Brooks (Just4brooks) checking in

Hey

I see you on facebook all the time, but it's nice to see you here, too.

 

*hugs*

Gail

oxaliplatin neurotoxicity and medical negligence

I was looking for the answer to the same question as yourself, and stumbled on to your post...in fact, I had to join this site to connect with you. My husband is suffering from many of the same issues you are, and he is crippled, as well, in fact, that aspect of this treatment may have him being in a more severe state with regards to the disabling mobility. He is almost 2 yrs. out from the diagnosis and has not walked for appx. 16 mos. He also was never told that this was a possibility, even though there were significant signs of damage that were reported earlier in the treatment process. He has been spared the problems with his bowels that you have experienced, at least so far.

I am anxious to learn more about your situation, and perhaps together, we can arrive at some sort of solution to an obvious violation of your body. Believe me, I do understand how you must feel. We don't enjoy much celebration here either. It's not as black or white as saying life or death. My husband was an active 61 yr. old that now has been reduced to a very depressed, homebound, invalid. It is way too painful to sit for even brief periods of time, so using a chair isn't the ultimate answer. He has not been able to drive or even leave the house without assistance...and then it is just to another medical appt. for well over a year.

Are you aware of the black box warnings on each individual vial of oxaliplatin? I have wrote and spoke to the manufacturer, but I certainly didn't expect to learn much from them. Our oncologist even refused to allow us a visit when all the side effects arrived that made mobility impossible. We were stunned, and completely clueless as to what was even happening, and no professional in medicine that practices locally seemed to have an answer either. You are the first person that I have ever heard of as having the same type of problems, and while I am very sorry for you, I don't think we are "crazy" anymore and definitly not alone. Perhaps the saying that finding strength in numbers can apply to us. When a person has been robbed of even the simple daily activities, it gives a whole lot of time for thought, and thoughts we do have.

Please reply at your convenience and never give up!

 

 

Oxaliplatin toxicity specifically -- lung damage

I had a reaction to Oxaliplatin and it damaged my lungs.  In fine print, it happens to 1/2 of 1% of the patients and I was one of the not so lucky ones.

I am 9 years cancer free, however, it appears the damage is progressing in my lungs, I have more scaring in my lungs.  It appears I will have to go on oxygen, at least in the short term.

Does anyone know of anyone experiencing the same lung damage?  If so, I would like to communicate with them. 

I have had neuropathy in my finger tips.  It isn't bad and I ignore it. 

Please let me know if there is anyone having lung damage from Oxaliplatin.

Thanks,

Survivor-9

 

 

Hi everyone / Neuropathy from Oxy

My hubby was diagnosed with stage 3 colon cancer in march 2008.  He had a re-section and 12 rounds of folfox.   He is cancer free.

He has so many issues with his neuropathy - it affects every part of his body.  He had to stop working in Jan of this year.  He is pretty depressed and pretty much housebound at this point.  We have tried everything we can think of and nothing is much help.

We wish the doctors would have explained things better in 2008.  We probably would have stopped the chemo in the 3rd round, when the neuropathy started.  

Thanks for listening!