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Supporting daughter with Hodgkins

SupportingAFighter
Posts: 4
Joined: Jan 2017

Hi!  My name is Claire.  I've just joined this forum after reading a few of the posts.  This seems like a very caring, supportive group.

My daughter's journey:  The first time that she was really ill was last January.  Between then and the end of March, she had seen three pediatricians and one dermatologist.  She had symptoms that didn't seem to fit together:  enlarged lymph nodes at the base of her neck, intermittent nausea (with a month between bouts) and really itchy skin.  One night, she was exceedingly ill, so we took her to the ER where they found a large mediastinal mass.  She was 18 at the time of the diagnosis.

Her treatment plan was to begin with one regimen of chemo for two months, followed by another regimen for four months and then four weeks of chemo.  Scans after the first two months looked exactly as her oncologist expected.  Midway through the second regimen, some of her symptoms started to return.  We reported it to the oncologist in July, who didn't seem too concerned.  A fever in August meant another trip the ER and a second mass (larger than the first) was found.

A new treatment plan was devised:  chemo to shrink the mass, high-dose chemo with stem cell transplant, radiation, and another year of chemo.  She's had scans every six weeks through the first phase.  We were preparing for the second phase when a unexpected section in her lung lit up on the PET scan shortly before Christmas.  Since that finding, her skin has begun to itch and other symptoms are returning.

Why I'm here:  Frankly, I'm scared.  I'm scared for her.  I'm scared for me.  My daughter's biopsy is scheduled for today.  She and I believe we already know the diagnosis.  

As each treatment fails, I wonder how on earth we're going to cure her.  The doctors had such a positive outlook for curing her back in March.  They knew how to cure this!  I noticed a distinct difference in their demeanor in August.  They said, "This is a different disease now."

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3469
Joined: May 2012

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

SupportingAFighter
Posts: 4
Joined: Jan 2017

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

janaes
Posts: 800
Joined: May 2016

Hi, Welcome.  I dont post here alot but I red your story and it reminded me of my story.  I was diagnosed with hodgkins lymphoma stage 4 when I was 20.  A little older than your daughter.  It was a scary time.  First of all it was just a shock to be that young with cancer.  I thought it was an "old " people deasese.  Well for me i mad it through treatment and was able to get back to life again.  I want you to know i will be thinking of you and your daughter.

Lots of hugs

janae

SupportingAFighter
Posts: 4
Joined: Jan 2017

Thanks for writing, Janae.  Like you, I was shocked to learn that she had cancer at such a young age.  And then there's the "I know it happens to others, but it doesn't happen to my family."  I can't help feeling a little resentful towards her friends who have had the opportunity to move on with their lives.  Here I am, watching my kid who really can't commit to a job, or to college, because of appointments and feeling too ill to move some days.

I'm glad you're well.  Take care.

Claire

janaes
Posts: 800
Joined: May 2016

I ended up quiting my job and college because I couldnt do it all. Treatments really made me sick.   Cancer really changed my life. I had to let go of alot. After treatment life slowly got back to normal.  I dont know how your daughter will feel but for me after every thing was said and done, I really learned alot and became stonger in my faith and believed if I can do cancer treatments I can do other hard things.  It really did make me stronger. I often told people that my parents had it harder than i did.  Stick with her. You guys will get through this.

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

 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 

 

SupportingAFighter
Posts: 4
Joined: Jan 2017

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.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3469
Joined: May 2012

Claire,

It is good that you are getting the second biopsy, because the list of strains you provided are mutually exclusive; differing diseases.  I had NLPHL, one of those you listed, but it is completely unlike any strain of "Classical Hodgkin's [CHL]," which another doctor mentioned.  NLPHL is defined by the fact that it is NOT CHL.

A correct diagnosis is the foundation of successful cure.  Drugs that are successful for one diasease are ineffective for others. How competent are the people you are dealing with ?  I would ask them this to their faces; print and show them this letter, if you wish.  It is possible that the main problems lies in the pathology lab. How well regarded is it ? Sending the specimin to a renowned pathologist may be money well spent here.

max

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

My kids are adults but I know it would make me crazy if any of them got cancer. So when I was diagnosed 2 years ago with follicular non-hidgkins lymphoma I thought "better me than one of my kids or grand kids". As others have said, lyphoma is a treatable cancer. There are many drugs and treatments out there. My oncologist sent me to an oncologist at Rush in Chgo for a second opinion on the treatment. When the R-Chop didn't get all of the cancer I went to rush for the second Dr's team to administer the RICE treatment. I am now in remission for a year. My second opinion Dr is part of a group of oncologist/hematologist frm various university hospitals who have banded together to share ideas, experiences, etc. (The group is the Leukemia Research Foundation that specializes in all blood cancers.) If you don't have confidence in your first Dr. defintely find a second opinion. Naturally I am now partial to oncologist associated with university or teaching hospitals. I think it is reasonble to ask a Dr how many cases they have dealt with like your daughter's.  Best wished for your family. 

po18guy
Posts: 1069
Joined: Nov 2011

I would immediately suspect the pathology on the biopsy sample, as the disease is not responding as expected. It might not be Hodgkins' at all. Lymphoma can be extremelyy difficult to identify, and I know of recent cases in which Hodgkin's was diagnsoed when it was actually a rare T-Cell Lymphoma (ALCL). Find an NCI designated center here: https://www.cancer.gov/research/nci-role/cancer-centers/find

It is worth traveling to one.

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