Supporting daughter with Hodgkins

Max Former Hodgkins Stage 3 said:

Welcome

Welcome, Support. Anyone would be scared in your current situation, caring for a child (19 y/o).

For tailored responses from the folks here, you need to share what exact type of lymphoma she has: This will be on her biopsy report, and easily available from the doctor. What I am saying is she already has been diagnosed with some form of cancer, or chemo could not be administered, although now she is undergoing another biopsy.   

Always keep a PAPER COPY opf any test results, even if your clinic provides e-mail access.  Get paper copies each time a test result returns, and create a treatment history.  Also specify the specific chemo drugs used thus far, or planned.  There would have had to of been an exact diagnosis before her first chemo was begun.  This does not violate any form of confidantiality, but all agree that members should never give out names, street addresses, ect: ever.  This is a public forum readable online by non-members (although non-members cannot post).

From what information is known so far, it sounds like she has an aggressive disease with metastasis.  But know that most lymphomas, even metastatic into a secondary organ (like the lung) are ordinarily beatable.  Lymphoma is treatable in ways that most organ cancers almost never are.  Know that "lymphoma in a lung" is NOT "lung cancer":  It is lymphoma in a lung.  Am much more treatable situation !  Cancer is always typed by what it began as:  Lymphoma on the liver is not liver cancer -- it is lymphoma on the liver, and so forth.

It usually takes a week or so to get back biopsies, so anticipate a little wait, but a week with lymphoma is irrelevant, and won't worsen anything enough to make a clinical difference.

Itching is a common symptom of lymphoma and leukemia, which are related, WBC diseases. But thus far it soulnds more like lymphoma, given the absence of bone involvement on her PET.

No one here is a doctor or medical expert. We learned stuff "the hard way."

We will be awaiting your information. Bless you, and bless her,

max

Thanks for your reply, Max.  I didn't provide the drugs because, unbelievably, I could no longer remember the original regimens.  I have reams of paper from the hospital and our filing system is ...ahem... disorganized.  And, of course, we had to leave yesterday for the biopsy.

After pawing through the paper I think I've found enough to address your questions.

Diagnosis:  I don't have a clear-cut answer to this one.  My paperwork doesn't show the same info on every page.  I've seen alternately "Hodgkin's disease", "Nodular sclerosis Hodgkin lymphoma", "lymphoma, unspecified body region" -- I even found one page with all of three of them listed -- "Hodgkin lymphoma" and "nodular lymphocyte predominant Hodgkin lymphoma".  It seems as if the diagnosis changes based on whom we saw that day.  Her primary oncologist called it "classical Hodgkin's".

Chemo:

First two cycles:  Vincristine, Doxorubicin, Prednisone and Etopicide

Followed by 2.5 cycles of Vincristine, Cytoxan and Dacarbazine.  The second mass grew during this regimen.

Currently: Brentuximab and Gemcitabine

OO7 said:

Second opinions? Specialists?

 First of all I want to say how sorry I am, how could you not be terrified and it's likely you'll be scared until she beats this.   Without knowing any of the particulars, have you had any second opinions or is she being being treated by a specialist in her particular disease?  If not it wouldn't be a bad idea to get some new eyes on this...

I do know that pediatric cancer is very different animal, in that I mean; as ugly as it is it can also be very treatable.   My best friend is a pediatric oncologist hematologist specializing in brain tumors.  I hear of unimaginable stories  and thankfully of how they survived.   It's not an easy road, it's going to be very difficult journey but I hope and pray that she continues to be a fighter.  May the team of doctors find the recipe to kill the beast.  As hard as it is to type this, try to breathe and take care of yourself so you can better take care of her.

I will pray for both of you and don't hesitate to reach out, we've all had bottom of the barrel days.  Perhaps we can be a sounding board, offer a bit of advise, send a prayer and be a punching bag of sorts.  I hope to offer strength and a sliver of hope and may you both never give up.

Hang in there

 Thank 

 

007 -- Thanks for writing.  You're right.  I won't feel settled until we've beaten this conclusively.

I know that her primary oncologist reached out to our hospital's associated adult hospital as well as a national expert before choosing the current regimen (Brentuximab and Gemcitabine).  There's a team of doctors who met at our hospital to talk through their recommendation.  In all, a lot of doctors have been consulted.

My daughter has lost faith in her oncologist.  I get that.  We've agreed that it's time to get a second opinion, though I'm not really sure how this is done.  I was laid off last Friday, so you'd think I'd have all the time in the world, but I need to update my resume and start applying for jobs.  We'll figure this out, somehow.

I appreciate your thoughts and prayers.  It's always good to be supported by others.