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

 

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11 comments on “Mantle Cell Lymphoma Survivor – and you can be one, too

  1. Rosalie says:

    Cyndi, I am happy to find your forum. Right now all positive information and attitudes are greatly appreciated. My husband has just been told that his MCL has returned. He has been free of this cancer for 16 years. He will be seen at Memorial Sloan Kettering on 8/24. But, we live in Florida and cannot continually go back up to NY. Does anyone know a MCL guru in Florida. We live on the west coast of FL and have access to all cities from Ft. Myers to Tampa. Any information anyone can provide will be appreciated. Would appreciate the name of a knowledgeable doctor. Rosalie

  2. jimbo108 says:

    My MCL history:
    Diagnosed in June 2011 with leukemic phase (blood, marrow, spleen but not lymph nodes), stage 4 MCL. Entered a clinical trial in Oct 2012 with Bendamustine/Rituxan chemotherapy followed by Auto SCT. It is almost 1 year since SCT and I remain in complete remission. My only hematological abnormality is chronically low platelets (80-100) and this is not serious.

    I am a rabid internet researcher and I can attest that anything over two or three years old is ancient history with this disease. The latest results are amazingly different in outlook from three years ago and, yes, I don’t think I am ‘cured’, but I’ve been given time for the cure to be found – That’s plenty enough for me, all things considered.

    My second opinion was with Dr. Goy and he saved me from advice that my first heme doc gave me. I chose the trial by Dr. Steven Bernstein at Rochester. It compared R-Hyper CVAD with the Bendamustine/Rituxan (B/R), immediately followed by Auto-SCT. I was randomized to the B/R side and I’m fortunate that I was. The R-HyperCVAD side was cancelled because too few of the patients were able to have enough stem cells harvested for transplant. I had a granulocute crash after the first round, so Bendamustine was reduced to 70% – I still got full remission and success with the Auto SCT. Fingers crossed and much hope for the future!

    • Cyndi Heath says:

      Thank you for writing! I think any MCL story is amazing.

      Dr. Goy is one of the best there is to have! I would trust him with his treatment protocol. He and other world renowned oncologists have differing opinions and methodologies in treating patients but regardless, to have the care from one of the best there is brings the hope and assurance the patient needs in fighting this dreadful disease.

      May you live a long and joyful life!

    • Cyndi Heath says:

      Jimbo,

      We have some amazing doctors who are treating MCL! Your story is as hopeful as ever and I agree, if we can be put into remission, the cure may be around the corner!

      Your best years are now! Enjoy yourself!

  3. Ricky says:

    I lost my dad from this crazy fast attacking cancer. He found out he had it Sept,2012 and lost him in Ag 2013. He was a smoker for years but had quit a few months prior finding out he had this going on. Crazy part is, our family is cancer free. The doctor asks him if he was ever in the military and the answer was no. They are trying to see what is the caused of this. But I asked the doctor about if it has something to do with chemicals because he asked that, he said more than likely? He was a concrete worker his whole life so it had me thinking. Anyways Awesome job on the secuess as I am having a hard time typing because He was my best friend for 29 years and never thought his life would have ended in this way. He was only 57. We never left each others side and it kills me everyday to think my pops is gone.

    Sorry I am glad I found a secuess patient and keep others in HIGH hopes!!!! Anyone that has it, good luck and wish the best in anyway possible.

  4. You truly are a voice of hope, and I can imagine what hope this article of experience brings to those who need it.

  5. Edie says:

    Oh I feel so useless. I research constantly. They say there is no cure but you seem to think there is. Is a long remission the best to hope for or will it relapse ? Or is there simply no answer to my question? I want to understand, to not be blind sighted, to be smart.

    • Cyndi Heath says:

      Edie – Do you have MCL? If you want, contact me through Your Voice , a tab at the top of my blog – it is an email that will come directly to me. I would love to dialogue with you.
      Cyndi

  6. Andrew says:

    Cyndi,

    A good post and helpful to have this up (you were too kind in describing info on MCL as bleak – depressing and brutal would be the terms I would us).

    My experience has been more challenging than your’s and Rich’s. R Hyper CVAD plus auto SCT gave me only about a year (I was the 1 in 5 patients that don’t make it past the 5 year mark). Now, am 18 months post my allo SCT.

    I would not use the word cure in my case – too early to tell, and don’t want to tempt fate. But it is as Rich says, kick the ball down the road, enjoy the extra life given to you, and hope that the researchers come up with another treatment – and repeat (if appropriate).

    I tend to focus more on living in the now; the future is uncertain, the present I can enjoy.

    • Cyndi Heath says:

      Andrew,
      I follow you, too, and saw that you came out of CR. I wanted to write cautiously informing that not all of us respond the same way but that some stories are positive.

      I get the feeling those who participate in online forums, FB, etc. seem to experience more set backs and are active in a group comparing new drug therapies for relapsed disease. I find them informative but at times I wish the long timers who have remained CF would share too, the newbies could sure hear some good news – it is so hopeful for all of us!

      When I first read about MCL in 2008 I thought I was going to probably die. I am so grateful for the continuing research and hope that we have.

      What was you initial treatment? And were you able to complete all of it? The one patient I wrote about that came out of CR on my treatment protocol was an older man (healthy though) and was unable to complete all the cycles. He was treated with Velcade + something else and a mini allo for his second round. I was able to complete all the cycles + BEXXAR + ASCT + radiation. I will never know if all of that combined did the trick or as the saying goes, “God isn’t finished with me yet!”

      I am going to go back in your archives to read more of your story!

      Thanks Andrew and happy spring – Cyndi

      • Andrew says:

        Thanks Cyndi, I think your point about the forums being dominated by those experiencing set backs or ongoing issues. One of the things that attracted me to your blog in the first place was that you were an example that the prognosis need not be so bleak.

        As for my treatment, it was R Hyper CVAD plus BEAM conditioning for my auto transplant. No radiation required as the CT scan showed my tumors were gone. My relapse started with headaches and vision blurring, signs that my lymphoma had progressed to my central nervous system (my CT scans were still clear). Salvage chemo to stabilize then full myeloblative conditioning regime. Made it through all the cycles, and so far so good.

        Best wishes for Easter and spring. Andrew

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