Starting Chemo December 2020

Hello - I'm new here and wanted to join the party. I'm generally more of a lurker than a poster, but may find that I start posting more often once treatment starts.

Hello all - I started November 4 and posting in the November 2020 chemo thread.

JulesFl - Mayo is great! I guess you are near Jacksonville. I am way down southwest in Naples/Fort Myers area and I am using local but I did get a second opinion at Moffitt in Tampa. How did it go yesterday?

Stukey71 - Hope today goes great for you!

I am having 4 cycles taxotere and cytoxan TC. I had two so far. November 4 and November 27 (delayed two days because of Thanksgiving). MY next two are December 18 and January 8. The day of chemo has gone smoothly for me. I can drive myself and I feel fine throughout. I am getting cold capping DigniCap so I have to stay longer. The biggest side effect has been the dry mouth and no taste but no mouth sores. I use Biotene toothpaste, mouthwash and oracoat xylimelts dry mouth relief moisturizing oral adhering discs. I have had an upset stomach - cramping but no real problems with diarrhea. The main thing that helped me is when I felt good for two weeks in between infusions. Just knowing that I will have two good weeks makes the one week of not feeling great manageable. I had headaches from not hydrating enough I think but I just can't seem to drink enough.

If you are getting Neulasta, take Claritin every day for a few days before and after. I had severe bone pains for two days after the first cycle Neulasta but this second cycle wasn't as painful.

I used icing booties to prevent neuropathy and tried to use the mittens but I think just holding frozen ice bottles work better for me. I can provide amazon links if you want.

Hi December Clubmates!

I'm 59, dx with IDC early November. Due to grade 3 and High Risk Mammoprint I'll be starting 4 cycles of TC on Dec 10th, then surgery in late Feb.

I'm trying to stay positive too, trusting in God and many prayers!

Stukey71, I'm praying for you today for peace and comfort, and will continue as the chemo kicks in.

JulesFL, you too, I'll pray for the coming days

Heck, I'm praying for healing and comfort for ALL of you!

marie914, I'm glad your side effects have been managable! Thanks for the suggestions. Have you lost any hair? My MO said it starts 2 weeks after first

infusion. Also, I was told the cold cap costs around $3000, even to rent. Cool idea about holding frozen water bottles, but ugh! That sounds uncomfortable.

Hang in there, everyone!

Laura

Hi Nicole,

My first chemo is without a port or picc. Port placement is several days later. Side effects are also terrifying me. The list is daunting and endless.

Flagmama - thinking of you on the 10th.

Nicole and Mochipie - When do you two start your chemo?

I had TC Taxotere Cytoxan twice so far and two more times. 3 weeks apart.

The side effects have been very manageable but I know everyone is different so what is not bad for one could be bad for another. I had an upset stomach for a few days but no nausea or smelling problems. Everything tastes bad for about 12 days starting at day 2. Just ate soups and stews and pancakes/waffles were good too. You have to find what works for you. My hair started falling out about day 20 of my first cycle just in time for cycle 2 but I am doing cold capping Dignicap so it didn't all all fall out so I wear it in a loose ponytail and wear a ball cap when I go out somewhere. I am trying to think of other side effects. I did have bone pain the first cycle after Neulasta but I was more diligent with Claritin and ibruprofen and it is was better the second cycle. I did have some times of fatigue but I also had some times of high energy - weird. This is Day 12 (day 1 is the day of infusion) and I feel pretty good. My taste is starting to come back but not all the way yet. I will be great for another 9 days when I have my 3rd infusion.

check in anytime. People have so many different side effects someone will have something that will help you.

I do brush my teeth with biotene, use biotene mouthwash and these dry mouth lozenges at night. I haven't had any mouth sores so far.

nicole_bei: I am doing four rounds of TC and do not have a port. I was told that there can be an increased chance of infection. They stick the tube it in on the back of my hand and it worked fine for me.

I learned a couple of things from my 1st round of TC.

Re frozen socks and mittens: one thing that helped me somewhat tolerate the cold (I so, so hate being cold!) was wearing a pair of hospital socks on my hands and feet inside the gloves. I actually had two pairs of hospital socks inside the frozen socks.

Re scalp cooling: I put a lemon drop under my tongue and just held it there. It distracted me a little and maybe gave me a little extra dopamine. The first 10-12 minutes were tough but then it got easier. The cold feet and hands were actually harder for me to tolerate than the cold cap.

If it helps anyone, I was expecting the TC side effects to be much worse than they were. I had antiquated visions of vomiting endlessly and being in bed for days, neither of which happened. The nausea was manageable with Zofran and Ativan. I was tired but still absolutely needed Ativan to sleep. I had a yucky taste and feeling in my mouth and rinsed with salt water several times a day. I was constipated and ended up taking Sennikot twice a day for at least the first week.

After Neulasta, I did have some of that "bony pain" in my back even though I took Claritin for a week before, but it was okay. That was over in a week or so.

My second treatment is 12/14 and I feel a little better knowing that the side effects (I hope) will be more tolerable than I was expecting.

Pubic hairs started falling out at around day 14. I am at day 16 and am bracing myself for shedding. The only real side effect I feel besides getting tired easily is dulled taste buds.

Hope this helps you know that you can get through this.

Take care,
Sharon

Thanks Sharon0706. I am still confuse why need cold capping..is it for special chemo se? Glad to hearing your se is manageable. I spent 3 years studying in Boston so excited to see people from Massachusetts.. I already prepared wig..no worry about hair loss. Just terrified about nausea and vomiting happened a lot with AC...

Hi there, I am joining the December club!

I just today had my port installed. I am pretty freaked out having this thing in me but I'm told after it heals up, you barely feel it. I have 4 cycles of A/C (I forget the long names but was told this is what everyone calls it lol) and then 12 weeks of Taxol. Theeeeen radiation. I am still waiting on an echo heart scan to be cleared to actually start the chemo but I'm aiming for either late this week or next week to start. Want to get this started and over with!

Nicole, from what my Dr told me with AC there is 100% hair loss. Some people are getting different chemo drugs that may not cause full hair loss so the cold caps benefit them. But will not benefit those of us doing AC.

I have a friend that is dying my hair purple soon and I'm going to have fun doing different things with it til it falls out, then I'm going to have fun with different wigs lol. That's my silver lining with all of this, I get an excuse to really go crazy with different looks!

Hi all. I am day 4 after my second TC and even though I am pumped up on steroids still I am feeling sad about my hair loss.

I've been using Paxman scalp cooling but have lost enough hair that I am finally starting to look sick.

I had already gotten a pixie cut prior to chemo, but even with the shorter hair-do, it was just such a pain to clean all the hair out of the shower and off the bathroom floor. I was spending what felt like ten minutes cleaning up the bathroom after every shower. Probably an exaggeration.

My hairdresser very kindly came to my back parking lot yesterday and did an outside buzz equivalent with scissors. I really don't look like myself and have taken to wearing soft caps around the clock. My husband supports this.

I thought an even shorter cut would just be easier. Which I guess it is? But STILL in the shower last night, as many times as I rinsed my hair and ran my hands through it, there was always still more hair coming out.

I can't decide if I should keep using the Paxman. I'm on a Paxman FB group and they will probably advise me to keep using it and remind me that the most shedding happens between rounds 2 and 3.

I remind myself that being able to wear a soft hat in wintery Massachusetts for the next several months is a gift of sorts, but today just for ten minutes I am not feeling like looking on the bright side.

Having said that, I am going to force myself out for a bundled-up walk while these steroids are still in my system. Sorry for the grumpy report but I imagine some of you get it.

Sharon

Sharon -

The hair loss is disheartening but at least it doesn’t hurt! I had shoulder length, naturally grey/white hair. Before chemo I had a backyard shorter cut and red for fun! Even with hair 4 inches ling or shorter I couldn’t stand seeing the long hair in my hands! Had my daughter use a clipper on six and it turned out pretty cute but the handfuls of tiny hair in the shower and sink! Yuck! And now visible bald spots. I bet i shave by next week. Ordered a bunch of head coverings. I hope I like them.

Rmayfair-

Having a port is weird. I think I feel it the most in my neck but so happy because my arms are hard to stick so anything that makes life easier! Enjoy the purple! We are allowed to be grumpy!

Marie -

Glad cold capping is working for you!

Ms Murphy-

Good luck with round one!

December is flying by! Can’t believe Christmas is so close! Hope everyone gets some joy in there life this month!

Lisa

Lisa1958 - If you find your scalp gets sensitive you could try this cap I found on Amazon by Caplord called "Satin Bonnet Lined Sleeping Beanie Hat." I swear I am not a rep. So far it's my favorite soft cap. It's big enough that when I sleep I pull it over my eyes and it doubles as an eye mask.

MsMurphy - good luck tomorrow. Re scalp care, I am using just a smidge of the brand Free and Clear conditioner on my remaining hair. Maybe reach out to the women in the chemo groups from earlier this year. My skin is so sensitive up there that I'm just leaving it alone for now. Have you looked into argan oil?

take care everyone.

Hi Everyone-

I am a newbie to this thread.  I am just starting TC chemo on Monday.  I got my port put in yesterday and I have some weird pain.  It feels like there is a sore spot in my throat - especially noticeable when I swallow.  Anyone else have this? I called the on call physician to check in and be sure it was nothing to worry about since they didn't mention it as a possibility. He thought it was normal as long as it doesn't get worse.

It does feel a bit better after I take OTC pain killers.

I am also starting with the dignicap and I am very worried about the cold headache.  My sister in law had bad headaches.  I hope I am not worrying myself into more symptoms!  LOL

-LB

Had a fun day yesterday. My cancer hospital has an Positive Image Center. Got an appointment to look at wigs. FaceTimed with my 2 daughters while I tried on wigs. We had a blast. Almost felt like a normal day. Went home with a wig. Not sure where I will wear it but it was a fun escapade and I could tell they really enjoyed encouraging me and telling me how great I look. Nice to have a good day.

Haven’t shaved yet. Very close but not quite ready

Marie, thank you for the info, I will look into it! My doc basically said to me that I would see other people wearing the cold caps during treatment and that I would wonder why I wasn't doing the same and she explained that it wouldn't help me at all. *Shrug* so I will look into it myself more!

Nicole, my first chemo is scheduled for Tuesday! Anxious but ready to get it started and closer to being done!

So have some of you had your port installed in your neck or is that just where you're feeling it? Mine is below my collarbone and almost in my armpit. It's still healing with the bandage on and can feel it tug a bit when I do certain things or chew in a certain way but I think it will be more comfortable once the bandage and stitching is out. Such a weird feeling though. But yes I agree that it seems a lot better than an IV stick all those times! I have only had the 2 IV sticks for getting this installed and the lumpectomy, so I'm cool not having any more of those if possible!

Interesting and helpful info about the hair! I have long hair and shed a lot so I am used to having a lot in the shower, but was unsure how it may actually come out. I guess in my head I see it all cleanly falling out all at once, not here and there but that makes sense. I have a friend on hand waiting to buzz me whenever we get there! Purple fun hair happening tomorrow!

LBARKER, were you knocked out for the port install? I had a sore throat for about 2 or 3 days after my port was installed but it was because they knocked me out and so I had the breathing tube that cause that.

Lisa that sounds like a fun day!

Hi..shaved what was left also😢..can't look in the mirror though. I found some cute turbans on Amazon, they are soft and comfortable. I use the twisty turban hair towel in the shower. Glad I purchased the wig already, just have to go back to the salon for a final fitting. (They are great and also have private rooms for wig fittings 💖)

2nd treatment finally tomorrow after having...C19 😨, what. a. trip.