Starting chemo February 2020
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Morrigan - not a stupid question at all - Day 1 is the day of chemo.
Happy Valentines Day everyone!
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Happy Valentine's Day!
Maddy83f - Thanks, I was actually counting day 1 as post infusion day. This actually makes sense and lines up with others on TC who said 5-8 were their low days.
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My low days after my first AC were day 1, 2 partially, 3, 4, 5, and 6. It sucked lol
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I’m learning so much from your posts!
Dysonsphere- glad you are feeling better. It’s good to know that we can ask for fluids when we’re feeling bad.
ScatteredEnergy- It’s good to hear from you. I was getting worried about you. I think I’ll by some jello to have on hand in case water tastes gross to me. Let us know if you’re able to tolerate the lemonade.
Morrigan- Good to know about days 5-8. It’s good to have some idea what to expect. I was going to do TC, but now we’re replacing the taxotere with something that won’t put me into anaphylaxis. The new drug has the same active ingredient. I’m expecting my SEs will be like TC.I’m finally scheduled for my second attempt at my first infusion. I’m going in on Monday. This time I’ve added Lemonheads to my chemo bag. I did not enjoy the taste in my mouth during my first try. We’re praying for an uneventful infusion this time!
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I’m day after infusion so I guess that makes me day 2 on taxol?? Here I was thinking I wasn’t having any side effects but I’ve noticed my all time favorite water that I drink constantly every day has tasted like tap water today and yesterday. Thought it was just them giving me tap water but now I’m wondering if that’s a side effect... I was really hoping water wouldn’t taste terrible... anyone have tingling on their tongue? I may be just paranoid now and thinking I feel stuff but I think my tongue is a little tingly. Not like allergic reaction tingly. More like when u burn ur tongue and it’s tingly type of feeling.
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hray1993: I haven't had a tingling on my tongue but water does start tasting "off" for me by day 3 and I have found that in order to drink enough fluids I need to change to ginger ale. By day 7 or so I am able to tolerate water again, but it needs to be really cold and have lemon in it.
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Water still tastes OK to me, although I never drink plain water, I always add fruit (lime) to it and I drink it super cold) but, I always drink everything ice cold.
I just added Jello to my diet and I'm kicking myself for not doing it sooner. It tastes good. I bought a ton of fruit this week since I seem to love the sweet stuff.
I also added some protein drinks, although I don't need them now as I have my appetite back. However, next round I'll make sure to drink them during my low days when I have no desire to eat.
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the tongue tingling may have been due to something I ate possibly. I don’t have it this morning. This is going to be so hard for me. I’m extremely picky and hate jello and ginger ale so I have no clue how to combat this water tasting terrible thing... just so I’m clear day 1 is day of infusion right? And the day after Is day 2? Etc
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I am new here so will introduce myself. (I should have found this thread a couple weeks ago!)
After LOTS of research, I choose to cold cap. My one concern was the very rare chance of having cancer cells in my scalp. I read a study that included 2 women with breast cancer that had cancer cells in their scalp prior to treatment. The Taxotere killed the scalp cancer cells even though they cold capped. The study indicated that they believed that the Taxotere got to the scalp, just not with the intensity to kill the hair follicles, but with enough intensity to kill the cancer.
I did my first round of TCHP chemo yesterday. After all my worry, yesterday was good. There was really no pain or discomfort from the chemo. Even the cold caps didn't hurt, though they were annoying. My day was so LONG. I know the first day of TCHP is normally long, but the cold capping added so much time. I started at 8:45am with the flush and pre-meds. Finally got the Herceptin at 9:30 which took 90 minutes since it was my first time getting it. The Perjeta started at 11:00 also with a 90 minute infusion. When that ended at 12:30 we started cold capping because I had a 60 minute observation before the next drug. I used Penguin Cold Caps and used their White Glove service, which means they sent an experienced cold capper who brought everything. That costs an extra $500 per chemo day but was so worth it. Taxotere started at 1:30 with a 90 minute infusion, followed by Carboplatin for just a 30 minute infusion and a 30 minute observation. At 4:30 we (and our cold cap person) went back to our house for an additional 4 hours of cold capping. I had no reactions, no side effects. I did use ice socks on my feet during Taxotere and Carboplatin, used bags of peas on my hands, and sucked on ice in the hopes of avoiding neuropathy and mouth sores.
My husband tried to learn how to cold cap, was 60% of the way there, but doing it right vs. 60% right is the difference between keeping your hair and losing it. I will be doing the white glove person again in 3 weeks and hope that my husband will be able to perfect his cold capping enough to go it alone.
My doctor fought my insurance and was not able to get Neulasta approved, and somehow the daily was approved wrong so I have to go today and the next 4 days to the clinic for a shot of Granix (like Neupogen). Hopefully they will get it all straightened out before my next chemo in 3 weeks.
This morning I woke up feeling completely normal, as if I didn't even have chemo. Now, 3 hours later, I am starting to feel a bit crummy. Hopefully it doesn't get too bad.
I will try to go back and read the prior 7 pages of this thread to get to know all of you. I think it will help to have online friends to accompany me through this journey.
Tara from California - 2 kids: daughter 20 (away at college in LA) and son 18 (senior in high school), plus a very helpful husband that I am super grateful for right now.
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hello Tara! I'm doing Cold Capping as well (Dignicap) which is easier since its a machine that pumps cold water through the cap (no changing).
My place turned the Dignicap on while I was getting my Steroids and, then after 30 minutes the machine said it was ready. After that we went to Chemo (T/C) and then H/P. My cold capping was done before the Perjeta (about 30 minutes). I'm told that by Cycle 3 I'll end up sitting with the Cold Cap for 30 minutes post Perjeta completion.
You might want to see if your MO will switch the order it might go faster.
I did the cold slippers and cold mittens but, slept through the Taxotere so didn't do ice chips. I don't have any mouth sores but, will do my best to stay awake and eat some chips next time.
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Hi Tara and welcome. I start on Monday 2/24 and will be doing DigniCap like morrigan. My chemo is Taxotere, Herceptin and Perjeta. I'm paying close attention to everyone's experience.
Where did you get the ice socks? I saw a post a few weeks back (I don't think its this thread) of someone who got mitts and booties with gel inserts. Of course, I can't find it now that my first infusion is getting closer. lol
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MNSusan - I got my mitts and socks from Amazon, they have a pretty large selection
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https://www.amazon.com/NatraCure-Cold-Therapy-Socks-Treatment/dp/B003L4WONS?th=1&psc=1
MNSusan- these are the cold therapy socks that I’m using. I alsobought an extra pair of gel inserts.
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I got those same cold therapy socks, and got a spare set of ice inserts. The half insert is in the back/heel of the sock. I took it out, put a loose sock over the therapy sock, then slid the half sized ice pack inside the loose sock so it was on top of the therapy sock, above my toes. I didn't think I needed to protect my heel from neuropathy, but wanted extra protection for my toes. I didn't leave them on the whole time. I left them on until I needed the bathroom, took them off, and when I got back I left them off for about 10 minutes until my feet weren't annoyingly cold before putting them back on with the other set of inserts. I had read someplace that 15 minutes of icing per hour was enough but I did more than that.
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Welcome TaraMom22! I hope you have success with your cold cap.
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hray1993, I got the tongue tingling too- kind of felt like when your arm wakes up after it falls asleep. I can't tolerate any level of spice at all right now and I usually have a very high tolerance. Yesterday all I wanted was cold, smooth food - cold cut up melon, full fat Greek yogurt, pudding... today was a little better but still couldn't eat anything even a little spicy. Seltzer water actually helped, and I seem to be extra sensitive to sweetness, so even unsweetened flavored seltzer tasted a little sweet. (and yes, infusion day = Day 1).
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everything is starting to taste bland for me.
I ate so much yesterday just trying to find something that had flavor and nothing did 0 -
I am just on day 3, and I woke up today to make myself a cup of tea like always. My tea didn't taste like tea. My toast didn't taste like toast. Bleh. My husband made bacon and eggs and that tasted great. But then he peeled an orange and I had to leave the room, I couldn't handle the smell. Anybody have any clue how long this odd taste thing lasts? Is it just a few days and then comes back again each day 3, or am I stuck with it for the next 18 weeks?
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"Anybody have any clue how long this odd taste thing lasts? Is it just a few days and then comes back again each day 3, or am I stuck with it for the next 18 weeks?"
Not sure since I'm just on round 1 myself. I asked the January Group and they say it goes in cycles.
I can say that the weird tastes for me were days 4-8 (but I also had Thrush which didn't help). Right now I find that my tastes are off but not awful.
Sweet things are still sweet and delish (fruits, Jello, sherbert, etc). I also find minor spice tastes really spicy. For me this just seems like heightened tastes, I've always had a sweet tooth now Sweets are SO GOOD! I'm a wimp when it comes to spice so now even minor stuff seems super spicy.
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I'm 9 days past my first TC infusion. It's been tough! Bone pain for just a few days, then the fatigue hit me on day 5 and is just now letting up a little. I had to take 3 days off of work. Got thrush on Thursday, so more medicine to take.
I stopped the Claritin on Thursday since I no longer had bone pain. Not a good idea, spent this morning in the emergency room with a horrible rash on my neck and chest. It was extremely itchy and felt like it was on fire. My oncolgist called and told them I was on the way.
They think it's an allergic reaction to the chemo. So back on steroids and claritin and will meet with oncolgist to determine our plan.
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I'm sorry you had an allergic reaction to the Chemo and ended up in the ER. That's just the topper to a super crappy situation.
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Rose14- sorry to hear about a bad reaction. Hoping you recover soon and they figure out a good plan forward.
I am on day 5 (thanks to those clarifying infusion day/days...I was unsure!) and generally just feel run down and achy. I wasn’t too queasy, but food def doesn’t seem too appealing over the last few days. I’ve also been dealing with a sick household, a one year old with a fever/double ear infection and a 3 year old with a fever and throwing up. Not fun. Hard to be mom and make them feel better when I need them to keep their germs away. Luckily my husband has been taking it all on but I can tell he’s getting burned out with all the madness
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I'm on day 11 from my first AC infusion and finally I feel more like myself. I have 3 glorious days left until my 2nd infusion and I intend to enjoy them! I have to admit I had a few dark days where I couldn't imagine doing this 3 more times but now that I know there is light at the end of the tunnel, my confidence is growing!
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Rosie14- Yikes! I’m so sorry to hear about your reaction. I hope your doctor figures out what’s going on soon. I had a reaction to the taxotere and had to smy first infusion. My doctor switched me to abraxane. I’m trying my first infusion of that tomorrow. It’s prepared differently than taxotere and is not supposed to cause reactions.
Ajminn3- That really sounds rough I can’t imagine going through chemo with sick little ones I hope everyone is feeling better soon
Dysonsphere- Yay! I’m so glad you are feeling like yourself again. Enjoy the next few days.
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Hey everyone
I got my port on Valentine's Day and will be starting chemo this Thursday 2/20 (happens to be my boyfriend's birthday) and I am super nervous. I have a week of tests to get through first including heart echo, ct scan and bone scan before chemo. I'll be getting AC and I just don't know what to expect. I'll have 16 weeks total with 4 of AC and 4 of Tax and my last day of chemo is on my 33rd birthday (5/28)...I am trying to find the humor in that. I've got a long road ahead of me. 😉
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I haven't been on here more because I'm trying to take care of everything at home and when my fatigue hits, the last thing I want is to be reading or thinking lol. I'm happy I have zero mouth sores and I'm on day 12 after my 1st AC.
For those trying to find food that tastes good, I'm Cuban, so you guys might not eat this but I have been loving mashed potatoes and fried eggs lol. Boil the skinned potatoes with some salt, mashed them with a bit of butter once they are soft, then fry some eggs. It is the only thing that still tastes the same lol
I go back to my 2nd AC on Thursday even though I see my MO on Wednesday and will request chemo be moved to Fridays so I don't miss too many of my Thursday class.
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Butterfly - I am one month ahead of you - started chemo on Jan 21st and also have 4 A/C and 4 T - every two weeks, last chemo is on 4/28. I go in for my third infusion of A/C tomorrow.
I have posted on both this Feb group and the January group about my experience. I will be more than happy to answer any questions that you might have. If you are going to be having Neulesta injections I would suggest that you start taking Claritin daily now and ideally every day throughout your chemo - Claritin has been found to minimize/eliminate the bone pain that many people experience from the Neulesta. Everyone is different - I haven't experienced any of the bone pain - so its worth a try. I have been very blessed to have experience minimal side effects from chemo - I have been able to walk an hour or so every day. A friend who went thru all this several years ago told me to prioritize eating protein, staying hydrated and exercising so that is what I have been focused on. I do take naps, or lie down just to rest, especially on days 3, 4 (day of infusion is Day 1). I had my head shaved on Day 13 of first treatment, because I didn't want to see clumps of hair falling out. Good luck!
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maddy83f - thank you for sharing your experience. It helps to hear what's ahead.
Did you find that your SE and good/bad days stayed the same from Cycle to Cycle or was it more cumulative?
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Morrigan - yes, my SE's and good/bad days were the same for the two cycles I have had. I truly haven't had a "bad" day - but I have been extremely fatigued on Day 3 & Day 4 - I am guessing because of the Neulesta. As truly 'easy' as this has been on me from a SE perspective, I still am a bit emotional about having to go in tomorrow, and the same was true on day 14 last cycle.
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thanks for answering!
Right now I'm so anxious to get through Chemo that I wish my next infusion was this week.
I'll let you know how I feel next week when I go for round 2.
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