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what happens after chemo and radiation?

tllcaregiver
Posts: 10
Joined: Dec 2011

My mom completed chemo 2 weeks ago ( taxol/carboplatin) and did her last radiation session on Jan 5th for throat cancer.

She refused the feeding peg from the start but I had to have her admitted right after her radiation because she was malnourished.

She refuses to eat or drink anything, not even the supplements like boost and ensure. Its not a matter of pain for her. She seems to swallow remarkably well according to her doctors but she simply does not like the taste of anything except tea and broth, but even that she only takes tiny amounts.
Her dietician told me her urine contains a protein that one would find in an anorexic woman and that over the last 11 weeks her body had eaten 11 pounds of muscle to stay alive.

Her neck is terribly raw/burned from the radiation. She is in a lot of pain.

All of this is hard.She is so malnourished..and so mean too. She looks at me like I am the devil. She yells and vents all the time about everything negative. She is mean to everyone no one wants to visit her. I feel so bad.Is this a normal thing for a cancer patient? I just don't know what to do?

longtermsurvivor's picture
longtermsurvivor
Posts: 1800
Joined: Mar 2010

I just reread your questions from a few weeks back. These current questions are the same as the one's from before, just down the road a bit. Physically, how your mom feels won't magically get better. Radiation effect lasts a long time, and the first handful of weeks after treatment ends are honestly no better than the tail end of actual treatment was.

I'm sorry not to be a bearer of better news than this, but that's just the way this treatment works. All of us are pretty miserable by the end of treatment, and then things gradually begin to imrove. But it is up to us, not our helpers, to cope with the cancer and its treatment.

I honestly don't expect anyone will be able to tell you something that wasn't said back in December. I wish you the best, and I'm a current expert on coping with radiation, because i'm right in the middle of it myself.

Best wishes to you and your mom.

ratface's picture
ratface
Posts: 1248
Joined: Aug 2009

I don't know why human beings sometimes turn away the ones that love them the most. I sometimes think it's instinctive to try and protect them from the pain. Your mom is currently residing in several different pain worlds. There is first and foremost the malnutrition which is probably robbing some brain and thought function. There is the physical agony of pain associated with eating, radiation and the emotional part of losing her sense of taste. Additionally there is the whole process of putting your mind around the phenomena of cancer, the word itself is very frightening to most people. Add severe depression and inability to understand treatment or prognosis and you quickly see how her world has just become suddenly very foreign to her previous existence. Please don't take it personally but just keep her well being and best interest in focus.

sukichu61832
Posts: 12
Joined: Oct 2011

Scandishake Weight Gain Formula. One of my oncologists recommended it after I told him I could not stand the Ensure or Boost any longer. I do like it better and I mix the dry packet with 8 oz milk in a glass. I stir it with a fork. The blender adds too many bubbles. I can only drink the vanilla as the chocolate and strawberry burn too much. The great thing is that it is 600 calories, so I only have to get down two a day. I am still losing weight, but not as rapidly. It is not cheap. Four packets are $15. I ordered mine from Disposable Medical Express (online).

As far as the neck goes, I was prescribed Radiagel which kept burning to a minimum. Others have had terrible burns, no matter what they used. Getting the PEG would make a world of difference for her. She could then stop worrying about eating all the time. Why is she afraid?

Also, she needs to be taking an anti-depressant for a while until this ordeal is over with. Just call her primary MD, tell them what is going on and for it.

I am so sorry to hear you are going through this. If you haven't already done so, talk to a social worker at the hospital/clinic. They can give you some good advice.

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

Your mom has to use the PEG, have the Dr tell her she MUST....The scandishakes are great as Sukich61832 says.....I buy them from familyotc.com and get them for about $2.00-3.00 apiece. I order 40-48 (I think) for $99.00. I drink them when I'm on the road. Get the Dr's involved, she has to eat. The mental anger she has is normal I think, but we all try to suppress it. But anger does happen with "C"...why me?
So sorry you and your mom are in this mess. I hope you can get a counselor from the hospital or a Dr to help you along this very tough path...
Keep youself healthy and try to stay positive...Steve

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

When I looked back at your December 19th post, you didn't respond as to whether you have been letting her doctors know about all these things. It sounds to me like she could be depressed and be giving up. There are meds that can help with this. If she is in pain, there are pain patches, and meds to help with that as well. This information needs to be conveyed to her medical team, and they should prescribe things that can help. If they don't, then she has the wrong doctors.

I don't know how old your mother is, but my grandmother is 87, and she can get very nasty, and belligerent, and she has lately been saying some nasty and cruel things to me. I know my gram has dementia or Alzheimer's, or something, and she can get mean, and not easy to live with. I would doubt that is your mom's issue, if she is not that old, it sounds more like depression and her refusal to eat, will make her feel and act even worse.

She doesn't sound like she is able to take care if herself, and you really need to tell the medical team about this, and get them to intervene and get her back on track. She needs to get nourishment, peg tube, naso gastric tube, something. If she doesn't eat, she won't get through this.

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

She doesn't take in calories...she doesn't make it.

So if she has the PEG, it shouldn't really matter concerning taste. Either way, she has to take in calories or she won't survive.... It's kind of pointless to go through all of the hell of treatment, and then not take in calories.

Not only is she prolonging recovery, she is compromising her system.

I don't mean to sound mean, or nasty...it's just the way it is. You do what you have to do to survive.

If she isn't willing or cooperating, she's going to end up in the hospital.

As for her pain management, her MD's should be dealing with that in what ever means is necessary. There's tons of drugs to help with that.

Same with her attitude...while that's unfortunate, you can figure where it's coming from. Again, the MD's or facility should be able to provide some counceling or groups that she can share with others in her situation.

It's different for everyone, and we each deal with it whatever way that we need to.

But again, plain and simple.....you take in calories or you don't make it.

If she can't, won't or isn't willing...well, you need to take action to make sure she gets the care she needs to get through.

She can beat the crap out of you later...when she is strong again.

Thoughts and Prayers,
John

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

It's my understanding that she doesn't have a peg, that she refused it.

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

I used to weigh 335 before surgery and treatment. Then I was belligerent.
I lost 70 lbs. during treatment. One week out of treatment I decided
to build a playground for my grandkids. Thought I would work myself out
of the way that I felt. BIG mistake. I went to the doctor after about
2 weeks and just cried, because I did not know why my treatment did
not work. Had no idea what was wrong with me. I completely depleted my
own system. I guess what I am trying to say is, talk to your medical
team. Mine helped me through the pain, depression, and everything I
needed. They will help you and especially her. And what she don't
know, won't hurt her.

All the best,
Steve

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

OK, could be cornfused....but she is a prime candidate for the PEG....

Nutrition, calorie intake and a lot of hydration is minimal for recovery.

Again, sorry to state my opinions so bluntly, but I'm pretty passionate about life and survival.

Best,
JG

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

I also think meds might help adjust her attitude towards the Positive, but seeing a Counselor might also help a lot. Look, C is tough on the mind, and not everyone can handle it without help. Her anger is possibly a defense mechanism, but her self-imposed malnutrition problem is just making it more difficult for her- which her Drs should know and try to correct. I think the majority of us adjust rather well, mentally, and get with the program, so to speak. Seems to me that you should seek-out the person your C center should have on staff that deals with the mental side of C and treatment, and let them know there is a very real problem going-on. You might wanna start using that self-imposed malnutrition to do some venting of your own right back in her face- though I would not advise this, as she might not be equipped to handle it. Very sad, but she's likely putting herself thru a lot more of an ordeal than she would be experiencing if her mind was where it should be- in the Positive.

kcass

nwasen's picture
nwasen
Posts: 235
Joined: Feb 2011

Your mom really needs to get a grip on herself or risk not making it. Being negative and mean and not eating is going to mean she gives up.
I know it is hard....no one wants to go thru it. We all just want to wave the magic wand and be healthy again. It is not pretty and it hurts.
BUT if she chooses to get help both by getting a PEG tube or going for speech therapy where they can help her emotionally and physically get back to eating and by seeing someone for her anger issues, she can regain her life.
I had no taste buds at first and everything tasted like dirt so who wants to eat when nothing tastes good. I had the tube and it saved me. Maybe your mom can avoid having it put in but then she simply has to eat...if not real food, than Boost or Ensure.
She is lucky to have you. Take care of yourself too...don't let all this get YOU down.
I met a lady like your mom when I was in the hospital for one night when I had my PEG tube put in. I watched her run off every person who came to see her. I vowed then to never act like that.
A quick question; what was your mom like personality wise before cancer? My docs all told me that attitude was just as important as the treatment in recovering from cancer.
Good luck to you and I hope your mom will take advantage of all the help that is out there. You sound like a caring young woman
Nancy

jim and i's picture
jim and i
Posts: 1630
Joined: May 2011

I went through this a couple of times during Jim's treatment. He was depressed and hopeless and wanted to give up. He got mean with everyone and even our children didn't want to visit him if he was in that mood. It hurts a lot, I know. Talking to a cancer counselor will help you. I also agree that your mom is not herself and needs the choice taken out of her hands. I know it is hard, we had to do it with my mother-in-law temporarily. But the alternative is death. If you do not want your mother to fade away call her doctors now! If she is not eatting she has all ready given up. My husband can't taste anything and he is 5 months out of treatment. If it was not for the feeding tube he would have died. The body needs calories to heal itself. I can't believe the hospital sent her home without her eatting. To me that is malpractice.

Please do not delay. Call her doctors now.

tllcaregiver
Posts: 10
Joined: Dec 2011

first off, I want to thank you all from the bottom of my heart for your answers and suggestions and I am sorry I have not been on sooner to better update. I am sorry if I sound like a broken record about my questions here. I am new to this and even my own mind can be jumbled sometimes.
Just to let you know. My mom is 56 and I am 36.

Well as per all your advice, I did keep the hospital well informed of all the on goings she has been going through from the mood swings, to the malnutrition and on Jan 5th She was admitted to the hospital they told me due to her malnourishment and also they said she was neutropenic.

She was on IV fluids with potassium and such for about 1 week straight. It seemed to help her gain back some colour in her face and help balance her electrolytes but she did end up getting C-difficill and had to be put on meds to combat that disease.
Since she has been in the hospital I made calls to all the resources availible for Cancer patients and her doctors. I told everyone on board what I witnessed in great detail so they are aware of what has been happening.
They've been monitoring her food intake which seems to be going up slowly ( stil not enough to recover and gain stregnth but better) they've sent the volunteer community to her to reach out and speak with , she refused and basically threw them out.
They've also been sending in a psychologist which has helped her in some ways but she is still in a very bitter and foul mood all the time.
Before the cancer, I would have to say she was not the most kindest of people to begin with. She often sees the negative before the positive and so I've really grown accustomed to her negative ways. This now is like her times 1000. I have been taking it in stride. Her psychologist told me to let her vent it out and then try to bring normal topics to her which I have but she still seems focused on all the bad.
I guess this is just how she is coping. How she is dealing and her way of letting it all out.
Its like many of you have said though, with no food no nourishment she won't recover. I am hoping all the help from the doctors and hospital that they will convince her to keep trying.
She still refuses the peg.

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

You sound like you are on track.....

Even though it's really hard, there is only so much that you can do also... It has to be somewhat of a two way street.

You can't make her do something if she's determined not to.

Hopefully, she'll be determined enough to survive this.

Thoughts and Prayers for both you and your mother.

Best,
John

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Good to see she is increasing her intake - even if it's not enough yet. Sorry you have the added worry of her refusal to eat and foul moods; it must be incredibly hard for you. I hope you have a good support system for yourself, the strain will not do you well. Hoping your mom makes steady improvement, physically and mentally. Keep us posted.

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