July 2020 chemo club

brittonkb, that is too funny about the work emails! I have been working from home due to COVID. My boss is allowing me to continue working from home until after chemo and surgery recovery, which will probably take me into mid-December. During my brain fog days I also feel like I'm sending drunk emails, lol! I have a lot of staff that reports to me, and I feel so badly because I have them repeat themselves and clarify things so many times. I'm very thankful to work for a great company with excellent health insurance. I feel so badly for those who work in less than ideal situations or don't have insurance. That would be terrifying.

Melbo, I’m sorry you aren’t feeling great. Don’t forget there are options and to reach out to your team if Imodium isn’t cutting it! Imodium was all I needed to control things in terms of dehydration but my MO also added an rx called Bentyl, to try during my next round, which is supposed to help with the painful stomach cramping. She said it can be great but it’s hit or miss in terms of effectiveness; I’m hoping it helps and am glad I have something to try!

Has anyone had the experience of taking Claritin for the Neulasta and then NOT taking Claritin? I had asthma during my first round, which is usually well controlled just with Zyrtec. Since I can’t take Zyrtec and Claritin, my MO told me to just skip the Claritin and take tramadol if needed. My legs were achy but not unbearable during my first round, but I’m worried I’ll be miserable this round

Melbo: My Perjeta induced diarrhea starts usually day 4. This time I had constipation on day 3, felt great day 4, and day 5 the holy hell gates broke loose. Take the Imodium! I was able to get it controlled by mid-morning and was fine the rest of the day. After it starts, and I get it under control, it seems the rest of the time it’s manageable and I don’t need Imodium. I did get dehydrated, and I knew I wasn’t drinking enough fluids so I went in about day 8-9 and got a bag of fluids at my infusion center. That helped a lot. It can depend a lot of what I eat too. Greasy foods are a big no-no!

kimintx: Sorry you have to join us, but welcome! We are all here to help each other fight this nasty thing!

Kimintx - welcome! Certainly the club no one wants to join but better sharing experiences with others going through it. Sorry to hear it's also in your liver. Love your positive attitude toward fighting it! A good friend of mine has it in her liver too - we see the same oncologist who says never to give up hope and that he has “a bag of a thousand tricks". So many treatment options are available.

Melbo - sorry to hear you're not feeling well. Hope you're able to move past that soon!

I went for blood work today. Had my first infusion last Monday and second should be a week from now. My WBC was 2 and my ANC dropped from 5,000 last week to 640 today. Anyone else experience such lows? They said the ANC needs to be > 1,000 to safely have chemo so really hoping for a decent rebound this week! Dr gave me an antibiotic to take at even the slightest sign of infection. Wish me luck that the counts rise and no need for the antibiotic!

Thank you for that story! I love to hear this and gives me hope!

Smichaels: Best of luck with #3! Just think, you will be half done after this! I go before my infusions to get blood work...last time I went about 6 days before because I saw my oncologist that day. He had said my blood work looked great and I wouldn’t have to repeat it before my infusion. This time I go in Friday for bloodwork and then my infusion is Tuesday, I see my oncologist Wednesday.

smichaels - My oncologist office brings patients back for blood work mid-cycle just between the 1st and 2nd treatments. They said it's up to me if I want to come in between future cycles. Although I wonder if they'll want to see me next time too if my counts don't rebound quite a bit. I probably will do it either way, if for no other reason than to see how much I should stay away from my teenagers (and husband who now spends most of his days driving our teenagers around!). I'm actually staying with my mother in law right now until we see how things go. The MO is concerned about potential infection. Best of luck on your infusion today! Another one to check off!

Nottoday - Good for you for getting ahead on the hair front. I noticed more 'shedding' this morning. My 13 yo daughter (at least as of now) wants to cut and shave my hair so thinking may do that Sunday or Monday depending on how things progress and how I feel after infusion on Monday. I'm sure you'll get more and more accustomed to it in the coming days.

Welcome Kimintx! I'm Kim in Ohio

Welcome, Kimintx. We're here for you! This is a very kind, helpful and supportive group.

Evergreenman, thank you very much for the inspiring post about the woman in your support group.

Nottoday, best wishes as you go for your next infusion on Friday.

Smichaels11, yay, infusion number 3! Halfway through the chemo part of this whole experience. I hope all goes well for you today.

Brittonkb, hoping all goes well with your next bloodwork, and your infusion goes ahead on Monday. Your oncologist sounds great! I like his comment, “a bag of a thousand tricks!"

Melbo, I hope the lower g.i. problem has settled and you are feeling better.

Iamloved, I hope you are ok since your last infusion and fasting. (And I hope you enjoyed the Dairy Queen ice cream after your fasting!)

iamloved-I was having a hard time after chemo because I had a metallic taste in my mouth. I ordered water drops and have been adding those which has really helped my intake.

Iamloved, I find that keeping my water full of ice, with a few squirts of lemonade flavored Mio is helpful. I also use a straw so I can drink it really fast. I purchased a large, cute water bottle from Amazon that makes me a little happier while drinking it, lol!

Iamloved, today's infusion was pretty uneventful (just how I like it)! Blood work was good. I sat in the recliner for the first time. My other two infusions I was in a bed because of how long TCHP is, but it was pretty busy in the clinic. I didn't mind the recliner, it made icing much easier.

The only weird thing, and this happened during my second round too, was that about 10 minutes into the docetaxel it felt harder to breathe and my face was hot and flushed. It only lasted maybe 1 minute but it still freaked me out. I didn't tell the nurse last time, but I did this time. She didn't seem overly worried because it didn't last long at all. Anyone else experience anything like that?

I am in awe of those of you going through this with kids at home. I have spent most of the last two days sleeping on the couch with no energy to do anything and I know when you have kids that just isn't always an option.

My GI issues have been mostly controlled by Imodium and none have been as awful as the first day of issues. I feel like maybe I might have some energy today, although if I end up taking nausea drugs I expect I'll end up right back on the couch again. Hopefully I can at least eek out a few hours before I have to take anything.

Just to chime in on a conversation I mostly slept through -- my oncologist gets blood work 30 minutes before infusion. They just told me to show up early so they could run it before they start with the chemo.

I have lost 10 pounds in a week. I have the weight to lose and I'm not going to cry over it -- but it's still really fast. Food doesn't sound good. I am tracking what I eat and I make sure I eat several times a day, but with no appetite and an iffy stomach, the best I can do is usually something small. Water also doesn't sound good right now either, which is of course a problem with the diarrhea. I'm having better luck with gatorade cut with water than I am straight water, but I might order some sort of water drops to see how those work instead.

Hi everyone! I haven’t checked in much this 2nd cycle. My next infusion is Aug 20 and last time I was feeling so much better by now. That is frustrating. I have had much more diarrhea this time which is mostly been managed with Imodium but requires me to be close to a bathroom and really needing to increase my hydration. I also broke out in a chemo rash all over my scalp and nape of neck. It is really itchy and uncomfortable... and it’s unbearable to put a wig or anything on top of it. Between these two SEs it’s been a bummer of a week. I’m trying to get by each day and look for some small win. My daughter brought me over some coconut water.. I didn’t really like it before but strangely it seems refreshing to me now- I usually dilute it a bit with water. At least it is something different. With heartburn I really have not been able to drink carbonated beverages or juices. Take care everyone. I’m hanging on to the thought of the halfway mark next week