Robert completed radiation Friday.He has 6 Cisplatin Treatments and 3 Erbitux. The medical oncologist plans to start Chemo with taxol/carbo 1 treatment every 4 weeks for 4 rounds, this is just in case some cells made it to the lungs. I am concerned with this continued chemo.Robert is not eatting, he will not get a peg and takes pain meds about one time a day. I have begged,cried and pitched a good fit to try to make him understand that the body must have food to live,but he just says I can not eat. He says it is not pain,it is desire.He told me today he does not want anymore Eribitux because it is making him feel bad, I tried to explain to him that lack of food makes you weak. He is a very smart guy, has a 149 IQ but refuses to relate his weakness with no food. I just do not know if adding more Chemo is the right thing to do, it is not normal treatment. He has had under 300 calories a day for over a week now.He has labs in the morning and I look for an admission.He has been getting iv fluid,so at least dehydration is not an issue.At what point do you say it is time to stop and let the body recover. I have not shared my concerns with Robert, I am scared to go against MD advice,but I do think that Robert is close to giving up, without even knowing that he is giving up.Thank you for any advice. I feel so helpless.

Nancy, although I was one of the few who did not experience it, I would guess your husband is suffering the very common depression that accompanies treatment. About the only thing he can control right now is food intake, and by golly, he is controlling that, which has nothing to do with logic. My suggestion is that he needs some antidepressants ASAP.

I had weekly treatments of taxol/carboplatin, and did not have any side effects other than hair loss, which was temporary. That is not at all the same as the cisplatin, which I also had and which can be rough. If he can get some nutrition, this remaining chemo will be a piece of cake.

I hope that some of the many folks here who needed antidepressants will chime in with their information.

Deep breath, Nanay. This, too, shall pass.

Ask his doctors if he can just get the carbo -- that's all my husband had for his whole treatment (plus 33x radiation) , and that at Hopkins -- and they know what they are doing as they get 100s of HNC patients a year. The carbo was a non-issue (my husband's exact words) and had few side effects. Taxol can cause nausea and peripheral neuropathy , the latter why his MO did not want him to get it as he has some issues with hand tremors.

But your husband's not eating is the 800-pound gorilla in the room! I am rather surprised that his doctors are not getting on this a lot more forcefully. A patient has the right to refuse any treatment (such as a PEG insertion) but there is no way your husband is going to get through 4 more weeks of chemo or anything else if he does not eat! Joanna is probably right, he is depressed and he needs that to be attended to as well.

It may be better to let him recover for a bit -- both physically and emotionally -- then do a PET/CT scan in a couple months and see what's what. Ask your doctors about this option. Additional treatment to the point where the patient is so debilitated that the success of treatment (and chance for a full recovery) is compromised is not logical.

Gail

Many cancer patients starve themselves to death. I believe the condition is called "cachexia". Like Gail and Joanna I am surprised that thr docs aren't on top of this and that includes the depression issue which is a well known side effect. Typically Cisplatin is given in three increments during radiation. I don't think I would have lived through all three treatments that I had (they shortened it to 2) let alone 6! You have also get his doctors to order a consult with a nutritionist. In spite of his I.Q., he is at a point where his logic is seriously flawed and quite understandibly so. I did it PEGless as well but it was VERY difficult and I had to force myself to eat inspite of tremendous pain and many other side effects. I think that I surprised some doctors that I survived at all.

I would not only look for an admission, I would demand it, the situation is well out of control.

Hi Nancy,

Ditto to all of the above. I didn't want the tube either, but it saved my life. I found no stigma to having the tube. I played golf, went to work, took showers, etc. I think most people who refuse the tube, refuse to recognize they have cancer. I hope you nand his Doc's can convince him of the need for nutrition. He will have a much harder and longer time healing without his strength.

Wish I could do more.

Steve Daib

Nancy,

I was on the fence with feeding tube, and eating in general. In my case, I looked at the feeding tube as "administering medicine". Anything I eat and drink down my throat is "physical therapy". It is the body doing all the fighting, so keep it fueled, and let it do its thing.

Get the tube......

Mike

Nancy - My husband from the first week of treatment did not want to eat. At that point he did not have a tube, but got one the second week, thank goodness. As to anti-depressants, he just started on Zoloft 2 weeks ago, and although he is still not interested in eating due to ongoing problems with nausea, at least he is a little more interested in what's taking place, whereas before, he seemed as if he couldn't care, and was quite contrary when I tried to get him to eat. As with your husband, he stated he just did not have any desire whatsoever. But the combination of the tube and the Zoloft is helping as far as he accepts the fact that he needs the tube for nutrition and is willing and I think relieved to not have to deal with eating. He still swallows liquids though, so far. I hope you can encourage him to get the tube, and some help from an anti-depressant. I wish you luck.
Michele

Thank you all for your input. We did see the medical oncologist today and he is wanting to wait and see how this week goes. He says since radiation is over that things should get better fast. I had to stress to them that the refusal to eat is a desire issue and not related to pain.Robert's labs were bad today, his white blood cells were 1.6 and last week that was 3.5,and his potassium was slightly low. We are to go back on Thursday to see if things are better and to discuss a peg. They started him on marinol to stimulate appetite, I hope it works.Robert's mom lives about 6 hours away, I have been thinking about calling her and telling her what is going on and asking her to come, he might have a hard time starving himself in front of her. He tells his family that he is fine when they call.Gary, I think that the 6 doses of cisplatin were small doses, so he got the 3 doses over 6 weeks, instead of 3 large doses.

Nancy,
I wouldn't categorize the labs as "bad" as much as typical. Most of out labs were "bad" early post Tx. It took years before my some of my blood chemistry started to be within normal ranges.

If I could have absorbed food by osmosis I would have - it takes a lot of energy, determination and committment to input enough calories. I spent most of my waking hours doing just that. He has to choose whether or not he wants to drag the misery out longer and that's exactly what will happen with malnutrition going on. Usually once a patient has lost over 20 lbs the red flags start going up. He's got to get at least 2000+ calories a day. I couldn't stand Ensure and Boost so I used Carnation instant breakfast and Hagan Daz milkshakes. There are some great recipes for smoothies as well. The taste buds started recovering in about a month and that helped a lot.

I think your MO is popping some of those marinol tablets. The radiation effects continue for most of us for many weeks post Tx and my side effects actually worsened. There is NOTHING fast about recovery from this. Progress is measured in three week increments - and I mean the slightest detectable improvement.

I can't really comment on the Cisplatin protocol except I have never heard of it given that way. But I am not a doctor so who knows?

I promise it will get better but he has to get off his ass and start eating whether he likes it or not. He does want to maintain his MENSA membership right?

Nancy,
My mom did the same thing not eating and she never had a peg tube. This recipe was a lifesaver for her...

2 cups ice cream
1 cup whole milk
1/2 cup half-and-half
1 package instant breakfast
1 tablespoon malted milk
2 tablespoons Ovaltine

Blend well.

This shake provides 1300 calories per serving.

My mom's body began eating her muscles to survive and she got very week and took longer than most to recover. Do whatever it takes to get him properly nourished because it makes a huge difference.

Take Care,
Dani