CSN Login
Members Online: 3

Body temp questions..need answers please

lady4darknight's picture
lady4darknight
Posts: 90
Joined: May 2010

Hi all...haven't been on for a bit since I went under my treatment and came home but now need some answer please. I had 20 Avian radiation treatments on my tumor and finished June 23rd. Go back on Aug.2nd to see what further treatment. Had a PEG tube placed and a Power Port. But here is my problem....I can't get my body temp to regulate. I am either freezing or sweating with no happy medium. Guys. I am in so. Missouri and it is hot and humid and I either have goosebumps and am wrapped tight or am sweating then get cold from the sweats. Has anyone else had this and how to you fix it? My other question is I seem to have no or very little saliva and this makes it difficult to eat but don't want to use my PEG if I don't have to. What is the best thing to help that and if I don't use my PEG how often do I need to flush it? Thanks for all help.
Debbie

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Are you having Amifostine injections (eythol)... I had bad temperature swings when I was having those. When I stopped, no more problems....

Thyroid function is another variable as for fatigue, and body temperature. Have they tested you during blood labs (TSH testing)....

JG

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

Had wondered how things went for you in Tulsa.

Thyroid has a big influence on body temp. I'm only aware of feeling cold due to thyroid function, but hot may also be part of it.

Not uncommom to wash things down, due to lack of saliva, Debbie. Saliva glands do take a major hit w/treatment. Typical to adjust our food intake to fit the circumstances- trial and error. Ensure and Boost are good liquids- you need plenty of good calories in you/day. Fruit and vegetable produce is good, too.

As for the PEG flushes- did you get any big syringes? If so, wouldn't hurt to squirt 1/2-tube of water down the PEG every couple days. Am curious about your getting the Port- have they used it, yet? Typical for the Ports to be installed for treatment with pump(s), and the feeding tube for times when regular eating becomes too difficult. No surgery, other than the PEG and Port placements?

Was concerned about you, Debbie, as I know several others were, equally. Even if by PM, I would like an update on your status- important things the Drs. have told you about your battle with C, the specifics on your treatment, and how you're holding-up. Hope to get a response from you, Debbie.

Believe

kcass

lady4darknight's picture
lady4darknight
Posts: 90
Joined: May 2010

Hi, Sorry I didn't update everyone but my treatments and everything happened so fast and then the surgeries to place the PEG and Port which I didn't expect just threw me for a loop. I have had a total of 5 surgeries to reduce the size of the tumor and had 20 rad treatments. I had to have that horrible mask made for my face and used for radiation treatments and I am claustrophobic really bad so I had a difficult time with my treatments. Since my treatments have stopped and I have been home, I have had a time of remembering things that happened. I looked at pictures I took of when my family visited me and I have no memory of any of that time. Is that normal? Seems like I have 3 weeks I can't remember. Total blackout.
Thanks for the info on my PEG. I will make sure to flush it daily. I ave some 60 cc syringes that I got so I will flush with 30 cc twice a day.
As for my Port, it was used for all my blood tests but other than that not at all. I have found no one here at home will not access it so I will have to make sure to get it flushed at the local hospital monthly.
I have had damage to my larynx and my epigilitos because of the size of my tumor. Both of them are laying flat. The drs. say my larynx will still interfere with my breathing so I may not get my trache removed. But I have noticed since my last surgery I can breathe out of my nose so I am going to hope to have trache removed.
I go back on Aug.2 and will have repeat MRI and CT scans on the 3rd to determine what further treatments will be done. Hopefully nothing, but that will have to be determined. I will be greatful to just get my PEG removed. My life has changed so bad. I have a tube in my throat and my stomach and a lump on my upper chest that makes it very difficult to hold my two new grandbabies. They were both born before my treatments started and have grown so much while I was gone. They are 2 1/2 and 3 months old now and I missed them so much. I don't mean to sound whiny..lol. I am very glad to still be alive.
I am waiting to hear back from my doc about my body temp difficulties. I called to ask if possible my thyroid as been effected and I am just now experiencing this and if so what could be done. I hadn't thought about my thryroid. Maybe I can take something to fix it.
I am doing the water thing to eat and that helps and I feel stronger except for the body temp problem. I wish I could remember some things but maybe with time that will come back.
Well I will make sure to stay updated and will keep in touch. Thank you lots for all your concerns.
Debbie

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Usually they will monitor your thyroid thru blood tests like the TSH.

Mine has become elevated each time they tested it over the last year. So far no mention of meds...

From talking to the MD's and observations on here though the thyroid is easily controlled with synthetic meds. It doesn't seem to be hard to treat, but I do believe it's a lifelong process....but long life is what we're after correct....

Best,
JG

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

Hi Debbie,

Nice to hear you are finished treatments. I suffered the Hot n Cold thing for the last 2+ weeks of treatment and a week or two after. I then only really felt the cold and this went on for some time- about 2-3 months. As you are in summer over there, that shouldn't be too bad for you. I think many of us go through a similar trend.

I found the cold to be a problem (this was in mid spring so temps were a little cool) and since the doctors couldn't help I knew a lady who did 'energy healing' (or touch healing/natural healling), and I went to see her. Many may think it's rubbish but after 2 sessions with her, the condition improved 90%. I now don't feel the heat as much as most and now only very slightly more sensitive to the cold. Not really sure how it all works, don't care but it worked for me.

The consensus is this is related to the thyroid and that the Radiation causes some damage to the thyroid making it hard for you to regulate your body temperature.

On the dry mouth, this is a tough one and depending on how much and where the rads hit your mouth, you may or may not get back some or most of your saliva function. We have three mains pairs of salivary glands which produce the majority, but luckily there are a load of tiny ones spread throughout your mouth. If the major S 'Glands took a direct hit, the damage and effect may be permanent. I had the same dilemma and as the doctors just shook their heads - I went elsewhere. I have had about 8 sessions of acupuncture and have regained 10-15% of my saliva. While not a perfect result, it certainly does make things easier. I also take echinacea every day which is supposed to help too. I still need liquid (Water or soup) when I eat, and I 'lube up' my salads with olive oil, but if I keep my mouth closed, I can manage to keep my teeth wet.

Having enough saliva to moisten your mouth is critic for your teeth. I would recommend you try GC Mousse or a similar product. It is applied to the teeth in the evening before bed to protect them. You also need to brush after every meal and floss at least in the evening. Rigorous dental care is a must now. I use the Biotene mouthwash and toothpaste or a medicated or natural toothpaste (Avoid the Colgates etc).

Things should settle soon Debbie. You body had taken a beating so give it time to heal and the food it needs to do that.
Regds
Scambuster

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

Debbie,

Since treatment ended for me (8 weeks ago), I am cold unless the temperature is 80 degrees and above. I get too warm when the temperature approaches 100 degrees. I'm sleeping in a sweatshirt in July. Don't really have flashes of either hot or cold. At least I'm consistent.

Deb

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

for the info, Debbie.

5 Ops to reduce the size of the tumor seems a little different, but with where your mass is it might be correct.
Seems they woulda used the Port for the Op anesthesia. Just to take blood, though- could be you didn't need to have a Port installed. Could be your Drs. were being cautious, thinking there was a chance you'd need one, and in treatment would have not been a good time to get one. I get mine flushed once/month, and it costs $134 each time.

Have you had a Pet Scan? Expensive (+ $4K), but designed to find C. Seems your Onco/ENT would've wanted one done.

Well, you're wearing a lotta new hardware, with the Port, PEG and trache. Know it seems like a lot, and what's been dealt to you is over the top, but that's life, Debbie. You got young-uns now in the family, and you wanna be part of their young lives, so you gotta do what you gotta do. They are depending on you for that, Debbie. Great to hear from you, and hope you'll stay active with us.

Believe

kcass

staceya's picture
staceya
Posts: 700
Joined: Jan 2010

Good to know we are all freezing..thought I was turning into a reptile as I am only warm when in direct sunlight!

tonyanddenise's picture
tonyanddenise
Posts: 70
Joined: Jun 2010

K. C. Your knowledge is not only welcome, it is impressive. I am curious, are you stateside? Some how I got the idea you were not.I am a believer in alternate tx styles. open to suggestion. also curious if there was in fact a greater or more effective resource than in good ole Ohio..

zmoosdeen
Posts: 4
Joined: Mar 2010

It sounds like you're having quite a difficult time of it, but your attitude is great -- that is so very important, as is looking to the future with positive thoughts.

My wife has NPC, and was a week away from finishing her chemoradiation - after almost 3 months. Then it became very painful to swallow (or talk). She didn't want to take the pallative morphine they prescribed, so pretty much stopped eating and drinking (no tubes - oral only). Consequently, she became very fatigued, and her veins collapsed so they couldn't do the chemo. Then Neutropenic fever set in. She was hospitalized for 8 days, and after a day or two she agreed to an NG tube for taking Ensure & her meds. All started getting better immediately (although gradually). That was a very difficult time, and was probably preventable with sufficient nutrition and hydration. She's looking really good compared to 2 weeks ago, and will have the last IMRT the 14th.

So... I can't address your other issues, but I highly recommend you make full use of the PEG. You MUST keep up your nutrition and hydration, or your body will surely punish you. And you really don't need more problems than you've got already -- particularly preventable ones. Consume your nutrition and liquids however you can get them in, and keep consuming lots of hugs and cuddles with the grandkids -- that stuff is equally important, eh?

Good luck, Debbie.

chris731's picture
chris731
Posts: 24
Joined: Jul 2010

Debbie, I'm out about 5 months from treatment and I get cold still. I'm sure it will subside as time goes on and body temp will get back to "normal".

I wouldn't rely solely on the PEG because what you don't want to get is throat atrophy. You need nutrition so get yourself some Boost, Ensure or Carnation drinks to get your calories and vitamins to maintain your weight and help repair any damage. By drinking the drinks your using your throat muscles. Even though my doc talked me into a PEG, he still wanted me to use my throat muscles to stave off atrophy.

Flushing your PEG, you can use Coke or Ginger Ale. I used Coke once a week. I used the gravity feed with a 60cc syringe, I'd fill about 30cc of Coke, then use about 60cc of water.

I have little saliva as well, see if your doctor will put you on Salagen which helps stimulate saliva production.

lady4darknight's picture
lady4darknight
Posts: 90
Joined: May 2010

I have noticed that everyone says to flush with Coke. Does this help prevent bacteria? I have been just flushing with 60 ccs of water twice daily. I thought this would work. I haven't used the PEG for anything since Monday as I have been teaching myself to eat 5 small meals thru out the day. Got on a scale last night and was on down 2 lbs since discharge 2 1/2 weeks ago and considering I just started eating on Monday I felt pretty good. Meant I managed to somewhat maintain for the 10 days all I used was the PEG. My fiance still would like me to supplement with2 cans at night while I sleep with the feeding machine just to make sure I get my nutrients but I told him I rather enjoy not being hooked to it. I am slowly adjusting temperature wise...I can sit in the house with long sleeves and no blanket and when I go outside I don't need the hoodie in the heat. Still feel weak and tired but not napping doing the day anymore. Hey I have a question about swimming with a PEG. Can you? I have a trache and a port also so I can't swim but I would like to be able to sit in the pool but don't know if I can. I know I can't sit in the lake, river or creek with the Port because of bacteria but what about a pool and a PEG? Thanks for all the help everyone.
Debbie

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

Hi, Debbie

I was told by my gastro doctor that the primary purpose of the coke was to clear out clogs in the tube. It is acidic so it would also remove any mysterious "spots" in the tube as well. I was told that any spots would be mold or bacteria forming in the tube, and that daily flushing with water should be adequate to prevent it from happening. I was told to use coke if the water wasn't enough.

I used Jevity exclusively for feeding, as it was designed to be used with the PEG Tube. Other folks use Boost or Ensure, which I was told are suitable for short-term use, but likely to clog the tube with long-term use, as they are thicker than Jevity. Some folks like to use a blender to create their own custom, home-made meals. These are also somewhat more likely to clog the tube than the commercial Jevity product. That is where the coke comes in - to dissolve any clogs that happen this way.

I was told not to swim or use a Jacuzzi with my PEG tube. Also, I was told to allow at least a week after PEG removal to let the hole fully close up. Other folks' doctors told them that swimming was okay.

Deb

lady4darknight's picture
lady4darknight
Posts: 90
Joined: May 2010

Glad to know that just water will work. Have been flushing when I get up in the morning and when I go to bed or if during the day I see stuff floating in it, then I flush it then. My clip-the one to open and shut it-is down on the end of my foot long tubing and so I notice some times stuff seeps into it.

I am on Fibersource HN for my feeding and was told not to put anything like Boost or Ensure thru it as it was to thick.

Thank you for the advice on swimming. Guess I will stick to wading. I would never make it without all your help.

Debbie

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

Debbie,

If you need, you can shift your hose clip to a more comfortable (or more functional) position. Open the clip all the way, and then gently slide it up or down the tube. I worried that leaving the clip in the same place the entire time would stress that part of the hose. I moved the clip to a position about three inches out from my tummy. Even with just 3 inches, I would see things backing up into the tube - especially red jello. TMI, sorry. Flushing would make it go away.

Deb

tonyanddenise's picture
tonyanddenise
Posts: 70
Joined: Jun 2010

is this a pump or something? Have not heard of this.

lady4darknight's picture
lady4darknight
Posts: 90
Joined: May 2010

Tonyanddenise, Yes, I came home with a feeding pump called a Kangaroo Joey...lol...It is just like the ones used in the hospital only smaller and I can carry it in a provided backpack when I go out if I was getting feed thru it. It is very simple to use and you can program it to deliver your nutrient however you need to. When I use mine, I am supposed to consume between 32-52 ccs an hour depending on how my stomach tolerated it. The hose just slipped thru 2 openings and was an easy set-up. I am still new to this stuff and don't always call things by what they are. sorry for the confusion.
Debbie

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network