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2016 Any + Mantel Cell Survival Stories to share.

Jennifer R
Posts: 3
Joined: Apr 2016

I am newly Dx with MCL 2.2016, 52 yo Female.  Getting treatment with R-CHOP and R-DHAP everyother cycle for a total of 6 rounds of chemo, I have completed 4 cycles thus far. I plan on geting a stem cell transplant this summer.  I am trying to make some life deceisions based on progression free survial rates.  It looks like the longest anyone has lived post diagnosis is around 10 yrs.  I am wondering if there are other stories I may me missing?  A lot of the threads are old and go back to 2009 & I am finding it challanging to weed through to more current information.  I would appreciate hearing your story.   Thank you, Jennifer 

hopeful lady
Posts: 36
Joined: Apr 2016

I know we all have different strains of lymphoma so I was not familiar with yours.... I did look it up at http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=6300157&gclid=COKozKy_9cwCFYkkgQodCzUDKQ

My disease if a non-Hodgkins Lymphoma called Waldenstrom's Macroglobulinemia..... they use some of the same drugs for chemo.  I am 60 years old.  What i have learned is that progressive free survival rates as we see them today are not accurate or up to date.  They are a compilation of years past and the meds used then which were probably even older drugs.  Today, we are hopeful for longer remissions and I personally find the progression free survival rates to weigh me down and make me less hopeful so I consider that my disease is on its own course and it will progress as it does and remit as it will and I will be hopeful and stay positive that my body will be kind to itself and that my life will be whatever I choose to do during my good times.  I wish you well as you will read so much info that it will make you have to take a breaK! 

The peope on this site are wonderful and experienced.... they will let you know how it truly is. 

when do you start your R-CHOP?  Many non-Hodgkins Lymphoma patients  take that combo.  I am on Rituxin/Cytoxin/Steroid combo.  Just finished second round. 

You are young!  Let us know your story and keep us posted.  I love reading about the journey (good and bad) because we need to share that!

My very best to you as you start chemo and just know we are all coming from a place of understanding and love and concern. Ask any questions, vent when you want to!  I love this forum for everything it has to offer.  Thankful to have found it and so grateful to make your acquaintence.

Dianne

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3492
Joined: May 2012

Welcome, Jennifer.

MCL is one of the less common strains. It is fairly rare among women, and usually occurs to men over 60.

Our unofficial, resident expert is Becky, screen name illead. She has been doing the research for her husband Bill's treatments for MCL for several years now.  She will very likely log in soon and reply, or you can use the e-mail feature to contact her.

max

Anonymous user (not verified)

i don't know much about MCL but I do know a lot about statistics. They can be made to say whatever you want, good or bad. While you can't ignore stats completely please don't use them to plan for your own demise. Accept that we ALL die whether we have MCL or not and let MCL be just one factor in how you live your life. When my Mom was terminal (not from cancer) someone said something to the effect " sorry you are dying". Her reply was "we are all dying, some of us just don't know it yet". I am more private than many on here but I know of what I speak on this topic. Its impossible to ignore chemo treatments (I know that too) but when they are over try to put it in perspective as just another chapter in your life. I dislike false hope, preferring realism. However in our situations, treatment breakthroughs are constantly occurring. MCL treatments in particular are very rapidly improving, so there is very realistic hope for a cure. As a younger female with MCL, you may be a prime candidate for participating in some cutting edge trials. Look into that. However, if our cancers are cured, something else will eventually get us. Its true for everyone alive and always has been the human condition. All my best. Stay calm, return fire.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3492
Joined: May 2012

Jennifer,

All manner of issues relating to cancer and health are discussed here: It is easy (and fairly common) to get fixated only on the "Clinical" or medical issues involved with a dangerous disease, but the cancer experience involves much more.  It involves the big picture of life, sickness, and ultimately death.  GKH is so correct:  statistics regarding cancer survival are always at least a few years obsolete. And everyone is moving daily toward "the end." It is a matter of how we live each of those days, as much as how savvy we are regarding drugs, tests, etc.

I use another Board, having had a second cancer (unrelated to lymphoma). There is a man there over 80, Stage 4 many years with metastatic disease, bone tumors. His cancer markers (test results) for the disease are astronomical.  But he has no pain, has lived at least a decade past what any doctor would have predicted, is amazingly fit, and much more active than I am at my current age of 60.  All of his written concerns are of a spiritual nature, very highly advanced.

In 1986, after being run over by a car, a pulmonologist walked out from my ICU room and told my family I had, "30 to 45  minutes to live."   When I did not die that night, every day for about a week they said, "He should NOT LIVE. It is doubtful that he will live. But if he lives, he should have serious organic brain damage."

Do not let numbers dictate your cancer experience to you.

max

illead's picture
illead
Posts: 860
Joined: Aug 2012

 Sorry I am late in answering this. As Max stated my husband is the one with MCL, he was diagnosed July 2011, he relapsed and is now on the target drug Ibrutinib. You can read our story by clicking on our picture. As GKH said and it is true they are making great strides in their research with MCL and it is not near as scary as what you have probably been reading on the internet. I agree that you should check out clinical trials and other opinions as there is a lot going on with mantle cell. I don't know where you are and of course how available you are to travel but MD Anderson in Houston is one of the top  research centers for MCL and Dr. Michael Wang is a top researcher for MCL there. One of our members, Joe Costello is close to finishing his trial for MCL and he and others have nothing but very high regard for Dr. Wang and his passion for finding a cure. Please believe that there is a lot of help out there for MCL patients and my husband and I are able to keep his disease on the back burner and go on with our lives. As was also said you are very young and being female may be something the researchers would be very interested in. There are also many other very excellent doctors and institutions who are quite dedicated to MCL research Dr. Andre Goy I think in New Jersey, Weill Cornell Institute, Dr. Brad Kahl University of Wisconsin to name a few. Also there is very good information on the Lymphoma Research Foundation website (lrf), ACOR has a whole section for mantle cell but it's a little bit difficult to maneuver around. So Jennifer I hope that this has helped a little and I have been able to calm your fears somewhat. Please feel free to ask any questions that you still have and you can always private message me. We are all here for you.

Keep up the fight, I will be thinking of you,

Becky

 

 

 

Jennifer R
Posts: 3
Joined: Apr 2016

Thank you all for taking the time to write! I appreciate every response.  I know to not get to fixated on information and studies and statistics, however, I am an RN by training and love science. ( Different area of practice, I am learning a lot about a topic I was not interested in.)  I am also a pragmatist, and don't know any other way to be, it is how my brain works.  Everyone hopes they die from somthing other than their cancer diagnosis....preferably old age.  I went to a Lymphoma Research talk last night that was interesting.  Pharamaceutical companies are making huge strides with cancer treatments with monoclonical anitbodies etc.  Most of the money is going into solid tumor cancers like prostate and breast just because there are so many more patients with those diseases.  The good news for those solid tumor cancers is that they are likely to be completely curable in the next decade or two.  There is less money flowing our direction & definately going towards most common Lymphomas like DLBCL.  

I just finished my last R-CHOP today and compared to the R-DHAP it is much easier to tolerate.  I also think the Prednisone helps with that, until I crash on day 8 post treatment.  I live in Oregon and plan on my stem cell transplant at OHSU Medical Center.  I have read a lot from Dr. Wang @ MDA & some European studies as well.  The interenet is amazing as there is just published information a click away.   I am commited to the course I am on (Nordic regime) and hope for a long term remission. I am trying to learn to live day by day, and I've decided that this is one of my life lessons I need to embrace, but find myself clinging with both fists to goals and plans etc.  I just need to let go and live in the moment, but just have not learned how to do that well.  One interesting thing that came from the LRF dinner last night was getting adequate Vit D.  It was recommended to take a supplement if you live in a state like mine.  I had not heard that before.  The other life style information was common sense that all of know, but don't always put into practice.  

I wish you all good days ahead and again thank you for writing back.

Jennifer

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3492
Joined: May 2012

Jennifer,

As an RN, your learning curve will be miles ahead of most newcomer here.  You mentioned that you do not practice in oncology, but you will see that oncology nurses are special, but it seems the burnout rate is fairly high. During my chemo months, my N.P. quit oncology, and entered a different specialization.  It is fairly obvious why: the mortality rate among the patients is among the highest. It takes special gifts to be an oncology RN or Oncologist.

You menitoned that you anticipate SCT.  One of the more advanced discussions here regarding MCL is whether SCT is actually always a good idea, given that some European groups think that less radical, new chemo drugs may work as well.  It is not a subject I know much about, but Becky has reseached this in depth and spoken to various German authorities. Her own husband Bill declined SCT, and has done very well since.

Obviously there are cases where only SCT will work. I suppose it would take significant research to know which cases are which.  I am just sharing my recollection of this discussion, since I would guess it is quite relevant to you as you move forward.  I have never relapsed with lymphoma, but my feeling is that I would use all reasonable treatments short of SCT before taking that step, if alternatives existed.

max

john1947
Posts: 14
Joined: Nov 2015

I too have declined a SCT.  Finished 6 rounds of r chop with a complete response, bone marrow biopsy, Pet Scan and Colonoscopy and Endoscope were all clear of cancer cell.  I had stage 4 MCL.  I will continue with Rituxin therapy for 2 years and if a relapse should happen I will start Ibrutinib therapy.  A SCT is not a guarantee  and if it fails your options narrow.  I based my decision on the complete response, if that had been different I would have considered the transplant as an option. 

po18guy
Posts: 1083
Joined: Nov 2011

I had a 50% chance of surviving from May 2008 to May, 2010. I had a 30% chance of living until January 2011. That all dropped with my first relapse, then dropped much further with my second relapse and resultant mutation. I had a 30% chance of dying as a result of the stem cell transplant. After all of this, my chance of being alive is what, 0.01%? I know that you are in medicine, but everything - everything - on the web is outdated. And, you certainly know that statistics apply only to populations and not to individuals. We form our own survival curves here, as each of the above posters has affirmed.

Before diagnosis, did you have life insurance? Thaink about why. Certainly because life is unpredictable. So is cancer survivorship. Yet, as life progresses and the aging process takes its toll, medical science also progresses. Think about those thousands with Chronic Lymphocytic Leukemia that had a relatively predictable life span - then Gleevec arrived and blew it all out of the water. That is the world we live in, and things such as these provide our hope.

Parting thought: Worry cannot change the past, nor can it predict the future. It can only paralyze the present - and that is all we possess. Lives that are derailed by some future possibility are not open to the grace of the present moment.   

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