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Good morning,
I hope you are all doing well. We're doing pretty good so far. My dad started his txs on Wednesday-- he had 3 rounds of chemo during his overnight stay on Weds. and has had 3 rad. tx so far. He's got the weekend to rest up for his first full week of radiation and has 2 more weeks until his next overnight chemo. stay. The information you guys have armed us with has been priceless! Thanks, again, to all who are so open about sharing your experiences!

We have encountered 2 'problems' so far which I'd like to throw out to you all. Any advice you could offer would be VERY appreciated!

1. What lip balm product did you use? My dad's lips are very dry. The dentist gave him a sample tube of Salagen lip balm, but he was just wondering what else is out there.

2. My dad can still, luckily, eat for the time being. However, he's finding that he's getting more and more nauseous as the days go by. Are the food effects completely different for everyone, or are there specific foods that trigger nausea with the Cisplatin? He was wondering about his Diet Pepsi, too. Good idea or bad? He was afraid of the carbonation, but didn't find any info. in the numerous books he has at home.

Thanks, again, for your information. We REALLY appreciate it. I'm so glad I found this forum!


Cheryl
Daughter of Lance-- diagnosed 12/26/04 stage IV SCC, neck dissection 2/1/05, tx started 2/23/05, ended 7/05. Doing AWESOME!
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Hi Cheryl, I used regular chap-stick (and still do) I also used Biotene mouthwash just to "wet my mouth. If he dosn't have a humidifier, get one. It helps with all the dry things (mouth throat etc.)

I can't help with the nausea because I didn't get chemo. The carbonation question is interesting. Some here couldn't do carbonated beverages some could without problems. A few people here have commented that carbonated drinks helped their mucositis. I found them to cause pain.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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I found that carbonation helped to cut the mucous a bit, but there was a time when I had too many burns & sores to tolerate it. Diet is probably easier on the teeth.

I used Epicuren lip balm and it was very effective. We tried a lot of different things (my wife is an aesthetician and specializes in that sort of thing).

ANYTHING can trigger nausea with Cisplatin - especially odors of any sort - perfume, food cooking, etc. There have been many threads on managing nausea if you search the archives. Stay in touch with the doctors on this. There are many different anti-emetic medications out there. I also found that the nausea episodes got worse the more chemo infusions I had. Everyone responds differently to treatment so his experience may not be as severe.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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Cheryl,

We are starting week 5 in the morning. Harry is going into the hospital for his second chemo tx. He has the mucocitis really bad and uses the Biotene which does seem to help a little. He also drinks a lot of whole milk. Why? I have no idea but he seems ok with it. He is afraid to try anything carbonated because the sides of his tongue are excrutiating.

As for the nausea, we have had a real battle there. Harry reacted very quickly to the chemo (within 12 hours) and he was very sick. While he was that sick, it did not seem to matter what they gave him, nothing worked.

But in the weeks that followed we have come up with a regimen that works. We have home health because he has not eaten solid food in almost 4 weeks now, since day 2 of tx's. He dehydrated last weekend and the doctor drew the line. I give him IV fluids everyday and now I give him both compazine and reglan 3 times a day by IV push.

The good part is that we are able to stop the nausea, the draw back is that he is like a walking zombie. He falls asleep standing up and I have to watch him very closely.

I guess for everything that works there is a downside. He cannot be around anything that is aromatic. I try not to cook in the house if I can avoid it. When I do have to cook, he stays upstairs with the door closed and I try to cook things that aren't as smelly.

We do use the humidifier and that is a must as far as we are concerned. I got that tip here on the board and it has made things much better. There is also a mouth spray that you can get at almost any drug store called StopperZ. It helps with the mucus.

I hope that some of this is helpful. It is always hard to know what to try because everyone reacts different. But then that is the beauty of this place... you will get lots and lots of things to try and that certainly increases the odds of finding something that works for your dad.

Good luck to you.

Cindy


Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!
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Adding to what Cindy said, I also used compazine suppositories when I was too sick to keep amything down. I had to be rehydrated twice - once in the ER and the second time in the infusion unit. It is MUCH faster and better getting rehydrated in infusion and it offers substantial relief. Cancer patients, in general, need at least 2-3 liters of water each day (4-6 12oz bottles).

I also had a lot of nausea due to severe constipation from the pain meds so you must have that issue managed also.

I was definitely a zombie as well. I don't even remember half of what I did or said for a time there.

The good news is I am fully recovered now.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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Cheryl, I didn't have the problems your dad is having. My lips weren't very dry and on the few occasions where I needed something, chapstick did it for me. As far as the cisplatin, I had a problem with the first antinausia meds they gave me in the hospital. After they changed that, I had no nausia problems to speak of. Cooking sometimes bothered me, but not enough to get off the couch and go to another room, so it wasn't that bad. Have them try some other antinausia meds before administering the cisplatin. That may help. I got to the point that I left the hospital the day after the cisplatin was administered. Hated being in the hospital.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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Thanks everybody! I will pass this on to my dad. Once, again, you are all wonderful. I'm counting the weeks until we can be in your shoes looking back on the experience and helping others going through it!

THANKS SO MUCH!


Cheryl
Daughter of Lance-- diagnosed 12/26/04 stage IV SCC, neck dissection 2/1/05, tx started 2/23/05, ended 7/05. Doing AWESOME!

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