DLBCL Six month scans

Scanxiety-II

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

Correct

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 said:

The three biopsy's all tested

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!

Any news from the scan, Brian

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