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Follicular Transformed to Diffuse B Large Cell..Scared

chrismc's picture
chrismc
Posts: 53
Joined: Aug 2012

I was diagnosed with Follicular Lymphoma in 2012 treated with Rituxan with minimal result. Was on watch and wait. I have been having severe pain in abodomen for over a year. Reported this to my Onc he did another Ct and lymph nodes were stable. Went to a Gastro doc and told him of attacks of severe pain and feeling like my intestine was blocked, cannot pass gas, nausea, etc.He did a Colonoscopy showing a finding of one benign polyp. He told me to take miralax and citricel because I am constipated, he said no future appt. needed. Went to another Gastro doc and he sent me for an upper GI.The night before the test I was sick with the pain again but managed to get myself to the test the nex morning. One xray was taken and they would not do the test because of the result. They completed an obstruction series and I was admitted to the hospital for a partial small intestine obsruction. I had emergency surgery at 3am due to tumors blocking my intestines. I had 2 resections and an appendetomy. I had a a nasogastric tube placed for 5 days, very painful. I was in the hospital for 10 days, back for 2 due to staph infection. The result of the biopsy was follicular lymphoma transforming to Diffuse B large cell. Cannot start treatment until incision is healed. Have been for a PET Scan, Muga Scan and will have a bone marrow biopsy on Friday. I have so many questions for my Onc. I don't understand how this was not diagnosed sooner, I have been so sick for a year. I would like a second opinion but need this agressive cancer treated as soon as possible.  He said I will be treated with RCHOP. I have read that there is a good chance of reoccurance when you have a transformation. I am so scared. I feel sick to my stomach, can't think of anything else. 

po18guy
Posts: 1041
Joined: Nov 2011

If you are not being seen at a National Cancer Institute designated cancer center, I would strongly suggest that you obtain your second opinion at one of them. Transformed lymphoma can be a challenge and while R-CHOP is the standard, it is best to have 2 or even 3 other regimens in mind, "just in case."  There are some mutations which "may" occur in the transformation process which make the DLBCL different from primary DLBCL. Sophisticated testing is needed to identify these mutations and an NCI center would be best equipped to perform that. 

I had a distinctly different lymphoma, but it ended up mutating from one aggressive type into two aggressive types. Nevertheless, providence and a brilliant hematologist brought me back from the brink more than once. If you can, try to view this more as a challenge and less as a terrifying threat. Take charge over it, determine to fight it and as odd as it sounds, the more you fight, the more at peace you will be.  

chrismc's picture
chrismc
Posts: 53
Joined: Aug 2012

I took your advice and scheduled an appointment at a National Cancer Center. Deep down I knew I should do it, but sometimes it just takes someone to say it. I have an appt next week at Fox Chase in Philadelphia. Thank you very much for your advice. I wish you the best with you battle against this disease. You certainly have an amazing attitude. 

BrownSugarJones
Posts: 4
Joined: Sep 2016

Thank you for your words of encouraging, both you and Max and also you Chris.

It has been always an easy road for me on R-Chop, just finished my 3rd treatment.   I'm fatiqued and feeling forgotten.  Everyone has a life....

I'm hoping to post a little something about me and the help & or suggustions I'm looking for.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3362
Joined: May 2012

Chris,

I'm sorry you're facing this frightening new battle.  Diagnosing any lymphoma is too often a slow and inexact science.  You said you had a PET scan. If this was after your surgeries, know that healing tissue will show red (hypermetabolic activity).  While all doctors know this, I would ask them when you get your results how they differentiate between the healing tissue and potential lymphoma activity.

There are so many hundreds of writers here who have recovered from relapse and prospered. I hope that is reassuring to you.

max

chrismc's picture
chrismc
Posts: 53
Joined: Aug 2012

Thank you so much for your encouraging words and advice. Just yesterday I decided to get a second opinion from Fox Chase Cancer Center in Philadelphia. It is a National cancer center. I called yesterday and already have an appointment for next Wednesday. They are requesting the slides from my biopsy and will be doing detailed testing on them. I will be seeing a doctor that specializes in Lymphoma. Even if the same treatment is reccomended, I will feel that I have done the best I could for myself. 

po18guy
Posts: 1041
Joined: Nov 2011

In my mind, the last thing a person would want to do is try to run and hide from it. That is a concession to it, a surrender, if you will. Neither does it bode well to procrastinate, deny or even break down in tears. It has power over your body, but try not to give it one iota of power over your mind. Even if, and especially if, you are not a fighter by nature, the battle has been brought to you. As you stand to fight back, keep in mind everything and everyone that you love, and who loves you. That, and all of your future life possibilities are what you are fighting for. Love is being tested and proved. At the same time, the future is not everything - you are still alive and living through this entire event. No one asked for it, but we are all being strengthened by this. Consider it to be on-the-job assertiveness training. 

I would not obsess over it, but it may suit you to learn about it now that you will know precisely who the enemy is. Ask about research and the absolute latest papers and clinical trial data from the various national meetings (such as ASH) which doctors attend. Bounce ideas off of doctor, as they cannot have every single thought in their mind. Perhaps, neither do their fellows. So, it is up to you to either have your ideas shot down, or every once in a while, cause doctor to utter a "hmmmmm...." Do not be afraid to annoy doctor, nurse etc with questions. Medical practitioners are not always the best communicators and sometimes, you have to spoon the words out of their mouths, so to speak.

Sad to say I've built up some street cred in this area. My philosophy may not be for you, but it certainly has worked in my case. Even though my dad had very little chance against his lung cancer, I watched him surrender. I will not!  

chrismc's picture
chrismc
Posts: 53
Joined: Aug 2012

I have been reading all about this disease. I believe you must be your own advocate or you can get lost in the system. I like your philosphy on how to live through this and I will definetly follow some of your suggestions, I WILL NOT SURRENDER. You certainly have the experience, and I thank you for sharing. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3362
Joined: May 2012

Chris,

Over the years I have become something of a soul-mate of PoGuy. We have never met, and do not write directly to each other too often, in part because I find myself always agreeing with whatever he has written (at least 95% of the time).

There are mostly "techincal" posts here at the Boards: something about this drug, that doctor, this hospital.  But there are also "attitude" posts, the mental world-view that best allows a cancer patient to succeed.  In my opinion, PoGuy is the master in that area, as well as regards T-cell disease.  I have heard many people, even educated people, say that if they got cancer they would "never use chemo; they'd rather die instead."  Well, I suspect if they got the diagnosis, their bravado might wane, but I also find their attitude incomprehensible. It is not a line of thought that I could ever share.  Just me.

Po has used I think over a dozen differing chemo drugs, several complex relapses.  I have been crushed in an auto crash, done years of rehab, advanced Hodgkin's, minor prostate cancer....  I do not mean to embarrass him or speak for him. But being like him is how to come out of this a winner.

There are cases that are hopeless, cases that end badly, and that is not anyone's 'fault.'  I recall DixieGirl who wrote here for years, she was everyon'e darling. She passed a few years ago, but she fought like a brigade of cornered marines. Here stuff is still here at the Board.

As the song says:   There aint no easy way out.    https://www.youtube.com/watch?v=nvlTJrNJ5lA

Tom Petty hit. Ringo Starr and George Harrison helping out.  Guy with red beard is Jeff Lynn, the founder of Electric Light Orchastra (ELO).  On the submarine, a bunch of us guys did music trivia all the time, to pass the time.

max

 

chrismc's picture
chrismc
Posts: 53
Joined: Aug 2012

Thank you Max for sharing you story with me and telling me about PoGuy. After I read the the message from him I did my best to adjust my attitude. I was just sitting around worring and basicaly my life stopped. After reading his communication, I called to make my appointment at a National Cancer Hospital, and I decided that I will make the most of every day. We do not know when our last day will be, and should not waste a day filled with all worry. I am the type of person who asks a lot of questions at my Dr. appts. and I do a lot of reading about lymphoma. I should have gone for a second opinion before this time.  My largest node is 6cm and I had that undiagnosed intestional pain. Now I have to deal with the transformation.  I was on watch and wait and was afraid a second opinion would be chemo.I realize now that I did not do the right thing. I should have stood up to this disease and showed courage. You have been through so much, and must be a very couragous person. Thanks again, and please keep in touch.

Christine

 

po18guy
Posts: 1041
Joined: Nov 2011

I am no hero - rather I seem to be resilient and durable - traits for all of humanity to call upon when needed. This is a condensed history of eight years. I have been at stage IV twice that I know of. There are almost innumerable complications not listed, but these are the high points. The real point is that life remains worth living. Despite our illness or wellness, we can still live and love just as much. 

07/08 DX Peripheral T-Cell Lymphoma-Not Otherwise Specified. 50+ tumors with BMI
08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
02/09 Relapse.
03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles
07/13 Relapse/Suspected Mutation.
08/13-02/14 Romidepsin increased, but stopped due to ineffectiveness. Watch & Wait.
09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
10/25/14 Clinical trial of Alisertib/Failed.
01/12/15 Belinostat resumed/Failed 02/23/15
02/24/15 Pralatrexate/Failed 04/17/15
04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Two dozen tumors + small intestine involvement.
04/22/15 TREC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
BMB reveals Myelodysplastic Syndrome (MDS), technically a third cancer.
07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
07/16/15 Total Body Irradiation.
07/17/15 Haploidentical Allogeneic Transplant receiving my son's peripheral blood stem cells.
07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
07/23-08/03/15 Blood nose dive. Fever. Hospitalized two weeks.
08/04/15 Engraftment official - released from hospital.
08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
09/21/15 Acute skin GvHD arrives. DEXA scan reveals osteoporosis.
09/26/-11/03/15 Prednisone to control GvHD.
To date: 17 chemotherapeutic drugs in 8 regimens. 4 of those drugs at least twice.
Knowing the redemptive value of suffering makes all the difference.

chrismc's picture
chrismc
Posts: 53
Joined: Aug 2012

You did not give up and your doctor did not either. May I ask where you recieved your treatment?  If  I start to feel down, I am going to read your post again...and again. Your attitude amazes me. Thank you so much for sharing your battle. I am very  pleased to have met you, and wish you the best.  Please keep in touch. 

Christine

po18guy
Posts: 1041
Joined: Nov 2011

I didn't set out to accomplish all of this - it just sort of happened as time passed. My journey could have been much shorter, but I chose the "research" path instead of the "transplant" path, as doctor is a researcher and I wanted to participate in clinical trials. But, when the drugs ran out, it was finally transplant time. Chris, the bottom line is YOU can do this.  The force of the human will cannot be underestimated. 

I have been compared to the Energizer bunny. Honestly, I feel more like the drum. 

chrismc's picture
chrismc
Posts: 53
Joined: Aug 2012

Yes I can do it. I will give it all I have. I just went through the surgery for 2 small bowel resections to remove the lymphoma that was causing an obstruction. That certainly was not easy, but I survived .My surgeon is pleased that my recovery has gone so well.  I will face this head on as I have done with so many other things in my life. No one ever said life would be easy, and it is worth the fight. Thank you so much for your encouraging words.

Christine

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3362
Joined: May 2012

Christine, (My daughter's name, but spelled with a "K")

I read a post here once which, although it seemed a little "negative," rang true to me.

Someone was praising a guy for all he had gone through. This was at least two years ago, and I do not recall the parties involved. The guy reaping praise wrote back:  People do what they have to do.  It is do "this," or die. Not a lot of choice or hero involved.   I have been interviewed on the media for my medical adventures.  I tell them: I am not a brave man, or a strong man.  I am a man who did what he had to do to live.  Ultimately, very simple.

We learn and fight, or we can lie down and lose.  We all have these choices which define us.

One of the best female voices ever in soul music. Cancer is our Thunderdome .  I love the line toward the end:  "Give it all or nothing."

https://www.youtube.com/watch?v=QMAULOwDY1Q

max

chrismc's picture
chrismc
Posts: 53
Joined: Aug 2012

Hi Max

Sometimes it takes an example from others to get onboard and do it. Like a kick in the pants...... It is easy to sit back and say "why me", but when you realize there are so many others fighting for their lives, it is attitude changing. 

I have made my choice, and I feel good about it. 

I got the results of blood tests I had on Saturday for my Dr. appt. All was normal, including LDH. I was pleased with that. 

Do you listen to music often? I find that it changes my mood, and gives me a lift when needed. Therapy. 

Christine

Sal0101's picture
Sal0101
Posts: 126
Joined: Sep 2015

Well, that post certainly keeps me thinking!  Yep, I like life too! 

Sharon

chrismc's picture
chrismc
Posts: 53
Joined: Aug 2012

I had a Pet Scan after my second RCHOP treatment and my Onc said I am doing well and the lymphoma has a 50% response.  The area of  DLBC on my humerus is gone, and the others have reduced in size. Uptake has also decreased. After my appt., I came home and did some online reading. Now I am thinking that I should have had a better response. Am I expecting too much at this stage of treatment...or worring too much? 

I am tolerating the RCHOP well and it is not nearly as bad as I feared. I had my 3rd treatment yesterday, and I feel better than the first 2. 

I think I have my warrior hat on and sword in hand......

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3362
Joined: May 2012

Christine,

I'm glad you're updating.  50% reduction of any cancer after two applications seems wonderful, and shows strong movement in the right direction.  It is when there is no reduction, or even enlargement of the tumors, that plans have to be rethought, medicines changed.  And there are many such cases here at any given time.

How many infusions are you scheduled for ?  This is unofficial, but it seems doctors plan infusion cycles for about double the number that they think it will take to get a patient to N.E.D.  That is, at your halfway point, they would hope to see very little remaining activity. The other doses are to kill off undetectable, residual lymphoma cells.  I did 12 infusions over six months. After 3 infusions, I had a 50% to 60% reduction in tumor size.  Extrapolated, this would render the tumors gone after 6 infusions -- my halfway point.

Many patients have written here over the years, saying somthing like "I have no evidence of disease remaining, but the doc want me to do x number of remaining cycles."  It is critical that those cycles be completed.   Totally guessing, I would think you are scheduled for six cycles, or thereabout. I am interested to hear what the actual number is.

Keep wearing that toga, and the silver gobblet in your hand !

max

chrismc's picture
chrismc
Posts: 53
Joined: Aug 2012

Hi Max,

I am scheduled for 6 infusions, tomorrow is my 4th. I have not felt good for awhile due to either a cold or sinus problem and fatugue. I finally am starting to recover, it is now time to get another infusion. Things could always be worse. I have not had any mouth sores, or bone pain. Nothing tastes like metal or cardboard, and my appetite is fine. I  just hope when I am done with this I will be in remission. 

Christine

misujlh
Posts: 5
Joined: Oct 2012

I was diagnosed with Follicular Lymphoma and  CLL in 2012 treated R-Chop with Rituxan 2 year maintenance.  The good chance of reoccurance has my mind on overdrive as i come close to the 5 year mark. i also have not been on for a while. The fact that I can return is of great comfort. Hope all is well with you!

catwink22's picture
catwink22
Posts: 280
Joined: Sep 2009

Hi Christine,

I was just wondering if you received your 2nd opinion? I too was just recently diagnosed with DLCL after having been treated for Follicular w Rituxan only, but I have mutations so I am considered "double hit". I was originally scheduled to start R-Chop but they changed my chemo to Hyper-CVAD the night before. It sounds as though you have had many more complications. I too suffered for almost a year with hip pain & they told me it was muscle spasms. Looking back I was so relieved I didn't want to believe anything else. I have a large tumor that has done bone damage. The not knowing what to do or are we doing the right things, or are the right choices being made are the hardest parts for me. There are so many success stories here & they are so inspiring. Thank you everyone for sharing your stories it does make us stronger.

Brazzi2008
Posts: 1
Joined: Jan 2017

 Had non-Hodgkin's lymphoma and transformed into diffuse large B cell. On my fourth chemo treatment and everything seems clear so far. Very thankful there was none in my bone marrow or any of my organs. Still, very scared and unsure about the future, but keeping all my trust in God .   I really believe I am going to beat this and encourage you to believe the same. Cancer is no longer a death sentence, however it is a challenge. Keep yourself positive and trust in the Lord. You can't beat this. They are recommending that I get a stEm cell transplant to increase the chances of it not coming back.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3362
Joined: May 2012

Brazzi, cat, misujih,

A regular here about three years ago coined a term for the fear of relapse that we all have: "Scanexity"; anxiety during annual or periodic follow-up scans.  I am not certain of the writer, but believe that it was Roc.

mis, Follicular is indolent, as you  know better than me, and the indolent strains are more prone to repapse; I know, having had NLPHL, which is an indolent HL that has an approximately 15% relapse rate after full remission.  And this can happen 10, 15, any number of years later.  I focus on the fact that these numbers mean also that the disease has an 85% liklihood to not relapse. In the cancer world, that is astronomical.  The late and great Pennsylvania Senator Arlen Spector's first lymphoma was NLPHL....he had two subsequent relapses in differing strains, all spaced far apart, before his end.

Brazzi, your attitude is the best, and the perfect way to face an uncertain medical future.  We lymphomaniacs do not die from lymphoma so much as we live with it.  But this is not to say the life is easy.  It is also not to deny the reality of dying:  20,000 a year in the US are taken by lymphoma. But among the millions living with it,  this seems like better chances than most cancer patients have.  My indolent strain has a high relapse rate, and like many indolent strains, also commonly comes back as a more aggressive form: usually either a large-B or, a leukemia.   If it ever does recur (I am lymphoma-clean going on seven years now) I do not think I will fear death, but rather dread the amount of work and disability that salvage treatment involves.  I would recommend that you do substantial research before deciding on a SCT.  Newer modalities for many forms of relapsed lymphomas work as well and are less draconian than SCT.

Wishing the best for all,

max

lindary's picture
lindary
Posts: 679
Joined: Mar 2015

Max is right about researching the SCT. I was all set to start SCT after the collection. However we ran into problems during collection. After 2 days they had collect barely 1/3 of what they wanted. We went in for a third day of collection but the Dr stopped it before it started. My platelets had kept dropping and the counts that mroning were too low to continue. So the Dr. decided to put it on hold (this was the second time that was done). Two months later they did what was the 3rd set of scans after my RICE treatments had ended. The scans came back clean. A month later the SCT Dr told me they were taking me off the SCT list. Recommendation was to do the 2 years of Rituxan maintenance. When I asked about the stem cells that had been collected she told me that they had been frozen but chances are if the cancer comes back there will be newer drugs and treatments.  I am not really sure why the Dr decided to not do the SCT but I am glad to be going down the road I am on. I just hope for the best.

 

ggraphix
Posts: 4
Joined: Jan 2017

Our family doctor saw "cancer" in my husband's abdomen in Oct 2014.  A CAT scan of his abdomen, done to fine the cause of an unexplained fever, showed multiple enlarged lymph nodes.  She came to us in tears with the diagnosis and sent us up to Huntsman Cancer Institute in Salt Lake City.  Earlier that year, he had a stage 1B melanoma removed from his right thigh, followed by an epic infection that took 2 months to heal.  We had to make the appointment for the abdominal cancer in the dermatology department, because our doctor assumed that it was relapsed Melanoma.  The Oncologist had a couple of radiologists look over the scan, and they said it was "nothing", that the lymph nodes were the same size they were on his April 2014 scan, and not to worry about it.

In October 2016 he was having trouble eating.  He was complaining that food was getting stuck going down.  I took him to the ER, and they admitted him.  Assuming it was a bleeding ulcer (there was blood in his urine by then), they did a biopsy, which came back as DLBCL with a "triple hit". He had MYC, BCL2, and BCL6 mutations.  He went back to Huntsman, this time to Hematology, and has just finished 2 long cycles of CODOX-M/R-IVAC.  He came through the treatment alive, but with side effects.

From everything I've read, I'm convinced that he did have some sort of indolent lymphoma in 2014 that transformed.  His doctors (HEM) refuse to look at the earlier scans done in 2014 (DERM) at the same hospital, saying it would not make a difference.  I think they are just trying to protect their collegue.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3362
Joined: May 2012

Your husband's case, in a very general way, is somewhat similiar to mine: I have so many issues, that doctors cannot grapple with all at once, and focus on just this or that.  But your husband's case is so convoluted that, most likely, it will never be known when he contracted what, or why.

The only positive approach is to address what is known now, and move forward as aggressively as possible. Your last sentence is conjectural, and would have the doctors operating in a highly unethical manner, fortunately something that I have never encountered myself.

max

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