July 2020 chemo club

blusteryday: the wig looks fabulous! I hate that it’s so hot out, I don’t want to wear any of the ones I got either!

Star: I used the lint roller trick! After I buzzed my hair short and it was falling out, I would lint roller before showering...it seemed to pick up a lot of the flakiness and then got a lot of hairs. There seemed to be areas of hair that weren’t falling out and made me look like a little old man...like around my ears and back of my neck...so the lint roller really helped even that out so I could at least wear a cap in public. It’s so hot in Montana and wearing even the thin cotton beanies or hats that cover your head is hot and looks quite silly, I think.

Smichaels: I think I may have to put one of those razors in my next pickup order...I just feel like the rest of myhair isn’t going to come out...and it’s so at a strange bald/not bald stage! Thank you for the tip!

Hi Everyone,

I just made the cutoff, my first treatment was on July 30th. I am in a clinical trial, starting with 12 weeks Taxol as well as Herceptin and Perjeta. I have had a major issue with headaches and brain fog since my first infusion. It felt very similar to how I felt after getting a concussion. I was so out of it on Saturday I couldn’t drive. I was mixing words, dizzy, slow moving, zombie like. I was prepared for the physical but I wasn’t expecting to be so mentally confused and disconnected. Has anyone else experienced this?

Thankfully it lifted last night. Nervous for it to start back up after my next treatment

Hi all,

I started AC on the 28th and I'm on to day 5. The physical stuff hasn't been so bad, but I'm so fatigued, it's like I'm drunk. Foggy/dizzy that sort of thing. I can't concentrate on much of anything. Is this just AC chemo life? How out of it is bad? I can get up, walk around, do sort of regular things. But not much else. I can barely concentrate on a tv show i'm watching.

Thanks.

The brain fog, dizziness, etc is real! I don’t drive...and concentrating is so hard. I thought I would read a lot, do some knitting, have some little projects to get done during this, but my mind just can’t do anything... Getting myself up and little daily chores are about all I can handle. Lots of rest and sleep seem to help me as it’s not as bad during my second round...but definitely still there!

smichaels...

My genetic testing came back negative for now, there’s 2 VUS in a BRCA and another (I can’t remember what it’s called) but they said at this time it shows no recommendation for further surgery. Which I’m relieved it’s negative, but still means they do not know why I have the aggressive type of cancer that I have. Because of that, after spending a lot of time thinking about it and discussing with my husband, taking my age into account, I’m going to get a double mastectomy. My surgeon said right off the bat, I probably wasn’t going to be a candidate for a lumpectomy, because of the size of 2 tumors...but he didn’t rule it out. I just don’t want to chance this stuff being able to spread at all. Also, I only want to go through this one time. If getting them both removed means I get brand new boobs, no mammograms, and no chance of breast cancer in the other boob later in life, sign me up. My oncologist also expressed that was a very smart decision based off of everything. So as long as insurance is ok with it, so am I.

I also maybe found some relief into everything you put in your mouth tastes like complete crap... I actually made an appointment for the morning to go in and get some fluids at my infusion center. I know I’m dehydrated, I’m not hardly drinking anything...water makes me nauseous and I can only handle so much Gatorade. This afternoon I was told (by my loving husband) that our ice machine in our fridge does crushed ice. So I filled a glass full of crushed ice, added water, and a big slice of lemon...drinking it with a straw, and it truly tastes like heaven. I love water so much, I get cranky when I haven’t had enough...

BlusteryDay, Grffy38, Susan and everyone, there is an organization called Wellspring that offers an 8-week course to help with chemo brain/brain fog. Check to see if it is available in your areas. Also, there are variations of the MBSR programs for people who have cancer and that is helpful with brain fog. Many of these programs are online now due to the pandemic restrictions.

Grffy38 and Iamloved, hoping all goes well with your second infusions on Thursday.

Mtspacekace, hopefully the hydration appointment at the infusion clinic is helpful.

Smichaels11, I hope the appointment with the surgeon on Thursday offers information and options to help you with your decision.

I just went through 22 hours of hell. I told my husband last night that I refuse to go further with chemo, until my neurologist is on board and can manage my migraines. I’ve been under my neurologist’s care for 14 years and when he saw me this morning he was in shock, back in a April I looked healthy... and now I just, don’t. He said my migraines are most likely being triggered by the AC, based off timing and symptoms, so he switched up my meds and offered to admit me after my next round for migraine management, if needed. I feel better already just on the new meds.

It is crazy how the tingling in my hands, feet and mouth start, then the chemical taste in my mouth... and then the searing/blinding pain in my left eye that radiates to my whole head. Last time it happened on day 8, this time it was day 5.

Anyone else have migraines?

IamLoved,

The tingling started just before the migraine hit...so I’m wondering if it’s the chemo making its way to certain “levels” in my body? I’m not doing cryotherapy (gloves and socks) for AC because my MO said it isn’t necessary until I get to Taxol. Now, I’m beginning to wonder. My skin on my head and face get so sensitive that I can’t even stand the breeze from the ceiling fan blowing ...out A/C Bill is going to be horrendous!

I literally kept waking up last night and doing neuro checks on myself (I’m an old ICU RN) because I thought I might be having a hemorrhagic stroke...it was literally the worst headache I’ve ever experienced.

Aside from the headache... the awful taste in my mouth...like I’ve been drinking pesticide! I can’t scroll up to see who to thank,who recommended iced lemon water....but thank you.

Oh, BlusteryDay, the hellish misery of migraines AND chemo side effects...I am sorry to read you are going through that.

The AC chemo treatment you are receiving can cause severe headaches and sometimes reducing the speed of the infusion helps prevent this. I know migraines are worse than regular headaches, but I wonder if that would help with the migraines, too.

Regarding the face sensitivity: I used cheap Dollarama jade rollers chilled in the refrigerator. The first one was miserable because the slightest touch to the skin was painful, but after a few seconds I noticed relief.

I hope your neurologist can help you!

AnnaTheBrave, a reduction in your tumor after only one infusion. That’s awesome!

Hello, NotToday, and welcome! There happen to be a number of us 30-somethings with similar diagnoses in this group. I hope you are feeling well. I am also doing TCHP You and I are one day apart for our treatment cycles.

Hello everyone! I am day eight from my second TCHP infusion. I am feeling bummed out about my symptoms this round. I felt like they resolved faster last time. I am having fatigue, diarrhea and a continued mild nausea. It is just enough to make me feel bleh and not want to eat, but I am hesitant to take medication as it makes me feel foggy and I am continuing to work full time from home. I am really hoping the next few days I turn the corner. I am noticing the fatigue more, I really have to pace my activities. I am a morning person and before this would roll out of bed at 5 and run 3 miles. Now I am learning I have to start my day very slowly, especially with the low grade nausea. ugh. Some days it seems like this will be such a long haul.. this is one of them!

Welcome Nottoday and Britton! This is a very active and supportive group

I had my second appointment with the breast surgeon today. I have to say, her bedside manner is SO much better than my oncologist. I like my onco as well, don't get me wrong, but my BS just puts me at ease. My tumor has shrunk SO much - Almost 75%! She thinks I will have a complete response to chemo. Fingers crossed!

We talked about lumpectomy vs. BMX. Ugh, I am really on the fence about this. With lumpectomy and radiation, the risk of local reoccurence is about 5%, where it's about 1-2% with the BMX. There is also no guarantee that I won't have radiation with BMX, which would mean I could risk having to have tissue expanders under the muscle instead of direct to implant over the muscle that I would rather have. And the scary part is they won't know until I'm already under and it's too late. Reading the boards on this site, it seems that the majority of people opt for BMX. This decision is so tough!!

I have felt back to "normal" for the past few days. My 3rd infusion is next Wednesday and I am dreading it but know it'll be one step closer to completing this step in the process.

I am so sorry about this migraines, Blustery. I hope that gets sorted out soon and does not delay your treatment.

Thought I’d post a little more about my SEs since I know some folks are reading to get more of a sense of what’s ahead, at least with TCHP. If you’re already in the thick of it, my apologies as this will be long and boring!

I felt basically fine days 1-3. The steroids really help, I think, although I recommend taking your PM doses around 4 rather than at dinner or bed so you have less trouble sleeping. Started to have cramps and diarrhea on day 4, but it was only once a day and managed well by Imodium, and otherwise I felt tired but pretty normal. Took zofran a few times days 4-8 and it helped with just feeling blah. Felt like I had something stuck in my throat as well, which made even water uncomfortable to drink, but switching heartburn meds helped a lot. I was a nut about staying hydrated, and I think that helped everything. Felt pretty lousy days 7-8, like I was getting a sinus infection. Tired, achy, congested, low appetite. Not in bed all day by any means, just cranky and crummy. Started to feel better day 9. Diarrhea stopped day 10. Felt so good on day 13 that I had a margarita with dinner and am pretty sure that’s what sent me racing back to the bathroom all through that night. Bummer.

My mouth felt scaly and my tastebuds changed around day 4 as well, and the scaliness peaked around day 8 and then gradually faded until I noticed it was totally gone on day 13, but the taste changes have continued (and my MO said they will likely last through treatment).

My scalp got really itchy and oily and sore around days 5-7, but then everything felt back to normal. I’m on day 16 and my hair has not begun to thin yet. (I’m not cold capping.)

My hands and feet felt a little numb days 10-11 but I’m not entirely sure I wasn’t imagining it...so I’ll take better notes next round.

I got hydration via my port on days 9 and 13. Had bloodwork on day 9 and it was all within normal ranges (except WBC, which was high, as expected, due to neulasta). I didn’t need hydration but it seems to be my MO’s practice to hydrate the hell out of everyone! I’ll take it!

Good luck to all who are starting! The best reassurance I read before I started was from a woman on another board who said it isn’t a picnic but that it wasn’t nearly as bad as she’d imagined. That has absolutely been my experience. There are sooooo many things that your doctors and nurses can offer or suggest to help manage your SEs, so my other advice is to speak up early and often if you are having a hard time staying hydrated, feeling hopeless, have a weird or annoying SE that isn’t already being treated (or isn’t treated to your satisfaction), or are unable to carry on most days with a fairly reasonable approximation of your normal life! Oh, and I have found the infusion nurses to be pretty brilliant. They are real fonts of wisdom and I love talking with them. They have great ideas and advice. And the last thing is to take anti-anxiety medications as needed. They help with sleep, which helps with everything.

We’ve got you! You‘ave got this!