Topic: Starting Chemo September 2021

Sep 16, 2021 08:19AM DebbieM1958 wrote:

Hi again Ernnelson my treatments are also 3 weeks apart - total of 6 before surgery in January (masectomy). I am Triple Positive as well. My chemo meds are Taxotere, Carboplatin, Herceptin and Perjeta. What are you meds? I am one week post Chemo Session #1 and feeling a whole lot better this morning.!!!!!

Sep 16, 2021 10:13AM mindthief wrote:

Well, I'm on day 7 today and it's been a bit up and down, but I'm generally functioning okay at this point. I seem to have got most of the side effects (fatigue, constipation, headache, a couple days of achiness from the lapelga injection), but generally on the milder side, except that early nausea which was intense. I've been walking every day, and yesterday even got in an 8km bike ride. I'm very grateful that I'm off work and my kids are a bit older (11 and 15), so I can take advantage of the times I'm feeling okay and then rest whenever I need to. My hat's off to those of you who are going through this with other things on your plate.

DebbieM, glad you're feeling better! I've been napping as well, for the first time in my life.

oldladyblue, I got a second opinion but it was arranged by my MO (my pathology was weird, so she wanted it rechecked at a bigger research hospital). Both my MO and the consulting MO gave me a choice between AC+T and TC but favoured AC+T marginally and it was my preference to treat aggressively. It does sound like a second opinion would you help you get some clarity. I was told AC+T is the most aggressive treatment option, and does come with some small but serious risks, so I wouldn't go into that lightly especially if you're being told chemo may not even be necessary in the first place. I'm not sure if anyone answered your earlier question, but yes, the taxol is a separate part of the treatment -- my first 4 doses will be AC and then 4 of just taxol. I don't think it's typical to run AC without the T afterwards but I could be wrong.

Emnelson, welcome to the group! That's awesome you got your head shaved ahead of time! I wish I could pull off the bald look. I'm pretty sure I'm going to look like Mr Potato Head. In terms of food, I would just say to go easy on yourself. My intention was to eat very healthy but for a couple days I really could stomach nothing but crackers and some sweet potato. The general advice to go bland was accurate for me; on day 3 I had what seemed like very plain vegetable soup but not plain enough and I was tasting it for a full day afterwards...

Sep 16, 2021 10:41AM HummingbirdAZ wrote:

Mindthief--well, good to know I'm not a weirdo. Maybe it's the AC that does that. And I agree on the salty, too. Even though I eat a keto diet, one night I woke at 3am and gobbled down a bowl of tortilla chips like I was going to die if I didn't have it!!!

Sep 16, 2021 12:28PM Ernnelson wrote:

Thanks for all the food tips - I have chicken soup in the freezer as someone told me homemade soup would be good! I am worried about the water tasting bad that you have mentioned - that is my primary beverage!!!

DebbieM1958 - I am not sure what my cocktail is at this moment. My oncologist, who has been great, threw a bunch of stuff at me Monday & I did not retain anything except that treatment was starting 9/17😒 Its all so overwhelming!

Sep 17, 2021 12:24AM Melander8117 wrote:

Hi everyone,

This is my first post- I am late to finding this thread, but very glad I did! I started my AC+T chemo regimen on 9/2, and just had my 2nd treatment yesterday. My 2nd treatment hit me way quicker and harder than my 1st...but I'm hanging in here. Fortunately I had compazine to help. I saw some of you have naturopath/homeopath providers, and I would love to hear more about some things they recommend for natural/nonpharmacological compliments to help with side effects, especially the GI side effects. First time around I was battling constipation for the 1sr week after my infusion, followed by lots of cramping and diarrhea once I started to feel better and get my energy back.

I'm a single, working mom of a very energetic 4 year old who is a total mama's girl. That may be the hardest part of being sick and exhausted from the side effects, not being able to do all the things she wants me to do with her. I feel really bad about that. But I am very grateful to have a lot of support from family and friends, and I am very good friends and have a good coparenting relationship with her father, which helps tremendously. I am going to try to buzz my hair off soon once I am feeling up to it, because my hair started falling out quite rapidly a couple days ago. Her father and my mom are going to do it with me in solidarity, which I am very touched by.

Foods and tastes have been interesting. Like a couple of you have said, I have been craving only homemade soup- I pretty much ate only that and saltines my whole first week after treatment! I found an empty stomach really agitated my abdominal pain and nausea, so I try to have something at least small every few hours.

I've really enjoyed reading about each of you and your experiences. It is so helpful to know you have a community of people going through a similar journey as you. I look forward to continuing to follow you all on yours and provide solidarity and encouragement along the way!

Sep 17, 2021 07:13AM Spades2525 wrote:

First treatment today! It is so helpful to hear about what people are experiencing with side effects to make sure I am wrapping my head around that in advance. Mindthief- my kids are similar ages 12 and 15, and while I appreciate how self sufficient they are, emotionally this is hitting them very hard and it is more challenging to support their fears than my own most days.

I love the empowerment of shaving your head early or dying your hair bright beautiful colours. Important to take those moments of control when we can

Sep 17, 2021 06:48PM DebbieM1958 wrote:

Question to all my new friends on the diarrhea part of things. It is my Day 9 of Chemo Cycle 1 and I still have to take Imodium every day, at least once.. In fact, I've been through a whole box of 24 Imodium since this started. Anyone else have the same issue? When does this stop or is it just part of the new regime? Very small appetite but other than that I feel so much better. Hope everyone had a good day today. Oh, also today I had my first nosebleed, that was fun (NOT). Apparently pretty normal side effect of the meds. Subsided in about 10 mins. Checked with the nurse and she said yes, mucous membranes are all affected by these meds. Only an issue if it doesnt stop

Sep 17, 2021 08:55PM DebbieM1958 wrote:

I love this site - its a webcam of an uncrowded beach in Oahu - with sound. It's my happy place to go whenever I need a moment. Hope some of you will enjoy too!!! Happy Weekend

https://explore.org/livecams/hawaii/hawaii-pipelin...

Sep 18, 2021 07:29AM Melander8117 wrote:

Hummingbird- I didn't realize our courses were so similar! Thank you for the tips about zinc and the Turkey Tail- has the zinc helped with the taste of the water at all? I had a breast cancer dietitian recommend Liquid IV to help with hydration, but I found I can't drink it during my harder days because sweetness makes me nauseous. I was given a name for a well-liked naturopath in my area and am thinking of consulting with him to see if he has any suggestions for helping with my sensitive GI system. I teared up when I read that your boys surprised you by shaving their heads too. It feels good to have that support, that was really sweet.

I am feeling better today, thankfully. More consistent with my 1st treatment. I was able able get some sleep last night too, which was much needed. Steroid induced insomnia is the worst. Have any of you found anything to help with that? I meditate, which has always been my go-to strategy to fall back to sleep, but even that isn't cutting it.

Butterfly, I loved what you said about modeling coping for your children and showing them it is okay to not be okay sometimes. That is the best way to help them through this, showing them things are hard, and it is normal for the hard feelings to come along with it, and if you allow all the feelings instead of fighting them, you will feel better and get past them a lot quicker to the okay and even good feelings again. I am being as open and honest with my daughter as I can (in 4 year old language), to help her understand what is going on and why all these changes have been happening, and to show her it's okay to not be okay sometimes. She is doing okay. There are more meltdowns and needing me, but that was already there before the diagnosis, so it was expected while she adjusts to this new normal for a while. I've found that when I don't feel well my patience goes down the drain. It's hard.

DebbieM1958, thanks for that webcam link- that is really cool! The beach has always been my imagery happy place- when I was getting all my scans that were in tight spaces I imagined myself in the wide open beach and it got me through it really well. I'm sorry you ate having so much trouble with diarrhea. I had the same thing happen to me around days 8-11 after my first round. At first it was fighting constipation, then it switched over to fighting diarrhea after I was feeling better and getting my energy back, even though I'd stopped the constipation meds. Almost like chemo-induced IBS. I found that when I pushed myself too hard physically it happened more too. It did go away around day 11 or 12. I hope it has already begun to subside. What does your oncologist say?

Now that my hair is really falling out, I've started reconsidering wigs. My first reaction was that I didn't want to do wigs, it didn't feel like "me." I've never been a huge hair person anyway, but the more I have begun looking for scarves and hats it's become a little overwhelming...what have you all been planning for head covering, if anything? Any websites with good scarf tying tutorials or cute scarves, hats, or wigs you've found? I have no idea what I'm doing here lol

Sep 18, 2021 09:36AM - edited Sep 18, 2021 09:36AM by DebbieM1958

Ernnelson Good for you getting through Round 1. I had a similar reaction to the Taxotere and they had to give me benadryl as well - felt like I had a giant tickle in my throat and kept coughing. I am also on those same meds so lets compare notes as we go along - a 6 cycle regime, every 3 weeks. Now they are going to give Benadryl ahead of that med on my 2nd treatment. Hope your upcoming days are good - make sure to drink drink drink. Happy Saturday to all!!!!

Sep 18, 2021 11:29AM DebbieM1958 wrote:

How is everyone handling having visitors over? I have had my adult kids and 2 year old grandson over only in the back garden from a distance with masks. It's definitely better than nothing. If they come into the house for anything we spray door knobs etc with Lysol after they leave. Better safe than sorry I guess.

Sep 18, 2021 11:35AM DebbieM1958 wrote:

Melander8117 - I am feeling much better today - phew - no runs today so far and up until today I had been running there at least 5 times. I ate a normal breakfast. Fingers crossed for a much better day and the same for everyone here. Glad you enjoyed the beach webcam - I absolutely love it. We should have been travelling to Kauai in December but obviously that won't happen now. Hoping for next year December. Things to look forward to. I have a hat thing with hair extensions coming next week - it looks pretty OK, not quite my color but we'll see. So far on Day 10 I still have all my hair, although I think the nose hair must be going and who knows (or really cares) about the pubes..... hahaha.....gotta laugh at some of this stuff, right?

Sep 18, 2021 05:46PM Melander8117 wrote:

Spades2525, glad you are feeling better today. The exhaustion and fatigue are so real, it is crazy. I hope it passes quickly. I will say, I am really grateful for the additional nausea meds my oncologist prescribed. They have been really helpful after round 2. Do you have anything at the ready to help with it?

DebbieM- so glad you are feeling better!! And ha!! My thoughts exactly about the pubes! And I'm sorry to hear about your missed trip. I was supposed to be on a trip this weekend to see friends who live across the country. It's a bummer, but you are right- something to look forward to after this is all over. And we will appreciate it even more I bet. As for visitors, I am wearing a mask around anyone visiting from outside my "pod," and wiping things down afterward too. They have been respectful and gladly wear masks thelselves as well. I haven't had many of those though. I agree, much better to be overly cautious. My daughter started preschool this month, and although everyone wears masks in her class it still makes me really nervous.

Hummingbird, thanks for the tip on THC for sleep- I do have edibles on standby that a friend gifted me (it's legal recreationally here in Michigan), but it hadn't dawned on me to try it for sleep. I will try that tonight for sure. And thanks for the tips on the other supplements!

Sep 18, 2021 08:11PM swimgal wrote:

Butterfly47, this is the numbing cream I've used since I started my infusions. I apply it 60-90 minutes prior to therm accessing my port and I never feel anything. I cover it with Saran Wrap until I get to the hospital. Be sure to get something. No need to have that discomfort.

Sep 18, 2021 09:36PM Melander8117 wrote:

Butterfly, I feel your pain. I got mine Wednesday and it hurt like hell. But I realized today that it was much, much better. Barely notice it now unless I accidentally bump it. Hopefully your soreness is better by tomorrow. I also second what swimgal and Debbie say- numbing agents do wonders. My oncologist prescribed the same lidocaine cream that swimgal has- highly recommend!