Starting Chemo July 2019
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Jjpope1 - I'm sorry to hear you are having a rough go. I know that losing your hair can be emotionally charged, but I have heard that for some women as it falls out it causes headaches and discomfort. How long is your hair? Could it be a contributing factor? Remind me what your cocktail is? I'm glad you're better managing the nausea.
I'm off to chemo today at 11:30. Steroids completely screwed up my sleep. Finally fell asleep around 2:00 am and got a few restless hours in. Nerves have picked up, but not nearly as bad as the first go around.
I'm lucky that my work healthcare provider covered up to $1,000 for a wig(s). Can only imagine how difficult it is if you don't have adequate coverage or qualify for a free wig. I bought two online, each in the $250 /$350 range ONLY because I had coverage. I plan on rocking my bad ass self bald. In fact, went to a restaurant yesterday with no covering (gets too warm) and frankly, no one noticed.
Thinking of you all,even when I am not posting. I marvel at how incredibly strong we are and how proud I am of all of us.
😘
Sheree
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Sheree - love the no hair look, very becoming on you! Hope your treatment went okay today.
jjpope1 - so very sorry the migraine came back. That sucks! I had a whopper of one last night too.
Starr42 - sorry you're battling nausea and vomiting, I hope they've subsided and you are starting to feel a little better.
Victoria and flnana2 - sounds like you both had great nurses for your first treatment! I hope the Zofran and phenegan work well for you and manage the nausea.
Alden722 - how is your recovery going? Wishing you well!
I find it interesting that some of you are getting Neulasta immediately with treatments and some later when your wbc counts drop. Has anyone had to get treated for low rbc counts? Mine are starting to drop quickly. Port is still troublesome, but I’m learning to ignore it.
Wishing a good weekend for all!
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Finana2- I live in Maryland. It's a bummer that BCBS doesn't cover medical wigs in your state! Oncologists can manage other side effects like nausea, and hair loss is a side effect too
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Quick update.
My second cycle didn't go as smoothly as the first. As soon as the Taxotere started I had a reaction. My face, scalp and neck were flushed, I had shortness of breath and a medicinal smell (that may have been the cleaning solution used at the pod beside me). They stopped the Taxotere, flushed the line, and gave me Benadryl.
The test proceeded without incident. Now I am just groggy from the Benadryl. Likely going to sleep early.
Hope everyone else is doing okay.
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Fairydragonfly, the same thing happened to me on my first Taxol, and I passed out. After recovering, and plenty of Bendryl plus another steroid, we finished it slowly, without any further incident. Went home and slept. That night, I still had the extremely red face and took another Benadryl. I think I even took a Benadryl the next night, too.
FYI, I just finished #6 today, easily. I now take 40 mg prednisone the night before and they continue to ramp up the drip speed very slowly. So, it takes longer, but I don't have the bad reaction. I hope this puts your mind at ease about your future treatments. The worst side effect I have now is a dry mouth and no tastebuds. (I already had no hair from the AC treatments.)
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BAMR - Thank you. I hope this was the worst of it. I'm starting my Claritin tomorrow morning (joys of Grastofil) and took my sleeping pill tonight. I'm exhausted and just ready to sleep it off. I'm on dexamethasone 8 mg twice a day starting the day before chemo. Obviously my oncologist may change that before my next cycle.
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day 18 post first chemo of TCHP. Right on schedule my hair starting to fall out. My hair is ridiculously thick so I’ve probably lost 20% and it’s a normal persons thickness. I’m so chicken to shave it but obviously the shedding is a pain in the butt. I bought several wigs but can’t seem to settle on one I like. I need to take the plunge and shave it today but so scared. I work tomorrow so what if I can’t get the wig to look right? What if it falls off while I’m off no the train? Losing your hair is a real kick in the butt aftee having both boobs cut off!
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Dvhmouse, I hope your port is better. Mine is bruised and swollen but not bothersome.
fairydragonfly, I hope you got a great nights rest.. we all know how important that is.
Ocean breeze, I got the official denial from BC yesterday. It says while we don’t dispute the fact that you need the prosthesis, it isn’t covered under Florida Blue. Thanks a lot. The hospital my oncologist is with has their own wig center and they have offered me a way to get a free slightly used wig or a new one for 70% off so I’ll most likely go that way. Plus ACS gave me the $70 off for their site.
Rubydream, your thick hair may be giving you a few more days...most TCHP patients have been 15-16 days. I have thinner hair so probably won’t make it as long as you. I know how hard it will be to shave it off but your wig will look beautiful and no one will know. Plus, I have a friend that’s worn a wig in all types of windy weather and it’s never fallen off. Do you have a wig hugger for underneath your wig? They’re cheap and it may give you some extra confidence. Paula young wigs has them on sale right now.
Yesterday was my worst day so far...honestly, not too bad. Had mild stomach issues the first couple days. Yesterday, stomach ok but a horrible headache. Still going on this morning but less. Reminds me of a long ago hangover.I did go for a walk yesterday and am planning on that again today.
Hope everyone has a nice Sunday.
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finana2 thank you! I do not have a wig hugger! Thank you for that and the website info! I have a pile of wigs to return! I hope you are able to keep moving and walk today! So hard to remember this is all temporar
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Happy Sunday everyone. Wig coverage varies by state. Ain't that something. And if anyone would like me to rant about how its a bunch of BS that men can shave their heads and be the picture of health but a woman w/o hair is virtually scary- feel free to PM me anytime and I'll rant ! Damn patriarchy!
Day 5 after A/C #1 I am without energy, but also not feeling queasy enough to need the zofran so I'll take it as a big win.
I'm trying really hard to focus on the day and not think about my next treatment because that gives me all kinds of pointless anticipatory anxiety.
I hope everyone is having a wonderful day with lots of bits of joy and very little SE.
Early in the week I had my appointment with my genetic counselor and it did make me feel a bit better.- in regards to other cancers. (I'm BRCA -2)
-Victoria xoxo
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Is anyone else still getting their period on AC? Jeeeeeez! I was so happy to have my last one at the end of June and here we are again.
2019whatayear "And if anyone would like me to rant about how its a bunch of BS that men can shave their heads and be the picture of health but a woman w/o hair is virtually scary- feel free to PM me anytime and I'll rant ! Damn patriarchy!"
YES! I still have a short pixie cut, it's definitely thinning though. I'm avoiding getting my head shaved for the reasons you stated. I don't want people staring or pitying me. It will signal that I'm ill, even if I'm having a great day. Also, I have our Fresh Air kid arriving next Friday. I so wish my hair would hang in there til then as I don't want to scare him. He hasn't seen me since last summer.
Anyway, today was day 6 post AC #2, and it was nice to wake up and feel normal. I felt nauseous on days 1 & 3 same as last time, and generally not myself the first 5 days. Hope everyone else is having a good, SE minimal day!
-Natasha
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Boy I overdid it today. I have been unable to do anything for the last five hours. Truth be told I didn't do very much, but wow...
I hope everyone else is doing okay.
Fatigue sucks
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I did it and am now sporting a gi Jane head. I totally agree that if it didn't scream “I have cancer" I would be fine with it! I'd rather do that than wear a wig!
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I had my husband shave my head this morning. Now have these needle nubs stabbing me and I'm going at it with the lint roller. It feels good to not worry about the hair any more though.
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Duct tape works well with the stabby stubble. I found it better than the lint roller.
I'm so freaking fatigued. It was a struggle getting upstairs to feed my cats. Going back to sleep.
Hugs to all.
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Hope you wake up a wee bit refreshed Fairydragon. Britgirls you got your period. UGHHHHHH the audacity of your ovaries!
If you like music and need a pick me up today I highly recommend Lizzo's tiny desk concert at npr.org. Goosebumps!
xoxo hope everyone is having a low SE day.
-Victoria
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So I had only my second appointment with my MO today and she canceled the Perjeta in my treatment regimen today because of the severe diarrhea I had the first time I received it. But I would rather take all the side effects now, rather than wait and potentially have to have Herceptin and Perjeta after surgery. I'll take the side effects if it means a better chance that it will destroy the cancer. Also my MO didn't think it would make that much difference in terms of outcome. I want to ask her to put it back into the regimen, but I don't want to annoy her. I'm a bit frustrated 🤨
My hair is starting to come out now, but just thinning all over, rather than in patches. I can't decide if I want to have my husband take the clippers to it or not. How many of you use a sleep cap at night? I didn't pick one up when I got my other caps/hats. Natasha & Victoria, I'll join the “damn the patriarchy" group 😏
Thanks for listening to me grumble! I'm wishing everyone a feel better day tomorrow.
Diane
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dvhmouse, I have had horrible diarrhea also...all 4 drugs I’m being given cause diarrhea so I’m not sure which one my MO would cut out to help but I agree with you...I’ll suffer now and get the damn C gone rather than deal with it later. They wanted me to come in for IV fluids but I promised I’d drink a lot of water and I feel like I have it under control now. Sorry if TMI.
Sounds like quite a few are rockin the bald look..damn the patriarchy...I love it!
I do have a couple sleep hats...friends that have been through it told me I’d need them to stay warm.
Hope you all get good 😴 tonight.
Julie
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Julie - thanks for the affirmation. Not too much TMI! Two hours after treatment today the more severe diarrhea started up again, so it didn't really make a difference, which is what I'm going to tell my MO.
Sounds like I will be getting a sleep cap. 🙂
Diane
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Hi everyone. My first chemo was on July 19. The next one is this Friday. The first treatment went well so now I'm really worried about the second one, lol. My treatment plan is AC x 4 then maybe T x 12. Anyone else doing this plan? Does the AC part get worse with each treatment
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My first day of chemo -TC - 1 of 4 rounds is today. In an hour! I’m nervous, but have been brave through this whole little “fun” ride. No crying or nervousness except for today..lo! I’ll update when done today. I hope the chemo staff is nice and also patient with this newbie.
My best and much love to all! 🌸🌸❤️❤️👍
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Kjchico -sending hugs 🤗 you've got this!
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I'm joining the buzz cut club today as my hair is starting to fall out and while it's short now. I think, I'll go for a half/one inch all around.
Diane
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Melmax I'm on the same treatment course as you my second is coming up on 8/7. Try to focus on today and not think about potential SE that will be happening - What nice thing can you do for yourself today to find a little joy and keep your mind off the next treatment?
Diane, I hope that you have few trips to the bathroom today. In terms of TMI, my advice if you or anyone needs, is to get A& D ointment and use it to soothe your poor tush. Also A & D ointment is great for any chafing and minor skin irritations. Very soothing cause it's made for babies. :-)
Tomorrow I go back to work, I will work 3 days this week and then next week 2 days and then it will be time for AC #2. I have my wig but my hair is still intacted so I plan to do a wig trial run over the weekend. Her name is Veronica, my BFF and I found her at a wig shop on the outskirts of Chicago. She's lovely and discontinued so she was a steal. I am also going to visit the local ACS wig bank and get another wig so I have some options.
I have a couple of slouchy super soft hats that I found on amazon for all other occasions. I don't plan on wearing a wig around the house. A wig is basically just a hairy hat.
KJchico, I hope the day goes as smoothly and stress free as possible.
Hope everyone has a low SE day.
xoxo
Victoria
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kjchico- I just finished T/C on July 10th. Good luck to you. First 2 Chemos for me were hard with se's. Second 2 went better as I asked for extra iv fluids and lower dose on last 2. Don't be afraid to let MO know any se's you experience. Best wishes in getting through your treatment successfully.
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Thank you all for the good wishes. I’m home from the first round and it was painless. I honestly feel good and hoping any side effects do not creep up on me. I’m monitoring my temperature and will drink lots of water. Will take my nausea med before bed.
Thank you again!
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kjchico-glad to hear your first chemo went well. Days 3 and 4 are what to watch out for. Keep hydrated. That is one very important piece of advice. Hope your se's are minimal. May I ask why you are doing chemo? Your diagnosis seems to suggest it is not needed. I had to do chemo due to my high onco score. Peace to you. Pat
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Upstate: Thank you for the kind words. My Oncotype score came back as 47. My very small 8mm tumor was a grade 3 with very weak ER+ PR- and HER-. In fact the Oncotype report said I had negative ER, but my pathology was run again locally and said my ER was 1%. My Ki67 was 93% - which is very high. So that little tumor was mighty. Good thing it was caught very early
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Kjchico-So 1% ER makes you ER positive? I had 2 small tumors, one 13mm er+/pr+ and one 8mm er+/pr-. They only did the onco test on my larger tumor. Go figure. My score was 48.
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I don’t know about the 1%...I haven’t seen the latest re-done pathology on it. I did ask for the paperwork on it, but haven’t received it yet. This is what the doctor verbally told me. We shall see.
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