 
#45932 09-07-2005 02:11 PM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Jul 2005 Posts: 624 | Hi --
Asked around to day as to why some folks are getting cisplatin and some are getting other drugs like carbo, couldn' t get a clear answer other than it is apparently a matter of individual dr's opinions. Luckily our MO is a person who listens and is willing to give us the info needed to make informed decisons. It also helps to read the literature!
For our initial wariness re cisplatin, however, I thank our veterinary oncologist as she said she wouldn't give it to our dog because of the side effects. So Twinkie got carboplatin and trotted out after each treatment as happy as a clam. Barry's MO was amused when I said Barry was getting the same treatment as our dog (carbo and concurrent radiation, albeit only with palliative intent for the dog).
Our MO also said, it is the radiation that is doing the major work in this treatment, the chemo just helps it. So missing a cycle or swiching to a somewhat less effective drug may not be as serious an issue as say, missing some of the radiation treatments because the chemo has made you so sick you have to have a break.
Gail
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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#45933 09-08-2005 01:54 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi Michael....thinking of you and hoping you are having a better day....I am glad Zach is with you, I would be lost without my little "Cody". He is my 12 year old cairn terrier and my buddy!!!Drop a line when you are up to writing....Take Care, Carol p.s. sorry I can't be of more help with the chemo dilemma...I had radiation after surgery and that was enough right there!
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#45934 09-08-2005 06:52 AM | Joined: Jul 2005 Posts: 54 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jul 2005 Posts: 54 | Hi Michael,
Just wanted to give a quick update since my last message to you was how awful John was feeling and I blamed the cisplatin. He's much, much better 24 hrs after getting IV hydration. I'm not sure if it was the chemo or radiation that weakened him so I don't want to color your upcoming decision about chemo #2. He wants #3 next week if they will offer it to him (depends on his labs and status). Both MDs seem to feel 2 rounds are enough given his good response to treatment. We'll see what happens. I think we're starting to see the light at the end of the tunnel so I hope you will soon follow on the road to recovery!
Peace and all good things,
Janet
Caregiver, Husband diagnosed 7/6/05 SCC left tonsil, T2N2bM0, Concurrent chemo/radiation begun 8/2/05 (Cisplatin). Received 2 cycles cisplatin, 38 radiation treatments. Completed course 9/27/05.
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#45935 09-08-2005 11:04 AM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2005 Posts: 349 Likes: 2 | hey all...
I've been sitting here in the Chemo ward for a few hours.
I'm all plumbed and ready to go. I've gotten a couple liters of saline and feel great!
We're waiting for my urine output to increase and then the poison...Uuhhm, cisplatin will start.
It's taking so long for my urine output, they sent me to my radiation tx while we're waiting and I just got back a few minutes ago.
Seth and my Mom are here, and we've been in the hospital since 9:am today...Uuugh, we'll problably be here until around 9:pm or 10:pm tonight..Oh well..I still think it's better than doing this in-patient.
I had to get a new IV line, but the nurse was gifted and I barely felt the needle.
My WBC (1.7) and other labs were bad this morning, but Dr P said it was my call to go ahead or not. So, like a true gluten(sp?), I said sure.
He said they are concerned about the hearing loss and nuropathy that I've had, but he doesn't think that it requires changing chemos right now. Maybe for the 3rd tx, which 30% of his patients don't get anyway.
Ok, so now back to why I feel GREAT right now...
I think it's due to the steroids they gave me via IV a couple of hours ago.
I am concerned because I've read that steroids can encourage cancer cells, but I feel so good from them that right now I'll ignore that.
Thank you all for posting your thoughts....I read them daily, even on the days I'm too exhausted to post.
Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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#45936 09-08-2005 11:20 AM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | Hello Michael
Wishing you well, you are in my thoughts. Your inner strength is inspiring.
Love from Helen
RHTonsil SCC Stage IV tx completed May 03
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#45937 09-08-2005 11:26 AM | Joined: Jun 2005 Posts: 6 Member | | Member
Joined: Jun 2005 Posts: 6 | Hi Michael, Seth and Zach also and Heather who we have never had thae chance to meet yet. Just to let you guys know we watch this site daily to see your progress yes I said progress! We were also worried when we did not see a post for a few days. Our prayers are with you often and we will be up to visit as soon as you are home and up to it.
Ken and Keith | | |
#45938 09-08-2005 03:18 PM | Joined: Jul 2005 Posts: 150 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Jul 2005 Posts: 150 | Go Michael Go!! Wooo Hoooo! I think hydration is a huge thing. My dad looked and felt awful Tuesday-They infused him with tons of fluid and tonight he looks and feels GREAT.
We have 3 more radiations and ZERO chemos-3 of 3 done!
You will get here, keep the fluids a flowin'. You are Mr. Popular, I also look every day for your posts.
Dad Treated for T2N1M0 Tonsil Cancer August 2005. 35 IMRT radiation, 3 doses Cisplatin. Selective Modified Neck Dissection November.
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#45939 09-09-2005 01:52 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Michael,
Yep, steroids can make you feel much much better than you should be feeling! I've never read that they can encourage cancer growth and I'm glad I didn't because decadron was a pretty regular part of my treatment from the second chemo on (I also got it for nausea from the amifostine).
I'm glad you went ahead with the second chemo (thogh perhaps by now you are not). MY WBC was about 1.7 when I got my second as well. Just keep telling yourself THIS TOO SHALL PASS.
And I'm SO glad your dog is there with you. I guess Seth must be busy dog-walking as well--can't imagine having a lab in a small aprtment unless they are getting a LOT of exercise each day! But having your dog around when you're sick is veyr important. Silly though it sounds, it's one of the reasons (having my husband around was another) why I didn't want to go elsewhere for rad/chemo treatment and was willing to try the facility here even though the rad set-up was very new.
Hang in there--just a few more weeks now.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#45940 09-09-2005 01:59 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi Michael, thanks for checking in. Glad to hear you are feeling some relief. That is good news!!!!!Take Care and know we are thinking of you! Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#45941 09-09-2005 02:59 AM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2005 Posts: 624 | Hi Michael (and company) --
Gald to hear that you are ding better and that maybe the hydration will help solve some of the issues with the treatment. I know our nutrtionist said the hydration was *much more important* than the food when getting chemo (tho of course calories also count!).
Hope your dog is enjoying NYC! Have only had the dubious pleasure of trying to walk my dog for a couple of days in the city while at Westminster dog show -- not a lot of grass. Up by Sloan it's better...
I agree that having a pet with you is a great boost, we have three dogs and they are giving us a lot of support and love through all this. Also insist on their walks so it gets Barry off his chair and out exercising (tho we don't do the long walks now...)
Keep it up, you (and we) are on the count-down slope now!! Hard to believe it was only a month or so ago that you guys started...
Gail
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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