Long term effects of treatment

kristasplace

I think this subject might be of some interest to those who are currently in treatment, and those who are out of treatment will probably relate to some, if not all of it.

My last radiation treatment was October, 2007, and my last chemo (Folfox) treatment was April, 2008. I've had four to seven surgical procedures; some of them coupled together. The last one was to remove a lung lobe in 2012.

The radiation treatments caused bone degradation with -3.9 on the osteoporosis scale, particularly at the radiation site that caused insufficiency fractures in the tailbone and spine. The bone doc warned me that bending over to pick something up could break my back. Though I've been able to reverse most of it and am now considered to have normal bone density for someone my age (47). It's still very difficult to bend down at all, but one of my docs thinks the pain is from neuropathy. It feels very much the same as the bone fractures felt, so I'm not certain what the pain is from. The radiation has also caused what seems to be a permanent cystitis that makes urination difficult and painful, but this comes and goes. Lately it seems to be getting worse and causing frequent bladder infections, but it might be because my bowels hijack my bladder and won't let me pee.

The chemotherapy caused neuropathy in my salvary glands, both feet up to the knees (worse on the left side), and both hands. The effects are numbness, sensitivity to heat and cold (different sensations for each), painful tingling, unable to grip or write with a pencil very well and frequently dropping things I thought I had a good grip on. If I touch something the wrong way it can feel like my hand was hit with a hammer. During chemo I couldn't drink anything that was a degree above room temperature or my throat felt like it was closing shut. When I ended chemo, this sensation stopped, but for some strange reason it happened again earlier this year. My mouth will still tingle and feel a little numb once in a while when I drink something cold. In moments of severe stress, I've lost the feeling in the left leg almost completely, and it's always difficult to know if that leg is going to function correctly when taking a step. The neuropathy seems to be getting worse as the years go on, but it also seems to change. The effects on my salvary glands aren't as bad as they used to be, but the legs and hands have gradually gotten worse. Sometimes there are shooting pains down the legs that start in the hips, but there's a shot I get every few months that has controlled a lot of that, thank goodness. It was super annoying!

Chemo also caused the strange brain fog where sometimes I don't know where I am in a city I'm very familiar with. There are short term memory losses that still happen, though I can remember numbers again (I used to be able to remember numbers up to ten digits long after only seeing them once). That ended with chemo, but I've found I can do it with certain numbers up to seven digits long, and particularly if they have letters in them. I barely remember anything that happened during my stint with chemo, like movies I'd seen, or conversations I'd had, or places I'd been.

The first surgery to remove the primary tumor and gall bladder caused an anastomotic stricture in the colon that causes abdominal cramps similar to severe mentrual cramps, and makes going to the bathroom challenging, at best. Incontinence is an issue, but normally I can tell right away that there's going to be a problem, and I can prepare for it, but there have been instances of it happening and not even being aware of it. Eating anything is a huge risk that I may not be able to leave the house for an hour, or possibly the whole day. Makes running a business challenging, but I don't eat much, if anything, in the morning until I'm finished with my morning rounds. 

I don't have much feeling left along the incision site, or around much of my abdominal area. When I touch that area, the sensations are strange and sometimes I feel it somewhere else. I discovered the danger in this when I was using my heating bad to relieve the pain of the cramps. It must have slipped out of its cover while I was sleeping and burned two holes in my skin. I didn't even realize this had happened until I was showering the next day and felt two, huge blisters. They treated it with silver oxide and had me come in every couple of days to have it cleaned, but it took months to heal. 

The lung removal site still has a lot of issues, too. Even after four years, it's painful and "weird" feeling, and the pain spreads across my ribs to the other side of my body. It feels like the muscles and ligaments haven't healed correctly and if I move the wrong way, the muscle will charlie-horse.

The takedown incision site itches inexplicably and sometimes it throbs or hurts. That surgery was in 2009. The same is true of my port site, though it always itched, even when it was in there.

Though a lot of the after-effects of treatments that I suffer ffrom aren't consider 'usual', I want to emphasize that regardless of all these issues I live a fairly productive and functional life. There are days when I can't do anything at all, but I'm a homebody anyway and always find ways to keep my mind occupied. When I do leave the house, I've learned to know where the bathroom is anywhere I go, and I've learned how to live with a certain degree of pain. I've gotten so used to living with that pain that when I'm anesthesized for a procedure, it isn't until its gone that I suddenly realize how much pain I normally feel.

I used to think if I had it to do over, I would've requested bone meds while I was doing radiation, but I'm glad I didn't because some of those have been suspected of causing other cancers. Through regular exercise (walking), and cutting WAY back on my dairy intake, I've been able to gain a lot of my bone mass back naturally. I wish I could find something that would reverse the neuropathy, but I haven't yet. Our bodies are truly amazing, so I definitely have hope that will happen!

Thanks for reading and hugs!

Krista

Trubrit

We live with it

Sounds like you have allot of 'reminders' everyday of the Cancer journey you have been on. 

I too have a list as long as your arm, but for the most part, I have learned to live with them, and happy for the life that I have. 

My biggest chemo gift is definitely the neuropathy. I have it in both legs up to mid calf. It has improved, but it is not normal by a long shot. It is not painful, just a weird sensation to live with.  

I do have damage to my tongue and salavary glands also. I had Thrush, constantly during chemo and my tongue never regained that lovely rosy colour. It is white, and really quite unappealing. I don't poke my tongue out at anyone anymore. HA!  I have problems salavating at night, which causes my mouth to dry up and I wake up to drink constantly, which causes me to wake up to pee constantly. Yeah, I wake up allot at night. 

Radiation caused Vaginal stenousis and I am no longer able to have sexual intercourse. Thats a pain, because I really did like sex, and so did my husband. I've tried to use a vibrator to stretch things out, but I damage really easisly, as the skin there is paper thin.  Its certainly not a side effect anyone ever told me about.   I finally went in for a PAP this year, and my NP was shocked at how everything looked and felt. She had not ever seen such damage before. 

Brain fog comes and goes. Sometimes, I'm not sure if its chemo related or age related. One thing that I know is chemo related is when I am talking and I suddenly loose the thread completely. I stop dead in my tracks and everything looks blank. My family and friends understand now, but it is embarrassing when talking to someone who does not know my Cancer history.  It has happened at work, and I am very grateful for a boss how is understanding. 

Bathroom trips can be very interesting. My other job is up in the canyon, and I know every hidden spot for emergencies. I'm getting to know what foods cause multiple bathroom trips, emergency bathroom trips and non-bathroom trips. 

Its a wild ride! 

Still, I'm happy to be alive and kicking. 

It is interesting (and sad) to read others experiences; it is also good. I had never heard of anyone else having problems with their slavary glands before. Just thought it was a one off for me. So thanks, Krista. 

SUE

 

kristasplace

You're welcome, Sue. I know

You're welcome, Sue. I know how comforting it is to know there are people who understand what we're going through.

I was warned about the possible vaginal effects the radiation could cause and that it would sterilize me. I was thirty-eight at the time with no children. She offered to have my ovaries moved out of the line of fire, but I decided I didn't, and probably shouldn't, breed. lol. I had my last mentrual cycle the month they started radiation, and I haven't missed it one bit! I was lucky I didn't get the vaginal issues. I seemed to always get the rarer side-effects rather than the ones they expected. It was rare to get colon cancer at the age I was at the time (less than 5%), but now, unfortunately, it seems a lot of people are getting it under forty, and even under thirty! I had an ex-boyfriend who's nephew got it when he was one year old! It's just crazy.

The neuropathy is definitely the worst thing to deal with. It causes me to fall a lot and I'm surprised I haven't broken anything, even with the bone density problem seemingly fixed.

Some bodily damage is a lot harder to fix with natural remedies than illness is. I wish I had been braver in the beginning and treated myself with diet earlier, but it was a total learning experience I couldn't have received any way other than going through the process. I can't and don't regret anything I did to treat my cancer, though I do wish I had refused the Folfox.

Be well!

Krista

 

ron50

It is indeed a wild ride.

        I too suffer neuropathy from the tops of my legs down and left hand. A neurologist diagnosed it at moderate to severe motor sensory peripheral neuropathy ,could not give me a cause so he dclined to treat me.My worst problems are auto immune. I have auto-immune nephrotic syndrome of the kidneys. Untreated I lose over seven grams of protein a day thru my kidneys. I take cyclosporine twice a day to hold off kidney failure. The cyclosporine has resulted in skin cancers. I have moderate auto immune hepatitis. Unfortunately one of the treatments they first tried for my kidneys was high dose steroids , I was on 75mg daily for around two years. I have osteo penia ,bone damage in my lower back and type two diabetes as a result. The treatment for the auto immune hep is a low dose of prednisone which I can't tolerate, it puts my blood sugars thru the roof. I have heart problems which they cannot dx. I have around 11-15 thousand premature ectopic beats a day. I suffer pulmonary and peripheral oedeema of unknown cause. It is con troled by fluid restrictions and up to 80mg of lasik diuretic a day. I take 1000mg of metformin a day for my diabetes. I take five blood pressure meds a day. My blood pressure rises and drops like a barometer and is never the same two days in a row. I lost my gallbladder after cancer. i often suffer bile salt malapsorbtion also known as bile salt diahorreah. I use cholestramine to control it when it is bad. My cancer operation renderred me impotent so I haven't had sexual function for nineteen years. I am now 66 , live on my own and still work though I am a lot slower at it than I used to be. Surviving survival is not easy , it takes a lot of work and you have to accept a lot of changes. Ron.

kristasplace

Wow

Hi Ron!

It seems like your problems have intensified since the last time I was here. I'm so sorry for that. It sounds like a lot of your problems are most likely from cancer treatments, and I'm surprised your doctors won't at least give you that. I don't like any of the medications they give for neuropathy, but the shots in the back have helped a little. The doc that gives them to me is a pain management doctor (neurologist). I don't know if you have the same kinds of docs in Australia that we have here, but I would recommend seeing one if you can.

Also, if you can, try to get a hold of this movie: "Fat, Sick and Nearly Dead". You can probably stream it through some media, or it might be on youtube. It's absolutely amazing and motivated me in the ways I needed that really helped me, primarily with cancer. The man in the movie didn't have cancer, but he had all kinds of other serious health issues. I know that juicing celery lowers blood pressure. 

As uncofortable as I am, it must be really tough for you. I try not to give into it and I take pretty good care of myself, but some things haven't healed as much as some of the others. If I could juice all the time, I would. It gives me terrible bowel issues. The raw diet has given me the same results (getting rid of mets), and it's easier for me.

Best wishes for some relief,

Krista

 

lizard44

Trubrit said:

We live with it

Sounds like you have allot of 'reminders' everyday of the Cancer journey you have been on. 

I too have a list as long as your arm, but for the most part, I have learned to live with them, and happy for the life that I have. 

My biggest chemo gift is definitely the neuropathy. I have it in both legs up to mid calf. It has improved, but it is not normal by a long shot. It is not painful, just a weird sensation to live with.  

I do have damage to my tongue and salavary glands also. I had Thrush, constantly during chemo and my tongue never regained that lovely rosy colour. It is white, and really quite unappealing. I don't poke my tongue out at anyone anymore. HA!  I have problems salavating at night, which causes my mouth to dry up and I wake up to drink constantly, which causes me to wake up to pee constantly. Yeah, I wake up allot at night. 

Radiation caused Vaginal stenousis and I am no longer able to have sexual intercourse. Thats a pain, because I really did like sex, and so did my husband. I've tried to use a vibrator to stretch things out, but I damage really easisly, as the skin there is paper thin.  Its certainly not a side effect anyone ever told me about.   I finally went in for a PAP this year, and my NP was shocked at how everything looked and felt. She had not ever seen such damage before. 

Brain fog comes and goes. Sometimes, I'm not sure if its chemo related or age related. One thing that I know is chemo related is when I am talking and I suddenly loose the thread completely. I stop dead in my tracks and everything looks blank. My family and friends understand now, but it is embarrassing when talking to someone who does not know my Cancer history.  It has happened at work, and I am very grateful for a boss how is understanding. 

Bathroom trips can be very interesting. My other job is up in the canyon, and I know every hidden spot for emergencies. I'm getting to know what foods cause multiple bathroom trips, emergency bathroom trips and non-bathroom trips. 

Its a wild ride! 

Still, I'm happy to be alive and kicking. 

It is interesting (and sad) to read others experiences; it is also good. I had never heard of anyone else having problems with their slavary glands before. Just thought it was a one off for me. So thanks, Krista. 

SUE

 

Dry mouth at night

Sue, Have you tried sucking on ice  chips instead of drinking water when you wake in the night? I, too, was waking up several times during the night, always with a dry mouth and needing to go to the bathroom after drinking water. I'm pretty sure my dry mouth is caused more by sleeping with my mouth open than by chemo after-effects, so maybe it's very different from what you describe.   A month or so ago I began keeping an insulated mug filled with ice chips  next to the bed.  Now when I wake up with dry mouth I suck on an ice chip- it does the job without  making me feel I need to pee every time I wake up.

Grace/lizard44

Trubrit

lizard44 said:

Dry mouth at night

Sue, Have you tried sucking on ice  chips instead of drinking water when you wake in the night? I, too, was waking up several times during the night, always with a dry mouth and needing to go to the bathroom after drinking water. I'm pretty sure my dry mouth is caused more by sleeping with my mouth open than by chemo after-effects, so maybe it's very different from what you describe.   A month or so ago I began keeping an insulated mug filled with ice chips  next to the bed.  Now when I wake up with dry mouth I suck on an ice chip- it does the job without  making me feel I need to pee every time I wake up.

Grace/lizard44

Great idea

I will give this a try, Grace. Thank you!

SUE