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Round III

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Based on a chest CT this week, I likely have relapse of some form.   Docs working on scheduling a biopsy to confirm or rule out.

"It pays to stay current."

illead's picture
illead
Posts: 863
Joined: Aug 2012

I know you are hanging in there, we will be thinking of you and know you are in good hands. Please keep us updated.

Becky and Bill Frown

po18guy
Posts: 1121
Joined: Nov 2011

what I am sending heavenward for you.

PBL
Posts: 256
Joined: Jul 2016

to read your latest news, Max. I assume it must have been caught early, if it is based on a routine CT in the absence of other signs or symptoms. Will be looking for your updates, hoping for the best.

PBL

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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I am fortunate to be in a Lifetime Followship Clinic, and go annually for a CBC and assessment from an NP, including touch exam.   My CBC was 100% normal, and she detected nothing tactically, but heard rales (grating breathng sounds) in my lungs.   Referred to x-ray, then to a CT.   The CT was thoracic (only), and saw a fairly large node, right axillary.   So neck and pelvic area not checked, but most lymphomas begin in medial region or chest-axillary, which thhis scan covered.  Therefore, hoping Stage 1.   Now I have a matched set -- my biopsy 11 years ago was of the left axillary Wink.

Based upon the node size and my medical history, very likely malignant.   As I said, I hope to have a biopsy scheduled by next week, will update.

Not everyone at my Cancer Center is put in lifetime followship, only people with statistically significant chances of recurrence.  I advise it for everyone if it is available to them.

Since the discovery is only one node, and not a cluster, I am thinking not NLPHL again, but something more like a large-B NHL.  Las Vegas always liks my numbers.

I am 100% calm and ready to be dragged out of patient retirment and back in to the fight, if required,

max

Lym999
Posts: 34
Joined: Feb 2020

Max,

 

I am sorry to hear about your recurrence. I noticed you have been at this for a while now and seemed to have done plenty of research. My Lymphoma was the Diffused Large B-Cell from a chest node near my right lung. It then spread into my lung and Spleen and had a major effect on my overall breathing. It had grown so fast that it had covered nearly my whole lung along with my Bronchial tube in a matter of no time. The fact that it had been located on both sides of the Diaphyam made me stage 3 automatic, but as you probably know with Lymphoma the stage in most cases isn't a great factor.

I will say this that R-chop cleared most of my lung in just one treatment. I still of course had to do 6 treatments in total but it was nice to be able to breathe again. It had been hard to even sneeze or yawn because it had been so bad. You sound like you are very early in the process and that is very good!

Did they show you your Ct scan? I know mine was very visible in the lung.

 

John

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Lym, I have not yet seen the CT, since it has not yet been posted to MyChart.

I had a lot of breathing issues during chemo (which was 10years ago), but because of lung toxicity from either the Bleomycin (a drug in ABVD), or extreme stomach acid, or both.  I did not last time have known tumors in the lungs, and none have been noted over the phone to me this time.   I have about 20 % loss of lung volume from fibrosis.

The oncology center sent me to my pulmonologist due to rales, not because of any felt node, and he then ordered a CT, after seeing my X-ray, which he regarded as suspicious.   The thought then was that perhaps I had lung cancer, because I had a node discovered a few years ago that had to be tracked two years, wbut which was judged benign.   In a way, I am much luckier to perhaps have lymphoma again than lung cancer, because the survivability of lung cancers are way less than for nearly all lymphomas.

 

Lym999
Posts: 34
Joined: Feb 2020

Max,

 

I was told by two different doctors that I at first had lung cancer, only to find out it had been Lymphoma after the biopsy. I know on my Ct scan you could easily see cancer throughout my right lung. I never smoked a day in my life and had been in good physical shape up to that time. You are right about the survival rate of lung cancer compared to it being Lymphoma. My Lymphoma had grown extremely quickly throughout my right lung to the point I could hardly breathe at times. I'm hoping like you have said that if it ends up being something serious that it is Lymphoma and not lung cancer. I am wishing the best for you!

 

John

PBL
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Who would have suspected you could go to such extremities for the sake of symmetry!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Next (if necessary) will be a matching port hole on the right, to balance the current one on the left !

 

Lym999
Posts: 34
Joined: Feb 2020

Max,

 

Do you still have your original port still in you? I just had mine removed just 6 months after finishing my chemo. I didn't like it at all the way it felt inside me.

PBL
Posts: 256
Joined: Jul 2016

get ahead of ourselves...

Seriously, though, if it is indeed taken early in its course (BTW: When will they fit in a PET scan?), and considering the current trend toward less toxic treatment, you might just be able to do without a new port.

Here's hoping for the best!

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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You are totally correct on all points, PBL.   {{ IF }} it is just one node, radiation will likely be a viable option, with perhaps an infusion or two as adjuvant.   I have written here for years that, if an option, I would steer AWAY from SCT or other horrid therapies, at least initially.

John, my onc wrote the order for my port removal the day he announced to my wife and I hat I had N.E.D., so it has been gone over ten years now.

po18guy
Posts: 1121
Joined: Nov 2011

...if even one-tenth of our worries and fears came to pass. In the broad sense, worry is worse than cancer, as by itself it can ruin even the healthy. Something has carried each of us this far - occasionally through much worse than we now face. It will carry us through this as well. Everyone has faith in something. Yet, that faith must be reasonable - it must have a firm foundation. The following was engraved into a walking stick made for me by a fellow lymphoma patient:

"What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see."

- Hebrews 11:1   

ShadyGuy's picture
ShadyGuy
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To your full revovery Max.

Evarista's picture
Evarista
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Here's hoping that your doctor is wrong!  But if it is indeed a relapse, wishing you a safe and speedy recovery.  And should you have the great good fortune (misfortune, more likely) to get PICC lines instead of a port, hit me up for tips on how to live with them fairly painlessly.  Best of luck going forward.

-Evarista

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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I met with the surgeon this morning.   He showed me the nodes -- there are more than one.

The largest is 5.2 CM long, 2.5 CM diameter.   Looks like an uncut dill pickle....

Excise Thursday morning.   Thank you to all....   I'm not going to write here again until Friday.

 

po18guy
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ascending on your behalf.

Rocquie's picture
Rocquie
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 . . . you are in my heart.

Rocquie

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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That's about the best place a person could be in this world, R

Sandy Ray's picture
Sandy Ray
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You are in my prayers.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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I had the surgical removal of the huge node yesterday, proceedure reportedly went fine, although the surgeon could not feel it beforehand, and had to use an ultrasound in the OR to guide the incision.   It hurt very bad first day, is a bit milder today.  He told my wife in the waiting room while I was in recovery that "There is no way this is not cancer."  I do not know what that was based upon, but have no doubt that he is correct.     I continue to believe that this is no longer NLPHL.  It has almost definitely morphed into something more aggressive.   Surgeon said pathology reports come faster than they used to, and I should hear something by Mon or Tuesday.

My former M.O. has retired, but I am now going to be treated by a fantastic woman who is a specialist specifically in hematological cancers, and who does research.  She is also one of the few doctors in the group who can lead S.C.T.s    

I feel no anxiety at all.   Some worry, definitely.    I most likely won't log back in here until Monday or so.  Bless everyone for their kind thoughts, here and via P.M.

Lym999
Posts: 34
Joined: Feb 2020

Wow, That was a surprise! I am hoping for the best for you. My biggest fear isn't about getting Lymphoma again, but another kind of cancer down the road. Was the node removed from the lung area?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Headed down the Yellow Brick Road to the oncologist in about an hour.   Of course, 'nothing'  available at My Chart-- no results.  I do hope the doc will have them.

An interesting little dvelopment:  my hospital system began transformation into a new medical group about a year ago.   Pretty soon, it will seemingly own most hopspitals in SC west of the coast, where some other powerhouses are ensconced in such a way as to never lose their monopoly in that region.   They are changing their MYCHART posting practices:  Beginning in November, as soon as a result or lab is completed, it goes straight to My Chart, with no doctor release required.   I rejoyce at this.   Doctors have monopolized and sat on this information for too long.  Of course I have no idea whether this policy will effect MyChart in other areas.

LYM,   my biopsy node was just below the surface, front axillary (armpit), not near the lung.   The symmetry with my 2009 left incision would be perfect, except that this new one is 4.25 inches long.  It hurt terribly for sevelar days, and I still have a little trouble lowering the arm down.  The surgeon felt for the node just before rolling me back to the O.R., but still could not feel it at all; repeated that he would have to guide his incision via ultrasound.

I am thinking some form of leukemia, but I do hope for the best.  I just pray for a treatable/managable disease that is not rapidly fatal.  PBL, I have been sleeping all day, every day, and have not seen your link yet, but thank you dearly, I will get to it.

PBL
Posts: 256
Joined: Jul 2016

Glad that is done and you won't have to wait for too long for a definitive diagnosis and treatment plan.

Here is a link [https://ashpublications.org/blood/article/127/16/1946/34834/New-insights-into-NLPHL-transformation]  to a little semi-recent article on your current preoccupation from the ASH website - I hope you find some reassurance in reading it (if you haven't already) - and hope it is indeed more of the same, which may be the least unfavorable possibility.

PBL

po18guy
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Joined: Nov 2011

would not normally manifest itself outside of the marrow and bloodstream. AFAIK, that would have lead to obvious symptoms, such as anemia, bleeding or infections. But, pathology has the last word here.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Today's trip to my new onc was a total waste.   In fact, her nurse came out and told my wife and I to go home before I met her, because they still did not have my results.....  I was wondering: They didn't know this yesterday ?

The onc's office called later in the day, saying that she had called the pathology lab herself, and they told her that they could not determine what disease it is, and were forwarding it to a more sophisticated facility.   Proceeding at the speed of modern medicine.....   I have a sister-in law who, about 12 years ago, developed lumps all inside both lungs.   At first, the docs thought lung cancer, then lymphoma.  A team of pathologists, a pulmonologist, and medical oncologist took OVER A YEAR to determine that she had (has) sarcoidosis.  I am not making this up.    Best advice I can give is, be sure yor cancer is slow-moving.

po18guy
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Hope that SIL is OK now! Sarcoidosis is not an affirmative diagnosis. Rather, it is a blanket term that describes various considitions that do not fit any other diagnosis. Thought I might have had this in 2015 and doctor replied "We can't rule it out" but you know what it ended up being. Fortunately, many cases of sarcoidosis resolve - but it can be rather nasty as well.

It is a good sign that your local path lab is sending your tissue out. Since they must know what they were looking for from your prior diagnosis, you would almost certainly know by now if it was a relapse. It just might be one of the many type of HTI lymphoma - Hard To Identify. Although....there are a number of benign lymphoproliferative conditions. Good news: being non-cancerous, they relieve one's headache. Bad news: They just cause a different headache. Such is a pilgrim's journey.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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My surgeon, as he revieved my timeline and the CT, mentioned something to me about CLL, but I don't know why that in particular came to his mind.

Otherwise, still a nothing burger, with extra nothing on the side.

ShadyGuy's picture
ShadyGuy
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(a horrible experience - nearly killed me - went in for day surgery and ended up staying 8 days)  was looked at locally then sent to a lab in Massachussets and also to a second lab in California. The second lab  then requested a BMB be sent to them. It took 3 weeks to get definitive results. Hope yours go better and faster. Curious coincidence because the radiologist who read my initial CT also said it looked like CLL.

 

There's just gotta be a place up ahead where men ain't low-down and poker's played fair. If there weren't, what are all the songs about?

Buster Scruggs

PeprmntPat55's picture
PeprmntPat55
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I hate to hear this, Max. I will be praying for you 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Great to see your lovely face, Peppermint.  Thank you.

I messaged the following to my surgeon and oncologist today, after more 'crickets' on My Chart:

"If I move, or if the postal service changes my zip code,  before my results are back, I will forward the new address information to your office."

Probably running through the airport for a flight to St Lucia, about now.

Sandy Ray's picture
Sandy Ray
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I am still praying for you. The waiting for answers is so frustrating. On my first diagnosis in 2017 they sent my biopsy to 3 places. Finally Elaine Jaffe with National Institute of Health gave a diagnosis.

When it relapsed in 2019 it took the. 24 hours at MD Anderson. Guess they knew what they were looking for.  I hope you get answers soon and it is the best possible scenario. Having you on this forum is a very calming effect for many of us.

Sandy

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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I very much appreciate your kind words Sandy.

I looked up the Pathology group that services our hospital system.   They state that most results are back to the submitting physician 'within 24 to 48 hours.'    They also state on their website that they are as certified and have as good equipment as Duke and Emory medical schools.   I guess they know what they are doing....   Meanwhile, it is now NINE days

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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I went to my surgeon yesterday for routine post-surgical check of the biopsy incision.   He had just that day received some results via e-mail.

The sample was studied in two premiere labs, and signed off on by four pathologists specializing in blood malignancies.   The result is "PTGC, with follicular hyperplasia."  PTGC (which I had never heard of before) commonly accompanies NLPHL (what I had in 2009) and follicular NHL.    It can occur before, during, or after lymphoma, but is often BENIGN, and is not regarded clinically as a precursor to NHLPL, but it does require constant following and possibly scanning.   

I am attaching an article on PTGC.   It should be of interest to anyone dealing with NLPHL, follicular NHL, or simply PTGC itself.

Also, let me mention the site OncologyGo, which I get via Amazon Firestick steaming.  It is also available as an APP,  on Apple TV, and RoKu.    Short presentations by oncologists discussing their latest research.

Needless to say, I am quite relieved, and appreciate all of the kind sentiments shared,   

max

 

To open the link, Highlight, then r click, then hit "Go to......"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5910479/

ShadyGuy's picture
ShadyGuy
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... my day! This is great news Max!

GGc0ok
Posts: 35
Joined: Oct 2020

Hi Max

That's The best news Max. I'm sure your relieved. It's been a long wait for you.  
Your positive attitude and your knowledge has helped many of us.  I'm relatively new here but your words and kindness mean so much to me and many of us.  
Be well my friend 

thank you 

GG

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Nellie4579
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I know the long wait for results was hard but I'm so happy for the good outcome Max!

PBL
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So glad it turns out to be benign, Max!

The article mentions close monitoring and perhaps Rituximab - I assume you've got a hematologist's appointment to discuss that soon...

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Correct:  I expect to meet my new oncologist within a week or so.     PTGC and NLPHL are close play mates, so I will insist on them watching this closely.

po18guy
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Joined: Nov 2011

It "might" be helpful to view this as similar to an Epstein-Barr Virus infection. EBV is associated with some cancers, tags along or piggybacks, but may or may not be an actual cause. I had EBV-caused mononucleosis in about 1973. My first lymphoma in 2008 had no EBV involvement, but the second one in 2014 did. No rhyme or reason is known for that. From the Wiki:

"Most people become infected with EBV and gain adaptive immunity. In the United States, about half of all five-year-old children and about 90% of adults have evidence of previous infection."

Since that in no way correlates to the cancer rates, it remains very mysterious - as do all idiopathic conditions.  

Sandy Ray's picture
Sandy Ray
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Max,

Glad you have some answers. I get my 6 month scan since stem cell next week. They are also going to give me the rest of the stem cells they harvested in March. Hopefully to get my bone marrow working again.

So first I would like a clear scan and then if the stem cell booster would work that would be great. I was so glad to hear you were not headed down the chemo or stem cell transplant path. Hope you have a happy thanksgiving and a merry Christmas!

illead's picture
illead
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What a relief for you and your family and for us.  If Jim was still posting he would have us all doing the happy dance!

Good for you,

Becky

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Thanks Becky, thank you Sandy.  Blessings to all.

 

michael jackson dancing GIF

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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This link is a bit technical, but might interest anyone who has had NLPHL, Follicular, or T-cell disease.

 

https://en.wikipedia.org/wiki/Germinal_center

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Met my new doc recently, and numerous blood tests were ordered.   WHile I have not spoken w/ the doc yet, most CBC stuff was perfect, except for astronomically high TIBC, high  transferrin, and low transferrin saturation.    Most of this is associated with anemia, which I have had before (after chemo ended).   Celiac Disease is a common cause, but I was tested for that years ago when severely anemic.   Had colonoscopy also, normal.     Other common causes are Aplastic Anemia and hemochromatosis.   I know many more tests are headed my way.

po18guy
Posts: 1121
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Unless it is invasive or cost prohibitive (even if it is) might be a good time to be tested for celiac once again. Untreated celiac is associated with  a very nasty T-Cell Lymphoma: Enteropathy Associated T Cell Lymphoma. Kind of the Corona virus of lymphomas - next to Burkitt's. This could also be a long-term effect of the ABVD - who knows? While the hood's up, might as whell check angine and transmission...

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Got results via MyChart today of antinuclear antibody series  ("ANA").     I actually had never heard of this one before.    It was negative.    Reportedly, it checks for indicators that a person may have one of around 150 Autoimmune disorders....

New doctor is being VERY thorough.

ShadyGuy's picture
ShadyGuy
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Despite its imposing name, it is actually a simple test, not expensive. Some consider it an unreliable test with lots of false negatives and false positives.I had it with a hit. Had it done a second time it was negative. Go figger.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Thanks, SG.  Yes, I had read that the results for ANA swing around a lot in any given individual.  Apparantly about as reliable as COVID.   I todate have known personally two people who tested positive for COVID, then negative, then positive again -- both never had any symptoms.   I still have never met, or known of anyone in my circle of acquaintances, neighbors, coworkers, Church members, or relatives, who have even had one day's worth of COVID symptoms.  Not one.   I routinely ask people I encounter, even strangers like cashiers, etc, if they have known anyone with COVID symptoms.  Never had ONE respond 'yes.'   I easily have at leat 50 first cousins, when both sides of the family are counted.  Never has one mentioned a family  member with COVID symptoms.

ShadyGuy's picture
ShadyGuy
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Believe me when I tell you lots of people have had COVID. However for most people the symptoms have ranged from non-existent to easily managed. Three of my five grandchildren tested positive but had nothing more than a sniffle. My neighbors family of six all tested positive and the only ill effect was the little girl had diarrhea for a couple of days. I know of at least three contemporaries whose elderly parents died of COVID. My best friend's brother-in-law aged 62 died of it last week after being ill for only two days. But he had severe diabetes and was overweight so one must ask was it really COVID that killed him? I advise caution but not paralysis in dealing with COVID. Take reasonable precautions but get on with life. Best policy is to avoid unnecessarily being around other people, especially indoor crowds. I know for a fact that cancer patients can survive it quite easily if they are not undergoing chemo or other harsh treatments. Those in treatment have reason to avoid exposure at all costs.

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