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#79763 09-01-2008 05:37 PM
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Kendall Offline OP
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Hi,

I am new here - just registered today. My husband completed his cancer therapy 7/31/08. I am starting to get a little concerned with the rate of his recovery and am wondering if I am expecting too much too soon?

David had a terrible time with gagging/vomiting during his treatment whether he took in nutrition orally or through his PEG. Consequently, he lost 45 pounds. We have talked to two nutritionists about what his caloric and hydration levels need to be for recovery, but he refuses to do more than the bare minimum because he thinks he will vomit. He won't even put any water into his feeding tube to help with hydration. Because of this he is very weak. He won't try any 'solid' foods, either. He sleeps 21-22 hours a day. He only wakes up to take meds and drink Boost and take a short walk around the neighborhood with me in the afternoon. He can't concentrate enough to read, but has been actually watching parts of tv movies the last day or two.

One of his oncologists did put him on an anti-dreppresant last week, but did say that most people are farther along in their recovery process than he is. I realize he has a long road to hoe, but I am starting to get concerned that he has lost his will to recover. Am I just too close to the situation to have a clear picture? It just seems like he is not even trying the things that both oncologists, dieticians and nurses have told him he needs to do to recover.

Thanks for any insight,
Kendall

Last edited by Kendall; 09-01-2008 05:39 PM. Reason: sp

Wife and caregiver to David, diagnosed with squamous cell cancer/Stage 4 5/08. Primary on left tonsil stub, spread to left neck lymph nodes. 38 IMRT/3 cisplatin completed on 7/31/08.
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Can I say that the boost made me nauseous but I am one that can't vomit. Get him some carnation VHC. It has 560 calories in each can. I took it until my Ins quit paying for it. I lost 70 lbs and if I am lucky, I might have put 6 or 7 back on. Your hubby doesn't want to get dehydrated. I been there too and had to get fluids intraveously until I got some enery and strength back. Tell him I said to behave and get some food of some type in that body and some water to wash it down.


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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Oh, Kendall, I bet you're concerned! He's going to have trouble recovering if he's malnourished and dehydrated. Instead of water, have you tried Gatorade or even chicken or vegetable broths? I find straight water a little tougher to take than other liquids sometimes. Also, as Jim suggested, the Carnation VHC is great stuff with tons of calories.

Are there any support groups around you? Or other patients he can talk to? Maybe he needs some reassurance that he can recover. Perhaps his doctors can recommend a therapist to help him (and you!) out, if he'll go.

Good luck, this has got to be a tough time for both of you.




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
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I finished on 7/31 as well! I spent a few weeks feeling pretty tired (long naps every day after sleeping 10 + hours at night). I found that getting up and doing things, like going to physical therapy, or eventually I started going out shopping, really helped me start feeling better. Right after my treatment ended, for about 2 weeks, I would sit and watch tv for most of the day, and I had zero energy, but once I started making myself be more active (like taking the dogs out for walks) I started feeling much better. Maybe start getting your husband to start taking a short walk every day with you in the evenings or something to that effect once you get the hydration and feeding under control. I definitely think becoming more active has helped me recover faster.

OH! And I couldn't concentrate on reading books after my surgery and during treatment. I STILL can't read more than a chapter or two at a time, I have the attention span of a two year old now. It is getting better, so there is hope!


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


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Just wondering if an "upper gastric motility" class of drug has been tried. Also not to lie down for 30 min to 1 hour after eating or drinking and when tube feeding is given should have upper body elevated at least 30 degrees. These things helped my husband with the nausea related to nutritional intake.
As far as activity goes I think he is on the right track if you can get him to walk a little each day with the goal to increasing the activity each week. Plan any activity with rest periods between. The generalized fatigue can last for quite a long time, up to a year post treatment, so small steps forward are to be appreciated. I think during treatment we are so focused on getting through that phase and are so anxious to be feeling better but do not realize what a slow process it can be. It is not a quick recovery as from surgery. Radiation and chemotherapy are a major assault on the body and require a prolonged recovery period with each person responding differently. All that being said, keep encouraging him, but don't beat yourself up when he doesn't respond to your expectations. No doubt he feels like crap right now but very slowly good days should start to out number the bad. When the anti-depressant kicks in (can take 3-4 weeks) they will also help.
Strength and courage to you both to face the days ahead. We are all here to support you, so visit and vent as often as you need to.


Caregiver to husband Dx. Stage 4 SCC of gingiva with 3 nodes pos. Partial mandiblectomy with bone graft from iliac crest Dec. 2006. IMRT x30, Cisplatin x3. Completed Tx. March 15, 2007. Osteonecrosis & removal of graft & plate Oct. 2007. Recurrence of SCC Dec. 2007. Deceased Jan. 17, 2008.
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Kendall:

Does your husband have a feeding machine? What method is being used for his feedings? If he doesnt have a machine, ask for one, it will make a huge difference. You can set it and he can do the majority of his feedings overnight while he is sleeping. You can throw in some extra water which will help him with the formula. I suffered so much with several kinds of formulas and couldnt tolerate the gravity method or pushing the formula thru the syringe. The only way I could get my nutrition was the pump which I did overnight. If your husband can take some anti-nasuea meds before his feeding it will be easier. He would feel so much better if his calorie intake was high right now, 3000 calories isnt too much at this point.

One thing you said was positive, that he gets out for walks. Thats really good. Fatigue can be terrible, some days even just getting up to take a shower can wipe out a person's energy. Everyone heals at their own pace and it can take months, not just a few weeks to feel somewhat normal. I went thru sleeping 20 hours a day for a few weeks. It is a gradual process to heal after going thru treatments. Dont let the doctors comment about him not making progress like others worry you too much at this point. Does this doctor deal with many oral cancer patients? Oral cancer is one of the hardest ones to recover from.

As a patient, I know how hard it is to go thru treatments. Once they are over, it was time to rest. Im sure your husband is trying, he just feels lousy right now. Hopefully he will feel better soon.


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 have heard many times 1.5 yrs is an average for feeling back to normal, so one month into it is not time to worry ... it will come one step at a time. Hang in there. As long as he is making strides forward, even if slow, then you are on the right track. Don't lose hope.


Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.

===============================

"Those who think by the inch and speak by the yard, should be kicked by the foot."


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Kendall Offline OP
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Thank you all for your responses and suggestions.

Here is a little more information on his situation. He has a PEG and hates it, especially when we were using it in conjunction with the pump. No matter what speed we had it on it seemed to make him vomit more than when we used the gravity-bag approach. As of the last week he is not using his PEG at all. He is trying to drink orally five Boost+ a day (360 calories a unit.) He is only drinking about 2 cups of water a day. He will not let me help in getting any water through his PEG. There's always an excuse - it's too late, it's too early, I need to sleep some more, I don't feel like testing myself right now, yada yada. He has been hydrated numerous times in the infusion room, but now will not let me make him an appointment because he doesn't like being lectured by the nurses - they are always encouraging him to drink more orally or use his PEG. He also will not even try pureed solid food or even things like milkshakes, smoothies, etc. He also has a lot of the same excuses in the book for that. He will only drink chocolate Boost+ and hates the other flavors, especially the vanilla. As I understand, the Carnation product is vanilla flavored. He wouldn't even try it. Even when he makes five Boosts a day he is not getting enough calories and certainly not enough water to heal. The doctors, nurses and dieticians have all told him this, but he refuses to do what he needs to do to get well.

He complains about the awful phlegm, but won't take in water to help break it up and is only rinsing his mouth with H20/baking soda/salt maybe twice a day. I don't know when the last time he brushed his teeth - his breath is terrible.

He does take Reglan to help nourishment stay south, so to speak.

It's like he is hiding out in our upstairs bedroom 22 hours a day. I don't think he will see a counselor, but I will ask tomorrow. I have been going to a caregiver support group for two weeks.

Im afraid I got a little angry this evening. I did tell him that I will not bring the Boost upstairs to him anymore. He will need to come downstairs and get it himself. Also, if he wants me to continue doling out his meds he will need to do some of the other things I ask, mainly taking more water orally or through the tube and increasing the walking. Nothing too strenuous or difficult. I realize that it may seem strenuous for him right now but I do not want to be the 'nurse' who is enabling him to wind up in the hospital.

I guess what I am trying to say is that,from my perspective, he is being a butthead. I know he feels like crap, but everyone has told him he will continue to feel like crap if he continues the path he is on. I am willing to help him, but I don't know how long to put up with this behavior without getting seriously worried.

This turned out to be more than a little information. Thanks for 'listening'.

Kendall

Last edited by Kendall; 09-02-2008 12:40 AM. Reason: sp

Wife and caregiver to David, diagnosed with squamous cell cancer/Stage 4 5/08. Primary on left tonsil stub, spread to left neck lymph nodes. 38 IMRT/3 cisplatin completed on 7/31/08.
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Tell David he needs to snap out of it and pour down the water and calories. Tell him to forget what things taste like, that HIS JOB AND RESPONSIBILITY to himself and you is feed his recovery and it takes a ton of calories to do that. I would shoot for 3000 a day. Tell him that if he would drink 5 VHC's instead of the same amount of Boost he's almost there at 2800 calories. Same effort, more recovery fuel, no brainer. Once his body gets back in control he will start to feel better. That's what I mean by snap out of it.


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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Kendall,

I can not imagine going thru this ordeal with a stubborn, negative patient. It was hard enough with a very cooperative one. I will give you with any H&N patient, that there will be moments of negativity but your husband actions are basically suicidal. I support you in your unwillingness to enable this behavior.

I am not sure there is an answer since it seems you have called in all the professionals to get him back on track. Is there someone that he respects that might help turn the corner???...sometimes we caregivers are too close to the situation. I tell you truthfully, if my Bill had acted this way, I am not sure I could have stayed the course...it trully tests your marriage vows.

Thinking of you,

Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
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