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Treatments done!!!

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

Well, finally! Today was the last day of radiation for my Dad. He finished up 35 rads and 7 chemo (Cisplatin).

The onc/rad doctor said yesterday that for now everything looks good: lymph nodes are probably not palpable anymore, but he didn't touch his neck because it is very burned. But my Dad says also that he can't feel any nodes anymore.
The doc quicky looked down his mouth and said everything looks good. His first appointment will be November 14th (two months from now). I don't know if that is PET, probably not.. Probably PET will be in 3 months.

His side effects are now the worst. He has a lot of mucous, but it does not worry him that much. He still has some saliva. But he can't eat anything but soup (beff soup without anything in it), due to so much pain. He does not have PEG. I don't know why, it never even was an option. He was physically strong and healthy and that's why it was probably never an option by doctors. But it worries me, because for a week now he eats only soup. He takes his pain meds that help a bit. My mom and I told that to doctor yesterday, but he said that things will get better and he will slowly start to eat again. He said that if he eats soup, then let him eat only soup, even for 10 times a day.

Those drivings to rads really exhausted him (80 miles one way - by ambulance car). I hope things will get better now at least that he can eat more because he will be at home. For those past days the problem was those drivings (he was away from home from 9 am to 3 pm). So I hope taht at least he will eat this soup more often now that he will be home every day.

So, for you out there who did not have PEG, when were you able to eat soft or mixed food again??? It worries me that soup will not be enough (even if he eats it 5 times a day)... Will he lose a lot of weight now? He already went down from 200 lbs to 171 lbs from the very beginning of tx.

Again, thanx for your wonderfull support those months. I don't know what I would do without you!

osmotar's picture
osmotar
Posts: 956
Joined: Jul 2011

First of all congrats on finishing the treatments. While the side effects are not pleasant each day whether it seems like it or not does get better, but it's a day at a time , and there will be days when you move forward in your healing only to wake up and take a step back, it's all part of the process and is different for each of us. I did not have a feeding tube, lost about 50lbs, but I had the extra weight to loose. I did loose all taste except for a few things , but still ate, while not having issues with pain or swallowing , I added cream soups to my diet, whey protein mix to milk shakes , as well as cans of boost or ensure. Mostly a soft food diet for awhile, but gradually adding different soft foods all the time, some things were easier than others.the main thing is to either maintain the weight loss he has or add a few pounds, my rad doc said food is fuel in healing , plus helps with muscle loss.

Best wishes for your dad's continued healthy recovery.

Linda

MarineE5
Posts: 762
Joined: Dec 2005

Vanessa,

I would only be repeating what Linda mentioned, so I will give you this little bit of information about the recovery period. We "Cook" for an additional 4-8 weeks after our final treatments. So, hopefully, your Dad will start to feel better around the 4 week mark. As Linda mentioned, each of us recover and handle treatments differently then the next person.

A side note on the eating, I found that it was easier on my throat when I allowed any food or drink to adapt to room temperature. Our throats after treatments are almost like a new born baby's throat, so temperature is important. Has your Dad tried any Yogurt yet?

My Best to Both of You and Everyone Here

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

I am happy to hear that the treatments are finished. Since we haven't been through the treatments yet I can't be a lot of help. I just wanted to let you know you have support.

phrannie51's picture
phrannie51
Posts: 3853
Joined: Mar 2012

Oz for oz, soup is probably the most nutricious food stuff there is, even if it's just the broth (for now)....as Linda said, creamy soups are easy to get down, also...and you can control how thick they are. My sister has made me creamy cauliflower and cheese soup several times during treatment. Many times it's the only food I can get down...all these creamy vegitable soups can be put in the blender so nothing has to be chewed.

I'm so happy for you dad....the last trip to radiation has been done...there is quite a freedom in that!!!

p

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

Tell your Father he gets a big WOOT WOOT, from the USA....

I didn't have a PEG, and like said above you're still kind of cooking for nearly a month post rads.

I used Ensure Plus to add any needed calories.

It didn't take me long though....within a month or so I was eating creamy seafood pasta, and soft creamy foods like that.

It took quite a while for most meats, because being so dry it made meat rough, way too dry.

He'll figure it out..trial and error. If something doesn't taste good, try again in a month or so.

Best,
John

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

It's great when the treatments are over. Just a week or so of rough days. I get my protein from Whey Powder; many here have survived on Ensure, Boost, etc. No one can predict what will be good for your dad. I only mention these as options. Rick.

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

As usually you're so helpful again :)). Thank you for every advice! He already eats the soup in room temperature. It only worries me that he will lose even more weight because he only eats clean soup. I know these are the roughest days and I know they will pass... He cannot even take Prosure right now. We'll see what happens in next days.

But yes, it is such a relief it is over. Treatments were tough, he did it. I hope it was worth it. But let us take one step at a time :).

Thank you again!! You're all wonderful!!

ditto1
Posts: 634
Joined: Mar 2012

and he can now recover and get a NED and move on, I finished 5 weeks ago and thats my hope. He will be fine as long as he eats something, and he will eat more now that treatments have ended. It may be slow and everyone is different but Im sure he will be ok. Im so much better now and it was the knowledge others gave me to know to be patient but hopeful and they were right. So God Bless you and your family and keep going.

BrianKrashpad's picture
BrianKrashpad
Posts: 188
Joined: Jan 2011

As others have noted, for a lot of folks the immediate post-rads part is actually even tougher, but at least no more long trips for him!

I'm very lucky despite that living in a small town, it's a university city with two major hospitals, so for me everything was very close by. I always felt bad for all the people having to drive in from adjacent counties.

Hopefully y'all can see the light at the end of the proverbial tunnel!

Be well!

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

Milk? Not too cold but with a slight chill. I was able to drink milk, skim or 2% and it did not burn or hurt going down ....in fact I would mix Ensure with skim milk (Ensure was just to rich and thick for me)

I also purchased "Whey Protein Mix" ...you can mix it with water or milk.

Even those of us who had a feeding tube still tried to eat as much as we could. Very soft scrambled eggs or eggs over easy was very good to me (but no salt) ..the eggs over easy just slipped down my throat and did not burn.

Protein is what he needs now...that speeds up the healing.

It was suggested I get a feeding tube BEFORE my first radiation...I did not want to but am glad I did ...I lost 70lbs during treatment!

I'm so glad your dad is done ....he will "cook" for several more weeks, the mucus is terrible and the pain / swelling of the throat is hard ...but be sure and tell your dad it will end...and get PROTEIN in his body :)

Say hi to mom as well. Very happy for all of you.

Best,

Tim

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

Well, I guess it is really worse AFTER the rads and chemo are over... He finished on Wed, on Thu he tried to eat that soup and take pain meds, but at night it was horrible. The pain was just unbearable, so my Mom called an ambulance and they took him on Friday morning directly to the hospital. He gets IV fluids and pain meds. He had fever last night,so they also gave him antibiotics. He cannot talk at all, just "yes" and "no".

Oh,it is horrible for me and my Mom, knowing that right now we can't do anything to help him. The nurse said it's going to get better, that it is the worst now... But from now on it will slooooowly get better.

It really hit him. But it's no wonder because he only ate plain soup for the last few days. Nothing else. When he could not take his pain meds anymore, he knew it's time for ER.

Please, keep him in your prayers that things will finally turn to better. At least a little bit. Thank you all! God bless!

Barbara B
Posts: 40
Joined: Sep 2012

Vanessa,

Your dad is at the worst part of treatment. At the risk of repeating, at the completion of treatment, the radiation is still 'cooking' the inside of his throat. However, it DOES get better. My husband is now one year post treatment and so far cancer free. When he was at this stage he drank one ensure plus (for maximum calories) mixed with a package of Carnation Instant breakfast and a raw egg in a blender.

Hang in there, time will heal and you will see he will begin to improve a little each day. And there is something you can do, try to stay positive. All the emotional support you can give him will help.

We will keep your dad, you, and your mom in our prayers.

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

He is still in the hospital on IV fluids because he still cannot eat. But he feels soooooo much better. Every day he is getting better. It doesn't hurt him anymore that much and tomorrow he will try to eat something by his mouth. He is remarkably strong person. I'm so proud of him. He told me on Sunday when I went to visit him that Friday (when he was admitted to hospital) was definetely the worst. He really touched the ground. He thought he will not make it. The pain was so unbereable. But then every day was a bit better.

Today he feels really good. He still can't swallow food but physically he is so much better. His neck is healing.

The doctors are not planning to insert him PEG tube. It is not even an option and they do not like to insert it to patients. They rather keep them longer in hospital to teach them and monitor them to star eating. If that still would not be successful maybe then they insert the tube.

Grandmax4's picture
Grandmax4
Posts: 597
Joined: Dec 2011

that your Dad is doing better, he is in the best place right now, the hospital staff and team of Drs will take good care of him. I was one of the fortunate ( if there is such a thing ) ones that chose surgery and was declared NED so chemo and radiation was NOT needed...so thankful. It will be 1 year on November 2, that my Dr preformed the de vinci robot surgery and removed my epiglottis...I still am on soft foods and may be forever, also have a problem with swelling where the lymph nodes are trying to establish a new route to rid my body of waste..but, all in all, I'm pretty much back to "normal".
This forum is full of wonderful, caring, experienced people, please keep us informed and know we're thinking of you and your family

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