Starting TCH - Any advice?

NVS · January 2021

Hello,

I'm starting TCH - Taxotere, Carboplatin and Herceptin - in a couple of weeks and I'm very anxious about how it will affect me. I have three small kids and we'll have help from my mother-in-law, but it's still a lot of work. I've been told by every doctor that the drugs will affect everyone differently, but I'd love to hear your stories of how they affected you. The doctors have also told me that the more I workout, the better I'll feel, but I also just had a double mastectomy 3 weeks ago, so I'm fairly limited in what I can do right now. I hope to ramp that up once I've been cleared.

SpecialK · January 2021

NVS - welcome, sorry you have to be here though. Here is a link to an older thread with a lot of good info on the TCH regimen. I did TCH and came through the other side, there are some fairly common side effects but your oncology team should be able to mitigate most, if not all, issues. Be sure to discuss how you are feeling with your MO, don't try to power through - they have ways of helping you feel better. I will also include a link to some side effect sheets that I found to be invaluable. There may also be some phone apps that do the same thing if you prefer those. I had a set of these worksheets for each infusion to track how things were going, as often the things that bothered me on one infusion did not on the next - sometimes new issues crop up. I brought them to my appointment with my oncologist that was before each infusion to discuss what to do. I found the first infusion to be difficult - I was also coming off several surgeries, but also found that the loading doses given at the first infusion were a bit tough. The following infusions were actually easier until further toward the end, and the biggest problem I had was fatigue. It is not uncommon for some of your blood values to gradually decline over the course of treatment, which can lead to cumulative fatigue, but this doesn't happen to everyone. You may want to consider cold capping if it is available to you - there are a small number of people who end up with permanent hair loss from Taxotere - it is uncommon, but does happen. I took some supplements to avoid neuropathy (L-Glutamine, Acetyl L-Carnitine, and Vitamin B6) but if you are inclined to try these speak to your oncologist first to get clearance. I also iced my hands and feet during the Taxotere infusion (usually about 60 mins) to try to avoid nail loss, another potential side effect. If you have any specific questions, please ask. Also, if you put TCH, or Taxotere Carboplatin Herceptin, in the search function you will find additional references on this site.

https://community.breastcancer.org/forum/69/topics/578284?page=1

https://www.cancer.org/content/dam/cancer-org/cancer-control/en/worksheets/chemotherapy-side-effects-worksheet.pdf

MsMurphy · January 2021

Hi NVS,

I just had my second infusion of TCH Friday. I get it every 3 weeks for 6 cycles and continue with Herceptin for a year. For me, the biggest side effect is just straight up exhaustion. I know they say exercise helps but I don't have even that much energy. My hair started heavily falling out on day 14. I shaved it short but it was falling out so quickly and clumpy that I took the razor to it yesterday to get rid of it. I also experience a complete lack of appetite the first week. Fortunately no nausea or neuropathy though but be prepared for constipation and/or diarrhea. I seem to fluctuate between them but now that I know what to expect, can better adjust what I take to control it. The good news is towards the end of week 2 of the last round, I was feeling much better. Fingers crossed it goes that way again. Hope all goes well for you.

Special K, thanks for sharing those links. Definitely looking those over.

AbbyRhodes3 · January 2021

Hi, there - I'm scheduled for TCH six of six this coming Friday. I'm really excited to have it over with!

Many people sail through TCH with few side effects. I have had a lot of trouble with diarrhea, and two bouts of constipation. I've lost 17 pounds since 10/1 - and it's not water weight, it has stayed off. I hope it's not muscle weight, but expect some of it is.

I didn't have the energy for exercise until my 'good' days of round four. I have been walking much more on my good days, and have started doing some core and lower body workouts to rebuild stamina and leg strength.

Aside from the lower GI issues, other things I've experienced are:
- some nausea, but very controllable with compazine and zofran. Have not thrown up at all
- dehydration. Needed fluids infused a couple of rounds - it really helped me feel better, but takes up more time. Mixed bag.
- dizziness/low BP for a few days after each infusion, caused by steroids they give with it. Dizziness on sitting up and getting up.
- very bad heartburn - needed 2x prilosec daily some weeks
- bad taste/smell on days 4-11. Food tastes like sour cardboard, water tastes foul - but adding a pinch of salt and/or juice helped.
- extreme tiredness. And my electrolytes got low this last round- woke up feeling beat every day. Magnesium infusion solved that!
- kind of an odd feeling in the head for a few days after chemo - I guess that's what they call the brain fog. Gone by day four.

Those are the low lights. All of it is manageable. I found keeping a journal and jotting down how each day of the first few cycles went helped me remember and prepare for the next round. I learned how to get ahead of the dehydration and nausea. The lower GI- I'm just lucky it seems to have lightened up on its own for round five. I hope it does the same for this final round.

NVS · January 2021

Thanks, SpecialK. This is super helpful. I will be cold capping -- my oncologist also told me about the potential for permanent hair loss with Taxotere. I'm going to ask about the meds for neuropathy and will also look at the icing for nails!

NVS · January 2021

MsMurphy -- That's great to hear. I hope you continue to have the limited side effects that you've been having. I've read about the constipation and diarrhea, so I'm stocking up on OTC meds for both.

SpecialK · January 2021

NVS - I used bags of frozen peas that I brought in a cooler, but some centers have ice for you. Some have also used ice gloves/booties, which I think you can order from Amazon. I was the only one icing in my center when I did it, and you may find that some nurses and/or MOs will pooh-pooh the hand/finger icing - but they are not the ones who have to deal with nail loss, right? I had no Mees lines, no ridges, no discolored nails afterward, and those are fairly common occurrences, along with loss. Drink a lot - helps flush the meds out, and also stave off dehydration if you happen to have the Big D. I was never constipated, but I tend not to be, even after surgery with pain meds. I did have the Big D for at least a week after each infusion, but it was not severe enough to make me medicate - I just didn't venture far or wear white jeans until ten days out, lol! I also ate more red meat and protein than usual to try to keep my red cell count up along with my hemoglobin. Both may be affected by chemo drugs and keeping both as high as possible helps with fatigue. There are many sources of protein, doesn't have to be meat - eggs, quinoa, Greek yogurt, nut butters, fortified cereal, etc.

MinusTwo · January 2021

Here's another useful link. Be careful of dehydration. I actually had to go in between each infusion for a bag of saline. If you aren't getting protein, try the powder that MD Anderson recommends - BeneProtein by Nestles. It is tasteless and dissolves in anything from instant breakfast to applesauce to oatmeal.

https://community.breastcancer.org/forum/69/topics...

WC3 · January 2021

I detailed my side effects in the post linked to here on the 9th post down.

I think mine were more severe than most seem to experience but no complaints as I had neoadjuvant chemotherapy and a complete pathalogic response.

I was going on walks around the neighborhood during parts of my cycle until infusion 3 when my platelets began dropping too low but generally could not exercise and spent most of my time at home either in bed or sitting in the living room. I was pretty fatigued. I slept a lot and my mind was fuzzy.

Some of the degree of my side effects may have had to do with the fact that I had difficulty eating and I also have other health issues. I lost 30lbs and was not overweight to begin with but weight loss is unusual with this type of chemotherapy and many people gain weight on it.

My advice would be, rest when you need to. Stay ahead of the acid reflux and nausea by keeping a good management schedule.

Cowgirl13 · January 2021

NVS, I also had TCH. The biggest thing that I can suggest is to drink at least 8 cups of water a day. A lot of times I drank even more and I did that thru the end of Herceptin. I wish I had walked a bit.

Ista · January 2021

I start TCH in 3 days and theses are very helpful tips thanks everyone. My treatment center doesn’t do cold capping but does the hand & feet thing. I was told to bring a lunch. I’m not sure about ice popsicles but I read some where to bring frozen grapes to eat. Also bring a blanket or sweater or poncho depending on port, picc or IV.

Starting TCH - Any advice?

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