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What Side effects do you have?

james chambliss's picture
james chambliss
Posts: 70
Joined: May 2010

I am just curious about what different or the same side effects we are all facing. I have " Dry mouth, tingle in my finger tips and toes, constant stuffy nose, shooting feeling of electricity down my back that feels like it burst when it gets to the small of my back, ringer in the ears-not so bad anymore, fatigue from not getting enough sleep. How about you all?

I will say some things have improved. I am only a few months out and taste buds have been back for a couple of months. I have put back on about 18 pounds. I am way more active and have more energy to play with my son. All in all life could be worse, it could be over. I am above ground and though suffering some, seem to be pretty happy to be alive and with my family. Hope you all have a great day.

Regards,

James

Hondo's picture
Hondo
Posts: 5927
Joined: Apr 2009

The side affect I have the most is living in pain not only in my head but my hold body sometimes

james chambliss's picture
james chambliss
Posts: 70
Joined: May 2010

I can relate, but i try my hardest to stay positive. Not just for me, but for my family and friends. I have found that it actually helps me to get through the day on most days. It isn't always easy, but for me it's better than not being able to watch my kids and family grow. I am blessed with another day and i plan to take advantage of it. Hang in there friend! It might not be our ideal life choice, but it's still life just the same.

Hondo's picture
Hondo
Posts: 5927
Joined: Apr 2009

I will be going to the Mayo Clinic on the 18th of this months, I just hopeand pray they can find the problem and get me back to normal again.

Take care my friend and my God bless and be with you in your walk with him

luv4lacrosse's picture
luv4lacrosse
Posts: 1409
Joined: Jul 2010

i am just 2 weeks post and the worst side effect i have are the constant streaming secretions. They are thick and require a suction machine to clear. I do not sleep steady through the night. I do not have much pain, other than a really bad sore throat, but I am also still on fentanyl. I seem to be gaining 1-2 lbs per week with the tube feeding. I also have bad ringing in my ears from the Cisplatin, but do not think I have actually suffered any hearing loss.

Some days are better than others, and I feel like I have some depression setting in. I used to be a big muscular guy at 240 lbs and now I am an emaciated looking person at 182. I hope eventually I can return to the gym and try to rebuild.

I wish a speedy recovery to all out there.

BEST!!

Mike

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

Extreme dry mouth, bad fatigue, constant pain in my neck with stiffness and limited mobility, tongue pain and tongue still feels 'scalded', tingling in hands and finger tips, stricture and trouble swallowing, and lack of sleep. Oh and my teeth are bad, and I cannot open my mouth very wide at all. Better stop now, or I might think of other stuff. Gotta love the new normal.

KristynRuth86's picture
KristynRuth86
Posts: 144
Joined: Aug 2010

Well I'm only about 8 days post tx, but I have thick stringy saliva, phlegm, sore throat, fatigue, EXTREMELY sore tongue, ringing in ears, stiff neck, nausea, and no sense of taste. Good luck to everyone on their path to recovery.

timreichhart
Posts: 195
Joined: Aug 2010

Only thing I am dealing with right now is dry mouth and for while I was dealing with numbness in the feet and hands but now its going way. I have energy to do stuff during treatments I really didn't feel like doing anything and my taste as came back and have been eating for the past 3-4 weeks now.

Army_Guy's picture
Army_Guy
Posts: 53
Joined: Oct 2010

I completed a rigerous treatment protocol for 7 weeks: radiation twice daily and chemo infusion once a week. I am very lucky. I completed the treatments on August 12th;feeding tube out Sep 28th and back to work right after Labor Day. I don't have any significant pain although my ears ring from the Cisplatin. My biggest challenges are dry mouth, lack of taste buds, and lousy sleep. The taste budss are coming back and at least things no longer taste like dirt; most of what I can't taste right now has to do with "sweet". For instance BBQ sauce is okay but lacks that certain sweetness. Most of the sleep problems can be attributed to the fact that I drink 4 to 5 16 oz. bottles of water a day in addition to 1-2 cups of coffee and the occasional glass of iced tea; hence I'm up peeing 3-4 times each nite. But things aree getting better. Just be patient as it all seems to be finding its way back.

We are blessed to be alive.

Dave

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

James,

I have had most all of those side effects that you have mentioned. Through time, most if not all have past in the last 16 plus months since I finished treatment.

Tingle = Neuropathy
Electricity = L'hermitte's
Ringing = Tinnitus

The fatigue, stuffiness and dry mouth or lack of saliva are all common symtoms for us as well.

So you are pretty much right inline with the "norm"....

Most also get the swollen glands under the neck "Turkey Neck" from the fluids inability to drain through the lymph system like before. This too will minimize or disappear with time.

Keep on pluggin away, you'll start to notice improvements over the next several months.

Best,
John

rush1958's picture
rush1958
Posts: 201
Joined: Jul 2010

James,

I'm about 4 1/2 months out of treatment. BOT surgery and 41 lymph nodes removed in April. 33 Rads and 3 rounds of cisplatin completed in the latter part of June.

Side effects can be both negative and positive. I've experienced both.

On the negative side:

My saliva function is not what it once was. It is improving, but I usually need a sip if water to get down most breads. Taste has returned, but the taste of "sweet" fades pretty rapidly. My left shoulder tends to ache in the evening and at bed time. It's nothing aspirin can't handle, but I've been told it is a lingering side effect of the radiation.

I experience the tingling sensation up and down my spine and legs if I bend my neck downward sometimes. For me it's not really a negative. Call me twisted, but I actually think it's kind of cool.

On the positive side:

I've had several doctors tell me that I've probably added anywhere from 7 to 20 years to my life. When this started I was obese, drank too much, didn't exercise, was stressed out, was a type-2 diabetic, had high blood pressure, high chloesterol, high triglycerides and had used chewing tobacco off-and-on throughout most of my adult life.

Now I'm 100 pounds lighter than I was a year ago. I don't drink or use tobacco. My high blood pressure has disappeared. My blood sugars, chloesterol and triglycerides have all returned to normal ranges and I don't take any medications anymore. I walk a couple of miles everyday. I eat healthy. After a cancer diagnosis, I realized that there really wasn't anything going on in my life before to get stressed over - it was all small stuff....

Although it is barely visible, I also have this niffty little scar on the side of my neck as a souvenir.... that meant I didn't have to buy the T-Shirt.....

Who knows what life will throw at you, but I know I feel better than I've felt in years. Sometimes God has to do something to get your attention. In my case he used a two-by-four, but "I get it" now.

If the only negative effects I have are what I have listed, I have nothing to complain about.

Rush

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

Rush,

What a great outlook dude! Now that's inspiring to newbies and old timers both. Keep it going!

Greg

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

Great attitude, Rush. I'm on a trial period now off diabetes medication. My blood pressure and cholesterol levels have improved, too. Keep doing well.

luv4lacrosse's picture
luv4lacrosse
Posts: 1409
Joined: Jul 2010

Rush, what a great post. I too have lost 65 lbs and without the stress of workright now, my BP has been normal for the first time in a long time. I will also curb way back on the alchohol if not quit all together.

There are some good things that come with Cancer.

Best of luck my friend, you really inspired me tonight when I was having a not so good day.

BEST!!

Mike

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

Almost 8 months past treatment. Taste is almost normal (no chocolate ice cream taste and sweet often fades pretty quickly - except non-ice cream chocolate which seems to have heightened taste now); good enough for me. Saliva continues to improve (still have to drink lots with food, but less than early post-treatment; don't need as much water away from the table). Tingling/numbness in feet still there, but improved; no longer have it in my hands. Energy levels are greatly improved - still get hit with sudden fatigue, but only occasionally. Can eat most things (like almost all here, I have issues with "solid" meats and breads and dry foods). Ability to eat spicy is improving, but I haven't seen progress in about a month, I think. I couldn't eat catsup a few months ago - now I can eat mild salsa. Pain was completely gone (except when eating certain foods); now I have a mild sore throat again - assuming it's non-treatment-related). If not for bathroom breaks, I could sleep through the night now. PEG is gone, and enough head hair has returned so I look "normal" (skin on outside of neck healed quickly). Cancer-paranoia has greatly decreased, but visits from time to time. I have less time completely "in the moment", but it's still a lot more than pre-diagnosis. Hoping we all do well just as much as I did the day treatment ended.

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

9 months out, breathing isn't the best, but i get by, phlem hangs in my throat at times, especially after getting up, feels like lard in my throat that has formed, but effentually goes away throughout the day, i feel like there is a hole in my sinus cavity, wierd like a passage of fresh air on one side of my face, stairs are hard, and i sit for a few, then get going again, I sleep alot , or have my feet up, there like rubber bands at times, pitiful to be like this, sorry, I got a B 12 shot last week, Doctor is checking my Thyroid, we think may radiation overdose damage, WHAT A SURPRISE!!!...prostrate as well, figured we might as well drag the bottom in as well. Only meds I am on are Hydro for back pain, and nasal spray, also for the shrinking the prostate, It sounds like alot, I get tired of this, but I need to know, I was finished January 28, 2010 with rads and chemo, I had a surgery..when is my outdate of the cancer itself? The doctor told me surgery, i heard it was chaemo and rads...Hey Kimba , Sweet, Pam, James jump on this one and help me out.Thanks Dennis

james chambliss's picture
james chambliss
Posts: 70
Joined: May 2010

I don't know, my doctors have not told me the cancer was gone. I tell myself that it is and that is good enough for me. The ENT is keeping and eye on it. Other than that, i don't know when they say. "IT'S GONE" Someday i am sure they will

James

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