| | Joined: Apr 2009 Posts: 104 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Apr 2009 Posts: 104 | Thanks for all the input! The main problem is the persistent nausea/GERD despite the meds for that (which help but still). Thank goodness he has the PEG, though, b/c otherwise nothing would be getting in!
GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | mgmichael,
Have you mentioned the nausea to the docs? I had to try a couple of things before mine was under control, but what a difference when we got it right! There are lots of drugs out there for nausea, the trick is to find the one, or combination, that actually works.
- Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Apr 2009 Posts: 104 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Apr 2009 Posts: 104 | They gave him Compazine to start, then Zofran, then added Reglan and Ativan. He hasn't vomited, just never feels very settled in the belly!
GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | That's exactly what I had, no vomiting, but a really sour, icky belly which made it really hard to eat. Zofran and the others did absolutely nothing for me. I ended up with a combination of Emend and Aloxi, which worked beautifully.
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Apr 2009 Posts: 75 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2009 Posts: 75 | HI;
My dad had the same problem. He had terrible nausea and although he had a PEG he still could not keep any food down. We tried all the medication that others mentioned and even had a GI test to make sure nothing was wrong with the PEG. Nothing was wrong and the nausea passed. He did end up in the hospital several times with dehydration. So, force the water, even if he cannot tolerated the food.
Good luck,
Boston
Squamous cell / BOT with lymph node involvment, Stage 4, HIV-, cisplatin 3 weeks of 7, stopped due to kidney issues and neuropathy,35 radiation treatment started 5/6/09,started weekly erbitux on 6/2/09. Completed tx on 6/24/09, biopsy 8/11/09 clean, PET Scan 10/5/09 clear, PET Scan 6/11/10 clear
| | | | | Joined: Jun 2009 Posts: 24 Member | | Member
Joined: Jun 2009 Posts: 24 | I started with Fibersource HN, but being diabetic, it really caused my blood glucose levels to go through the roof. I now use Glucerna 1.2, and my BGL has been normal since I made the switch. The PEG has been a big help in my recovery. I also had the nausea (and subsequent dehydration) at first, but it diminished within the first few weeks post-tx. Hang in there... it gets better.
Dana, Male, Age 52, DX 11/08
SCC right tonsil, Stage 3. RND, tonsilectomy, and PEG install done collectively 12/26/08, Cisplatin x3, IMRT x35. Post-TX PET clear 9/09, PEG removed 9/09, PEG stoma surgical repair 9/17/09. Dx renal cell carcinoma 11/09. Partial nephrectomy 01/10.
| | | | | Joined: Jun 2009 Posts: 24 Member | | Member
Joined: Jun 2009 Posts: 24 | Oh, forgot to mention that the Glucerna 1.2 is 285 calories per 8 oz (237 mL)can.
Dana, Male, Age 52, DX 11/08
SCC right tonsil, Stage 3. RND, tonsilectomy, and PEG install done collectively 12/26/08, Cisplatin x3, IMRT x35. Post-TX PET clear 9/09, PEG removed 9/09, PEG stoma surgical repair 9/17/09. Dx renal cell carcinoma 11/09. Partial nephrectomy 01/10.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I was definitely Linda Blair's dad!!! I threw up so much that I had what I'll call a gag reflex for many months post Tx meaning everytime I ate or drank something I immediately had this urge to toss cookies. I think my bout with nausea was by far the worst part of my Tx followed closely by Mr Nausea's friend and companion, Mr Constipation.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Aug 2008 Posts: 238 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2008 Posts: 238 | That doesn't sound fun at all.. even for Linda Blair's dad!!! Does the CIB VHC work well through a PEG? My Mom's getting her PEG tomorrow. I copied down the things mentioned above to use with a PEG too. Thanks, everybody - that will come in handy :o)
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I guess it depends on the size of tube because I have heard some say they used it and some say they were told not to use it because it was to thick but you can always cut the VHC with some milk to make it thinner.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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