July 2020 chemo club

I'm pretty sure we all live in fear of recurrence, even those of us with a pretty good prognosis. Having a higher stage is terrifying I'm sure. I'm so sorry that it's something you, or anyone, have to live with KMom. This disease is just so scary, sneaky, and depressing. I think the only real answer is that humans are shockingly adaptable and you learn to live with a lot of things. That doesn't make it any easier though.

I am day 13 of round 2 and my exhaustion has finally eased some. Just as that backed off though I got a weird rash on the backs of my hands. It feels like my hands are sunburned with areas that hurt more, feeling almost like they are singed around the edges. Hives have also come and gone periodically. I'm sure it's a weird presentation of neuropathy. I've tried several over the counter pills and creams so far and nothing really seems to touch it. I have a call in with the symptom line and we'll see what they have to say.

Also, for anyone else struggling with hydration because water tastes gross -- I have had a lot of success with watered down advanced care pedialyte. I use 1/3 pedialyte and 2/3 cold water and it makes the pedialyte palatable. I tried drinking it straight and it was awful.

Susiemommy, as far as I’m concerned not too late, and I’m totally certain everyone else will say the same. It’s a pretty nice group! Sorry you have to be here, but welcome nonetheless.

I was drinking gatorade at first, but it was a little hard on my digestive track and since I'm also struggling with the big D I decided to try the pedialyte that the nurse recommended. The big warning with the pedialyte is that it is sickeningly sweet by itself -- I have to dilute it a lot to make it palatable -- but once it's diluted it tastes okay and more importantly, it's much easier on my digestive track.

Iamloved -- hearing your struggle with perjeta makes me worried. My diarrhea has gotten a little worse this cycle (only cycle 2 for me) and the Imodium is starting to struggle some to keep it under control. So far the most Imodium pills I have taken in a day has been 5, but I took those 5 pills in 4 hours, which was disturbing.

Welcome Sussiemommy -- it's a terrible club to join, but we're happy to have you here.

I had infusion #4 late on Tuesday because of the holiday Monday. I seem to be more tired and my taste buds are gone already. That makes me sad. My blood work was down in the dumps a bit...but still able to have chemo. They will watch it next time and may need a transfusion. My potassium was also low, so they prescribed me with some giant horse pills...which I can not handle. My Angel of a pharmacist is checking on some different pills or a powder I can take instead.

I got the ok time make an appointment with my surgeon again around the first of November, so schedule surgery for later that month. Happy holidays of recovery for me! Which includes my birthday. Oh well, at least it will be done, and hopefullY covid disappears and doesn’t prolong this process.

Welcome susiemommy... this is a very supportive group, I hope you find it helpful

I'm really late, but I'm joining in. I've been lurking here with you a bit and decided I should make my presence known. I just finished my 4th chemo treatment today. It was a bit rough to gear myself to get back there today. Cycle 3 was pretty rough. The fatigue lasted a full 2 weeks and I never got back completely like I did the first 2 cycles. They diagnosed me with an UTI today so I'm hoping that was a primary reason for the extra fatigue. Hopefully the antibiotics clear it up quickly and this cycle is a bit better. I also met with the surgeon today and have to start thinking about what I want to do for reconstruction. I'm having a masectomy on left breast only. Do I want an implant or should I do the DIEP? Pros and cons to both so I need to figure that out. Thanks for letting me come in late. This cancer thing really does run you down and is not easy! You are all warriors!

KMom- I do find it gets mentally tougher as time goes by. At first, I was all "I got this. I'm a strong woman! Let's go!!" type of stuff. Now I'm just tired and frankly bored with the whole situation. (Tired mentally, not just physically.) It just drags on for so long. I spent the whole summer dealing with it and I still have to deal with it all through the Fall. So I get the sadness. It is hard to find joy in day to day life at the moment. I keep telling myself to look at the long game, but that doesn't mean I don't get sad and quite frankly, bored with the whole thing.

Hi all,

Going in for my 4th and final TC round tomorrow. Round 3 was a little harder than round 2, and as my MO predicted, took a bit longer to recover. but not significantly. I was mainly tired and out of breath longer.

Kmom, I hear you on the emotional part, round 3 was harder on that front. I just got impatient about everything and not my usual self. But I'm hoping that knowing this is my last round will help me be more calm this time. I am a little "excited" about getting this done, even though the nasty week is still ahead of me.

After I'm done i'll need a second surgery (tumor was taken out in May) to remove a small area where margins were not clean. Then, 3 weeks of radiation, then 5 years (at least) of hormonal treatments.

And speaking about hormones, I've been getting hot flashes this past week. I don't mind them during the day but they wake me up 3-4 times a night. I'll ask my MO about handling these, but have any of you pre-menopausal women started experiencing this? My sleep is my lifeline and not sleeping well is making me annoyed and extra tired.

Wishing everyone an easy cycle. I hope the smoke and fires here in CA and elsewhere are over soon so we can enjoy the end of summer.

Stay strong!

Jenny2318 - welcome. I see you’re also in Maryland. I know it’s a pretty densely packed place with a lot of options for treatment, but I’m being treated at the Anne Arundel Medical Center.

KMom — I have round three next Friday and I am dreading it. I have also started to struggle with the boredom and the impatience for all of this to be over already. It all just gets so old so fast! I don’t go anywhere, I can barely do anything, I have nothing to talk about except the extra special way I happened to feel lousy on that particular day.

Which, speaking of the extra special way I have felt lousy the last couple of days... I have had a horrible rash on my hands, which later showed up on my feet and knees. It comes and goes but it’s periodically itchy and has hives or my skin feels like it’s scaly and raised. It’s awful. I have called the nurse line several times and after a few different attempts they told me to use cortisone and benadry, which helps some. When it finally showed up on my face I got a prescription for steroids which I need to start today. I am dreading the side effects of the steroids. I also have an appointment with my oncologist this morning to him the rash, but the paranoid, depressed part of me assumes it will disappear by the time of the appointment and I will jus took like a crazy lady.

Apparently Maryland is a popular place to get breast cancer. Who knew.

It turns out that my MO, along with 9 other doctors, is leaving the Anne Arundel Medical Center but can't legally tell me much about why he's going or where. I do have a choice though: go with him or stick with AAMC. The problem is that I like both. The only doctor I have seen consistently so far in this process has been my MO and he listens to my questions, makes sure I have space to ask questions, and explains everything in ways I understand. I really like him. On the other hand, my care has been seamless at AAMC. and I have never once had a question about what comes next in the process or who I needed to be talking to. It is a little disturbing that 10 doctors are leaving at once though... Anyone have thoughts?

Also my rash is a random, rare, allergic reaction to... something. There are at least 6 drugs I'm on that could cause the reaction and since one of them is the chemo itself, it makes it hard to do any sort of elimination. The plan for now is to try to control the symptoms the best we can and i do a certain amount of sucking it up. The good news is that it's much less itchy and less widespread today so that's something.

Melbo: Perjeta gives me a rash. It has gotten better over time but a day or more after every infusion I get a rash over my eyebrows and a few spots on my cheeks. I was prescribed a lotion that really helps. BUt yours sounds much much worse. I hope you can find the cause and get relief.

Happy Saturday ladies!

I’m so sorry to hear about the stress you Marylanders are going through with your oncologists. You’re already dealing with enough. Hope the decision proves to be an ‘easy’ one for you if that’s even possible.

I’m also sorry to hear about the emotional toll this has taken on many. BC is certainly the most significant thing I’ve ever had to deal with in my life. While I feel pretty upbeat most of the time, I’d be lying if I said there weren’t any emotional times for me too.

I go for my 4th AC infusion on Monday. I’m trying hard not to focus on the 12 weeks of Taxol ahead and instead celebrate the end of AC. I dread the upcoming bone pain and just can’t wait until it’s over. But feels like a milestone!

I hope everyone has a Wonderful weekend ahead!

BlusteryDay, it appears I am doing the same chemo regimen as you. Even though I've only done the first round of Taxol, I find it (so far) to be so much easier than AC. Also like you, I had HORRIBLE headaches with the AC - and I do not have a history of migraines. With some modifications to my premeds and the addition of fluids, that eventually got straightened out. Maybe you've researched or your doc has already told you, the premeds for Taxol are to stave off an allergic reaction - which they will still watch for carefully your first time. At least that's the protocol here in Louisville. The worst part for me was the double dose of Benadryl. I don't know that I've ever taken it before, but WOWZA. The overwhelming (and competing) sensations of drowsiness and restlessness just about drove me mad. My advice is: if you can go to sleep when you first start to feel it - go for it. Anyway, that passed and the rest of the infusion was pretty unremarkable. I've only had occasional little twinges of bone pain since then - not enough to even warrant a Tylenol. BUT, my second round had to be canceled because my blood counts were so low (which was really annoying because I was so ready to rock and roll and get this thing over with!). But the nurses were simply aghast about different aspects of my labs and kept dangling the threat of a blood transfusion over my head, so I got the week off. Did you do the Neulasta following your AC? I did, and now I will have to have a daily Neupogen injection following each Taxol treatment for the same reason. As for those red blood cells, I don't know that I can do anything more than what I'm already doing to try and boost those. Still trying to run my ass off (there's more than now than there used to be - thanks chemo!), and increasing red meat in my diet (mixed feelings there). OH, and for the icing hands and feet, I'm looking now for some thin cotton gloves to wear under the icing packs. From what I understand and my one experience thus far, direct contact is just not sustainable.

iamloved — not off topic at all! I kind of hijacked it a bit with my medical center stuff. My nails have been surprisingly fine with treatment and are still growing and need to be trimmed occasionally. I am not icing during treatment