Diffuse large B cell lymphoma

DLBCL

Jaye,

Let me start by saying that I am very sorry for your mother's diagnosis.  I don't know if this will make you feel better or worse but here's my story so far...and let me qualify it with: I believe my situation to be the exception vs. the rule of how DLBCL plays out.

I am a 48yo male who was in pretty good health (diet controlled diabetic) before I was diagnosed in May of 2013.  I was diagnosed with DLBCL Stage IVB without bone marrow involvement.  While I had swollen nodes, I did not have any other mass (I guess some will have a mass on their liver or lung or whatever).  I went through two treatments of R-CHOP before my oconlogist became worried that I wasn't responding as he hoped.  My spleen, which was the size of a lung, had only shrunk by 50%.  He referred me to Roswell Park Cancer Institute in Buffalo, NY (luckily only 20 minutes from my house).  During the week I waited to meet with them, my nodes along my neck, back of head, groin, and armpits had grown.  Initially the swollen nodes were only in the chest above and below the diaphram.  In fact, my neck was almost wider than my jaw.  I was short of breathe and felt like cr@p.  My new Roswell doctor put me on R-DHAC and we were to work toward a stem cell transplant (auto).  After three treatments, they determined my cancer was becoming "chemo resistant".  He could tell because there was a small uptick in activity in the 3 nodes left showing on the PET scan.  He switched me to R-ICE and they tried to collect stem cells between the 2 treatments.  Unfortunately, I only collect 700k (2million minimum to proceed).  I finished the last R-ICE 6 weeks ago from today.  They tried to collect again last week and unfortunatley I only collected an additional 800k (so still 500k short). 

I had another bone marrow biopsy last week to make sure my stem cells are still viable for auto SCT.  He thinks they are OK because my blood counts are "higher than he would expect if the bone marrow was damaged".  At Roswell, since they are also a research institute, they are also conducting DNA testing on it so I will know the results early next week.  At that point, we'll decide if I can go through another mobilization/collection (like I've done 2X already), a good ol-fashion harvest (asleep and then they drill to get the cells), or look for a donor.

Right now, I have no symptoms of the DLBCL.  This is a bit surprising since it was so aggressive.  It's return is still a concern but the doctor mentioned that Revlimid was recently approved by the FDA for use on DLBCL.  In fact, he says that I have the "germinal center" sub-type of DLBCL which Revlimid has done quite well at keeping at bay and potentially reducing the cancer itself.

The plan is to continue toward the stem cell transplant regardless because that's the best chance for remission/cure.

The questions you posed at the end of your post are similar to the questions that were running through my mind several months ago.  First, let me recommend that you pay no attention to the percentages.  I believe we all have an equal chance of beating this evil monster and it depends on so many factors (past history, physical shape, mental toughness, God's Will).  I know that relapse is possible after the transplant...but whether that is 3 months or 30 years is out of my control.

I recommend that you ask the doctors as many questions as possible and just take it one step at a time.  I've learned that the "decision tree" (my term...not thiers) the oncologists use is extremely complicated.  You can't figure out the path ahead of time...believe me...I was suppose to be cured after 6 treatments of R-CHOP.

Depending on what sub-type your mother has...this Revlimid sounds interesting...keep that in mind.

I've typed everything above very fast so pardon the spelling/grammar mistakes.  Feel free to ask me any questions you wish.  I will be happy to help...that's what we're all here for!

JayeD613 said:

Wow, I'm so sorry for

Wow, I'm so sorry for everything you went through and that you had to go through so many collections to collect enough cells. Kits a good sign that they don't see the disease anymore but the transplant being done anyways would probably help you a great deal. My mom too had the same types of chemo as you, including one that treats Burkett lymphoma as well. The doctor says her lymphoma acts Burkett. My biggest fear is losing her because of how fast this thing grows in a matter of days. She can't even hear out of the right ear and that whole side of her face is swollen tremendously. Im not sure of her subtype but shes in mount sinai in NYC. Theyre using her blood cells from her blood instead of taking them through her marrow, not sure if that makes a difference or not. I know percentages are just numbers but it seems like everything that could possibly go wrong with my mom, goes wrong. I'm still holding onto a tiny bit of hope. Your story gives me hope too. I hope your final outcome results in full remission and cure. This is a nasty disease for anyone to have to endure and I wouldn't wish it on my worst enemy. My prayers are with you as well as my mom. Thank you for sharing your story with me. I also have another question, there was a heart test done to determine if my mom could proceed with the stem cell transplant. My mom failed by 9 percent but because the chemo made her so sick and caused a fever, infection and no blood cells or platelets the doctor thinks that's also the cause as to why she failed because she didnt have a weak heart prior to the last treatment so they're redoing the heart test tomorrow. If she fails again, the transplant is no longer an option. Did you have any problems with your heart test?

Thanks

Jaye,

Thank you.  Reading your post is exactly what was going through in my mind over the past several months--especially the nastiness of this disease and not wishing it on anyone.

Re: stem cell collection:  The way it was explained to me is that a "stem cell collection" is when the mobilize the stem cells (GSF and potentially Mozobil) and collect them via the blood stream.  Sometimes they can't collect that way (numerous reasons).  When they can't collect through the blood they revert back to the old fashioned way ("stem cell harvest") where they knock you out and drill into your hip bone.  They prefer collection vs. harvest because it's less invasive.  It doesn't make a difference from a quality of stem cell perspective.  At Roswell Park, they prefer a minimum of 2 million stem cells however will go up to 5 million.  There are some studies that show the more stem cells reinfused the quicker the grafting.

Roswell Park performed numerous tests on me.  The heart test was one of them...so was a pulmonary test, a physical therapy test, a psych test, etc.  I passed all of the tests however my oconlogist and I noticed that the R-CHOP and R-ICE tends to make my heart beat faster until it flushes out of my system (about 2-3 weeks post chemo).  If I remember correctly, those two treatments can impact the heart where R-DHAC can impact the kidneys.  Although, let's face it...chemo can impact any part of the body.  I also dealt with a pleural effusion (liquid between the lung and the lining of the chest cavity).  This caused short of breath on exersion.  It is now gone and the doctor felt it might have been a result of the fluid they push during chemo ("it has to go somewhere and your body decided to store some there"). 

Your mom seems to have more swelling than I did.  If transplant is not an option--clinical trials are an option (there's a website listing them).  I would also bring up Revlimid.  It may not apply to your mother but you never know.

I pray that your mom improves and gets to the point where she can beat this evil disease!

Again...anything I can answer for you...let me know.

Karl

JayeD613 said:

Thank you for the feedback.

Thank you for the feedback. I'm sorry you had to endure so much along the way. I believe mom's heart beatinv so low was a cause off the chemo, as you said it can effect any organ. Her doctor said that the H in the rchop has been known to permanently damage people's hearts and I hope that's not the case but hopefully ill find out by Friday wether or not she passes her test today (Thursday). I'm not sure why they decided to take from the blood rather than the hip bone but hopefully it works just as well. I pray that it does work. They did mention clinical studies as the next option should the transplant fail. I just don't know if my mom will want to go through anymore treatments. Especially if nothing seems to work. :0(

Prayers

I'll keep all of you in my prayers.

ejgowan said:

DLBCL Diagnosis

My wife was just diagnosed with DLBC NHL today. They already did a PET scan today and are planning on doing a bone marrow biopsy Tuesday or Wednesday, then begin treatment by the end of the week. It sounds like they are planning on using R-CHOP as the treatment. My question is does anybody who has a compromised immune system have experience with DLBC NHL and R-CHOP? My wife is 38 years old and has had lupus for the past 12 years, primarily in her joints. She also has COPD and asthma, although the asthma is well controlled.

We are meeting with the hematologist tomorrow to find out the results of the PET scan.

 

Any information would be helpful.

Wife

Ejgowan,

Sorry your wife is facing yet another serious medical problem. Her form of NHL is one of the most common, and r-chop is one of two or three very common first-line chemo combinations.  I did not use it (I had HL), but i am sure you will get numerous responses. Ask the doc abouot the Lupus issue, although sort of by definition, lymphoma patients have weakened immune situations.  One of her drugs (Prednisone) is a steroid, so be sure to discuss the COPD also. 

Good luck tomorrow,

max

ejgowan said:

DLBCL Diagnosis

My wife was just diagnosed with DLBC NHL today. They already did a PET scan today and are planning on doing a bone marrow biopsy Tuesday or Wednesday, then begin treatment by the end of the week. It sounds like they are planning on using R-CHOP as the treatment. My question is does anybody who has a compromised immune system have experience with DLBC NHL and R-CHOP? My wife is 38 years old and has had lupus for the past 12 years, primarily in her joints. She also has COPD and asthma, although the asthma is well controlled.

We are meeting with the hematologist tomorrow to find out the results of the PET scan.

 

Any information would be helpful.

Update

Results of the PET scan shows possible involvement of the right retroperitoneal lymph node (which would make DLBC stage 3). However, she just had the bone marrow biopsy today so results won't be back on that for about a week. She's been on low dose prednisone ever since she was diagnosed with lupus.

JayeD613 said:

Thank you! So yesterday

Thank you! So yesterday (Monday) my mom was accepted to Hackensack university by dr.Goy to do the clinical trial!! If this works, they can go right to stem cell. If not, stem cell may be off the table and our only option may be hospice unless we can find another trial for her but please pray this works.  They're accepting her as an inpatient which from what I understand is very rare in the case of a clinical trial. 

This is good sweetie. They're

This is good sweetie. They're accepting her as inpatient perhaps due to her fragile state of not eating well etc... They will have better monitoring this way of her overall health as she'll need to be strong for her treatments. We just have to keep her positive and pray a lot that this trial will work so she can go forward with her treatments hopefully for a cure with the sct... Please keep us posted. Lots of luv...