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WoW!!!! the human slug!!!


schmaydee

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...just got ned 1-2 weeks ago....... ..but now my legs have "gone to sleep" to where i can no longer walk!!!!! Ha!!!! ....they gave me a 2 unit tranfusion last wednesday (helped my energy level a bit) but the numbness seems to be getting worse....

got an old bud who's a dr of pharmacy...he says there's a 5-15% chance of significant osteo/nuero damage that can be done by EFFEXOR....and i take lexapro (like just everybody else in the world) too....(crazy pills)..... and last but not least the Decadron...been taking that for 1-1.5 years 4mg/day.. ( i heard that it eats up some bone & thigh muscle etc).....nobody (Drs) seem to be worried that much about it...hmmm....?????

just feels like my feet and legs have gone to sleep..ya know....when i try to walk i look like a spastic retard...no-big.....

i dont care much about what i look like ....but i am concerned about being able to get around......

thanks for any advise/info..

..............s

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.........s,

Ask your RPh friend if one of your chemos could be responsible for your peripheral neuropathy. That is what it sounds like anyway.

There is another thing associated with the cancer itself that causes legs to go weak like you describe. Your onc. is not concerned????!!!??

You need to get more assertive with this........,s.

Yes, steroids do cause muscle atrophy. But, it affects the large muscles of the legs and butt before it affects the smaller muscles. At least that is what the N.P. told me. I am weak too but I don't walk spastically like a dork.

Getcher butt in there, Steve, and get some answers. This is NOT normal.

Cindi o'h

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yes cindy i agree..

...my knees and legs are very cold to the touch i'm using a heating pad on my feet to kinda stimulate circulation (and i think its helping)...some......earlier tonight i couldnt hardly make it walking around the bed (while i was holding onto the bed)...i'll pretty much will have to get an ambulance or something (hopefully covered by insurance) to get me to the Dr/hosp (and back??????)...and a wheel chair to get around in my apt....or something?????

....5-15% chances of "peripheral neuropathy" is what my pharmacist buddy said about the effexor as well as osteo and muscular degeneration....the only reason i take 'em is/was to help me get off of the dacadron.

back when i had my "first" remission...my onc didnt even scan my lower abdomen and wasnt going to scan again for another 2 months when i had a kidney stone (what fun!!!!)....and they found a 4-6 cm growth on my adrenal gland....wouldnt have been good to let that go another 2 months.

i dont think he's worth much of a crap....but he's close ... and really does pretty good since we had our last "talk".

the onc transfused me last wed and i feel better but the numbness is getting worse....

what is also related to cancer that effects legs....mets to the brain and spine etc....thanks a lot c&r....

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Hey Schmay,

I hate hearing about this new hurdle. I can't add to the personal advise given here, but I can send lots of prayers for you.

Have you a ACS or a NETS program in your area? Often they will provide wheel chairs and assisted transportation to and from medical appointments.

I've alsom seen circulation socks at the pharmacy. I bought these for my dad when he was immobile and he said they helped him alot.

Don't jump too far ahead with thoughts of brain or spinal mets yet. Talk to you doctor about those concerns, get scanned again. I praying for you that this isn't the case at all.

*Side note: I just met a woman a few months ago who is a survivor of 3 cancers. Breast, lung and colon. She is 78 now with no feeling in her feet at all. She has been in complete remission for almost 10 years and attributes her "feet condition" to the "poison" they "pumped" into her. (Her words)

and then she added, she'd take remission with numb feet anyday.

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..........s,

I have been trying to think about the name of the syndrome, it has been sitting on the tip of my tongue. After some rest I finally spit it out.

Have you heard of Eaton-Lambert Syndrome? Or Lambert-Eaton Syndrome? This sounds like it might be a possibility of what is happening to you.

Hope it is not though.

Cindi o'h

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Steve,

Try taking vitamin B-12 100mg per day. It helped me with my nueropothy from the chemo Taxol/Carboplatin. This is just a suggestion. Ask your doctor first though. I told my onc. about the numbness and she lowerd the strength of the chemo. Have had no problems since. That was 2 years ago, ASK your onc. first B-4 taking this vitamin.

Prayers and Blessings,

Karen

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i think the eaton-lambert thingy nails it......i have just about all of that....at least i'm gonna send what i've found on it to my GP and Onc....gratzi (all)....

oh yeah! ....what in the world do you do if when you cant make it up the stairs anymore (to get to the Dr's etc) anymore?.....i know there are companies that do that.....my ins said they dont pay for "non-emergency" transportation....hmmmm...any ideas? .....s

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Hi ..........s,

Call your buddies to see if they can help? A neighbor? Local chapter of American Cancer Society?

Ask to talk to the doctor's nurse to see if they have ideas? Colleges?

Can you drive, Steve?

You sound like me. Independent. We have trouble because we are used to being so self-reliant that we don't know what to do when we NEED someone.

You will have to put your thinking cap on straight. You do need the medical attention very soon though.

Good luck with this, and let us know how it turns out.

Cindi o'h

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My city has a volunteer program called, Neighborhood Emergency Transportation Service (NETS) It is a free service for seniors and those with a medical condition who need rides and assistance to Dr. appoints. All they ask is that you give them 24 hour notice and that emergencies take precedence over general office visits.

Anyway, you should check with your city. Also, I know at times that the American Cancer Society and local area churches do this too.

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Sorry to hear your news :cry: . I do know, though, that our local ACS has a program called Road to Recovery. It provides rides to appointments and treatments. I know all about this because my husband was a volunteer driver for a while before he became MY volunteer. Check into it. The program works very well!

Kasey

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yes.... i had written down ACS and NETS and fergot what it was (duh)...

i have the best friends,family and co-workers in the world..they would do anything...but youre right cindy i am very independent and just couldnt ask anyone to do that... i prbly will have to be carried up the stairs.... i'm 6"4'/243lbs and getting "beeger" all the time (decadron)...

..i think i can still make it down the stairs and if my walker was there i could make it to the car and drive...no sense flippin' out just yet...i may not even have elms.....and who knows my onc might be able to give me something to get me abulatory again....

gonna give acs & nets a call...thanks everyone for the posts this has help SO much!!!!

gratzi....s

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duh...i'm such a goob! ..the "nets" was a local thing in texas... did do acs.... nothing jumped at me... i cant believe ins wont pay for it...gosh now's when i need it (oh well)...gonna have to "get busy" tomorrow.....

..it was so sad to read some of the stories on the forums there...breaks your heart....sure brings me back down to earth and helps me from feeling sorry for myself.....it can ALWAYS be a lot worse..... ....s

_________________

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well you old goob.. I think there are some lcsc members there in Nashville. Have to tried to give a shout to any of them?

Maybe post under General and see what happens.

If I lived close by I could give you a ride and to get you up the stairs might take a firecracker under yer butt, but somehow you would get up those stairs. Don't they have an elevator? Or handicap access, Steve?

I was thinking....suddenly not being able to walk sounds like an emergency to me... what does the ins. company think about that?

You hang in there. Sometimes ya gotta swallow the pride and ask. okay? They would probably be very happy to hoist you up!

Cindi

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...there was sdianneb cant get her to write anymore...hope she's ok....

..some of childhood buddys have caught wind of it and have a plan in motion..(they come in from all-over)...last time i ended up BALD!!!!...

the nurse said they might be able to send a PT to my crib and a girl to pull blood (that would be fantastic!!!!).

i dont think a firecracker'd do it unless perfectly placed....might come closer w/a bunch of rockets (and i mean a beeeeg bunch).....

i have to talk to 'em at bellsouth about the ins...my part of it has 1 girl you need to talk to...unless you get exactly the right person no tellin what will happen....

.....s

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My Mom experienced neuropathy(sp) after her chemo, but now she also has it from becoming diabetic. Her physical therapist who comes to her house has been trying a fairly new procedure on her. It is called Anodyne Therapy. It works, really well, but the only catch is it does not work forever, you must continue the treatments. So we would have to purchase the machine(after medicare and insurance its still about 500.00). If you google it there is some info on it, more than i can give anyway. I think moms initial treatment was 6 weeks and then they may have approved another 6 weeks, but no more now. It helped enough though that now that Mom is not having it done, she can really tell the difference and is considering buying one.

Good luck and hope you can find a solution soon

Kim

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You still have that crazy humor!! Love it

First-Call some of the clubs around you-Legion, Elks, Moose-they have med equip that you can borrow-usually just a deposit is required.

Second-there are home health agencies-not hospice-that you may be eligable for, usually ins pays for it. You could have a nurse come in to do blood draws, even a CNA to help with other things around the house you can not do.

Ask the Dr about the Home Health. I did that for a yr or 2 before I stated back in the ER.

Love Cindy

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Hey, Schmay,

you may have replaced my Dave as the holder of the crazy humor on the SCLC forum. now you gotta dress in drag, you know . . .

keep us posted. the chemo gave my mom (who just died of colon cancer) crazy neuropathy. never bothered Dave much, and he ended up with tumors COVERING his spine, but never kept him from walking with any neuropathy, the last week or so he was pretty much wheelchair bound from pain and weakness in his spine but not numbness.

Decadron will definitely do it to you, too - wreak havoc on your muscle tone and strength. it did my mom, very quickly.

Just hang in there, and listen, I know this sounds horrible, but if you beat the SCLC and achieve NED, it's WORTH IT. I'd do anything to have a permanently crippled Dave back.

Love your humor, don't lose it. ever.

God Bless,

Karen

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Hey Dave

The docs have finally agree that the Decadron has eaten the ball joints in both hips for me. I have had a shot in each hip to help me (another steriod) but come winter I will have both hips replaced. I have elected to wait since we are in the middle of horse show season now. I have to climb on a big bucket to get on the horse and I take vicodin to help with the pain. Not the smartest thing to do but I love riding my cutting horses. Your problem sounds somewhat like mine based on how you have a hard time walking like me. Reminds me of the movie Men In Black and me being the bug walking in the Edgar suit.

Don

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don....how cute....

i wont shoot or eat anymore of 'em.... (just kidding)......unless i run outta insurance...

.... karen yes i know..i would read what all was going on w/dave and would say "i'm glad i dont have that" (and i'm sorry he did)...but he answered and input (just about everytime i posted) and tried to help... i liked him.....

....s

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