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Good scan report

Machir
Posts: 32
Joined: Mar 2013
 

My scan came back positive and the doc says I'm back in remission. For anyone reading this who didn't see my earlier post I was diagnosed with Stage 3 Follicular NHL back in 2004, did eight rounds of CHOP-R and was in remission for seven years. Found out the FNHL was back last October and did a different treatment using Zevalin.

 

On the chance it might help someone reading this here's what I know about Zevalin. It can only be used when there is no, or very little, cancer in the bone marrow. It's easy (well easy compared to 22 weeks of CHOP). It starts with a dose of Rituxen followed eight days later by another dose of Rituxen and an injection containing the radio isotope Zevalin. A couple weeks of not feeling quite right (admittedly may have been psychosomatic) and that is it. The Radiologist I had says it's not as commonly used in the US but is widely used in Europe. The one down side is the drug itself is expensive at around $50k and I was told a lot of insurance companies say no the first request but most will approve it if it's resubmitted. This part seems like a non-issue to me. $50k might be a lot of money but the cost of putting in and taking out a port plus the eight rounds of CHOP with four or five Nulasta shots at $4k each (that is what they cost in 2004 --- they are probably less now) came to more than $50k. The only down side to this treatment is you don't get to take that miracle drug Prednisone (sorry - couldn't resist the joke). I've been told there is a chance it may at some time become the first line treatment for newly diagnosed FNHL patients. I'm not the one smart enough to know if that is the right thing or not but thought I'd explain it so anyone facing CHOP could at least ask about it as a possible alternative.

 

So as of right now I'm officially in remission round two. When I was first diagnosed and they told us about the 'treatable but incurable' side to most FNHL I told my wife I'd have to go through three rounds treatment. The first two to get into remission and the third one to get cured using some new drug invented in the future. I've now got the first two stages of that done getting into remission twice.  Now some scientist needs to get that cure figured out in the next seven years so I can get cured when I relapse the next time. :)

allmost60's picture
allmost60
Posts: 3154
Joined: Jul 2010

Hi Mac,

  So happy to hear you are in remission again! Your story and cancer journey fills me with great hope for myself and others with the same cancer as you. Hope you will stick around and share your success, as it is so encouraging for those of us that have not been deemed NED yet, or in remission. Thank you for sharing! Now....celebrate your wonderful news and enjoy each and every day to the fullest. Best wishes...Sue  (FNHL-2-3a-6/10)-age 62)

illead's picture
illead
Posts: 485
Joined: Aug 2012

Well, this is turning out to be a pretty good day, Celeste is hopefully done with her procedure, our anniversary, Emily posted, and now your good news.  That is just wonderful Mac and like Sue says, it gives us all hope.  For most of us, we or our loved ones are facing a relapse, but like you say, the longer it takes the more chance for more study and devepments.  It is what we hang on to.  You must be a happy man, again.....wonderful, wonderful news.  A 2nd round of margaritas for all !!!!!

Bill and Becky

jimwins's picture
jimwins
Posts: 1983
Joined: Aug 2011

WooHoo!  That is great news, Mac. I hope you don't experience "round 3" and that gifted scientist comes up with a cure soon.  

Wonderful news!

Hugs - Jim

lianadw's picture
lianadw
Posts: 72
Joined: Jan 2013

Hi Mac,

I'm so happy for you!! Celebrate and have a margarita for me. Thank you for sharing so much of your experience and knowledge with others. It's really helpful.

Warmly,

Liana

Machir
Posts: 32
Joined: Mar 2013

Sue, Bill and Becky, Jim, Liana thank you for the post. If my experience can give you some hope at least there is some benefit from this. There are plenty of reasons to hope. It's a crazy thing. Your world goes upside down. You try and be positive but have moments where you imagine the worst. The rest of the world keeps on moving through their lives and....and I'm back to 'It's a crazy thing'. One thing I feel a times from all of this is lonely. You have all helped with that. If I can help you in any way let me know. I'll be doing serious praying for all of you.  You have all helped a lot of people with your kindness....wtg on that.  I hope the karma of the world returns that to you in positive outcomes.  All best my fellow survivors.  Hang in there.  Mac 

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