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Newly Diagnosed

Anonymous user (not verified)

My husband was recently diagnosed with Germinal, Diffuse Non-Hodgkins Large B-Cell Lymphoma, late Stage III/early Stage IV.  No organ involvement on the PET they ran on May 9th; but does have multiple lymph nodes that are affected.  (One in his neck, one in his chest, one in his abdomen and one in his pelvis).  He had emergency surgery on April 21, 2018 to remove a baseball-sized tumor in his small intestine.  They weren't able to start the standard R-CHOP chemotherapy until this past Thursday because of an infection he developed after the surgery.  Obviously, we are extremely frightened and feel this is much like a race against the clock in achieving the cure they told us is possible.  Apparently, 60% of patients in the intermediate risk assessment they placed him in are fortunate to achieve one.  

He had a reaction to the Rituximab at the clinic with a sudden small rash that appeared on his lower right arm and some small red spots that appeared about a 1/4 of the way into the dose that was hung through his port.  He also started shaking uncontrollably, so they stopped the infusion, waited for a bit, gave him some more Benadryl and started the infusion again.  He, thankfully, endured the rest of the therapy and we were sent home.

He seems to be doing fine.  No nausea (thank God!), is eating and has managed to get a fair amount of sleep.  My biggest question is whether or not anyone else, after their first hit of chemo, has felt this good (outside of some nominal fatigue) after coming home that first time and whether or not the more serious side effects may still affect him later this week, into next, or if after this amount of time we can count on his apparent tolerance of all of this to continue.

His next cycle is set for June 14th, and we were told that after his third (July 5th), they will be running another PET to check and see if the treatments are working.  Once we pass that point and can see some improvement, I think we'll rest much easier.  However, if there is little to no improvement, they will begin a harsher treatment to combat it and prepare him for a SCT, so we were hoping to find out from someone who has had similar circumstances what THAT may be like.

If someone with a similar diagnosis, who has/had similar lymph node impairment survived all six cylces on schedule and was as fortunate as my husband has been with few side effects this soon after the first course, I was hoping you could share your experiences with your first cycle and any subsequent ones that either followed this same pattern or if things worsened. 

Also, if anyone who was given a similar initial diagnosis who may have failed R-CHOP and then had to undergo a SCT, would be willing to share their experiences, we would be most grateful.

Thank you for any information you would be willing to share!

po18guy
Posts: 925
Joined: Nov 2011

Treatment manifests itself slightly differently in each individual. If the DLBCL is not of the "double-hit" or "triple-hit" variety, then it most likely will be placed into long-term remission by primary therapy. Reactions to rituxan are fairly common and can be dealt with. As to staging, I would not worry about that, as lymphoma staging is completely different from all other cancers and lymphoma remains treatable at all stages. Stem cell transplants are frequently used in cases where the lymphoma stops responding to treatment, or if it relapses after remission. 

Ther type of transplant normally used in such cases would be his own cells (autologous transplant). While the preparation for the transplant can be rough, he is pretty much guaranteed that the transplanted cells will "engraft" in his marrow and bregin producing bloodcells shortly after transplant. Autologous transplants are far less risky than allogeneic transplants, in which donor cells are used. 

At this point, his job and yours is to maintain his nutrition as well as possible, make certain that he takes his oral medication, as he is very susceptible to infection - a major enemy. He should notice a reduction in symptoms and the mid-term scan will dtermine the direction of treatment therafter. 

I had quite different lymphomas (T-Cell), but both were aggressive and relapsed multiple times. It was my seventh treatment regimen that placed me in full response for an allogeneic transplant, which you can see I also survived. It is nerve-wracking at the start, but things will begin to settle down soon, if they have not already. Here is a link to the DLBCL page at the Lymphoma Research Foundation

twowheels's picture
twowheels
Posts: 13
Joined: Jun 2017

I like the latest image/avatar (smiling on your bike). Enjoy the ride.

po18guy
Posts: 925
Joined: Nov 2011

That's a pic from 2012. Since then, I've added a 203mm front and 180mm rear floating discs, upgraded trigger shifters, a WTB Speed V saddle, an adjustable stem and (ahem!) about 10 pounds. Embarassed

Anonymous user (not verified)

Thank you, my friend.  Your experience is invaluable to me . . . to us . . . so, I appreciate your sharing very much!  In your case . . . did things, after that very first week after chemo become better, stay the same or worsen?  Terry, thankfully, is pretty much the same as he was the day of.  No visible signs (yet), other than that wave of "I have to sit down for a minute", here and there.  Tomorrow will be 7 days after; so, we're hoping we're over the hump and can prepare for Round 2 on June 14th.  His hair will probably go, I think that's a given, right?  He doesn't want to do anything about it until the 12th; hoping we won't have to shave it off.  Do you recall how long after your first "hit" it took before you started to lose it . . . if you even did?

The other question I had was . . . if they have to delay things because of low blood counts, do they delay it for a few days, weeks or wait until the next scheduled course?

Lastly . . . you being a guy and all that . . . did you allow yourself to shed a few tears over it all, or were you one of those "I can do anything" and keep your emotions at bay through it?

Scubamom for two's picture
Scubamom for two
Posts: 11
Joined: Apr 2018

Greetings "Afraid Again,"

 

I agree with po18guy about each experience being unique.  I was diagnosed with DLBCL, likely germinal center cell type, last August and endured 6 rounds of DA-R-EPOCH ( like R-CHOP, but with Etopiside added) and 2 rounds of High Dose Methotrexate as a prophylactic measure, along with about 12 lumbar puncture injections of alternating Methotrexate and Cytarabene.  I had no lymph node involvement, instead the cancer attacked my bones and bone marrow.  Because this type of cancer is very aggressive, my amazing team at MD Anderson chose an aggressive treatment plan and so far, it worked!  I had my first quarterly scans and check-up in April and there is No Evidence of Disease (NED), other than some of the previous bone damage.  So, I am still in REMISSION! 

Although everyone responds a bit differently, for me, the first round was the easiest.  After round two I was still doing pretty well and was able to take a week-end trip to Austin with some family and explore the area.  I traveled home to CA for a visit and somehow contracted an infection in my PICC-line, so I had an extra 4 day hospital stay where they pumped me with antibiotics and fluids (at one point my BP was so low they feared Sepsis and boy did the staff respond quickly to that).  They took my PICC-line out and when I returned to Houston, I had a whirlwind day of Brain MRI, PICC-line placement in other arm, PET-CT, blood work, and Dr. visit.  The labs came back Neutropenic/very low white blood cell count, so I had to delay going into the hospital for round three until the following day and they gave me a Neupogen shot (very expensive and took a couple of hours to get my insurance to approve it).  I was able to start my third round of chemo and immunotherapy about a week late, which was due to getting the infection and then needing my white blood cell count to rebound. 

Each subsequent round took a toll on my energy levels.  I struggled a bit with mouth lesions after rounds five and six, but did not get them during the two rounds of High Dose Methotrexate.  I tried to walk every day as much as I could even while in-patient in the hospital I would at least get one mile in and even when I felt pretty crappy.  I had a couple of bouts with nausea during rounds three and four especially.  I think mine was behavioral-related because I had a very hard time swallowing and keeping down all the pills each day in the hospital, especially the big awful tasting Prednisone pills.  It wasn't until round six that I was able to get an IV infusion version of the Prednisone and I think that helped.  I did take the anti-emetics precribed for about four or five days after each round and that helped a lot.  I also took both types of anti-emetics provided intravenously while in the hospital getting my treatments.  As the experts recommend, it is best to try to stay ahead of the nausea and take the meds that help prevent it.  Once it comes, it is harder to intervene.  For me, I slept better once I got back to my short-term apt. after each round as compared to after finishing up all the treatments.  I am still not back to my normal energy level or strength and my last treatment was in mid-January.  I did go back to work a month after I finished my treatments and I think I could have worked some days during my treatments if I had been living at home.  I have been back full-time since mid-March and I am mostly doing ok, but definitely still get tired a lot.   This is a kind of tired that does not go away from getting any amount of rest-at least that is my experience so far. 

I was a pretty active and healthy person prior to this diagnosis and I hope to get back to that or as close as possible, but most everyone says it takes about a yr. to feel like yourself again!  I have always been a bit of an over-achiever, so I hope it won't take a whole year!  My blood counts did return back to a "normal" range by my three month check up and I am feeling close to ready to take my rode bike for a spin.  My husband and I are planning a trip to Hawaii in July and I think I will be ready to go SCUBA diving again by that time!  Anyway, I thought I would provide just a somewhat random snap-shot of my experience in the hope that it will give you some idea about what your husband may experience.  Whatever comes, I think it is safe to say it is a life-altering experience for both of you!  Please take good care of yourself so that you can be there to support him.  Your journey is not easy, but from what I understand, the odds are very good that he can get cured-especially if he doesn't have the Double-hit or Double-expressor sub-types that are more resistant to the current treatments available. 

 Be well,

Scubamom for two

     

Anonymous user (not verified)

How can I ever thank you, Scubamom?  Your story gives us so much inspiration and courage to face what lies ahead.  We are most grateful for you sharing your story.  Will probably write more this weekend as I have a few more questions for you . . . too tired this evening.  But the information is exactly what we were hoping to find in joining this site.  Learning from people who have experienced some of what we have and hearing what others have experienced in their own journey is what we're hoping to find in sharing ours.  THANK YOU!!

po18guy
Posts: 925
Joined: Nov 2011

You might try something. Get a spiral notebook and write your worries down as they occur. Once or twice monthly, go back and cross off the worries that never materialized. I'll bet that you cross all, or nearly all of them off. This method allows you to see your worries rather than simply feel them. If some are rather silly, you will be able to recognize that. It gives you the power to write them down and "destroy" them by crossing them off. It lets you know that, while completely natural, worry is very counterproductive. When you ponder those crossed-off worries, you might just notice a trace of hope and empowerment creeping in. That is a good thing and the intent of the exercise.

I am so dense that I worked 10 hour night shofts through two months of CHOEP-14. My thinking was that if I stayed home, I would focus too much on being sick. So, I worked. However, when I began the second two months of treatment with a different regimen, I knew it was time to stay home. I was beat up by the side effects. The effects of chemo are cumulative, but mostly reversible. And, treatment does not last forever.

I kept my hair somewhat longer than usual, but when I woke up with hair in my mouth, it was time for it all to go. I didn't want to look like I had the mange. Anyway, for guys, there has never been a cooler time to be bald. If he can still grow some facial hair, a goatee (or even a soul patch) is really cool with a bald head. My 2¢.

Don't worry about missing a treatment. It is done for valid reason and the lymphoma will still be there and still be treatable. Neulasta or Neupogen can help restore those white counts. I cry over many things, normally when heartstrings are tugged, or during spiritual experiences. Did not cry during cancer. Mileage varies in this regard. Cancer is the bully that just walked into the room and crying was not an option until the fight was over. However, men and women experience the entire array of emotions. If crying is needed, then cry! At the least, it is cathartic.

My faith had prepared me for death, but death never came. So, I just kept on living. And, so it has been since 2008.  

Anonymous user (not verified)

You are one tough dude.  Glad to know you!  Thank you for sharing more of your personal experiences.  It helps more than you know to hear from someone who has been through this, what they think helped them get through.  Will probably write more in the days to follow.  In the meanwhile, know that we are encouraged and inspired.  THANK YOU!!!

po18guy
Posts: 925
Joined: Nov 2011

You can read this on a rainy day. It's current to about two years ago. Back when my medical records only weighed 7 pounds.

ShadyGuy
Posts: 331
Joined: Jan 2017

Tell me again how info on multiple t-cell lymphoma battles helps you fight an entirely different disease? Its nice of Po to share his experiences over and over and over and over again and I believe it is helpful to many. I know I have learned from him. I just don’t see the relevance of bicycle uniforms and the repitition is boring. And occasionally (like today) his posts are thinly diguised ads for forums where he speaks. No doubt though his struggles are the stuff of legends and the bards will surely sing of his glories when he is gone. The rest of us, especially the ones with ”sissy” lymphomas like FNHL will be forgotten. I just wish there was a way to motivate others with much longer struggles (10 years is not that long in FNHL for example) to be more outspoken with help for the majority of people here who have DLBCL and especially FNHL which is a lifelong struggle. The main issue I see in sharing info and strategies for fighting lymphomas is the staggering variety of things going on and the sparse details available. The best source is a well informed oncologist. If you have one hang on to him/her! I find many of the news type articles on the topics very very sparse and seem often, like some papers, written with the aim of securing research grants and are very superficial. A good example is the current CAR-T hullabaloo. It sounds great until you dig  into the details and see the many serious drawbacks which the news releases never mention. I guess its up each of us To carry on as best we can.

i am going down to the creek to catch lunch. Not very relevant but I couldn’t resist!

My very best to everyone, especially PO. I am the eternal skeptic but well meaning.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3083
Joined: May 2012

Since you are expert in "all things Po," Shady, perhaps if what he writes is not to your taste, you could avoid reading his posts ?

I have never had T-Cell disease, or relapse of any form.  Yet newcomers no doubt find solace in accounts which document surviving multiple relapses and, last count, 18 chemotherapy drugs.  Often the issue people are most challanged by is the issue of hope.  So many introduce themselves with a first cancer experience and are unfamiliar and terrified that it is the end.  Accounts like Po's show this to not be the case.  Not every post need be a technical dfiscussion of pharmacology or statistics to be relevant.

It seems your are somewhat fixated on this, having mentioned it so frequently over the last year.  Your view is a view of one.  Surely your advanced rationalism will assist you in finding a work-around for your issues. What is more predictable than Po's clinical history are your responses,

max

ShadyGuy
Posts: 331
Joined: Jan 2017

What does this have to do with you?  Tell us again (30th time?) about that traffic accident you had 30 years ago. If you must know what made me look into this whole PO thing was his assertion that cancer was good to him and that if he could go back in time and choose whether or not to have cancer he would choose to have it. That is perverse in my opinion and tells me what he is all about. Cancer is not a good thing and no one who thinks it is should go unchallenged. I will pull that quote and re post it. If I survive this, which looks unlikely at this point, I will move on. You and Po have been disease free for many years yet still hang out here. Ask yourself why. Is cancer your life? Is it a part time job? Thats ok if it is but don’t pretend otherwise. How is promoting for profit seminars on here any different from the lawyers who occasionally post on here looking for clients? You always challenge the lawyers.

quote from PO December 2017  - “If I had to go back 9 years and choose health or cancer, I would take the cancer. really”. He also grants permission to evaluate his statements. Thats exactly what I did.

po18guy
Posts: 925
Joined: Nov 2011

I am trying to encourage other cancer patients, as there are many factors that we hold in common in this battle. If my posts bother you, why not skip them?

ShadyGuy
Posts: 331
Joined: Jan 2017

No one has to read anything. Very true indeed. Why do you read my posts? I have no problem with taking a bad situation with a very serious disease and turning it into a cottage industry. Making something good out of something bad. I am very aware of how “free” seminars are organized and funded. The large drug companies start with funding and professional seminar organizing companies take over. Its all about money. How do they make money? Selling patient lists and organizing charity drives - for a major cut of the proceeds. Its a very large industry. Anyone attending such seminars can expect to be flooded with marketing and donation callS. I like the picture of your halloween costume. Just kidding, really.

Anonymous user (not verified)

I'm no expert on lymphoma, as my husband and I just started our "journey" with chemotherapy; but I am no stranger to serious health problems as far as he is concerned.  I think everyone handles health challenges in different ways and I don't think there is necessarily a "right" way or a "wrong" way to deal with them.  Everyone is unique and what's right for one person may not be right for another.  What I HAVE learned is that no one should be made to feel that it is wrong to cry, laugh, get angry, feel sad or ask for help when they need it.  To deny yourself any one of those things is to deny yourself a step in coping.  Healing involves both your body and your innerself.  

As I said, my husband and I both have had to learn the hard way what it is to fight . . . fight for decent medical care, fight for yourself and that special someone you love.  My husband was misdiagnosed for years before they finally got busy and treated him correctly.  Long story.  I'll try and give you just the highlights.  Although, in doing that . . . a lot of our suffering, the time we lost with our family through some of the sweetest moments we should have been able to share will never be recovered.  It has left us both "scarred".  It has forever changed me (both in good ways and bad).  But he has been with us for a good 12 years that may never been shared if I hadn't turned into the queen "B".  So, this latest struggle with his lymphoma in a lot of ways, will be less complicated and it doesn't seem we will have beg for the help we had to beg for in the past.

In 2006 he started exhibiting large losses of protein in his urinalysis tests, along with a certain amount of blood.  Each test came back with increased amounts of both.  We had to fight for scans and answers as to why this otherwise extremely healthy man of only 50 year kept getting sicker and sicker.  We endured repeated trips to the ER, suffering from extreme pain and pseudo pneumonia.  In 2008, after fighting for a kidney biopsy, they diagnosed him with MGN (membranous glomerulonephropathy), a kidney disease known to have several different causes, one of which was Hepatitis C.  If the cause could be discovered, the kidney disease would cease. 

Shortly after the biopsy, he suffered his first pulmonary embolism and was put on blood thinners, sentenced to a prognosis of continued kidney decline and ultimately home dialysis.  I could not accept that diagnosis, as they had all but given up looking for the cause without pursuing many of the things known to be the reason for the disease.  I begged, did hours of research into the wee hours of the morning after putting in a full day's work, layering bed sheets due to drenching night sweats he suffered from . . . nearly lost my heart and my mind in the process.  One of the main reasons I kept fighting was a doctor in South America agreed to look at my husband's lab and imaging tests I had found on the internet who had written a paper on MGN.  He wrote back to me and said there was something seriously wrong with my husband and that I should not give up in my search for an answer to his declining health.  He said my husband was lucky to have me.  That support, offered to me in broken English from a different continent, emboldened me to keep going.  I even went so far as to purchase a text book from the university many of the doctors we were seeing attended.  With each appointment, I took that book, with my highlighted text which supported my points and ultimately found a doctor willing to treat the kidney disease.  Unfortunately, even though the oral chemotherapy he was prescribed lessened the severity of Terry's kidney damage, he still suffered from serious symptoms that, after continued trips back and forth to the ER and lengthy hospital stays all through 2008 and into September 2009 (a week and a half before our youngest daughter's wedding), he suffered another PE and a rectus sheath hematoma that nearly took his life.  It was then, while lying in ICU just before what was to be one of the sweetest moments in our young daughter's life . . . they sent in a doctor we should have had access to years earlier . . . who said he believed Terry had been suffering from Hepatitis C all this time, which caused the kidney disease.  I was furious.  First of all, where was this doctor when we were begging for help, not to mention what he told me he was confident in testing him with a test that went beyond the inadequate testing they had run and said he did not have hepatitis?  The test this doctor was going to run was a bit more expensive and one they normally do not utilize as they felt the simple screening test they had done earlier was sufficient.  

It was at that moment that I realized no one should ever assume the medical profession, the health insurance companies focused on reserving optimum care for those fortunate enough to pay for it, are offering you the best options.  It is my belief, after seeing the worst of the worst in both of those fields, first-hand, a person HAS to . . . simply HAS to become both patient and advocate even when you feel sick, exhausted, demeaned and patronized.  You have to walk the fine line between being composed and overwrought with emotion.

It all hardened me.  It forever changed me in ways I can't even begin to articulate.  The pain and suffering my husband went through for years, and the torture of watching it all . . . feeling so helpless and degraded by a system more interested in making and saving money than providing the care people deserve many times was one of the darkest, most frightening times we endured.  

Then, 8 years later (after he finished the Hep C treatment, now thought to have caused this, this lymphoma) . . . we are fighting once again.  This time, however, we feel we have the experience, the courage and the determination to fight for ourselves and our family with a sense of confidence we lost to the negligence we witnessed 12 years ago.  I have lived through the blank stares and judgmental attitudes of some of my co-workers and supervisors, some of whom are still there today . . . having to paint that "I'm doing okay" smile on my face they came to expect so THEY could feel better when they asked how we were doing.  I can forgive people but I will never be able to forget their heartless, shallow demands that my job was to think "positive" and "trust" what I was being told and to "accept" things.  I find that ridiculous and cruel.  I acknowledge what has happened to us and our family.  I "ACKNOWLEDGE" this latest challenge as well; but there is NO way I will ever "accept" it.  I reject it with every fiber in my body and soul.  It comes from somewhere dark and UNacceptable.  

For us . . . as with our past unfortunate circumstances, we are trying to focus on the reality of what is happening to US, yes US.  We both have our positions in hell again with all of it; but this time around . . . we are trusting the strength of our marriage, the knowledge we gained the last time that WE are our best advocates and we MUST allow ourselves to cry those tears when we feel them swelling and decide, together, our next course of action.  Living in hell, in separate corners there . . . only isolates each of us and we are of no use to each other thinking one of us should suffer this or that in private.  

Reaching out to each other, and to people like all of you, trying to find ways to help ease the burden and expressing our innermost fears with others who have or are living with some of the same challenges is invaluable. 

I apologize for the length of this post; but I hope it is a story that may inspire and embolden others in their journey through ill health.  I, too, have a story worth sharing about my own brush with cancer that, again, with the strength and courage I found when fighting for my husband . . . may inspire as well.  But, due to the length of this comment . . . I shall save it for another day.

In the meanwhile . . . I value and appreciate each and every comment and any interest anyone has had in this our story.  Thank you!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3083
Joined: May 2012

Afraid,

You dissertation was so beautifully written that I just felt compelled to compliment it.  I graded college papers for so many years -- the ability to write is just so rare today, and diminishing annually, mostly due to the internet and the digital world.  The English philosopher Sor Francis Bacon once wrote that writing maketh an exact man.  Today, thinking is sloppy, if it occurs at all.  Soon, people will just be able to grunt and point at things; emojis are a definite move toward this.

I was ejected from a car decades ago, which then rolled over me. Crushed, in ICU a month, then acute care, then a year relearning to walk.  My doctors said I would have organic brain damage from oxygen starvation, and in fact I could not speak in sentences for several months after coming off of the ventillator. I was not yet married, but my mom did for me in essence what you did for yor husband.

Two decades later, advanced HL, and my six months of R-ABVD was not pleasant, worse than average range of side-effects, including permanent lung damage.  Significant neuropathy still, eight years later.  Then, Stage II prostate cancer.   My wife of 27 years now got me through all of it; without her, I would today be dead.

I went on to take degrees and academic achievments, awards. Not toward money, since I've never made any. But rather to show that if the brain damage occured, it was a mountain to be climbed, not a pit to lie in .

Bless your story and your deeds,

max

Anonymous user (not verified)

Thank you, my friend.  Your story, also, inspires beyond measure.  Your story, so filled with courage, endurance and love is one meant to share with others who may feel hope is lost through their own challenges.  My mother always told me to follow my heart.  Although she passed years ago, her strength and sweet nature is one of my inspirations to always listen to what you know is the direction to take, even though it may not be the easiest choice to make.

I wish you nothing but continued good health and peace.  And, I look forward to more exchanges with you to learn from your courage and determination.  

illead's picture
illead
Posts: 815
Joined: Aug 2012

 Your story is beyond imagination, please know that you are welcome here and that we are very supportIive of you and your dear husband and all you have been through.  Please stay with us and keep us informed, we are very concerned and hoping for the best.

Keep fighting,

Becky

Anonymous user (not verified)

Thank you for your interest, illead!  I will be sure to share as we travel this uncertain journey.  When able, I would be most interested in learning more about yours and how you managed it all.  Your support is of great comfort.

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