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Diffuse large B cell lymphoma

JayeD613
Posts: 13
Joined: Dec 2013

I am not a cancer patient but a daughter of one looking for support and to hear stories from other patients. My mom was diagnosed with non hodgkins diffused large B cell lymphoma in February of this year. When we discovered the lump the doctor staged it as stage two and localized to the neck area only. She was given three rounds of rchop chemotherapy and radiation treatments. She went into full remission but relapsed about four weeks later. I have a feeling that it was a recurrence and the lymphoma never completely went away but that the cells shrunk enough to make it undetectable in scans. Now the tumor is growing large and fast. She has had four other types of chemotherapy and all four have failed. In fact, two of them acted as a fertilizer and caused the tumor to grow larger within days. The last chemo they did did not help it to grow nor shrink but it did stop it From getting any bigger. Three weeks after the chemo finished it began to grow larger again and grows bigger still every 2 to 3 days. It went from the size of a golf ball to the size of a cantaloupe in a matter of months. Surgery is not an option. The doctors are now discussing an autologous transplant. The one that uses her own stem cells. The tumor is still considered stage two and localized regardless of its size because it isn't in any other part of the body, lymphnodes or bone marrow. My mom is very effected by the chemo side effects so we are super nervous about the risks this high dose of chemo plus stem cell treatment could do to her body but right now it seems to be our only hope. Doctor says her chances of survival at this point are 10-20 percent but leaning more towards the lower number because of how fast this thing grows. He's also looking into an allogenic stem cell transplant should the first one fail but is concerned about grafts vs host disease and how my mom will handle it. If this should fail our only other options are clinical trials or hospice. I can't accept the second part of that sentence. I guess my question here is how many people have had a stem cell transplant with a tumor the size of a cantaloupe but clean bone marrow and localized tumor and a ten percent chance of survival if it works? How many people have relapsed after the stem cell transplant?  Also, have clinical trials put anyone into full remission on here? Any info you could give me would be great. Thanks

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1210
Joined: May 2012

JayeD,

How old is your mom ? What is her overall health, except for  (prior to) the lymphoma ?  These facts may assist someone here who in the past has faced SCT while a huge tumor was still active and present.  I hope someone can offer some advice. 

max

JayeD613
Posts: 13
Joined: Dec 2013

Thank you Max. Her only other healt issues are high blood pressure, SVT which is a fast beating heart and Sarcoidosis which diagnoses as cancer but the oncologist was able to determine that she has both sarcoidosand nod lymphoma. All these things he said really don't come into play with how the out one should come oUt. He said she's in overall good health other than the lymphoma. 

JayeD613
Posts: 13
Joined: Dec 2013

Oh and she just turned 67 in November 

Shoopy
Posts: 210
Joined: Jul 2013

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
Posts: 13
Joined: Dec 2013

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?

Shoopy
Posts: 210
Joined: Jul 2013

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
Posts: 13
Joined: Dec 2013

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(

Shoopy
Posts: 210
Joined: Jul 2013

I'll keep all of you in my prayers.

JayeD613
Posts: 13
Joined: Dec 2013

Thank u

DadysGirl
Posts: 322
Joined: Aug 2011

What's going on sweetie? Hoping you have good news...

JayeD613
Posts: 13
Joined: Dec 2013

:0(

JayeD613
Posts: 13
Joined: Dec 2013

Unfortunately...I'm afraid there isn't much good news. We thought we had some hope when my moms oncologist found her some clinical trials at Sloan, Cornell, Hackensack and chop. He said that shed have better chances of the stem cell working if they could get a clinical trial chemo to cooperate first rather than just jumping to stem cell. We were set on seeing doctor Goy at Hackensack (heard he's amazing) and my mom was suppose to be discharged tomorrow and to go see him for a consultation on the ride home but her doctor here at mt.sinai said there are certain requirements shed have to meet in order to be a candidate. He said shed have to be able to make the ride in the car, get dressed herself, get out of bed herself, walk from the car into his office herself, take pills herself and eat on her own. These requirements are because she wll have to do the trial as an outpatient. Turns out she's just too weak and can only walk a short distance on her own, she is swallowing pills and was drinking only ensure but then it started to cause loose bowels so she was taken off and put back on food through the iv line. She refuses to eat any solids. I try every day to get her to eat but she just won't. She is hallucinating a lot and not sleeping at night. Things are so bad. The doctors are meeting with my family tomorrow morning (Monday) to discuss our options and wether or not the trial is off the table. I pray to God it's not because it seems to be our only hope for remission even with the stem cell transplant. Her chances could've gone from ten to fifty, now I'm afraid were stuck with only ten percent. This tumor has gotten so much bigger in just the past week. They did an ultrasound and its not in her brain or her eye, just putting some pressure on her eye which causes it to be all puffy like. Please pray she can still do the trial regardless of not being able to eat. Anyone else have a trial in such a weak state?

DadysGirl
Posts: 322
Joined: Aug 2011

My thoughts and prayers are with you sweetie. I know how it feels to be so hopeless. I do know for some trials they want the stronger set of people so they have I'm assuming high number of good outcomes. However for us we are not a notch on their number of positive outcomes, we are human beings that are so afraid and worried of our loved ones that all those options are a hope for us for  future with our loved ones... I'll be thinking of you all and hoping you will come back with options that will give hope and encouragement for your mom as well. If no options are available for now,  continue praying... 

JayeD613
Posts: 13
Joined: Dec 2013

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. 

DadysGirl
Posts: 322
Joined: Aug 2011

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...

ejgowan
Posts: 5
Joined: Dec 2013

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.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1210
Joined: May 2012

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

JayeD613
Posts: 13
Joined: Dec 2013

My mom has sarcoidosis which is a compromised immune system too but the r-chop didnt interfere with that at all. It shouldn't hurt her in that aspect. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1210
Joined: May 2012

My sister-in-law learned she has extensive sarcoidosis two years ago.  It is a peculiar disease.  It apparantly looks identical to lymphoma on CT scans, because all of the doctors inolved believed it was lymphoma until a few biopsies proved otherwise.  It is all across her upper chest and is filling both lungs, causeing breathing issues.   She has been told that lung involvement is very common and also that it is virtually untreatable and that there is no form of cure.  It can morph into lymphoma, which is scary, since on a CT I would suspect some doctors will see it and assume that it is just the previous condition.  A sad state of affairs, for certain.   The only good news she got was learning that it is almost never fatal.  

 

http://en.wikipedia.org/wiki/Sarcoidosis

 

.

ejgowan
Posts: 5
Joined: Dec 2013

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
Posts: 13
Joined: Dec 2013

I regret to inform everyone that my mom passed away Wednesday afternoon. December, 18th 2013. Thank you of or all your advice. I'm am just so heartbroken and devastated. 

allmost60's picture
allmost60
Posts: 3175
Joined: Jul 2010

Dear JayeD...I'm so very sorry to hear your dear mother passed away. I was so hoping she would get stronger and move forward to SCT or other trials. My heart goes out to you and your family. God bless you and family during this very sad time. Much love and prayers to you all...Sue

DadysGirl
Posts: 322
Joined: Aug 2011

:((( I'm so very sorry sweetie. I pray for God to give you and all her loved ones patience and strength. May your unbearable broken heart be filled with all the love you have  for your Mom for some comfort... You have done everything you could possibly do and have searched for all possible options to heal your Mom's illness. She is very lucky to have a caring loving daughter like you and of course we are all lucky to have parents who were so strong to fight a disease like cancer while trying their best to be strong for us at the same time... I know there isn't anything I can say to make the pain be any less and I'm sorry for that... Sending prayers to them and doing good deeds on their behalf was something that had given me some comfort.... Luv you sweetie...

Shoopy
Posts: 210
Joined: Jul 2013

I am sorry for your loss.  May God hold you in his hands and grant you peace.  May the memory of your mother always bring a smile to your face and joy in your heart.

ejgowan
Posts: 5
Joined: Dec 2013

JayeD, I'm so sorry for your loss. I don't have the words to express my sorrow. If you need anything, any of us is only a message away.

 

Ed.

ejgowan
Posts: 5
Joined: Dec 2013

Well, we got good news yesterday. No signs of lymphoma in the bone marrow, so just waitng for her first three treatments to be completed for a repeat PET Scan. If the small area of concern is better, then we are looking at stage 3, otherwise if no change, it will remain staged as a stage 2 DLBC lymphoma. She had her first chemo treatment on Thursday Dec 19th. Everything went well so far and she had no reactions or problems with the treatment.

 

Ed

JayeD613
Posts: 13
Joined: Dec 2013

Thank u also much. We had just gotten her transferred from mt sinai to hackensack the day before she passed. When the phase one doctors came in they said the only two clinical trials she may be eligible for we're both chemo drugs that have never been used on humans before but the both involved swallowing four pills twice a week which she probably could've done and she was strong enough to still get out of bed and get to the bathroom. She would get up like every five minutes but they still wanted to do repeat blood work and ct scan to make sure that the lymphoma hasn't spread anywhere else. wednesday she became combative and incontanant with her bladder and i immediately knew something was wrong. They had to pit mittens on her cause she kept scratching at her tumor and ripping it open. We went there specifically to see dr.goy but he was out of town that day so Wednesday he made a stop to her room specifically to see her and he took one look at her and said he'd be back, after reviewing her labs and ct scan he said that he was pretty sure it had spread to her bone marrow and possibly her brain Which is why she was acting the way she was and there I was blaming the mess but he said she was barely on anything except for the pain. About a half hour later hospice called and wanted to make arrangements and I said I wanted to still talk to the doctor some more with hopes of finding something else to try but exactly an hour later, I had just gotten into her room to visit her and she slipped away right in front of my brother aI'd I. That was the hardest thing in my life that I ever watched but I know she waited for us to be by her side. The doctors thought she still had 3 weeks to a month to love, nobody suspected her to pass that day. It was just so unexpected. 

illead's picture
illead
Posts: 565
Joined: Aug 2012

There's not much more to say that the others haven't already said.  What a very sad and heartbreaking thing for you and your family to go through.  Your mother was still young and had many years ahead of her.  I know that that is probably one of the hardest things to deal with. Our hearts go out to you.

Bill and Becky

JayeD613
Posts: 13
Joined: Dec 2013

Thank you. What hurts so much too is that the doctors were so sure it was curable and especially since it stayed stage two the whole time. They were just about to do a clinical trial when everything snowballed out of control. 

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

I am so sorry for you loss.  I have been following this post and hadn't gotten around to responding.  We're here if you need to talk or vent.

Jim

anliperez915's picture
anliperez915
Posts: 756
Joined: Sep 2011

My heart goes out to you and to your family, I'm so sorry for your loss. No matter how old we get we always need our mothers, mine passed away when she was only 53yrs old 4 yrs ago. I will be keeping you in my prayers!

Sincerely,

Liz

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