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Last day of Chemo

arndog64's picture
arndog64
Posts: 538
Joined: Mar 2011

Today is my husbands last day of chemo and tomnorrow is his last day for rads. Now, he can get a break and start the healing process. I have posted in the past about my husband not eating. He is still not doing well with the eating thing. No peg tube. He only drinks one protein shake a day and the last ferw days he has only been drinking half. He is down 50 pounds and I am upset that they have not sent him to a nutrionist to help him get back on his feet. They have made comments about getting more protein and that is about it. I am just frustrated watching my husband starve himself on a daily basis. I know it's too late in the treatment process to get a peg tube. If I knew this would be so hard on him, I would have got the feeding tube in advance. I did not push the peg issue because he had weight to loose. Just frustrated!!!!

Noellesmom
Posts: 1312
Joined: Aug 2010

That your husband had weight to lose is not an acceptable reason for the staff to ignore the obvious: to heal, he must have proper nutrition.

People get the PEG tube at various stages in the process and I would not say it is too late for your husband. Some of the healing is very difficult and may futher inhibit his ability to take in nutrition by mouth. Radiation and chemotherapy are processes that continue for varying amounts of time.

The healing will likely be going on for a long amount of time.

Please talk to the doctors and nurses, and, if necessary, insist they schedule an appointment with a nutritionist for your husband. You need to know how to go forward, arndog.

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

Isn't necessary in all cases, myself and a few others are prime example....

For some it is essential, but I don't necessarily think this is one.

The real issue is why isn't he eating or taking in enough nutrients? Yes there is some pain, more in others than some. But bottom line is you do what you have to do to survive. That's a fact and the only fact...

Even without the PEG and taking in only liquids, I still ate a few peach slices each day to keep the muscles working. I didn't want to go through all of this and still not be able to swallow.

Exercizing the muscles is important, but taking in at minimal 3 - 4 cans (double that if possible) is imperative.

If it's a pain issue talk to the MD's about that, I used the thck numbing solution and dissolved a percocet for the final meds after finishing off a big glass of water, a can or two of Ensure Plus and a few peaches.

Personally, unless it were life threating, I wouldn't opt for the PEG at this point.

That being siad though, he needs to get his head straight about taking in the calories....no calories, no food, makes for a very long recovery.

Even with doing the things he should be doing, it's going to be a few weeks minimally to finish the cooking mode of the radiation.

Just the way it is...he can make it, several have..but he needs to make the effort and do whahtever it takes to survive.

BTW, even though you have no taste or saliva, or very little....you still need to do what you need to do.

I don't mean to sound harsh, but from the way I see it, what I have said is reality.

Thoughts and Prayers,
John

arndog64's picture
arndog64
Posts: 538
Joined: Mar 2011

I have to agree with the both of you.. I think he should force himself to do better with the eating issue. But, I also beleive the docotrs need to address the fact that he is not eating. Like you all said, he still has 4-6 weeks of cooking to go.. I have a call in with his nurse to see if they can recommend a nutrionist. Even though I have suggested this to my husband, he said he does not want to see one, because he is tired of seeing doctors.

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

I'm sure with the credentials above, you have your ways of making him conform....

JG

arndog64's picture
arndog64
Posts: 538
Joined: Mar 2011

You got that right!!!! I have not pushed the issue, but he is waisting away to nothing.

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

I think you can take him.....

:)

Best,
John

KareGiver
Posts: 291
Joined: Apr 2011

Even with the PEG, my husband is struggling. He can and does still eat some, but doesn't want to. He just started using the PEG last week (his last chemo is this Wednesday and has 11 more rads). We have met with the dietician several times during this journey and it has just been a part of it. I must agree that you should INSIST on it. A good one will guide you. Good luck to you both. Hang tough!

arndog64's picture
arndog64
Posts: 538
Joined: Mar 2011

They are going to have a nutrionist meet with us tomorrow after his last rad. We shall see.

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

That's great that you guys made it through all the rads. Definitely a cause for celebration. Sorry to hear about the eating issue. This is the reason why docs should insist on the tube. Even people that can afford to lose weight can't afford to go without nutrition. At this point it does seem like getting the tube would be a lot of trouble but I'd still have to recommend it. If he cannot or will not get the nutrition in by mouth then it needs to go in through a tube. A tube installed tomorrow means nutrition tomorrow. If you wait until later in the week then you might have to wait through the weekend. Here's the big thing; his side effects will most likely get worse for the next 3-5 weeks. I know that sucks but that seems to be the case for most of us. If he isn't willing to eat now he isn't going to be more willing in a week or even two. And the longer he goes without nutrition the longer the side effects last and the worse they are. If he wants to feel better he needs to either eat immediately or get the tube immediately. Those should be his only options starting right now. Of course he could chose not to do either but that kinda makes all the radiation and chemo a waste of time. I feel your frustration. I get it every time I read about somebody going through all this without getting a tube put in. It seems pretty rare that someone doesn't get the tube and does just fine without it. Almost everyone has the exact issue you are talking about and either ends up getting the tube put in after they've started treatment or is hospitalized because they haven't eaten for weeks. The tube should just be mandatory and then we wouldn't have to decide how tough we want to be. Again, I'm really sorry you're having to deal with this but you've done great getting him this far. Let us know how it all works out.

Bob

Hondo's picture
Hondo
Posts: 5887
Joined: Apr 2009

I know where you are coming from as I was the same way; my wife did everything she could do to help me to eat anything. The one thing she did was to make watery grits that somehow I could swallow and then she would sit there until I ate them. She also made sure there was nothing on the table I could hid the grits in, it was like being a little boy again with my Mom watching me. But it was what I needed to get passed that part of the process. Now that he is finished the healing process can begin so you will start to see things change in a month or so. Just don’t give up he will love you even more for all you done for him, it just takes time.

Take care
Hondo

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

Sorry Bob, but I have to disagree....

It seems pretty rare that someone doesn't get the tube and does just fine without it. Almost everyone has the exact issue you are talking about and either ends up getting the tube put in after they've started treatment or is hospitalized because they haven't eaten for weeks. The tube should just be mandatory and then we wouldn't have to decide how tough we want to be.

First, I didn't get the PEG, and I did just fine without it (as have several others on here)... I didn't refuse it, per the MD's, it was an option if needed. But it never was and for that matter, I never even came close to needing one.

I also don't agree that the PEG should be mandatory...it is and should be the doctors decision. If you have someone that is 107# like mentioned before and the doctors don't recommend the PEG, it's time for a new doctor.

It has nothing to do with being tough, or strong or any of those macho type things. It simply is a tool used for those that the doctors prescribe based on their knowledge and experience.

I'm not a doctor, I trust my doctors decisions....

I'm sorry but I tend to get irritated when someone states things that just are individual beliefs. Their is no gold standard for treatment, just like recovery, everything is different, they are all a mixture of variables that dictate what the treatment protocul is at the time.... chemo, chemo and rads, surgery, or all of the above...same with the PEG.

Yes, if someone is refusing to eat for whatever reason (which I have a hard time with), even if it's very painful and doesn't have taste, you do what you need to get through it. If that's taking meds for pain and drinking Ensure or equivalents, the PEG, whatever ...you do it.....or you don't and that doesn't leave much for an alternative.

Anyways, those are my thoughts on the subject of mandatory PEGS...as you have stated yours.

Best,
John

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

Sorry that my individual beliefs irritated you. I thought that was what we were doing here is expressing our individual beliefs based on our experiences in the hopes that it would help someone else. I certainly meant no offense to you or the people that chose not to get a PEG. Are there other rules I don't know of?

Bob

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

I was merely responding to your comments that I felt implied, that a PEG should be mandatory.

That nearly everyone that didn't get one was basically trying to tough it out, and of those most were hospitalized.

That was not my experience, I had choices, I wasn't trying to prove anything by not having a PEG...it seriously was not an issue for me. I know others here that have experienced similar to me.

That doesn't warrant me telling anyone that my way is the way that it should be done.

That's all that I'm trying to convey...there is not a one size fits all.

Anyways, you are always entitled to your views and opinions, as am I.

I wouldn't ever want to come across as saying that my treatment is the only right way and everyone should have that same treatment.

Best,
John

Jimbo55's picture
Jimbo55
Posts: 572
Joined: Jun 2010

I don't think John meant it that way Bob. Expressing our individual beliefs is fine and a big part of this board. I think the issue may be when people are stating their opinions as blanket assertions that cover the whole group.

I also take issue with this (not with you specifically Bob). A while back there was a thread dealing with depression and a poster opined that there was something not right with any cancer patient who did not get depressed. While I realize there are a fair number that do suffer with depression, and I am in no way denigrating their experience, I haven't and I'm pretty sure there is nothing wrong with me mentally. Although my wife might disagree with that on occasion!

Of course, I just might be mis-reading this whole thing and if that's the case, then I'll just shut up.

I discussed the PEG with my doc's and they didn't believe I would need it. The option was still there if needed later on. As it turns out I didn't need it. It wasn't because I thought I could tough it out, if the doc's would have recommended it at any time, I would have been fine with that. I can think of a number of others who made it through without the PEG with no problem.

Cheers

Jimbo

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

Not sure how it was meant but I got no problem with John getting irritated; just didn't seem too nice expressing it publicly vs. PM. It does remind me that we are a family though.
I guess my real point about the PEG is this: the people that did just fine without the PEG would have done just fine with it. The people that don't do fine without it suffer. If everyone got the PEG, everyone would do fine nutritionally while going through radiation. It bothers me to see people on here struggling nutritionally, at the point where it is most crucial, when there is a simple solution. This particular post is a good example of that. If the docs were to require everyone to get a PEG prior to radiation the problem wouldn't exist. I'm in agreement with John that we need to do what we need to do to survive and that means eating when we don't feel like it. But I'm also sympathetic to the fact that it just doesn't work that way for all of us. For whatever reason some people just don't eat when they should and we read over and over on this board how troubling that is for them and their caregivers. There is a solution and it is the PEG. That is my individual belief based on my experience and what I have read on this board many times. I welcome kind and intelligent discussion of this from everyone here. Thanks for yours Jimbo.

Bob

KristynRuth86's picture
KristynRuth86
Posts: 144
Joined: Aug 2010

Doing a celebration dance over here for you both!! I'm so happy he gets to start the road to recovery!!

As far as not being able to eat/swallow that was my case. I never had a feeding tube and I got pretty darn skinny, (not bragging just saying!) but I refused the PEG at the end b/c I felt I could push through it until my swallowing abilities returned. I COMPLETELY understand your point of view, as you are his wife you are hurting seeing him get so thin and weak. I can only offer prayers that he is able to swallow again and receive nurishment soon. I remember how hard it was and I'm saddened knowing he's going through that now. In *about* 3-4 weeks you'll start to see an improvement (I'm hoping). Anyway take care sweet pea, and know y'all are in my thoughts!

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

I was going to PM you for this reply, but since you mentioned I posted my original comments on the public forum, I'll also post this here as well.

I apologize if you took it personal, it wasn't intended or directed at you specifically.

I can see from your last post that you are very committed to your feelings and experience with the PEG, as am I for not agreeing that everyone should be required to have one.

With that I'll just agree to disagree....

Best,
John

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

I appreciate your apology and that you didn't intend anything personal. I honestly just don't like to read about people suffering unnecessarily. Unavoidable here I suppose. I respect your opinions and your advice and know how much you care for all the people on this board. I'm sorry for getting my dander up. I'm finding myself to be a little more emotional in this new life.

Bob

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

Congratulations to the both of you on making it through the treatment! Now on to healing. I do believe Buzz would not be alive if he had not had the peg tube put in before the start of treatment. He developed a total aversion to food right from the start, after the first chemo and before radiation was started. He went 6 months not eating. Now he is eating everything and his quick recovery can be attributed to receiving adequate nutrition during treatment. A nutritionist can be invaluable and you should have been referred to one months ago when your husband started to lose weight. Sure most of us need to lose weight but adequate nutrition is essential to the healing process. I hope you get help and that your husband gets proper nourishment. Karen

DrMary's picture
DrMary
Posts: 527
Joined: Nov 2010

One, of course, is that it hurts to eat and will continue to hurt past the end of radiation. The numbing solutions can help, but it's not fun.

A second issue is that the amount he needs to eat might be overwhelming at this point - it's really tough to struggle through swallowing 8 oz only to have your beloved caretaker let you know that "it's not enough."

Lastly, you are likely dealing with food aversion. It happens in anorexics but also happens to folks who don't voluntarily starve. It's almost as if the body says that it doesn't want to go back to being dependent on food ever again.

If you have survived the meeting with the nutritionist without agreeing to a PEG (ours really pushed for it right about at the point you're at - she was not happy that we declined) then you need to plan cooperatively how to address these three issues.

I'd suggest setting goals - pick the amount of "food" he was comfortable eating today and agree that he'll shoot for the same amount tomorrow, then eat about 10% more for the next 2 days, go up 10% again for the next 2 days, etc. This will probably take you about 2 weeks to get him up to maintenance calories (and then you want to increase some more to help with weight gain) but slow and steady works best.

You do need to make sure he's getting nutrition and not just calories. Again, you've got to work that out together. I hate Boost Plus, but I do have to admit it is better than nothing. Doug used that as his goal - every few days, he's shoot for adding another Boost Plus to his intake. After 3 weeks, he was up to 4 of those per day, plus 2 home-made milkshakes - a total of about 2500 calories per day. (You can pack calories into those milkshakes pretty painlessly with Carbogain and - if he can digest fat OK - cream).

Lastly - my favorite to bring up - constipation contributes to food aversion; make sure he's hydrated and taking in fiber.

Good luck!

Hondo's picture
Hondo
Posts: 5887
Joined: Apr 2009

Well 1st day off the rads & Chemo how do you feel, don’t answer that I know the answer.

Just wishing you the best on a quick recovery
Hondo

Goalie's picture
Goalie
Posts: 184
Joined: Sep 2010

I see that my lovely wife, the "love of my life" she called me elsewhere, has posted and so will I. I am in Mexico for work this week and doing pretty well.

Congratulations. About a month ago this point looked so far away. Some people say that for a time you will get worse after the end of treatment. I didn't and you may not. Which does not mean I got a whole lot better a whole lot faster. I didn't. But it was definitely better day by day from that last day.

Physically, at least this is true. But we also found a certain nostalgia, bordering on depression, as we lost the daily anchors of our existence which were our "tanning" sessions. Even today I can tell you that I sometimes miss that singularity of focus that we had with the next session, the next sort-of meal, the next Boost, the next pill. I guess soldiers sometimes feel this. too.

Nevertheless, I did feel compelled to join in on the PEG discussion as I always do. I admit that I found the assertion that everyone should get a PEG no matter what the circumstances to be, let's say, provocative. I don't believe that any medical procedure that involves surgery (however minor) and keeping a medical device installed and passing into and through you, can absolutely be without possible complications. For many, the expected benefits outweigh the possible consequences, but for many others, they do not. They didn't for me. I would no more recommend that every patient get a tube than that every patient get all his teeth pulled as a preventive measure.

For some, such as the older woman who weighed 107 pounds, or for those with other complications, they should be strongly counseled to get it. For others, it depends. For me, the most important criterion was that if I got a tube I couldn't play hockey and that was that. But it was miserable and we were sure close a few times.

So, be proud you made it, hydrate every moment you can, eat or drink what you can (I found I actually liked Boost fortunately), and thank your wife. Mine saved my life and yours probably has as well whether you yet recognize it or not. Doug

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

That is a little hard to conceive at first, and for awhile. It can even be a little depressing and actually rather scary.

You have been the center of attention for so long...everything has been planned and scheduled. All you have to do is show-up and strive for the moment you are now at.

Then all of a sudden, you are cut loose for several weeks or a few months at a time between various pokes, probes and scans.

Hang tough and just try to let it sink in...YOU MADE IT, you are still here and alive.

Through time, you'll start to be come more independent again and start feeling like your old self, only with a new normal as we say....

Hang Tough,
John

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