Starting TCHP on Friday, what to expect

Sarah_78

Hi everyone,

my initial diagnosis stage is about to come to an end.

It didn't go as well as I expected since I wasn't able to find an expert for second opinion, both Heidelberg and Tübingen (2 renowned university hospitals in Germany) told me first possible appointment would be beginning of October. One of the doctors in Heidelberg agreed that weekly Taxol would be better for me in terms of side effects but my onc (who is the head of the department) told me he prefers Taxotere better due to neuropathy. He kind of convinced me with that so I am going for TCHP now.

I will go on Thursday for heart check (echocardiogram) and 6 cycles start on Friday.

What to expect? How long usually does the infusion take?

They will place their cooling machines to my feet and hands, I didn't buy a cold cap with the fear that it might have side effects like headache. Should i?

Any input about when NADIR will be reached is also appreciated so I can plan my life around my low counts.

Thank you for any help as always,

Sarah

Melbo

I did TCHP last summer — it was awful, but not as bad as I imagined it would be. I highly recommend reading through a chemo forum here — the July 2020 forum had several of us on TCHP and a few of us were young(ish).

Drink a lot of water, even when it tastes awful. I drank a lot of pedialyte mixed with water because the P tends to cause diarrhea and plain water tasted awful. My diarrhea was controlled with Imodium, but there were a couple of people who had to stop taking the Perjeta because they couldn’t control the diarrhea.

Rinse your mouth with salt water/baking soda mix after eating or drinking. I got mouth sores after the first round and they were one of the worst things I experienced. Once I started rinsing regularly I didn’t get anymore. Putting those boxes away after I was done was one of my happiest days.

Exercise as much as you feel up to — but don’t beat yourself up if you can’t maintain it. I had weirdly sensitive, peeling feet during the third round that stopped my morning walks. Just do what you can when you can, and accept that the time you’re on chemo will be mostly survival mode.

Hopefully your treatment center has a nurse line or care center — call them about weird things. That’s what they are there for and most times there is some sort of solution to whatever you are experiencing. Mine mostly fell in the annoying range, but there can be life threatening issues that pop up. If it’s unusual, uncomfortable for an extended amount of time, or just annoying — call.

The next few months will suck. But you’ll get through them and it gets better.

Sarah_78

Thanks for the information Melbo, very useful tips. I added July 2020 thread to favorites and I am reading it slowly.

I will ask if they have a hotline about side effects.

Melbo

I wrote my initial answer first thing this morning and didn’t answer all of your questions. Here’s a bit more info.

the first infusion will take 5-6 hours — they give you several pre-meds and then take extra time with each infusion to make sure you don’t have any side effects. Later Infusions will be faster, as long as you didn’t get side effects the first time.

I didn’t cold cap, so I don’t have any input on that. I also didn’t ice my hands and feet. I got mild tingling in my hands and feet, but it didn’t affect function at all. I still have some tingling in my hands every now and again, but very mild.

The first few days after an infusion tend to be okay because they will likely give you steroids. Most of us seemed to feel worst days 3-7 and then felt gradually felt better until the next cycle. They warn you that each cycle gets worse, but I think for me the first cycle was the worst and the later ones weren’t as bad — maybe I just got used to it, but I definitely wasn’t sleeping quite as much for the later cycles.

Feel free to PM me or ask here if you have other questions.

AnnieG11

Hi Melbo

I'm trying to make a decision regarding the cold cap. It seems like a lot of trouble. I have thin, fine hair as it is and it just doesn't seem worth it to me. I just found this site. On the Facebook page of one of the cold cap companies everyone seemed to love it and I am questioning my reluctance now. I am trying to fin the pros and cons. I start treatment next week. Can you help?

Thank you

Anni

AlwaysMeC

Annie, I finished TCHP six weeks ago, and cold capped with Paxman. I found it tolerable, but inconvenient. I hated the tube that was connected to the cap because it was too cold to where I couldn't lay back and rest my head, and the cool down 90 minutes after was frustrating because I knew infusions were finished and I just wanted to go home. With that said, I decided to continue because taxotere has a 6 percent risk for losing some or all hair permanently. One of the women in my support group was a 15 year survivor and she lost hair permanently, enough to have to choose being bald over attempting to have any length.

I lost probably 80 percent of my hair, mostly on the crown. I wasn't aware that the cap needed to be snugly on the top until after the second session, so it's partly my fault. Otherwise, even with the hair loss, if the top was like the side, I might have been able to look decent. I ended up shaving it to a buzz cut after the last session, so as not to look like a 90 year old gentleman from behind! I did notice that hair was growing back a little after the fourth TCHP session.

AnnieG11

Thank you! It did give me a scare hearing about permanent hair loss. I didn’t know that. My husband is insisting on the cold cap because he said I would feel better about myself but I just don’t want to go through all that. And after sitting in that chair for four hours, I don’t want to add even another hour. I’m going to want to get out of there and go home! But I’m so wishy washy.

I am new here and I don’t know how to post a separate message

MinusTwo

This is not specifically TCHP related, but I did have TCHP and this was a great source. I know it's long, but lots of good information.

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

I did not cold cap: a) I had no one to help and, b) it was not particularly a "thing" at the time. I iced my hands & feet with frozen peas. Don't let them rush your infusions. For example - lots of people have trouble with Herceptin if it's pushed any faster than 60 minutes. Request a full 60 minutes for each drug even it disrupts your entire day. And do watch hydration. I got an extra bag of saline each time. My echos were always good, but I did have some persistent "Big D" and lost 60 lbs.

Melbo

I did not cold cap so I can’t help much with that topic. I also had thin, fine hair and have never been particularly vain about it and I had no knotetest in paying for it. I decided that chemo would suck enough without adding an extra layer of discomfort and trouble to infusion day. I also never bothered with a wig or head coverings when I was in public, and it mostly didn’t bother me.

But this was very much a decision I was pretty comfortable with from the beginning. I considered wigs and scarves — but after looking at the options and reading all the considerations I realized I just didn’t care that much and I was comfortable with the statistics saying my hair would most likely grow back.

Everyone has to make their own decision though! Only do it if you think you will be really bothered by being bald. I ended up not minding that much! Almost no one commented on it and I got far fewer looks in public than I thought I would.

WC3

AnnieG11:

I cold capped using Dignicaps. My motivation for it was to reduce my chances of permanent hair loss. I have thin, fine hair and ended up losing most of it anyway but was never completely bald. The hair along my hair line remained, which, from the front, gave the illusion of having more hair than I did and brought me some normalcy. But I will say that cold capping was definately the more miserable part of the infusion and if I needed to have chemotherapy with a taxane again and was concerned about permanent hairloss I would forgo the cold capping and try taxol instead of taxoter so I can be comfortable during the infusion and sleep.

WC3

Just a tip about water. If regular water tastes horrible to you, try lime flavored sparkling water.

Sarah_78

I am getting complimentary treatment (to TCHP) from nature medication department which is also situated in the hospital. They only do things if they know 1)it won't interfere the chemo/targeted therapy 2)its positive effects are proven by studies.

I'd like to share here a few tips because these are things you can find over the counter

1) They gave me 2 wrists bands, which can also be used to prevent sea sickness by stimulating the acupressure point inner wrists, the one I have is called "Sea Band", amazon have it, about 20 bucks.

2) An aromatherapy citrus stick, which is inside something that looks like a lip balm. I couldn't find this one online, if someone finds, maybe write the brand (mine has no brand in it). Yesterday when they finished targeted therapy and started with chemo, my mouth taste changed immediately to something medical and, well you know, icky. When I sniffed on that stick, it was gone for a while, now I am doing that from time to time, it works on me :-)

3) They put some essential oil wrapped with warm pads over my liver. It was warm and comfortable but going to toilet or to water dispenser wasn't easy of course, given I was also cooling hands and feet. Melbo wouldn't have liked it ;-) But yes, I let them do it, this one is hard to know if it works, I am usually non drinker (beside my teenage years and Hodgkin's treatment 10 years ago) and my liver is hopefully kept in a good shape until now.

So 24 hours after chemo, no nausea, liquids taste meh, no diarrhea but I started believing I might be in small constipation group perhaps. I remember when I was getting chemo 10 years ago, that was one of the problems during first days.

When does diarrhea usually start?

Sarah_78

WC3:

I asked my onc to change my therapy with weekly Taxol instead of 3 weekly Taxotere.

He convinced me otherwise because if you look at the latest study with 4950 women involved (Weekly Paclitaxel in the Adjuvant Treatment of Breast Cancer published in The New England Journal of Medicine, Sparano et al.), there is a table at the back of it. There you see neuropathy side effects (which is one of the major/life changing and sometimes permanent side effects) are double on Taxol when compared with Taxotere.

Of course permanent hair loss is such a sad side effect but he told me he had a patient who couldn't even go to work because of high grade neuropathy and we know those can be painful.

High grade is still low percentage also for Taxol, but the middle 2 columns suggest, twice likely for weekly taxol vs. 3 weekly taxotere.

Just wanted to drop this here for those on TCHP who think they are given the wrong regime.

Melbo

ha! I would not have liked icing my hands and feet. my MO told me it didn’t work and my infusion center didn’t proactively offer it, although I’m sure they would have been happy to help if I had asked.

However, a year out from chemo I still occasionally have tingling in my hands - especially my dominate left hand — and they they sometimes feel like they are almost asleep. It’s very mild and does not affect function at all, but I do notice it and worry that itcould get worse. (I have not worried enough to actually research to see if that’s even a thing — but I do think about it occasionally.)

If I had to do another chemo down the road I would probably ice my hands and feet just in case it did help.

WC3

Sarah_78:

Thank you for posting the data on neuropathy. There are definately pros and cons to both taxol and taxotere and they all warrent consideration.

WC3

AnnieG11:

I forgot to add, my hair did grow back.