Helen's Blog....

I sit at my computer today and think of my disease.  I have Hodgkins lymphoma and think of all the things I have been told: 

‘I have the good disease;  I have the cancer that if you are going to get cancer you are lucky; it is curable.’

But as I sit here today I ask the question why does ‘it’, the Hodgkin’s, still return?

I have been very fortunate with the care I have received, and I truly believe that I've had the best care and continue to be appreciative of my team around me... but still the question is forefront in my mind..... why does the Hodgkin's return??

When I was diagnosed in April 2006 I was told of the high success rate for stage 2A Nodular Sclorosing type lymphoma.  I was given the traditional ABVD chemo, radiation and I was in complete remission. 

I responded well to treatment, both chemo and radiation and the team of doctors felt the same, as I did. 

But, it returned and we moved to a stem cell treatment. 

Now I realized that it was a 50% success rate but again, did well with treatment, and additional radiation!  My big fat Greek determination fought the cancer!

Again, doctors were pleased and optimistic with the way I responded to treatment, but, alas, the darn thing returned in Jan 2009.

I had more radiation and 2 clinical trials.  The Trials were not very successful, but now I have started with weekly vinblastine, a palliative care chemo.  Fingers crossed hoping the b-symptoms improve and the side effects are to a minimum. 

But I think of the people whom I have met that have similar stories like myself.

There are 5 of us, we all have or had Hodgkins and 1 has passed on where they had refractory, 2 (me included) have had to continue treatment of reoccurrence/refractory, and 1 had a reoccurrence after 4 years post stem cell 4of the 5 have all had stem cells transplants and 1 is in remission for 3 years~ yeaaaaaaa~ yippee~ woooohoooo!!!!   

My question is: in my circle, why are so many of us having this reoccurrence and why? 

If we have the ‘good cancer’, then why are 3/5 of these people in my circle (including me) had it return?

1/5 passed away.  What is happening that is making this return? 

As my oncologist said, ‘there is nothing I did or didn’t do that caused this.’

I believe that! Is there research happening that can help reoccurring or refractory patients? I know I have been on two clinical trials.  It is just strange that in my small circle the numbers are like this. 

And I've met all these people during different times of my journey.  We did not all meet because of the returning Hodgkins. 

So I conclude with this thought: if this happening in my small circle, then are the numbers changing for cure rates with Hodgkins?  Is there more research happening for refractory/ reoccurring patients?

If not, why not??