Help! Anyone on TCHP for early stage neoadjunct
 

Hi Everyone!

I'm ready to get my port in on Wed. and start TCHP on Thursday. I am in a clinical trial and was randomized for the TCHP treatment every 21 days for 6 cycles. I am HER2 positive 75% Estrogen positive, 2.6 cm tumor, Invasive ductal carcinoma, diagnosed at 55yr. on Marcy 12th.

Please share your experience if you have had this treatment. I don't know of anyone who has had adjunct prior to surgery.

Q. What meds were you given before & during?

Q. Side effects?

Q. How to manage side effects?

Q. WILL I FEEL WORSE OVER TIME, AFTER EACH ROUND?

Q. Were you able to work during TCHP treatment?

Q. Did you get mouth sores? Were you able to eat?

Q. What should I eat?

Q. Steroids? Prior to chemo and during?

I have no one to talk to about my treatment. I hope there is someone out there who is or was on TCHP.

Thank you!
Teal

Re: Help! Anyone on TCHP for early stage neoadjunct
 

Hi Teal,

I am on TCHP, diagnosed on March 19th, Her2+/ER+/PR+, getting my chemo every 21 days as well. Just had my second round last Thursday. I'll do my best to answer your questions:

Q. What meds were you given before & during?
I was given decadron (steroid) to take the day before/of/after and they gave me additional steroids in the infusion the first time. Additionally, they gave me benadryl, pepcid, emend, and aloxi (for reaction and anti-nausea). They also told me to take Claritan the day of (and for 5 days after) because I received a neulasta shot the day after infusion (to help with white blood cells). I was given zofran and phenegran to take home for nausea (used the zofran, have not yet used the phenegran). They also gave me some povident (extra fluoride by rx) for my teeth.

Q. Side effects?
The anti-nausea drugs appeared to work well, so most of my side-effects have been fatigue and brain fog, dry tongue/mouth, diarrhea (for which I took Imodium) and, for me, a bonus "extra" period, which was quite heavy and I ended up anemic (I'm still pre-menopausal... for now).

Q. How to manage side effects?
The zofran helped with any nausea I had the couple days after, didn't need it by Saturday night (my infusions are on Thursdays, too). The dry tongue - I had a real struggle with this the first round. My tongue was so overly sensitive, I made it worse by eating things that aggravated it the first few days - try to stay with mild things. Did that this time and it's going much better. For the dry mouth, a baking soda/salt rinse helped as well as a Biotene mouth spray (lubricant), which helped for when I was talking (which would make my mouth drier). Brain fog - haven't found anything that helps with that except time. The Imodium helped me get the diarrhea under control.

Q. WILL I FEEL WORSE OVER TIME, AFTER EACH ROUND?
I'm wondering the same thing, so I can't really help with that part yet. I've only had 2 and this one was a little rougher on me, but I think a lot of that has to do with the anemia - I am feeling very weak this time. Hoping to get that under control and maybe next time will be better?

Q. Were you able to work during TCHP treatment?
I have been going to work, but I had to take today off and I will work from home tomorrow (thankfully, I have that option, or I would have to take another day). Last time, I went back to work on Monday, but in retrospect, I should have taken that day off - would have made the rest of week much better.

Q. Did you get mouth sores? Were you able to eat?
I've been able to eat and other than aggravating my tongue, I have not had any mouth sores. The salt/soda water helped a great deal, I think. The first week after, the eating was difficult (bad taste in my mouth, things aggravating my tongue, etc), but after that, things were better.

Q. What should I eat?
Not sure what to advise on that - other than as many good-for-you things as possible - fruits, veggies, grains, etc. I started small with yogurt (and took a probiotic as this stuff will do a number on your gut), but I'm also fasting around my infusions, so my eating schedule might be a little different. I found applesauce, broth and yogurt with blueberries very easy to eat -along with other fresh fruits and cooked veggies. I'm adding in protein powder (suggested by the dietitian) as well.

Q. Steroids? Prior to chemo and during?
I was given steroids to take prior to and during. I think they helped.


I'm using "Chemo Cold Caps" in an effort (vain) to keep my hair. On their website, the woman who runs it has some tips (she did TCH): http://www.chemocoldcaps.com/lizzy-s-tips.html hopefully, you'll find some good tips there (that's where I got the salt/soda idea).

Hope that helps.

Re: Help! Anyone on TCHP for early stage neoadjunct
 

Hello PeaceMomma

THANK YOU SO MUCH FOR TAKING TIME TO RESPOND TO MY QUESTIONS!
HUGS AND APPRECIATION!

My oncologist called this morning and gave me the drug lists:
1. Zofran- nausea
2. Decadron-steroids (starting day before chemo am & pm)
3. Neulasta- after chemo

Tomorrow 7:30am I will be going into the hospital to have my port "installed."
It will be "twilight" so I will be half awake?

Thank you for all your support and information. Without this site, I would be lost for
any kind of real support. I realized that it feels better talking to veterans who have gone through or concurrently going through the experience. Otherwise you get an empty feeling inside talking to friends and family who really know nothing about the journey.

Thanks again!

Re: Help! Anyone on TCHP for early stage neoadjunct
 

Teal55,

My Dx was very similar to yours. Your questions have been answered, but let me throw a few more tidbits your way.
Buy a plastic ketchup/mustard bottle - keep water in it for when you go to the bathroom. Use the bottles to ' rinse' and then pat dry. The toxins from the chemo come out in your urine and poop and can make you 'raw' if not careful.

The nuelasta shot can cause great pain in some people. At the first inkling of joint pain take the pain meds. Going forward, take it proactively if you are one of the people that get the bad pain - it can get really bad.

I ended up getting a lumpectomy because I was so worn out from the chemo. I didn't think my body could handle a major surgery. I am still giving a bilateral some thought, but I am still stuck on oxygen and having stomach issues now (probably because I wasn't taking the Zantac like I should have).

Buy a soft toothbrush for during the period of when your mouth is tender. The sprays and mouth rinses are great and do help a lot.

Make sure you take the Claritin as well as take Zantac or Pepcid as you will have GERD type side effects as well.

My memory is crappy. I am on the tamoxifen and not sure if it is that or the herceptin or both. I forgot my SS# the other day. I have forgotten my wallet 4x in the past month. I write notes for myself, but forget where I put the list. If I am talking to someone and get interrupted, most of the time my train of thought gets lost. My IQ was 129 - it now feels like 89. I hate it. But I am alive and was told all cancer cells died with the treatment.

The main thing is to keep AHEAD of the side effects. I know it is like overkill, but in the long run you will have less issues. Oh, and drink lots, and lots, and lots of water. I bought the water that was the expensive stuff at Whole Foods ( Sprouts or whatever organic health food store you have available). I can't remember the name of the water, but the ph level was 8-9 and the water tasted really good while I was going through chemo. It allowed me to stay hydrated. Regular water tasted yucky, but had someone on this site tell me about the higher ph water tasting better.

Good luck with your treatments! My prayers are always with the 'her2support' ladies.

Keep us posted and ask anything anytime!

LaDonna

Re: Help! Anyone on TCHP for early stage neoadjunct
 

Dear Teal55,

You have already been given great info. I will add that as far as meds go, take them. I have always been one to shy away from taking anything, but learned that staying ahead of your side effects makes life during chemo much easier. Call your oncology nurse with any concerns you have, they have good advice to *share and will also keep a record of effects you are experiencing.

I had many of the side effects already mentioned. Water tasted terrible to me so I improvised with lemon wedges, cucumber water, even kook-aid. It is soooooo important to stay hydrated. Please drink, drink, drink.

Working through chemo is doable and a good distraction. *I continued to work , but was glad the school year ended before rounds five and six. Monday was my chemo day and the most difficult times were days 4-6. The rounds did get tougher for me as time went on but Perjeta gave me a lot of trouble, it doesn't for everyone, so I hope you fall in the latter category. *One tip, keep a change of clothes in your car just in case. Diarrhea can come on quickly and as my aunt told me, "never trust a fart." *: ).*

I am glad you and Peacemomma are on a similar time frame and can share experiences with one another. Many on this site will help you through as they did me. *TCPH is an effective protocol. At the time of my surgery my 7cm tumor was gone. Chemo is tough because it is tough on the cancer.*

Wishing you the best possible outcome,
Cindy

Re: Help! Anyone on TCHP for early stage neoadjunct
 

About the neulasta - the nurse who gave me my first shot told me about the potential for the ribs and sternum to hurt a lot and that a lady had gone to the ER the day after hers because she thought she was having a heart attack. I'm glad she told me that story because I would have been waking my husband up to run me to the ER that next morning. I had SHARP pains in my chest that next morning, along with tightness - I would have definitely thought my heart was giving out.

Oh, I bought some sensitive skin feminine wipes to keep with me for the same reason as the water suggestion above from LaDonna (will have to get some bottles - great advice... wish I'd thought of that before). I used these wipes when at work - a bum saver for sure.

Wishing it all goes smoothly for you tomorrow.

Re: Help! Anyone on TCHP for early stage neoadjunct
 

PeaceMomma,

Wish I could take credit for the bottle idea, but got the suggestion for someone on here back in July of last year before I started my treatments! There should be a permanent thread made somehow on here for "tips on getting through your treatment" for all the new people who have pretty much the similar questions we all had!
LaDonna