Long term chemo side effects? Even after done?

[tytiff]

Tyler broke a part of his filling and had to have it refilled. Then the day after, his tooth was really sensitive. He thought he might have broken the tooth entirely, not just the filling part. It was quite painful. He returned to the dentist and he told him that the tooth was fine. The dentist believes these tooth issues, along with dry gums, are a side effect of chemo. Ty said he had not had chemo in at least 6 mos. He said they keep showing up for a while.

Here's the part where it gets a little weird. He has been having neck and elbow pains for at least 2 mos. His elbows will swell and hurt badly off and on for a while. Yesterday, he said he slipped a little in the shower and hurt his knee. It hurt for quite a while. He said it felt loose and not stable. He doesn't believe he "hurt" his elbow and can't think of a time that he hit it, extended it or traumatized it. He has tried to let it rest for days with no relief.

My question to everyone is: Has anyone else had these types of long term chemo side effects? Any ligament issues with minimal exertion?

Your input is greatly appreciated. Thanks.

Tiff

[SkiFletch]

Tough to say Tiff, there can be lingering/permanent neurologic side effects from Oxali though, possibly even playing with Tyler's "feel" of his elbow. As for the tooth problems, yeah that makes a lot of sense. It takes a long time after chemo for even the soft tissues of the mouth to return to normal, and the stunted growth rates of various things in there can be longterm.

[Rick7]

Tiff,
I am @18 months out from Folfox.
I am having a lot of trouble with my teeth. Before Chemo not so much trouble.
I also broke an old filling, and have had slight gum bleeding. Also, it seems to take a really long time for the sensitivity to go away after dental work. I think I have had 5 cavity fixes since Chemo.

I also had a knee problem, probably like his elbow. I had to be very careful going down stairs. It was like there was no front joint there, just bones grinding. That has cleared up.
I still also have pretty bad Neuropathy.

Anyone else I mention these things to says "You're just getting old".

Talk to your Dr/Onc about these problems.
Good luck,
Rick

[Gaelen]

One thing that both chemo and radiation do is weaken bones, which means that people who've been on those treatments, especially long-term treatments, need to have bone density tests, take their calcium/vitD bone health supplements, and keep an eye out for the development of bone-related secondary things like arthritis and osteoporosis.

Has Ty had a bone density test? It's a really simple test, but it can point out areas of concern.

According to my dentist, chemo wreaks long-term havoc on your teeth and gums. I had to have a wisdom tooth removed, and since it was adjacent and tightly up against two molars, they had to come out, too. In the process of removing them, my dentist found all kinds of other mouth issues.

Chemo can be the gift that keeps on giving, when it comes to our bodies.

[BrownBagger]

I had about 5 crowns and some other work done this past spring (stuff I'd put off during tx), and I have noticed that the heat/cold sensitivity is a lingering issue. Not sure if it's related to chemo or not. I also have some enamel erosion on my front teeth that I blame on chemo, since it happened during same. They say that a dry mouth is really bad for your teeth, which is one reason why meth addicts and other amphetamine users tend to have rotten teeth. I sure got dry-mount during chemo, especially at night. I'd wake up all puckered up and worry about my teeth.

[Ivona]

Next month it will be 2 yrs since I finished chemo. I still have on/off tingling in my feet and hands, and yes, my joints ache. I try to exercise regularly and it does help...somewhat. Like Gaelen said....it's the gift that keeps on giving....

[wwroam]

I am now 3.5 years out from chemo, and still have lingering PN in my feet. My hands are pretty well OK.
At about the 12 month mark I started to develop skin cancers , and mostly squamous cell carcinomas at that ( about and a couple of basal cell carcinomas. These seem to have run their course, nothing new for about 12 months. I have had 2 teeth ( not just fillings) almost disintegrate , requiring bridging crowns and 2 other teeth requiring crowns. This week I have accepted that my hypertension requires medication ( but I have had this before chemo) but I am now also on medication for Type 2 diabetes. I am undecided on this one. At 188cm and 97kg, I would say that while I am overweight, I am a long way from obesity. This may well just be part of the aging process ( 61 next month).

[Ron50]

I am 13 and a half years out from st3 c colon ca. I did not experience neuropathy during chemo most likely because I was on a very old regime of 5fu enhaced with levamisole. Since ca I have suffered acute pancreatitis and lost my gallbladder. I have been treated for severe arthritis for the past eight years. I lost 6 teeth during chemo,not removed but root canals.I have since lost another two to methotrexate and one to arava. All the new arthritis drugs seem to be powerful immuno-suppressants. About five years ago they found protein in my urine. You can lose up to 150mg a day but I was up to 3200 mg. They decided my protein-urea was a l/t side effect of chemo and colonoscopy preps and that my kidney filters were scarred. I had a horrid 18 mos on high doses of prednisone but it did not help.The last 3 mos of the pred treatment was to wean me off the stuff. I then went onto methotrexate. It helped my arthritis(by this time they decided it was reactive psoriatic arthritis,again auto-immune),.It did not help my neuropathy and I was trialed on lyrica and then endep. Neither helped. Strangely ,whilst on methotrexate ,my protein loss dropped to 350mg. That is weird because there is no cure for scarred kidney filters. I had to go off meth after 14 mos as it was ripping into my stomach(similar to 5fu but milder). I was put onto arava. It immediately caused my liver grief and it has taken 5 mos for the side effects to abate. At this point my neuropathy is worse than it has ever been,I cannot breathe at night and often wake up in panic because my lungs don't seem to be working. I can hardly walk or use my hands because of the joint pain and my protein loss has risen to around 1500mg a day. I have an appointment with my nephrologist next week(earliest I could get). He strongly suspects that all of my neuropathy ,arthritis ,breathing problems and protein loss are not separate problems but symptoms of an as yet un diagnosed variety of vasculitis. My rheumatologist is an ex oncologist and he believes that levamisole was a drug that should never have been used on humans and that it may be responsible for the destruction of my Immune system. I don't know ,I only know that you can't change whats done. The treatment for vasculitis is methotrexate and imuran. I refuse to ever touch prednisone again. Vasculitis is a bit like ca they are not sure it can be cured ,they try to put the patient into remission. I had the first of what may be numerous skin cancers cut out of my cheek last week. They thought it was a standard basal cell but it turned out to be a micronodular form which is as aggressive as bbc's get. Apparently meth is not to bad for skin ca's but it does make you sun sensitive . Imuran is suposed to be really bad for skin ca's so that is just another area for vigilance.
It is kind of funny I used to think of my survival as another year farther away from ca now I am starting to see it as one year closer to the end. I really do hope that my experiences are not the norm for long term survivors and that some have a happy and healthy survival. Ron.

[tytiff]

Thank you all for your input. I appreciate it and have sent the thread to Tyler for his perusal. I hope he finds some solace in it that it's not just him. He has an appt in August after our family vacation (first one ever!) and does not wish to see the dr beforehand. I know why and I'm sure you can figure out why too. My real concern is his fatigue that is attacking him, more so than normal. I just have to be patient, because in the end it's his decision. And I respect that. I can only do what I know is helping him. I will definitely ask about the bone density test at the appt. Thanks for listening folks.

Tiff

[patricia]

My chemo ended mid-February, 2011. Last week I noticed significantly increased pain in elbows, knees and my left thumb became unusable - the joints spontaneously refused to bend in the thumb and it is so swollen. Was diagnosed with psoriatic arthritis about 10 years ago and it was under total control using Enbrel which had to be stopped because of cancer dx. Joint pain was gone during chemo treatments, but 6months out it is now the worst it has ever been. Chemo side effect or other disease (psoriatic arthritis) reasserting itself? Combination...?? Started methotrexate injections yesterday. This is awful. I mention all this because sometimes we have more than one disease and it is very confusing to diagnose/treat.

[CaliforniaBagMan]

I have significant joint and muscle pain following chemo and radiation.

During Summer when I swim and get exercise, I also get more healthy. The joint and muscle pain reduces as my fitness improves, except in the beginning part of getting in shape. Without a hard workout program, I have a lot of aches and pains ranging from mild to moderate or occasionallly severe. I believe all of it was amplified by chemo and rad.

[Bev G]

I've been off chemo for four months now. I think all of my teeth hurt, and I perceive that a number of them feel loose. I am so dentist phobic and have had zillions of dental issues I am just too reluctant to go and see what's up. I have many, many joint aches that I never had before, but I am 57 so maybe it's just aging. I've had severe tendinitis a couple of times in my hands (long before cancer) that lasts for a few months (where my fingers get stuck down, and I can't make a fist, etc) Right now when I try to make a fist with my left hand, I can except my middle finder won't bend and stays up Makes me laugh so I don't worry about it. I still have eye pain from the chemo. The gift that keep on giving is right! Oh yeah, and I still take a two hour nap almost every day.

I hope and pray everyone will start feeling better. Ron, your story makes me so, so sad for you.

Bev

[carrieann]

I am 18 months post chemo and for a long time my teeth felt 'loose' but otherwise, my teeth and gums were in good shape. Now my hips on the other hand, not so much. My husband and I joke, I now have one 'trick' hip that will lock up and I am down (a few weeks ago i was riding with some friends and stopped to rest, I put my foot down and my hip wouldn't hold and down I went). They are so much better than they were after radiation but still some days, it is bad. I am a runner/mt. biker/mom to 2 very active little girls so I stay pretty active but my doctor has recommended PT on top of that to help with strengthen my hips-I have lost major range of motion and now have arthritis-they feel I am headed for hip replacement (I am only 40!) and before chemo/radiation I had no hip issues. They also said i should stop running, I have cut way back, but I told them cancer took enough away from me so until i actually can't do it any more-I was going to keep running. Besides a bionic hip would be cool (so my kids say ).

So, yes chemo and radiation are the gift that keeps on giving!

[nbrandt]

Tiff,
I have terrible nueropathy. Some say it gets worse before it gets better. One month out sprained ankle walking on uneven ground, Two months after completing Folfox, I had a fall in the shower which resulted in a severe contusion to the back of the head. Still felt lucky since no broken neck or concussion and grapefruit size contusion now down to walnut size at the back of the head. My foot just wasn't there as I stepped out of the shower. When I called my onocologist he said nothing to do with the neuropathy but to be careful.
Nueropathy is terrible in my hands and feet. I am hoping as my finger nails which have 1/4 inch new clean growth grow out that the chemo is leaving my body and the nureopathy will improve.

Fuild retention and aches. Eye pain and eye infection which the Opthamologist said is chemo related due to a compromised immune system. Teeth sensitive and bleeding better but still there. Hopeful that this will improve.

I have my 3 month check post chemo next week and I have many questions for the onocologist. Also feeling a little anxiety for the blood tests and scans.

Prayers for you and your husband,
Nbrandt

[Karen32]

This has been a very informative and interesting thread. I am currently 6 weeks past my last treatment of Folfox. I finished all 12 rounds. Some side effects really only started following the end of treatment. What I find so interesting is that the things I am experiencing I thought might have been related to chemo, but I actually was worried i was experiencing something entirely new! After reading this thread, I now believe it is all related to the dreaded chemo.

I have had severe joint stiffness and sometimes even pain since completing treatment. Some mornings, my ankles are so stiff I am concerned about falling when I get out of bed. My balance also seems compromised. When showering, I have to keep one hand or elbow touching the wall. And it is never safe to close my eyes when standing. I might pitch over!

The neuropathy has definitely increased since treatment ended. My hands always feel cold (but not to the touch) inside and fluctuate between extreme pins and needles to complete numbness. My feet and right leg have also experienced increased neuropathy, but thankfully not to the same extent as my hands.

As of now, I have had no dental or eye issues. Here's hoping it stays this way!