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Toni08's picture
Toni08
Posts: 39
Joined: Jul 2011

Hello to all. Im a little embarrassed to admit that I have followed your posts religiously for months without saying a peep. Im contacting you all on behalf of my dad, Tony, a 64 yr old man diagnosed in february 2010 with stage 4 cancer of the tonsil with spread to lymphnodes. I am one of his 8 daughters, 25 yrs old. And i did not want to share at first because my dad is old school and wants privacy/ is apprehensive about privacy and the web.

Anyhow, I have followed all of your stories and advice religiously since my dads diagnosis. He hsnt been very open to suggestions but my family and I look to all of you for assurance to know whats next and what to expect. Hondo and Sweetblood, you two especially I would like to thank for being so dedicated in responses and for being consistent and so sincere. But each of you posting have been heard. Arndog, we have been in the same place at the same time.

My dad is almost 2 weeks out from radiation. It actually became 8 due to his missed treatments because of sickness and hospitalization from chemo. My dad has experienced it all and spent much of it in the hospital whether from blood clots, fever, dangerously low white blood counts, muscle spasms, severe constipation and nausea, dehydration etc. Hes lost a lot of weight but thankfully has a peg and has relied on it from week one. His chemo sessions have left him hospitalized for about 2 weeks each. And he has 2 left beginning soon. This time he will be automatically admitted due to complications. Thank god he is a veteran, and is being treated at Hines VA in Illinois.

He had spent much of the last two weeks asleep, nauseated, and in severe pain. Nonetheless, tonight he ate a hot dog and a cupcake he has been craving. Granted, in his words, it tasted like s**t. But his desire and effort means the world. His nose runs constantly and he spits "foam" regularly but hes hangin in.

To all of you who post, we are a family of faith always but now more than ever and we pray for you all. Nwsunni, you are not alone as I have made sure rheough prayer. Well wishes to you all and so much love

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

I can guess at how happy it made y our family tosee him eat that hot dog and cupcake, no matter how it tasted.

Sorry it's been so rough for him - glad they put him in the hospital for treatment times, now.

fisrpotpe's picture
fisrpotpe
Posts: 1338
Joined: Aug 2010

Hotdog and cupcake.... amazing after post treatment of 2 weeks.

I remember the rediscovery of the hot dog after going thru hell. They were soft and moist. I soon tried Bushes Beans after and they worked well.

Where in Illinois are you being treated?

Prayers continued for recovery and future treatments.

John

Hondo's picture
Hondo
Posts: 5812
Joined: Apr 2009

We are glad to hear about your Dad and glad you have decided to post, so here is my welcome to you in becoming part of the CSN family. Your Dad sounds like a very strong man and believe me we all know what he is going through right now. I will put him on my prayer list as I believe that healing comes from our Lord and Savoir when we pray.

Blessing to you and your Dad while in God’s workshop
Hondo

luv4lacrosse's picture
luv4lacrosse
Posts: 1392
Joined: Jul 2010

Hello and glad you have emerged from "lurker status." I am jealous of the hot dog and cupcake as I am 8 mos post treatment and still have trouble swallowing foods like that.

All the best to you and your family.

Stay strong!!

Mike

arndog64's picture
arndog64
Posts: 536
Joined: Mar 2011

Welcome to the board. I have found comfort within this group of people. I feel like I am not alone and I have many friends ready to lend an ear, advice, prayer, etc. and I am so glad I found this website. WOW! your dad has been through the ringer. Glad he is hanging tough. Keep up the good work.

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

Glad your father is getting it done.....

Eating is good even when it tastes like crap...water tasted like sweat to me also.

Foam spit, I can relate, so thick you can't get rid of it....

Most if not all will improve with time. Usually it's slow, measured in weeks nad months versus days and weeks...but having that time is a good thing.

Thoughts and Prayers,
John

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

... metaphorically anyway, a few months ago.

I had "blood clots, fever, dangerously low white blood counts, muscle spasms, severe constipation and nausea, dehydration etc. He's lost a lot of weight" and yes, I was hospitalized a couple of times. I joke that I had everything except boils, frogs, and fire raining from the sky. We found the nose running was because the rads had burned away all the nose hair! My wife recounts, practially in tears, the day that I snatched a chicken wing from her plate and ate it as the first meat and almost the first real solid food in weeks.

Yes, my dx was basically the same as his with a tonsil tumor jumping to a lymph node tumor and tonsillectomy, rads, chemo, and neck dissection. And yet, eight months out of treatment and six from the neck dissection, I feel great (not perfect, mind you). Hold on to the fact that once he gets through these months, he will be there for you for many years to come.

We have kids 21, 17, and 13 and if you want to hear from one of them about this, let me know. They were saints and heroes and knew when to quick grab a bucket when the vomiting was starting again and knew to get a fresh cup for the omni-present spit cup I had for weeks when it was all just too thick to swallow. I am sure you fit into this category and, even if he can't see it or express it now through his pain, he will tell you this down the road.

Keep strong, Doug

Toni08's picture
Toni08
Posts: 39
Joined: Jul 2011

Thank you for the welcome. A hot dog and cupcake was VERY surprising. It took very small bites and lots of liquid to get it down, and he felt all along it was going to come right back up..it didn't. For someone who has refused to put anything in his mouth other than meds and the minimum amount of water, this is a big step. I'm sure some of you can relate to the desperate desire to eat/taste again. He said he had been dreaming of cupcakes.

Doug, though I am not glad you went through the same exact things, I am glad to feel not alone. He has also complained of a constantly running nose. The only difference is no neck dissection. The doctor said because small cell has a high tendency to spread (? not sure on the details of this if his is different in some way from yours?).

I have been one to hold the bucket and rub his back while he's phlegm removing haha. Gross but I could not bare for him to be alone. Unfortunately I live very far from him so most of the time my mom is the angel.

To fistrope, Hines veterans hospital right outside of Chicago. Unfortunately my dad lives 2 hours away in Indiana but was a trooper to make the daily 4 hour drive. Are you in Illinois also?

jeepman's picture
jeepman
Posts: 109
Joined: Apr 2011

Toni,

Welcome to your second family. I agree with you on Sweet and Hondo, they are God's angels that spend countless hours encouraging us all. Doug is the man, he has gone through the gates of hell and come out the other side whistling a peaceful tune.

I hope that you guys can all get plugged in to CSN. I was sitting on the couch the day after my diagnosis and my wonderful wife Elsa stumbled across CSN. It has made all the difference for us. Theses guys are the most phenomenal people. Arndog has had it rough too, he is post treatment about 6 weeks now I think and struggling to bounce back. He and his wife are just great folks.

As for me, I was diagnosed stage 4 SCC with right side of neck lymphs involved. I am going into week 5 of treatment starting Monday and have been blessed to only have experienced debilitating nausea and faitgue from chemo and serious weight loss. I get chemo weekly and rads daily. It is tough treatment, but that is the cost for a cure.

I will pray for your fathers side effects to be minimal and his recovery speedy. God bless you and you family.

See you on here soon,

Mike

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

Thank you, and welcome. A hot dog and a cup cake is really good! Glad that you decided to take the plunge and post. :)

bpell0402
Posts: 61
Joined: Feb 2011

Glad you've finally posted and you've certainly found a wealth of information.

My mom was diagnosed with tonsil ca and we are the same. from one caring and concerned daughter to another, i know how hard it is to be in your shoes. sounds like dad is doing very well.. and im sure your love, support and research has guided his way.

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

Another vet here. Same treatment 15 years ago and the same problems. Wish I'd been able to eat a hotdog at that point. I remember trying to eat a German Brat and thought it would kill me.

Hang in there - all of you

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

Certainly can relate to that 'tastes like ****' sensation. First effort at pizza post treatment, smelled so good but tasted like absolute crapola. Hopefully with the rads part of treatment completed, his taste might soon begin to improve. Keep trying different foods, some tastes come back sooner than others. Stay strong for those last 2 chemos. Cheers

Jimbo

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

We can relate to your situation. Buzz had blood clots, dangerously low white blood cell counts, severe electrolyte imbalances, cardiac complications, two hospitalizations, muscle spasms, nausea/vomiting, etc. Just about all the problems that you and your dad have experienced. There is a light at the end of the tunnel. Buzz is now completely off PEG tube feedings, walking up to 2 miles, eating just about everything, and feeling mostly normal. You will get there too. Karen

Lelia's picture
Lelia
Posts: 98
Joined: Jun 2011

Hi Toni, I join everyone welcoming you to our exclusive club! Wanted to mention the option of a small home suction machine for the mucus/phlegm you mentioned is a problem for your dad.

I had no idea what she meant when our CNP recommended one, but when we got the machine delivered (insurance covered), learned it was the same size and looked identical to those nylon backpack-style thermal lunch bags with a shoulder strap.

It's a small suction gizmo with a wand to suck out the gunk, it's helped enormously and added some quality of life to post-treatment healing. Eliminates the messy spitting and stops the accidental swallowing of the nausea-causing stuff.

I also strongly rec plain, store brand, no-additive guaifenesin to thin the mucus, it's done wonders for us.

Toni08's picture
Toni08
Posts: 39
Joined: Jul 2011

Jeepman I wish you well in the last few weeks of treatment, you are not far now. Karen, (that is my moms name too :) I am so glad to hear of Buzz's strength, it really gives me hope! And to Lelia, I read about the suction machine from other's on here and mentioned it. He said the nurses used it when he was in the hospital but he wanted nothing to do with it on his own. He's been that way with his peg too. Will not do it on his own. Thank god for my mom.

As for dad, he declined a tube feeding yesterday because he wanted french toast and bacon! My mom made him take the tube feeding anyway because he could get just a few small pieces of food down. He's been driving her crazy...do we have this, can you make me that? He is on a desperate hunt to taste and is trying everything in sight. Ravioli (burned), Puerto Rican rice and beans (choked), Jalapeno pringles (nothing), Cinnamon gummy candy (said he tasted something but didn't know what). He isn't trying to eat for nutrition, just things that would be full of flavor. I am worried that he might get discouraged being that it is sooo early. But his enthusiasm and dedication for tasting is a beautiful thing to see. I thank you all for your replies and kindness and wish you all the best this weekend.

fisrpotpe's picture
fisrpotpe
Posts: 1338
Joined: Aug 2010

I know this is not going to sound right. At two weeks post treatment it is all abut just being able to eat, eating all you can eat and do not worry about what it is. In the beginning recovery stage it is going to take even more energy than during treatment. Keep in mind the radiation continues for 6-8 weeks post treatment. Again the amazing is the hotdog, at two weeks.... I am still smiling he is able to do that. I know of no one that could do this at 2 weeks post treatment.

So anything goes for the next couple months so he can just keep his weight were it is and not loose anymore. That will be months down the road.

Some things early that worked for me. scrambled wet eggs, fried sunny side up eggs, dipping gram crackers in 50/50 milk and water, pop cycles, mashed potatoes, fried mashed potatoes patties, very very thin oat meal, chicken noodle soup with pulling out of chicken, just plain broth, Cheereo's soggy, frosted flakes soggy, frosty's from wendy's, shakes

key is not what it taste like but what works and is easy to eat. for some the taste will come back months down the road

I believe at this stage the doctor's only worry about loose of weight, maintaining is most important.

Good luck with maintaing weight.

John

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