New to treatment and having a rough time

gwcarrick

just completed second round of chemo and having a rough time. In the hospital this wholeweekend for low white count and fever. 1st round was tough to but plugged along a day at a time, a meal at a time, and kept my fighter attitude but this just rough.

NotVeryBrave

I'm so sorry. It is hard. I ended up in the hospital after my first round. Are they giving you Granix or Neupogen?

They decreased my dosages by 25% after that. My MO explained that the recommendations are based on what the majority of people in studies could tolerate. That might be 51% - which leaves a lot of people for whom the doses are too high!

Something that really helped me was keeping a little journal where I wrote down how I felt each day. Then I was able to prepare myself for the next time. Some times I could take something proactively and avoid a problem. It also helped to just know how long a SE lasted the last time.

I'm not a good hospital patient at all. I hope you get out soon and things improve fast. It all sucks.

stephaniebc

i too spent 3 days in the hospital because of severe neutropenia after my third round of AC and it was a very low point in my treatment, so i empathize. what is your treatment protocol?

gwcarrick

Chemo cocktail is TCHP. First round was tough for different reasons but this has been a low point for sure!

gwcarrick

Thanks! I started a sketchbook/journal but think I will start writing down how I feel each day. It’s so hard I may feel well and then things go south real fast.

Hahlyn

Hi gwcarrick

I too was on TCHP it was rough. After my first round I was hospitalized for dehydration. Going forward for the remainder rounds my doctor set me up with hydration twice a week for one week after every treatment. That helped.

If your having issues with dehydration ask for hydration. Don't be afraid to ask for help from your MO they can and will approve it. I was having such a rough time with diarrhea fron the start of treatment in September to January evey single day it was brutal. My MO did what she could and loaded me up with anti diarrhea pills anti nausea you name it i had it, just to help me get through.

So ask don't suffer through it. There were times I didn't think I was going to complete the treatment but I did..my doctor told me TCHP is the toughest regimen. Not many complete it. I was determined.

Hahlyn

MissRosie

Hang in there! I spent 2.5 weeks in the hospital following my first round of chemo, with a combination of chemo side effects and c-diff, plus tumor fever. Needed four blood transfusions over the course of about a month and a half. Didn't complete treatment because it wasn't actually working, which just added injury to insult.

Now on Kadcyla and it's working out better so far, both in terms of how it effects me and how it effects the cancer.

Talk to your doc. There are things they can do, like decreasing dosages or giving you additional meds to help you with side effects. In some cases, they might even be able to switch drugs. We were going to do that with docetaxel on me, but then we realized that it wasn't working on the primary tumor anyway. Thankfully, that's very rare. For most HER2+ cancers, TCHP is brutal, but effective.

I've heard that women who can feel their cancer shrink in response to the chemo can gain courage from that to get them through. I don't know if this is true of you or not, or if it's still too early to tell. I still fear chemo, even though it's much gentler now, but it helps that it got easier to breathe after the very first Kadcyla infusion. (Fast-growing lung mets; 8x6 cm lesion in right lung with babies in both lungs.) If you can see or feel positive change, that might help.

This is so hard even when it goes well, so ask for every bit of support and adjustment you need, to ease the strain on your body as well as your mind. Don't let it be any more brutal than it needs to be.

gwcarrick

Thank you Miss Rosie! After reading your post, I felt my tumor today and had to feel around just to find it, it is definitely smaller! It’s been rough but you are right feeling that tumor shrink is what this is all for

NotVeryBrave

Yay! I couldn't find mine after the first round. It's definite advantage of NAC.

MissRosie

So glad to hear that!

Again, don't be afraid to ask for whatever support you need from your doctors if side effects are getting unbearable or scary. The idea is to maximize the damage to the cancer while minimizing the damage to you, and they need your input to get that right.