Lurking and Not Posting

azoyizes · 01-20-2011, 09:58 AM

Hello all of my MS friends. I've been hanging around the forums, but only posting on the new people introductions. I'm going to try to change that.

DH is still struggling with chemotherapy. He's on his third chemo drug, Nexavar. It's in pill form, and he'd been on it for a little over two months. The latest CT scan was two weeks ago, and it showed no changes in the lung nodules--which is good.

The Nexavar causes some pretty nasty side effects such as diarrhea, hair loss, hand and foot syndrome (his fingers, hands and heels developed calluses that were very painful), and itchy rashes. He's also had scarring develop underneath his left eyelid, which causes pain every time the eye moves.

After he had the CT scan, we then went to meet with his oncologist. We love this doctor and his nurse. They are good people. Dr. Thomas told Arnie that he wanted him to take a two-week break from the Nexavar. After the break (which will be Monday), he's to start back on the med but at a lower dose of two pills a day. Then, hopefully his side effects will be less severe and the drug will control the tumors.

He gets down sometimes, but mostly he's trying to push the cancer out of his mind and enjoy life.

I had a port put in in November. They were having a terrible time trying to start an IV for the Tysabri. I met with my neuro and told him that it was time for a port. A week later, one was in. What a relief! Now it's just a needle stick and I'm good to go.

It's good to be back, and I'll try my best to not be a lurker any longer. xxx

Blessings2You · 01-20-2011, 10:07 AM

It takes less energy to lurk, doesn't it? Thanks for the update; continuing to pray for you both.

Kitty · 01-20-2011, 10:44 AM

Good to have you back Maryann. I use the "thanks" button alot. Sometimes it just takes too much energy to think of and then type a response.

Thank goodness everyone here understands!

SallyC · 01-20-2011, 11:13 AM

Hi Maryann..

. It's great to hear from you. You and DH havn't stopped being in my daily prayers.

Kitty is right, if you want to let us know you are here and reading our posts and supporting us, but just to tired to post. hit that thank you button. I wear mine out..

Debbie D · 01-20-2011, 12:04 PM

Maryann...prayers for you and DH

kicker · 01-20-2011, 12:18 PM

Maryann
You and DH are in my thoughts.

Riverwild · 01-20-2011, 08:45 PM

It's good to hear from you Maryann!

I've missed your updates on the Tysabri thread and wondered how you both were doing.
I'm happy to hear that the port is making things easier for you.

You and Arnie are in my thoughts and prayers, with hopes that his treatment is both bearable and beneficial.

barb02 · 01-20-2011, 09:42 PM

Just wanted to say I am happy you dropped us a line. Adding my prayers for you and your DH.

hollym · 01-22-2011, 02:29 PM

Thanks for posting. I see you on FB a lot, but that is more lightweight stuff. I'm sorry your hubby is going through so much with the chemo. That takes a lot out of you to worry about him, I know. I think I am that "thanks" button queen these days, so I definitely get the lurking.

NurseNancy · 01-24-2011, 05:34 PM

hi maryann,

it was nice to hear from you and get your update.
don't feel bad for lurking, sometimes it's best to save your energy.

i hope arnie will feel better with the change in dosage.

your port should save you a lot of stress. my best to you both.

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