Scary - shaking may be activity tremors from 5FU cerebellar damage.

[SEWHAPPY]

Went to me pre-chemo Onc appointment this morning - #5 FOLFOX was scheduled for tomorrow. I mentioned that I have had some intermittent shaking of the hands. Last Saturday while attempting to eat a rice bowl I looked like an old drinker with the DTs - my hand shook as I tried to get the fork to my mouth. It was enough that my sons noticed it and commented on it. I have also noticed some shaking when I was holding my phone.

Well Onc was concerned, saying that was not common. She did some research and thinks it may be "activity tremors" which are a sign of cerebellar damage due to the 5FU. If that is the case, then we have to stop chemo.

Onc said I would need brain MRI and neurologist consult. She warned me that neurologist can take time to get in, but that she would try and pull strings. Well she got me in later today!!! Not sure if that is good or more scare. MRI scheduled for the 7th.

Any one have any ideas or experience on this? There are a few mentions of shaking on the forum, but nothing that seemed to be a big deal. Thanks all - I am calmer for just writing this message out. Blech.

[LPL]

Hi SEWHAPPY,
Sorry to hear about your problem, I hope you will get answers to why you are getting this shaking. I thought I read something similar here not so long ago and searched.
Have you read this thread? viewtopic.php?t=56601

[SEWHAPPY]

thanks for the link - I think that sounds different than my situation though. What concerned the ONC was that the shaking does not occur when I am resting. It occurs when I am doing something like gripping the phone or moving fork to mouth. Apparently that is different, as it is involved in an activity. Too weird!

[stu]

Sorry to hear that . A kind of intention tremor. It does sound as though your oncologist is being thorough.
I wish you the very best with the MRI ,
Stu

[Beckster]

Went to me pre-chemo Onc appointment this morning - #5 FOLFOX was scheduled for tomorrow. I mentioned that I have had some intermittent shaking of the hands. Last Saturday while attempting to eat a rice bowl I looked like an old drinker with the DTs - my hand shook as I tried to get the fork to my mouth. It was enough that my sons noticed it and commented on it. I have also noticed some shaking when I was holding my phone.

Well Onc was concerned, saying that was not common. She did some research and thinks it may be "activity tremors" which are a sign of cerebellar damage due to the 5FU. If that is the case, then we have to stop chemo.

Onc said I would need brain MRI and neurologist consult. She warned me that neurologist can take time to get in, but that she would try and pull strings. Well she got me in later today!!! Not sure if that is good or more scare. MRI scheduled for the 7th.

Any one have any ideas or experience on this? There are a few mentions of shaking on the forum, but nothing that seemed to be a big deal. Thanks all - I am calmer for just writing this message out. Blech.

I would think it would be more oxi related. If it is for 5/FU, ask if you can take the pill form. Also, I have 2A with 2 high risk features. With that said, I have been researching and going to ask my oncologist about testing my tumor with the Oncotype DX test for recurrence. Apparently, some of the "high risk" features are subjective and qualitative. I am telling you this because if you can not take the chemo anymore, you might find out through this test that you are not truly "high risk."

I wish you the best...let us know how you make out.

[hawkowl]

I developed a worsening tremor after FOLFOX but my oncologist feels this is more likely oxaliplatin related. Note that I also have disabling peripheral neuropathy as well as autonomic neuropathy affecting my GU system and interfering with motility of my entire GI tract.

Neurological consultation would be a great idea

[recruiter]

I suffer from genetic benign familiar tremor, and have been treated for that for years.

There is no question the cancer treatment made it worse.

[dbrr]

My twelve chemo infusions, oxaliplatin, etc, ended in Nov 2010. My hands still shake, not all the time, fortunately, but enough to be annoying and the spastic twitching in my hands makes both writing by hand and using touch screen devices very difficult. Perhaps you can skip the oxaliplatin which, from my own experience, was certainly not my friend and has been the cause of a lot of issues with my neurological system. Before chemo I had no shakiness, but beginning with the first infusion many side effects began. My onc did say she had never seen anyone react as badly as I, so it is important to understand that my experience probably won't be yours. I just wish I had never continued after that first infusion.

[SEWHAPPY]

Thanks all for the supportive replies. I had a really good appointment with the neurologist yesterday - he put me through about 40 minutes of different types of testing, which was very interesting. He concluded that I have none of the other symptoms of damage to the cerebellum - slurred speech, gait problems, difficulty reaching target (finger to nose, hand to glass, etc). I do have some minor tremor in my hands and head but he thinks I either had it before and/or it is stress based from the difficulties of chemo. Could also be blood sugar issues, so I will probably need to test more than just the few days after steroid infusion. I felt much better! We are going to go ahead with an MRI of the brain later today to be sure and I will meet with the neurologist again in 3 weeks to be sure that the next round of chemo does not make tremors worse. Such excitement. I swear I have used more healthcare in the last 2 months than the last 10 years!

[Ron50]

When I was having chemo , a long time ago , My onc gave me the pre chemo check list and one of the items that he stressed was to tell him immediately if I had any problems with balance or coordination . He explained that in some cases the 5Fu can have a serious impact on the cerebellum. The damage it can cause is not reversible and chemo must be halted immediately. Fortunately I had no side effects of that nature but I was blessed with a careful onc who made me aware of all of the possibilities associated with chemo. Ron.

[PainInTheAss]

I had bad tremors in my calfs where my legs would feel like they were vibrating. My hands would freeze in these weird positions that I called "zombie hands" and I had some shaking, too. I still do here and there, but not bad. Sometimes my phone will shake when I'm holding it a certain way. It's weird, but doesn't seem to be progressing. While on chemo, my Onc put me on Ativan and it helped a lot with these physical symptoms.

[aja1121]

My husband had some episodes of severe hand tremors while on Folfiri - like in your case, it was most noticeable when he was eating. It went away after he completed treatment.

[SEWHAPPY]

Yay! Brain MRI came back with no clinically significant findings., so i am good to proceed with Folfox #5. I will meet with neurology again in 2 weeks to be sure tremors are not worse. I am glad my onc is careful, but the roller coaster does get old.

[LPL]

Great News ! So happy for you

[dianetavegia]

My chemo side effects remain and some got worse a year or so after chemo ended. I have 'tactile allodynia' in my lower legs. I had a period of time where my toes would curl under but that has stopped. I also have tremors in my left hand.

I have Chronic Disease PTSD, which has been treated now for 11 years and is under control. I also still have neuropathy in both hands and ankles to toes. That has improved because it was upper thighs to toes.

After chemo ended I mentioned some side effects to my onc who got very upset. He said if I 'ever took FOLFOX again, I'd spend the rest of my life in a wheelchair.'

My chemo ended 12 years ago this coming August.