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so here's where my mind is at..

cgil13
Posts: 2
Joined: Apr 2011

Hello everyone.
I'm brand new to this site. I've had Hodgkins since 2000 and have been through every type of therapy, for the most part successfully. I've handled it all fairly well, physically anyway. But right now I'm kind of stuck in no-man's land. I had a chunk of my left lung removed, which was hodgkins, and according to the pet scan, I have a couple spots that are most likely hodgkins as well, but are premature and aren't technically cancer. There is also a new drug getting FDA approval later this fall that has had good success in fighting hodgkins. My deal is I'm good at fighting, but not so good at waiting around. Waiting for my cancer to age enough to have insurance be ok with it and also wait for the drug to actually come onto the market. So I have to stay on disability to keep the insurance, not work, and sit around and stew mentally. Anyway, thats where my heads at, thanks for letting me vent. Chris

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Chris,
It's a shame the hoops people are forced to jump through and I'm sorry you are experiencing these problems. It's hard enough just dealing with the disease. You can come here and vent anytime you need to. Someone is usually checking in and will respond back. Do you remember the name of the new drug coming out in the fall? Let us know how things go with you, and welcome to the group. Best wishes...Sue (FNHL-2-3A-6/10)
Follicular Non-Hodgkins Lymphoma-grade2-stage3-typeA-diagnosed June 2010...age 60.

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Cgil 13
I can imagine how you feel at this point and all I can really say is I agree with what Sue has said. Welcome to the site and someone will be here to help you when you need it. If you need to vent then you are in the right place. John

onlytoday's picture
onlytoday
Posts: 610
Joined: Jun 2010

Hi,
Welcome to the sight. You will find a lot of great information here as well as support! You've come to the right place.

Reading your history makes me think what a warrior you are! Right now this is getting to you, very understandably. When you look at where you've been and what you've done it's amazing and you are so strong!

Write anytime. We are here for you!

Donna

NMZ NHL 05/10 with Malt NHL 04/11

Michele23
Posts: 168
Joined: Mar 2011

Hi, Welcome Have you exhausted all other drugs that you want this new drug coming out?Not trying to burst your bubble but never set yourself up.Good to keep the faith and believe but not every drug works for every person.Side effects and so on vary from person to person.Does your onc feel this may be the ticket?Wishing you well and sending good thoughts,Michele Dx95FNHL3

bluerose's picture
bluerose
Posts: 1112
Joined: Jul 2009

It's true, the waiting part of the cancer journey is horribly difficult for many of us. I had non hodgkins lymphoma and although my initial diagnosis and subsequent treatment was fast, that was 20 plus years ago, along the way there has been and continues to be a ton of waiting for this test or that test to watch this symptom or that symptom or to handle new specialists and the waiting lists most of them have too. It's no fun.

I think the best advice I can share with you is that you have to have a goal as to why you are doing it all - for someone or to reach some other goal and even if you are on hold for a bit for whatever the reason is perhaps you can find something smaller to work on towards that goal to keep you busy. Planning things you will do when you able to go back to work or even getting started on some project will help the time pass. If you are feeling very down perhaps have a chat with your family doctor and make sure you aren't going into a depression and if you are there are counsellors who can work with you to help you through the process. Depression is something that can be cured or managed so if you feel that's the way you are headed don't let it get worse. I check in with a psychologist now and again to make sure I am still on the right track.

Waiting and more waiting is part of this process so don't feel alone, we have all been there sooner or later. Just knowing you are validated and not alone often helps just in knowing those things.

All the best.

Bluerose

miss maggie
Posts: 929
Joined: Mar 2010

Dear Chris,

So sorry you have to join us on this site. We are hear for you always.

My question, the operation on your left lung caused by Hodgkins, and the spots, possible
Hodgkins, is this something new, or from your original DX in the year 2000. What were your
symtems??

You say "all your prior therapy was somewhat successful" Hopefully you will remember this,
and always stay positive.

Yes, yes, most times I am also good at fighting, but the waiting game is too much to bear.

All my postive thoughts to you. Love Maggie

DX Sept 2009 Small bowel perforated - Biopsy showed NHL caused perforation. Sub type
Extranodal marginal zone b cell NHL = possible remission Jan 2011.

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