Carol's first week of treatment is done. 6 weeks to go. She did pretty well having one REALLY bad day. She hasn't had the need for anti-anxiety meds while doing rad. She rather enjoys the feeling of the mask. Which really surprised me because she doesn't like anything near her face. She's in and out within 20 minutes. Her face is starting to itch but is NOT scratching it. She sees the RO twice a week - now that she was told. Carol wasn't informed when to see him, then it became a game of cat and mouse. The RO tried to chide Carol, but it was quickly put to rest. Need communication Doc.

Her 1st chemo went okay. She's getting carboplatin because she only hears out of her left ear. Too many side effects with the cisplatin especially the hearing. No need for her to become deaf because of the treatments, if at all possible. Her cocktail is
carboplatin, Dexamethasone (steroid) and Ondansetron (Zofran). Carol was originally told her chemo would last 4 hours, but it was 1-1/2 hrs. The RO said the 4 hours was only a baseline? She has been prescribed Compazine for nausea.

Feeding full time by PEG. Instructed by the MO and RO. But if at all possible eat jello or pudding orally. She was having difficulty with the feedings being too fast, but learned how to adjust the gravity flow. She's more comfortable now, if that's at all possible!

Carol found out she is anemic so they prescribed folic acid. And she requested a baseline THS when doing the lab workup for her first Chemo. Done. When should she have her THS done again while in treatment? The MO has prescribed Fenytol (Sp) patch and Morphine, finally, for her pain.

All in all it was a pretty good week for Carol, she finally had gotten her head wrapped around everything....then the snail mail arrived yesterday (Saturday). She was awarded SSI and Medicaid so the treatment facility has dropped her for "charity care". Yep, everything came at once. She needs to reapply for assistance at the facility, which hopefully won't hinder her scheduled treatments. If they only had a heart. But...I started another topic regarding this next adventure. Round 3 or is it 10? I lost track.

Happy Valentine's Day to all.

happy valentines day elcee!
andy did 3 rounds of chemo with cisplatin (he was already deaf in one ear before treatment) and his hearing actually came back. thru radiation/chemo (carbo), he lost the hearing in one ear and almost deaf in the other. but his hearing is coming back...faintly...after 11 days out.
is carol on PEG full time because she cant eat orally?? i would think to eat orally as long as possible and supplement with the PEG.
glad to see she got pain meds. stay on top of this.

love the "snail mail" comment. all tooooo true! although they dont hesitate to call when u owe them something!

great to hear week 1 is down! on to the next....keep us posted.

Encourage her to keep swallowing daily as those muscles can and will forget how to swallow in a quick time and she may become dependent on that PEG. Some of us, me included, never had the PEG and I have had ZERO swallowing isuues post Tx and I am going on 4 years now.

Glad to hear that week one went well. It would be nice if they had a heart, I agree. How horrible to have to deal with that also. We have enough to go through...

Teresa

Carol has always had problems with her ears and sinuses. Even having problems with her right ear because of the tube. She was so use to it she ignored her pain in her left ear. Then she started having problems with eating and swallowing, hence the first ENT visit and after that she was told Stage IV SCC. She hasn't been able to eat any food orally since. She has tried but it gets stuck and water doesn't do the job. She has even choked. Believe me she would rather go orally than the PEG.

David

She can take water orally and drinks a lot of it. The Drs have told her it is important to work the muscles everyday so she doesn't get other complications. Food intake, no can do orally. She's choked on jello.

Suzanne

After awhile you learn how to plow through!

Linda

Glad her first week went well. I also second what david said about drinking. I quit drinking fro a few weeks cause it hurt too bad and nearly lost my swallowing function. I am not having to work at getting it back and the pain is terrible trying to work those muscles back into shape. I even tried to drinksome boost and it was too thick for me. Anyway just make sure she keeps drinking. You gals are going to get through this. You are a great caregive, I can tell.

Angelia and anyone else out there, first off try Carnation Instant Breakfast VHC as it has 560 cals in the same size can and also I use to mix it half and half with whole milk.

wow linda, thats terrible. our greatest advice on here is to eat, eat, eat as long as u can--and that is taken away from carol. but please take davids advice and try the carnation.
i agree with angelia that u are a great caregiver! hang in there sweetie!

I bought whey protein that has 270 calories and 52g of protein in every serving and add that to the ensure, adding a little bit of water to thin. I don't want to clog her tube! With Carol's BMI she needs min. of 2272 calories and 71g protein. I would like Carol to intake a min of 2500 calories per day. I know davidcpa has even recommended as high as 3000. Carol has just been approved for Medicaid and will find out today if they will cover enteral feeding supplies. From what I was told by the Oncologist's Social Worker they do and there's a local supply company that handles Medicaid. Maybe they carry Carnation Instant Breakfast VHC 560. Does the RO have to script these feeding supplies to be covered by the insurance? I assume they would due to the medical treatment she has to have? AllegroMed.com has 96 cans of Carnation Instant Breakfast VHC 560 for $132.00 w/free shipping. Can't beat that with a stick as the average shipping per case (24 cans) is $11.00 from other sites I've seen. Is this a good price? Averages out to $1.37 per can. I will dig into the tight budget to get what Carol needs. Bill collectors will have to take the rear seat in a 7 passenger van......and use snail mail. LOL

I have to say it again. This site is fantastic. Without it I would be banging my head against a brick wall.

Linda

the MO should be able to help with this. mine helped get it approved, then i had to call the supply co and get their azz in gear. after i called, they had all the supplies delivered to our house within 3 hours.