July 2020 chemo club

Send back home without the therapy. My blood cell counts are too low

AnnatheBrave -- I'm definitely feeling the emotions today. I'll have two or three good days where I know I can handle all of it, and then a day where it just feels so overwhelming -- and of course this is still pre-chemo days for me.

Does the TCHP usually also include steroids? I've seen several people talk about their affects, but the oncologist didn't mention anything about them.

It turns out they couldn't get me in for port placement until the 7th. So now the plan will be to arrive at the hospital at 0530, get the port placed at 0730, and once I have recovered enough to walk, someone will walk me over to the chemo suite for my first chemo treatment. Anyone else go through this? It's clearly something they have done before because they didn't think much about scheduling it this way -- but it's going to be a really long, exhausting day.

I had my bone scan yesterday -- it came back clean (as expected), which was at least a nice confirmation. I was super frustrated with the tech who gave me the scan though -- she didn't explain anything about the process or what to expect. She told me to lay down, breath normally, but other than that hold still. No explanation of how long each step would take, no heads up that I could relax/wiggle between images, nothing. It was frustrating. Luckily they sent me a survey of how the procedure went.... I shouldn't complain too much though -- overall the breast center I have been going to has been awesome and supportive. So far I have never had questions about what comes next or what I need to do, but I also have several people I can contact if I do have those questions.

Star...I got the wigs from Heatherdye.com or she also has a Facebook group Wigs for every woman, where she does fun live videos and you can snag some good wigs. I’ve never worn a wig before, but they fit snug, are different sizes so you have to measure your head, and they pass the headbang test!

I felt out of sorts on the steroids after my first infusion...barely sleeping, couldn’t nap, but I think it was first day of chemo jitters. This second time I’ve been able to sleep and much more tired! With TCHP I have steroids the day before, day of, and day after the infusion. I met with my infusion nurse and oncologist a week before my first infusion and I had a whole list of questions to ask them, they sent all my prescriptions, and explained them to me, and showed me the infusion room.

Smichaels11, thx. I should do the lab again tomorrow and we'll see. I did the lab on July 28th, and I'm a bit skeptical it can significantly change in 3 days. No vitamins, supplements or anything... just regular food an activities. And you're right about the frustration. I've finally (kind of) gotten over my hair loss, and now this.... I knew it wouldn't be easy, but sometimes I need more time to process multiple bad news ...

Melbo, that's great your bone scan came back clear, although it sounds frustrating that the process wasn't explained to you.

I have heard a couple people say they had their port put in the same day of their first infusion and it went well. They said the i.v. sedation for the port made them sleep through part of the infusion which they liked because it made the time seem faster.

Thx Sharon, nothing special about the food - just healthy food with a lot of fruit and veggies. I've also googles for the recommendations. Unfortunately, in my Oncology center, the staff is not over-attentive

I'm just finishing up my 2nd infusion. Things are going pretty well. At my provider visit my physical exam shows an approximate 40% reduction in primary tumor size after just one treatment! That is great news. I had my labs done and my hemoglobin dropped 2 grams in 3 weeks so we will watch that as it is causing some dizziness. It’s likely from a never ending period since getting my 1st infusion 3 weeks ago. Everything else is looking good. I did have a reaction to one of the drugs in my chemo regimen (Likely herceptin) which caused me to feel like I can't swallow. That was fixed with more prednisone and some Ativan. That should mean later today I will have a lot of energy to clean the house but be relaxed enough not to care. Haha. All is well.

Thank you all girls for your payers and nice wishes.

IamLoved, you look perfect! And the wig looks very natural.

I got used to the 'new me' in less than 2 days. Although I still haven't seen myself without my head covered. It takes time for me, but I'm in no rush.

As for the fasting, I don't have experience with that. I ate more or less normally, reduced meat a bit and increased fish. A lot of fresh fruit and veggies, included pork and chicken liver. Completely thrown our sugar, sweets. White flour replaced with buckwheat, graham and spelt flour). No fried or fatty food (I haven't eaten these earlier, either). My leukocytes dropped from 4.7 to 3.4 (normal values 3.9 to 10.0), and my neutrophil granulocytes dropped from 2.3 to 1.3 (normal values 1.6 - 7.0). And that's just after one therapy.

Maybe you could do a lab check some time before the next therapy is due, so you can reconsider whether to continue fasting or not.

Trynryan, a 40% reduction after only one infusion. That’s great! I am very excited for you!

Did anyone feel kidney pain on both sides of their middle back after an infusion? My infusion was a week ago, but I am only just feeling that discomfort today and yesterday. It's mild so I am drinking a lot of water and resting.

First time tomorrow. I’m so scared. And feel so alone. I’ve read everything I could, thinking if I could know what to expect I could do it. But right now I’m honestly not sure I can. Scared about the whole day, but even more scared about the days after. I’m a single mom. No help becaus of covid.

Brittonkb, welcome and wishing you well as you get a port and your first infusion on Monday. There is a very supportive group of women here!

Kmom, I’m so sorry you’re going through this alone. I can’t say it any better than the ladies before me... prep when you can and just do your best, even if it IS just popsicles or frozen pizza for dinner.

I have been absent since last week, only because I was relishing I’m feeling so GOOD. I have been fortunate the last 4-5 days and have napped a little, cleaned house, caught up on laundry, prepped meals and grocery, etc. I don’t remember feeling this good within the last year.

Today is AC infusion #2. Yes, the long commute. My husband is driving me to/from. We are so fortunate that the company he works for has a branch office near MD Anderson in The Woodlands, so he can work there while I’m in clinic. So many others are having to sit in the blazing TX heat in the parking lot, cars running...waiting. And it makes me so angry about Covid and lack of appropriate response and adaptation. On a good note, my feathered children are near the clinic, too, so he can go check on them for me today.

Sharon2020 - kidney pain...your question caught my eye because I had right side flank pain on Day 9, that scared me and made me question a kidney infection. It did go away once I repositioned and relaxed in bed, so mine turned out to be muscular but I’m still asking the NP about it today.

Biggest, most bothersome side effect for me: my migraines/headaches are back after being controlled by diet (Keto/low carb) and exercise for the last 3.5 years. So more tweaking needed there.

I’m thinking about all of you!

Kmom, way to go! Yep those infusion rooms are COLD! Hopefully they were able to give you nice warm blankets (or next time take your own). I hope you get plenty of rest today and know we're thinking about you! Many of us have 6 infusions plus a year of immunotherapy in our future, so you're already ahead of us

Blustery, that is awful that the caretakers have to wait in their cars!! My SO drops me off and picks me up since we're only about 40 mins from the clinic, but there is a sitting area he could wait in if he needed to. This whole COVID crap is really changing everything. I would really love it if he could sit with me to keep me company and see what is happening. Our spouses are a part of it too, ya know? I will be sad ringing that bell in October by myself.

Sharon, that was weird about your kidney pain! I hope it was just one of those weird body pains we can't explain and mean nothing.