Deb.. Deb.. paging Deb.. I have to hope that since we havent heard anything from you as of late that you are sitting pool side in your bikini living the life??

Hope all is well
xo

 

Love you Deb! Hope all is well with you!

 

Deb! I too hope all is well with you. I know that its a tough time and it might not be so easy for you to post with everything else that you've got going on, but I want you to know that you are still in my thoughts and prayers.

 

Hey everyone.......thank you so much! I'm sorry I haven't updated you sooner, I was hoping to have a scan under my belt so I could give a more definitive update.

I am up to treatment #3. As always the trip into the city was harrowing (actually this last time, it was the ride back!), but a small price to pay if this works!

So far it seems to be holding this at bay with only minor side effects. I really have to watch that fatigue thing. I feel good and then I try to do things like I used to and forget that my body isn't quite ready for it. I was away for three days with the guys racing at NJMSP last week (no I didn't drive). First time since this all started that I really got out and enjoyed myself for more than a day. Five ride alongs with the best group of guys ever! Then I had to run back and forth to Jersey to drop my son to my mom so she could take him back to Florida for a few weeks.

I developed some minor itching this week on my arms, which I found out could be another side effect called the SGN Itch so I've been taking benedryl for that.

I have my scan coming up this Wednesday and am hoping and praying for some good news! Regardless, the doctor wants me to stay on this treatment until at least the fall hoping that the FDA will approve the drug for mainstream use. If that happens I can go on and off of it as often as I need to. Right now, if I go off the drug and the lymphoma comes back (which I'm confident it will) I may not have access to the trial again.

Aside from that I've gained a whopping 8 pounds and am now up to 130lbs......since I'm having trouble buttoning my pants, my fat *** has to start doing some serious sit ups

You guys are so great to keep checking in on me (Kim, I wish I was lounging poolside in my bikini living the life, lol......but in a way, I guess I am because I'm able to get up and do a lot of things that that I couldn't do a year ago......like LIVE)

So much love and hugs to all of you!! I'll let you know how the scan goes!

 

 

I heard about your ride alongs at NJMP and that you had a big grin the whole time
I miss HPDEs but the little guy has priory now.
Keep up the good work and having an *** now is a good thing

 

Praying for great results

 

Best wishes

 

I got my mojo workin'............

 

i justed joined the corvette forum and saw your thread i wish you well and i hope the new treatment will work well my brother has been diagnosed with NK (natural killer) t cell lymphoma recently it is in his throat near his voice box it is inoperable
he has had the methotrexate already along with another agent at the same time he is going through radiation now

we are already thinking about clinical trials and were thinking about sloan kettering although it is a far drive from pittsburgh pa
my brother has a rare lymphoma like yours-only a few people have been diagnosed in the US with his type of lymphoma it is predominantly found in the orient and south america so it has been difficult for them to treat

my thought and prayers go out to you i wish you well and i really learned alot from your thread on here i would definitely like to see how your trials turn out hopefully for the best kevin

 

Well, first off.........welcome to the forum. I hate that this was one of the first threads you were drawn to, but I thank you for the good wishes and if just ONE thing that I've posted here helps your brother in any way, then its all worth it!! I try to post up my experiences along with as much clinical information as I can.....not that I expect everyone to understand all the jibberish all the time, but it gives me an outlet, it reminds me how many people truly care and how much support I have and if I'm lucky, on a rare occasion, someone like you will read this and know that if you or someone you know is going through anything similar.....you're not alone. If more people like us with these rare types of cancers collect in one place, it will force the hands of doctors and hospitals, like Sloan, to do more research and try new things and realize that these rare types of cancers are more deadly than most due to them being "pushed aside" for lack of subjects or misdiagnosis.

My thoughts and prayers go out to your brother and your family - I sent you a PM. Please feel free to stop back in this thread and let me and the rest of us know how your brother is doing - there are a few of us going through this right now and this thread has turned into a little bit of a support group so to speak.

You guys are not alone

 

Hey, you. Yeah you.

Punk!

C'mere!

 

Good to see you posting Deb!

 

Here I am thank you! I need lots of those all the time, the more the better!!

Hey John! Yeah I poke my nose in here from time to time and into the bar thread........but sometimes it gets scary in there and its also kinda cool sitting back and knowing its not me for a change

I'm doing alright! A few obstacles as always, but in general, I feel pretty good about everything - I have my guardian angel looking out for me all the time

We should do lunch or coffee one day - I have two corvettes in my possession for at least the next week that I need a reason to drive!

 

When do we get the results from Wednesday's scans Deb? If you're looking for a target for a Corvette ride a half dozen Corvettes are doing the Monday/Tuesday HPDE @ Pocono as guests of the Delaware Valley Miata Club's annual event, and I'm sure you could at least get into the garage area to hang out.

 

A 130 lb., gad ( ya thats an old word , Google it ) you must be as big as a HOUSE This is great news Deb , keep us posted and as always ,your in our prayers
Love Ya!
Bob & Marie

 

my brother has been getting radiation and unbelievably the cancer in his throat is almost gone but there is damage there that will be there for good due to the cancer
the bad news is that the cancer is in his lymphnodes so he will have to have chemotherapy again in about a week or so after the radiation is done
he is talking and swallowing much better and hasnt had the night sweats etc overall feels alot better
so at least it seems we are moving in the right direction so far
i hope you have some good news soon!

 

Your attitude through this whole thing has been amazing, but I'm glad to hear that you sound even more positive about it.
Guardian Angels are great! We all need them from time to time.
Yes we should!

 

Got the results back from that scan - it looked worlds better than the last but still showed some light activity in the lymph nodes in the groin area, but nothing that would alarm them so that was good news!

As of this past Monday 132lbs, lol. Maybe not as big as a house, but it sucks having 10 pairs of pants that refuse to button

I've been following your posts also - you and Marie are always in my thoughts and I'm really sending out some positive energy for Marie! Big hugs to you both!!

This is good news!!! You have to take the small victories, sometimes its all you get. So glad to hear he is back on a positive road! Just make sure he's careful with the chemo and germs! 9 times out of 10, getting a secondary infection due to a compromised immune system is what causes things to go downhill fast. Good thoughts and prayers for your brother and your family

Thanks John!! Attitude? YES!! Good? Well that depends who you ask

I seem to be needing that Guardian Angel more on a full time basis but thankfully I have one that is strong!


I went for treatment #5 this past Monday - as long as I'm on some form of chemo, it seems to keep it in check. The doctor is thinking that the trial drug (SGN-35) will be approved for mainstream use by the end of this month so he's scheduled me for one more treatment. As long as its approved by the FDA, after the next treatment he is going to take me off of it to see what happens......this is the nail biting part......

If it comes right back again as it did the first time, then I'll be able to go back on the SGN-35 and if its out of the clinical phase, we can then "tailor" it more to my specific needs........maybe every other month as opposed to the every three weeks that I get it now.

But overall, aside from fatigue a few days after treatment and some minor tingling in my feet, I feel pretty good!!!

Thank you all so very much!

 

Deb, happy that you got good news