Treatments for DLBCL - UPDATE

Hospital Stay

Yes, my husband has Stage 4 DLBCL because it was in his bone marrow.  His oncologist kept him in the hospital for his first 5 days of treatment of R-EPOCH.  He did that to keep a close eye on him because the disease was so bulky that he had a higher chance of having Tumor Lysis Syndrome. 

Just one Round in Hospital

No, just the first round.  The other 7 he carried his bag around the house for 24 hours.  The R-CHOP and R-EPOCH is the same accept one more drug is added to the R-EPOCH, which is E Etoposide Phosphate.  My husband had a bulky disease and we are  still fighting it.

Yeh, I am glad we did do the

Yeh, I am glad we did do the first one in the hospital, but after that he did just fine with the rest as an outpatient.  My husband is 54 and was very healthy, worked out everyday, and nothing else was wrong with him until this nightmare. 

common

lovemy,

Hospital administration of R-EPOCH is common, but not universal. My neighbor had the same disease as your friend 8 years ago, and did all infusions as an impatient. It was four-day stays, as you described.   It was harsh for him I will say.  But, his biopsy tumor was softball sized.   He could not lower his arm, as it was in the armpit ("axillary region," very common).  

He was (is) a big guy, about 6'1", and around 350 pounds at the beginning.  He weighed under 200 at the end of therapy -- a weight loss of over 150 pounds.  Throughout most of his infusion time he was unable to walk, and had to be carried to the car for his return trips to the hospital for infusion.

Sometimes it is much better to be an inpatient.

Not all EPOCH experiences are like this of couse, some patients have a milder time of it.  But impatient is, as I noted, very common for its administration. 

While Stage IV is not a lot harder to cure than earlier stages, it can be ominous for other reasons.  He was relatiovely young at the time (about 35), and went to full remission, and has been cancer-free since. But about 2 or 3 years after chemo ended, he had to have both hips replaced; the doctors told him that one of the drugs at times starves the bone of proper blood supply, in essence killing the bone itself.

Many people have little imparement from chemo, of whatever sort, such as DTDG described.   But for others it is hell.  EPOCH trends more toward the latter.

Be aware that there is a form of "Dose Adjusted" (DA) EPOCH that requires more blood testing, but is becomng more popular. It basically allows raising or lowering of dosage, based upon the patient's ability to tolerate it.  All chemos are adjustable, but this is a formal protocol that allows more rapid changes than most doctors would otherwise likely engage in.  You might want to ask about DA.

It is written as DA-EPOCH-R

Me, I would request hospitalization.

Bless the both of you,

max

http://chemocare.com/chemotherapy/acronyms/epoch.aspx

https://chemoexperts.com/da-epoch-r.html

DLBCL

Lovemyboy94, Welcome to the site. Please know that lymphoma is very treatable and sometimes even curable. 

I am glad your friend has someone who obviously cares so much for her. Are you to be her caregiver? Are you going to her medical appointments with her? Will you be helping with the children as she goes through treatment? 

I went to a local hematologist/oncologist for my diagnosis, testing, and treatment. I still do almost 5 years later. He took my case before our state tumor board and he also referred me for consultation at Duke University. Local does not mean incompetent and your friend's DLBCL is the most common type of Non-Hodgkin Lymphoma. 

Once her testing is complete, she has decided on a physician and treatment protocol, I hope you will support her decisions 100%. It will be very important for her to trust her doctor. Be strong for her. Be positive for her. Pray for her. Be a beacon of hope for her. 

Best to you both. . .

Hugs, 

Rocquie

 

2nd opinion AND clinical trials

 

Hope you friend is on her way for 2nd opinion. I am treated at MSK, but Cornell is another great option.

 

The treatment will be decided only AFTER all scans and biopsies are completed, since there are so many types and subtypes Lymphoma. I was initially diagnosed with DLBCL (stage 4), but turned out it was even more complex. I was entered into a clinical trial at MSK, which used R-CHOP, + a new drug that’s currently looking very promising- VENETOCLAX (also called ABT-199).  I was in remission after 3 months, did not need to have a bone marrow transplant. I am now waiting for my post treatment scans this month. there's no way to know what's next.

I only had to stay in hospital for the first 2 days,only to monitor my reaction to the new trial drugs, otherwise it's an outpatient 3 weeks cycles.  Make sure your friend asks about clinical trial options too, those are using the newest most cutting edge options out there.

ps- my best friend is also in FL. We facetimed and spoke on the phone almost every day, and she came and stayed with me after my first cycle. Keep being a good friend as you are. Be frank with her, and let her express her fears, this is quite a roller coaster for every one involved..

 

 

 

lovemyboy94 said:

UPDATE -

Thanks to everyone who gave me their comments and feedback - its much appreciated!

The visit w/ the specialist at Cornell went well.  They'll be reviewing the samples with their pathologist to have a definitive diagnosis.  With that being said, the specialist is leaning more towards Primary Medistinal B-Cell Lymphoma, a subtype of DLBCL.  Given where the tumor was located, the spread of the cancer, and her age (33) and symtoms, the specialist is confident this is the type we're dealing with.  He also recommended an MRI and other treatments if this round of therapy doesnt work. He started on her prednisione, and for now, the specialist will be overseeing her treatment with the local oncologist.  Her 1st round of chemo will be R-EPOCH in the hospital.  They are confident that her next rounds of chemo will not require a hospital stay though.  My concern is that this treatment may not go according to plan, that it will be like pulling teeth making her travel to NYC to be treated at the cancer center.  She did have her appt with the chemo nurse(?) this past Monday, and it was refreshing to hear that both doctors were in communcation already considering this was on Monday and her appt with the specialist was on Friday...She received her port today - and the chemo begins on Monday... 

The specialist also mentioned a spinal tap (lumbar puncture). Anyone familar with that?  Anyone have some suggestions on how to keep her the most comfortable during this first round? 

Spinal taps

My husband had a spinal tap to test for DLBCL in the central nervous system.  Luckily, none was present.  He received four rounds of methotrexate administered through the spine, similar to a spinal tap.  It was administered by the oncologist as a precaution to keep his DLBCL from spreading to his central nervous system.  He went through the procedures well, but suffered from severe headaches afterwards.  A small percent of people with spinal taps get severe headaches and unfortunately he is one of them.  To minimize the headaches he had to lie flat for several hours after each treatment. His doctor also prescribed a pain killer because as soon as he sat up the pain started and lasted for days.  Most people do not get a headache, but you might want to mention that it is a possibility and advise her to lie flat for as long as possible after the tap.  Best wishes to you both.              Simone