15 years out and here again

If you are in the US, I would stronly recommend thart you consult with a specialist at a National Cancer Institute designated comprehensive cancer center (if you are not already at one). They employ the best and brightest, possess cutting edge technology, perform research (i.e. clinical trials) and offer you the absolute best chance for a good outcome.

The neasrest center can be found here: https://www.cancer.gov/research/nci-role/cancer-centers/find

But it was Angioimmunoblastic T Cell Lymphoma combined with Peripheral T-Cell Lymphoma - NOS,  a very strange combo. If the mass lights up, well, there may be a non-malignant cause - BUT - best not to search until and unless you have a firm diagnosis. Speculation may only lead you astray and will increase stress exponentially.

WoodlandGnome said:

Yeah yeah yeah

i do have a decent track record of self-diagnosis. Including the HD way back. But I know it’s the right thing to do. Yet, my anxiety won’t let me not dwell, and not google. Hence how I ended up here this morning  

 

Man an I want the biopsy NOW. But it won’t be for another 2 weeks. I have to wait for at least one more week because of the blood thinners from the stroke.

FTR, mid-40s, with a cancer history, 2 strokes, and variety of idiopathic optical nerve issues. I got junk mail for life insurance today. laughable. 

 

Thanks for listening to me

I too am sorry about the likely relapse, Wood.  HL is fairly prone to relapse, even way out at 15 years, such as in your case.

As you likely are aware, a two week wait for a biopsy is insignificant against lymphoma, except emotionally, and the anxiety involved.  I was diagnosed with bulky, very widespread disease, and it was well over two months between the first CT, and my first treatment infusion, despite me trying to expedite everything.  When my onc explained my treatment plan to my wife and me, he then said the first infusion would be an additional two weeks wait.  I asked if the wait was lii-advised, and he said no, and added, "I would put you in the hospital today and start your infusions in the morning, if necessary. But it is not."

max

Its normal and OK to be concerned but not to the point of letting it be disabling. You will find people on here who are totally $nal about every minor detail of their own illnesses and constantly quoting items they find on the web while advising others to “not worry” and don’t surf the web for info. You are just as smart as these non professional medical experts. Its ok to search the web for info as long as you keep it in the proper context and acknowledge that there is a lot of junk on the world wide web. Get your medical advice from medical professionals not from websites like this. This is also the web which the “experts” tell you not to look at And should be viewed in the proper context. Good luck!

First time around I had a similar biopsy situation and stayed in hospital for 8 nights. It was a terrible experience. When I relapsed last year we decided to go ahead without a biopsy and assume it was the same as before. So far it seems to have worked out. Since yours is a new case, not a relapse, it would be risky to not have a biopsy. Best of luck!

In 2013/2014, it was clear that I had relapsed a second time. The problem was that the nodes were in too deep to biopsy. So, we chose to wait until I grew a tumor close enough to the surface for doctor to get all, or a large chunk of it. It seems a strange reaction to growing cancer, but that is the way it plays out sometimes.

WoodlandGnome said:

Biopsy is done

had my biopsy on Thursday. Got to shower today!

full results in a week, but my oncologist said to call him in two days and he would talk to the pathologist to get an early read. As in, pathology has probably already looked at it and has a basic idea, but spends a little longer to get subtypes and such.  

Next up, digging out all my old records so someone can add up all my previous dosing, to see how close I am to lifetime dosing of bleomycin and such. Pretty sure they dumped the bleo after 4 cycles last time. Either that, or I need to go back to my original oncologist, because I’ve moved since all that.

but I am still hoping for no whammies. 

I hope the biopsy results are good for you, Woodland.

It is wise to review the dosing, but "Lifetime Dosing" is, in my experience, advisory only.  I received 140% recommended lifetime, of each drug in R-ABVD.  A regular here has written before receiving 400% lifetime for many powerful chemo drugs.

But, IF there is some form of relapse, usually second-line/salvage treatments involve mostly or exclusively new drugs (new to YOU, not necessarily newly-developed), not attempted previously on that individual patient. Not always, but usually.  And of course if you have Lymphoma again, drug choice varies with strain, which usually determines second-line drug choices.   And know that HL after relapse pretty commonly reoccures as some form of NHL.

max

WoodlandGnome said:

NHL

i think today was the first time it occurred to me it could be a non-hodgkins lymphoma. i Think partially because I’ve never heard of a HL being in one node only. I was letting the one node thing lead me away from a hodgkins, but then reading NHL diagnosis stories, I realized it could be a NHL. 

Well, we will know soon enough.  Your onc should know to not rush to report. Slow and careful regarding pathology is better in dealing with lymphomas, since there are so many (over 60 types recognized by the World Health Organization).  A week or two is nothing in the lymphoma experience -- medically -- although it can be an eternity psychologically.  

I met a guy who runs a deli in my little town a year ago.  Been fighting Multiple Myeloma 18 years now. Yesterday, I called an old friend in New Hampshire.  I knew he had had NHL in 1997, but did not know until yesterday that he had a SCT then.  He mentioned it yesterday because he relapsed a year and a half ago, and had another SCT -- 20 years later.  He said he even had the same oncologist.  He mentioned it as an afterthought, like it was nothing.

People can adapt to, and live with, about anything.  But luckily, most lymphomas are usually beatable or at least managable.