaspey)Would love to keep in touch beyond this "hiccup" in our lives! Coukdnt have done it without you ALL! 😘😘😘
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Notgivingup, how are you feeling today? Did the fluids help at all?
Casey, good to hear from you. The party looks fun, and I LOVE your hair! I would be so upset if my RO treated me like yours. And for a nurse to give you something you're allergic to? Unacceptable! Thanks for the update on Patrice.
For anyone on FB, feel free to add me. Jillian Rohde. I don't post many cancer details there, but it's nice to put a face to a name a keep up with non-cancer related life events!
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Hi Fritz,
The fluids seemed to help. The steriods helped me eat last night. So far I'm doing ok. Trying to rest and hydrate. I will send you a friend request. My name is Kim Yannotti. That is for anyone who wants to send me a friend request. I share mpre info here than I do on Facebook. Then again you all get it.
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I'm going against my hatred of facebook and reactivating my account
If you see a lady named Samantha add you, its me If any of you ladies want me to add you on facebook, just PM me and we'll make it happen 0 -
I would like to connect (stay connected) through FB. If you see a friend request from Felicia it is me. I have not shared my BC diagnosis on FB. I hope to keep it that way for now. I look forward to seeing you there. If you would like to connect with me, PM me and we will trade info. You have all come to mean a lot to me!
F
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hi everyone! I love that we are all trading contact information. It really feels like we are all moving on and it’s such a wonderful feeling! As many know, I’ve kept news of my diagnosis to only my immediate family and mom. So I’ve created a “dummy” Facebook page that I use for bc related stuff. My “name” on Facebook is “April Plume.” Once we all get connected, let’s see if we can start a private group on there so we could share more efficiently. Would be so much fun!
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I’m creating a group called “we beat mountain lions!” Once you get on fb, look for it and see if it shows up.
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A private group is a great idea
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I think a private group would be great.
It's been a good day - riding the steroid high. I'll crash tomorrow but that's OK,. To be expected. I'll see the RO on the 6th and find out what's what for RADs. I won't start for four to six weeks. I wonder if the skin toxicity will delay starting. Right now I really don't care.
Annie
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I made it through the surgery pretty handily. The nurse call me tough because I haven’t had to ask for pain meds. I stayed over one night, came home around 5:00 this afternoon. I think the ball thing is keeping the pain level low. The drains are a pain in the butt, the nurses showed my husband how to take care of the drains. He’s doing a good job so far, especially for a guy who hates icky stuff!
They think they got all of the cancer, but won’t know for sure until the pathology comes back
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Doris glad to hear from you! Good to know it all went well and that they think they got it all! Rest up!
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Annie- I tried to find you on Facebook. There are many Annie Roberts.
Doris- glad you are doing well.
I invited Casey to our Facebook group.
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It's been amazing to "see" alot of you
I literally cried seeing the faces tied with all we have been through...some amazingly strong beautiful women out there!Annie, I see RO on the 8th, I'll be starting rads around the same time as you, depending on how my healing goes, so far its healing well! I sent you private message with link to my profile, that way you can add me, I think I found the right Annie on facebook but not positive so thought I'd just give mine so i don't try and friend the wrong one!
Just think your last steriod crash...oh yippy! Doris, so glad your doing well, the drains really are the worst part of it, once those come out you'll feel alot better! I just got my last drain out yesterday, felt awesome!!
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Hello all, sorry to be MIA for so long. I've been off work since surgery, it's easier to type on my computer in the office than on my tablet, but my Rabbit made me feel guilty so here I am... drains are out - best feeling ever!! I have a TE'and it is just plain weird. Got filled on Tuesday and can literally hear and feel the saline sloshing around in there. Pathology came back as great news, according to MO, I had an "amazing response." So, on to rads, ibrance, lupron and one more medication whose name escapes me. Docs are all super positive about treatment so far, I'm just not looking forward to what they call "life long maintenance." But, like every single aspect of this shit show, it is what it is, like it or not.
So very proud of you all, haven't we come so far together!!!! I have joined team mountain lion slayer on FB, please don't expect much from my FB self, i am generally a very private person who posts very very very infrequently on social media. I look forward to getting to know you as regular women living uneventful lives.
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Patrice I’m SO happy to hear you had an amazing response to chemo!!! TEs are super weird. Once they are filled more fully they stop sloshing and just feel like boulders on your chest. Fun fun!
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Can someone add me to the FB group? I don’t think I got an invite. Jillian Rohde. And I’ll probably delete my posts with my full name in a week or so so that future people looking through this thread don’t see it. So add me on FB if you haven’t already!
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Oh no! I'm going to lose all you lovely ladies so soon!
I haven't been on in forever because, as always, life and treatment just keep getting in the way. I see that you all are finding each other in a great supportive group on Facebook, and I'm incredibly happy for you.
I left FB back in 2016 and have stayed away due to data / privacy concerns, but I wish all of your wonderful women the very best!
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Could some one add me to the private group? I'm not sure how to tell you which Annie I am. My picture is my husband, granddaughters and myself doing funny faces by sticking our tongues out!
Doris - so glad to hear from you!! I was telling DH at lunch that I was worried about you. You are a tough chick!! I'm glad your doing ok.
Patrice - Thank goodness!! You have been in my thoughts and prayers.
I'll not type long. My eyes are about to jump out of the sockets the twitching is so bad. I'm really worried that all these drugs have damaged my eyesight.
Annie
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Antigone, I plan on still posting here too, for the sake of others starting the journey just now or in the future who might have a diagnosis similar to mine and for the sake of anyone who doesn't use facebook
I really hope your doing well, your another one who has been through so very much - how are you doing??Annie, my eyes were twitching machines until a few weeks out from last chemo, it was wild. I've been twitch free for a few weeks now. It really takes time to get outta your system. I am JUST NOW starting to get the beginning of eyebrows and my last chemo was March 14th. Might have to shave head a 3rd time to keep growth even as different parts of my head wake up. Middle of my head is just starting to really bud too...I see white/grey mixed with my very dark spikey hair...Ahhhh! I think when it really comes in alot more I may have to do some hair dying..too young to be white, lol
Patrice, your rabbit thanks you for the update
So happy about the great chemo response! I'm starting lupron and Arimidex shortly myself, have to take it minimally 10 yrs....curious what forced menopause is gonna feel like...I'll find out soon! PS...I've heard really good things about Ibrance. 0 -
Antigone! My sister in this journey! I have missed you. I will still post here. You're not getting rid of me that easily.
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I plan on posting here in the future. I still have no hair except for some fuzz & a few longer hairs, it silver & straight
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Antigone, I’m not going anywhere either! Still plan on posting here and keeping up with our original group of warriors.
Since we’re talking about hair, I have a full head. Surprisingly it came it pretty even. It’s a little less than a half an inch long and dark brown, but some places look a little silver. Hard to tell.
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Please keep posting here. There are so many who just follow and don't post.
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Sadlynew - I just saw that you completed rads at the end of April - congrats!
Fritz - How far along are you into rads?
Annie and Pom - I'm so sorry to hear about the neuropathy issues.
Are your teams offering you anything to help???Notgivingup- OMG, yes! The eyebrows and the lashes going after Taxol were when I *really* started feeling like I looked "sick." And people weren't kind about it. Grrr… Also, so glad to hear you've finished chemo!!! And, like I said, sisters. I was scheduled for 20 rads, as well. Though my RO just cut out the 4 boosts, so now I'm down to just the 16.
Rabbit -I'm so sorry your pathology wasn't what you were oping for. And I'm sorry that Xeloda won't offer as much benefit to you, but radiation and hormone treatments can and will definitely do great things for you.
Annie - No more taxol? WOOHOO!!! Does this mean you're done all together with chemo?
As for me, I've finished 5 of my 16 rads. I think next week I'm actually supposed to be meeting again with the trial team at the university to go over my paperwork and to find out which arm of the trial I'm in (*fingers crossed* that I end up in the arm with both nivomulab and xeloda). Once I'm finished with rads, I'll have ~ 3 weeks off before I start the trial.
I'm also still completely numb (which sucks). My surgeon said that she's never seen this before and has no idea why it happened, so she doesn't know when, or even if, feeling will return. *weeps* Now that all the swelling is gone, as well, I'm realizing that I might actually need some reconstructive surgery. The first surgery she did turned out great; the second one…not so much.
One of the other things I've had to make myself realize lately is that, even though I'm feeling A LOT more like the old me, I can't ACT like the old me. For instance, because I was feeling better this week, I tried to go into the office twice this week to get some facetime with my team and the rest of the staff before I disappear again for the trial (I normally worked ~ 2-3 days from home for PTSD reasons before diagnosis). Those two days were a mistake. I was fine AT work, but I got home last night at collapsed. Like, literally broke down collapsed from the fatigue.Lesson? Just because you FEEL better doesn't mean you ARE better. Be gentle with yourself for awhile - you just spent months having your body tortured by disease and poisons. It's okay to no be at 100% for awhile. It's probably going to take awhile for that to sink in for me. I can be stubborn. *sigh*
Oh, but I have HAIR! It's not my hair (my hair before was past my bra strap and naturally red - this is about 1.5" long and dark blonde/light brown w/ A LOT of grey - but it's hair! And I have my brows and lashes back. *happy dance*
Anyway, glad to see a lot of you will still be posting here, and I'll try to stop by more often.
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Good Morning everyone! This last THP really kicked my tail. I have A/C mentality - please don't need to get up for anything - it takes to much energy and I just don't have it. How many are doing HP after we finish T? I'm really achy - like someone is trying to twist my bones in different directions. I have HP until next February. I see the RO for my initial appointment on Monday. Between my numb feet - and no, the only thing my MO has suggested is B vitamins, and the fatigue, I am house bound for the next few days.
Antigone - I know what you mean about feeling like you can do things then crashing. I want to do so many things. I'm a painter. But just the thought of getting out everything is exhausting.
Doris - How are you?
Rabbit - no more drains!!! So much more comfortable!
How long after T did your hair take to start coming in? Does HP affect hair growth?
Will we ever heal?
Annie
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Annie - re: hair, 4 weeks after my last T infusion I had some fuzz, and 8 weeks after I had a *very* sparse layer of new "hair," plus my lashes and brows had *just* started regrowing (I had tiny little nubbs of lashes, and a five o'clock shadow where my brows should be).
By 11 weeks, I was able to go out without a hat (mainly because I'm stubborn and didn't care what people thought), and my lashes and brows were back).
I hit 16 weeks past chemo yesterday, and I have a full head of hair (it took awhile for the top - especially the front top - to fill in, and the sides at the front are *still* a little thin). My lashes are back as long as before, albeit thinner/fewer than I remember, and my brows are back pretty much as I remember (I never had those gorgeous thick brows that are all the rage now).
Oh, and most of the KP has disappeared as well - FINALLY! The vellus hair on my face I finally gave up waiting for it to go away and got myself a dermaplaning session for my birthday - THAT made me feel a lot more like me.
FWIW, I'm taking 5000mcg of biotin a day (2500mcg morning and night) and 1200mcg fish oil, as recommended by my dermatologist. She told me if the frontal sides of my hair don't start coming in better in the next month or so, we can start my back on my spironolactone (I've been on it before for TE).
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Antigone - thanks for the information. I will ask my MO if I can take biotin and fish oil. Since I'm on blood thinners, I have to ask about everything. After two naps, I'm feeling a little better!
Annie
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Good Evening!
I am feeling pretty good since hydration. I do get tired easily, but hopefully it will be better soon. I am having my first drink since February 19th. I am really enjoying it. I hope everyone is doing well!
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Antigone I’m about a week ahead of you in rads. I have #11 today.
Notgivingup yay for feeling better! I hope you really enjoyed that drink!!
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Met my RO today and all the staff. We were there three hours! Another man I just met touching my breast. Simulation next Tuesday and then I'll start rads as soon as insurance clears. I will have 33 treatments - 28 plus 5 boost.
Hope everyone is feeling well. At least I had some energy today. They asked about my social and emotional support. I, of course, bragged on DH, a sister and a friend, but I told them this group was one of my best sources of support. Thanks to all of you!
Annie
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