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#144260 12-26-2011 08:40 AM
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This is my first time posting, I have sat back and read alot of information on here and followed a lot of advice that has helped tremendously with my boyfriend. he was diagnosed stage 4m base of tongue & nodes. His treatment protocol started with the induction chemo (taxotere, cisplatin & 5FU) he got thru that & now is on chemo/rad. Chemo 1x a week (carboplatin) and 33 rad. He has had 20 treatments so far and has been living on the VHC carnations & boosts with protein powder or weight gainer. Those have gotten pretty horrible lately and we are looking for other possibilities. His naseua has also stepped up the last few days. Things tend to come back up. He is on zofran as a preventative and for " break thru" compazine. But the thickness/texture of the shake, even water.d down is becoming hard, not so much from the pain, no narcotics yet, but the naseau. Thank you very much for any ideas. Merry Christmas!

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Hi, and welcome. I'm so sorry to read about the nausea and can definitely relate. You might look into Carafate which is an older line med, a liquid. Personally it didn't do a lot for me but we're all different and it might help him. Others I'm sure will offer suggestions too.

Hang in there. It's great of you to be such a help to him. Your attention and care are as important as any of his medical treatments. You're a hero.

Sending good thoughts to you both.



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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Thank you David!

I will ask about the carafate tomorrow.

Any suggestions on other things to try and put in the belly that might work with the texture/ taste? Everything is repulsive to him. He can tolerate a little mango, but the shakes arent working so good anymore. smirk

Thank you again

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I so sympathize with you, and your boyfriend is lucky to have such a caring person as you to help him through this difficult time. David is right in that everyone is different in how they react to the treatment. My son only tolerated shakes for a short time. When I tried putting a small amount of "tasteless" protein powder in his shakes, he could taste it right away and refused it. He could only tolerate vanilla shakes with a lot of ice cream in it. As for the nausea meds, I think there are different suggestions the doctor could make. In my son's case (no insurance, not job, etc.) he felt that they started with the cheaper costing ones and if that didn't work, would try something else. Maybe you or your bf could check with the doctor to see a different nausea med would be more helpful. My son tolerated the low sodium chicken broth and sometimes beef broth. Later, very softly scrambled eggs. Sounds like your bf has come thru more than half of the treatments so far, so he is getting closer to the end. Keep in touch here and let us know what is happening.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Thank you Anne-Marie-
He says the mucous is so much it's hard to get "thick" drinks down, like a milkshake. frown
Trying a few things to help that, that I have seen posted and the doctor has said. But was just curious what worked for others, since like you said, everyone responds different. Wish there was a users manual!
Anne-Marie, your son is a lucky fellato have you!

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Welcome to OCF. Here is a list of things your boyfriend can try. It may help. Right now is when the going gets tough. I found my self hospitalized for malnutrition and dehydration. Please push him to get enough in every single day or he will be right where I was. Some members have gotten a nasal feeding tube if they are unable to keep up with their nutrition. Possibly a regular feeding tube may be necessary if things get too bad. Hang in there, this ride is almost over and soon things will improve.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=143744&page=1


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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My usually healthy (35 year old) husband just finished his treatment of radiation (34 treatments) & chemo. He would have not been successful with his treatments if he didn't have his g-tube. I'm crossing my fingers your boyfriends dr had him get that placed or will soon have him get it placed. The nausea is something that has onlygotten worse for us lately and we did our last radiation Dec 1 and Chemo was just about a wk before that.

Here is how Brian gets through everyday: 8 mg of Zofran is the backbone for Brian's nausea support (every 8 hrs.) We use 1 mg lorazapam every 4 hrs and 20 ml of phenigren every 6 hrs if needed for nausea.

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Not much, if anything, will appeal to him for weeks ahead so he needs to get use to swallowing for need. He needs appx 2500-3000 calories and 48 oz of water EACH and EVERY DAY from here until at least a couple of months POST Tx. With swallowing difficult now and only to probably get worse and the constant threat of nausea he needs to spend the least amount of time doing that as possible and the VHC is the easiest way to accomplish that as he would only need to swallow 5 to 6 cans a day plus 8 of those cans of water. I would stand over my bathroom sink, cut the lights off, close my eyes, swallow the room temp can as fast as I could and then pray it stayed down which it did more often than not.


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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Thank you all for your advise.We keep trying different things.
He is trying to do it without the tube. . . . .
The problem isn't swallowing or being hungry, he is doing ok there and he is @ 24 treatments of 33 It's that whatever goes in, comes right back out. Any other suggestions? Need to keep the food in!!
Hope you all have a happy new year!
Thank you again!

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Anti nausea meds like zofran should help. When nausea sets in its next to impossible to get ahead of it. Keep giving the meds even when you think the nausea has passed. Right now is when the worst of it begins so work even harder to keep the high calories and hydration. This will play a key role in how your BF feels. Soon it will be over and things will slowly return to normal. Best wishes!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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I haven't piped in - I don't think.. I know the break through meds aren't helping much frankly it sounds like nothing is) I was okay with chemo, rads was hard. Though I did have bouts of nausea mostly related to my tube, so I stopped using it after two tries and bit the bullet.. Maybe try getting him to take his meds about 15 minutes prior to eating, have him down a bottle of ensure and either sit up, or lay on his right side to help drain his stomach a little more quickly. I found position made things a little better laying on your left side makes it harder to drain your stomach. Ensure is fast, if you get the one with extra calories it has almost as much protein as the protein plus ensure has! I survived on four to 5 a day, and learned to chug them in 13 gulps!! They are bland - texture free and shouldn't trigger too much gagging (I found the thng that was worse was gagging on my own spit. I kept a cloth nearby, to spit into, and a glass - gross I know - I also rinsed frequently on the lowest setting with a water pick and a dab of all natural, alcohol free mouthwash - it made everything feel less gross and cleans out the secretions.... it dependeds on what is setting off the nausea.

However I also know someone who was sick from beginning to end! He said he lost 50 lbs, and spent all his time throwing up - he's great today!! It all ends!! if you find the ensure helps and does stay down, the try buying some protein powder, and adding say. 1/4 of a scoop per bottle of ensure. Would add one scoop to one ensure a day - and found it really helped with healing. One scoop affects the thickness though - so breaking it down might make it easier for him. Good luck!, sorry he's feeling so crappy! Take care!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Thank you Christine
He is on zofran and compazine. They keep the naseau at bay, but as soon as he puts something in it comes right back. frown
Poor guy is getting pretty down. It's hard to keep him positive right now. I don't know how to keep things in him or what to do to help. Feel so powerless. And of course it's a holiday weekend so he won't see the doc till Tuesday. I hate seeing him go thru this.

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Personally I'm a fan of marijuana (vaporized not smoked) for nausea and increasing appetite. If it's legal in your state then ask your Dr about it, if it's not it doesn't have any drug interactions so talk to your hippie or stoner buddies and score a bag. It'll help with the depression, pain, anxiety and increase appetite. No matter what your notions are of marijuana many on these forums have used it successfully during treatment to help cope with side effects of other drugs and keep moods lifted. A few hits from the vaporizer, a bag of jevity and Pineapple Express on DVD should be enough to get him in a good mood, if not I recommend doubling the doses of mj, jevity and switching any Cheech & Chong or Harold & Kumar movie for P/E smile

Keep your chin up!

Eric

Last edited by EricS; 01-01-2012 03:00 PM.

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.
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Add to Eric's post....don't let your docs prescribe Marinol, supposedly a MJ substitute, as it just plain DOES NOT WORK and it's very expensive. I know from experience! I smoked my share of MJ in my college years so I know what MJ can do and those pills didn't mimic MJ in the least for me. Looking back I wish I had tried the real stuff.


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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Okay, due to legal issues, let me say that I know a "friend" who can can vouch from personal experience for the recommendations from Cheryl, Eric & David. This "friend" got thru the first time without a feeding tube due to Ensure Plus and MJ (vaporized). None of medications worked well for the nausea and usually "he" threw those pills up. Using the MJ for this medical purpose worked exceedingly well in that it not only made the Ensure Plus palatable but "he" was able to keep it down. There is a very good reason why every State that has medical marijuana specifically lists Cancer as a qualifying condition. NORML has an excellent web page debunking Marinol Marinol vs Natural
Plus "he" was able to keep "his" prescription opiate use way down. Okay legal hypocrisy parenthetical done.

One more thing I found helpful was to gargle and swish with cans of Seltzer water: it dissolved that damn mucous so I could spit it out and not choke. Just the mucous dripping down your throat is often enough to trigger a vomiting reflex.
I found the large bottles did not keep enough fizz so I bought the individual cans in six packs - just generic Safeway or any non brand name will work.

It's very tough and your post brings back bad memories but it does end.
Charm

Last edited by Charm2017; 01-02-2012 05:51 PM. Reason: added parenthicals

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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Yes -soda water was awesome, you can swish and spit, and or swallow the flat stuff - it heals!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Christine,
I tried Zophran, Zuphrine, Compazine, and Phenergan. No help. I finally started using ativan every four hours followed by Marinol. I would let the ativan disolve in my mouth (so I wouldn't throw it up) then wait 30 minutes and take the marinol. That combo allowed me to stop vomiting for an hour to an hour and a half.
Angie


51 y/o Stage 4 HPV Tonsil Cancer IMRT & Cisplatin. Completed 9/26/2011.
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Man, I'm so sorry to read about the continuing nausea. There's practically nothing worse. And it seems you've tried nearly everything. The MJ is another good idea if you can get it.

I in fact had a different experience with Marinol than DavidCPA's: it helped me and was easy to take, so I didn't need to get a vaporizer, etc. (although living in LA I could have and still could get an MJ license if I wanted one, which I don't)

Good luck!


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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