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Hondo's picture
Hondo
Posts: 5738
Joined: Apr 2009

Mick a lot of us here are a little worried because we have not heard from you in a few days, hope you are doing well my friend. I know the treatment is more then likely getting very hard right now, just hold on the finish line is not to far away now.

All the best to you my friend.

D Lewis's picture
D Lewis
Posts: 1528
Joined: Jan 2010

Mick;

My thoughts are with you. I hope all is well. You can do this.

Deb L.

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hi Hondo. I just answered a PM from my buddy and amazingly brave man Steve and I'll just post that. But before that I want to go on more about Steve after rreading a few of his posts. Dude, mowing the lawn? Going fishing? I can't even get out of bed to eat a smoothie at the moment. Damn man you are made of tough stuff! I'm taking major inspiration from your story and applying it to my own.

It's been pretty tough and I'm blogging it on my personal website www.justwrite.us. I just blogged today and came here to give an update too.

The roughest right now is food. I don't have a lot of pain from swallowing, but the taste. Ugh. Nothing taste good and everything makes me want to barf. Yes I have meds to help me through this but they don't help much. Claire (my Superwoman girlfriend/wife) has figured out a way for me to get 2000 calories/day in a way I can tolerate so that is awesome and started today.

The 2nd chemo round really knocked me on my ass. I slept for 2 days. Today was better and tomorrow will be better. 15 more rad treatments and 1 more chemo treatment and it will be over (forever I hope).

Best to all,

Mick

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

Mick,

Sorry you've hit a bad spot in the journey. It seems to me (not that I really know what I'm talking about) that the folks doing 3 chemos have a harder road than the ones doing weekly chemo. I could be (and very often am) wrong - just my opinion. I had weekly.

Going through a rough patch myself (only 2 rads to go - lost in a mountain of used tissues and paper towels; hacking/gagging lots), and was very glad to see your posts here and on your blog. I figure if someone else who isn't having fun can do something productive, no reason why I can't.

Keep trooping

GRAVEY's picture
GRAVEY
Posts: 84
Joined: Jan 2010

Yeah, I must have bought 50 boxes of tissues that I kept randomly around my house within arms reach. Especially by the bed, which I kept a little trash can right next to my bed also. Hang in there Mick, it WILL get better. I am 3 months out of my last radiation treatment(35 total, with 3 Chemos mixed in between) and after my last radiation on Dec. 17th, I slept literally for 7 straight days, just getting up to stomach tube feed and go to the bathroom, my wife and mother worried about how much I was sleeping, but the Rad doc said it was normal to sleep that much after treatments, I actually went back to work part time on Feb 1st, and am now on my 4th week of Full time back at my job. I would come home after my parttime job and sleep til the next morning after going to bed as soon as I got home around 1:00 1:30, then when I went to full time, I would stay at work til 5:00 pm, then come home and crash til the next morning. I am now able to stay up after I get home from work, and am feeling pretty normal now.
I do continue to battle with Thrush, which I would advise you to stay on top of also, because it can be mistaken for just throat pain from the Rads, but is SOOOOO painful, just be checking your self for the signs of it, so if you do get it, you can get some meds quickly and not have to suffer. I take diflucan 2 pills the first day, then 1 a day for the next ten. There are other modes of treating it that docs will choose, just make sure you have some on standby because you want to start treating it as soon as you notice you have it, it will spread really quickly.
Good luck Mick, prayers are with you my man, you CAN do this, take it day to day, concentrate on what is happening to you daily, so you dont lose track of anything.

GRAVEY

Pino Tea
Posts: 6
Joined: Feb 2010

I have just finished my 30 sessions (radiotherapy only) last Thursday. My problem all through this has been the taste of food/gagging. My throat is sore but not as bad as the horrible mucus in my mouth. Doctor said just to keep spitting it out. The salt/bi-carb (in warm water) does help slightly and I believe this can be a deterrant against Thrush. I can only manage about 500 calories a day by drinking one ensure and the odd bottle of Lucozade. The skin on my neck is quite sore with scabs but isn't unbearable. I have lost 16lbs and now weigh 124lbs so don't really want to lose much more. However, I have no desire to eat, and I know as soon as I try to eat the taste will just be the same yet. How long will it be before I can start to eat anything?

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

-that you're doing okay, Mick. 2000 calories should be enough to get you thru the rough times. Even with my PEG, during the worst of times I figure I was between 1600-2000, and did lose 17% of my weight, but I got thru it all okay, as will you. You're experiencing what we all have, Mick, and know we can all relate to what you're going thru. Just keep playing it as it lays, and know that when the treatment's done you'll get back to a more acceptable lifestyle, and you will fully realize that the toll of the battle has all been worth it.

Believe.

kcass

Hondo's picture
Hondo
Posts: 5738
Joined: Apr 2009

Just glad to hear you are doing well my friend. I know the stay in bed all day thing because the chemo would kick my but as well. Just remember if we don’t hear something every few days we tend to worry knowing you guys are in the heat of the fire.

As for Steve I too can’t understand how he could be doing so great must be that foxy Mama in his picture keeping him doing so well.

All the best to you Mick and thanks for giving us an up-date

Skiffin16's picture
Skiffin16
Posts: 8071
Joined: Sep 2009

Morning Mick,

That 2nd round of Chemo seems to be the butt kicker, it was with me also. Hopefully the rest will be a little better for you.

I like the updated photo, it brings home reality and past thoughts of my own.

Not to be taken wrongly at all, but it's too bad that we can't post photos. It would be interesting to see the before, during, and after photos of everyone. I think in some cases it would be a little theraputic actually.

I think it could help some that are going through the rough times of treatment to see just how bad others also had it. But that the after photos would give you the ability to look into your own future and see that you also will get through this. That you will make it through changed and experienced, but back to each of your own beautiful selves....

God Bless,
John

Hondo's picture
Hondo
Posts: 5738
Joined: Apr 2009

You can load pictures in your Expression and they stay there on your post, people can read what you put and you can remove then anytime. Go to my post and look under my Expressions.

Mick.

You should have seen some of my pictures, I had hair on one side but not the other, all the best to you my friend. I Looked like Dr. jackal and Mr hide

ratface's picture
ratface
Posts: 1238
Joined: Aug 2009

Hi Mick

Your'doing just fine. My first chemo no big deal. Second chemo and culmulative effect of the RADs knocked me on my ass too. try and get up and do something,. If possible take a short walk and don't forget the water bottle. I also started having some balance problems around this point, just couldn't walk a staight line and my feet were always scaping the floor. watch out for small bumps in the walkways. Third one is worse again and yes the reason that they split them into smaller doses twice a day was to remedy the toxic efffect. Either way this crap is poison. hang in there.

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

It do get rougher, Mick, but you can handle it. We all have, and they don't give you more than you can. Road gets rough, but the rough get- yeah, you know what they get. Let your Med team know if you need more help- it is their responsibility to get you thru this, along with you giving it your best shot. A new and much better day is just up around the bend. All you gotta do is keep the car moving forward, and don't let it get too far off the road. Manage that, and you will get to that new day.

Believe.

kcass

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

It is pretty rough around here. I'm doing ok eating but still losing about a pound a day for about a week after chemo then it levels and then starts to go up. It's making my Dr crazy, but he also says "you're doing great!"

The major problem right now is not pain as much as it is mucous. I have so much stringy stuff in my mouth that (TMI WARNING) it tends to stick inside my throat and cause a gag reflex and today upchucked about 300 calories that I worked damn hard to get down. I'm taking anti-emetics (adavan or zophron) to help, but am wondering if anyone has any ideas about reducing the mucous.

13 more rad treatments and 1 more chemo round to go.

Thanks.

mick

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

I will be paying close attention as i always do to the side effects
most shared with my boyfriend. The mucous is awful. You are so right!
He too has yet to find something that will thin it out. He isnt eating any
solids, and is only drinking protein shakes and Boost. but those tend to
coat his throat so he takes a long time to get it all down.
I feel for you Mick.

take care,

Chefdaddy
Posts: 164
Joined: Dec 2009

Hi Mick,

I wake up every morning with a horrible sore throat and then my throat starts gurgling like I have pneumonia. I then cough up, with great discomfort, a large wad of mucous and blood.
A few more times and then the pain starts to reduce a little bit, until I sneeze or cough, but that's from the burns.

I have 9 more radiation sessions to go. Today they told me if I lose anymore weight they are putting me in the hospital. I am losing between 8 and 9 pounds per week. I still haven't received the new canned liquid food (doesn't contain Iodine)for the PEG. They said they shipped it. The radiation doc was very ticked and said he was going to call the supplier himself to find out what the problem is.

I am really glad you can still get food down, I can't even drink water, as it burns my tongue and throat and the pain is too much to bear.

I am very impressed with how well you have been doing through all of this, keep it up!

Your friend

Mike

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Guys,

I recall my Doc prescribed 'Fluimucil' (Generic name: Acetylcysteine) Indication: Used mainly as a 'mucolytic' and in the management of paracetamol (acetaminophen) overdose.

As I only had no-one to compare with at the time, I can't say it knocked out the mucus 100% but it certainly helped. It is also generally good advice to avoid dairy products as these exacerbate the problem. I used Rice Milk as i gather it is much better than Soy.

Once again I will plug the L Glutamine powder as a fix to stop the burning in the mouth. I couldn't drink water either and found if I put 1tsp of the Glutamine Powder in a glass of water I could drink it AND I used it to neutralize burning when i tried to eat or drink stuff that bought on the burning which was almost everything for a while. I would actually have the Glut Water ready when I was experimenting with different drinks as you occasionally will find you crave something thinking it will fine, only to discover quickly that it burns like the rest of the stuff.

Hope this few tips help.

Regds
Scambuster

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

The stringy mucous is horrendous. I hated spitting all the time. I got out an old pork and bean's can an used it as a spit cup. It ain't pretty but throwing up food was worse. The spit can helped me mitigate gagging responces from buildup in the back of the throat.

I found that a sugar free candy called Icebreakers, the fruity sour kind, was better than almost all the prescribed medicines after the first month. The candy also helped me with the cough from dry throat.

Skiffin16's picture
Skiffin16
Posts: 8071
Joined: Sep 2009

I think the Amifostine spared me the thick mucous.... Hang in there bud, you only have a few more days left.

John

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

Mick,

It's me - here - over here - in the middle of the mountain of used tissues and paper towels.

I feel for you - just finished rads yesterday, and the mucous/phlegm combo is making me crazy. The nausea that was long gone has returned, and I spend my time napping, wanting to nap, doing tube feedings, gagging, hacking, spitting, drooling and wiping.

Of course, lots of water is the #1 hint I keep reading to help thin the mucous. Several folks recommend club soda; a couple, Coke. I'm almost desperate enough to try the soda (even though I very dramatically swore off soft drinks, my former addiction). If I find an answer, I'll let you know.

Do well,

- Pam

Hondo's picture
Hondo
Posts: 5738
Joined: Apr 2009

A lot of friends here for one purpose and that is to help you cross the finish line, You are now passed the half way mark and headed for home stretch. In a few weeks you will be thinking back on the days when you were taking treatment because it will all be in the passed.

Take care my friend

pk's picture
pk
Posts: 192
Joined: Aug 2009

Been where you are with my husband. Hang in and hang on. Sleep away - it helps to pass the time and ease the pain.
PK

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

... As PK says, we've been there. Man, it does suck, and I feel for you -- but this too shall pass.
Now, 17 months out, the only problem I have is in the morning. I still have to hack and gack some stuff out of the deep recesses of my throat, but most of that is due to the fluoride treatment I do before bedtime. The Prevident seems to sink to the bottom of my throat overnight, but once I get it out in the morning, I have no trouble for 24 hours.
You will get better. Don't forget that fact, and keep your eyes on the prize.

--Jim in Delaware

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

Eye on the prize, Mick. Spit and get-out as much as you can, as often as you can. Only 16-months for me, Jim. Not sure what-all you're doing, Mick, but I used to carry a little pail I bought at Lowe's for a couple bucks to spit into- and carried it whenever I left the house. Only one I saw who did that at Chemo and Rad, but nobody said anything to me. Lost the need to carry it around week #7, after the hospital stay and I turned the corner. Keep in mind, with Chemo- don't think what you spit-up and blow-out is the kinda stuff you wanna treat as being anything other than toxic.

Yes, Mick- you're well into it, now, as the days are counting-down until it is over. We've all made it, Mick, and so will you.

Believe

kcass

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

you are doing great. i know that mucous is horrible. i am so amazed that you are still eating and drinking. you are amazing. only a little while to go until the treatments are over, then a couple of weeks of continuing to fry after they cooked you, and you will start mending. keep up the nutrition. get good sleep if you can. you can do it. sending good vibes your way.

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

Your at the rought part, Hang in There Mick, it's tough going, and good luck in getting something down, food seems the last thing you want to deal with...we are pulling for you. Dennis

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

Your at the rought part, Hang in There Mick, it's tough going, and good luck in getting something down, food seems the last thing you want to deal with...we are pulling for you. Dennis

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

Your at the rought part, Hang in There Mick, it's tough going, and good luck in getting something down, food seems the last thing you want to deal with...we are pulling for you. Dennis

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Thank you, thank, you, thank you.

Best,

Mick

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

I am glad you are almost finished with your treatments and you are doing so good. You and Steve and Deb. I read all the posts. All of you on here have gotten me so I am not afraid anymore.
I got a book yesterday from Amazon.com. Called "Life Over Cancer".Just started it, but there is an article on Mucositis. It said they recommend mixing water with 20 grams of glutamine and carry it around in a bottle. Swish around in mouth and swallow it. Says to use it every hour. I dont know this is what your doctor would want you to use or not, I am going to look into it.
10 more days until my neck disection.
Mary

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

Hi Mary,
I am using L-Glutamine powder and it seems to help with the burning sensation when I eat and I believe it helps some with the mucosa. It also has a small amount of calories and helps build muscle mass. It can't hurt, I don't think. And as for my courageous friend Mick, keep on keepin on man. My thoughts are always with you. Even though it is a real battle, looks like you are gonna make it. Now how is that for tough, EH?

Talk at ya later,
Steve

Hondo's picture
Hondo
Posts: 5738
Joined: Apr 2009

Hope everything is going OK Mick I know the rad and chemo if ruff on you about now but don’t give up my friend. I did look at your blog that is nice to have a running personal log.

All the best to you Mick
Hondo

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