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Treatment for NLPHL in abdomen only

2

Comments

  • Bill_NC
    Bill_NC Member Posts: 133
    Zentao said:

    Hi Bill,

    Hi Bill,

    NLPHL relapser speaking here. Had my first bout in the year 2002 - and now gone through my second bout (diagnosed early 2018). Have done now 4 rounds of R-CHOP and have been told I am in complete remission (2 more rounds to go). 

    Happy to answer any specific questions you might have. In my case many of my 2nd round nodes (had 5) were in a similar location to yours. For the actual diagnosis, we tried 2 Core Needle Biopsies but these proved inconclusive (I knew going this was a possibility in particular if dealing with NLPHL). Ended up having a laparoscopy.

    Not sure what kind of chemo regimen you've had in the past - but R-CHOP has proven to be manageable/tolerable to me, although of course it's not a walk in the park. All in all, the biggest side effect has been fatigue. 

    I've opened up a separate thread as well, you'll find a bit more of information on my case there.

    Thanks Zentao

    you had no relapse for 15 years what your first treatment was ?  mine was ABVD alone. I checked under your name and did not see any blog. not sure where to go to read the blogs. 

  • Bill_NC
    Bill_NC Member Posts: 133

    Fifteen Percenter.....

    Hey Bill.

    I'm very disappointed to hear of your apparant relapse, something that occurs among around 15% of all NLPHL patients.  I have my own annual oncology check this week. I'm in a lifetime followship program run by my cancer center.  I had a CBC a few months ago after an ER visit due to extreme blood pressure, and it was all normal, but I have been having extreme itching for a few months now also, so checking is well advised.  I have not had any other symptoms.

    I have read some articles this year about new drugs used against relapsed NLPHL, some of which show substantial promise. I will look for those.  You must have a biopsy, since NLPHL often (not usually, but often) does not return as NLPHL, but rather as different strains, often Large-B NHLs.  To treat properly, exactly what the node is must be established.  But an irony of this is that Large-B is easier to permanently eradicate than indolent HL anyway.

    Radiation therapy (RT) as a treatment is highly unlikely.  I've never read of RT as a salvage therapy for NLPHL, but that of course does not mean that it has never been tried; perhaps some reader here will share.   Until a few years ago, stem cell transplantation (SCT) was the most common second-line approach.

    Please share all developments, since ours is a rare disease with few established protocols,

    max

    Hi Max

    Hi Max, Any info on the new drugs used against NLPHL relapse?  

  • Zentao
    Zentao Member Posts: 5
    edited July 2018 #24
    Bill_NC said:

    Thanks Zentao

    you had no relapse for 15 years what your first treatment was ?  mine was ABVD alone. I checked under your name and did not see any blog. not sure where to go to read the blogs. 

    Hi Bill,

    Hi Bill,

    My first time was a stage IA located in head & neck. I noticed a fairly big lump which turned out to be NLPHL. 

    The treatment I had at the time was radiotherapy only, something called "mantle field" (which was a form of extended radiotherapy). I believe extended fields are now considered obsolete, at least for this type of cancer as an approach. In both situations given that prognosis was good a lot of the discussion around treatment has to do with minimizing long term effects. 

    Hope this helps!

  • Bill_NC
    Bill_NC Member Posts: 133

    Fifteen Percenter.....

    Hey Bill.

    I'm very disappointed to hear of your apparant relapse, something that occurs among around 15% of all NLPHL patients.  I have my own annual oncology check this week. I'm in a lifetime followship program run by my cancer center.  I had a CBC a few months ago after an ER visit due to extreme blood pressure, and it was all normal, but I have been having extreme itching for a few months now also, so checking is well advised.  I have not had any other symptoms.

    I have read some articles this year about new drugs used against relapsed NLPHL, some of which show substantial promise. I will look for those.  You must have a biopsy, since NLPHL often (not usually, but often) does not return as NLPHL, but rather as different strains, often Large-B NHLs.  To treat properly, exactly what the node is must be established.  But an irony of this is that Large-B is easier to permanently eradicate than indolent HL anyway.

    Radiation therapy (RT) as a treatment is highly unlikely.  I've never read of RT as a salvage therapy for NLPHL, but that of course does not mean that it has never been tried; perhaps some reader here will share.   Until a few years ago, stem cell transplantation (SCT) was the most common second-line approach.

    Please share all developments, since ours is a rare disease with few established protocols,

    max

    Thought of sharing this link

    Not sure if the same what you read about

    https://www.esmo.org/Oncology-News/Ibrutinib-First-FDA-Approved-Therapy-for-Marginal-Zone-Lymphoma

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,688 **
    Bill_NC said:

    Thought of sharing this link

    Not sure if the same what you read about

    https://www.esmo.org/Oncology-News/Ibrutinib-First-FDA-Approved-Therapy-for-Marginal-Zone-Lymphoma

    Strain

    Bill,

    What your doctors must first do is establish what strain of lymphoma (if any) you now have. Scans cannot prove cancer, and even if the did, there are over 60 known varieties of lymphoma, and treatments differ radically, depending on strains.

    "Marginal zone" cancer is different from NLPHL, so no, that study most likely is irrelevant to us.  You mentioned somewhere that because you had previously received chemo, your next trerapy would "not be chemo."  That statement is more than 99% likely to be incorrect.  Virtually all salvage or second-line (these terms are synonomous, mean the same thing) therapies for all types of lymphoma are chemotherapy combinations of some sort.

    I recall back when you were in initial treatment. You very frequently though that things were not working, that problems were emerging: but they never did.  Let us know as soon as you have a certain, definitive diagnosis.

    Pulling for you again, buddy,

    max

  • Bill_NC
    Bill_NC Member Posts: 133
    edited July 2018 #27

    Strain

    Bill,

    What your doctors must first do is establish what strain of lymphoma (if any) you now have. Scans cannot prove cancer, and even if the did, there are over 60 known varieties of lymphoma, and treatments differ radically, depending on strains.

    "Marginal zone" cancer is different from NLPHL, so no, that study most likely is irrelevant to us.  You mentioned somewhere that because you had previously received chemo, your next trerapy would "not be chemo."  That statement is more than 99% likely to be incorrect.  Virtually all salvage or second-line (these terms are synonomous, mean the same thing) therapies for all types of lymphoma are chemotherapy combinations of some sort.

    I recall back when you were in initial treatment. You very frequently though that things were not working, that problems were emerging: but they never did.  Let us know as soon as you have a certain, definitive diagnosis.

    Pulling for you again, buddy,

    max

    Thanks Max

    As always I feel you have a lot of knowledge about the subject matter than Some ONC out there. 

  • Bill_NC
    Bill_NC Member Posts: 133
    PET Scan Update

    I did the PET scan yesterday and got a call from ONC last night. The swollen 2 nodes in left external iliac adenopathy (abdomen left side) are HOT for activity (registered at 6.9 as 3.3 or less is normal) Also another node under the right armpit but it shows a weak activity (at 3.6 a little bit above the normal).So I am waiting to be scheduled for laparoscopy.

    Not sure why my ONC ask me to cancel all my vacations plans for August and beyond, and want to start the treatment right after identifying the cancer type. Made me a little worry and I am really scared if the ONC recommend going for SCT although I don't have as many hot lymphomas as 5 years ago. I can admit my level of anxiety is not high and not even close to what it was 5 years ago, but still worrisome.  

    I appreciate your thoughts on this.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,688 **
    Bill_NC said:

    PET Scan Update

    I did the PET scan yesterday and got a call from ONC last night. The swollen 2 nodes in left external iliac adenopathy (abdomen left side) are HOT for activity (registered at 6.9 as 3.3 or less is normal) Also another node under the right armpit but it shows a weak activity (at 3.6 a little bit above the normal).So I am waiting to be scheduled for laparoscopy.

    Not sure why my ONC ask me to cancel all my vacations plans for August and beyond, and want to start the treatment right after identifying the cancer type. Made me a little worry and I am really scared if the ONC recommend going for SCT although I don't have as many hot lymphomas as 5 years ago. I can admit my level of anxiety is not high and not even close to what it was 5 years ago, but still worrisome.  

    I appreciate your thoughts on this.

    Not confirmed

    Bill, the doctor is making progress in figuring out your nodes, but as you know, nothing is confirmed. A PET result can be highly suggestive, but cannot confirm lymphoma or other cancer.

    It is premature for your oncologist to suggest a SCT, not knowing what type of lymphoma you may have, if any. You are somewhat younger than me, and in that sense a SCT would make more sense for you than in my case.  I am not "too old" for one (62), but would simply demand something less radical, at least for a time.

    I do believe that we get desensitized to cancer, at least to some degree.  Not everyone, but many people.  A friend at church has a wife who was advanced Stage IV peritoneal cancer. It is an aggressive cancer of the lining in the abdominal cavity, indirectly related to ovarian cells, and often mistaken for ovarian cancer when it occurs (most patients are women, but rarely men get it also, just as occasionally men get breast cancer). This has around a 20% prospect for cure. She has been remission, but had a scare a month ago.  They were calm, even placid.  They have hope, but will not be shocked if a doctor one day says the end is near (there is basically no real second-line therapy for peritoneal cancers). Her husband told me one evening regarding relapse, "Well, you know, the chances are only 20% or less. We are just enjoying things day-by-day."  He then smiled slightly. They know.  Peritoneal cancer, like many other cancers, is much closer to a 'death sentence' than virtually any lymphoma diagnosis, even with multiple relapses.

    When I went for my prostate biopsy in 2014, which I was reasonably sure would be positive, getting confirmation from the urologist was a huge yawner.  I told her thanks, and that we were planning to go see a radiation oncologist and urological surgeon for opinions, whom I had already picked out beforehand.  There was no drama at all, no emotion really.  I don't know if it is better or worse to get to that point, but it does happen.  I "'cared," but it just didn't elicit an emotional response from me, or my wife either, remarkably enough.  Her attitude was simply, "Let's get to work on this new thing now."  

    In a way, a relapse of NLPHL would be not the worse news on earth, since some doctors will simply run a combination chemo again..  But a more aggressive strain, like Large B long-term might be better in a roundabout way, since when aggressive NHLs are killed off, they are more likely to stay gone. But all of this is speculative at the moment.

    Your next step is the biopsy. Until then, nothing is certain or predictable.

    max

  • Bill_NC
    Bill_NC Member Posts: 133

    Not confirmed

    Bill, the doctor is making progress in figuring out your nodes, but as you know, nothing is confirmed. A PET result can be highly suggestive, but cannot confirm lymphoma or other cancer.

    It is premature for your oncologist to suggest a SCT, not knowing what type of lymphoma you may have, if any. You are somewhat younger than me, and in that sense a SCT would make more sense for you than in my case.  I am not "too old" for one (62), but would simply demand something less radical, at least for a time.

    I do believe that we get desensitized to cancer, at least to some degree.  Not everyone, but many people.  A friend at church has a wife who was advanced Stage IV peritoneal cancer. It is an aggressive cancer of the lining in the abdominal cavity, indirectly related to ovarian cells, and often mistaken for ovarian cancer when it occurs (most patients are women, but rarely men get it also, just as occasionally men get breast cancer). This has around a 20% prospect for cure. She has been remission, but had a scare a month ago.  They were calm, even placid.  They have hope, but will not be shocked if a doctor one day says the end is near (there is basically no real second-line therapy for peritoneal cancers). Her husband told me one evening regarding relapse, "Well, you know, the chances are only 20% or less. We are just enjoying things day-by-day."  He then smiled slightly. They know.  Peritoneal cancer, like many other cancers, is much closer to a 'death sentence' than virtually any lymphoma diagnosis, even with multiple relapses.

    When I went for my prostate biopsy in 2014, which I was reasonably sure would be positive, getting confirmation from the urologist was a huge yawner.  I told her thanks, and that we were planning to go see a radiation oncologist and urological surgeon for opinions, whom I had already picked out beforehand.  There was no drama at all, no emotion really.  I don't know if it is better or worse to get to that point, but it does happen.  I "'cared," but it just didn't elicit an emotional response from me, or my wife either, remarkably enough.  Her attitude was simply, "Let's get to work on this new thing now."  

    In a way, a relapse of NLPHL would be not the worse news on earth, since some doctors will simply run a combination chemo again..  But a more aggressive strain, like Large B long-term might be better in a roundabout way, since when aggressive NHLs are killed off, they are more likely to stay gone. But all of this is speculative at the moment.

    Your next step is the biopsy. Until then, nothing is certain or predictable.

    max

    Surgery on Monday.

    Thanks, MAX. I just got back from the surgeon office as they had an opening today.  (Yesterday I did PET and today I am at the surgeon Smile).  I have been scheduled for surgery in 3 days on Monday 7/16. He said he will use the laparoscope first. If it fails he may do a 6-inch incision to get the node as it's buried in fat. Until then I will pray to GOD all go well. Until then I will try to stay calm and enjoy these days before starting treatments if needed. Will update you on the results from the pathologist. 

  • Bill_NC
    Bill_NC Member Posts: 133

    Hello All, it's been a wild ride last month, I did the surgery and thank GOD the surgent was able to do a laparoscopy instead of an incision (My Prayer was answered). Also he was able to get both nodes in the abdomen, I was able to set and work the next morning. then the waiting game for the pathology results.

    Two weeks later I had an appointment with surgent and still no results form the pathologist. The surgent gave them a call and they said it's most likely a lymphoma but they can't determine the type and they sent it to Washington DC for a second look by a lab consultant and I been told it was  (The Johns Hopkins Kimmel Cancer Center) in DC. a 3 days later the results came back negative for cancer it was a hyperplasia (An increase in the number of cells in an organ or tissue. These cells appear normal under a microscope. They are not cancer, but may become cancer.).

    The oncologist said will wait for 3 months and do another PET scan to check for the node under the armpit and make sure no other node enlargement. and if the under armpit got larger then will have to extract it and check it. For now, I am trying to enjoy every minute and stay positive until October scan. 

  • illead
    illead Member Posts: 873
    Such good news

    I am so happy for you, it has been so nice to hear from you again but knew you were going through a lot.  So glad it had a happy ending.

    Don't be a stranger Wink

    Becky

  • illead said:

    Such good news

    I am so happy for you, it has been so nice to hear from you again but knew you were going through a lot.  So glad it had a happy ending.

    Don't be a stranger Wink

    Becky

    Wonderful

    Great news, Bill.  I have been busy for some time now with personal issues and just saw your results a moment ago.

    As you saw over the last month, I had my doubts about your nodes being lymphoma.  May you get back to some peace of mind and be well forever !

    max

  • joemchicago
    joemchicago Member Posts: 3
    edited October 2018 #34
    Got NLPHL diagnosis Oct 11

    Hi everyone,

    My name is Joe and finding this forum was the best news I have had since getting my diagnosis last Monday of NLPHP.  I read lots of articles on the web but none talked about NLPHP in the abdomen.

    CANCER DIAGNOSIS

    I am being seen by a major medical center that is in the National Comprehensive Cancer Network (NCCN).

    Strong abdominal pain caused me to go to the ER in mid July, 2018; my CT showed enlarged lymph nodes in the abdomen suggesting cancer.  The strong pain went away and I have not shown any B symptoms; however, I lost about 7 pounds from my last regular physical 18 months ago, I get very tired at least a few evenings per week before bedtime, and I infrequently get light abdominal pain.  In early August, the first core needle biopsy of my upper right mesenteric node (bi-lobed 6cm) was negative for lymphoma, and so the doctor said to redo the CT in 3 months.  But after a delay of about 3 weeks of not getting my questions answered on the pathology report, I finally got connected with a hematologist/oncologist who recommended a PET scan which got done at the end of September.   The PET showed high metabolic activity in three enlarged lymph node areas: lower left mesentery, upper right mesentery (bi-lobed), and para-aortic retroperitoneal.  

    The second core needle exam was of the node showing the highest metabolic activity: the left lower mesenteric node (4cm).  The pathology report made a diagnosis of nodular lymphocyte predominant Hodgkin lymphoma (NLPHP), and the comment stated “This is a small biopsy but the morphologic and immuno phenotypic findings are most consistent with the above diagnosis.”

    Flow cytometry showed “T-cells with increased CD4:CD8 ratio (8:1), but otherwise an unremarkable phenotype and a polytypic B-cell population.”  Immunohistochemistry showed the following: CD20 (Some positive small B cells clustering within follicles and several large cells.).

    A later supplemental pathology report stated:  “The following immunohistochemical stain were performed on block A1:  IGD Highlights many B cells localizing to follicular dendritic cells meshwork.  OCT2 Highlights small B cells and is strongly positive in large atypical cells.   Interpretation: These findings further confirm the previously rendered diagnosis.”

    The hematologist/oncologist said I have Stage II NLPHL though I am trying to find out if it is advanced or just unfavorable.  She strongly recommended six 21-day cycles of R-CHOP starting early November with at least 3 more PET scans over the next two years. Because of the abdominal location of the enlarged nodes, she said radiation would be too risky and that I was at a greater risk of transformation to a very aggressive form of Diffuse Large B Cell Non-Hodgkins Lymphoma, and that starting therapy soon would be helpful.   I forgot to ask her about surgery but my wife thought surgery would also be too risky because of the location and in any event surgery wouldn’t help much because the cancer is in the lymphatic system.

    OTHER HEALTH INFO

    I will be 62 next month and look like a string bean (151 lbs and 6’2”).  I have had restless legs syndrome for several years and was diagnosed with probable irritable bowel syndrome (IBS) over 15 years ago, and with budding BPH (prostrate starting to harden and enlarge) about 18 months ago.  Apparently the prostrate is causing my nighttime urination which wakes me up in the middle of the night 2-5 times a week.  For the IBS I have been taking Citrucell (bulk fiber tablet) and for a Vitamin D deficiency I take a supplement.  Despite the foregoing and my cancer diagnosis, I feel pretty good and think I am otherwise generally in good health (I walk 60-90 minutes a day spread out in a few sessions).

    QUESTIONS

    Any thoughts on the following questions would be immensely appreciated.  I fully understand that per the terms and conditions of this Discussion Board I am not to construe any responses to my post as medical advice that I can rely on. Despite that I would be grateful for your opinions and responses.  

    1) Are there any credible sources of detailed statistics on a) survival rates, and b) major health problems or fatalities resulting from R-CHOP?

    2) Any medical centers that have doctors with substantial experience in diagnosing and treating NLPHL?

    3) Typical quality of life after R-CHOP?

    4) My doctor did say other medical centers may not use R-CHOP and further said they do not use ABVD.   What does the literature possibly say about whether there is a clear optimal treatment for someone with my background?

    Thanks!

  • po18guy
    po18guy Member Posts: 1,221 **
    A lot of ground to cover

    Of all Hodgkin's lymphomas, NLPHL is on the cusp of being declared a non-Hodgkin's. It is substantially different and for that reason, R-CHOP iseems to be the gold standard. ABVD is a classic Hodgkin's regimen, for the classical types of Hodgkin's. As to where the cancer presents, it is pretty much all the same, unless in the central nervous system is involved. It is a cancer of the immune system and thus it can and does flow everywhere in the body. But, so does the treatment.

    To me, aggregated survival rates are immaterial. They apply to no one in particular, being a statistical construct for data collection purposes. You, as an individual, either survive or you do not. So, we aim for survival. Classical Hodgkin's has an 85-90% cure rates - somewhat lower with NLPHL. Keep in mind that the default is 100% mortality if untreated - everything must be compared to that default. R-CHOP is far from the worst. 

    At 62, I would not get terribly hung up on chasing the cure, as that can actually shorten your life. You may be placed in lifetime remission, and that should be the goal, but not at the expense of substantial quality of life. As to NLPHL specialists, no clue there, so a Google search might be best.

    You may have some lingering side effects from treatment, or they may clear up - it is all very individual. Possible heart issues 5 or so years down the road (or not), and maybe some peripheral neuropathy from the Oncovin (Vincristine) in the CHOP.

    As to your background, the treatment is aimed at the type of lymphoma. The dosing of that treatment is tailored to your general health. Everything is closely monitored. ABVD is known for both heart and lung toxicity, so best to avoid that if at all possible. There are probably numerous individuals in this forum who have gone through R-CHOP, as that has become the most popular treatment in B Cell Lymphomas, of which NLPHL is one variety.

    For some perspective, as to quality of life, I have had CHOEP-14, GVD, single agent salvage regimens of Romidepsin, Pralatrexate, Belinostat, Alisertib, and a 5th salvage regimen of TEC ( Bendamustine, Etoposide, Carboplatin) as well as intrathecal Methotrexate, and triple-dose Cyclofosfamide both before and after a stem cell transplant. 18 anti-cancer drugs in total, as well as the equivalent of 1,000 years of backgrpound radiation. Post-transplant, I received Ofatumumab (similar to Rituxan) and an experimental drug called KD025, which is a ROCK2 inhitor, seeking a solution to chronic Graft-Versus-Host-Disease (cGvHD).

    Percentage? I was given a 99.5% chance of succumbing to one of the three cancers I have had since 2008. For that reason, I pay no atention to prognosis. Mine began as poor, dropped to extremely poor, and dropped several times after that.

    I have a ton of co-morbidities, but life is still worth living. All of the aforementioned took place from age 56-66. What has affected my quality of life the most is the immune suppression drugs to control transplant rejcection issues (GvHD). The bottom line is that our bodies can absorb and tolerate much more than we think. 

  • po18guy
    po18guy Member Posts: 1,221 **

    The Lymphoma Research Foundation is the 800 pound gorilla of the lymphoma world. From the linked page, they have both a downloadable fact sheet as well as a 140+ page booklet that thoroughly explains NLPHL.

    https://www.lymphoma.org/aboutlymphoma/hl/

  • joemchicago
    joemchicago Member Posts: 3
    edited October 2018 #37
    Thanks to topo18guy
    Thank you very much for the thoughtful and insightful comments!  I really appreciate your taking the time to help me with this.

    Take care, Joe
  • Thanks to topo18guy

    Thank you very much for the thoughtful and insightful comments!  I really appreciate your taking the time to help me with this.

    Take care, Joe
    Welcome, Joe

    Welcome to you Joe.

    If you go through this discussion thread above, most of your questions are probably answered, and there is a lot of otherwise useful information as well.  I do not have time to re-read it all, but will say a few things. I will be repeating much of what I wrote above, or what others said.

    I got NLPHL at 53, advanced Stage III. Everywhere from the neck to around the pelvic area, and across from armpit (axillary) to armpit -- everywhere.  I am now 62, so have been clean for over 8 years now.

    My doctor told me that my "odds" for total remission (no evidence of disease), or "NED" was around 60%.  He said that he was using the numbers of a 60 year old man.  Older statistics are just that, older, and life expectancy for almost every form of cancer is always going up, but not much has changed in the world of NLPHL.  It is a mostly neglected strain, due to great rarity, and the fact that it is already easy to control.

    The definition of "early" for NLPHL is Stages I and II, and "advanced" is defined as Stages III and IV.  But stage at diagnosis is not highly critical with most lymphomas, unlike organ cancers. Stage IV is commonly as easily cured as Stage II, for instance.

    An aspirational biopsy ("needle draw") is not nearly as good as an excised (surgically removed) biopsy.  NLPHL is fairly oftenly MISdiagnosed, and when it is misdiagnosed, it is usually a T-cell disease, which are extremely rare and difficult to control.  I would ask your oncologist how certain they are that the diagnosis is absolutly correct before beginning.  A second review of the sample at another lab is a very reasonable request, and not a lot of money, even if paid out of pocket.

    Whether you use R-ABVD or R-CHOP, NLPHL nearly always goes straight into complete remission. You will receive either 4 months or 6 month's worth of chemo, based on the oncologist's judgement.  Because some of the drugs are vesicants, or blister agents, an IV port is highly advised; many cancer centers require an IV port to administer vesicants, but some do not.

    I am unaware of prominent hematologists who specialize in NLPHL.  It is just too uncommon, apparantly, and is in essence treated by all oncologists as an indolent HL.   Be sure that you do get the Rituxan, however. NLPHL is the ONLY form of Hodgkin's that expressed the CD-20 cell, which is what Rituxan works against.

    I have read of a few doctors approaching NLPHL with just Rituxan, and some others treat relapsed NLPHL with just Rituxan.  But first-line, for permanent cure, R-ABVD or R-CHOP are almost always employed. Bendamustine and Rituxan ("B&R") has been showing promise with NLPHL.  B&R is now used against numerous NHLs with low toxicity.

    Bottom line: NLPHL is easy to beat, and easy to control. It is somewhat given to relapse (15%), but relapsed disease is easy to control also.  There is no cause for panic or distress with your given particulars.

    Three years ago I got a new diagnosis: Prostate cancer.  Prostate and lymphoma are wholly different, unrelated animals, but you mentioned prostate issues.  Feel free to use the private email funtion here at the Boards to ask prostate questions if you wish.

    Write with followup questions as they occur to you,

    max

  • joemchicago
    joemchicago Member Posts: 3
    edited October 2018 #39
    Thanks to Max
    Hi Max, I really appreciate your very helpful comments and all the comments you posted above.  You have a big heart that is making a big difference for many of us.

    Take care, Joe
  • Iluvlucy
    Iluvlucy Member Posts: 26 **
    Website crash booted me out.

    I got booted out with the website crash.  I'm early on in my NLPHL journey.  I have met some of you in this discussion board and it has been very helpful to network with others.  I was dx with NLPHL on 1/2/2019.  Had CT of chest/abd/pelvis and PET.  Have been staged at IIIA due to positive nodes in my right armpit and mesenteric nodes.  I've never felt sick, in fact feel fabulous physically.  I haven't missed a day of work in over a decade, no colds, flu, etc.  I found a lump in my R armpit this summer, which is the same area that had a core needle biopsy 4 years ago and came back "normal".  Fast forward 4 years later I have this lump.  Doc wanted to do a mammogram first that came back normal.  I was supposed to have an ultrasound done at the same time but the imaging dept refused to schedule it until the mammo results were in and then they were to call me to schedule, but they never did.  Meantime, my husband and I found our dream home and within 24 hours had an accepted offer and the process of mortgage and move occupied my mind and time.  Once we were settled in I reached out to my doc and got the ball rolling again.  Ultrasound showed large nodes, so had them excised and the path report came back  positive for NLPHL.  I have not agreed to any treatment at this time as I am in the process of getting 2 more opinions at large cancer centers.  I am a nurse in the industry and am having to do far more advocacy for myself than I thought I would need to.  I have to double check everything that professionals and staff say they are going to do as I have found too many miscommunication and assumptions that have delayed my workup and interrupted my path to treatment.  I just had to call the cancer center that my Hem/Onc wanted me to have a second opinion at and the treatment center hadn't contacted me in days.  When I talked with the nurse assigned to my case, she told me that she didn't move forward with my referral as she thought I had already started treatment and she also thought I was dx with classic hodgkins lymphoma.   I'm frustrated at this point.  I don't want to go down the path of traditional chemo as I know these drugs, I've administered these drugs and am terrified.  I don't want to lose my hair and am tired of people saying "it's only temporary".  That minimizes my feelings and makes me angry.  Hair loss is demeaning to me, and I won't be able to work full time, so in essence I will feel sick, have my paycheck affected and lose my dignity for this cancer that if not for the lump, I'd have never known anything was abnormal.  Anyhow, that's my story and my rant.  I'll get through this but am not looking forward to the next 6-8 months of my life.  I have a very strong faith and an incredible posse of family and tons of friends who have worked in hospitals with me, oncology, hospice, and Palliative Care for the past 31 years.  If you've made it through my post to this point, bless you, you have patience.  

     

    Paula

  • ShadyGuy
    ShadyGuy Member Posts: 713 **
    Suck it up and adapt

    adapt and overcome. We all have similar emotions about diagnosis and some amount of whining is expected. But we adapt to it. Really there is no reasonable alternative. I was screaming along in my dream job, flying all over the world, feeling good, always had long hair and was never ill, not even a cold. The hammer fell. Suddenly the French company I worked for let me go because I was unable to constantly travel. I could have sued them but that’s not my style.  I was sick a lot and eventually I had chemo and lost my hair. Now I see that I don’t miss the travel, my wife loves my crewcut and I spend lots of time in the woods. I am happy to just still be looking down at the grass and playing with my grandkids. Its my new normal. I hope you find yours. You are curable, but accept the fact that there are hard times ahead and things will never again be the way they were. You shall overcome and you will be a better person. Its just life.