November 2019 Chemo Club
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Charlie, I'm happy to hear that it went well for you. Part of the reason why I've been posting my day by day recaps on here is because a lot of the information found online can really scare the scat out of you. I think the psychological impact of this whole ordeal is worse than the physical. It sucks that nobody knows how their experience will be. You wind up Googling everything, and are bombarded with horror stories, and a laundry list of side effects, it'll drive you mad. My experience was as good as could be expected, and I still worry about how the second cycle will go because apparently they're all different. I hope this week stays manageable for you.
Eigna, dare I say 'welcome aboard'. At least for lack of a better phrase. LOL
Today I was 100% back to my normal self.
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Charlie - I'm so happy for your positive experience! Dixie is right - sharing the good experiences is just as important as sharing the bad. We all know the horror stories, so it's wonderful to hear a good one.
Eigna - allow me to welcome you aboard as well. While this ride may not be fun, at least we have each other to encourage and commiserate with. Particularly since the three of us will be getting the same regimen. I'll be very interested to compare our experiences
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Day 2- still feeling energetic from steroids so got my bed washed as I had a night sweat episode last night and soaked my shirt and pillow cases. Other than that it has been smooth sailing. I slept in increments but tonight I should be able to sleep through the night. I expect tomorrow my energy level will drop as the steroids are done and just down to 2 anti nausea meds today and tomorrow with breakthrough ones if needed. No headache or pain or any other side effects I have noticed. If chemo was like this the whole way through- what a piece of cake that would be!
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Oh, I’m happy to check in here today and see that for the most part things have gone well for you girls! Makes me feel less anxious for my first infusion Thursday!
Welcome, welcome to the new members of this club-you-never-wanted-to-be-in thread!
I also appreciate the encouragement of those posting who are further down the road than we are. There is hope
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Since I’ve been reading on different posts it seems I need to drink a lot of water... how much should I drink and this is before I start the infusion?
And have anyone done the fasting before treatment? How does it work?
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They say to drink as much as you can like at least 2 liters a day. I just brought a big cup filled with iced tea with me throughout the first treatment and I drink iced tea all day. Water where I live is quite chlorinated and I don't like the taste but they will have water there if you forget. It's just something to keep in mind to stay hydrated- you don't have to force yourself.
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Also I wouldn't bother fasting before the treatment. You will get great anti-nausea medications they will make you take before the chemo starts and they want you to have something in your stomach for the steroid part of the cocktail as it can be hard on your stomach. The steroids will also make you very hungry- at least they did me- so there's no point fasting. I'm not a big fan of the thought of fasting through treatments like this. You will need all the energy you can get - let your body tell you what it needs or doesn't need.
Some other interesting factoids if you're on AC- they call it the "Red Devil" because the cocktail is red in colour and your first couple of pees after treatment will be that colour so don't panic!
If you have pets or small children, be sure to keep the toilet seat down at all times. They recommend you flush twice after each visit to the bathroom for the first 48 hours as the chemo drugs could remain in the toilet water and you don't want anyone getting that that doesn't need it. Also no sex without a condom for the first 48 hours after treatment- bodily fluids contain the chemo drugs as well. No deep kissing either. I'm sure we won't feel like doing that anyhow but ya never know! LOL!
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Thanks CharlieBug for your answers.
Good luck LisaKPisa for your turn on Thursday! You can do it
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I wish there was a "like" or emoji feature in the posts. I wonder if that's something we can advocate for. Even a "heavily drinking" emote would be so useful
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Hi, I'm new here....hoping to share in the wisdom and the tips. I've done 2 of 8 cycles of CMF (10/31 and 11/14). The first one was manageable (tired, mild nausea, some bone aches, constipation). The second one was vastly different (3 of 4 days in the ER with various symptoms that required observation--the most prominent being extreme nausea and fever). Really threw me for a loop. The second time I felt nauseous even during the infusion and was getting sick within four hours of getting home despite taking anti nausea meds and being diligent about hydration. Talked to oncologist about trying to switch nausea meds and take something new before hand which we will try next cycle. Am hoping that helps. Yuck! On the positive side though, I had started acupuncture after treatment 1 becuase I had read on these blogs that it really helped (a little out of my comfort zone but went for it and actually find it pretty relaxing). Despite how hard this round was I do feel that the bone aches and fatigue were overall better (I did take Claritin both times). I also like the suggestion about the additional IV hydration during the infusion, am going to try that too. Anyway just joining the group to say hi and share in the community. We got this!
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I am so sorry for the hard time you're having Jrunstroop. I don't know exactly what CMF entails ( you didn't indicate your various procedures and details of your treatment in your profile) but it sounds very intense. I really hope things improve as time goes on for you!
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I can't figure out how to make those details show Charliebug (I entered them in...do I have to make it "public" for them to show--geez never thought I was so tech challenged?)....AND...CMF is supposed to be a lighter regimen...was shocked at the reaction I had for round 2...but just praying it was an aberration and also knowing that I am doing what I need to do to come out of this stronger.
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Yes you make it public- only if you want to though! I really hope that reaction doesn't happen ever again for you. That's the thing with these treatments though, everyone is different so even hearing stories from others who are going through the exact same thing doesn't always mean it will work the same way for you. All you can do is keep on keeping on and you're so right that you will come out of this stronger! Hang in there!!!
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Gave myself my first injection of Lapelga this morning. I literally didn't feel a thing- not a poke or a pinch or anything. I took a Claritin along with it so hopefully the bone pain will be tolerable. Day 3 and symptoms are stable. I did get some face flushing yesterday but it went away fairly quickly. I slept well throughout the night and so far so good today
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Hello all,
I wanted to go ahead and make my first post. I was diagnosed in October (ER+, PR-, HER2+). I am doing the treatment route of:
Chemo - TCHP for 6 sessions, every three weeks
Surgery - Double mastectomy, reconstruction with expanders
Radiation - unsure for now until after surgery and they test my lymph nodes
Chemo drug - unsure for now, but TDM1 if cancer does not react well to the TCHP
Chemo - HP for 11 sessions, every 3 weeks
Surgery - Reconstruction
Hormone therapy ongoing for 10 yearsI had my very first chemo TCHP session yesterday. It was an 11 hour day. It should be 8-9 hours next time hopefully.
I am feeling very filled with fluid and a little weird, but overall not bad. They gave me some extended nausea relief meds so am sure I will feel it once they start to wear off. They also gave me the neulasta patch that will release meds this evening.
I am not really sure what to expect, I keep waiting for something to hit me.
Anyways, I am thinking about everyone else in here and am glad to have a group of you all to chat with while going through this. Lots of positive vibes to us all! We are all rockstars and can do this!
-Amanda
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I wonder if menstrual bleeding is to be expected during chemo? My schedule is pretty regular, and I'm not supposed to have it this week, but I am, and it's a doozie. Perhaps the chemo causes the uterine lining to shed, similar to hair falling out? But, if it were a possible side effect I feel like it would be easy for me to find information online. I read that steroids could effect it also, so maybe that's it. And, my blood tests all showed that I was anemic, so that may be effecting it. My age is 44, and I haven't started perimenopause yet.
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Hello, All ~~~
Thank you so much for your posts --- I am a newbie, getting her first infusion this Friday, Nov. 22, so a little freaked out --- your sane, wise posts help a great deal!
I'm 66, HER2+ ER(+) PR(-), will have 6 rounds of TCHP over 18 weeks, then have bilateral mastectomy with no reconstruction. I don't know what kind of chemo/hormonal/radiation/etc. treatment I'll have after surgery. We have no idea right now if there is lymph involvement. BRCA1, BRCA2 testing was negative. They did not do the Oncotype Dx test on my biopsy tissue.
About preparing for chemo: does anyone have good suggestions for a light, appropriate breakfast beforehand? (My treatment will start around 9 AM) I assume that if they will give me an anti-nausea med beforehand, there is no need to take the anti-nausea meds they already prescribed me (for use at home) a half hour beforehand??
Anyone have suggestions for good snacks to eat during infusion?
Many, many thanks!
Kerry (corvidae53)
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Hey Dixie - I don’t know about getting your menstrual period during chemo. My oncologist told me that my menstrual periods will stop and will not come back I’m 43. Got my date today. I start on December 17th. I have a CT scan scheduled for this coming Friday. Getting nervous 😬 did you buy a wig etc before you started your first cycle of chemo? I need to get organized...
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I bought cheap wigs off of Amazon. Two fun colors, and one brown. The brown looks surprisingly good considering it was under $20. I also bought a hat, and was given a hat.
And,I bought things like cheap toothbrushes (because somebody recommended I use a new one each cycle), Lysol spray, hand sanitizer, I couldn't find a thermometer in my house so I bought one to keep track of my temperature. There's no need to buy too much beforehand.
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Hi all! Had my first TC infusion yesterday and wanted to report back. It actually went much better than I expected generally. A few little hiccups at first due to some miscommunications by my doctor's office, but nothing big, just annoying.
The infusions themselves were very easy. Started with 45 minutes of three different antinausea drugs, thenTaxotere first for an hour and a half, followed by an hour of Cytoxan. Felt fine through all of it, even doing my DIY cold caps, hand caps, and feet caps. Interestingly I was the only person in the entire room doing any sort of cold therapy. It appeared that most people have never heard of it. My sister and I weren't keeping to an extremely tight schedule of changing everything out, like most people using commercial cold caps do, but as I've said before, my goal in the process is just having my follicles live enough to grow hair back even if I lose it all during chemo. We'll see.
After chemo yesterday, I felt good enough to wander through Trader Joe's with my sister and get an early dinner. Finally got hit with a little "tired" when we got home. Took an Ativan to sleep since I was still on steroids, and that worked pretty well. Woke up a little loopy this AM, but not bad enough that I couldn't drive to work, though somewhat later than usual. I've felt pretty good so far in the office, but after a salad for lunch, I am now feeling more tired. May not make it till 5pm. My Neulasta shot should be self-injecting at about 5:30pm or so, though they told me I can drive while it does it without a problem, unlike the video for it says, ????? I specifically told the nurse that the video said not to, but she was adamant that it would not be a problem. Hmmm..
Will try to report more later. If anyone has specific questions, ask away!
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me too! Same regimen.....Glad to find others on here getting TC. My first treatment isn’t until a December 2... 4 treatments,every 3 weeks.
My MO said I didn’t have to get a port . I’m just wondering if any of y’all did TC with no port. My concern is I have 2 good veins in right arm and they can’t use the left because of lymph node removal.
Also, what is cold caps?
Thx for any info and opinions
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do I need to question my MO about getting Neulasta? He didn’t mention it. First Treatment isn’t until December 2
Also my hair is naturally very thin and several years ago I lost a lot of hair after Gastric Sleeve surgery, some came back. Is the cold capping to help that? I’d love to know more about ways to fight hair loss.
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AC #1 in the books! Seems a common trend overall from others...it went surprisingly well! Infusion started at 9am, done by 12. Not too shabby, considering that included a 20 min added clinical trial drip.I used rx Lidocaine before my port access. Didn’t hurt but a second of pinch!I’m already grateful to have the port for ease!
Managed to eat some chicken noodle, even though I wasn't hungry. Walked about a mile with my friend. Drank over 2L, only my first pee was red. Slightly worried despite all the hydrating my body isn't eliminating Red Devil! (I want it out of me!) It’s about 8pm now and I’m feeling almost nauseous and a small headache, but nothing not completely tolerable.
My daughter (21) was supposed to accompany me today but decided to stay home so as not to infect anyone. Last night she started w/coughing and sore throat, full blown cold today. She’s self-quarantined and wearing a mask when she comes out of her room.
All told, I’m encouraged by my lack of big side effects today!
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Great updates Lisa and Karen! Way go to go!
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Margo - I got the port because, with only one arm's veins being available now, I don't want to risk damaging them. I didn't like it at first, but now it's no problem.
I would definitely ask about Neulasta. I had my first auto injection this evening and it was nothing. Was actually sleeping when it started. Very easy. And I've been taking Claritin since yesterday as everyone recommends to help with any bone pain it might cause while recharging my white cells.
I did however speak a tad too soon this morning about my easy first day at work. I ended up getting hit by a tidal wave of tired by early afternoon and went home to bed at 3:30, sleeping till 9:30, and I'm about to go back to bed again now so I can hopefully go into the office again tomorrow. I didn't expect that kind of fatigue so soon, but I literally couldn't keep my eyes open. I guess the lesson really is that this is a day by day process and you have to listen to your body.
As for cold capping, I am not using a professional system as they are too expensive for me and I don't mind if I temporarily lose my hair now, if I can at least preserve my follicles enough for it to grow back after treatment. I am using DIY cold caps with dry ice, along with cold mitts and socks on my hands and feet to avoid neuropathy. I have seen next to nothing about anyone using any sort of DIY system, probably because the people who really want to maximize the chance of keeping their current hair definitely want the proven systems. There are many YouTube videos online of people and their experiences with them. Though I don't get the impression that they would do anything to restore hair you've already list through other sources like the bariatric surgery. My impression is it is just for keeping as much of the hair as you currently have. Search for cold cap threads in the formula here too. They can help with more specific info about what they used and what chemo regimen they were on at the time and how successful they were.
Lisa - glad to hear your first day went well. Hope the side effects stay as minimal as possible. You are definitely doing all the right things from the sounds of it
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It's day 5 for me and I found out the hard way that constipation is a real side effect. Can't say I'm a big fan. I will definitely stay on top of my liquids, try and be lightly active and take Senokot regularly from now on. I never want to go through that again.
Aside from that, I've just been sleeping a lot and my appetite is fine. I am going to make something more nutritious today though as popcorn just doesn't cut it unfortunately.
Decided I will see how many days I can go without smoking too. It's not something I set out to try but since I don't feel like it right now, why not? My body is already stressed out so one more thing won't hurt and if I can come out of this a non-smoker all the better. We'll see how that goes.
Wishing you a well day....
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thanks so much Karen! Very helpful info! I hope you have a better day today.
When do you get the Neulasta? I have my first treatment Monday Dec 2 and no one mentioned it.
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The chemo nurse puts the Neulasta Onpro (which is an auto-injecting cartridge) on either your arm or your stomach at the end of each infusion. It is set to inject you with the drug 27 hours after it is attached. It painlessly injects the Neulasta for 45 minutes at that time and then you can just peel off the cartridge a few hours later. If it weren't for the way the cartridge beeps a few minutes before the injection starts, I would have slept right through it.
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thx so much! I spoke with the nurse a while ago and that exactly how she described it
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In my limited experience, I was constipated at first and then came the diarrhea days later. I hate to even call it diarrhea, though, because it wasn't that severe, but there was some stomach cramp inducing bowel movements. I'm on day 11 after chemo, and I still experience it a bit. Which is fine, I'll take that over the constipation.
I really appreciate having all of you to relate to, it helps to just be part of the discussion. I'm thinking about all of you.
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