Hope everyone is doing alright

I had my first (of three) chemo (cisplatin) treatment on March 23 and started radiation (6wks) that day as well. I slept the whole next day without eating anything then got really nauseous that night and the next day. They ended up giving me a bag of fluids and more zofran on Friday before the weekend which helped me start feeling good enough to eat a little-just some saltines and toast.

This week, even though I'm starting to feel some of the effects of radiation (skin is more sensitive and red, taste buds are going away, fatigue), I'm feeling SOOOO much better and eating normally. I have a PEG but am really trying to not use it until I absolutely have to. My lab work was all normal at the beginning of this week and I've felt better and better each day. But, the MO said that my white blood count could down next week and I woke up today feeling a little crummy, probably from over exerting myself the past few days.

My next chemo treatment is April 13.

SO, my MO said to expect hair loss meanwhile her nurse practitioner said not to. I wasn't all that worried about it either way but as I'm approaching the second round of chemo, I'm curious what others have experienced. I know everyone's journey is unique so it's difficult to give a definitive yes or no but my hair is mid-length and I'd rather not deal with shedding all that-I'd rather cut it short if it's gonna fall out.

So far what I have read is that people tend to lose the hair in the area being treated by radiation and a lot of thinning of hair on your head.

Thanks for your time and input!! This journey sucks but it's a relief to know that I have somewhere I can go for support

Not all chemo treatments cause hair loss. My husband had Cisplatin and didn't lose any hair, but when he was given Taxol and Carboplatin, he lost a bit -- not totally and eventually it grew back after the treatments.

Kris had Cisplatin and had no general hair loss from this.
He did have hair loss from the radiation, where it exits the head.
I hope you are doing okay with all this and have good Family support.
Tammy

Good morning. My husband has experienced hair loss, but no it is mostly fm the radiation treatments, rather than the chemo. The areas of loss are on the back of his head, upper neck hairline and his facial hair. He ended up getting his haircut shorter, and that helped, because now the back is even and doesn't look different at all. He hasn't had to shave his face in over a week, and will likely not have to for another week at least. Still fells baby butt smooth...so strange. Everyone is different, so just take it one day at a time.

Aquaphor for baby's- the thick Vaseline type for diaper rash was recommended to my husband for skin care during radiation. It is super greasy, but helps a LOT!!! Apply twice a day, but NOT before radiation treatments.

Hang in there. My husband has one week left, 5 rads and 1 chemo!!!! We can't hardly wait for the end to be here!!!!!

I've just finished my sixth treatment - 24 more to go. So far, have had mild nausea every other day and my tongue tingles more than usual. Question - how do I maintain the calorie/ nutritional guidelines when I can barely swallow crackers even with compazine? Know this is going to get worse before it gets better. Have a few pounds to spare so the weight loss won't be critical; however, don't want to loss toomuch too soon and have problems further down the road. Am open to suggestions.

Thank You.

Ask for a prescription for magic mouthwash (MM). There are a few variations of the MM. I used benedryl, malox and lidocaine. Its great to temporarily numb your mouth so you can eat if you have mouth sores.

Try drinking your calories with boost or ensure, theres also boost very high calorie you can order thru our Amazon link on this page. It has 530 calories in 8 oz so it gives you more bang for your buck. Your intake must be one of the main things you focus on, it is what will determine how easily you get thru this. Every single day (even when it seems impossible) push to take in a minimum of 2500 calories and 48-64 oz of water. If you can do more like 3000 or 3500 calories it will only help make it even easier for you. The following list and recipe should help make it a little easier.

Hang in there and best wishes!!!

Easy to Eat Food List

(All measurements are estimates)

Giant High Calorie Choc-Peanut Butter Milkshake (1200++ calories per shake)

3 or 4 cups chocolate ice cream (regular/full fat type)
2 tablespoons peanut butter (smooth type)
2 tablespoons chocolate syrup
1 or 2 cups whole milk (can substitute half and half to add even more calories)
1 scoop carnation instant breakfast
1 scoop high protein whey powder (check with doc if this is ok)

Blend this extra long to make it very smooth and creamy so it goes down easier. If the shake is too thick, add more milk to thin it down to what works best for you.


PS... Just remember if you have trouble taking in enough water, ask your doc for a prescription to get extra hydration a few times a week in the chemo lab. This will greatlty help you avoid dehydration.

My hair loss didn't come from the cisplatin, but from the radiation. I still don't have to shave my neck area on the side where the tumors were, and maybe I never will again. *Think* of the savings on razor blades!

I also lost hair on the back of my neck running up to the radiation line. But it all came back in without the gray, which gives me a nice modern two-tone look now. So I got that going for me, which is nice.

Seriously though, my experience was that this snuck up on me and by the time I noticed anything I was worrying about other things (like nutrition -- thanks Christine!). It'll come back; don't worry!

NancyWP65, maybe crackers are not the best things to try now with a sore mouth. Try eating food that is soft and has lots of sauce like poached eggs, soft scrambled eggs, smoothies etc. It is important to stay hydrated as Christine says. You can afford to lose some weight but you can't afford to lose the fluids in your body.

Done with round 2 of chemo. Starting to get really thick mucous-y saliva that makes me gag, I assume from radiation. Anyone know of any relief from this?

Thank you so much!

Trying clearing your mouth with a waterpik on the lowest setting. Use the tongue scraper attachment and put a bit of magic mouthwash in the water in the tank. It helps tremendously. The gunk is indeed from the radiation.