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Mantle Cell Lymphoma Survivor – and you can be one, too

If you searched on Google for information regarding cancer, specifically mantle cell lymphoma, please read this article.  

In April 2008, I was diagnosed with mantle cell lymphoma. This was a complete surprise as I was a conscientious woman concerning my health and I exercised regularly. I never thought I would be a candidate for cancer! (read my complete story – here)

I went to the internet to learn more about this cancer but what I read concerning mantle cell lymphoma was bleak.  The reports were dismal as far as the odds of beating this disease.  I want you to know that if you went to the internet to learn more about MCL, don’t be discouraged or frightened, the news is actually more hopeful than those articles.

I started chemotherapy May 5, 2008.  I felt like I was on the fast track and all I could say to my oncologist was “Yes” to anything and everything she suggested.  What did I know about this cancer called lymphoma?  So my chemotherapy journey began in May and ended in September.  After a six week “rest” of numerous appointments and tests, in November I was admitted into the hospital for my autologous stem cell transplant.  At my 100 day post transplant, February 2009, my bone marrow transplant doctor told me the good news that I was cancer free.  And he felt confident enough to say “forever.”

I chose to go to a research hospital for my treatment.  I went to Huntsman Cancer Hospital in Salt Lake City, Utah.  My oncologist, Dr. Martha Glenn, was a specialist in blood cancers, hematology.  My personal opinion is mantle cell needs a specialist’s diagnose and treatment.  They are up to date with the ongoing MCL research and generally will prescribe a protocol modeled after one of the top research hospitals.

My treatment was researched and developed by MD Anderson, Texas.  I had six cycles of AB rituximab hyper-CVAD, a very aggressive chemotherapy regime.  I did well, as expected.  I don’t know if any chemotherapy goes as planned, I think most every patient has glitches along the way, some minor and some not so minor.  As each cycle went by, I felt weaker and weaker.  I actually got a little frustrated with my lack of energy and ability to accomplish anything.  

In preparation for my transplant, a PET/CT scan revealed I was not 100% responsive to my chemotherapy.  After a board of oncologists discussed my case, it was decided that BEXXAR, a radioimmunotherapy, would be prescribed followed by 17 rounds of radiation once I was released to go home after my transplant.

This month, March 2013, I had my nearly five year since diagnose appointment with my oncologist.  At this point, my only test is a full blood panel.  Dr. Glenn said as each year goes by post treatment, the less chance I have of my cancer returning.  As a matter of fact, during my first year appointments she would tell me in her five years of using my type of treatment protocol, it has not failed but for one patient.  As time has passed, she told me again at this appointment, now in ten years of prescribing R hyper-CVAD her record stands, only one patient relapsed.

Dr. Glenn was so pleased with me and my test results that she believes I am cured.  That word “cured” is not used very often in the MCL world and is debated among the oncologists but with Dr. Glenn’s optimism, I will believe I am cured.

Mantle cell lymphoma is not a cancer to fool around with.  In my years as a survivor I have kept up to date with the research and data surrounding MCL.  We have some highly intelligent MCL doctors that are unrelenting in their research looking for the cure to our cancer.  In the five years since my diagnose, research has discovered new drugs that are less toxic and easier on the body.  Many of these drugs are in clinical trial.  The doctors seem to think in the near future years MCL can be cured.  In my reading, MCL is a maintainable disease and some oncologists have even called it a chronic disease.

In being cautious, all of us will not have my type of treatment.  The oncologist must consider age and health factor at diagnose.  With this in consideration, they will prescribe the chemotherapy treatment most effective and least life threatening to the patient.  I met a man who was about my age diagnosed with MCL.  He was a smoker and his tests revealed he couldn’t handle my specific treatment, it had to be modified for his situation.

Also in my reading, not all doctors prescribe the same treatment regime; there are chemotherapy options available and one doctor may favor one over another.  To me this is very interesting.  

On my right side bar of this blog, I have a link to another mantle cell lymphoma blog, My Adventures With Mantle Cell Lymphoma.  Click here to read Rich Franco’s blog.  He, too, was diagnosed in 2008 and volunteered to participate in a Phase I clinical trial with Dr. Goy from John Theurer Cancer Center, Hackensack, NJ.  I asked Rich the following question about his treatment and the following is his response.

“Question 1. It appears you volunteered for clinical trial for initial treatment. Is it wrong to say the trial combination chemo didn’t work?

Answer 1. I did participate in a trial the first time as well. It was: Phase I study bortezomib (VELCADE) plus rituximab-hyperCVAD alternating with bortezomib plus rituximab-high dose methotrexate/cytarabine in patients with untreated aggressive mantle cell lymphoma.

In all honesty I never had the expectation that this would be a cure. As a matter of fact Dr. Goy was very clear with me that it wasn’t. His goal was to get me in remission for an extended period of time and when my MCL did come back there would be such great medical advancements made that I would be a breeze to treat. I had been in remission for over 4 years and it does appear that Dr. Goy’s prediction of medical advances seems very promising. Would it have been better to be in remission for 10 years versus 4? Of course! But it is what it is and I am ready to do whatever I need to do.”  (highlight is mine)

So for your research in finding any positive information regarding mantle cell lymphoma I hope this article has helped you in some way.

Again, we may be prescribed different treatment regimes and we may respond just as differently to our personalized chemotherapy but there is a point to be made – MCL is not a hopeless cancer.  As my doctor said to me, “You had the kitchen sink thrown at you and because of that, you are cured.” 

With a little research on the internet you can find the names of the nationally and world renowned doctors treating mantle cell lymphoma.  Many of these doctors are associated with research hospitals and are working on finding the cure for our cancer.

I recommend the following online services and forums for more information and other patient/survivor stories, discussions and questions.  I particularly like the ACOR.  ACOR is a forum for MCL patient/survivors and caregivers in various stages of our disease.  This group is highly informative and discuss the latest clinical trials and new drugs available. 

ACOR, Association of Cancer Online Resources –  http://acor.org

Leukemia and Lymphoma Society  –   http://www.lls.org/

Lymphomation  –  http://www.lymphomation.org

Lymphoma Research Foundation  –  http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=6296735

 

Mantle cell lymphoma, five year mark and I am living life

I am living life!

I am learning to let go of things in my life that I have absolutely no control over. I was given the permission to not have to fix everybody. I am allowing myself to feel emotion, all of that emotion I pushed down believing it was the right thing to do because I am a Christian. I am finding out about me and who I am and what I need and what I want. And somehow shouldn’t my cancer fit into this process? Do I just shut the door on it and say “good-bye” (and good riddance)? Or do I welcome it to come forward and incorporate itself into my present self-exploration?

I continue to read with interest an online mantle cell lymphoma forum. This forum is probably my only contact with the at large cancer world. I continue to write on this blog and over a year’s time I have made some wonderful blogging contacts who are inspiring as they face cancer either as a caretaker or patient. And three of my fellow cancer sojourners lost their battle with cancer.

I continue to facilitate a small Christian cancer support group. Many folks say this is a good service. I attend the local hospital’s women’s cancer support group and this group has gone through a lot this past year in losing two members and another one nearing the end of her life. And with our loss comes members who have relapsed and are in treatment again.

I could stop doing all of this and move on with my life. But if I withdrew from the cancer world whether through the net or locally or both, would I miss it? Would I be missed? As I am in this self-exploration and personal development of my hopes and goals for my future (now that I am pretty confident I have many years ahead of me) how does it all fit together? Should it all fit together?

I know some personalities naturally don’t think about or even spend time analyzing events of their past, others are, well, like me. I suppose the “easiest” way to analyze this is to not analyze at it at all but live forward. So if I take that advice in living forward then I think I would be doing exactly what I am doing.

I don’t want to live selfishly for myself (egocentric) but I want to live outwardly from within and give what I can to others; like I wrote, I don’t have to “fix” others, the key is simply being there for others.

When I think of fixing others, only Jesus Christ can do that. I don’t have those miraculous insights into people’s souls and neither can I heal people’s hurts, only Jesus Christ can do that. I think my only obligation is to listen, to hug and to compassionately assure those who God places in my life. I can not see myself NOT doing this.

So here I sit this morning thanking God for what He has given me, life.  I have changed from a self-centered person who felt “safest” in an environment I controlled (or so I thought), I am more empathetic (isn’t that what cancer does, helps us to empathize with others going through difficult times?) and I want to live life fully (there is a lot to live for and do both for others and myself).  I am thankful I can imagine and plan months and years out from today.

When you hear that cancer doesn’t define you, how does that make you feel?  I can’t help believe that hearing the words, “You have cancer”, is like a sharp knife piercing every aspect of a person’s being; physically, mentally, emotionally and spiritually.  I don’t care what kind of cancer you are diagnosed with, I feel pretty safe to say everyone questions their mortality and wonders if cancer will lead to their death.

Cancer does leave a scar on our soul; the size of the scar is different for all of us but it is still a scar.  Cancer is part of our definition because somehow and in some way you responded to it and it changes you; yes, you remain you but there is a newer definition of you.

I am nearing my five year mark.  I look back on this journey and I am  thankful for every high and  low I experienced.  I was strong and focused all through treatment; I was fragmented and lost, lonely and isolated in my first years of survival.  Today I am impassioned to come alongside you as you face your battle.  I sincerely want to be your example of “you can do this and there is life beyond cancer.”  How can I do this for you?

Living the rest of my life.  Glacier National Park, Montana

I had cancer.  I survived cancer.  I am living life.

A new love – hiking in God’s creative wonder.  Would you like to join me?