Oct 2, 2021 05:48PM AnnieG11 wrote:

oh, Aleta, I’m so encouraged by your post. I just started my first treatment last Tuesday and have been totally exhausted all week. Can hardly get out of bed. Dizzy. Weak. We are on the same regimen so I am looking forward to feeling better, hopefully. Please keep me posted.
I was feeling so unwell I started getting almost panic attacks which I have suffered from previously and take Paxil for. It always worked until I started the chemo and now I am trying to control my anxiety. The nurse bumped it up to 30mg from 20 but I’m afraid to take advice on these type of meds from a nurse. I’m just a mess. Not looking forward to next Tuesday.
thank you for allowing me to vent

Oct 9, 2021 07:26PM AnnieG11 wrote:

Had my second course last Tuesday. Felt great for the following few days. Today, Saturday, I can't even get out of bed I'm so weak. Has anyone experienced this? thank you

annie

Oct 14, 2021 09:01AM oddboood wrote:

Thanks, Kendara! Sorry you are having a rough go right from the start. But yes, even with the crappy days, it does feel good to know we are kicking cancer's butt!

And welcome AnnieG, DeltaMoon, mammacure! It is so great to have this forum to share experiences. Especially since this treatment is so new for bc patients, I think we really can gather some important collective wisdom here. In that vein, here's an update from me:

So after a ridiculously easy first four weeks, it got real fast. Treatment five hit me hard - like all the pent up side effects suddenly decided to burst forth in a great big blaze of glory: hair falling out in big clumps, fatigue, painful mouth sores, and, as an extra bonus, the evening after the treatment I developed a rash that covered my face and body with itchy bumps, and a fever that spiked at 101.8 with a sore throat and a weird cough. Yowza.

I ended up in my hospital's acute care clinic the day after the fifth treatment - they weren't sure what was going on, but the fever went way down by late afternoon and tests showed no COVID or sign of other infection, so they let me go home. By the end of the following day I was fever free, and the rash had started to fade. The rest of that week was okay - just minor fatigue, nasty mouth sores, and ongoing hair loss (that hit me hardest - knew it was coming, but still - it just made me sad, you know?).

Enter treatment six - yesterday. A few hours after I got home, the rash came back along with a fever of 102.8 and a cough (this AFTER taking ibuprofen and naproxen). Called my MO and he said take Tylenol, some more Demexthesone, and Benadryl in addition to the ibuprofen, and go to the ER if I had trouble breathing. He seems to think the rash and fever are a Carboplatin reaction; it turns out that somewhere around treatments 6 - 8, many folks run into hypersensitivity reactions to this drug. My reaction is apparantly considered "mild;" they only get really excited if you show signs of full anaphylactic shock. Still, MO says he may cut out the Carboplatin completely. We have an appointment before my next infusion and will talk through it then. I'm feeling much better this morning - fever is gone, but the rash has me looking like a ripe tomato.

Reading up on the Carbo toxicity issue, I learned that some doctors will do a skin test on you before treatment 6 -7 so they know ahead of time if you will have an hypersensitivity reaction. Then they can lower the dose or decrease the infusion rate to help mitigate the reaction. Might be worth mentioning to you MO as you enter week 5 -6.

Sending love and light to all, and sincere thanks for this wonderful supportive community.

XOXO,

Aleta

Oct 18, 2021 06:38AM Delta_Moon wrote:

Week One Recap: Things did not progress in the order I expected them to. From what I've read and heard, I expected nausea first, then the muscle aches and exhaustion. Thinking I had caught a break with the nausea when there was no sign of it after 4 days. Monday and most of Tuesday were pretty normal days. Faded pretty quickly Tuesday evening and the muscle pain (not aches, actual pain) started. Spent most of my time in bed trying to get comfortable, with short spans when I had to get up and move around. Nothing much helped though so I wound up back in bed. None of the expected exhaustion to speak of, beyond just not being able to sleep. The nausea started Friday night (should have known I wouldn't escape it) and most of Saturday. No actual throwing up thankfully, just feeling like I needed to. Along with the nausea came the joint pain. First my shoulders and hips, then moving down to knees and ankles. Even rolling over in the bed was painful at that point. I had a burst of energy Saturday afternoon and got out to run a couple of errands in my "new" car. And because it's me, and I don't understand the concept of moderation, I wound up back in the bed by mid-afternoon. Woke up long enough to eat, then back to bed. Sunday morning the gas pains started. Hard abdominal gas pains. Dealt with that all day and into the evening. Nothing I tried gave me any relief so I'm open to suggestions.

Because this is my first round, I don't know if subsequent rounds will follow the same pattern but at least I have an idea of what to expect. The not knowing part was the worst. Just waking up and wondering "what next?" was making me crazy. At least now I feel a little more prepared. I will be 1/3 of the way through treatment by my birthday, halfway through by Thanksgiving and 2/3 by the New Year. I can do anything for that long if I break it down into manageable segments.

Of course, all of this may be moot by the next chemo round. My daughter is getting married Saturday and even though I don't feel stressed about it, I'm sure I am to some degree. How that is affecting me, I have no idea. Guess I'll find out in a couple of weeks.

Oct 24, 2021 07:26PM Kendara wrote:

Aleta-just read this and I am so sorry you are in the hospital (well, you were yesterday). I hope things have improved since you posted and that you're at home now. I hope the doctors figured out what was affecting your liver and that your enzymes went back to normal.

Delta Moon-how was the wedding? I hope all went well and that you felt good enough to enjoy every moment.

Annie-how are you doing? Post an update if you can.

I have my fifth infusion tomorrow. This was the worst week so far for me. My entire digestive tract from my esophagus to my colon hates me right now. My scalp is pretty unhappy too. The Pepcid isn't working for the acid reflux and the Compazine gives me headache and dizziness. I'm scared to take Imodium again because it shuts all GI tract movement down, and then when it wears off I get excruciating abdominal cramps as my intestines try to wake up. And I recognize that these are all considered “mild" side effects compared to the things that can put me in the hospital.

Praying things get better for all of us.

Kendara