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

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.

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.

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!

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.

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.

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.

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

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.

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

Hi, I'm replying to my own post, here. When I said earlier that if he wanted me to dole out his meds he needed to do some things I am asking of him I did not mean I would deny him his medicine. I would just ask that he take that responsibility over for himself.

On a side note...he is being a little more cooperative today. Probably because I told him how angry and frustrated I was this morning (yet again.) But this time I told him I didn't know if I could be the caregiver if he wouldn't cooperate and particpate in his own recovery since it's obviously not working for him or me. We'll see what happens...he did let me give him 6oz water and a high calorie can of 'gunk' in his feeding tube. And he did go for a walk with me this afternoon.

He did start an anti-depressant last week. The effects of those can be so subtle, though, depending on the person. Hopefully, it will help in another week or two. But if he isn't taking nourishment, water and moving he'll be really sick by then. Again, thanks for listening.

Kendall

Kendall
you did not come across as a "Kathy Bates" especially if one reads more than just that line you mentioned above.

M

Kendall,

My heart goes out to you and to your husband, it truly does. Facing cancer, and the harshness of treatment, has got to be one of the most difficult tests of a person, not only for the patient, but also for family and friends. I'm so glad you've not only reached for help here, but that you're going to that support group.

I wish I could give you a hug.

- Margaret

Kendall-Hang in there. As a fellow caregiver I can tell you that my husband was a real PIA in the beginning. He is about 9 months post radiation and is doing better. He is on a trial drug now and seems to be really better mentally now. The only medication besides the trial drug he takes is a Fentanyl patch for pain. He was a real nudge when it came to nutrition at first but now he is really on top of it. He mixes a can of the Jevity 1.5 and a can of VHC and takes it thru the PEG several times a day. Things still don't taste right and he doesn't have teeth on the bottom so this is the best way for him. He uses the pump and is quite used to it now.

Sometimes tough love is the only thing you can try. I'm hoping that you will get some insight from your support group. There are also many of us here that understand. Stay strong!

Sue

One thing to mention - the carnation vhc has 560 calories in a tiny 8 oz can ... easy to get down so in 5 cans a day he would be getting some good calories. You mentioned he does not like vanilla - my brother said he mixed in chocolate syrup with the vanilla ones and they were great. ... you may want to try this! nice part too is the VHC your medical may well cover it for you, which helps the pocketbook.

i sure hope things perk up for ya. it is so hard when you love em to pieces, want them to get better and they just won't do what is needed. you may need another nurse or aide type person to come in like once a week to lay down the law with him so you ar enot having to be the bad guy ...maybe he would listen better? not sure if this is possible but thought i would mention it in case.

hang in there hon.

After my surgery I had a very hard time being on a liquid diet and lost a lot of weight. I tried them all, boost, ensure, carnation...ect...ect...What helped me was I started mixing them with vitamin D milk...they went down and tasted better. I was able to consume more and in return I started to feel better. Shortly after, I started to crave soup...I was only able to eat broth...then I slowly added diced tofu. Since then I'm back on solids gained my weight back and I'm ready for the radiation part.
But, I did not start to feel better until I was hitting the 2000 to 3000 calories a day...it was hard... and carnation made it easier to hit that mark...after that...I felt like I started to heal a lot faster...In fact, my girlfriend had to tell me to stop the carnation..that I was getting a little chunky...Hopefully, this will help a little...Tell your husband a lot of people are thinking of him and wishing him well...

Kendall . . . we all know this is very difficult but as pointed out he has to have the intake. He's got the peg and it was a lifesaver for me - use it. My mouth was so messed up after 10 tx that I could only swallow small amounts of water and that was a pain. I poured 2500 calories a day down, plus some water, plus all liquid medications for 3 months. I couldn't stand the taste of Boost and the other stuff either but one way or the other your body must have support - particularly now. Tell David there's a light at the end of the tunnel which will get brighter with time. Good luck.

Thanks for your support. It really does mean the world right now.

So, I'm getting the picture. Get the Carnation VHC. I ordered a case from our pharmacy today and they will have it in by tomorrow afternoon. I ran the idea by David first, mentioning that it was vanilla flavored (which he doesn't like as most of the vanilla stuff tastes like coconut to him right now and he hates coconut.) I mentioned the idea of adding chocolate syrup (extra calories!) and he said to go for it. Even if he doesn't care for the taste it can still go into the PEG.

He has been behaving better today, as far as eating goes. I sound like a mother...wait...oh yeah...I am a mother (we have two teenage daughters.) He actually went in the car with me to buy some cases of Boost+ and carried them into the house.

We'll see how long before I need to stomp my feet again. I need to learn a more graceful way to do that.

Again, thank you so much.
Kendall

If there is a problem getting the VHC, consider Nutren 2.0, also by Nestle but 'approved' for PEG feeding and has 500 calories per can -- I think it only comes in Vanilla.

Christine is right about using the pump at night, set on very low speed -- Per her advice (Thanks, Christine!!), I've been loading two cans plus some extra water and an occasional dose of Ranitadine, with the pump set at 75 ml/hr and that has been working well for me. That's a lot slower than gravity feed and I don't notice it.

However, it's really good that David is swallowing his food because that will pay off down the road, and the walking is also really good. Keep in mind that recovery from the nuking is a very slow process and certainly has it's ups and downs.

Try not to pressure him too much as it sounds like he's the type that the harder you push, the more he resists <grinz>.

Hello,
I thought I would give an update on David's situation. I've been computer challenged the last month or so (no laptop and competing with everyone else for the computer.)

David is doing better. I did have to go in and basically stomp my feet and wave my hands around to get a psychiatric diagnosis for him (as opposed to a prescription from the oncologist.) After three weeks on the first anti-depressant he was worse, not better, then when he started taking them. He is on a different med now (Wellbutrin) and that seems to be a much better fit. Plus, he was given some exercises, both physical and mental to do which seem to be helping his outlook.

He is back to work 3-4 hours a day, with a tentative plan to work back up to 8 hours a day by Nov. 1st. He is getting a little stronger each day and his personality is coming back. Yay!

This timetable seemed feasible until we got the results of a Petscan he had yesterday. There is no evidence of the primary tumor, but there is some 'suspicious activity' around the left side lymph node area. So...we are waiting for a call from the ENT specialist to see what is next. I suspect selective neck dissection surgery, although it would be nice if he did a biopsy first to see if it is really necessary.

I am learning to surrender to this journey, as I think it doesn't ever end. Thank you for all your support a month or so ago. It really helped me through this tough time.

Kendall

Kendall

Thank you for the update. Its always nice to hear some positive news about patients recoveries. Its wonderful news the tumor is gone. Going back to work even part time can be the greatest therapy there is. It makes you feel somewhat normal again to get back into that familiar routine.

Please try your best not to get overly upset about the scan. There are many many flase positive readings. I know its easier said than done when results dont come back the way you want. The false positive happened to me and it sure can scare you. Inflamation or an infection can cause them to light up wrong.

You wrote about accepting the journey as never ending. Sometimes I start to think that way too. I try to remind myself of how far Ive come and not how far I still need to go. It does help ease the feeling of helplessness and that its beyond your control.

Please remember that OCF is here for support for you as a caregiver too. Being a caregiver to me seems like it might be just as bad as being the patient, maybe worse. Ive been the patient. I dont know how caregivers can do it and always keep up the calm, caring and helpful mannerisms. It must be extreemly stressful to hold in your feelings to put the patients feelings first. Dont forget you can always lean on us here at the OCF forum for support.

Hoping for better news to come about the results.

Kendall --

DO NOT get overly concerned about the PET scan results. I had my first PET just about the same interval after treatment as your husband (my tx ended 7/11/07, 1st PET was 10/2/07). Report came back with three lymph nodes "concerning for metastatic disease". My MO, RO and surgeon all looked at the report, looked at the scan and said I had nothing to worry about, just effects of treatment. Sure enough, when scan was repeated in December, two of the suspect areas were gone and one was less obvious.

THere are any number of threads on this site devoted to PET results and false positives. Do you know what the SUV values were for the nodes showing up on the scan?

Hang in there!

My last Pet showed false positives. That was a month ago or so. Dr said that happens too often but it is a great test.

I see the PET as being a flag-raiser to direct the various docs' attention and check out on the CT. I believe I can see my tumor on my last MRI/CT/PET scans.

Hi all,

Thanks for your words regarding the petscan. Unfortunately, the MO, RO and surgeon all agreed that surgery is the best option at this point. The 'suspicious tissue matter' is apparently too large to be considered scar tissue or residual effects of the initial treatment. So, surgery it is, on 11/14. I am glad the surgery is a little far out as that will give David more time to heal and gain strength. On the upside David is continuing to eat a little bit more day be day and is starting to seem a little more of his old self. Day by day, it is what it is...my mantra these days.

Kendall

perhaps asking for a repeat scan or a ct to confirm concerns may be a good idea prior to doing another surgery when so many false positives are common place? I asked my surgeon to do a second CT scan prior to doing the surgery because it had been a few months and I wanted to know that all was confirmed and all was known prior to them going in ... he was glad he did the second one, as the site had changed size etc by that time, so they knew more when they were in the surgery room... i would definitely want a second test to confirm prior to surgery based on a PET scan being done so close to the end of treatment ... doesn't take much to light those up.

That's why a combined PET/CT scan is so helpful -- The slices in each view are coordinated -- The Radiologist and Doc can see the slice lit up in the PET and look directly at the same slice in CT.

Hi Rita & Pete,

The situation is that he did have both a Cat and Pet in the last 3-4 weeks and they both showed basically too much activity to be on the safe side and wait a month or two to be tested again. The ENT doctor showed us a comparison of the the cat done before treatment and the cat done after - not a lot of change in that there is still a significant mass, although it is only obvious when looking inside; there is not a big lump on the side of his neck any longer. David wanted to have surgery first from the beginning, but the doctor's thought they could get all the cancer with radiation and chemo. At this point, I think he just wants it out however it happens.

Thanks for your concern...I really don't know what to think right now. Really, if it is that serious (and I really do think it is; these doctors do not like to cut if they don't have to) I think it is better to do it and hopefully increase David's lifespan. This stuff is likely to come back somewhere and I would rather eliminate as many chances for it to do so as possible.

Again, thanks for your support!
Kendall

sounds like you are moving ahead with some good information then. have to go with your heart and do what you can to beat it. i wish you the very best and hope to get a good report as you move forward in the process. keep on keeping on and never give up.

Hi Kendall,
My boyfriend didn't vomit too much but I found that 5 of the nutrician drinks were too much for Martin, but he could manage 4. Also, if he sat up for 1/2 hour at least after the feed, he didn't feel nauseaous. Martin had some anti nausea tablets called Ondemet and they seemed to help. our hospital gave them as standard.
Maybe he also needs a kick to get him back on track. I hope you 2 can get through this and I do hope he listens to you and feels better soon.
C

I don't really know too much, but i do now that my father-in-law takes Ensure through his PEG and has maintained his weight and energy for quite some time with no vomiting. It may be someting to ask about.

Hi,
I know I haven't posted in a long time...just too much going on. David got through his surgery on 11/24 ok and none of the lymph nodes (22) that were taken out turned out to be cancerous. Good news.

We have been slowly trying to return to a 'normal' life, whatever that is these days. I just wanted to thank you all for your support during the worst of the times. I have just started thinking/feeling that maybe there is hope that Dh and I will have a more significant time together time-wise. And reading this site has helped....Again, thank you.

Sincerely,
Kendall

Kendall

Thanks for the update. Its always nice to see some good news about someone who has finished treatment successfully. Its very good news about the nodes all being cancer free. Hope for continued healing and good health for your husband.