Good news Geri. Glad that they have perfected his drug combination now and I hope that the lesser side effects continue. Enjoy your weekend.

Patty

Hi Everyone, Things are going well for Richard at this point in time. He is still managing to eat soft foods along with using the Peg tube. His taste is gone, but he wants to continue to eat as long as possible. We have 12 more radiation treatments and 1 more chemo to go. The RO told him he was doing "splendidly." She must see some pretty bad cases. Every waking hour is spent keeping track of calories and nutrition. We are also walking and doing things around the house. All and all on an even keel.

I have a question for those of you who had cisplatin for chemo. Do you know your dosages either weekly or the 3x cycle? Richard dose was lowered for the 2nd chemo and the RO said that this is normal to do after the the bigger dose for the first one. It's probably because of the blood work, but the MO said that his 2nd dose was a therapeutic one and it was fine to lower it. I was just curious about how much the weekly dose is and what others received. His first dose was 196 and the 2nd was 110. Any feedback would be appreciated. Thanks, Geri

Geri,

Bill received Cis weekly - 40mg until the 7th week and it was lowered after he was hospitalized (fever, neutropenia) to 30mg for the final treatment.

Deb

Glad to hear things are still relatively good..sounds like he is tuff and he has a great nurse! The fact that he is getting optimal hydration and calories is most probably helping him the most. Hang in there, you are counting down to the end!

Deb, Thanks for your quick response. I noticed that they gave Bill Taxol along with the cisplatin. Maybe that's why his dose ended up being less then Richard's will be. Cisplatin is the only chemo drug he's taking. I guess the treatment for everyone is different depending on each case. The tumor is very small, but a node is involved. It's encouraging because we can feel the node changing and getting smaller. Only time will tell how things will work out. It sounds like your Bill is doing great now. Thanks, Geri

Geri,

Yes, Bill is doing super...eating most anything, taste getting better but not perfect, saliva is not great, but he is coping with lots of liquids. His weight has stayed steady at his post treatment amount of 195.

The difference in the Cisplatin amount I am sure has to do with the 3 dosage plan that Richard is on vs. the weekly plan that Bill had. I had to ultimately lay it in the hands of his MO...after we made the decision to go with Cis (even with Bill's hearing loss) and we got the blessings from the CCC to receive treatment from our local RO and MO, I decided I had done all I could to get the best treatment and would trust his doctor on the details of the treatment plan. I knew that it lined up with what I had studied and felt good about our decision.

Stay strong. Get a few minutes to yourself. Take one day at a time....

Deb

Hi Geri

Glad to hear your husband is still eating by mouth. Thats very important to continue this even without being able to taste. Sounds like he is doing very well. You are a wonderful caregiver

Sorry, I cant find my old calendar where I wrote my chemo dosage on. I do remember mine was similar to what you mentioned. The first dose was around 200 and the second one was around 140. My third dose ended up being cancelled. If I find the info, I will repost it.

Deb, I noticed that Bill had his Peg tube in for three months after treatment. Did he have trouble eating right away? The Peg tube nurse told us that they could remove the tube when Richard went a month without using it. I'm assuming that it is a gradual process to be able to get enough nutrition by mouth after treatment ends. I'm so glad our RO insisted on the tube. Also, what type of follow up tests did Bill have? I know we will both be very nervous about the first tests after treatment ends. Thanks for all your feedback. Geri

Geri,

I had 3 of just the Cis. The first was a non event; the 2nd was pretty bad and the 3rd was ugly but I'm sure the amount of radiation I had received prior to each one and the general state of my body both mentally and physically made the difference

Back in the day they weren't using the weekly option plan but I would have demanded it today subject to the MO convincing me otherwise..

Geri,

We return to Moffitt Cancer Center for each of Bill's followups. He saw them on October 31 the first time after his treatments ended on Oct 1/07. That visit consided only of a visual and tactile exam. The next exam in early January of 08 consisted of a PET/CT and then a visit with the doc for her exam and prelimary results from the scans which she was thankfully able to pull up electronically. It is such a help to have the doctor give us at least a preliminary the same day and keeps us from worrying so much waiting for the official report. He has since had one more PET/CT ..August that was also clear. As you can see, he is being checked quarterly.

RE: the peg. Bill was able to start eating by mouth within a week of his end of treatment. I contend that he received heavy duty antibiotics and hydration during his hospitilization that last week of treatment and it helped his recovery because once out of the hospital, he started getting better immediately even with the spector of three more radiation treatment (actually 6 more because it was two a day)and one more chemo. By week two post treatment, he was eating totally by mouth. We kept the PEG in at the suggestion of Moffit's doctor until after his first scans, but when they were good, she sent a nurse in and yanked it that day. We were both kind of shocked that they offered to do it but it was nice to get it out. He still has his mediport...we keep dragging our feet scheduling to get that out.

I still remember how happy we were to take the two cases of Nutren and all the peripheral tube feeding equipment to our RO's nurse to distribute to someone who needed it. It was like graduation day!

Deb

Hi,
The RO wants to have Richard try 2 infusions of the Erbitux instead of taking the 3rd Cisplatin. We are going in on the 17th to see the MO and Richard will probably start this coming week. The RO wants to make sure the node totally shrinks away and indicated that this change in treatment should work. The node is quite a bit smaller, but still not totally gone. She also mentioned that there could be scar tissue. He has 7 radiation treatments left, so they probably will fit the 2 Erbitux infusions in.
It was disappointing because we jumped to the conclusion that the treatment isn't working. I felt better after talking to the RO yesterday. She said that in some cases it can take a little longer for the node to shrink and since the dose of Cisplatin can be so hard on the body, she thinks he will respond better to Erbitux.
Has anyone had a similar experience? Should we get anything ahead of time for side effects from Erbitux. With only 2 infusions, the RO didn't think the skin reactions would be too bad. I know that I've read about immediate skin reactions so we will have to wait and see. I wouldn't have thought anything about this change if they had used the two drugs to begin with, but changing towards the end is disconcerting. Things are probably fine, but what a roller coaster ride this whole ordeal is. Thanks ahead for any feedback. Geri