Chemo starting June 2018
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Thanks, Inna and Rachel! I will double check with my MO about Advi
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i have been taking Claritin for the nuelesta and I have not had any bone aches (currently on my 5th chemo treatment)
Good luck to you all xo
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Is anyone else having eye twitches? Is this normal??
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omg Lulabella! I just googled "eye twitch on chemo" today. It seems to be common for those on Taxotere (like me) or Taxol. It started after treatment #1 and seems to be getting worse. Most people noted it stopped after treatment.
I think I must look like a drunk bald pirate with both eyes blinking/twitching at this point!
#AnotherSideEffect
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I've had some minor ones just the last week or two (I had my last Taxol on Friday). Really not bad but it is comforting to know others are experiencing it. Hoping it and all the other weird little SEs resolve soon!
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Chiming in from the March board! I had eye twitching as well (mostly in my left eye) that started right after my second TC infusion. It got better after my final chemo, but did not resolve completely until about 8 weeks PFC. My MO said it’s a common side effect for Taxol/Taxotere. Just wanted to let you know it might linger even after you’re done with chemo, but it does seem to eventually go away completely for everyone... at least from what I’ve experienced.
Hang in there ladies! 💕
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I have to agree with all of you last week was a mix of emotions, crying one minute followed by rage. I think I’ve settled in the I’m pissed and don’t care phase right now. Of course I care, but I don’t care what other people think or say. I’m so sick of worrying about scarves or hats when its so hot that I finally said screw it. I ventured out to the grocery store and wore nothing. I have some stubble of hair but the scarves, even the thinnest, are way to hot right now. The hot flashes are the worst right now and the humidity doesn’t help. I also have insomnia from hell. I have tried everything. I asked the NP that I see every other visit for something to sleep and she told me to try milk and honey. I wanted to stand up and screw stick your milk and honey up your #$%. I see my MO this week so will ask again. I don’t want something to take all the time just something that when i’m on night 3 of no sleep i can take it.
God news my surgery is tentatively scheduled for the week of Thanksgiving. My BS asked if I mind being in the hospital for Thanksgiving and my thought on this are I know the holidays this year will be a wash so let’s get this done. I also am thinking about a vacation to a beach and ocean after surgery.
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hi Staylynn... a few of the things that I’ve tried for insomnia are melatonin, cbd oil, and marijuana (it’s legal in California). Sometimes it helps. Also, I ordered a cooling cloth from amazon for the night sweats that helps a bit.
Thank goodness the eye twitches are normal! Thank you
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stacylynn: its triple digits here and I'm wearing a cheap straw fedora from Target with big clip on hoop earrings and brighter lipstick.. I look weird I know. A young woman came into the cafe yesterday with a shaved head and the questions of why came streaming in my brain : sick? monk? fascist? mentally ill? and I have cancer! I try not to imagine the thoughts of the people who see me.
We shouldn't have to hide though.
One friend jokingly made the fun suggestion of getting a saffron robe like the Buddhist monks wear and riding my little vintage motorcycle around in it. This is all so hard but the hair is so profoundly unsettling, We can have moments inside our head where we aren't thinking about our cancer.... but a glimpse of our bald heads reminds us and everyone around us of what we are going through.
I couldn't sleep last night either with hot flashes. I was a peri menopausal before my DX (occasional hot flashes, period about every six months, occasional dread feelings and puffy stomach). The real stuff started after double mastectomy surgery and has gone into high gear with chemo. I'm on Taxotere and Cytoxan. Does anyone know the science of why or if this causes menopause? Is the timing just coincidental? I read a lot about heat flashes that make me think not. I'll be on Tamoxifen for the next five years. I know then menopause will be official.
Day 10 here. Starting to feel ready to exercise for the next week. I'm visiting my friend who lives in a cooler area and I plan to take long walks. My digestion is still a little iffy so being too far out can be nerve wracking.
August 17 is my last chemo. Septermber 13 is my implant exchange surgery if I'm fit enough with the new PS.
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Hello to my fellow June2018 chemo peeps
I started my 3 rounds of FEC June 8th, so am half way thru. Experienced all sorts of digestive discomfort but managed to find a formula that worked for me thru the treatments. Finding that just going with the flow, having an end goal and date helps. Have noticed that I am slowing down as treatments compound.
My next 3 treatments are Docetaxel and Trastuzumab and start end of week here. My MO has prescribed Neulasta for the remaining 3 treatments, I am going to question this prescription as my blood counts have been OK so far_not amazing like before I started treatment, but not at the bottom end. I am not working thru treatment, limit my public exposure and have a small family of adults here at home that are very supportive of keeping a tidy clean environment. I question if I need the extra immune support by way of the Neulasta.
Has anyone questioned their MO about skipping the Neulasta and going with the wait and see approach. How receptive was your MO to your inquiry, and what was your outcome.
Thanks
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Finally done with DDAC! Next up are 12 weeks of Taxol. I am dreading those 12 weeks after reading about so many of your side effects. Final AC really flattened me or about four days and still lack my normal energy. Thrush hit for the second time, but caught it very early this time. I really “get” the depression so many of you are feeling! I have avoided feeling self-pity until this week. I only wallow when I am alone so I feel I am containing it. I have worn a wig only once since starting this, though wore them before when traveling. I have given up caring. Hats, wig, beanies, bald are all okay. Take care out there in chemo-land
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I was going to suggest Claritin as well -- I've seen it mentioned a lot in reference to Neulasta, along with something about them not knowing why it helps so much.
Also, I'm so glad to see that other people are equally annoyed at well-intentioned "it's almost over"s.0 -
Washington48, don't worry, the 12 weekly Taxol infusions are much better for the side effects. I have 4 high dose infusions every 2 weeks
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How are you, Popcornme? Did your pain get better
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Hi YYC_girl - I didn't really question my MO on the neulasta because #1 I am working through all this and exposed to airplane air on business travel and all kinds of people, environments and #2 my mother nearly died from neutropenic pneumonia when she was going through treatment and they didn't give her neulasta. I'm not going to risk it. I do the 7 days of claritin and have only had a couple of bone pains but basically nothing. i even give myself the shot since my insurance won't pay for the automatic one. It's not bad - 3 down and 1 to go - last TC chemo on Aug 16!!!!! You should definitely ask but do take care and stay healthy!
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Am I reading correctly that Claritin helps keep the pain away when getting Taxol treatments? If I am, that's good to know since I'm having my first treatment on Thursday.
YYC - I would take the Neulasta. Normally I'm very healthy, but after my first AC treatment I ended up getting a sinus infection and my WBC went way down. Ended up staying in the hospital for two days untiil he doctor was satisfied that my WBCs were on the upswing.
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For me, Claritin only helped with the Neulasta pain. Did nothing for Taxol. Then again, I am on DD Taxol schedule, maybe it works for the 12 weeks one
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I will be on DD of Taxol every two weeks as well.
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InnaB2018, it is getting better but there is still pain. I'm also having bone pain now. I took Claritin but it doesn't seem to help that much. The Advil helps. The nurse said I can take it as long as I don't have fever. How's your pain
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It got much better on day 8 and was gone on day 9. I can’t beleive how long it took me to recover this time.
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Popcornme, I took Claritin for Zarxio (like Neulasta) and that, plus Tylenol, took care of the bone pain. Hoping the Taxol will let me get out and enjoy life a bit more. I seem to be housebound with the Thrush and hives. Have a dentist appointment this Thursday and am looking forward to it. I hate to plan fun things as they seem to have to be cancelled. Hopefully, not the rest of this week....I have some ideas for fun times with family and friends...
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Thanks for all the notes on the Neulasta, I truly dont want any downtime or a delay on the chemo schedule_I am so focused on Sept 20th, being the end game. But I am going to ask MO to see what the full benefit would be, as well as the risks if I dont take it. I count myself very lucky as had only 2 days of slight nausea, and a night or two of heartburn_mostly from late evening dinners!
I have been prescribed T3s for pain, and Clartin dose prior to chemo appt but, I am assuming for the Taxotere. The Claritin works but it must have something to do with the antihistimine creating a noncombative environment for the regeneration of all those new cells.
Oh Washington4, cant imagine Thrush and hives at same time, hope you get out and about on Thursday, find those fun times with F&F.
cc738nj, you are one brave cookie to be working thru this adventure, must have been a bit scary with your mom's emergency. You are so close to the chemo end game_stay strong, best of care & luck
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YYC_girl:
I had no Neulasta my first treatment and my neutroplis dropped to 200. (normal range is 1500-7500.) My second round I got it and at the same point in the cycle they were 6700. Third round, 6200. My chemo is every third Wed. The first Neulasta dose, I took Claritin on Wed-Sat. and on the 3rd one I took it only Wed & Thurs. I had no pain at all. I had chemo toda, Neulasta tomorrow and am going without the Claritin to see what happens. One of the lucky ones, I guess, but wanted to let you know that not everyone necessarily gets that pain. Good luck whatever you decide, it definitely helped me.
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Round 4 today and the lump has grown after shrinking considerably to this point.. As if I wasn't emotional enough right now. I'll be having an ultrasound to hopefully determine if it's tumor growth or just inflammation. Prayers and good thoughts are appreciated.
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Oh kat22. How do you know the lump has grown? from feel or imaging? when will you get the ultrasound? We'll all hold you in our hearts. %$#@!&*^! to cancer!
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kat22 - Hope it’s nothing to worry about. Keeping you in my thoughts.
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rachel: from feeling. Doc measures it before each treatment, but I specifically asked her for a close inspection because it felt bigger to me. I expect a call in the next day or two to schedule the ultrasound, and I have a followup next Thursday with both the oncologist and the surgeon, who just moved into the same building with the onc which will be nice. Thanks all for the good wishes. Hoping it's nothing, I've been doing so well.
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keep us posted Kat22.
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Kat22, thinking about you and sending love your way.
Yesterday was my first dose of Taxol, and I think i’m On the steroid high today. Just did a top to bottom clean of my house and feeling pretty good. Only complaint is my finger nails are SSSOOO sore. Cleaning was tricky but got it done. Saw my onc before the appt yesterday and she gave me gabapentin to help with minor neuropathy, hot flashes, and the lovely sleeping issues. I actually slept for 11 hours last night which is completely it for the norm. Hoping its a good sign that this will work and not just pure exhaustion from being up for over 36 hours with working the overnight shift.
Hope everyone is doing well, or as well as can be. We are all getting closer to the end! Keep our chins help hig
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Praying for good news kat22! Hang in there🙏❤️0
