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Halfway Through

Iluvlucy
Posts: 26
Joined: Feb 2019

This last week I had my 3rd R-CHOP cycle and am officially halfway through.   Seem to be tolerating it fairly well.  Vincristine is my nemesis causing issues with numbness in my fingertips and causing significant constipation.   Having mid treatment scans which my onc believes will show NED.  I will be having a discussion about the rationale of doubling my toxicities if there is NED.  I understand the rogue cell thought but I truly believe that I had significant disease relief after cycle #1.  So, anyway, Im feeling pretty good, am able to work most days and am anticipating an interesting discussion with my onc right before my next planned cycle.   

Paula 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3313
Joined: May 2012

Paula,

Congrats on the halfway point.

I was scheduled for 12 infusions of R-ABVD.  After 3 infusons (1.5 cycles), I had my first effectiveness CT.  The doctor showed me that it had made a comprehensive 50% to 60% reduction in node size. Extrapolating mathematically, this would intuitively suggest that 6 infusions would clear the nodes.   Asked about shortening treatment, he said it would be a profound mistake.  I did all 12.  In fact, I developed severe lung toxicity, and he would not reduce the dosing of any of the drugs.  Similiarly, weight loss of 10% suggests with most cancers dosing reductions, and after losing 15% of body weight, he still refused any dose reduction.

The number of scheduled infusions and cycles is derived from massive statistical analysis compiled over decades concerning what achieves long-term survival best.  Some people achieve lifelong remission with less, but their stories are ancedotal.

Cure during first-line treatment is way easier, and much less toxic and expensive, than relapsing later and requiring salvage therapy, with or without SCT.

Iluvlucy
Posts: 26
Joined: Feb 2019

Is now the latest theory on nlphl.  One NCI lymphoma specialist recommnded 4 wkly infusions of Rituxan only and to do active surveillance and repeat Rituxan as needed until nodes get larger than 5cm, then R-CHOP would be employed.  My third opinion said active surveillance only as I had such low volume disease.  She also said that at times the NLPHL resolves on its own and to do R-CHOP would be too toxic unless the nodes were larger than 5cm.  The only thing that tipped the scales was that a second pathologist found early transformed DLBCL cells in less than 1% of the cells in the excised node.  Then they recommended 3-6 cycles of R-CHOP.  So, there is no concensus in my treatment plan, hence my hesitancy to jump in head first without some risk vs benefit conversation.  Im not keen on more toxins poured into me unless there is rather strong evidence supporting doubling my toxicity.  I may go back to the third opinion NCI for more info.  

Paula

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3313
Joined: May 2012

There is a wide range of responses to NLPHL, which goes back to our early discussion about the fact that since it is so uncommon, there really is no Best Practices consensus, just various doctors having a variety of educated guesses, such you have received.  Active Survellence is mentioned here occasionally regarding this strain, and my doctor told me that I had had it a long, long time, so it does move quite slowly.  My thinking was that the younger I was for curative treatment, the easier I would tolerate the toxicity, verses after I was older, and less hardy.   Rituxan-only is commonly successful toward palliative effect, but will never eradicate the disease (I have never heard of such).  My case was very different, with widespread, bulky disease everywhere, so there was really no option but to act decisively then.

You are researching admirably and will make the best, well-informed choice for yourself,

Iluvlucy
Posts: 26
Joined: Feb 2019

Midtreatment scans showed favorable response but still have residual disease in one axillary node, so no choice but to continue with the last 3 cycles.  So did have 4 of 6 chemo this week.   Made that decision easy, I guess, but disappointed nonetheless.  Still tolerating treatment very well.  

 

Paula

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3313
Joined: May 2012

It is wonderful that the disease is vanquished down to only one detectable node. I am delighted for you -- it means the disease is not refractory (NLPHL seldom is), and it is virtually certain that you will be cancer free soon.  But anyone can understand your disappointment.

max

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