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Transformed NHL from Follicular to Diffused Large Cell B

DPitner
Posts: 4
Joined: Apr 2021

My mother has had NHL for 7 years.  She would have treatment and then it would come back.  In January, she stopped treatment since she was feeling better and was reacting to what they were giving her (rash all over).  Doctor said if she was feeling ok, they could just watch and wait.  In February, she started having hip pain.  She thought she might have arthritis and just tried to stay off of it and wait to see if it got better.  It didn't, so she went to her primary care doctor and they did an X-Ray.  It showed a spot and then they scheduled a CT Scan.  They found cancer in the bone.  She went to her oncologist and ordered another CT with dye and confirmed that it was cancer.   They decided to schedule a biopsy and afterwards confirmed that it has transformed to Diffused Large Cell B (wording?).  

The 2nd CT Scan, also showed that there was now a spot on her L3 Vertebrae and a few other new places.  Everything I am reading about her age and symptoms and it being transformed is showing a poor prognosis.  Does anyone know someone who this has happened to and how long they lived?  Her doctor is now talking about R-Chop and then doing CAR T Therapy.  It sounds like this treatment has risks and could be hard on her.  

Thank you,

 

Diane

 

 

 

PBL
Posts: 329
Joined: Jul 2016

Hi Diane,

Sorry for your concern. When you read things on the internet about transformation from indolent forms (I assume your mother had follicular lymphoma, which is the most common among those) to Diffuse Large B-Cell Lymphoma, it sounds really hopeless. Transformation unfortunately happens at an estimated 3% yearly rate, and as it is serious business, it needs to be treated aggressively, but the good news is, R-CHOP and ASCT - and possibly CAR-T cell treatment as well - will very likely do that job and possibly even give your mother a long respite from her indolent strain as well.

I was diagnosed five years ago with Primary Follicular Bone Lymphoma, with a spontaneous pelvic fracture, multiple bone lesions throughout my left pelvis, and rather high SUVs for "just" Follicular, so - although the biopsies did not catch any "aggressive" cells - it was suspicious for transformed lymphoma and I received six R-CHOP infusions followed by a two-year Rituximab maintenance treatment.  I still do have some avidity of my initial lesions on PET, but to the best of my (and my hematologist's) knowledge, the remission continues.

I hope others who have actually been diagnosed with transformation will let you know how they have fared since then.

In the meantime, try not to give too much credit to what Google brings you, and ask your mother's medical team to answer any questions you may have.

PBL

ShadyGuy
Posts: 709
Joined: Jan 2017

had her follicular transform to aggressive DLBCL before either was even diagnosed. It turned out well for her. Hopefully your mother will get similar encouraging results.

DPitner
Posts: 4
Joined: Apr 2021

Do any of you have the genetic info on it.  That is really what is concerning me.  When I looked up her prognosis based on what she is positive and negative for and the percentages, it wasn't good.  We will be talking to oncologist tomorrow so I'll see what he says.

Rocquie's picture
Rocquie
Posts: 857
Joined: Mar 2013

I believe I am the person ShadyGuy mentioned above. I was diagnosed with follicular lymphoma transformed into DLBCL and was treated 8 times with R-CHOP followed with 2 years of Rituxan. I have been in remission for 8 years.  I never sought out, was told, nor asked my doctor about prognosis. I do know I was categorized as high risk. I had genetic testing done at Duke University.  I wonder what genetic information you are seeking.

Best, Rocquie

DPitner
Posts: 4
Joined: Apr 2021

Do any of you have the genetic info on it.  That is really what is concerning me.  When I looked up her prognosis based on what she is positive and negative for and the percentages, it wasn't good.  We will be talking to oncologist tomorrow so I'll see what he says.

DPitner
Posts: 4
Joined: Apr 2021

My mother is currently in the hospital.  She has been in extreme pain and they now have her on hydromorphone.  She has a fracture in her hip due to cancer there and now there are more vertebrae involvement.  She had her 1st round of R-CHOP last Thursday, but we aren't seeing any benefits so far.  I know it is early.  Tomorrow they are going to do radiation to her spine.  I'm worried this might be the beginning of the end.  The oncologist isn't sure now whether she will be able to do the CAR-T Therapy like originally scheduled.  Has anyone known someone who has had spine and bone and ureter and kidney involvement that was able to turn that around with chemo or CAR-T Therapy?  I want to stay hopeful, but at the same time by brother who lives in a different state is looking for guidance on whether he should come out to visit now before things get too bad.  Thoughts?

Max Former Hodg...
Posts: 3699
Joined: May 2012

Diane,

A few thoughts regarding your posts.   

1.  As you note, one infusion of any chemo combination is not going to show results immediately, if ever  (there are extremely rare exceptions to this, such as ICE given for pre-SCT, or 'hot' chemo, applied to peritoneal cancers, but these are not relevant to your mother's situation);

2. Radiation to the spine is tricky, but hopefully WILL bring immediate, or at least very rapid, pain relief.  RT of metastatic lymphoma is a pallative treatment, being given to her as an adjuvant.

3. If her lymphoma is metastatic not only to the bone, but throughout the urinary trac also (as your last post indicates), the prognosis is poorer;

4. Yes, I would suggest to any siblings or others who wish to see her to make travel arrangements.

 

No one here is a doctor, least of all me....just my read of the few posts you have submitted.  I can recall cases this bad turning around and the patient regaining health, so do retain hope, while being realistic.   Good luck to all of you,

PBL
Posts: 329
Joined: Jul 2016

Hi Diane,

As Max pointed out, and as you are well aware of yourself, although chemotherapy can rapidly bring spectacular improvements, it is still too early to see those only a few days after your mother's first infusion. Hopefully, though, she will start to feel better in a few weeks. She does, however, need help in maintaining her spirits - if not her physical shape - and that is where family and friends can make a difference: in showing her that they care. Visiting should not, I believe, only be resorted to in extremis. If - and that is perfectly understandable - travelling is not convenient due to distance, cost, or work considerations (or with regard to the risks attached to CoViD-19 transmission), I am sure your brother and other family members and friends can make their caring, affectionate presence known to your mother through phone/zoom calls, emails/cards, thoughtful gifts, etc.

Keeping you and your mother in my thoughts, hoping she takes a turn for the better soon.

PBL

ShadyGuy
Posts: 709
Joined: Jan 2017

Dpitner - How is your mother? I am hoping for good news.

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