ABVD didn't work

Lixx said:

Thanks for your reply Max

I'm very distressed also that my oncologist wants me to see a specialist. I'm also wondering if the diagnosis is correct myself since NLPHL and DLBCL (Non Hodgkins) have so many similarities. I did ask my oncologist yesterday if it could have mutated into Diffuse Large B Cell and he said "Not during treatment!" but then again how is it that I received 4 chemos and 6 Rituxan and cancer activity has increased in some regions?

FDG is the acronym for the tracer dye they use. SUV is standardized uptake value- which I assume means just how active it is.

Yeah I'm pretty upset that people keep telling me (mostly the doctors at the hospital) that NLPHL is easily treatable when it doesn't seem to be going that way at all. While my hopeful theory is (because its now absent from my spleen and bones and there has been some reduction in the nodes) that perhaps my chemo has been too sporatic (twice I went three weeks without it) and maybe it enabled the cancer to regain a foothold, still it is NLPHL and should have responded better than this. Especially with the 6 rounds of rituxan.

I almost don't want to do chemo this Friday because what if this is not working? I called and left a voicemail with the specialist my doctor recommended and spoke to. His office requires the biopsy slides (of course) so hopefully the two doctors discussed it over the phone. I'll follow up by requesting them when I go in Friday anyhow. I'm terrified now thinking they'll see me and say I need some stem cell transplant etc.

Me, I would get the infusion Friday. To not do so puts you 'AMA,' or 'against medical advice.' It might have insurance repercussions (I am not certain).

Doctors do not move rapidly enough at times, so it would not surprise me if this Friday the two had not yet spoken.  I view your case as atypical, but not horrible.  Give it some patience.  And you and I are not doctors, and cannot believe that your disease has morphed into something else on a suspicion.  That is not medicine.  Over my five or so yearrs here, I would say about 20 NLPHL patients have written to this Board. Most went straight into C.R.  A few had severe trials and required long hospitalizations, but got through. And 2 or 3 have reported grave situations that seemed to not be working.  But most of those discovered that they in fact had other diseases.  It is just what I have read here....

As I suggested yesterday, it is possible that the drugs WILL work. Rituxan by itself is (to my knowledge) never curative of advanced Stage IV NLPHL, so do not read too much into having had numerous Rituxan infusions.  Rituxan for what you (or I) have/had is supplemental and assists the combination, but cannot work by itself.  Rituxan for years was not used for any forms of HL at all -- it began exclusively as a weapon agains NHL, and Rituxan WILL defeat some indolent NHLs (like Follicular), but this has never been the case with NLPHL.   So lack of radical node reduction thus far is not highly surprising.  Advanced NLPHL always requires heavy ABVD, CHOP, or similiar combinations (Stanford V, or others).

Your REASONING is sound and matches what is known, but it is also highly SPECULATIVE thus far. You are throwing out ideas that are POSSIBLE, but which have little or no evidence to base them upon.  And a little frantic, understandable also.

The most useful thing you can do at this point is getting another oncologist to do a formal review of your diagnosis and treatment plan. The oncologist ideally will be Board Certified in hematology also. All Lymphomas are blood cancers after all. My hematologist began  his greeting to me and my wife by oversimplifying a little ansd saying that "Lymphoma is essentially leukemia, in that both are WBC cancers, but Lymphoma has taken up residence in the lymphatic system, instead of the bone marrow and bloodstream."   

Getting reviewed by a better doctor is what will most help at this point in my layman's opinion,

max

One way to look for a specialist in your area (if you have the time & energy) is to look at who is doing studies at www.clinicaltrials.gov  Focus your key words and use the "locations" feature to narrow down the options.  You would need to call each office to see if they are in-network for you.  The other possibility, beyond what you've listed is to see if there is any kind of out-of-network option that you can make use of.  Splitting the cost with your insurance provider somehow.  Good luck with it.

Empathy for your frustration. My initial trtmnt was delayed a month due to ins approvals for a PET (even after positive biopsy/pathology). I would have accepted a dire fate/prognosis, but more difficult to absorb would have been hearing "if we had only caught this sooner, you would not require a laryngectomy".
[My concern was not the multiple nodes that I could FEEL enlarging but one particular node behind my larynx/trachea that began to affect my speech] I later read (don't quote me) that lymphoma does not metastisize.

re: PET. After confirming with your current Onc/hematologist that there is no medical reason for a delay (infection affecting imaging quality), I would actively attempt to arrange for PET asap. I would also follow every protocol to get the most accurate image possible. (EG: fast, limited physical activity, lots of fluids).

As for me (NSHL), the axilla nodes (where I first noticed a lump), did not reduce in size and they also went from pliable to stone-like by the time I began ABVD. Other nodes quickly melted away (as you mention) but my axilla nodes remained the same size (large chickpeas) and stone-like for 5 cycles before reducing to their current pea-size.
My Oncol was more concerned about SUV activity on my interim PET than size.

Oh, I had enlarged nodes most everywhere: axilla, clavicle, abdomen, groin, even one on my left foot (just left of cuneiform bone). I also required a separate excisional node removal on my shoulder blade but the ones that seemed to change size the most - swell, then reduce and enlarge again, were my neck and occipital nodes.

po18guy said:

William of Ockham's razor

If it is not behaving or responding as NLPHL is expected to, then it may very well not be NLPHL. Recent discoveries have shown that some Hodgkin's is of T-cell origin rather than the normal B-cell. This makes a huge difference. Some Hodgkin's cases have been mistaken for Anaplastic Large Cell Lymphoma - and vice versa. There is some thought given to re-classifying NLPHL as a non-Hodgkin's, since it shares little with some established types of Hodgkin's. Thus, ABVD would go away and R-CHOP, R-CHOEP or Bendamustine-Rituxan would step in.

For the sake of your life, I would consult ASAP with a major NCI desginated comprenhensive cancer center. It is insanity to continue a treatment which is not illing the cancer.

Po,

You might know that at times NLPHL has been classified as an atypical NHL.  I believe that in a few European countries it is still considered an NHL today.  But internationally abvd remains the traditional first-line approach.  Stanford and a few major cancer centers (unless this has changed) traditionally treat it first with r-chop however.

Lixx, it appears pretty clear to me that your disease is NOT conventional NLPHL.  Every case of NLPHL that did not readily respond to abvd here that I can recall was later discovered to in fact be something else, usually T-cell.

It seems like we have been discussing correct diagnosis in your case since Day 1.  Good luck getting this sorted out, and sooner will be better than later.  I know that you are doing what you can.

max

From what I understand, pathology is subjective.

I was originally diagnosed with marginal zone lymphoma. When I went for a consultaion with Duke University, they re-read my pathology slides. They diagnosed the lymphoma as follicular rather than marginal zone (closely similar). Duke did further studies (FISH) and confirmed follicular lymphoma. My doctor went back to the original pathologist, who re-checked the slides and agreed it was follicular. 

I urge you to have your original pathology slides sent for another study/opinion. The excellent website lymphomation recommends a second pathology opinion in every case. 

Best,

Rocquie

pathology based on looking at slides (very similar to reading CT scans) is very subjective. My Doc compared it to seeing patterns in the clouds. Some see dogs while others looking at the same thing see a whale and a third might see an eagle. You want a radiologist who sees clouds. Its best to rely on chemistry to verify results of a biopsy where possible. Some conditions are very obvious on a slide or CT while others are not. This very aspect is why its best to consistently use the same labs and radiologists for initial diagnosis and follow on and have all results double or even triple checked. My next scan is Wednesday morning. As per always I will pick up the cd on Thursday. I will read the initial radiologists report and then send the cd, without comment, on to an independent radiologist at my expense ($500). “Trust but verify”. We all make mistakes and in my cancer journey I have caught several potentially very serious errors. Some docs are miffed by knowledgeable and articulate patients. If you encounter that explore using other physicians. After all its your life. A key cause of issues in my case was that my lymphoma was both nodal and extra-nodal. Doctors are trained to look for horses not zebras. I had horses AND zebras. Best of luck Lixx. I so wish I could help you.