Just diagnosed with Double/triple hit Lympoma

bobmat

Hello all,

      Just had a visit (zoom) with an oncologist for the first time.  There is more data to be gathered but it looks like I have triple hit Lymphoma.  The first diagnosis is based on an FNA and the oncologist wants to have his people look at it - but he doesn't expect the diagnosis to change.  I had a Pet Scan yesterday but it did not get to the office in time - should no more about staging once he has seen it.  I'm here because I need to discuss it - but don't want to upset my wife anymore and not ready to tell the rest of my family too much.

 

 

     A little more about myself be 62 next week.  I feel fine, no change in eating habits, mobility, strength, balance, sleeping (except for some anxiety).  If it wasn't for the swollen lymph node - I would say I was symptom-free. 

 

    I'd appreciate any information about your experience with the disease and also any information on how you told friends and family about it.  I really don't look forward to spreading the news but also don't want to have to deal by myself.

 

   Thank you - Bob 

ShadyGuy

If the node ...

is accesible you may want to have an excisional biopsy as FNA are notoriously unreliable. Good luck.

po18guy

Sorry to hear about this

Yes, you need a second opinion - on an entire lymph node. Lymphoma can be extremely difficult to properly diagnose. The pathologist needs to see the internal structure of the node to determine if it is some form of infection, a benign lymphoprolifierative condition, or actual lymphoma. A second opinion saved my life. If it is actual lymphoma, and is double or triple hit, I urge you to look into a clinical trial, as they offer cutting edge therapy. I have been in four trials so far, and with any sort of rare or unusual malignancy, I think it should seriously be considered.

bobmat

ShadyGuy said:

If the node ...

is accesible you may want to have an excisional biopsy as FNA are notoriously unreliable. Good luck.

Thank you

ShadyGuy - Thank you.  We discussed that the node may be removed and tested.  The oncologist wants to have his people look at the FNA first.  

 

bobmat

po18guy said:

Sorry to hear about this

Yes, you need a second opinion - on an entire lymph node. Lymphoma can be extremely difficult to properly diagnose. The pathologist needs to see the internal structure of the node to determine if it is some form of infection, a benign lymphoprolifierative condition, or actual lymphoma. A second opinion saved my life. If it is actual lymphoma, and is double or triple hit, I urge you to look into a clinical trial, as they offer cutting edge therapy. I have been in four trials so far, and with any sort of rare or unusual malignancy, I think it should seriously be considered.

Thank you Po1guy

The oncologist will have his people look at FNA.  We discussed having the lymph node removed - it's definitely on the table.  There is a lot more to be done to stage the disease - the doctor hasn't even seen the PET Scan yet.   Based on the current information the treatment being suggested is Dose-Adjusted Epoch.  It's more aggressive than RCHOP.  Clinical trials were mentioned but the oncologist didn't think any were appropriate.  I do plan to get a second opinion - my only worry being the time it may take (the holidays and covid slowed my getting this appointment.).

My thanks again - really helps to get support for people who have been there.  Wishing you the best going forward - Bob

po18guy

bobmat said:

Thank you Po1guy

The oncologist will have his people look at FNA.  We discussed having the lymph node removed - it's definitely on the table.  There is a lot more to be done to stage the disease - the doctor hasn't even seen the PET Scan yet.   Based on the current information the treatment being suggested is Dose-Adjusted Epoch.  It's more aggressive than RCHOP.  Clinical trials were mentioned but the oncologist didn't think any were appropriate.  I do plan to get a second opinion - my only worry being the time it may take (the holidays and covid slowed my getting this appointment.).

My thanks again - really helps to get support for people who have been there.  Wishing you the best going forward - Bob

It is helpful to know...

That lymphoma is not generally an emergency. It will be just as amenable to treatment at late stage as it is at early stage. As to treatment, I can witness only as to what I have received. It was CHOEP-14, which is a dose-dense regimen, using the same chemicals as EPOCH. Once that was finished, I received two months of GVD, as much as I could tolerate. Now, I might just be slow on the uptake, but through the CHOEP-14, I worked 10 hour night shifts as an emergency first responder. I was pretty whacked at the end of that regimen, but it was doable. Oh, I've been at stage IV at least twice, so don't let staging freak you out.

One thing that you want to be absolutely certain of is the pathology. Treating you for the wrong condition would most certainly lead to a poorer outcome. If you can have an "outside" pathology lab examine the biopsy sample, it is always best - mistakes are made and I know of 5 cases which turned out very poorly, if you can read between the lines.