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15 years out and here again

WoodlandGnome's picture
WoodlandGnome
Posts: 19
Joined: Mar 2019

Dx 2004 nodullar sclorosis hodgkins.  6 cycles ABVD and hit remission. Followed for 10 years and 5 years ago stopped seeing oncology. 

 

Fast forward to two weeks ago I had a stroke. Spent 2 nights in the hospital, luckily, no permanent damage. But, in the MRI or CT of the head/neck (looking for clots), they saw the edge of something in my chest. Had a chest CT and they found a 6cmx7cm node. And suddenly, I’m in the neuro IMU and they become much more concerned with me seeing oncology. 

 

I have a PET scheduled for tomorrow AM. We are somewhat hoping the PET find another one to biopsy, because no one wants the biopsy a mediastinal node. But, finding another would also be not so good. I have an appointment with thoracic surgery in another 2 weeks, in case we do need to go for the tough one  

 

On on the plus note, everything seems to be moving slower than last time, so I take that as a bit of “we aren’t as terribly concerned.” Oncologist didnt have much thought, only he wants a biopsy to find out what it is. It is the same node that was lowest to shrink, and still showed enlarged in 2007. But I did get a CT in 2012 with all normal size nodes. 

 

What at I was told was that if it is hodgkins again, it would be considered “new” not a reoccurrenc, and we’d treat with chemo again (but no B, or a new B rather than the old B bc I’ve likelynexceeded my lifetime dose of bleomycin). That calmed me. I feel like chemo, BTDT, and it was 6 month of my life but now, just a blip. 

 

Not it sure what I’m looking for here, but just needed to ”talk.”

po18guy
Posts: 1011
Joined: Nov 2011

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

WoodlandGnome's picture
WoodlandGnome
Posts: 19
Joined: Mar 2019

The best part of where I live is the medical options around here. My PCP is with Hopkins. im seeing neuro and oncology with UMD. So I’ve got that covered.

 

But I did spend some (too much) time on pubmed today and have decided sarcoidosis seems likely. Oncology has mentioned that a couple times, and it fits with some other weird (aka idiopathic) diagnoses I’ve had over the past few years. Like an orbital pseudo tumor. And even a couple cases presenting as stroke.  Unfortunately, it lights up on a PET. 

po18guy
Posts: 1011
Joined: Nov 2011

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's picture
WoodlandGnome
Posts: 19
Joined: Mar 2019

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 :)

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3329
Joined: May 2012

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

po18guy
Posts: 1011
Joined: Nov 2011

Is to deal decisively with the anxiety. You are far from alone, as an estmated 64 million Americans suffer from some form of it. Yet, look at what it has done: you are a manic Googler, and not a pathologist. Only a chunk of that mass will reveal what it is. Heard of Cognitive Behavioral Therapy? Probably, but I mention this, as anxiety in no way helps one through the diagnostic procedure - and is certainly not helpful should an adverse diagnosis arrive. 

And sarcoidosis? It is not a positive diagnosis, but one of exclusion. Basically, if it is nothing else identifiable, they call it sarcoidosis. Many cases resolve by themselves, but it can be as serious as lymphoma. It sounds like something is up with your immune system, but what? 

ShadyGuy
Posts: 429
Joined: Jan 2017

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!

WoodlandGnome's picture
WoodlandGnome
Posts: 19
Joined: Mar 2019

Got my PET this morning, although they called at 9am and moved it to an office an hour away (instead of 15 mins). That did not sit well with fasting, non-caffeinated me. Lol

But on the way home, the surgeon called and moved my consult up a week. So next Monday. So I should have answers within about 2 weeks (assuming surgery scheduled next week after the Monday consult, the a week or pathology). 

At least I don’t have a computer with a CD drive anymore, or you would bet I’d be looking at my images already and trying to guess what the report will see.

ShadyGuy
Posts: 429
Joined: Jan 2017

Glad you are feeling better!

I always get my scans as soon as possible and look at them. I use a MAC Book so I just take a thumb drive to the imaging lab and the nice lady puts it on that for me. You can also get a tiny CD drive powered by USB port for under $50. I then store them in the cloud. Its a bit like looking for faces in the clouds (pun intended). I don’t expect to see the issues but the radiologists report often says what images they see something on. I usually just see dogs, rabbits, sailboats, old girlfriends etc. For a real hoot get a second reading by a radiologist not associated with the original imaging company. I did that twice and they noted different issues but with the same general conclusion. Radiologist seem to have individual styles and describe things differently. NCI advises using the same radiologist for every scan but I have never been able to do that. I think the scans just go online and whichever radiologist in the “pool” gets to it first does the reading. I think many of them work from home.

Good luck and Google away! (you don’t need permission,)

WoodlandGnome's picture
WoodlandGnome
Posts: 19
Joined: Mar 2019

the good-ish news, the PET didn’t find anything else. It’s only “ish” bc it means the only place to biopsy is the medialsteinal node, which is not a simple biopsy. Two choices, down from the neck or in through the side (which involves a deflated lung). I choice down bc deflating a lunch does not sound good, but better scars. 

The annoying part, looking at another 2 weeks to get on the schedule. I was ready for a Monday consult to schedule later this week! 

ShadyGuy
Posts: 429
Joined: Jan 2017

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!

WoodlandGnome's picture
WoodlandGnome
Posts: 19
Joined: Mar 2019

You did the one with the collapsed lung? 

He  the risks of either one are about the same, but the lung one just sound riskier. Not that I want a huge scar across my neck either. 

ShadyGuy
Posts: 429
Joined: Jan 2017

similar in that my nodes were deep inside my chest, one attached to my aorta, others on my kidney and retro peritonium. I went under expecting a short robotic procedure. I signed a release authorizing the surgeon to do more if deemed necessary.  I ended up on the table for 8 hours. Consulting surgeons were called in. The report says I had so much scar tissue that the robotic procedure could not identify a node so they took a closer look by opening me up from breastbone to below my navel. After having my internal organs nicked and nearly dying from blood loss they decided to just biopsy the scar tissue. It was positive for FNHL as was a BMB about a month later

I am certain you will not have such issues. Your team sounds like the best. Also my case was so unusual it was written about in a medical journal. I feel certain you will be fine. Best of luck.

po18guy
Posts: 1011
Joined: Nov 2011

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's picture
WoodlandGnome
Posts: 19
Joined: Mar 2019

surgery scheduled. Another 2 weeks off. I was so mentally prepared for this week or next. Waiting until the end of the month is just more time to worry. blah!

 

WoodlandGnome's picture
WoodlandGnome
Posts: 19
Joined: Mar 2019

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. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3329
Joined: May 2012

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's picture
WoodlandGnome
Posts: 19
Joined: Mar 2019

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. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3329
Joined: May 2012

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.

WoodlandGnome's picture
WoodlandGnome
Posts: 19
Joined: Mar 2019

RS cells found. More path needed plus a comparison to my previous genetics. But looks like I’m in the very late replase club.   Oncologist is consulting with Hopkins to develop a plan. We are holding for a week due to my work schedule. 

despote being pissy as hell that it’s happening, it’s a huge relief to not to be in limbo. 

I just dyed my hair purple. I’ve always wanted to do it, but it never felt professional (I’m in a very conservative office). I had a case of the eff-it’s, it’ll be gone in a month. 

PBL
Posts: 185
Joined: Jul 2016

Sorry it looks like you may belong it that club indeed... If it does prove to be the same strain, then it seems that it is just as treatable the second time around, with complete response rates above 80%, which is still something to be thankful for.

Congratulations on the bold hair statement. I remember the nurse in the O.R. when I got my port put in telling me how on her diagnosis she had tried all sorts of daring haircuts and dyes, with that same idea that it would be gone in a few weeks.

Best of luck to you, and keep that head high.

PBL

WoodlandGnome's picture
WoodlandGnome
Posts: 19
Joined: Mar 2019

The findings are consistent with recurrent classical Hodgkin’s lymphoma. 

It CD30 positive, which means I can get the new B, good, because I don’t need more bleomycin. He is contemplating what else, because I can’t do more adromycin. So AAVD is out.

Do they still do radiation? Cause I never did that before, so maybe it’s in the cards now. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3329
Joined: May 2012

The most common salvage for relapsed cHL is ICE, followed by SCT.   ICE contains neither Bleo or Rubex, but is rather draconian/harsh, especially with the transplant as a follow-on.

Radiation Therapy (RT) against blood cancers is very rare today.  Situations in which it is sometimes used are against single nodes or very limited distribution, or in debulking -- when the volume of turmors is massive.

Another option now mentioned occasionally is "B & R."   Much, much milder than ICE with or without SCT. Used both as a palliative and possibly as curative, but the objective seems most frequently to be palliative, with good success.  (Bendamustine and Rituxan)

WoodlandGnome's picture
WoodlandGnome
Posts: 19
Joined: Mar 2019

My oncologist told me I’m too nice for ICE. 

 

next step is a port, and a consult at Hopkins, who is already trying to recruit me for a clinical trial.

Evarista
Posts: 269
Joined: May 2017

I've been seeing reports on this for relapsed/refractory Hodgkin's.  Has it come up in your discussions? I think it's still "very early days" in the clinical trial stage, but something to keep an eye on down the road.  Good luck going forward.

WoodlandGnome's picture
WoodlandGnome
Posts: 19
Joined: Mar 2019

just to keep this going... I spent an hour with my oncologist, during his lunch,  last week going over treatment options. That was really cool. He is recommended BvB + (likely) RT. Consult with radiation oncology is later this week. Consult with Hopkins is TBD. Port to be installed in 2 weeks, unless a cancellation on the surgeon schedule. 

I was hoping to get into a trial Hopkins is doing, but I think I’ll be disqualified thanks to the stroke I mentioned above. But I’m OK with BvB. Hopping to avoid SCT.

im not seeing the same oncologist as originally. I almost want to call him up. Partially to get his thoughts, and partially because I think he might be interested. But I doubt he’ll remember me - it’s been 12 years since I’ve seen him!

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