I am 4 days out from PCI and wanted to know if anyone else who has had it had their head actually hurt to the touch. It feels like my head is bruised. Yesterday my hair reallllllllly started falling out
(again ;-( It's white so I've tried blaming in on the golden retriever ;-)
Also can anyone with SCLC that has had 2nd or 3rd line treatment tell me what drug was used?
Thanks
Julie
My wife didn't have that sensation, but it sounds like the hair follicles are inflamed from the radiation. Your hair will fall out I'm afraid, and will take quite a while to recover, especially with more chemo. if you have it. Just watch out for infection in your scalp, like a bad acne, related to dexamethasone if you are taking that also. But by all means, blame the dog for as long as you can get away with it. My wife called it quits and had her head waxed.
Standard 2nd line treatment is topotecan in the US and Europe, but here in Oz we used CAV (cyclophosphamide/Adriamycin/vincristine) which works just as well for ED-SCLC. 3rd line is much the same. Whatever works.
Best wishes,
David
I had a feeling it was hair folicles. I told my sister every last one hurt! When I had radiation on my lung my back got burned pretty severly so I'm using the same cream on my forehead / temple area. I woke up with hair this morning and now I have a very receeding hairline this evening!
OZ lol that's a good one. Thanks for the info on topotecan.
What is PCI? What cream do you use? I keep seeing PCI but cannot figure it out. A woman who had cancer who owns a large horse supply store swears by Mega-Tex coat rebuilder by EQyss. It is light and smells of coconut. Its more common use is to grow horse forlock hair which usually does not grow much. She gave me a jar which I use each evening. Perhaps pure aloe vera gel might heal discomfort. I used it before and during the fallout.
Julie, I am sorry I never got back to you about your question about what drug my husband was on during chemo, it was his first round, they used Etoposide 500mg.164 1/5/100. He also had a shot each time to raise his wc and a bag of meds for nausea. He also had a shot of heprine in his belly before we left each time too. He had very little side effects and seemingly sailed through. He goes today to begin the journey called "radiation". Its his 56th birthday today too, happy birthday huh?? We are hoping for a good "present" from them! Take Care. Lucy
Ramona PCI is prophalatic brain irradiation otherwise known as WBR whole brain radiation. It's precautionary designed to get any stray cells chemo doesnt get. I've been using silver sulfanide (prescription)
Lucy, did he not have a combination with the epotoside? I had to take my chemo journey and radiation journey at the same time. It went well and I'm sure your husband will do well. Maybe they can play happy birthday while he's on the table. My dr's office had cd player and they'd ask you what you wanted to listen to. Kinda took your mind off the machine noise.
Tell him I said Happy Birthday!
Thanks ladies
Julie
I had radiation and chemo together. I experienced pain on my scalp the day before my hair started falling out in clumps and for a couple of days - nobody told me about this so I was quite surprised.
Hi - can anyone tell me what the usual number of PCI treatments will be for ED-SCLC. (how many & how long each time). We will be soon meeting with a radiation oncologist to discuss Dad's PCI (providing MRI we are having this week looks good). Dad is stressing (as are we all) and is also worried about the side effects of the PCI(his onc thinks he will handle it well). His cronies tell him all the worst!!! Any input would be appreciated.
I had 13 treatments but then I have limited SCLC. They only take about 5 min once you get to the table. I'm probably not the one who should be answering ?'s about side effects because I just finished. Basically I've had every effect they said people have but they haven't been as extreme as I was fretting over.
thanks jadams - my dad is 72 years old and has tolerated his 6 rounds of chemo really well with almost no horrible side effects. so. . .pci is our next consideration, but with such mixed reviews it seems a difficult decision. dad will probably do it because his onc seems to feel he can tolerate it well - we will see what the radiation onc tells us. glad to know that your side effects so far haven't been so bad.
maria
you're welcome
let us know how he does
Julie
Julie
When my hair fell out my scalp really did hurt. I did some research and that is common for your scalp to hurt.
I went out and bought Nioxin scalp treatment and also the shampoo and conditioner. Wow did that feel much better. When you apply the nioxin to your scalp you can feel it tingling and feeling as if it were cooling off. You might want to try it. If you know a hair dresser they can get it at a store where they buy their products for the shop or you can get it at Harmons at a higher cost. I must admit it is expensive but worth it.
I am fortunate I get it at the store for hair dressers since I worked for the local police department and they let me buy their as a courtsey.
Good luck
God Bless,
Linda
it's not as bad as it was last weekend, but thanks I'll put my hairdresser on it!
Julie
Julie-
Pure Aloe Vera that you can get at any drugstore helped my scalp when I lost my hair from radiation.
Also, I used baby shampoo through my treatments, I was told to use that because it is so mild. I always wondered what I was to do when I was bald....use shampoo or soap on the bald head?
Julie, I didn't have PCI but chemo made my scalp very sensitive. All my hair came out and I'm sure those follicles were being zapped by the chemo. It's probably the same way with PCI.
Best wishes,
Bette
Well I decided this time I was not going to get it shaved because it was not very long from the chemo fallout. I now have a mohawk! You can almost see the shape they outline with masking tape on your mask.
LOL habits die hard, I used shampoo on my bald head.
Thanks gals
Julie
Well I decided this time I was not going to get it shaved because it was not very long from the chemo fallout. I now have a mohawk! You can almost see the shape they outline with masking tape on your mask.
LOL habits die hard, I used shampoo on my bald head.
Thanks gals
Julie
Just remembered. The wig shop where everyone there has had cancer strongly recommends Sea Breeze to spray on available at drugstores. I never got it. When Chemo started I saturated a cotton ball with aloe vera for my head twice a day in the hopes of saving my hair. I didn't but it didn't hurt very much when I lost it on Easter. It is now very thick as before and 1/4 to 1/2 inch long. When I was totally bald I still used shampoo but not for any reason other than habit. I never got a wig partly because of cost. I use scarves and an ocassional hat. The very short hair is tolerable; I hated the bald.
Yes a bad hair day is better than a no hair day, any day.
hi
my scalp got very sore before my hair started falling out and it stayed sore till my hair all fell out. I did not have brain radiation yet, but my doctor said my hair would not fall out. but from what i have read on here. my hair is going to fall out again, and it has just started to grow back from the last chemo tx at the end of july. it is approx 1/2 long now.
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