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DLBCL Six month scans

BrianK232
Posts: 13
Joined: Aug 2015

After a long and crazy fight, I had been told in April that I was in remission.   I had another scan in July that showed no growth as well.   Then come August, my insurance at work changes and my doctor is nwo considered out of network.   So I appeal, get denied and schedule an appointment with another Doctor that he recommended.   I had a check up last week and my 6 month scan this morning and I can't stop thinking about the results.   In July, I didnt think twice about it, but leading up to my appointment my stomach had been feeling weird.  Not a lot of pain, but just different pressures or sensations all over the stomach area.   The only time I really feel pain is sometimes when I am eating, write after taking a bite, almost right near the top of my stomach.   

On top of that, since my check up last week, I think I feel swelling in my neck, armpits and possibly groin.   I don't remember feeling anything like this before the appointment.   Not sure if it was there and I wasn't aware of it, or I am so paranoid now that I think I feel something, or any number of possibilities in between.

Ultimately the scan results will tell me if I have anything to worry about.   I just know that options are limited for relapse/refractory DLCBC especially since the DHAP gave me some kidney damage and my creatnine levels still are above the range for a transplant.   

Is it normal to get this worked up for a check up?  Are other possible explanations for what I am feeling?  I haven't had fevers or night sweats reappear.   My energy level is fine and no other symptoms.   I just hate the waiting.   

Anonymous user (not verified)

The anxiety you are experiencing is quite common. You must learn to control it. Try to stay busy and occupy your mind with other things. I realize its easier said than done. But what choice do we have? Wish I could help but don't think thats possible. Its a lonely battle but one you can win.  Hang tough and let us know how you are doing. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3522
Joined: May 2012

Brian,

I agree with all that GKH related. You do not say how long ago you were initially diagnosed and then in full remission, but in general the checks the first few years into remission are the most frightful ones.  I suspect you have not been at this game too long, since you had CTs in April and then June -- very close together.  This suggests that you did not end chemo before sometime this year.  Soon the CTs will be scheduled farther apart, and then just annually, and then no scans at all (unless their is indication of problems). After three years, I received no further annual CTs.

Very generally, a person with an aggressive lymphoma that is not going to go into long-term remission never achieves remission to begin with. In other words, achieving full remission was itself a good sign.  You describe symptoms all over your body.  No form of lymphoma could have returned and spread that dramatically in just a few months, or even a year, or probably even two.  It might surprise you to learn also that whereas aggressive NHLs like diffuse B-cell are tougher to treat initially, when (if) they do go to full remission, they are less likely to relapse than indolent lymphomas. No guarantees, but a statistical fact.

In August I got my six-year labs for indolent HL, and the wait didn't really bother me at all.  I get a post-prostectomy prostate cancer PSA lab in January, and going in for the tests and results (which are available instantly for PSA)  BORE ME.  When I got my prostate cancer biopsy back positive, five years after having had HL, I YAWNED in the doctor's face as she spoke to me.  Not intentionally, but it was an early appointment, and I pretty well knew what was coming.  I said, "Yea, ok, send me an appointment with a surgeon when you can," and walked out with my wife. A month later, the gland was cut out, and all has been well the two years since.

This crap gets banal, insignificant after enough years.  You will live to fight another day.  Your worries are typcial, almost universal.

I wish you the best, and expect the results will be wholly negative. I am not a "trendy" sort of person at all, but relaxation techniques, like Yoga or other meditation, are money well spent.  I use beer therapy, but do not "recommend" it to anyone else.  Learn to yawn....

max

BrianK232
Posts: 13
Joined: Aug 2015

Thank you guys!   Very helpfull words.   I Should give more background info.   

My last chemo was in December of 2015.   I had a scan shortly after that showed no change.   The disease had been relatively stable since about June, it had shrunk initially and then stopped shrinking.   As their had been no change in 6 months the doctor decided a biopsy was in order.   It came back negative, but as the sample was ttaken from a surrounding area and not the main area, they did it again.   Same results.   To be sure they decided to open me up and get as much of the tumor as they could.   It was tested, retested, looked at for any mutations, and in April I was told I was in remission.   

It does appear that there were still a couple Lymph nodes lighting up on the scan, but again everything came back negative for cancer.   My July scan was unchanged and was told to have another before the end of the year.   I guess that's part of my issue my situation seemed to be so wierd that I question if I truly was in full remission.   Since the growth stopped in teh middle of my R- Chop treatments, was that what was effective?  Because my scans were not showing more shrinkage I ended up going through 3 other kinds of chemo before we got to the point of the additional biopsies.   

I guess because of that situation that raises questions for me.  And I do tend to worry about the what if.  Sicne I went through the most common treatments, is there anything else they can fight it with.  Plus DHAP injured my kidneys and my Creatnine level is just under 1.70 which I know is higher than they usually would approve for a stem cell transplant.  

But again you are correct.   The fact of the matter is that there was no growth for about a year.   No change at all.   I was told I was in remission and I should focus on that.  No point in worrying about what I can't control.  I have always been more expect the worst hope for the best.   I need to change my perspective to expecting the best and adjusting from there when necessary.   Thank you both.  I will keep you posted.  

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3522
Joined: May 2012

You are correct Brian, that your history is more complex than most.   Anxiety is normal, a part of everyone's life, even people who have no known diseases.

While the stability you mention is great, there have been numerous writers here who have had first-line chemo stall, and remain neutral for a long time, even years.  I have no experience with that scenario myself, and hope others will write.  Your path has been more similiar to what happens sometimes in indolent disease, but no cancer really follows a road map.   Technically, if the remaining enlaged nodes ARE lymphatic, you are in PR (partial remission), which can stay the same a little while, a long time, or forever. If they are benign nodes, then it is CR ("Complete remission," or NED "No evidence of disease").

An exact diagnosis is critical for correct treatment.  My next-door neighbor had enlarged nodes all over for three years but his biopsies always came back negative. He got so swollen he could not lie down to sleep, and finally was diagnosed with large-B.  R-CHOP put him straight into full remission. But what was interesting were the negative biopsies beforehand.

You asked about second-line treatments if necessary. There are a lot of new drugs online now that are tailored to specific strains, and many people go in to long-term "maintenance" programs on drugs like Rituxan or others that work well for many years.  When I was at infusion in 2009, a young guy (maybe 30)  walked in and basically jumped in the chair and got hooked up by the RN. He was reading, seeming to pay no attention to anything going on around him.   I commented that he seemed very relaxed to be in an infusion center, and he responded, "I've been getting this for ten years."  His disease was lymphoma, but I do not know the type, or the drug, but he had all of his hair, which suggests Rituxan or some other monoclonal antibody agent.

No two cases are the same. Just stay on it and demand answers.

max

BrianK232
Posts: 13
Joined: Aug 2015

The three biopsy's all tested negative. So I guess I am assuming that means complete remission, but I could be wrong.   I keep realizing there are always more questions to be asking.   I got my most recent scan in yesterday for comparison so should be eharing back soon.  

Thanks again!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3522
Joined: May 2012

Any news from the scan, Brian ?

All negative biopsies is all good news, at least for the time being. But as humans we do long for answers.  My wife's sister developed breathing problems several years ago, and intitially it wsas believed she had severe lymphoma: Huge nodes all over her chest cavity, and in particular inside her lungs. She tested negative for cancer numerous times, saw several specialists.

Diagnosis eventually was Scarcoidosis, a benign enlargement of nodes, primaily inside the lungs, but they also occur in the chest cavity outside the lungs. Hers are all over. Essentially untreatable, but reductions can occur with steroids. Not usually fatal, but it does kill about 5% of its victims.  In a real sense, lymphoma would have been a better, more treatable, result.

I am NOT suggesting you have scarcoidosis (it is profoundly rare). My point is that not knowing is more agonizing than knowing. People are not sick for no reason.  Like my neighbor who biopsied negative for years, and had to sleep upright in a recliner for months from the swelling from his undiagnosed NHL, knowing is always better than not knowing. Not pleasant, but better.

max

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