| | Joined: Feb 2011 Posts: 8 Member | OP  Member
Joined: Feb 2011 Posts: 8 | Hello Out There,
We have tried every med out there; zofran, reglan, compazine, emended, lorazepam, etc... and the nausea continues. My husband can vomit up to 8x a day and is at therapy center for hydration 2-3x per week. He has a PEG and pump feedings are at 35-45 mls/ hour, and he can barely tolerate this. I am going crazy running from pharmacy to doctors and then back again. I am exhausted!
Any opinions and advice???
Thanks, Tina
Primary caregiver to Lewis age 50. Non-smoker, radiation 5x per week, cisplatin 3x over eight weeks. Stage 4A; tumor and two lymph nodes but contained.
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Well I dont see Marijuana on that list and it has been suggested to you before, it is legal and available in your state. I've tried every anti nausea drug and none are as effective.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Caregiver,
What worked for me was a combination of Emend and Aloxi which I received on Tuesdays with my weekly chemo drugs. That would be followed up on Fridays with another dose of the Aloxi and a bag of fluids. Keeping the dehydration at bay helped tremendously with the nausea.
Reglan, companzine and zofran didn't do anything for me at all.
- 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: Feb 2011 Posts: 8 Member | | OP Member
Joined: Feb 2011 Posts: 8 | Dear Eric S,
I forgot to add "herbs" to the list. We tried it and it got him stoned but did not help with nausea or appetite.
Thanks for the suggestion again!
Caregiver 88
Primary caregiver to Lewis age 50. Non-smoker, radiation 5x per week, cisplatin 3x over eight weeks. Stage 4A; tumor and two lymph nodes but contained.
| | | | | Joined: Nov 2010 Posts: 167 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Nov 2010 Posts: 167 | Very difficult situation. Ask your Doc about TPN (Total Parenteral Nutrition) This provides liquid nutrition into the bloodstream, bypassing the GI tract. The situation may not yet warrant TPN but it'll be good to get more information from your MD and know your options.
Is your husband still on Reglan? It has been found to have a negative effect on swallow with some and should be used conservatively with a population that's already prone to a decrease in swallow function.
Hope you find some answers very soon!
Jennifer (39)
02/10 SCCa Tongue & Base, HPV-
03/10 Partial Glossectomy & ND 11/10 Revision due to additional nodes 12/20-2/2/11 IMRT & concommitant chemo 2/11 PEG in 3/11 PEG out
Back at work and feeling good 03/24/11!
12/20/11 - 9 month f/u PET/CT - all clear!
| | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | John had to take both Compazine and Zofran together. His nausea contined for a few weeks after treatments ended. He couldn't talk for about a month without gagging and throwing up.
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | 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 | Nothing worked for me as well and they finally convinced my butt my first week post Tx that I needed a nasal tube. I also went off all pain meds as I thought they were contributing to my nausea. Two weeks with the nasal tube really turned my situation around. Pulled it out and never looked back. I survived my Tx despite myself.
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: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Tina, I'm so sorry to read this. Nausea is the worst. I had it 24/7 for three months following radiation and thought I was going to go out of my mind. Unlike Lewis, I finally found some relief with Compazine... although it might just have likely been my body saying enough was enough.
I'll keep the good thoughts flowing your way. It sounds as if you've been doing everything possible, and the previous posters have also added some good ideas.
This stuff sucks. But all in all it beats the alternative.
David2
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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