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SIDE EFFECTS SO SOON

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

Hello, hope everyone in this group has had a great day.

I just completed my 15th Radiation treatment and will start my 2nd Cisplatin treatment next monday.

I contracted Thrush probably shortly after my Surgeries and it has been a struggle trying to get rid of it ever since. I know the Thrush can cause pain in the areas of infection, but that would be an understatement. The top of and right side of my Tongue literally feel like it has been slashed numerous times by a razor blade. My throat feels like the worst case of Strep Throat that one could ever get. I lost my voice Saturday and I think the Tongue pain has also radiated into my right ear. My teeth are also hurting, not real bad yet, but a strong ache that just stays with me.

Yesterday I went to what I can best describe is an Oncology Emergency Room located on one of the cancer floors in the Hospital. I told them all of the above that I just listed as well as my Blood Pressure that would drop as low as 80/60 over the weekend. IV Therapy at home eventually fixed this combined with not taking my BP Medication. I also have periods of hot flashes and sweating that can also turn into severe chills. With all of these symptoms / issues I was and still somewhat convinced something else is causing this. While at the "kina sorta ER" I had a chest X-RAY, full panel of Bloodwork, urine test and Blood Cultures that I am still awaiting the results for. All tests were Negative and or within normal limits.

I was on Oxycodon 20 MG/ML (upped today to 30MG) to be taken every 4 hours. I am also on a Fentanyl Patch (100 Mic's) this was increased to (150 Mic's) when I get the new patches tomorrow.

If anyone is still awake after getting through this way too long piece of jibberish, have you experienced anything close to this?? If yes, any other treatments that you have or are doing that worked??

BEST!!!

Mike

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

Unfortunately it sounds all too familiar. I started with side effects very quickly. Huge mouth sores, bleeding for hrs at a time. Pain in ears, throat, mouth etc. My RO and his PA said my mouth was pretty much the worst they'd ever seen. I'm only 5'2" and ended up at 87lbs and I was on 75 mcgs Fentanyl and they didn't want to give me anymore pain meds cause I was so tiny. I would sit on the end of my bed for hours in pain with my head held in my hands rocking back and forth just trying to breathe and block out the pain. And I'm not a pain whimp. Before this I had never taken a narcotic. I even had a biopsy on the bottom of my tongue with five stitches in it and never took the perscription they gave me. Radiation was hell and by far the most painful thing I have ever endured. Toward the end I had a lip lock on my magic swizzle bottle. Which I renamed notsomagic swizzle cause it didn't seem to be working.

Do you have magic swizzle or magic mouthwash?

I also had problems with low pressure and I couldn't seem to get in enough potassium. I had to have iv fluids three or four times.

I was only using my peg tube because my mouth was so destroyed. I would supplement my nutrin with high potassium and high fibre things like sweet potato baby food, prune juice, baby squash, pedialyte and other stuff to try and up my potassium and fluids.

Hope your side effects lessen. All I can say is hang in there. You can get thru this. We are all pulling for you!

Sweet

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

About that thrush: Believe me, I feel your pain.
The first time I got thrush I didn't know what it was, I just thought it was pain from the rads.
Consequently, I let it go on too long before I went to the doc in agony and asked what could be done. I had thrush twice, and fluconazole knocked it out both times -- but it was one of the most miserable experiences of my life.
Like Sweetblood (who has been through a lot more than I have) said, hang in there. The treatment sucks, and it sucks big time -- but it will save your life.

--Jim in Delaware

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

I was on fluconazole 5 different times. As soon as the prescription 15 day cycle ran out.
I got thrush again. I was told some people are like that. The treatment is horrible, but it is worth it.

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

Thanks for your reply and thank you to the others who also replied. Sounds like what I am going through is completely normal. Time to suck it up, take the meds and deal with it. Instead of being 15 rads in or 30, today I am 15 rads in and counting down.

This is most definitely a journey I will keep with me the rest of my life, but worth it knowing the cancer cells are suffering worse damage than I.

Thanks guys and have a great Wednesday.

MIKE

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

Yep, that sounds about right...I'd say you are right on schedule...bright side, you are almost half way through your rads.

Hang in there, it definitely sucks, but you'll get through it. Unfortunately, no pain, no gain. Just think as bad as you feel, the cancer cells are doing worse. You are stronger than they are, and you'll come out a survivor.

Best,
John

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

Sorry you can't be one of the small number who sail through treatment. Hope it eases up for you.

D-Byrd
Posts: 25
Joined: Aug 2010

Hi Mike I am Jason D-byrds son and he went almost the same things you have explained. He had thrush and they gave him medicine to get rid of it. He had rads on both sides of his neck, 60 gray on the right, 75 gray on the left and he went through it buddy. He also said his tongue felt like someone almost cut it out and it was just hanging there with enormous amounts of pain. They also gave him the patches and liquid loritab which helped him a great deal. The magic mouth wash worked for him also and I hope you have got the peg in by now or you will have a stay in the hospital for a week or so. Take the pain medicine and do the bacon soda, salt water rinses as many times as you can stand it. You will get through this Mike and I will say prayers for you. If you need anything feel free to ask me. God bless you and I pray for a fast recovery for you.

Jason

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Same here Mike, side effects are here to stay

Rita3710's picture
Rita3710
Posts: 14
Joined: Jul 2010

Good morning Mike,

My boyfriend Joe is on day 15 of radiation and he is experiencing everything you are but the thrush. I don't know if you have tried
a humidifier next to your bed. This seems to keep his mouth moist when he wakes up.
Joe has been through induction chemo of cisplatnum, 5FU, & taxetere. He
is getting taxol 1x week with the radiation, they had to stop the carboplatnim because of side effects.
The past 2 days have brought on the fevers and chills, his bp is running 80's/60's too, they are giving him extra fluids 2x week now. He is totally on the feeding tube for everything. He tries to swallow, but it is agony...I put a big X on the calendar, marking off the days..
He is also on the patch and liquid morphine...but he says he is in pain 24/7 anyway...also a constant headache.
Hang in there..thank god for this board...it has helped so much...healing thoughts and prayers coming your way...let me know if I can answer anything else or if you find anything else that relieves a little of the torture!

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

Thanks for your reply back. My BP is back to normal now. My wife gave me a Liter of NS on Saturday and then again on Sunday and all seems to be fine with this. I am fortunate that my wife is in a nursing leadership role at the same medical complex I am being treated at so she has been able to get the Doc's to go along with some home care options I bet others do not have.

The only test I am still awaiting a result for are the Blood Cultures. Everything else came back negative.

Have a great day!!

Mike

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

Mike,

It's an awful time. I had radical temp changes, freezing one minute then cooking the next. I has 3 of those soft ice packs in the freezer in my room and rotated them onto my face. I was so cold they put 4-5 blankets on me and still I was shivering. I think that is either the pain meds or the thyroid taking a hit form the rads.

I used L Glutamine powder for the mouth pain and sores. It is not an immediate fix but a good idea for all types of mucositis and maintain some good body tissue.

Hang tough, you will get through this Mike. We are all thinking about you.

Scam

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

Scam, I have seen you post about L-GLUTAMINE on several other posts. Is this something that can be bought at a Wallgreens or a GNC type store? I also see more people talk about success with Baking Soda & Salt w/ warm water VS the Caphasol that my Doc's have me using.

Your thoughts??

Have a great day!!

Mike

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

Mike,

The benefits are manifold, but basically it will help tissue in the mucosa heal (i.e. you mouth) Use it to swish n swallow. Best get the powder form and use up to 2 -3 heaped teaspoons a day. The powder is best.

Any good supplement store should have it, if not online. (many upmarket gyms sell it). Get a decent sized tub as you should try to stay on it for several months (or years). If you mix in water and drink or swish n swallow it will relieve the burning you get in the mouth. This is not a mouth wash as you need to ingest it but the added benefit it will stop some burning reaction when you eat/drink certain foods that you will find burn like hell. It is tasteless so easy to take and can go into the the tube as well.

Scam

PS there are loads of web site about this stuff.

http://www.ihealthdirectory.com/glutamine-health-benefits/

Excerpt:

This necessary amino acid also promotes normal cell growth and division throughout the entire body which may help the immune system particularly with diseases such as HIV, rheumatoid arthritis and scleroderma. It has been found to be helpful in recovery from surgery or serious injuries, as well, because the body rushes up to 30% of the body’s supply of the nutrient to the affected area. Supplements have been beneficial in those cases to maintain good muscle health during recovery.

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

I am glad to hear all of your test came back normal. At three weeks was when my dad first started having symptoms. He did not have as much pain as a horrible burning sensation. He said the baking soda/salt solution was the best. Hang in there things will start to get better.

Kathy

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

Rita, out of curiosity, is Joe having the Eythol (Amifostine) injections...just curious. Reason being, that was one side that eventually led to me stopping the injections around day 32 of the 35. I started having very high fevers and or chills as a result of I think just an accumulation of the Amifostine. Once I stopped the injections, I finished the remaining 3 rads and never had the fevers again.

I realize this may be totally unrelated in Joe's case, but thought I'd through it out there anyways for reference.

Best,
John

Rita3710's picture
Rita3710
Posts: 14
Joined: Jul 2010

Hi John,

He is not taking those injections; I mentioned them to Radiation Doc before he started radiation and they said they did not use them anymore. That is at Cape Cod Hospital and then I called his oncologist at Dana Farber in Boston and he said they don't use them anymore either? I double check everything probably driving everyone in the medical community nuts, but I figure more information is better information when someone is going through this!

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Hey Bro'

Sorry your getting hit with all the crap! Had the exact same sores on tongues. I did everything I could for that including baking/soda, L-Glutamine, magic mouthwash, etc. Some of us just get hit harder than others, it's the old story "everyone is different". Hopefully yours will get better sooner than later.

A couple things. I had thrush 3 times. The most effective for this was the Dyfluken. However it is damaging to the liver so I only took it once. The second and third times I used Nysatin (swish & spit rx). It worked ok but not as fast as the Dyfluken. The best thing that I used was pro-biotics. I learned of them from this site on my third time with thrush (thanks Pam M). Shortly after starting the pro-biotics the thrush was gone and hasn't been back since. Pro-biotics have a lot of useful effects and I'm still on them.

I did use the L-Glutamine during all of this and I'm still a big believer in it, but it didn't help with thrush or mouth sores for me. You can get powdered L-Glutamine at GNC locally (pill form also, but with PEG I got powder). Pro-bitoics you can get at any health store.

Good luck Man! Need anything let me know.

Greg

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

Looks like you are back enjoying life again.

I was given a 14 day supply of Difluken. I have 2 days left. I am also swishing with the nystatin 4-6 times a day, to no avail!!

Have you tried the Baking Soda and Peroxide? Did it work? Instead of water, just use the Peroxide?

I read on one of your replies that you are trying to either stay or convert to a mostly vegan diet. I have not read or researched that far out yet, but i read that people are swearing off of red meat??

To what extent are you changing any of your old ways going forward?

Nice to hear from you again

I will get through this too, just whining a little bit today.

Mike

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Mike,

This is a pic from a year or so ago (my hobby photo), but I'm definitely back to enjoying life. Going camping this weekend and have fishing trips lined up the next 3 weekends after that. I still have issues eating, but have the PEG scheduled to be removed. Still have a spit cup handy, can't hear too well, Lhemite's still gives me sting now and again, got some ringing in the ears, fatigued at nite earlier than I used to get and mucus is a pain, but Life is Good!! I'm here and enjoying everything I do now (6 months post treatment next week). I'm working out a lot again, fishing, hiking, volunteering at a dog shelter and just enjoying life! You'll get there soon!!!

What you're going thru sounds so familiar to my trip thru treatments. Sores in mouth, not being able to eat. I was like you, strong and focused and I didn't think I would get hit hard by the symptoms. But I did. I don't know the reasons 'cause I did everything possible to avoid them, but they came anyways. Everyone is different, you can prepare as much as you like, but it hits some harder than others. You aren't whineing - you're venting and ain't nothing wrong with that. It's a tough road, but you're tougher. You'll do good. And I'm serious, you need anything - call me.

I still use the baking soda/salt water mix - helps clear out the mucus in the morning. I didn't use the peroxide but know others did. As for the thrush, try the pro-biotics. That really worked for me on the thrush and I think it gives a lot of other benefits as well. I read your other post too. Get the PEG!! I waited thinking I wouldn't need it either, but ended being a lifesaver for me.

What got me to think about the switch to vegan is 2 books. "The Anti-Cancer" and "The China Study". And of course listening to Scam lecture us (kidding Scam, you're the best). The books really convinced me to give it a go. I really believe it will help me prevent a re-occurance. I will probably never go 100% vegan, but I'm trying. I'm not drinking anymore at this time. I'm waiting til I'm a year out and will re-look at it then. My doc's said it would be ok for a social drink (and remember I'm North County here too so I was weaned on Busch). Not to rationalize but the reading I've done says definitely to avoid smokes (goodbye cigars) but certain alcohol may not be as bad (red wine, dark beers). I know others will say absolutely no alcohol, I say personal choice. Let me know and I'll drop by the books if you're interested.

Hang in there Mike! Now and the next few weeks will be tough, but you'll kick this things butt and recovery for you is right around the corner. Sorry for so long of a post.

Positive thoughts coming at ya!!

Greg

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

I am definitely going to make some lifesyle changes. It would be beneficial for my wife also. I never smoked so that part is easy. Not being anywhere in a closed room with second hand smoke will not be a problem either. My two biggest vices are red meat and I do like my Grey Goose.

I am of the opinion "everything in moderation" so there will be cutbacks on the Porterhouse Steaks and the Grey Goose.

I do look forward to educating my self more on healthy eating once I come out of the other end of the treament machine.

Thanks for the good words pal!!

Mike

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