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Elianne Offline OP
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Hi,
Well, here we are after 11 radiation and 1 chemo treatments.
All of a sudden, Gordon has developed a very sore tongue, as well
as a sore mouth.

Unfortunately he has just had the stomach flu for a couple of days and this threw everything off track.

His RO prescribed a mouthwash that contains Solu-Cortef 100 MGM/Benadryl/Nystatin ML MCD. He's supposed to swish and swallow, then not eat anything for 1/2 hr. It's not clear if he's supposed to do this 1/2 hr. prior to eating or not. It doesn't look to me like there is a painkiller in
this mixture, but I'm not sure. He says it tastes vile and hurts going down.

We're having a really bad time with feeding - Boost/Glucerna, non-sugar ice cream and puddings seem to give him the runs, although he's having a lot more dairy so that may be the culprit.

We tried tuna salad with avocado tonight, but he couldn't tolerate the avocado (said it made his tongue sting like crazy). He had chicken noodle soup with an egg in it and ate the tuna.

If it's like this now, I hate to think what it will be like a couple of weeks
from now.

If anyone has any advice on how to handle this, that would be great.
I figure all I can do is call the clinic tomorrow and let them know what's
going on. I feel so sorry for him and don't know what to do to help.
I'm trying everything I can think of, food-wise, but am kind of at a loss
(he's also pre-diabetic).

Thanks, Anne

frown

Last edited by Elianne; 03-18-2010 08:48 PM. Reason: Wrong smiley!

Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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Anne,

I hate to say this but from here on out eating becomes more like a job then a pleasure frown. It is a game of what is tolerated and what is not, as you are finding out. You will find that he will be moving toward softer foods (pasta) and more bland foods.

I did not get a PEG and eventually was down to scrambled eggs, pate’ pancakes and the like and even spent the two weeks after treatment on liquids only (Boost, Carnation VHC etc…) Eating was painful.

As he moves the other way after treatment, the whole process reverses itself and more and more things become edible and then even pleasurable to eat again grin.

The one consistent thing you will find among all oral cancer patients is the eating issue. This is a great place to come for eating suggestions and you will get a ton of responses.

Did Gordon get the PEH tube?


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
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Posts: 126
Elianne Offline OP
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Hi Kelly,
No, he doesn't have the tube yet.
My main concern is that I can't get the high calorie/protein stuff
like Boost, ice-cream, pudding into him. It all seems to be too
rich for him and gives him the runs. This leads to weight loss,
dehydration and another step towards the tube. It's not his fault,
it's just the way his digestive system is. And being pre-diabetic
complicates things somewhat.

His ability to tolerate anything that isn't soft is nil. And some things you'd think
would work, like canned pears and avocados seem to hurt
his tongue.

I guess it's trial and error all the way, and I just hoped it wouldn't get this bad for him so soon. I will keep looking for suggestions - this is a great board and
everyone is so helpful and nice.

Thanks so much for your comments.
Anne


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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Have you considered that he might be lactose intolerant? I thought I was allergic to Diary and I was told in the hospital I was just Lactose Intelerant. For the first time in many years I just take a tablet, there are several brands, and no problem!
You can also get drops. Apparently it replaces the enzyme many of us are missing to break down the protien in Dairy products. I have doing this since January and I can eat even pizza and milkshakes anything. It is the best thing to have come out of this.


55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer
1/18/10 Clr PET
1/27/10 Surgery found Perineural invasion
3/22/10 Began Rad
05/05/10 34 rads
8/19/10 Clr Pet Scan
12/13/10 Clr Ultra sound/biopsy
5/4/11 MRI Clear
8/2/11 All Clear
5/25/12 All Clear
6/3/2016 All Clear
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Elianne Offline OP
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Hi Soda Bug,
WHat is the name of the tablet you take for your dairy allergy?
Gordon eats a lot of yogurt, and that doesn't seem to bother him.
In fact, he's fine with collage cheese and yogurt. But it wouldn't
hurt to have this medication on hand, just in case.
Many thanks,
Anne


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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Anne, Have you tried the Carnation 560? Dave didn't like the Ensure stuff and I don't think he would be the PR person for Carnation but he does tolerate it pretty well.
We couldn't find it locally but were able to order it online.

He also (through someone's recommendation here) is using Juveun(sp?) and that seems to sooth his mouth before he tries to eat.

This is from the sore he has BEFORE treatment so I can't even imagine what it will be like at the stage you are at!!!


CG to Spouse BOT, Chemo and radiation started on March 29,2010
Ended on May 14,2010. LET THE HEALING BEGIN!!!
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I don't think the brand matters so much as the when you take it.
You HAVE to either put the drops on the food or chew the tablet with the VERY First mouthful. With Milk shakes I actually chew a second one. As to yogurt and Cottage Cheese I could/can eat those without the Enzyme added. They are processed enough that the diary protein is not a problem. I can also eat Kefer which is sort of a liquid yogurt without adding the enzyme. The brand I purchased first is Lactoad Fast Act. I will be getting the drops since the tablets will become a problem as I move through Radiation. Most of the Ensure or other "drinks" can be purchased Lactose Free.


55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer
1/18/10 Clr PET
1/27/10 Surgery found Perineural invasion
3/22/10 Began Rad
05/05/10 34 rads
8/19/10 Clr Pet Scan
12/13/10 Clr Ultra sound/biopsy
5/4/11 MRI Clear
8/2/11 All Clear
5/25/12 All Clear
6/3/2016 All Clear
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Elianne Offline OP
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Thanks - probably the pharmacist will be able to make some suggestions,
but we could try Lactaid Fast Act if we can find it.
The other alternative would be to buy milk that's lactose-free.
Anne


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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Anne,

Hotdogs are an amazingly soft protein. Macaroni & Cheese, and all the frozen dishes you can find (processed food is softer). Salisbury steak worked for a while. Fruit went out the window fairly early on (too acidic).

I did not try and eat fabulously healthy food at your point. I just tried everything I could find at the grocery store that looked like I could tolerate. I still have stuff I will never eat. My wife and I went shopping together; we made it kind of an adventure in eating.

The Chinese place up the street had some good stuff also, beef and broccoli was nice for a while. I started giving the beef to my son and just had the rice, soft broccoli and sauce when chewing hurt.

When I started the pain meds (about 5 weeks in) the constipation started, so you may not have too much longer with the runs.

Just try everything and get ready to hunker down with a man who will have little taste for a while.

I’m 5 months out and can taste and eat almost everything I used too have so keep the faith.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
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If you make him any pasta, overcook it by 20 minutes, That's what I have to do as it hangs up in your mouth. Poached eggs and very fresh brad butterd heavy with the eggs broken over them or pancakes instead of bread , butter heavy there too. I use I can't Believe it's not butter and it has the same flavor. Cream of whaet works fine as does oatmeal. Hurts the tongue like hell as it all does, but he will get used to it. There are many things you can feed him.. Experiment. LOL I sure thro a lot of food away.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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Elianne Offline OP
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Thanks for all the ideas, everyone, and I will keep all of them in mind,
as we search for tolerable food.
We have been back to the clinic and now have lidocaine (swish and
spit) and tylenol 3 with codeine. And this is only 2 weeks in!
His tongue is extremely sore, as is back of throat and inside of cheeks;
Also sore gums.
We have jumped from eating pretty much anything to soft foods like
soup and scrambled eggs. Luckily he's been eating oatmeal for about
6 months and likes it. I've been pureeing blueberries in about 4 Tb
of milk with some whey protein powder to add to the oatmeal.
I'm going to try the enzyme drops for the possible lactose problem,
but as you say, with the codeine he may not have to worry about the runs
much longer.
He tends to suffer from depression anyway and says he doesn't know how he's going to get through this when the pain is so bad now.
I'm trying to be encouraging and doing the "one day at a time" routine. It's so easy for me (or anyone) to say when I'm not feeling his physical pain.
Anne


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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I am not sure that Lactose intolerance is a good solution for constipation. The process includes gas, bloating, cramping and diaherra. Because of all the irritation it resulted in 2 divertitulosus attacks before I got it figured out. One came close to putting me in hospital.



55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer
1/18/10 Clr PET
1/27/10 Surgery found Perineural invasion
3/22/10 Began Rad
05/05/10 34 rads
8/19/10 Clr Pet Scan
12/13/10 Clr Ultra sound/biopsy
5/4/11 MRI Clear
8/2/11 All Clear
5/25/12 All Clear
6/3/2016 All Clear
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Elaine...
Here is a list I created a long time ago of soft, easy foods.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621


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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Elianne Offline OP
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Unfortunately, we're now in a position where he can barely swallow water.
Most of the soft foods will probably not work.
I'm hoping the lidocaine and T3 with codeine will help.
Anne


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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Elianne Offline OP
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I agree, there's more to intolerance than just the runs.
If milk is the prime culprit, I'm going to switch him over
to lactose-free milk and see if that helps.
Anne


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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Elaine

Do you know how many calories your husband is taking in daily? If he isnt taking in 2000 calories daily, he will feel lousy. Right now he should be shooting for a minimum of 2000 calories daily with 3000+ even better. I was hospitalized for malnutrition/dehydration while going thru tx. Please talk to the doc about getting a PEG tube for him right away.

Sounds like the diarhea may be coming from the liquid nutrition. Try giving him a different kind for 2 days and see if he feels any different. I know first hand how those formulas can mess up your digestive system.

Take it day by day. Hope today was a good day.


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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Get a PEG tube. I would also ask for a fentanyl pain patch if the pain is too bad. I am 6 weeks out of treatment and still use them.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
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You have to force the swallowing. After all of this time, if I didn't force swallow, I would be a waste. Sure it hurts a=everything past the lips but it is what has to be done. I know for sure this hurts but it keeps you alive and beats just thinking about pain so much.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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Elianne Offline OP
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As to the lactose problem and ice-cream, we have discovered a product that is not only "no-sugar added", but lactose-free as well. It seems to be available in vanilla and chocolate (at least, that's all we've found so far). The brand is Chapman's and I think it's produced back east in Canada. Not sure if it's available in the U.S. or not.
Anne


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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Haven't read this thread recently but Carnation IB VHC is also lactose free.


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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I agree with the fentanyl pain patch suggestion. They told me about 10 days ago to put one on and use them until this is over. Almost instantly I went from being barely able to eat to eating most anything I want. I am now 10% finished with radiation and the side effects have not started. I will not live with that much pain again. They will increase the strengh as needed and then I have additional meds for breakthrough pain.


55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer
1/18/10 Clr PET
1/27/10 Surgery found Perineural invasion
3/22/10 Began Rad
05/05/10 34 rads
8/19/10 Clr Pet Scan
12/13/10 Clr Ultra sound/biopsy
5/4/11 MRI Clear
8/2/11 All Clear
5/25/12 All Clear
6/3/2016 All Clear
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Elianne Offline OP
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Hi Seda Bug,
We will keep the fentanyl patch in mind. Right now, Gordon is still
eating soft food and keeping pain under control with extra-strench
Tylenol. We have the codeine on the back burner until we need it.
He is now 1/2 way through his radiation and has had 2 out of 3
chemos.
He wondered if there are any side effects from the patch that you've
noticed, ie. constipation etc.?
Thanks, Anne


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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Because I was warned about the constipation I started using Benefiber and so far no problems. I don't know any side effects. I have only had one week of treatments so not too many side effects yet. But then I wonder if maybe the patch is taking care of any pain that might be there.
Also, I believe that Tylenol taken too much or too often can be very hard on the liver but of course you might want to check with his Doctors about that.


55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer
1/18/10 Clr PET
1/27/10 Surgery found Perineural invasion
3/22/10 Began Rad
05/05/10 34 rads
8/19/10 Clr Pet Scan
12/13/10 Clr Ultra sound/biopsy
5/4/11 MRI Clear
8/2/11 All Clear
5/25/12 All Clear
6/3/2016 All Clear
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Anne, I was on a Fentanyl patch for about the last 2 weeks of my RT. I was also chugging 12-16 Percocets a day (that is, Oxycodone for most of the time - that's Percocet minus the Tylenol). I always had constipation issues and they reached their sublime level of agony about a week or two after I'd finished treatment and had gotten rid of the patches, but was still on the Oxys. So perhaps it was the patch that sent me over the top. Still, if you need it, you need it! Hate to be so graphic but rubber gloves were the only thing that helped me eventually.

It's tough, and will get tougher... but you'll both get through this. Your husband is lucky to have such a devoted wife!

David Dos


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 10 years all clear in 6/19 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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Elianne Offline OP
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David2,
Gordon is now on the Fentanyl patch - just put the first one on today. They seem to start you on 25 mcg. and tell you to put on a 2nd patch after 24 hrs. if the first one isn't working too well. Apparently he's supposed to keep taking the T3s every 4 hrs. until the Fentanyl kicks in. Then he can continue the T3 three times a day for breakthrough pain as needed. I hope it's going to be enough to get us through the 4 day long week-end.

If you were chugging 12-16 oxys. a day, the patch must not have been nearly enough for you. Wonder why they didn't up the patch dosage - or did they? I guess there is a limit on how much they can give you. How many mcgs. did you end up taking?

G. has always had sort of the opposite of constipation, but I know all about the rubber glove routine, as he ended up in emergency with a severe case of it (constipation, that is) from the drugs after he had a hernia operation about 15 years ago. The poor e-room Dr. had to dig it out with the rubber glove. I don't know who I felt more sorry for, G. or the Dr.

G. has an internal hemorrhoid that's giving him hell, so constipation is the last thing we need. We have 14 rads. and 1 chemo to go...

Doesn't sound like they gave you anything that worked for the constipation, which is awful, really. Talk about adding injury to injury!


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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Elianne Offline OP
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Seda Bug,
How many mcgs. of the Fentanyl patch were you using?
As far as fiber goes, (referring to your next post), because of the chemo,
they tell you not to use metamucil or any similar product as it can cause a hard wad of stuff in your intestine that can't move through. Apparently the chemo causes motility to slow right down and if you get dehydrated that can exacerbate the problem. They seem to prefer Senokot and Colace. at our clinic and have a protocol for that.
There is a limit for acetaminophen - I think it's 4,000 mg./day. Anything more than that is bad for the liver apparently.
Anne


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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Only 25 mg on Fentanyl. Other than when I am trying to go to sleep and there are no distractions then twice I have taken 1/2 a dose of the Hydrocodone. I have not taken any other pain meds over the counter or script.

I am not having Chemo just Radiation. I did meet with the Nurse Oncologist on Tues and she had told me to use a brand called Miralax. She said as long as this works go with it. I am drinking a lot of everything decaf peach tea, juice, water and ensure.

Finished #10 today and other than some swelling in my lips I am in good shape. Yesterday the mask pinched my lip so bad I though I was going to scream. But they adjusted it today and it was Way better.



55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer
1/18/10 Clr PET
1/27/10 Surgery found Perineural invasion
3/22/10 Began Rad
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Thanks Seda Bug.
I just had one other question - how long did it take for the Fentanyl to kick in the first time you put on a patch? We were told 24 hrs. and are anxiously awaiting 3:30 this afternoon for some improvement. If there isn't any, we can use a 2nd patch.

Radiation is bad enough, but adding chemo to the mix increases the mouth sores and pain. The Dr. we saw yesterday referred to the treatment as "barbaric", a word my husband has used more than once, and I'd have to agree from what I've seen so far.

I hope you continue to be in good shape and have good pain control - that seems
to be key.

Thanks to everyone who has responded - you are all so helpful. Anne


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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The first time I used the patch it was when I came home from the hospital. I didn't think it ever worked. But this time I used it going in and while I can feel the ulcers forming I am in very little pain. I really think the key is to not let the pain get bad because it seems to take WAY more pain meds to stop it than
just staying on top of it. In fact they told me that if I decided I was doing good not to take the patch off that I would regret it. Knowing what I know now if that patch has not helped put the other one on now or use the break through meds. I had a VERY hard time getting the use of the pain meds through my head because of a family member who has been addicted to pain meds for most of her adult life. But they swear that when you use them as prescibed and for pain there rarely if ever see a cancer paient become addicted. I am sure there are others here that could speak better to that. But I refuse to go through
weeks of non stop pain,this is hard enough as it is.


55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer
1/18/10 Clr PET
1/27/10 Surgery found Perineural invasion
3/22/10 Began Rad
05/05/10 34 rads
8/19/10 Clr Pet Scan
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Thanks Seda Bug.
We didn't think the patch was going to work either. After having it on for 24 hrs., and taking a T3 at 2:00, Gordon was getting breakthrough pain at 5:00. We put the 2nd patch on and I went to pick up the morphine presc. from the pharmacy.

However, by the time I got back, the pain had eased off and he hasn't had to use the morphine so far (9:27). Maybe we just needed to wait it out for a few hours more. Now I'm not sure if we needed to put on the extra patch, but he couldn't go through that level of pain again. He's pretty woozy and has gone to bed.

It is hard to understand how pain meds. work when you're new to the whole thing. We tended to think that first you have pain, *then* you take the medication. But now we understand that regular doses of the appropriate pain meds. prevent things from escalating out of control. We've had the same problem that you did - worrying about addiction.

The clinic gave us a hand-out that tries to dispel the various myths about taking narcotic pain-relieving drugs, including:
- if you're given morphine, it means you're dying.
- if you take narcotics to soon, there won't be anything else when the pain gets worse.
- side effects from pain meds. are worse than the pain (um, I don't think so!)
- asking for pain meds. makes the medical professionals think you are weak.
- pain meds. cause addiction.
- cancer will always cause a lot of pain.
etc.
Nobody should have to go through weeks of non-stop pain. After observing the effects at close hand now, I can see how this kind of pain devastates the spirit and makes it really difficult to cope with anything.
Anne


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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So much to comment on here... mainly though to answer your question, Anne, I was only on the 25 mcg Fentanyl and the Oxys. A lot of those last couple of weeks is kind of a haze to me right now, but I guess that combo was enough to handle things. I'm sure if I'd needed more my doc would have accomodated me; she's terrific and believes, rightly, that there's no reason to be in pain. That sounds like a sensible handout you were given!

As for the constipation, they did suggest stool softeners and suppositories and the like, but in the end (pun intended) the manual approach was the only real solution. Oh well.

Seda, early on I found that my nose was getting squashed by the damn mask. So the tech kindly cut out a hole for it. If a simple adjustment makes yours tolerable, that's great.

Hope things are improving for your husband, Anne, and for you, Seda!

D too



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 10 years all clear in 6/19 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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Thanks David2, we are getting there. Almost at the end of week 5 and he's still getting 4 shakes down every day.

Did anyone ever suggest lactulose for you? It seems to be the next step up after senokot and colace. We're giving it a try. Every doctor seems to have their own favourite method. smile

Gordon is now on the Fentanyl 50 patches and morphine (10 mg) 1X/hr. or as needed. It seems to be helping.

Anne



Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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I have been taking one or the other or both sometimes of percosets, vicadin, morphine 30 and oxycodone 5mgs sine June 09. I define the pain I have as existing in layers where one pain fades away it reveals another. Also with experiences like bone exposing biopsies, radiation ulcers, and pain from surgeries it seems like there is always some pain. I tell doctors I have been in continuous pain since June, and I insist on painmanagement / paliative care verses depending on doctors for pain analysis over time. Pain has a big psychological component that doctors may not get. Anyway, my point is that I am in a place where much of my pain is subsiding and when I go for periods of not taking prescribed pain meds I do not feel like I am experiencing any major or minor withdrawal symptoms.


Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10
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Nibs, I hear you. Glad to read that the pain is subsiding. Man, it's a bitch ain't it?

Anne, never heard of lactulose. Wish I had back then! Great that Gordon's getting what he needs! And that it's doing the trick.

By my counting he should be nearly finished with radiation. That will be a major milestone! Please keep us posted on his progress.

D2


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 10 years all clear in 6/19 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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David2, Lactulose is the next laxative step up from the senokot/colace regimen. It seems to work fairly well. I'd never heard of it either before the MO suggested it.
Gordon has had his 3rd and last chemo. today. After tomorrow, five more radiation treatments to go. He'll be finished on Apr. 23. I can't believe we're nearly there. Pain is on the increase and so is the morphine. He now needs to take 10 mg. every 2 1/2 hrs. and is wearing the 75 mcg. Fentanyl patch. Amazingly, he hasn't lost any weight so far (of course, if you were eating 8 scoops of ice-cream per day, you wouldn't lose any either!). Then we have to wait to see if this is a cure...I'm hoping but can't help but wonder what will happen next if it isn't. Trying hard not to let my mind go there. Thanks so much for your concern and support.
Anne



Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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Anne, so glad to read that the light at the end of the tunnel is in view. Remember that the first weeks after the end of RT will be just as bad as what went before. For me they were even worse. I don't say this to scare you but to prepare you. And of course take it with a grain of salt because we're all different. It sounds to me as though you both have the right attitude!

But then it'll be Over. Capital O.

As for wondering what's next... that's normal and we all do it. I went into treatment with the sure knowledge that this thing wouldn't kill me. I trusted my doctors and myself, and I was right.

Reading all your posts I feel exactly the same way about Gordon. Keep us posted.

Courage!

D the 2nd


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 10 years all clear in 6/19 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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I was hoping things would start to improve right after the last treatment, but that seems to be very unrealistic from everything I've heard, both here and at the clinic. Poor Gordon is so bombed on morphine (he saw two tuxedo cats walk by his bed in the hospital earlier today) and is starting to experience a bit of difficulty in swallowing. We may end up with that PEG yet. The dietition I spoke to today works somewhere else as well as at our clinic and said that at her other job, they put the PEG in as a matter of course, whether the person needs it at that point or not. Makes it a lot easier if swallowing suddenly becomes an issue. How did you keep going during the last weeks of treatment and first couple of weeks after without the PEG?
Gordon's not a terribly positive person, and isn't too upbeat about the outcome. I tend to get carried away by my fear and let it dominate me. It's hard to beat it back into submission, but I try. Anne


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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Anne, I am sorry to read of how your husband is struggling. Ask the docs about his pain meds, maybe upping the patch and decreasing the morphine. I had started with 25mg fentyanl and ended with 150mg. The 150mg patch was around for about 2 or 3 weeks, right at the end of my treatments. With the patch, i rarely had to use anything else besides the magic mouthwash.

Maybe a PEG tube would be a good idea. there is also a nasal tube which is more temporary.

The last 2 weeks can be really bad. It stays bad for about 2 weeks after treatment ends. Then it slowly gets better. About a month after treatments are finished he should really feel alot better, and keep improving bit by bit. A few steps forward and sometimes a few backward.

Hang in there, its almost over.


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
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Gordon was "upped" to the 75 mcg. fentanyl patch yesterday and still taking 10 mg. of morphine every 3 hrs. now. He was just discharged this afternoon from his 3rd and last chemo. He's been so out of it, some hallucinations (but he knows that's what they are, so he's not psychotic). The worst thing was late this afternoon and evening: it took forever to get 2 glasses of water and 1/2 of his "shake" down, with a lot of coughing, choking, drifting off into La La land and almost ending up with the straw up his nose or ear, even with me watching. When things get worse, they seem to do so suddenly, with very little advance warning.
I ended up calling the clinic and spoke to the on-call oncologist who said her medical advice was to bring him in. So we had to go back up and have him readmitted at about 10:00 tonight. I feel like I've let him down and can't help but wonder if it's just me that can't cope. ChristineB, when I see what you've been through, I feel like a whiner. Thanks so much for your support.


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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The trick is to get the most calories down for each swallow. I lived on Ensure Plus which is about 360 but the carnation VHC which David found is 500+. If you are making shakes, it can be a lot more. I think there are couple of recipes on the board that are well over a 1000 calories per shake. I had no peg tube when I had radiation but did have a nasal tube after the laryngectomy for 8 days. If it is just for a couple of weeks, you might try that. Not pretty but it works and who is going dancing anyway.

Take care,
Eileen


----------------------
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mets to 1 lymph node in neck; rt ND, 36 XRT rad
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Anne, please dont doubt yourself or put yourself down. A caregiver has a very difficult job trying to keep up with everything. Your husband is very fortunate to have you looking out for him. Im sorry to see he is now back in the hospital. At least he came home for a little bit. You are doing a great job. You were able to recognize that your husband needed more help than you could give him and made the call to the on-call oncologist. Dont call yourself a whiner or compare anything to me, Im just a medical enigma thats all smile LOL

Now is the point where we all wished we could have fast forwarded thru til a month post treatment. Im so sorry that your husband is struggling so much. Its a rough road but things will get better.

Be strong, you are doing great!!!!


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
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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
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OC 3x in 3 years
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Amen to that one.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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At this point I would definitely consider the nasal tube WAY BEFORE a PEG. Also sounds like he is on way too much pain meds or the combo is wrong. Getting rid of the pain is one thing but making him that loopy is quite another. IMO


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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Anne, I second Christine's assessment. You're in a very difficult place and, whether he's able to express it or not, I have no doubt that Gordon depends on you like no one else. Hang in there because things will improve eventually.

I have no experience with hallucinations. I can't imagine it's pleasant. My dad had them years ago after bypass surgery and saw little animals crawling all over the walls of his hospital room. Or maybe it was just a lousy hospital!

Not sure how I really made it through without the PEG. I know others have done so too. It was very tough, I can tell you that. If I had it to do over again I'd get the PEG for sure... although at the time I'd just had a possibly bad reaction to anesthesia during my neck dissection so I was wary of going under again. Oh well.

Davidcpa is, as usual, smart and informative on these issues. I may joke about my dad's visions, because we all need some lightness, but he may well be right about Gordon's meds. Worth asking about.

Hang in there, don't beat yourself up (sounds as if you did exactly the right thing calling the oncologist) and remember that your lifeline here is open at all times.

D2


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 10 years all clear in 6/19 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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Just to let you know that Gordon finished all the radiation and chemo. on Apr.
23 (same day my mom, age 91, was taken into emergency with a partial intestinal obstruction, but that's another story...)
The loopiness pretty much stopped when the doctors got him off the morphine/hydromorphone (the nurse and I got to watch him doing his "air guitar" routine when he was really out of it - something no other person has ever witnessed, apparently). He's been on oxycodone and still on the fentanyl patch (75 mcg). The oxy. makes him groggy, drowsy and a little confused, but at least he's not seeing things. Pain control isn't great, but he's getting by. The next step would be methadone, which he doesn't want to take. The 2 weeks after treatment have been hell. I think he feels worse this week than last week. They keep telling us it's going to get better, but when? We both long for relief.
Anne

Last edited by Elianne; 05-07-2010 10:31 PM.

Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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I remember those two weeks vividly. I guess its like stopping a train or turning a ship at sea. The effects of the radiation have a certain amount of momentum and don’t start to diminish for a few weeks. I too felt those two weeks where the worst. Painkillers sleep and liquid food; that was my existence.

The good news is that your two weeks are over and you should notice a gradual change. Mind you, its not much at first, but it should get better soon.


Kelly
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Thanks for the encouragement Kelly.
Gordon is fed up, discouraged, depressed, constipated and thinks he's never going to feel better. I have to admit I'm wondering myself. On top of that he's frightened that after all this, the treatment won't have worked and then what? He's in a slump and feels terrible. If he could just see a little bit of improvement it would really help.
Anne


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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I sure remember the pink elephants I saw outside my Hospital room and so do my kids and grandkids. Supposedly there was a large hill outside my window that the elephants roamed on. I guess I really did act and see weird things. Elianne You have one tough job to do for your hubby and I admire you very much.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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Anne,

I remember that my husband felt the same way upon completion, too. It was so tough seeing him in a deep funk. I really needed a break, even for an hour where I could just get away. I always returned feeling more fortified and more able to deal with his discomfort. The pain meds are a double-edged sword--the side effects are so uncomfortable. I would say to Clark that the good news was that he never had to repeat this day, that tomorrow would be different, and each day he was closer to being well again. We used to go out for a drive just to get him outside a little, change the scenery. That seemed to brighten him a little. Then when we got back home he would conk out for a few hours. You have one of the hardest jobs right now. It is heart breaking to see our loved one this low. Keep posting to help lighten your load.

All my best--
Anita


Anita (67)
CG to husband, Clark, 78,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
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Thanks Anita. It's so hard for them and you feel like you're sinking into their pit of misery, which doesn't help anyone. You are right - it's necessary to take a break to get your own head straightened around. Luckily we live by a very nice seawall walk and we can get out every day, as it's at our back door. Also, important to get out with a friend and talk about something else for an hour once and awhile. This is a tough job, the toughest I've ever had. It changes you and your partner, and things will never be the same again. But I think you still have a choice about which direction your life will take after it's all over. Maybe appreciate a lot of thing you used to take for granted. Anne


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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