Chemo Starting September 2018
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haha thanks so much pcranky
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thanks Bostonian! I’m in Westford MA. Nice to “meet” you all!
Ok let me figure out this signature thing.
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Thank you tigerlily! I look forward to hearing how everything goes for everyone. Will be thinking of you all. Thanks for the warm welcome
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Hello September chemo group. I was in the June group and just finished up my 4 TCs. Just wanted to say that our June thread is full of very helpful tips. I found the first one the hardest because I didn't know what to expect and didn't know how to handle my SEs. There really are solutions to most of them.
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LuvBngGma - Call your MO or the on call # for the practice. Tell them you can't get ahead of it, They can change, increase or alternate meds.
Ask them if you can shorten the cycle between the anti nausea meds or take alternating ones but more frequently, or they may have another med in mind entirely.
Do not be afraid to bother anyone and don't hesitate to call if you need them. For OTC things i've found ginger ale with a little extra fresh ginger in it helpful, as well as queasy pops, but please reach out to your doc, its what they are there for.
Also, if you are prone to reflux, that could be compounding things, maybe sit reclining rather than laying down entirely if that is a problem.
Good luck - I hope it passes soon
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Thank you Tigerlilly.
I bought B6 for neuropathy. Should I take that every day during chemo?
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I start chemo Mon Sept 17. I have Chemo School today, tomorrow I have an ultrasound on my liver (trying not to stress about the lump found during a physical exam--depending what it is, it could delay / change my chemo plan--does anyone have any experience with this?). Also having an echo cardiogram and chest xray tomorrow. Friday I get my PICC line in, to be ready for chemo on Monday. My chemo will be 8 rounds of AC/Taxol every 2 weeks (16 weeks total). One month rest then radiation 5 x week for 6 weeks. I am trying not to let my anxieties get the best of me but am not sleeping well at all. Will also be on Neulasta, with one shot the day after each chemo treatment. I hope the bone pain isn't too bad.
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Hi
What did you use to cool your fingers and toes?
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HI
were you told its ok to take biotin during chemo? I am getting mixed info? Also did you use a cold cap?
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@elizabeth, sending good vibes to you in regards to all you are about to go through. I am on day 8 (September 3 infusion day), the bone pain just now started to lessen. Tylenol has been my friend when I go to sleep at night.
@2018summer, I used zip lock bags for my nails. I wore socks then put the ice bags under my feet (nurse showed me). And with my hands, I put a pair of socks on my hands then put my hands especially my finger nails on top of the ice bags. I am sure other people have different ways of doing it tha they can share with you. As far as biotin, my doctor is playboy with me taking it during chemo.
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yes on biotin. And my nails look fantastic! Going to keep that supplement going!
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luvbgngma- meds around the clock even if you feel fine!
Cath- hope you will go through with less dude effects!!!❤️❤️
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My first AC is in the books. A bit jittery from the steroids (or residual nerves). Back at home and enjoying the last hour of quiet before the kids return home from school. Going to try not to anxiously await SEs...
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KK2018 - you rock! 1 step closer to done!
Hope the SE's aren't too bad. For what its worth for all the bad I read the three people I know personally who had AC managed it ok, maybe you'll be like them!
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KK2018, congrats! (Is that weird to say?)
Being one down is awesome. My AC 1/4 is Wednesday. I scheduled a haircut as a "model" Thursday afternoon. I hope I'm feeling up to it, because I'm really looking forward to letting a stylist do whatever she wants with my hair. I hope to see 4-5 styles before she's done, and will finish off with a pixie. My 10-yo is really looking forward to shaving my head after that! 13-yo, not so much... Hope you can kick the jitters and get a good night's sleep! And little to no SEs! Can't wait to hear how awesome you feel tomorrow!
xoxo
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hello all! Newbie here. I begin AC treatment this week once every 3 weeks for 4 treatments and then 12 treatments of T weekly. Nervous....dreading port placement as I will not be completely under 😳. God is with me and all of us! I'm much calmer than I would have ever thought I could be! NERVOUS is good for me, the normal me would have been FREAKING out and panicking! Praising God for peace that passes ALL UNDERSTANDING!
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So tomorrow is infusion #2 and i'm WIDE AWAKE.
Gah.
On the bright side i did the Look Good Feel Better™ workshop today and it was fantastic!
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On Day 12 after my first round and I find myself obsessing a little about my hair. With each twinge of my scalp, I wonder if that's the start. I wore a cap over my buzzed head yesterday because I have a dread of hair starting to fall off me in front of a patient. Other than that, my only lingering side effect is thrush in my mouth and the diflucan that was prescirbed for me seems to be taking care of that.
Heather - hope the port placement goes well. I was completely out, but I have a friend who had conscious sedation and she said she really couldn't feel it. Waiting for that first infusion is super hard, but then after that it's less scary.
pcranky - I plan to medicate myself the night before each round so I can sleep!
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Wanderweg, I may do the same - I was up til almost 4 last night!
Heather: Welcome!
Pixsie - I saw your headcovering pics and you are going to rock bald! Adorable, you have such a great face for no hair!
Taxol #2 today.
The good news. I met with the genetecist and was negative for mutations on 20 different genes besides the brcas (also negative on those), which is great. I will follow with her evey few years because she's sure i'm positive for a colon cancer gene that has not yet been identified. (My father, aunt, grandfather and great grandfather had it, and my sister had pre cancerous polyps removed at 32).
Also - when I had my surgery, me and my family/friends met this amazing couple in the waiting room who had been through SO MUCH but were riotiously funny and had the best attitude I've ever seen. They really got me thru surgery day. When i looked across the infusion room today, they they were in the next (i don't know what to call these, "areas" booths? Best surprise ever! This time we exchanged numbers.
The less good news. My veins, annoyed upon learning that we'd be doing this every week and not just once, decided to stop cooperating. Sticks were hard, blood draws were hard, infusion was painful on the arm, and they had to stop and move the iv a few times. so..
I will be having port surgery sometime in the next week or two. Not the end of the world, and probably better in a host of ways, but I had hoped to avoid it.
The mixed news - she lessened the steroid by half today so i'm much less wired, but i feel much more conked out. I came home and took a massive nap with the cat.
Onward through week 2!
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I am home with a bad cold today, but I finally have a start date - Sept 18! I met with my MO at the end of last week and was relieved to really like him. He even made a Ghostbusters joke when I said, "So who do I call...?"
I asked about delaying by a week which he said was ok, but I now think I was just stalling for time because I'm scared and don't feel "ready." I suspect I may never feel ready! I told work yesterday, too, which was nerve wracking. I'm a contractor so technically can take whatever time I need -- but they are also under no obligation to keep me around. It went well though so fingers crossed I won't have to add job loss to the list of cancer side effects.
Thanks to everyone for continuing to share your experiences. I'm keen to hear how everyone is feeling after AC as that's what I'll be starting with. Oh -- and anyone else NOT not getting a port or Neulasta/Neupogen? I'm a bit worried as those seem so standard in the US but apparently not here in NZ...
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I am now 27 hours past my first AC. I know that because my neulasta on pro just beeped and injected me with my meds. SO far I feel nothing. Ate oatmeal for breakfast, tuna salad over a green salad and a small bowl of mac-n-cheese for lunch, and likely some leftover pasta for dinner. No nausea. A bit of post steroid weirdness in my eyes which lasted an hour and then that's it so far. Normal work day - which is really just me sitting in front of my laptop and taking some phone calls. The anxiety of SOMETHING happening soon is wearisome...but I'm glad it hasn't happened yet. Taking my meds as directed. Hoping I get a good nights sleep. Reached out to my stylist to schedule the pixie cut I always wanted but know totally doesn't work with my face chubs, LOL. That's about it for today. Good luck ladies - I really love when "my favorite topics" show new posts
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Amazing KK2018 -- long may it last! And I'm a firm believer that everyone looks good in short hair so roll on that pixie cut
Can I ask what your anti-nausea meds are?
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Beeline I do have a port and all the nurses love it but I’m kind of ambivalent-it is such a weird lump and on top of the two weird lumps that have replaced my breasts I feel like my whole chest area is a weird lump, lol. I take amend once daily days 1-3, decadron once daily days 1-4, zofran once a day, more if needed. I have compazine as needed but haven’t taken that one yet. And I took my first Ativan last night before bed to counteract the jitters but that is also considered an anti nausea med. I don’t want to get hooked on anything for sleep but I also don’t want to deal with insomnia when my system is compromised. I’ve also taken loratadine the last 3 nights in preparation for the neulasta. And senokot bc apparently zofran causes constipation and I had my first true bout of that post surgery so I want to prevent it here! Before all of this I rarely took more than an ibuprofen/sudafed for sinus congestion and now I’m a pharmacy. Life is weird 😉
Good luck tomorrow Piksie
I’m following your taxol stories pcranky since I will experience them in 11 weeks...
Have you had your first treatment Heather?
Now that we are solidly into this month and more and more of us begin treatment I want to wish you all peace, calm and minimal SEs!
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Good evening all, welcome Heather.
@beeline, I don't have a port - I think that is what you are asking :-) It really wasn't considered. My IV the first time was in my hand after considering my arm. It was fine and no bruising, unlike the butcher job the intern did on surgery. My hand was bruised for weeks.
Hang in there KK. It is nerve wracking but hopefully you will not have too many SE. Fingers crossed!
I continue to feel good. Had a headache today but unrelated. I am trying to keep the liquids going but had a not as good couple of days so maybe that is why I got a headache. Drinking more water was an ongoing goal prior to all this.
I am starting to lose hair, all over. Going to be a lot of vacuuming btw me and the dog. And today my scalp feels weird. Kind of itchy but not quite the same. I am exactly 2 weeks post round 1 so I guess it is time. We will see how the Paxman is. Of course, I am staying over in the city tomorrow night for some meetings and I am worried about suddenly loosing all my hair. I packed a wide head band that will cover a good portion of my hair in case I have a sudden massive loss. I continue to gently wash my hair most days, no hair dryer. And just a little organic hair spray so I don't look like alfalfa.
Also, told my stepdaughter tonight. She is 10 and thankfully (at the moment) unobservant. She was not phased by all the flowers showing up at the house and with the summer schedule she missed the surgery and my first chemo. She took it all in and did not say much. Not sure how to react to that but at least it is out in the open.
@pcranky, why did they reduce steroid? I have asked for more tapering.
The neulasta commercial is on tv a lot tonight. I abhor pharmaceutical advertising.
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@kk, constipation was my worst side effect. I finally started talking colase and am finally almost back to normal. The nurse plans to do senakot or whatever it is in my IV and I was told to start taking colase a few days before chemo. They believe it was the Zofran that caused it so may take less next time. I had no idea and was taking it twice a day and managed to poison myself
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Tigerlilly - Taxol is typically not as high nausea as the other protocols, so they give the steroid primarily because some people have an anaphylactic reaction to Taxol. They usually (not always) know within the first couple treatments if you are going to have the reaction, so they start cutting the benadryl and steroids after the first treatment to see if you react and if you dont by the third they discontinue it entirely. At least where I am.
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I started yesterday. TCHP, I think it is? Standard plus Herceptin and Perjuta. I am ILC and triple positive.
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Thanks KK and Tiger - yes, I put that very badly. I was asking if anyone else was having their infusions administered through an IV (not a port). And also if anyone has not been prescribed Neulasta or Neupogen. I blame this cold which really feels like the last thing I need!
Looking back I can see pcranky, you are also in the IV boat. I'm sorry that didn't go well. But good (and very interesting) news about the genetic testing. I have asked for genetic counseling because I don't have access to my mother's family history, and especially with 2 daughters would like to know if this is something I'm going to pass on.
Tigerlilly - glad telling your step-daughter went ok. It can definitely be hard with kids to know what to say and also to judge the impact on them.
Piksie - good luck and I hope you'll share your hairstyle pictures with us!
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Help, folks. I started chemo on Thursday last week...the 3 drugs listed below plus Herceptin. And I got Neulasta injection the day after chemo. I felt lousy the first day or two after chemo, but I feel worse now that I'm on day 5-- pain in my kidneys (I have stage 3 kidney disease from diabetes anyway), nausea, inability to sleep, pain in my bones, spaciness, & increasing pain from a nerve injury from my first cancer years ago. Today I finally threw up uncontrollably, started shaking, and couldn't stop crying. I live alone with 2 adult kids who really can't come home for this, so I have to get through this on my own, but I'm really scared now. I lost about 10 lbs this week alone. Keeping water intake up, but the only thing I've eaten today was a handful of dry cereal and one can of chicken soup. My oncologist told me to call him if I threw up, but I honestly hate to bother him, and I don't want to cry on the phone and was afraid I would. It's the sterioids...they always make me emotional. Any further tips on getting through this? I have 5 more rounds to go. And when might I feel better? Thanks!
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