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Posted

Hello, My mom is 59 year old with Non Small Cell Stage 4 lung cancer (non smoker).

She has been on Alimta for the past 11 months and has responded well. 2 weeks ago she woke up in the middle of the night with pain radiating down her shoulders/shoulder blades to her fingers. She has thumb paralysis on both hands and limited movement to her pointer finger on her left hand her pointer and middle finger on her right hand. The care team completed an XRay, CT of spine, spine MRI, brain MRI and spinal tap - all negative (which is great!). But no understanding or reasoning for the pain and paralysis.

Has anyone else experienced anything similar? Any ideas? Any suggestions to ask the care team about?

Thank you!

Posted

From the period of her treatment - 11 months - sounds like she is being administered Alimta as maintenance therapy (a good thing). I surfed around a bit and wasn't able to locate peripheral neuropathy or paralysis as a Alimta side-effect.  I wonder if she had Alimta in combination with another chemotherapy drug in her first line treatment.  Taxol (Paclitaxel) or Cisplatin often used in combination with Alimta often have peripheral neuropathy side effects.  If she had this, her current problem might be related to her first line treatment.  But hopefully her physicians would deduce this.  Wonderful news about the clear scans!

 

Stay the course.

 

Tom  

Posted

Hello,

Yes she had Cisplatin with the first 5 rounds.

The pain definitely seems to be neuropathy-ish but I cannot find any research about paralysis. It's very strange. Her Oncologist said she is 'stumped' and has not seen anything like it so I continue to search for information or others like her.

Thanks!

Posted

I had Cisplatin as one of my Chemo drugs, for about 6 weeks before I had surgery and repeated again after I had surgery.

One day walking the dog I fell stepping from the paved path to the grass.  Weird !    It turned out I had gotten neuropathy damage. 

The nerve damage caused my feet to think the change of pavement to grass was like falling off a cliff.

I generally don't "fall" down like that but my feet really don't know how to interpret changes anymore.  If a piece of sand

gets in my shoe, my feet panic and think send messages to my brain that I have maybe a piece of " glass" in my shoe.

Believe me I never wear high heels anymore.  I wear the same Schuler shoes all the time, maybe a different color.

The good news is I am still alive many years later.

 

Donna

Posted

Hi Donna,

Sorry to hear about the spill you took but glad things are going ok. It does sound similar to what my mom describes as her brain and thumb/fingers not communicating. Interesting.

I'm anxious to find her some answer/some similar situations where people have pushed on. We keep telling her joint are over rated! :) wonderful that you are doing well! Cheers!

  • 2 weeks later...
Posted

A lot of people on Alimta maintenance have reported varied, random, unexplained, temporary, aches and pains, some that sounds like muscle pain, some joint pain or nerve pain. I did experience more of the neuropathy you describe, particularly in my hands, feet and fingers, when I was on my first line treatment (carboplatin/taxol). It could be residual. I'm glad they thoroughly checked you out and there was nothing else going on. I hate to say it, but these unpredictable, never happened before side effects that appear suddenly, feel better, crop up somewhere else...it can be scary. Hope you can get some relief and some answers.

Sent from my iPad using Tapatalk

Posted

Any new news??? Just jumping back in here with some energy trying to catch up.

..

Sent from my U671C using Tapatalk

Posted

Hi,

I also was on maintenance with Alimta. Oddly, I suffered a heart attack after being on it a while. Her symtoms aren't typical of a heart attack but you never know. Maybe have it checked? I had to go off of it because Alimta causes bleeding. Long story.

Anyway,

Good luck!

Jen

Sent from my SM-T800 using Tapatalk

Posted

thanks for the input.... I think deb ahd some issues fora while but I think it was also some arthritis in the shoulder area... cortizone shot helped it some as I recall!!

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