This past Wednesday John was 9 weeks out of treatment. He is slowly starting to eat some things by mouth. He has no appetitie and really has to force himself. He is still using the feeding tube - thank God he had that put in. He really didn't want to and really thought he would make it through without one. Even with it in he has lost close to 30 lbs and currently weighs 144 lbs. His weight has remained stable for the past few months but he really wants to gain weight and get rid of the feeding tube. I ordered the Carnation VHC for him so hopefully that will help.

Today he had a check up with the Medical Oncologist. His white blood count was only 2.4. His blood pressure was 80 over 60 and his heart rate was up so they gave him some IV fluids to rehydrate him. John has a kind of weird thing going on. He has permanent hearing loss in both ears from the Cisplatin. This didn't show up until he was done with the chemo. He still has ringing in his ears but every once in a while he "hears" a swishing noise in his head. He said it isn't in his ears, it is in his head. He said it sounds like sand in an empty can. He asked the doctor and he said he had never heard of that one. Any suggestions? Have a great weekend and a Happy Fathers Day.

Slim,
keep up with all fluids no matter what!! Even through the Tube if that will help, but do make sure you swallow as well daily. Eating takes time and he will slowly improve. Be sure to search the site for easy foods to eat.

Do not be so eager to get rid of feeding tube, it is a very important for his recovery. I did not get mine out until 9 mo.

He will slowly improve..about 3 mo. he should see a small improvement and then again at 6 mo. His body has been through a lot. It needs time to heal. High protein will help in healing along with rest.

Hearing loss, may improve in time. How much is hard to say, that takes time too.

Take care... Diane

That hearing loss is one of the adverse side effects of the Cisplatin. I lost my high frequency hearing in both ears so distinguishing voices in a crowd is difficult as well as soft and female voices. Hearing the ringing on some cell phone rings are impossible. I was told mine might recover but it didn't.

This recovery takes a huge toll on the normal body. Even though I was downing over 3000 cals each and every day and often eating any fattening thing I could, I did not start to gain any weight until well over a year post Tx.

My husband had one dose of Cisplasin and he had a lot of problems with his kidneys they were afraid of permanent damage but they have come back. They changed his chem to Taxol and Cabloin (sp) which seems to work better for him. He is done with chemo for now.
His blood pressure was low and his heart rate high today and they said he needed to work on getting more fluids. I have been putting a lot of water into his tube today and will continue to hope that helps. He is no longer able to eat anything by mouth. We have four radiations then were done with treament. Then I say to myself what then? What happens?
Pat

re: cabloin (sp) -- Could you be referring to carboplatin? It's a sister drug to cisplatin.

I received carbo in place of cisplatin during a long period when there was a shortage of cisplatin. My onc explained that cisplatin is most widely prescribed because it was the first drug in its class to be tested and proven. Hence there is a wider body of evidence for its effectiveness than for sister drugs in its class. (My translation: "Nobody ever got fired for buying IBM.") But that does not make sister drugs any less effective than cisplatin.

Still, doctors habitually prescribe cisplatin as the drug of choice -- this despite the fact that carboplatin reportedly produces milder nausea effects than cisplatin.

Possibly (but only possibly) for this reason, nausea was never a major issue for me, despite four rounds of TPF prior to radiation and additional chemo. In fact, after the first couple of weeks I gradually reduced my Zofran intake to a level that was just sufficient to ward off nausea. It was far less than the prescribed dose.

(Note: TPF refers to a common tumor-fighting drug combination; the "P" refers to any of the platins including cisplatin and carbo. As I understand it, the "F" -- short for 5-FU or 5-fluorouracil -- is also a powerful nausea inducing drug. But I wouldn't swear to that. Check with higher authority.)

You are right that is the name of the chemo. Sorry I am not good with all the terms here. I need to get someone to help me do a better job on my signature as well. I was never told the staging like some people show. They just told stage four because the lymph node was involved and also that the size of the cancer was the size of a golf ball. I don't think I always know the right questions to ask.
Pat

My ears still at times ring or buzz or something nasty. I'm glad it doesn't last long when this happens,.

Wanda.... I know exactly what your husband is talking about. Its a very very odd thing to hear/feel. Its also really hard to explain to someone what it sounds like. Its almost like a throbbing in your head. I think mine is from the tubes I had to have put in my ears to do the hyperbaric treatments. Only my left side is affected, which is also the side my cancer was on both times.

I just wrote down a recipie for a milk shake for Bill (wfc). This might help yoru husband with keeping his weight stable. I drank several of these per day to keep my calories up. This should be in addition to the PEG feedings and whatever he is taking in now. Even with the PEG tube, I still lost 65 pounds but it would have been much worse if I hadnt discoverd these at the end of my treatments. Here it is again:

3 cups chocolate ice cream
1/2 cup peanutbutter
2 or 3 cups whole milk
1 scoop carnation instant breakfast powder
1/3 cup chocolate syrup drank the shakes.

Now that sounds familiar Christine. I have to try one again soon.

Yeah, my hearing is crap and it hasn't been doing any better during HBO. I too have the "swishing" sound and I feel stupid everytime I try to describe it to my HBO doctors...they look in my ears and say "well the ear drum looks fine" and then dismiss it.

I lossed over 70lbs, most of that weight was lossed after chemo, I dropped a good 30lbs after my surgery and haven't been able to gain any back until being prescribed steriods a month ago...now I look like I'm 21 again but lack the strength/endurance...and of course my face isn't nearly as pretty.