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.

My Ins paid for it for the 1st 2 deliveries but then changed their minds and called if a food supplement. I started mixing Ensure into my oatmeal this morning. What a surprise, It tastes better than milk mixed in. Gives a good shot of calories too. 380 of them.

Typically if liquid feeding is prescribed they MIGHT cover it. Such as Jevity. Non-prescription, OTC, forget it.

Congrats on getting thru week 1. I also didn't mind the mask. The techies also let me bring in my own Cd for the 20 minute treatments.( I chose the soundtrack from Xanadu - "You've got to believe we are magic" and "I'm alive". Two of my favorite inspirationals) Anyway, if she experiences nausea, don't just assume it's always the chemo. I also had the fenytol patch and, bless my sister, she figured out that my vomiting was the patch and not the chemo. I was normal within hours of removing the patch. We replaced it with some heavy duty liquid painkiller via the tube. Had to play around with it to find the right one for me but they are "out there".

Hi everyone, my name is rose and i live in dublin, ireland and have been reading and trying to navigate my way round the site. I should be getting a call any day this week for the second clinic visit verification and a date then to start. 7 weeks of rad and 1 low dose of chemo cispatin per week. its good to be ahead of the game re side effects and i can see that i am in for a wonderful time..........thank you all so much for details. i had thought that i would be up and about as usual during treatment except for the last 2 weeks...

Rose. welcome to our home. Sorry you have to be here, but it is the best place if you need great people that understand what you are going thru.

I've been making my own feeding tube concoctions since the beginning (5 months) All with the help of family and the approval of the hospital nutritionist who reviewed our recipes. For a high dose of protein, I ingest 6 oz. cooked chicken (via the peg)6 oz is 48 grams protein. Chicken breast boiled for 7 hours, liquify in blender adding broth as needed then run thru a sieve. If it goes thru the sieve, it's going thru the peg! I make a big pot to last me a week or more. There are plenty of recipes on the internet for tube feeding but I must confess, my family knows the sites better than I do.

That is awesome! WIsh I had explored that instead of boring old jevity. Must make you feel so much better and give you so much more energy.

Hi Rose!
Ireland is a beautiful place. So sorry you are going through treatments.
Wishing you well.

Kate

I've been searching the internet for tube feedings and found a couple of sites and even just receipes from other various sites and have bookmarked them. They sound really tasty but it's just been a matter of Carol getting into the mindset of blended/pureed food via the PEG. A month ago I got a blender (who knew it wasn't just used for daiquiris! :)) and this past week I got a small crock pot and a strainer. In another post I had said Carol couldn't eat anything orally....well she made a liar out of me for the last two days. She had a craving for mashed potatoes/gravy and blended carrots that she ate orally. It may have only been a part of one meal for each day but she did it. Gotta love her. She said she could taste the carrots! And the potatoes didn't stick to the roof of her mouth. I'm sure that was because of the heavy topping of gravy. Mind you, she just ate a small portion, couldn't do more orally, but did also take a can of ensure w/whey protein that I diluted a little w/water. Her tummy doesn't growl as loud as it use to!

Carol's nausea was because of the chemo but it's under control right now with the compazine. The fentanyl patch @ 75 mcg/h is doing wonders for her right now, compared to a few weeks ago when she was only scripted lortab no matter how loud we got. She wears it all the time and changes it every 3 days (72 hrs) as prescribed and the stronger dosage of morphine she was given helps with the severe ear pain she gets on occasion. It seemed her ear pain was really bad during the 2 days she didn't have radiation (Saturday and Sunday).

the fentynyl patch was a godsend. I could actually function. Chronic pain is dibilitating.

If she can eat orally, let her, even if just small amounts and even when it tastes like cardboard. It keeps those swallowing muscles working and her jaw muscles working. Many totally lose their ability to swallow and have to relearn it after radiation because they don't swallow anything while on the peg. Good for her. Glad she can do it.

Take care,
Eileen

thank you misskate for the welcome and i will keep reading. rose

rose---welcome to the forum!

linda--andy loves the mashed potatoes with lots of gravy...this is the one thing he could eat thru most of his treatment.