July 2020 chemo club

KMom57: Many positive vibes to you today! I did not feel confident headed into my 3rd infusion, but everything went just fine! One foot in front of the other, one step at a time!

I really hate these few days post chemo. Everything tastes horrible, I’ve got the bone tingles from the neulesta, and am restless...my head is dizzy and my vision is blurry. I don’t do much, which makes my days go by at a snails pace. I did get up, make a frozen waffle, shower, and washed bedding and my blankies. Now I’m binge watching This Is Us... I just have to keep reminding myself that the better days are coming!

Many positive thoughts to all you ladies!!!! I hope everything is going well.

KMom57, so very sorry to read that you are having a difficult day. I wish I could do something for you. Hopefully, the cap was in place long enough to still keep your hair.

The final analysis, the day was horrible horrible horrible. The nurse, as it turns out, has less experience with cancer than I do (in onco since March), and worse, seemed unwilling to ask for help. Among other things, she told me I was getting Taxol. She couldn't get the cap on right and blamed it on my “small head" which made my sister laugh as the bigger than normal heads in our family are a family joke. She tried to add time to the pre cool because she started it 15 minutes before premeds so of course it finished early, and in the process of fixing it she appeared to have rebooted the machine and couldn't get it back on. Then invalidated my card. Had to turn it off, remove the cap, start the whole thing over with their card and the DigniCap rep giving instructions over FaceTime and saying in a worried voice, “you need to hurry." A low coolant problem. Said the machine was telling her as she added the coolant that she didn't do it fast enough. And she didn't ask for help. I didn't know she had not resolved that. Later she Told the rep the coolant cap kept popping off which she had failed to go ASK anyone what that meant.

Thirty extra minutes of precool and then unpaused taxotere due to the restart which pushed the day out to 5pm. Tried to tell me post cool was 90 minutes while I insisted it was 120, which the DigniCap rep confirmed was correct. It is 120. The nurse mgr got involved, helpfully told me that “you know DigniCap doesn't work 100 percent," in other words, “if you lose your hair it's not our fault," despite the fact the MO had just told me if I had only minimal shedding in round one, which I did, I wouldn't lose much over the remaining rounds.

Then to top it all off, no pun intended, I found out to my surprise after finally pressing the call button because the alarm had been going off for ten full minutes (I timed it), indicating I was done, that she had LEFT. Like FOR THE DAY. Left me sitting there attached to the machine knowing I only had five minutes left on the timer when she came in to remove my IV, without telling me she was leaving or who, if anyone, would be there to help. A very nice male nurse came in and said “well, I think I just disconnect you." I don't know what else to say. Except it's highly highly unlikely, I think, that I will have any hair left for round three. Which sucks so bad because it really really worked for me, which the MO confirmed. I'm both angry as hell, and devastated.

Thank you iamloved. I’m devastated. If I keep my hair through that, it will be a miracle. And when I say it was working, I’m on Round Two and haven’t had enough shedding for anyone to even notice. Including me except for one spot near my forehead part. None on my pillow, ever yet, very very little in the shower. I get a little bit when I brush but honestly not even as much as I shed when I started letrozole. That was far worse.

Kmom57, so sorry to hear about your bad day. It really sounds like an annoying experience. I'm also cold capping and I know how stressful it can be. Try to stay positive, you at least had cooling some of the time and maybe it will be enough to save you hair.

I would however make sure if you go back to that facility, to ask for a nurse that knows what she/he is doing.

I'm crossing my fingers for you and for your hair. And I hope this cycle isn't to hard. Stay strong.

Happy Saturday!

Kmom - so sorry to hear about your horrid experience yesterday! I can only imagine how frustrated you must be. Hoping you keep your hair and things only get better from here.

SMichaels - thinking about you ... I believe you were to get an MRI but can’t recall if you’ve already had it. Hope things are looking up for you.

I had my 2nd infusion Monday with Neulasta patch releasing on Tues. My bones really hurt on Wed! Weird too - more like my jaw, neck, clavicle, etc. - not what I would have expected. I probably overdid it by going to my daughter’s golf match that day but am trying really hard not to miss my kids’ activities. I’ve been taking Claritin and it seemed to work with the 1st infusion. Pain lessened by Thurs and gone by Fri.
I’m looking forward to the next week with no treatment. My kids start back to school (in person) end of next week. Anyone else’s kids going back to in school learning?

I'm so sorry to hear about your horrible experience KMom -- it sounds stressful and awful. Hopefully you still have a good outcome with your hair.

My husband shaved my head yesterday (Sunday). We just buzzed it down for now, we'll follow up with the razor in a few days once the rest of it gets patchy. I was obsessively running my hands through my hair Friday and Saturday fascinated by the sheer amount of hair coming off of my head, which of course led to some bald patches. I am going a slightly different direction than some of you -- I haven't purchased a wig and I don't think I'm going to. I have a few head coverings to wear if my head gets cold or I'm going somewhere and I want to try to blend a little better -- but for the most part I'm going to rock the bald is beautiful look. My two best friends -- we've all been friends for 25 years now -- are going to shave their heads in solidarity.

For the most part I have felt pretty good for the last several days. I'm mostly not taking nausea meds or anything other than Imodium. I have had energy and could focus on things, which has been a nice change. I go in for my second infusion on Friday though, so this is all a reprieve.

I hope you are all doing well.

Thanks Melbo. Love your smile in that photo. I’m on Day 4 post infusion #2. Feel ok. Except I have an elevated alkaline Phosphatase again, up from last time, so I have PET scheduled for weds. I’m pretty scared. And mentally/spiritually exhausted.

Hello Ladies!

Melbo... You look beautiful! Kmom57.... so sorry you had to endure that! I will be praying for your PET scan.

I had my 3rd chemo last Thursday. I was about 10 minutes in my infusion and I started to feel really weird. Back hurting, tingling, strange sensation over my body and just overall weird. Well, called my nurse and she ran in there with every other nurse and then they went and got my doctor. Come to find out, they did not give me the steroids. My doctor was trying to see to skip it this time so I would not get insomnia. I have never complained of insomnia before so i would have liked a little heads up that they were skipping that med. But, I ended up getting the steriods and then I did just fine after that. So, I will ALWAYS be getting steriods from now on. So, I go for my 4th Chemo on Thursday. Hopefully, the 2 hurricanes heading our direction will not cause me to have to cancel it. UGH. I still have had no bad side effects from Chemo. I might feel a little achy today, but, I never know if it is in my mind, chemo or cancer has spread more (God forbid). Such a roller coaster! Thinking of you all in this process. Prayers for ya'll daily!!!

Melbo: you are absolutely beautiful and rocking it!!!!

What started out for me, being an infusion #3 filled with rainbows and butterflies...has kicked me in the butt! I have not felt this bad this entire time... Even though I was able to take half doses of the steroids, I have not been sleeping or napping. Maybe it’s because I have not been doing anything, but I feel too bad to do much of anything. I had a really nauseas dizzy spell Saturday and had to lay on the bathroom floor for a while with my pillow and blankie. I haven’t gotten the diarrhea this time, but I’ve been constipated, but I’m afraid to take much because I don’t want to go too far one way or the other. I thought I had this all figured out but then it changes! And again, food is so terrible. Even my stand-by yogurt that has been tolerable I could barely stomach today. I’m making some curry stew, to put on top of plain white rice and am hoping and praying that I’ll be able to eat some of that. My husband did make some halibut last night and I was able to eat a bit of that. I get to go in tomorrow for fluids and that I’m hoping will be my saving grace. Being down and out and feeling this bad for a week is for the birds!

Here’s hoping that you ladies are having an absolutely fabulous week! Cheers!!! (With my pink sugar free Gatorade...because I couldn’t even imagine what a White Claw would taste like right now!!!)

Hello ladies!
I’ve been a bit MIA since my treatment on the 14th...you know life🤷♀️. Dealing with virtual/homeschool for my 1st grader, my 3 year old and working full time.
so much to catch up on but I did read everyone’s posts.

My 2nd infusion is went well on the 14th and I did not experience as bad of symptoms as the first time. I am now dealing with a terrible face rash which I did get last time. It lasted about a week so I’m thinking it will be the same. Anyone else dealing with the rash?? Other than that I still experience an overly salty taste with a lot of food and a little dry mouth. I did meet with a plastic surgeon the other day and it seems so overwhelming to decide on who to pick for a plastic surgeon. What is everyone doing with surgery?

Not functioning well today. At all really. Physically fine. It’s like I’ve hit an emotional and spiritual brick wall. I can’t even drag myself out of bed.

Hello all,

Nottoday...- yes, I had a bad rash after treatment 2. My oncologist said it was actually two different things- Perjeta rash on face that was like rosacea, and folliculitis rash on my head and neck. It was pretty miserable. At the time it was suggested I take antihistamine and use hydrocortisone. After I showed her pictures when I came in next she said I can get an rx if it happens this cycle. Lesson learned for me that a picture is worth a thousand words!

I am day 6 round 3. Finally feeling less brain fog and a bit more energy. I work FT but have taken a nap after work and gone to bed at 8pm most nights since chemo! I am grateful it is just me and my husband and I don't have little kiddos at home!

I will be meeting with a plastic surgeon soon, yesterday I got a vm to schedule. I too feel a little overwhelmed. I have been so focused on just getting through this first part (chemo) that I have not allowed myself to start thinking of the many more steps of this process I will need to take. It makes me feel a little weary.

Kmom, hang in there, I have had some of these days.

Mtspacekase hope you are feeling better now. I am always checking out how you are doing because we have the same treatment but you are a couple days ahead of me!

It cleared up a lot of it. The nurse said to take the Claritin with the Pepcid though — something about how the two drugs targeted different things causing the rash. She also said I could use hydrocortisone cream on my chest and neck, but she didn't recommend using it on my face.

Melbo—best of luck today! My SEs after my second TCHP were not worse, but they were slightly different. Diarrhea was a little better (as were cramps, which I attribute to the addition of Bentyl), nausea was a little worse. Fatigue, as promised, was worse but not significantly. Burned mouth feeling was much better, but weird taste lasted longer. Now I’m dealing with very sore eyes and a runny nose, which I think is a cumulative side effect of taxotere. Some numbness in my toes also lasted longer this round. Annoying but not major SEs, so I’d generally agree that the second is not markedly worse than the first.

The one thing that was a significant change to me was my mood. I felt much more irritable and pessimistic after my second infusion. Irritability is a legit and significant and under-discussed SE (plus it’s a SE of the SEs too!). Kmom, I wonder if maybe you are feeling low as a response to the drugs and not solely as a response to the shitty situation. Either is 10000% valid and real—I only mention it because it can be helpful to consider that you might feel better as you get farther from the last infusion. It helped me to keep reminding myself that I would feel better in a week. It also helped to take a low dose of clonazepam, the anti-anxiety medicine I’ve been prescribed, which just made me feel a little calmer and more patient. It didn’t occur to me to try this until later in the crappy SE week, so I’m gonna try taking a low dose as needed earlier on next time.

Good luck to all!