The Leukemia & Lymphoma Society Community: Message List - Got room for another newbie?

Re: Got room for another newbie?

communityreply@lls.org — Thu, 04 Apr 2013 20:43:01 GMT

Fran, mcee, Jim, Holy cow it's been tooooo long and wonderful to see your smiling avatars on the site. I think I've been away for a year. I thought I'd drop by today to see what's up.

Jim, I am sorry to see that you have had to continue treatments. Good luck with your treatments. I'm sending good thoughts and prayers your way!

I am happy to report that I just finished the last maintenance infusion of Rituxan last week. It's back to "watch and wait", but no more barcalounger time for me (at least for a while.

Re: Got room for another newbie?

communityreply@lls.org — Wed, 13 Mar 2013 02:16:48 GMT

Jim....so much good is said about benda and rituxan, so the GGA 101 has to be the frosting on the cake as it were.

I'm so happy you are getting through it, nausea is not fun, but well, one does warrior on.

Keep smiling, this time the infestation will become history!

mcee

Re: Got room for another newbie?

communityreply@lls.org — Tue, 12 Mar 2013 23:32:07 GMT

Just let us know when in town, to answer your question, the PET scan showed it in chest, inguinal area. Bone marrow biopsy also showed the presence of the disease, biopsy confirmed.

I know I will do fine, as I have said before anything added to my life is just icing on the cake.

Life is good, I have a wonderful family and extended family, I am also blessed with great friends (including all of you) , and I have people praying and sending me positive thoughts through out the world. Never thought so many people were interested in me...... I am deeply moved.

I know I am rambling on, but honestly life can't be better.

Jim

Re: Got room for another newbie?

communityreply@lls.org — Tue, 12 Mar 2013 23:22:19 GMT

Hi Jim, Sorry about the 5 weeks of h_ll, glad the outcome was positive but you are such a positive guy I'm not surprised. lol

I have heard of the nausea associated with benda. Hope this go round keeps you in remission longer, dare I say FOREVER.

What part of your body did this reappear?

We have some old Navy friends who left Houston to live in Galveston about 10 yrs ago. Oddly enough it was after their 21 yr old son died from DLBC that they packed up and left. He was treated at MDA and his dad works for MDA to this day. Not sure what he does at the hospital but it has to do with keeping some equipment in radiology working. I could be wrong about that. If we head that way I will give you a heads up. Honestly I don't travel well lately so not sure when that might be.

Take care and get well.

Fran

Re: Got room for another newbie?

communityreply@lls.org — Tue, 12 Mar 2013 22:35:52 GMT

Hi Fran:

Just came through 5 weeks of living h_ll and stress beyond belief (actually not really related to NHL), but the out come very positive and life is back on track.

As you can see I am still around, about to start round three of Bendamustine and GA101 this coming Monday march 18. each treatment is a two day event. first day i get GA101 followed by Bendamustine, next morning I return for another infusion of Benda. I rest for two weeks and come back for blood work, rest another two weeks and the cycle starts again. mind you the first round of treatments was almost weekly.

So far with the exception of growing whiskers and a tail, I am doing good except for the nausea. This time sound the nausea is a bit more intense but manageable.

As this is an experimental protocol, there is still more to learn, but it is anticipated that this treatment might be what is used in the near future.

So far all blood work is OK. With next treatment I will be half way towards hopefully a longer lasting remission, but mind you I will be on GA101 maintenance for the next 2.5 years.

Thank you for the well wishes, BTW if you ever make it down to Houston let me know.

Cheers

Jim

Re: Got room for another newbie?

communityreply@lls.org — Tue, 12 Mar 2013 21:16:44 GMT

So Jim, what treatment did you end up getting? How is it going? What part of your body did it rear it's ugly head? I keep you in my prayers and know you are smiling your way through this stinker again. Update?

Fran

Re: Got room for another newbie?

communityreply@lls.org — Sun, 03 Feb 2013 19:18:38 GMT

I am sorry I didn't get back here for so long. Somehow I stopped receiving emails that let me know someone responded.

Jim dang here you go again. Even though I know this thing (nhl) is the comeback kid but I always hope it won't for anyone. I will be watching to see what they put you through on this new journey. Is the family dealing with it as good as you are? I sure will be praying for you. That humor always lifts me so I know it will those around you.

The thyroid thing is still under investigation. It turns out it isn't on my thyroid but under it in my throat. So off to the ENT on Valentine's Day, what a treat!!!

Barb and mcee it was great to see you guys around again. Jane wrote me an email too and she is moving along.

Everyone please stay as healthy as possible and lets keep in touch.

Take care.

Re: Got room for another newbie?

kreble.sadie@gmail.com — Sun, 06 Jan 2013 01:13:42 GMT

Jim, saddened with your news, but encouraged because you have been such an ace cheerleader for us all, full of optimism, humor and wisdom, all of which will be great warriors in the coming weeks.

Sending the best of the best of wishes that this too shall pass.....quickly!!!

Prayers of health to you always.

Kgirl

Re: Got room for another newbie?

kreble.sadie@gmail.com — Sun, 06 Jan 2013 01:05:24 GMT

Hi Franny....again been away for awhile but I always touch base to cheer on our troop(s). I hope your heart issues have resolved and this thyroid situation a wee bump. I changed computers awhile back and my new email address is kreble.sadie@gmail.com. Haven't seen any updates, maybe that's why. My heart and thoughts are with one and all that have to deal with this dang stuff. Still doing great, 4 years next month and hoping no more shoes land on my head.

Re: Got room for another newbie?

communityreply@lls.org — Fri, 04 Jan 2013 05:43:39 GMT

Jim...first let me wish you a happy and good new year, full of healing.

What a crummy thing this disease is. It.is.just.wrong.

But, rejoice in your strength and rejoice in knowing you are in great hands there. One of the most innovative cancer teams on the planet!

God will be with you through this latest test, and healing will wing it's way, from Him to you!

Keep us posted as you can.

You are in our prayers, know this.

mcee