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Indolent MCL Diagnosed in June 2018 / Clinical Study 2 Months Later

Cisco2018
Posts: 1
Joined: Dec 2018

Hello Everyone,

Just wanted to share my story here.  I am a 59 year old male and was diagnosed with Mantle Cell Lymphoma in June, 2018.  I went in for my second routine colonoscopy after the required 10 years for preventive medical care and they found many polyps in my large intestine in the area where it connects with the small intestine (the ileum) and they told me that they could not remove them all because of the high number of polyps found so they will run the biopsy to check for cancer and go from there.  The biopsy came in positive for Mantle Cell Lymphoma and this is where my journey with this new disease started.  I was very sad and cried after the doctor told me I had cancer and right away I thought that I would have just a few years to live because I knew nothing about the disease at that point, so many thoughts go through your mind and you think the worst outcome, the first question that came to my mind was, How far has it extended through my body and immediately thought about chemotherapy because of the area where it was found.  I was referred to the Oncologist and had to go through all the routine tests such as CT and PET scans, Bone Marrow Biopsy and blood analysis, I was happy and relieved that my bone marrow biopsy came in negative and the disease was only found in the area of the intestines and has not spread over any other areas. My final diagnosis was Asymptomatic Indolent Mantle Cell Lymphoma because the growth rate is about 30 % and I have no symptoms at all, if it wasn't for the routine colonoscopy I would never had found out about it by now.

My Oncologist was thinking at this time that the most successful method to fight the disease was through chemotherapy combined with Stem Cell transplant because Indolent Mantle cell Lymphoma is one of the rarest (about  6%) of the about 60 types of Lymphomas, I found out that slow growing cancers are harder to treat than aggressive types.  My Oncologist referred me to Seattle Cancer Center Alliance to consult with the Lymphoma specialist for an opinion on a possible less harsh chemotherapy that the one she was suggesting and to find out about the Stem Cell Transplant because this procedure was not done at my Oncologist location.   After the consultation at the Seattle Cancer Center the doctor there told me that there were three possible paths that I could take, the first choice was to do nothing and to wait for symptoms of the disease to appear in order to treat it, second was to go through chemotherapy and Stem Cell transplant and the third choice was an ongoing Clinical Study for Indolent types of Lymphomas, my immediate decision without much thought was the Clinical Study for many good reasons.  In order to participate in the clinical study one must meet all the requirements and that was my case and I started to take part in the study in August, 2018, two months after my lymphoma diagnosis.  The clinical study is for a 2 year period consisting of one 4 mg pill a week of Ixazomid combined with four Rituximab infusions after the first six months, the infusions are once a week for a month.  So far everything is working great for me, after two months of taking Ixazomid the area has been reduced by 30% from the results of the CT scan, I have only minor symptoms from the medication and I'm due for my second CT scan in two weeks, I'm praying for more progress in the reduction of the disease, the Clinical study is considered a successful outcome after 50% reduction.

After my diagnosis, I did a lot of on-line research because I knew nothing about cancer except what one hears in the media or through friends and relatives, I have learned a lot about Mantle Cell Lymphoma and the current available treatments, I hope that my participation in this clinical study can help many other people to fight the same type of disease that I have now as a first line approach for newly acquired Mantle Cell Lymphoma, there aren't any choices available now except for chemotherapy, for example, I found out that Ibrutinib has been approved by the FDA and can be about 90 % successful in fighting Mantle Cell Lymphoma but its only approved for Relapsed/Refractory cases.  There are clinical studies being conducted all over the world for many types of cancers that will help many people in fighting this disease, for example, Spain is conducting a clinical study with Ibrutinib for newly diagnosed Mantle cell lymphoma, once this is approved in Europe it can make its way to America for FDA approval.

 

 

 

 

 

 

          

po18guy
Posts: 934
Joined: Nov 2011

One of the hematologists at SCCA has essentially saved my life three times now, at least. Even though Mantle Cell is rare, (EDIT) your particular version is not aggressive and being a B-Cell Lymphoma, it generally responds well to the established B-Cell treatments. However, since the lymphoma cells are generally vulnerable to treatment only when they are dividing, and since indolent lymphomas have only a small percentage of cells dividing at any given time, they are harder to eradicate.

But, for this same reason, the indolent lymp[homas and sub-types are considered to be a chronic, manageable disease. Normal or near normal life spans may be observed. Your participation in a clinical trial is commendable, as that is the only way in which medical science is advanced. A substantial reduction is very good progrerss against this diesease which might be likened to a brick wall. It is always building, but slowly. If you knock it back 50% quickly, that is excellent. 

I may even have seen you at SCCA, as I make regular trips there and will be there at least three days this month. Bear in mind that even though a certain drug is not FDA approved ("labelled") for Mantle Cell, it may be used "off-label" against it. I am currently in such an off-label use of a drug called Jakafi. Keep us advised of your progress!

illead's picture
illead
Posts: 832
Joined: Aug 2012

My husband was dagnosed 7/'11.  At that time the only fairly new thing they had was Bendamustine/ rituxan and he went into remission. Almost 2 years later he relapsed 2/'14, 4 mos prior to that the FDA released Ibrutinib for relapsed MCL and CLL only.  He immediately went back into remission.  In '17 he became intolerant of Ib and had to stop taking it and he relapsed again.  He was put on Revlimid (Lenalidomide)/Rituxan and remains on it, so far so good.  In the 7 years since his diagnosis, there has been so much progress made in research for MCL, it is incredible.  You are so fortunate to not have your bone marrow etc. affected and only in one place.  It is so good of your original Onc. to direct you to SCCA and I think the best decision on your part to enter the trial.  I have not heard of Ixazomid but there are so many trials going on now.  I know you will do well and will have good results on your pet.  You just could not ask for more.  I always tell the newly diagnosed with MCL to get to an expert at a good Cancer Institute before they do anything else and try to get into a trial.  I am so happy for you that you did just that.  You were talking about Ibrutinib being studied for 1st line treatment in Spain.  A poster on this forum, Joe Costello, was diagnosed in '15 and he immediately went to MD Anderson in Houston and was put in a trial using Ib followed by Hyper c-Vad.  It is called the Windows trial and I believe it is still going on.  So it has been around for quite awhile and as I said so many other trials continuing and starting up.  You are in the best of hands.  Also in your favor is that yours is indolent.  Po, there is agressive MCL, it is not only indolent.  I know because Bill's is considered blastoid and his ki 67 index is 30-40 considered blastoid variant at 40 and is agressive and much worse than indolent.  So Cisco, keep up the positivity, you are definitly in the right place at the right time.  My best to you and your family, Bill and I know what you are going through.  Just go on with your life, I am sure the cure is close.

Becky

po18guy
Posts: 934
Joined: Nov 2011

You are, of course, correct. Ki67 is the subject of study, and a rate above 45% or so is what some consider aggressive. In some cases, such as DLBCL, aggressive can be better (up to a point) as it is generally more easily killed. Naturally, each variation is different, but as a general rule, the slower growing, the tougher it is. Generalities do not help much, but in this crazy lymphoma world, they help make sense out of it all. Ki67 is a double-edged sword. We all want slower, but those are more difficult to eradicate. No one wants aggressive lymphoma, but sometimes those are the easiest to place in long-term remission.

Here's one study of Ki67 rates and although it is a feast for statisticians, it is a mish-mash of numbers for the rest of us. They seem to make 45% the cutoff point for indolent/aggressive. I see also that they apparently do not differentiate between common DLBCL and double or triple hit variations - which always have a lower survival rate.

yesyes2
Posts: 575
Joined: Jul 2009

Welcome Cisco 2018,  We are a group no one wants to join but we are a welcoming group with lots of information to share.  I think it's wonderful that your first line treatment will be a clinical trial.  And I commend your local Oncologist for sending you to SCCA, and suggesting a clinical trial.

Po, are you currently on Jakifi.  I find it interesting as it is one of a very few drugs used to treat MPN diseases.  I was diagnosed with Polycythemia Vera in February of this year by my Hemotologist at UCSF on a routine follow up appointment for my NHL.  Jakifi was one of the drugs my MPN specialist wanted me on but the latest studies apparently make it a drug I should never take, and my specialists agree.  The latest is that this drug should not be given to people who have had a clonal B cell lymphoma.  I do not know any of the nitty gritty on it.  I know your diagnoisis have all been T cell so should be alright.  Are you familiar with what I am referring too?

Cisco, please keep us informed on your progress we are all routing for you.

Leslie

po18guy
Posts: 934
Joined: Nov 2011

First, an interesting point you raise. Yes, am currently taking Jakafi. Both lymphomas were T-Cell, but I also had MDS, which is a MPN (Dontcha' love all the acronyms?). I am in treatment for chronic Graft-versus-Host-Disease (cGvHD) now. I was in the Kadmon KD025 trial for several cycles, but did not show any real benefit above and beyond the ExtraCorporeal Photopheresis (ECP) that I was also receiving. Stopped that as well as the KD025 and it was then either Ruxolitinib (Jakafi), Ibrutinib (Imbrivica) or good old Methotrexate. 

SCCA being a research-oriented faciity, we decided to go off-label use with Jakafi. A potential win-win there is that I had 20q deletion MyeloDysplastic Syndrome (MDS) at 26% of my marrow just before I was transplanted and something like 2.3% (minimum residual disease - MRD) post-transplant. Gradually decreasing immune suppression seems to have eliminated that, but the Jakafi may also help if any is left in my marrow. 

I don't know if Jakafi is in trial for MDS, but so far it is an easy drug, my blood numbers are fine and most MDS patients are up there in years, so that may be a good choice for them if it is effective against MDS. I honestly have not heard about the Jakafi contraindication in B-Cell patients. Will have to look into that.   

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3088
Joined: May 2012

The official website of Jakafi (jakafi.com) does not yet specify contraindications for B-Cell lymphomas that I could see on cursory review, but then again, it does not yet address use of the drug for conventional Lymphoma at all. 

An awareness of danger in B-cell NHL is probably still something not widely know, understood only by the doctors involved directly in the various trials.

yesyes2
Posts: 575
Joined: Jul 2009

A few months ago I attended an MPN conference in San Francisco where this conection was discussed.  I had left the meeting room for a few minutes and when I returned I heard just the ending of the remarks.  The doctors in attendance where all A 1 MPN specialist and researchers in various fields.  On my next appointment with my MPN specialist at UCSF the following month I asked her about this connection.  She sort of blew me off as there wasn't much of a connection,but then she said let me research the latest news.  She turned to her computer, spent several minutes and turned to me and said, Jakafi is off the table as there is a connection with B cell lymphomas.  And it is not recommended for patients who have had B Cell clonal lymphomas.

Po I did not know that MDS was under the umbrella of MPN (Myloproliferative Neoplasms).  Until a few years ago MPN was not even considered a cancer.  Even some Oncologists don't know this but are being educated by their patients.  Guess that is why we are always recommending newbies go to cancer centers offiliated with the NIH.  Can't stress enough the need for a good, even better, great hemotologist.  My lymphoma was so rare they didn't know exactly what it was or how to treat it.  Were not sure if it was a B cell or T cell but went with a B cell based on the fact I had no B symptoms.  I'm lucky I'm still alive, and these were major medical centers, Stanford and Mass General.

 

 

 

po18guy
Posts: 934
Joined: Nov 2011

Thought is indeed changing in this regard. There are lymphoproliferative as well as myeloproliferative conditions which are non-cancerous as well as cancerous. The polyclonal types - meaning that simply too many cells of a particular type are being produced by the marrow - indicate a marrow disease of some sort, but not a cancerous one. A monoclonoal population of either lymphoid or myeloid cells indicates a single mutated parent cell, i.e. cancer.

An 'odd man out', so to speak, is polycythemia vera (PV), a proliferation of red blood cells. The problem categorizing PV is that red blood cells are non-nucleated and thus carry no DNA. Since they have no DNA, they cannot be a cancer, but one can suffer a fatal complication simply because of too many red cells crowding out white cell and platelet production, as well as thickening the blood and leading to hemorrhages or embolisms. The plus side is that red cells may be transfused with little to no risk of complications.

Certain forms of MDS are known to progress to AML (Acute Myeloid Leukemia), a truly nasty blood cancer. Not all forms of MDS are likely to do this, but all carry the potential. All forms of MDS will eventually take over the marrow, causing life-threatening complications. So, the recent thinking regarding MDS is that it is indeed a marrow cancer of myeloid cell origin. In my case, a single clone cell had multiplied to 26% of my marrow. If not stopped, it would have lead to anemia, sepsis, or other serious conditions.

yesyes2
Posts: 575
Joined: Jul 2009

There are 2 diseases, polycithemia and polycithema Vera to further complicate things.  Polycithemia is not a cancer and is caused by some other disease or smoking.  This condition is cureable if the underlying cause is treated and corrected.  Polycithemis Vera is not cureable without a bone marrow transplant, can lead to Mylofibrosis of the marrow and can then transform to AML.  More and more the doctors are recommending transplants before the disease transforms.  Other then transplant there is no cure or for that matter remission.  One of the first tests done is  lots and lots of blood work, most used to test for DNA transformations.  I am positive for Jak 2 and one lesser transformation.  To have PV you must be Jak2 positive.  Not only blood clots, strokes, heart attacks but also enlargement of the spleen which can lead to some pretty nasty complications, Gout, and anemia.  Side effect of Plebotomy is becoming very anemic.  You can not have iron infusions and transfusions are not recommended.  One final note, the World Health Organization several years ago changed PV to a bone marrow cancer.  The red blood cells are considered the cancer cells.  MPN and MDS are truly confusing diseases.

 

Sorry if we hijacked ths post Cisco.

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