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Treatments for DLBCL - UPDATE

lovemyboy94
Posts: 8
Joined: Mar 2017

Hi there -

I'm inquiring about this for a my best friend, who was just recently diagnosed w/ Stage 3 DLBCL.  She is 33 years old and is a mom to 3 young children, so it's imperative she kicks this things @$$!!  Yesterday she had a bone marrow biopsy. I've been doing a ton of research on this and I know that this is all part of the process for those who have diagnosed w/ DLBCL.  Her Pet Scan did she had 2 weeks ago did show that there were signs of cancer in her shoulder bone and stomach (which is in addition to the tumor which has invaded her upper and middle lobe of her right lung).  Needless to say, its been a wild ride for the last month.  I had to literally talk her into getting a second opinion from a lymphoma specialist in NYC (she lives on LI) in addition to the opinion she's getting from a local "general oncologist."  While she'll be seeing the specialist in NYC this week, the oncologist she saw locally was the one who advised her of the stage, but said that if it's in her bone marrow she'd me considered a stage 4.  He also said that for treatment he is recommending that she undergo treatment which would require a hospital stay of 4 days each round, 6 times, every 3 weeks.  I'm not a doctor, but from what I've read the standard treatment rarely reuiqres any hospital stay, let alone 4 days!  Obvioulsy, she is getting a second opinion, but I wanted to know if anyone has heard of anything like this before?  Thanks for your help!   

DTDG
Posts: 12
Joined: Oct 2016

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. 

lovemyboy94
Posts: 8
Joined: Mar 2017

Thanks DTDG.

I was under the impression that the standard course of treatment is R-CHOP, though I could be wrong.  Was your husband in the hospital every three weeks for 5 days?  This oncologist said the he wants her to be admitted for the treatment and stay there for 4 days each round - which is like 24 days total.  I find that quite bizarre.   

DTDG
Posts: 12
Joined: Oct 2016

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.

lovemyboy94
Posts: 8
Joined: Mar 2017

So sorry!

So sorry to hear about your husband.  If you don't mind me asking, how old is he?  Her oncologist mentioned nothing about bulky disease, and again I could see a one time hospital stay initially, but every time for treatment?  This is why second opinions are necessary. 

DTDG
Posts: 12
Joined: Oct 2016

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. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3325
Joined: May 2012

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

lovemyboy94
Posts: 8
Joined: Mar 2017

This was super informative, thank you so much.  I'm guessing that the treatment will most likley be R-EPOCH, I'll certainly have her ask them on Friday when she see the specialist - she called it a "cocktail" so who knows?  I'm sorry to hear that your neighbor had to get both hips replaced, but very happy that he went into a full remission.  This is what we are hoping for.  Never thought we would be "happy" to get news on NHL instead of Lung Cancer! I'm so happy I joined this site, you are so helpful. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3325
Joined: May 2012

As others noted, r-epoch is common, but a variety of other "standard" combinations exist for aggressive B cells strains. You will know what the oncologist has recommended shortly.  

All FDA approved chemo drugs are available at  chemocare.com , a public site run partially by The Cleveland Clinic and the Scott Hamilton CARES initiative.

po18guy
Posts: 1010
Joined: Nov 2011

With a world-class, destination facility so close, I would strongly advise a second opinion there, as they employ the best and brightest, as well as conducting research. Let's face it; unless treatment is textbook and all goes well, she will end up there anyway. Despite the hassle, the communte is worth it as far as outcome goes.

I tried a "local oncologist" whose advice would have killed me. Both he, and the local pathology lab saw no cancer, when I had 50+ tumors and marrow involvement. Being an hour away from Fred Hutchinson/Seattle Cancer Care Alliance, DW had alrady made an appointment there for a second opinion. That saved my life, as their expertise, research and quality of staff correctly diagnosed and treated me.

lovemyboy94
Posts: 8
Joined: Mar 2017

100%

Exactly what I said - so close to world-class treatment, you ust see a specialist!! Unfortunately, as someone who was considered "young and healthy" her health insurance isnt all too great.  Memorial Sloan doesnt accept her insurance (trust me, this was my first call), but Weill Cornell does, so that's where she'll be going for her second opinion.  You brought up an excellent point about treatment being texbook, which is not always the case.  I'm sure it will be night and day experience compared to the local oncologist guaranteed! 

PBL
Posts: 185
Joined: Jul 2016

You say your friend is a young mother of three young children - Perhaps her doctor has taken that into consideration, and thinks it is best for her as well as her children if she is hospitalized each round of treatment, as it will relieve her of her family "duties" and save her energy while she receives her chemo. It only requires putting a different organization in place once and for all, and makes it clear to all concerned that treatment is number one on the priorities list for as long as it lasts!

Best of luck to her and to you.

lovemyboy94
Posts: 8
Joined: Mar 2017

It could possibly be the reason, but at the same time I think it's less of a risk having her at home after treatment rather than at hospital that is teeming with bacteria.  I'm not a doctor, but to me 4 days is a bit excessive, with children or not. Thanks for the positive wishes :) 

Rocquie's picture
Rocquie
Posts: 836
Joined: Mar 2013

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

 

lovemyboy94
Posts: 8
Joined: Mar 2017

Hi there - 

Unfortunateley, I was relocated for work back in August to Florida, so I'm not up there with her.  We do talk and text every day - as we have for the last decade.  I'm the one who made her the appt with the specialist, doing the research, and making sure she keeps it together.  Her mother and the rest of her family are super supportive so they have been and will continue to be a huge help to her as she makes it through this chapter.  I'm trying my best to make it up there to help her out as much as I can, but as a mother to an 18 month old myself, and a full-time career, its challenging.  I'll be up there the middle of April for a few days, we're both looking forward to it.

I'm in no way doubting her local oncologist, as he came highly recommended. However, given her proximity to a better standard of care, I think its worth taking a look.  Obvioulsy I support her decisions 100%, but at the same time, I know her very well - I know that she can sometimes tend to jump the gun with certain things because she wants to get ahead of it as fast as she can.  I want to be sure she is choosing a doctor and treatment based on knowledge and the best standard of care, rather than the convenience of staying local.  Thank you for the best wishes, how are you doing now? 

JoniNYC
Posts: 2
Joined: Apr 2017

 

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
Posts: 8
Joined: Mar 2017

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? 

Simon24
Posts: 43
Joined: Oct 2015

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

Evarista
Posts: 268
Joined: May 2017

New to the forum, so by way of background: DLBCL diagnosis last January, mediastinal, stage 2.  About to do 6th & final round of R-EPOCH, in hospital, continuous infusion, 5 days.  Rounds 1 - 4 included spinal tap + methotrexate (CSF negative for tumor). We inquired about the outpatient option...Turns out that because patients need to come in every 24 hrs for their "bag change", the clinic has to be at the size and staffing level to be able to handle that. Ours is not, even though they are an NCI Comprehensive Cancer Center.  It's just about the space. That may be true for your friend as well, although it sounds as though she may be able to have local pharmacist + nurse handle this part of things.

About the spinal: in good hands, the procedure itself should be relatively neglible painwise.  Nothing like a bone marrow biopsy!  After my 2nd, I developed a severe headache for almost a week.  Dr. felt this was probably a low-grade meningitis resulting from the procedure.  To combat, she added hydrocortisone to the methrotrexate cocktail for the next two taps.  That plus a ~30-min pre-dosing with Fioricet took care of the issue.  Best of luck.  

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