ABVD didn't work

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  • Lixx
    Lixx Member Posts: 21
    edited December 2017 #22

    Unsure Also

    When I got my PETS back in 2009, the hematologist never mentioned FDG or SUV. But my progress in treatment was not problematic. All he ever referenced (to me) was node size.  A few people here in the last year have written about SUV, but I am not sure how much to make of it.

    What I find most negative in your report is that your doctor "wants you to see a Lymphoma specialist."  By all means !  Lymphoma is at its worst when first-line treatment stalls.  Things become infinitely more complex, fast.  If I couldn't do a consult witht he doctor recommended by your doctor, I would nonetheless see someone for a review.

    Progress is progress, and at least early in you have experienced across the board size reductions among the nodes.  Ordinarily NLPHL is easily put in to full remission with little resistance.  If it is being resistant (which is unclear at this point), it may be because other things are going on.  As I wrote to you when we first met, correct pathology/diagnosis is fundamental. 

    max

     

    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.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    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.

    Go

    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

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    Lixx said:

    Thanks Max. Yeah I know I'm

    Thanks Max. Yeah I know I'm no doctor, I just play one on TV lol. Kidding, I do have a scientific background though so I tend to get curious and use reasoning but yes pure speculation of maybes. Maybe it's just to early to tell (I'm speculating again).

    I keep referring to my doctor as an oncologist but he is in fact a hematologist. I guess I should have clarified that awhile back but as I'm always going to the oncology office at the hospital I just kept saying oncology.

    I did take the steps to call this other doctors office at Jefferson Hospital in Philadelphia- just awaiting a return call for an appointment. Even if it's out of network my dad told me yesterday he will cover it. My current doctor also told me if there are any problems getting an appointment just let him know. So I assume he and this other doctor are colleagues.

    I tend to go to worst case scenario in my head (and easy thing to do with cancer) so based on everything known about NLPHL and usual good response to this treatment and what appears not to be the case with me I'm very frightened.

    Very good

    Everything in your reply sounds like good moves to me.  It is good that your current doctor is a hematologist.

    Hematologists are of course usually medical oncologists also. Yours may or may not be. The titles are usually linked to Board Cetifications the doctor holds. My onc for instance is certified in medical oncology, hematology, internal medicine, and two other things....lots of tricks in his hat.

    A relaxed weekend to you,

    max

  • Lixx
    Lixx Member Posts: 21

    Go

    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

    Thanks Max. Yeah I know I'm

    Thanks Max. Yeah I know I'm no doctor, I just play one on TV lol. Kidding, I do have a scientific background though so I tend to get curious and use reasoning but yes pure speculation of maybes. Maybe it's just to early to tell (I'm speculating again).

    I keep referring to my doctor as an oncologist but he is in fact a hematologist. I guess I should have clarified that awhile back but as I'm always going to the oncology office at the hospital I just kept saying oncology.

    I did take the steps to call this other doctors office at Jefferson Hospital in Philadelphia- just awaiting a return call for an appointment. Even if it's out of network my dad told me yesterday he will cover it. My current doctor also told me if there are any problems getting an appointment just let him know. So I assume he and this other doctor are colleagues.

    I tend to go to worst case scenario in my head (and easy thing to do with cancer) so based on everything known about NLPHL and usual good response to this treatment and what appears not to be the case with me I'm very frightened.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    Progress is progress

    Thanks for the update, Lixx.

    I go to an annual follow-up clinic with my cancer center regarding my HL, something they have me doing for life.  The year I got diagnosed with prostate cancer, I told the N.P. that I had seen a surgeon and a radiation guy, but had not made a treatment choice yet.  I mentioned that I would be interested in my oncologist's opinion, since he is a medical oncologist, whereas the R.O. and urinary surgeon were not.

    To my significant surprise, my medical oncologist called me the next day out of the blue and said he heard I wanted to speak to him regarding how to proceed.  I found this very thoughtful.  Then, in two weeks, I got a bill for $150 for a consultation.

    I do not know what consults ordinarily cost.  I was an established, in-house patient with this guy. Going to an outsider would undoubtedly be more, but I would think that a doctor reviewing your file would be under $500.  I am interested what others have paid for second opinions.  If anyone can remember the cost, I hope you share it here,

    max

  • Evarista
    Evarista Member Posts: 332 Member
    Finding a specialist

    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.

  • Lixx
    Lixx Member Posts: 21
    edited December 2017 #28
    My doctors felt me up for a

    My doctors felt me up for a good 15 minutes (checking lymph node size) before getting one of my Grannix shots last week and are now saying they think there has been progress and we'll stay the course for now, no need for a lymphoma specialist unless the next Pet Scan shows no real progress. Now I'm due to complete cycle 3 of ABVD this Friday so I assume this next pet scan won't be until February, when I've done cycles 4 maybe end of February at the end of cycle 5?

    I'm a bit concerned because the progress didn't seem that much, but they liked my line of reasoning that I had infections and delayed my ABVD twice so I only had 4 chemos when I should of been past 5 at the time of my interim pet scan in early December. Not sure if that makes a difference. Things seem steady now with the Grannix shots.

    The specialist finally did call me back and scheduled an appointment but cancelled it two hours later because they didn't accept my insurance (where I'm being treated checked and said they did but I guess they were wrong).

    Anyhow two options regarding the specialist because I'm leaning towards getting a second opinion. One I can go along with the doctors treating me, stay the course (which I will do unless seen by a specialist and there is significant evidence my current treatment won't work) and if no progress is made by next pet scan they will find me a in-network lymphoma specialist.

    Option 2 (since my insurance site does not list doctors that specialized- only down to the oncologist level- and calling them is beyond a headache and they are so unhelpful) is I get a cash price for a visit to see this specialist and go.

    I'm kind of tired of this neck lymph node expanding and contracting 4-5 times a day and it has me worried treatment is not working. Doctors didn't believe me at first until they saw it when coming in for the shot one day. They don't seem concerned but I've never heard of a lymph node going this crazy. It blows up a little bigger than a golf ball then shrinks down over an over.

  • Lixx
    Lixx Member Posts: 21
    This has taken a turn for the worst!

    So now I'm really scared. I've been trying to tell my oncologist since mid-December that my lymph nodes are not shrinking at all. Yet they've carried on with ABVD chemo and I've gone through 4 cycles (8 chemos). I thought I was developing a pneumonia because I was getting fevers/chills, a persistant cough at night, and coughing up phlegm with blood in it. Chest x-ray proved negative but during the examination at the oncologist office one of my doctors said she could see the lymph nodes in my neck from across the room and she was going to recommend we stop ABVD chemo because clearly it's not working.

    Thank you! I've been saying this for 2 months. I always suspected I was misdiagnosed. ABVD chemo melts away NLPHL nodes, and they have not shrunk at all. So my oncologist officially stopped the ABVD chemo (I was 2/3's of the way done), wants to re-petscan to see where we are. I know thats not going to be good. They also want to remove another lymph node (this time from my neck area) and have the lab check for DLBCL, THRLBCL, etc. I'm meeting with the surgeon on 2/26 so I assume surgery won't be till early March. From there I need to make an appointment with a lymphoma specialist but I can't do that until I know when surgery is so I have the biopsy results to bring.

    I swear if I was misdiagnosed by pathology I'm considering suing. A) They put me through 8 chemos of hell for the wrong cancer. B) They've given whatever cancer I have a chance to become much worse thus shortening my odds of living. Obviously I want to get to the bottom of this first and get cured if possible but I'm really upset about this.

  • Evarista
    Evarista Member Posts: 332 Member
    Second opinion on pathology

    Sorry to hear that things are not going well for you, Lixx.  You CAN request that the original biopsy material be sent elsewhere for a second Pathology opinion.  If you request that the "blocks" be sent, the 2nd institution will cut slides, stain, view, etc.  You can also have the original slides sent for reading/evalutation. Maybe reach out to MD Anderson, Sloan-Kettering, or Fred Hutchinson to find out how to go about doing this.  Or maybe somebody here knows how.  I have no idea how insurance would handle this or if you need to pay out-of-pocket. Good luck to you.

  • twowheels
    twowheels Member Posts: 31 Member
    Empathy for your frustration.

    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
    po18guy Member Posts: 1,298 Member
    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.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    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.

    Actually

    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

  • po18guy
    po18guy Member Posts: 1,298 Member

    Actually

    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

    Weak in the areas of B-cell and Hodgkin's

    Still learning a lot in that regard. On another forum, I know of two mirror image cases in which both patients were misdiagnosed and treated for the wrong lymphoma. NLPHL was actually ALCL, and ALCL was actually NLPHL. The problem is that pathology and thus treatment was wrong. Even though partial responses were observed, toxicity was cumulative and the fight had to begin all over again. It's still doable, but much more difficult. 

    Time's a-wasting. Lixx, get on it!

  • Lixx
    Lixx Member Posts: 21
    Well right now I'm in a

    Well right now I'm in a holding pattern and there is nothing I can do. I'm approved for the pet scan and just waiting for scheduling to set up a date. I'm meeting with my surgeon on 2/26 and as soon as I have a biopsy surgery date I'm calling the lymphoma specialist to set up an appointment. Obviously I need all the results from these to bring to him so like I said there is nothing I can do until steps 1 and 2 are done.

    Believe me I harrass them often. I find it absolutely crazy that I had to present case studies to my oncology team. This is what I gave them:

    https://www.hindawi.com/journals/cripa/2014/956217/

    So he wants pathology to specifically check for that when analyzing my lymph node (taking that crazy one that expands and shrinks from my neck).

  • po18guy
    po18guy Member Posts: 1,298 Member
    What about the existing samples?

    It would seem that good practice would have impelled them to re-check your prior biopsy samples, thus saving the time and hassle of additional biopsies.

    The jaundiced-eye view is that their corporate lawyers put the kibosh on that They can always claim a trasnformation or a de novo cancer - much lower settlements in that case.

  • Rocquie
    Rocquie Member Posts: 859 Member
    Lixx

    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

     

  • po18guy
    po18guy Member Posts: 1,298 Member
    Rocquie said:

    Lixx

    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

     

    No kidding!

    At my second relapse, all nodes were too deep for biopsy, so we had to treat it according to how it (mis)behaved. Well, even then it did not follow the script. Finally, we stopped treatment and allowed it to progress to the point where a node was available. After much argumentation, the pathologist asked my hematologist if I had a cancer history. Ya' think??? OK they said, then it's a cancer after all! It is "consistent with a relapse of angioimmunoblastic T-Cell Lymphoma."

    Fine. Except that I had never been diagnosed with that sub-type. 'Splain that one to me, Lucy.

  • ShadyGuy
    ShadyGuy Member Posts: 783 Member
    Right 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.

  • ShadyGuy
    ShadyGuy Member Posts: 783 Member
    Pools

    today most imaging labs use “pools” of radiologists sometimes working remotely from PCs. This makes it nearly impossible, at least at the imaging facility I use, to get the same radiologist every time. Though its probably not the case, being a natural born skeptic, I imagine some young Dr. half my age working from his/her laptop at the local Starbucks while drinking a latte and playing video games between CT cds. . Probably doesn’t happen however .......