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SCT or Rituximab after remission

Lymphomaanother...
Posts: 2
Joined: Jul 2016

I, 61 years old, was diagnosed with stage IV MCL in November 2015. I have finished six treatments of Bendamustine and Rituximab. An extra three CT scans occured during the last seven months due to bilateral pneumonia and abdominal pain. The last CT scan two months ago showed the enlarged lymph nodes in my digestive tract were gone. The was a few "shadows" in my left lung which may be pneumonia scar tissue or a few remaining enlarged lymph nodes. The follow up CT/PET scan is next week and the oncologist is positive I am in remission.

The oncologist is recommending maintenance Rituximab for two years. An early second opinion recommended CHOP and stem cell transplant. I have also seen a SCT physician which is standing by if I choose this course of treatment. My oncologist mentioned that there could still be some "microscopic cancer cells left". My personality and work history (Naval avaitor and airline captain)demonstrate a belief in taking a challenge head on no matter how difficult. I am leaning towards the SCT to rid my body of as much of the lymphoma as possible and not hope the Rituximab keeps it in check.

I hope there are others who have faced this dilemna and can provide insite into their decision and the outcome.

 

Thank you,

Tom

 

Mary from NJ's picture
Mary from NJ
Posts: 60
Joined: Apr 2016

Hi Tom - If your insurance permits and if you have access to oncology groups affiliated with large teaching/research institutions, my suggestion is to seek additional opinions.  The first 2 treatment recommendations I received were completely opposite treatments (one radiation only and one RCHOP only), so I went to both Johns Hopkins in Baltimore and Univ of Penn in Philadelphia.  The lymphoma teams from both institutions reviewed my case, and both teams recommended the same exact treatment.  This made me feel very comfortable with moving forward.  By talking to others during my infusions the past few months, Rituximab for maintenance seems to be a successful treatment.  Every patient is different with how they react/respond to the various treatments. Good luck with whichever treatment option you choose!  -Mary

po18guy's picture
po18guy
Posts: 1194
Joined: Nov 2011

That is the dilemma we face. We have no way of knowing, with assurance, which decision to make. When we make a decision, it normally eliminates all other decisions. And, having made our decision, we cannot know if that decision was the best one. I would advise you to obrtain a second or even third opinion from a National Cancer Institute Designated Cancer Center. They are cutting edge and have the best and brightest working for them, yet not all centers agree on the best action or therapies. As a pilot, you are in a risk group, simply because you spend more time at altitude, with a higher exposure to solar radiation. However, as a pilot, you may also visit cities where the NCI designated centers are located.

A transplant can have as much as a 30% mortality rate - considerable. A transplant of any type essentially kills you by killing (or greatlky weakening) your immune system, making you susceptible to any opportunistic infection. It is done with the hope that the infused stem cells will engraft and begin producing healthy blood. An allogeneic transplant is essentially an accelerated aging program. It holds the promise, the intent of eliminating the cancer - but at the cost of various co-morbidities - some of which are not at all pleasant. A very tough decision for anyone to make - and for this reason, more professional opinions are advisable. While pondering maintentnace vesus transplant, we must bear in mind that maintenance may fail at some point, and that transplant doctors and centers are seeking, at some level, to amass statistics.

Knowledge is power, but its sources are limited.

Lymphomaanother...
Posts: 2
Joined: Jul 2016

Thank you for your comments.

I previously lived in Ann Arbor, Michigan and our long term family physician was a University of Michigan Medical School professor. I immediately called her after I received the diagnosis and she fast tracked an appointment with the Lymphoma Clinic at the medical school. The CHOP + SCT came from an oncologist who "is not a SCT physician". I now have appointments with both my oncologist and the SCT physician in the next ten days and will also have the results of my CT/PET scan when I meet with them.   

illead's picture
illead
Posts: 874
Joined: Aug 2012

Hi Tom,

My husband has MCL and had relapsed.  He was also on Benda/Rit and relapsed after his 2 yr maint on Rit.  He is now on  Ibrutinib which put him back into remission which he remains in since April/'13.  We opted against an SCT after his first remission at the advise of an MCL researcher in the states and 2 oncologists in Germany.  Even though he relapsed, we don't believe we made a wrong decision about the SCT.  Like the others have said, there are differing opinions and some other opinions would probably be beneficial.  Dr Michael Wang at MD Anderson is a top researcher for MCL and they are one of the top MCL hospitals and research centers in the nation.  He headed up the research on Ibrutinib and is conducting several trials at this time.  One of our posters Joe Costello has just completed a trial and Dr Wang told him he had just completed one of the most important trials in history.  He also told another of his MCL patients that he believes they will have a cure in 10 years.  He is passionate about MCL and there are many more who are experts with MCL.  You really should find one who specializes in MCL as there are many more options available than may be known by other good oncologists.  It is your choice though and I wish you well whatever the decision is.  There is no right or wrong answer.

My best,

Becky

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3666
Joined: May 2012

Tom,

Welcome here from a submarine (fast attack) guy. Mostly under-ice ops.  I received my Dolphins standing on the ice at the geographic North Pole.  As you are an airline pilot, I will mention that my late father was FAA, in a 32 year career: 9 years Air Force, 23 civilian.

I have never had MCL, and have never to date needed a SCT, but in studying the issue of SCT in general over the last few years, I am of the opinion that if I am ever presented with the necessity of SCT or some other therapy,  I will go with the "some other" option.

As Po mentioned, death during SCT tends toward almost a third, a stunning number.  As everyone has also mentioned, seeking out an up-to-date MC oncologist is a game-changer.  Vast advances have been made in MCL in the last ten years, which I mostly learned following Bill and Becky's story.

Not an easy decision I'm sure. I would seek out an MCL guy and avoid transplantation if possible; a decision I have made in advance.  I get a sense that SC transplantation has become somethng of a default, or automatic choice for many doctors, who do not bother to keep current with newer, less risky alternatives.  This is just an impression I have, not something I have documentation on.  Like everyone here, my opinion is a layman's opinion.

max

lindary's picture
lindary
Posts: 709
Joined: Mar 2015

I was schduled to do SCT last Nov but it had to be postponed for a medical reason. Tried again in March after the Feb PET/CT scans showed my FNHL was still in remission. I "failed" at the stem collection in that they collected less than minimum in 2 days and my platelets kept dropping.  Then in May another set of scans showing NED. Last week I met with the SCT dr (at Rush Hospital in Chgo) who has decided that it would be best to not pursue the SCT. She said she was all for it earlier but giving how well I am doing right now and that SCT does have it's risks she doesn't want to pursue it now. Plus there are new targeted drugs being researched and tested. She believes it is likely that if my cancer were to come back there would be other drugs to use to put it back into remission.  In the meantime I have been getting Rituxan every 8 weeks since last Nov. 

I know that the Drs have meds to fight the side-effects of SCT but as has been pointed out there are sitll major risks. For me I am actually glad we aren't doing SCT. Originally I was all set but the longer it got delayed the more I was getting worried about doing it. For me I pryaed, a lot. My blood counts go up & downbut never get up over the low end of normal. At least not yet. I keep being told it takes time for my bone marrow to recover from all of the chemo I received (R-CHOP & RICE) but I will celebrate once one of them gets into the normal range. 

 

 

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