#43496 06-26-2004 01:05 PM | Joined: Nov 2002 Posts: 458 Platinum Member (300+ posts) |  Platinum Member (300+ posts)
Joined: Nov 2002 Posts: 458 | Dan, I had Cisplatin and a bunch of other stuff, actually felt hungrier the night of the treatment and ate like a pig, well as much as one could under the cirucmstances. Didn't get nauseous at all, just some acid reflux easily taken care of with Tums, and that was probably becauase of the huge bowl of ravioli I ate.
I remember feeling pretty bizare during the chemo treatment, ordering up a huge tray from the hospital cafeteria (which in iteslf should have made me sick) and having a big meal, while the person 2 chairs down was hurling into the trash can. Never did get nauseous from the chemo, either time.
Bob
SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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#43497 06-26-2004 02:44 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 |
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#43498 06-26-2004 03:30 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Dan,
Keep in mind all my life when I even had tough exams, I felt nausea! When I drank alcohol, other than beer, I got nauseas. When a doctor mentioned I might have a side effect of nausea, it was all over. When I heard about five times that the treatment and medicine(s) could cause nausea, I got a little queasy in the stomach. Even scuba diving if I ever swallowed a mouthful of salt water, guess what happened?
We are all different and my shoe is bigger than yours, too!
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#43499 06-26-2004 10:38 PM | Joined: May 2004 Posts: 80 Senior Member (75+ posts) | | OP Senior Member (75+ posts)
Joined: May 2004 Posts: 80 | dan,
i'm so sorry that these posts have made you apprehensive. your experience sounds completely different from my sister's. she has never been on good terms with any medical stuff, so probably her feelings about the treatment add to the complexity of the side effects (like ed, i guess). more importantly, she didn't get a chance to regain some of her strength and recover from the surgery+radiation before a pretty aggressive recurrence necessitated the chemo. and she's taking very strong drug combination (cisplatine, dexoteris, 5fuv) which is probably why she's being knocked out so badly. latest update: she was feeling a bit better today and was able to feed a little and keep it down. she's trying and so are we. please keep up your spirit.
gita
sister diagnosed 11/03 SCC maxilla keratenizing stg IV T1N1Mx; 4-7 positive lymph nodes; dissection 12/03 left upper pallette removd; radiaton left side 35 sessions 2/04-4/04; recurrence same side 4/04; chemo began 5/04 incl cisplatine, 5fu, taxotere
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#43500 06-27-2004 05:36 PM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2004 Posts: 164 | Gita,
It does sound like your sisters situation is an extreme case due to being so close to surgery. I was on only carbo and taxol along with radiation after my surgery and in a much lower dose than I'm sure she's getting for the reocurrance. I had cisplatin, taxol, ifosfomide, and 5fu before surgery. Anything they gave me helped with the nausea. I started taking them before the treatment and continued for 2-3 days after treatment and threw up only once during my chemo. I was on Reglan, Dexamethasone, ABH, and a couple of others. I keep hearing about the great drugs, but now I'm hearing that there were so many that the great drugs did nothing to help. Like poor Ed, I think he got every complication and even added a few to the insert listing!
I was on Ultra-Cal HN with fiber. I never had tolerance issues with it. Someone mentioned 2-Cal to me. I think it has 450 calories per 8 oz can. This guy started it about 2-3 weeks into radiation and actually gained weight on it.
What really irritates me it there's probably not anymore risk for infection with a PEG tube than with the TPN. I have a PEG tube and have since November and have had 4-5 infections with the PEG tube. Part of the problem is me though. I'm still like a little kid, I can't stop picking at it. I'd push for the TPN. I think you get a better variety of choices of formula with that sytem.
I know she'll contine to get better. Keep us posted on her progress.
Lynn
Stage 3, N0, M0 oral tongue cancer survivor, 85-90% of tongue removed, neck disection, left tonsil removed, chemo/radiation treatments, surgery 11/03, raditation ended 1/04, lung mets discovered 4/04,
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#43501 07-05-2004 04:52 AM | Joined: May 2004 Posts: 80 Senior Member (75+ posts) | | OP Senior Member (75+ posts)
Joined: May 2004 Posts: 80 | update about my sister: she pulled through some very rough days, but the nausea finally stopped and for the past 2-3 days she's been able to feed relatively well. we're alternating between home-made foods and isocal and scandishake in different feedings to make sure she's getting enough callories as well as fresh nutrients. she still can't take more than 180ml of anything in one feeding though, so she has to feed every 1-2.5 hours. tiring, but way better than where things were last week. she's also off IV and able to keep hydrated. she's got one more round coming up this week. the task is now to keep up her morale.
good thoughts, healing and peace.
gita
sister diagnosed 11/03 SCC maxilla keratenizing stg IV T1N1Mx; 4-7 positive lymph nodes; dissection 12/03 left upper pallette removd; radiaton left side 35 sessions 2/04-4/04; recurrence same side 4/04; chemo began 5/04 incl cisplatine, 5fu, taxotere
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#43502 07-05-2004 06:28 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Hi Gita,
Thanks for the update. You have to take your victories where you find them. The finish is the hardest part. Try to keep her focused on the big picture, which is a cancer free recovery. Many of us went through similar misery and are doing quite well today.
I had to be rehydrated several times myself and it sounds like she is doing pretty well overall. It's a very hard treatment and there is no escaping that.
This is about a normal time for depression to set in. Talk to the doctor about a strategy or medications to deal with that.
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)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#43503 07-05-2004 02:40 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hi Gita,
Thanks for posting the good news. At least her nausea has stopped. Make sure she inputs enough to sustain and heal. If it takes 5 to 6 feedings a day, so be it. She will slowly start to feel better.
Gita, Did I miss it? What is your sisters name?
Wishing you and her the best,
Dan
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#43504 07-05-2004 08:45 PM | Joined: May 2004 Posts: 80 Senior Member (75+ posts) | | OP Senior Member (75+ posts)
Joined: May 2004 Posts: 80 | dan,
no, you didn't miss it. i haven't yet introduced my sister by name. she hasn't yet agreed to join this board and i can't but respect her wish for annonymity. i'm still hoping that she'll regain enough of her usual strength and outgoing self to join and introduce herself, in her own words. i relay to her some of the exchanges that take place here, so she hears of others' experiences and wisdom and knows some of the stories. i know that most of the times that has a positive effect on her. as i know that the collective support people have given me has been necessary and very positive for me.
good thoughts, healing and peace.
gita
sister diagnosed 11/03 SCC maxilla keratenizing stg IV T1N1Mx; 4-7 positive lymph nodes; dissection 12/03 left upper pallette removd; radiaton left side 35 sessions 2/04-4/04; recurrence same side 4/04; chemo began 5/04 incl cisplatine, 5fu, taxotere
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#43505 07-05-2004 09:18 PM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 482 | gita, I understand your sisters position. My wife wanted me to go onto this board when I was in treatment and I didn't as I didn't want to know what was coming. I knew I could deal with whatever happened, but didn't want to have to anticipate what was coming. So I didn't join the board until after my rad/chemo was over and while waiting for surgery. Surgery I knew about and didn't worry as I had had my tonsils out a few months earlier. If your sister is still having caloric problems, I used to mix instant breakfast and milk with my ensure and took it through the peg. Two a day was 1000 calories, and another two just plain was 1700 calories/day. That seemed to stop my weight loss and it was all uphill from there. Will pray for her continued recovery.
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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