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Odd History

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3362
Joined: May 2012

My new next-door neighbor (moved in about a year ago) has had a very odd journey with lymphoma.  He went for extensive testing about two years ago, including the removal of a baseball-sized node.  On other occasions he has had two golfball-sized tumors removed. All tested "negative" for any form of cancer.  His biopsies were even sent to Johns Hopkins, which responded by telling his doc that the tissue was "noncancerous and non-infectious."  A PET at that time also came back totally negative.  Time to scratch one's head.  He has been under "watch and wait" since then, until two weeks ago, when nodes became discernable all over.

He had a CT a week ago, which showed massively enlarged nodes throughout the mid-chest, armpits, neck, groin, and lower jaw.  His neck and face are visibly very swollen.  He went for a PET scan today, followed by a biopsy.  I have met his doctor a few times, and she specializes in SCT, although she also has first-line patients. He said she could not believe it when his tests from two years ago all came back negative.  He expects results in a few days. 

I will  share what he tells me later this week.  I have never heard of such an odd case. Anything remotely similiar that anyone could share is appreciated .

DadysGirl
Posts: 346
Joined: Aug 2011

That Is very scary. Recently after my surgery, I had forwarded my pathology report to my wonderful Dad's stem cell transplant doctor and his exact response in email was thefollowing:

Yes, the report is good. We and the pathologists say "meat never lies". That means whatever there was, it is there on the report. The reports are accurate and the pathologist wouldn't miss anything. 

In my mail to him i had mentioned still a worry on my part and thats how he responded to that.

I hope your neighbor'sresults are something benign.

 

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Max,

 Yes...his situation is more than a little "odd". I get this sinking feeling in my stomach that something/or someone missed something along the way, but I could be wrong.Undecided It will be interesting to hear what you find out. Sue

Anonymous user (not verified)

...... Unless you did not get a totally accurate or totally complete rendition of the story. A lymphoma tumor is just a mass of white blood cells. If that was missed then its incompetence of staggering proportions. oK, for arguments sake, assume it's not lymphoma. Surely they told him what it was as well as what it was not. Fatty tumors come to mind. Were it me, I would be getting copies of the pathology reports to read myself!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3362
Joined: May 2012

GKH,

Four years ago, my sister-in-law's doctor discovered (following a trip to the doc for breathing problems) that her lungs were full of "something," which they initially thought was cancer.  A CT showed grossly enlarged nodes throughout her chest cavity. Several specialists and several biopsies later, it was diagnosed as Sarcoidosis.  Her age was about 45 at the time.

What was most bizarre to me was how many doctors and how long it took for her to get a proper diagnosis.  The "default" opinion of each specialist was that it was lymphoma or lung cancer, until the biopsies proved otherwise.

I have no idea if this is what my neighbor has, but I have mentioned the disease to him already. His "clinical presentation" is quite similiar to my sister-in-law's.

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

max

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DadysGirl
Posts: 346
Joined: Aug 2011

How is your sister doing now?

 

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

She was my sister-in-law.  She is OK.  She stays tired, and has some shortness of breath, but is stable.  The disease is not worsening. Able to baby sit for the grand kids, and has a fulfilling life, so we are blessed with her level of well-being.

I appreciate you asking,

max

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

My neighbor's wife pulled me aside in the back yard this morning to tell me about what they have learned thus far regarding her husband.   She is obviously scared to death ! As a cancer patient, we can never lose sight of how much our family and supporters go through, often without being willing to let on how terrible they feel.

He had a biopsy, bone marrow biopsy, and PET since he last spoke to me.  She said that in the operating room the oncologist herself, plus a a pathologist and vascular specialist were all present with the surgeon. The biopsy results are expected Monday or Tuesday.

She said that the oncologist (with a radiologist present) told her on a different day that the PET shows him as massively consumed with lymphoma, pending the biopsy results. The oncologist stated that he is heavily covered from the jaw, through the neck, both axial regions, the mediastium, his abdomen, and throughout his pelvic-groin areas.  The doctor added that "nodes are especially tighly wrapped around both kidneys." The wife added to me that he is having trouble swallowing due to nodes pressing on the esophagus, and that he is having "routine chest pain."  She also added that "he pours sweat at night."  I asked her if he has had itchi ng spells also, and she said yes, that they were so bad they had bought Benadry to treat it.  I explained a little to her about "B symptoms" in lymphoma.... He has also "lost about 20 pounds recently."

I asked her about how things had got to this point, and she cleared up that a  bit for me. He was placed in "watch and wait" two years ago, but "doesn't like to go to the doctor," and has essentially ignored everything since then until now, when it is beyone the ability to "ignore" any more. She says he knows and accepts that his life is going to revolve around doctors and cancer treatment for a long time to come.  I have met his oncologist a few times, a brilliant lady, who specializes in SCT, but who treats cancers at all stages.  No one could force him to got to the doctor in the past, when she had recommended follow-ups.

I guess his age as about 50.  I stressed to his wife that even very late stage IV lymphoma is almost always very treatable....

 

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Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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My neighbor finally got his diagnosis: an extremely aggressive strain of NHL. His wife could not tell me which one exactly, but will show me the biopsy results soon. He was admitted immediately into the hospital today, after meeting with the oncologist.  She said his escophagus is totally closed, and he  may suffocate soon, if steroids do not shrink the huge swelling througout his neck.  His wife told me he has not been able to lie down to sleep for six weeks -- he has been sitting up to sleep. His legs are massive, and he can no longer walk more than a few steps.

His wife told me after the swelling is reduced chemo will begin, also as an inpatient.

I will share whatever else I learn about this horrific, and so strange case of his.

max

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Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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My neighbor, "J",  began chemo today, r-epoch. He is a B-type NHL, but his wife could not recall which one; her head is swirling with a million things at the moment.

Their daughter is an RN at the same hospital he is in, and she was who knew about the r-epoch.  He had a reaction to the rituxan, which had to be discontinued indefinitely.  His aorta is compressed also now, and they are working hard to reduce the massive swelling he has almost everywhere...

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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"J" is back home with his wife next door, after four days on the oncology floor. He had his first full infusion of R-EPOCH.  He was able, on his second try, to receive his rituxan without a reraction.  His wife  said his swelling has reduced significantly, but remains massive all over. I told her I had heard unpleasant things about Prednisone, and she told me that she had been on it herself a couple of times in the past for some non-cancerous condition, and that she knew it could make him irritable (he was already extremely grouchy from the discomfort, which is understandable enough).

She added that J asked the oncologist "what his chances are," and the doctor went and printed some sort of statistical prognosis generated by some program she had on her laptop (something undoubtedly she had already reviewed).  Unbelievably, she reviewed it with him and told him he has "a 10% chance of living beyond three years."

I know that oncologists are in a brutal business, and have to be straight up with patients, but this seemed inappropriate. Perhaps not. He is an adult, and he asked .   I suggested to his wife that it meant nothing to him as a specific, unique individual.   My oncologist told me back in the day that I had a "60% chance of being cancer free in five years" when my treatment began, despite it being an indolent form, and Stage III, so honesty is the name of the game, of necessity.

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Star_face
Posts: 3
Joined: Jun 2014

aw God! that was a scary read!

I pray he makes a full recovery soon.

Thanks for sharing. 

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

"J" went to the oncologist yesterday, and she told him and his wife that his blood counts are "very good" (no neulasta this session), and that he has lost 21 pounds in one week

Undoubtedly most of that was fluids, because his swelling has gone down increrdibly.  His wife told me "He can turn his head now !"

They are making progress...

max

jimwins's picture
jimwins
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That is good news.  Thanks, Max. 

illead's picture
illead
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I am so glad for him and you don't need any more worries on your plate Max.

Becky

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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You are correct, Becky. I cannot readily recall a point in my adult life when I would say I "had too few things to worry about." I am glad to be a source of info for them, nonetheless.  His wife asks me something pretty much every day.  She is constantly on the cell phone in her back yard, talking to friends and relatives about "test results."  Her dog comes over and rubs my dog's nose through the fence all the while.

Are you guys back from Mexico yet ?

 

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illead's picture
illead
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cause you're a pussy cat ....like your picture Laughing.  We are in Cabo until the 25th.  It's such a paradise life Undecided.  We have spent tons of time at the dentist, they are the best tho.  We go to a business of 2.  One is an orthodontist and the other is a periodontist but they do whatever.  They really take care of your teeth and gums.  Bill had lost a cap so they are working on that and they want to save one of my teeth so for the 2nd time I have braces on the top for 3 weeks. What a perk for being 65!  Had a big leak at our kitchen sink and because of turning the water on and off to fix it, another leak at the main turn off which involved breaking open the wall to fix.  Plus the truck overheated and tons of other things.  So we got here on the 2nd and today was the frst day with nothing to do and of course the hottest day, so we spent it at the pool and finally relaxed.  We have the condo up for sale, which we hate to do but we are trying to simplify.  Since there is not much going on at the site, you guys might want to see where we live when in Cabo.  Just go to goseead.com, it's a website we own, so we just posted pictures for our friends.

Becky .................BTW, can't help myself........Go Spurs!

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

Becky,

I wore braces as a kid for 3.5 years. Initially I had 4 teeth pulled, but after about 2 years the doc decided that was not enough, and pulled 4 more (my 2nd molars). My teeth were too big for my mouth (odd, given that my mouth has always been too big for my brain).  So, after 8 teeth pullled, I have no gaps, remarkably. Adult braces are quite common now. Our vet's wife wears them, and I guess her to be about 65 or older.

Trivia: Up until the 1950s, most US submariners had to have their wisdom teeth removed, regardless of their health.  An attempt to prevent a problem underway.

Sorry about California Chrome....

max

 

 

 

 

illead's picture
illead
Posts: 852
Joined: Aug 2012

Yes, that horse race was so sad.  I think California Chrome had a lot of fans.  Guess we all wanted to have something to smile about.  Bill and I are still saying "we sure wish he would have won."  We are getting the outer bands of a hurricane that missed us, so we are suffering your high humidity here in Cabo San Lucas.  Boy is it ever hot and muggy and the pool water is bathtub temp.  It's getting time to break out the jigsaw puzzle Cool.

B&B

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3362
Joined: May 2012

Becky,

California Chrome was the "Tiger Woods" of the Triple Crown this year. By that I mean, he was peoples' "reason to watch."  The PGA knows that a tournement with Woods will have a lot of viewership, but without him, very little viewership (it can swing as much as 35% or more). 

That is true of me:  If Woods is on a winning streak and in a tourney, I will tune in, without him, absolutely not.  In golf, there is "Tiger, and there is everybody else."  Non-golf fans know Tiger Woods, but no one else.  "Who won so-and-so?"  The answer will be, "Somebody other than Tiger."  Jack Nicholson approached his stature decades earlier, but Tiger has eclipsed the Golden Bear in most sports wiriters' opinions.  C.C. was huge because he was a budget horse who came out of nowhere and had a big chance to make history.  Everyone was pulling for him.  He will have a wonderful horse retirement regardless.

I was in Charleston when Hurrican Hugo blew through, a Category IV, which was still causing damage in Ohio whenit got there. The next mornng was cloudless and extremely hot.  We got electricity back 11 days later.  A cousin in a more remote county got power back 22 days later. It was about as horrible as it can get. National Guard guarding the streets; helicopters flying over the Intracoastal Waterway, to keep people from retrurning to homes on the sea islands.

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Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3362
Joined: May 2012

I spoke with my neighbor this afternoon, who had a CT last week, following his third infusion.

His oncologist says he is doing extremely well, and that all tumors are responding very well. There is a strong likeihood he will go into total remission, despite the terrible shape he was in just a few months ago.

A bit of good news, amid the sad news that has been coming in to the site the last few days....

max

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