Week 5 of 6 radiation and chemo

tllcaregiver

Hello Everyone
forgive me if I am not allowed to post here as I am a caregiver.
My mom is 56 yrs old and was diagnosed with throat cancer. Her primary was never found but they went ahead and began her treatment
30 shots of radiation and 6 treatments of chemo which is a 2 hour drip of taxol and a 1 hour drip of carboplatin.

She is now really struggling with swallowing. She is finding even the simplest of liquids a struggle to get down. We have 7 more radiation treatments to go and 1 more chemo session.
She wants to stop and she has terrible mood swings. She is often mean and angry and cries a lot and it just breaks my heart. She does not seem herself at all and I feel like I don't know what to do to help her out.

She was told she should get the feeding tube but she refused it. She refuses all suggestions the doctors give her and spends all her time crying and suffering through this treatment. As her daughter I am so sad because I do not know what to do to help her.

Can any of you tell me some of your own experiences or maybe give me some tips to help ease her suffering and get more food into her? She is so close to the end I fear she might give up now.

longtermsurvivor

Here's the deal
Welcome to the group. You are certainly welcome to post here all you need.

Your mom is depressed. Not knowing her background regarding this, it is hard to know what to advise you beyond the immediate problems you've mentioned.

To begin with, there is a reason that this exact amount of treatment was prescribed. If she cuts this short, it will fairly dramatically increase her chance of treatment failure. Failure, to spell it out for her, means they may not cure her cancer. The implications of this failure are obvious.

You need to first recruit whatever other family support is available, then have a frank discussion with her about the situation. Explain to her exactly how you see things, and suggest immediate intervention by her health care team. She should be evaluated and treated for this problem, and obviously encouraged by everyone to continue to put one foot in front of the other and finish what has been not only started, but almost ccompleted.

She should be encouraged to attend support groups as well. SPONC has chapters in many areas, for instance.

Lastly, in medicine there is a saying, as blunt as it may seem, that "the patient has the disease." Not you, not the healthcare team, and not anyone else can walk this path for her. The most anyone can do is to encourage her to take care of herself.

Wishing you and your mother the best.

Pat

RogerRN43

PEG
The difference between feeling well or not can really boil down to getting enough nutrition/hydration.
I had my stomach tube all along, barely used it until at the end of treatments. Now I am using quite a bit as I wait for rad effects to simmer down. I continue to sip what I can, but without my tube, there would be no way I could get enough in me every day.

I think at this point, her swallowing will not get better, hopefully it does not get worse, but it will be a while until after treatment is done that it improves, so for her to get a feeding tube now may be a life saver. It is not hard to lose significant weight each week without getting in the proper calories.

Your mom sounds depressed and for her to give up, she would be giving up to the treatment, not the disease.
Please have her reconsider getting the tube, she does not have to starve, and she will feel better, physically and emotionally once she gets more intake.

jtl

PEG
Roger gave you very good advice. Without getting good nourishment the healing process is going to be compromised.
Regards,
John

sweetblood22

I agree with most everything
I agree with most everything that has been said. I had a peg tube and thank goodness because I never would have made it. She should listen to the advice of her medical team. If they feel she needs a tube, so be it. She should use what ever to that she can to get through this hell to the other side. She will recover more quickly and feel better if she is hydrated and nourished. I would not give up now. She has been through this much already, she can do it. Was it General Patton that said something like, when your going through hell keep moving. If she quits now, then the cancer may not be eradicated.

Is she taking strong enough pain meds? Have magic swizzle or magic mouthwash? Talk to the medical team and tell them
What's going on.

Skiffin16

sweetblood22 said:

I agree with most everything
I agree with most everything that has been said. I had a peg tube and thank goodness because I never would have made it. She should listen to the advice of her medical team. If they feel she needs a tube, so be it. She should use what ever to that she can to get through this hell to the other side. She will recover more quickly and feel better if she is hydrated and nourished. I would not give up now. She has been through this much already, she can do it. Was it General Patton that said something like, when your going through hell keep moving. If she quits now, then the cancer may not be eradicated.

Is she taking strong enough pain meds? Have magic swizzle or magic mouthwash? Talk to the medical team and tell them
What's going on.

Winston Churchill
It was Churchill....

I agree with Dawn, especially pertaining to what your MD's prescribe, their the pros...

I didn't have a PEG and it wasn't an issue for me, apparently I was one of the lucky few. Like you mentioned, even drinking water is tough.

I was fortunate enough that with pain meds, I could get enough liquids and Ensure Plus in me to keep on going. Even though it was at it's worse around week 4 - 4 during rads, and a few weeks after. I sort of reached a plateau, it never seemed to get any worse.

I made sure to eat a few sliced peaches, the kind in light syrup, just to keep the swallow muscles working..and plenty, plenty, plenty hydration.

Another quote, "Never Give Up"....Michael Iaconelli.

ALso, Dawn advice, find additional help for the depression...you have to stay positive and focused.

Welcome, and you as a caregiver have every much a right as we survivors for being here...you are the backbone of our exsistance.

Best,
John

Klynten

Skiffin16 said:

Winston Churchill
It was Churchill....

I agree with Dawn, especially pertaining to what your MD's prescribe, their the pros...

I didn't have a PEG and it wasn't an issue for me, apparently I was one of the lucky few. Like you mentioned, even drinking water is tough.

I was fortunate enough that with pain meds, I could get enough liquids and Ensure Plus in me to keep on going. Even though it was at it's worse around week 4 - 4 during rads, and a few weeks after. I sort of reached a plateau, it never seemed to get any worse.

I made sure to eat a few sliced peaches, the kind in light syrup, just to keep the swallow muscles working..and plenty, plenty, plenty hydration.

Another quote, "Never Give Up"....Michael Iaconelli.

ALso, Dawn advice, find additional help for the depression...you have to stay positive and focused.

Welcome, and you as a caregiver have every much a right as we survivors for being here...you are the backbone of our exsistance.

Best,
John

blessed
New to this site, I am truly blessed to have found it and I hope you will be too. What a wonderful group of caring people. And I agree, being a nurse, there is nothing more important to the patient than a great caregiver. And you sound like a caring and compassionate caregiver and I hope and pray your mother finds the help she needs. Like it was mentioned, it is your mom's journey and we can only encourage.

But my main reason for posting is to make sure that you are receiving the support YOU need. Working as a hospice nurse has made me realize that caregivers need support and sometimes respite! We need support, as caregivers, to continue the often overwhelming task of taking care of someone. I cannot imagine the stress, worry and sadness you carry watching your mother go through this difficult time. I hope you have outlets, things you do for you, whether that be hobbies, music, getting a massage, something anything that takes care of you.

May God watch over you and your mother during this time.
Take care of yourself too.

Clinton

ToBeGolden

Tube Feeding
Although I have not yet had the need for a PED tube, I have received nourishment through a nasal gastric tube. From my point of view, these tubes are more trouble for the caregiver than for the patient. But it is hard to convince a patient to accept a treatment that she does not want.

When I was undergoing radiation, I felt a lot of support from my fellow patients which I met in the waiting room. When I was a newbe, they gave encouragement. Then one day, I found that I was the veteran and expert patient, giving advice to new patients.

If possible, arrive for treatments a little early and try to engage the other patients when your mother is within listening range. Rubbing shoulders with a fellow traveler may be one way to lift the spirits.

I know my advice may not be appropriate in your mother's case. Wish I could say something magical that would help. Rick.

golaine

Also a caregiver
My husband just finished treatment for throat cancer, having chemo and radiation. He has a feeding tube and it really has been a life saver. Even with it he has lost roughly 45lbs so just imagine what would have happened without it. He just now, 3 months after, being able to get tea and pureed soups down.
Your Mom seems to really need help from those who have gone through it and can reassure her. Is there a Cancer Support group in your area? If so, you can go and find out things for yourself such as how to help your Mom then also see if they have counsellors for her. I agree with the others to take special care of yourself. You can only do as much for her as she will allow but it is hard to watch someone you love suffer.
We are waiting fot the results of my hubands' treatment and believe me, it has been a long haul.
Wishing you all the best.
Elaine

Mikemetz

Two points to make
None of this will be new, but I'm writing to emphasize the advice that others have already offered. First, food/hydration in your mother's case is the same as medicine, and she needs to find any way possible to get what her body needs. It took the docs three tries to get my tube inserted before my throat swelled up so much that other options would have come into play. And, I lost over 50 pounds before my weight turned around well after the treatments ended. But, I knew that's what I needed in order to make it through.
Second, your health is just as important now as your mother's--so YOU need to take as good of care of yourself as you are doing for her. While I was in treatment and post-treatment, my wife and I would make sure she was staying strong, too.

Mike

nwasen

Mikemetz said:

Two points to make
None of this will be new, but I'm writing to emphasize the advice that others have already offered. First, food/hydration in your mother's case is the same as medicine, and she needs to find any way possible to get what her body needs. It took the docs three tries to get my tube inserted before my throat swelled up so much that other options would have come into play. And, I lost over 50 pounds before my weight turned around well after the treatments ended. But, I knew that's what I needed in order to make it through.
Second, your health is just as important now as your mother's--so YOU need to take as good of care of yourself as you are doing for her. While I was in treatment and post-treatment, my wife and I would make sure she was staying strong, too.

Mike

The Beast
Your mom is at a point where she can give in or she can fight. She has alot to live for and crying and not listening to the docs is not going to give your mom her life. I was told right from the start that attitude played as much of a factor in getting well as the treatments.
She does need to get on an anti depressant (I sure did) and get the PEG tube. It isn't fun but will help save her life. I went from 134 to just over 100 pounds in weeks. The PEG made sure I had the proper nutrients and also kept me from losing more weight and not having the strength to fight the cancer.
I am a year out from Stage 4 tongue cancer and feel great and healthy.
Tell your mom that there are alot of people pulling for her that don't even know her.
You take care also and keep posting!
Hugs
Nancy aka toughcookie

Mikemetz

nwasen said:

The Beast
Your mom is at a point where she can give in or she can fight. She has alot to live for and crying and not listening to the docs is not going to give your mom her life. I was told right from the start that attitude played as much of a factor in getting well as the treatments.
She does need to get on an anti depressant (I sure did) and get the PEG tube. It isn't fun but will help save her life. I went from 134 to just over 100 pounds in weeks. The PEG made sure I had the proper nutrients and also kept me from losing more weight and not having the strength to fight the cancer.
I am a year out from Stage 4 tongue cancer and feel great and healthy.
Tell your mom that there are alot of people pulling for her that don't even know her.
You take care also and keep posting!
Hugs
Nancy aka toughcookie

What she said
Nancy had the honesty to say what I think many of us wanted to say--your mother can give in, or she can fight the "beast." Once a cancer patient makes the basic decision to fight back, he/she takes a lot more control of the outcome. Of course, someone can fight and lose, but if they don't fight, the outcome is inevitable.

Thanks, Nancy--it doesn't get any more straightforward than that.

Mike

jerry3

peg tube
Sorry about your mother.I am 6 weeks post radiation.I went through everything and more of what you have described your mopther is going through.It was the hardest thing I have ever been through in my 65 years.IT WILL get better.Take it one day at a time and don't try to rush things.Try and get her top agree to a peg tube.It will help considerably and no one will even know she has a feeding tube.It is completely hidden under your shirt.She has to have the calories and the protein and to help reduce the weight loss I know she is going thru.The depression and loneliness she feels is just part of it We all went thru it.Its not fun but it will get better.The throat will open and then you can start on soft foods and you will notice changes everyday.Try and get thru the radiation and then start the healing process.It takes time so try not to get impatient.I almost quit a lot of times but the doctors kept talking me back and thank goodness they did.It has been a long,hard road and its going to be a lot longer but yuou will start feeling better.Please talk to the doctoras about the peg tube.Sounds like she really needs it and she will be glad she did it.Good luck

staceya

jerry3 said:

peg tube
Sorry about your mother.I am 6 weeks post radiation.I went through everything and more of what you have described your mopther is going through.It was the hardest thing I have ever been through in my 65 years.IT WILL get better.Take it one day at a time and don't try to rush things.Try and get her top agree to a peg tube.It will help considerably and no one will even know she has a feeding tube.It is completely hidden under your shirt.She has to have the calories and the protein and to help reduce the weight loss I know she is going thru.The depression and loneliness she feels is just part of it We all went thru it.Its not fun but it will get better.The throat will open and then you can start on soft foods and you will notice changes everyday.Try and get thru the radiation and then start the healing process.It takes time so try not to get impatient.I almost quit a lot of times but the doctors kept talking me back and thank goodness they did.It has been a long,hard road and its going to be a lot longer but yuou will start feeling better.Please talk to the doctoras about the peg tube.Sounds like she really needs it and she will be glad she did it.Good luck

I hated week 5
It will get better.
There were about 2 weeks (and they were around week 5 and 6) where I took nothing by mouth. I did not have a tube, and lived on PICC line IV fluids. I don't recommend it.
I would even at week 5 get the tube, because as everyone else has said, it can be a slow process. The lack of calories becomes a vicious cycle making everything worse.
Take care
Stacey