Tomorrow is the half way mark of 7 weeks RT and 3 Chemo treatments. 3 � weeks in, 3 � weeks to go. Brian just had his second Cisplatin treatment today and is in bed resting. So far, things have been going fairly well. The cancer has responded and is shrinking and the lymph node is no longer lumpy.

Hearing loss is very mild, in the high end, and will be permanent. Scheduled for another hearing test next week.

Insurance will not pay for the nutrition ( Isosource) for the feeding tube, so we bought a few cases on the internet at a reasonable cost ( $33 a case of 24) and also contacted Oley Foundation. Oley Foundation was able to put us in touch with a donor and we just pay the shipping costs. ( shipping costs from MA to CA, about $16 a case).

His feeding tube was changed out to a low profile model, and he is really happy with it. Instead of a tube sticking out, there is just a flip cap to access. They call it a Mickey Style? Funny that insurance pays for this, but not the nutrition that goes in it.

He is using the feeding tube 95% of the time, not because of the difficulty of eating, but the taste of food is �soapy� , �metalic� or just plain fowl! He also has little saliva in his mouth, so he has difficulty eating anything that is dry.

The RT has not burned the inside or outside of Brian's skin, so there is no blistering that has occurred. We are hoping there will be no blistering at all in the course of treatment. We keep hearing, everyone is different.

His White blood cell count was at 1.6, just before his Chemo treatment, any lower they were going to reschedule his Chemo until his WBC got higher. To aid his WPC for his next treatment (3 weeks from today), they will be giving him a WBC booster shot tomorrow.

No hair loss has occurred. He has noticed he only needs to shave once a week.

Brian is doing remarkably well . Thank you for all your support and prayers.

Gianna

He has hearing loss and they continue to use Cisplatin? Why not Carboplatin?

Try Carnation Instant Breakfast VHC 560 cals in the 8 oz can. Order it without prescrip from the pharm dept of say Walgreens,Cvs or on the internet.

RE the PEG it is imperative that he uses his swallowing muscles as much as possible to avoid LIFELONG post Tx swallowing problems. Happens far to much when they develop a dependence on the PEG.

This is the time when most of us start to feel the effects of the combined chemo/rad and it will (can) get worse and worse until about the 3rd week POST Tx so just prepare yourself because if this does happen it's NORMAL.

Hair loss will be restricted to the rad field with his whiskers and the hair on the back of his head (exit path) will fall out. Everything returned except the whiskers below my chin line.

Get at least 3000 cals of "food" and 48 ozs of water in him each and every day.

Where was his primary?

Was he tested for HPV?

I agree with David, the hearing loss is not acceptable collateral damage. This needs to be discussed with the doctor and his chemo changed, Carboplatin is a great alternative. Its something that luckily I did not have happen and if it had, I would have spoken up.

Make sure Brian keeps swallowing every single day no matter how difficult or unpleasant it is due to taste. You do not want him to lose his ability to swallow.

If you go with the Carnation VHC, it can easily be ordered thru Amazon. There is a link right on the forum pages to go thru. This will give OCF a small kickback. It can be used for any Amazon purchase you make. The Carnation VHC bought thru the Amazon link runs about $46 a case with S&H included.

Good luck with his treatments!

Congratulations. Half-way there. My main hair loss was facial (not bad in the long run, lol) and the back of my neck, which I guess is permanent. When I wash my hair I still lose small clumps but nothing bad. You sound like an amazing caregiver. Good luck to both of you. I send healing thoughts along. I am just a few weeks ahead. TX ended 3/21. I am starting week three of recovery tomorrow. We will all get through this. -Michelle