Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!
 

I am not trying to be vain, I am trying to prepare my (already completely emotionally devastated) 14-year old daughter. I expected to warn her about the hair but the nails, too??? If you did, or didn't, or wonder, too, please reply. I received great suggestions and information about taking this protocol and appreciate all replies. I am still waiting for my 2nd opinion with another oncologist to be sure this is the right course and most up-to-date with the leaps and bounds research has offered to BC treatment.

Thanks everyone! Ladies and gents!

Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!
 

I did TCH. I lost my hair. My nails got severe damage - funny brown lines, ridges and very weak but they all held on. My last chemo was September 2014 and my nails are still weak but look ok. Also, my hair didn't start to grow back until I completed the year long Herceptin. The MO or nurses didn't mention that. My hair came back virtually the same as it was before chemo - just a little thinner still. Drink as much as you can while doing chemo. Try to find whatever tastes good. Green tea worked great for me.

Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!
 

I lost all my toenails a few at a time, but my fingernails were ok. I took alot of epsom salts baths, and none of my nails ever got infected or hurt. My hair didn't start to fall out until after the second round of TCH; I had it cut to chin length and then pulled it out a bit at a time. I never shaved it off, but yes it all fell out.

My onc nurse told me to drink 3 liters a day ... hydration is VERY important. I drank alot of stevia sweetened ginger ale to help with the godawful indigestion I had from the Taxotere. Also barley soup to help with the constipation I had from the steroids, I posted it here somewhere so if you put barley soup in the search engine here it should come up.

I had a wig but only wore it once; I wore a turban when I went out and was bald around the house the rest of the time.

If you are Stage 2 you should qualify to have Perjeta added to your chemo ... definitely ask your oncologist about this! It is a newer drug that is getting good results when given with Herceptin.

Carol Ann

Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!
 

Best advice I was given for nails was - paint finger and toe nails with a dark nail varnish (not a gel or acrylic). Do this all the time when on chemo. I continued after chemo. A few nails were lost and some marked but majority ok. I think water based varnish and acetone free remover best. Has to be dark colour. My daughter liked to paint them for me!
I wore a scarf at first when hair started to change condition and then it just brushed out. I wore my wig for about 9 months until hair about 1/2-1" long. As I replaced the wigs I went shorter and shorter until I eventually plucked up the courage to go out without wig on! It did start to grow again before my last chemo! It grew back very thick and curly!!
I found nausea a bit of a problem - worse if I didn't eat. So had to eat little and often. Also carried mints with me all the time.
I am on Perjeta - worth asking about.
I was surprised how well I felt when on chemo!
Juls

Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!
 

I wore Penguin Cold Caps (basically super-chilled ice pack bonnets) and I had some loss and shedding that continued for a couple months after my last dose of chemo but I alway had hair. It was worst around the edges of my scalp but I think getting extra strips they call brow bands would help with that.

I put my feet, in socks, into ziplock bags and then into a basin of ice each infusion. I had no issues with toenail damage or neuropathy. I would hold a metal water bottle filled with ice and water as well, but probably not as much as I should have. Again, no nail or nerve issues.

I was also taking a lot of Chinese herbs and targeted nutritional support during and after treatment that might have helped.

Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!
 

Lost hair 2 weeks after the first chemo. Nails were fine until after chemo and they were all this yucky yellow/brown color and very week. Did not get manicures on purpose but should have. 3 years later, nails are still very weak and full of ridges. I've tried everything...

My hair grew back EXACTLY as it was before chemo. Curly/wavy and very thick. it did grow faster after I was finished with Herceptin

Janis

Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!
 

I also did TCH. I had enough hair for two people -big ole southern hair. Starting losing hair on Day 14, just as the nurses predicted. Turned out to not be that big of a deal. I figured at that point, there was nothing else cancer could not to be. So it seemed to be uphill at that point. I also had a great wig -worn it once and it is somewhere in a closet. I worn the caps with decorative bows or hats. Remember to ask about the prejeta. It is a game changer now in chemo. Stay strong.

Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!
 

I lost my hair at the start of the 4th week of chemo. It started growing back about 2 months after chemo ended. Mine was slow growing forever but I had enough to take off my caps 6 months after the end of chemo. It is thinner but there.

Lots of people appeared to dislike their wigs. I tried baseball caps and couldn't stand the brim hanging over so went with toboggan caps. As cold as I was all of last winter I was thankful to be wearing them. Accept temporary baldness as a reality and decide how you want to address it in advance.

I only lost 2 toe nails and that was because I stumped my 2 big toes while on blood thinner. It takes a year to have toe nails grow back and I am not sure mine will be by the end of my year. My fingernails are tightly attached but strange colors of pink and white with vertical lines. They shred constantly but they are there. Most people don't notice them being anything but very short.

It will help with neuropathy if you ice your hands and feet during chemo. I found bags of frozen veggies worked well. Some people use ice caps to prevent hair loss but some oncologists don't like them.

Good luck.

Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!
 

I lost my hair two weeks into TCH, lost my finger nails but not my toe nails. I chose to shave my head when the hair started falling out it was easier to manage and less messy. I have heard people using cold packs on their hands to save their nails, I didn't hear about it until mine fell off so I couldn't tell you if it works or not.

I wasn't a wig wearer, I preferred scarfs at work and hats when out and about, around the house I wore nothing. My kids went with me to shave my head and loved to rub my head when it was bald. They get used to seeing you like this and they know it is only temporary. For me it was like a badge of honor, I was kicking cancer's ass and bald is beautiful.

Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!
 

I know that hair loss is the most prominent side effect of breast cancer chemotherapy but I don't believe that embracing this unintended side effect helps anyone. It is what it is, or, if you can afford it (since at present it isn't available to everyone) you can use cold caps.

The reason that breast cancer chemotherapy drugs cause hair loss is because they are targeting skin cells -- our breasts, while glandular tissue, also are predominantly evolved from our epidermis. Our hair also emerges from our skin, and so the two are connected. Effective chemotherapy drugs for treating the one unfortunately equally affect the other, especially since our hair cells are continually dividing (chemotherapy drugs are cell phase specific, going after rapidly dividing cell predominantly).

It isn't often discussed but it is known by the pharmaceutical companies, and doctors as well, that 3% (or more) of patients receiving breast cancer chemo will experience permanent alopecia -- that means that you hair doesn't grow back after chemo. Suddenly a temporary badge of honor, unintended as it may be, becomes a small chance of permanent disfigurement. (see http://aheadofourtime.org/)

I heard from a MO and researcher that I should use cold caps because she was noticing this from young TCHP patients that she was treating and that sealed it for me. Using cold caps costs around $2500 out of pocket, including ice chests and dry ice if your facility doesn't own a proper freezer. I had two friends, but you could do it with one, who helped me out on the day of treatment with cap changes every 30 minutes. It was a hassle and as my hair loss increased during treatment the caps became colder but no one knew I was going through cancer treatment which made it a profoundly different experience for me -- both good and challenging.

The additional benefit of wearing cold caps is that it protects your follicles from chemo when the cells are done with the resting phase and starting to grow again. I had a good quarter inch of new hair growth around my final chemo dose which put me about akin to my chemo group sisters who stopped chemo (with no ongoing Herceptin) about 6 weeks before me.

Hair regrowth is weird during Herceptin for sure, in my group we noticed that the regrowth felt more fur like. It also slows things down -- kinda makes sense since again, we are treating the skin. Since stopping Herceptin the texture is much better. My hair is thick and full and a little uneven still. My stylist and I are slowly growing the new stuff through the old to get it eventually to a smart bob.

Here's a great discussion thread to learn more about the experiences of cold cap users:
https://community.breastcancer.org/f.../735873?page=1

Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!
 

Carol Ann, did you receive Perjeta? I was told today that I didn't really qualify for it because I had surgery first and, as of now, I'm not metastatic. Just wondering if that is the case for real. Thank you!

Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!
 

No I did not, but it was because I was Stage 1; when I was diagnosed 2 years ago it was for Stage 2 and higher, so I didn't qualify. I have seen other people here, Stage 2 early stagers ... receive Perjeta, and they are not metastatic.

I would definitely ask for a second opinion on this!

Carol Ann

Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!
 

http://www.perjeta.com/?cid=per_PS_M...m_term=PERJETA

Here is more info. :) It does refer to presurgical use; so that may be what your doc is referring to.

Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!
 

With my first Dx, I never lost nails, I did keep them painted dark but they did become quite brittle and it took over a year for them to become strong enough to use as tools without fear of shredding them. My hair started shedding around day 16 after TCH and was growing back as soon as I stopped Taxaotere and by one year it out, it was shoulder length, thick and curly (as it had been before). Yeah, just about the time I returned to normal, I was restaged. The pits!

I started shedding out on day 14 this time. I have not been diligent about painting my nails this time. I'm taking my chances. I'm on THP this time but I am stage IV now so that should have no relevance to your treatment plan. Perjeta was still in trials when I was first treated.

Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!
 

Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!
 

Hair went right on schedule, but I had my head buzzed, so it was not a big deal.
Nails were basically fine. I do not polish or use false ones, so just kept them shorter as there were times a think white line appeared and that would be a weakened place due to chemo.

Only lost one little toe nail, which grew back easily. Left great toe nail lifted and had to be cut way down, and has not quite grown in right yet!

All the best with your treatment.