Diagnosed with Stage IV Mantle Cell Lymphoma (Non-Hodgkin)
I am writing this journal to inform and keep my family and friends up to date with my health issue; it seems like a much better, private and personal forum than social media. I will start from the beginning as there are few that know what has transpired. I hope that through this site I can disseminate updates without accidentally forgetting to include someone on a text, email or call and so that I don't have to retell the events individually; that is painful at times. I consider you all dear to my heart and you are loved by me but I would ask that you please have patience with me if you reach out and I don't immediately respond. This is a complete blind side to me and my family and we are all still trying to process everything. That being said, I really want you all to know what's going on and I will do my best at keeping you up to date.
The Beginning: In mid-May I noticed a few lymph nodes on the side of my neck; they were literally visible bumps on my neck and had appeared seemingly over night. I saw my doctor and she confirmed they were "at the high end of normal" but that watchful waiting was in order. I had blood work done two weeks prior and the results were all normal.
About 8 weeks later it seemed the nodes had grown and I had found a few more in my neck. I went to an ENT who examined me and sent me for a scan. The results of that scan led to an ultrasound, labs, biopsies of my thyroid and a diagnosis of B-Cell Lymphoma (Non-Hodgkin), "suggestive" of Mantle Cell, on August 29, 2016.
Following this I was referred to an hematology oncologist and I had numerous additional labs, exams, a lymph node biopsy and a bone marrow biopsy. On September 29, 2016, I was diagnosed with Stage IV Mantle Cell Lymphoma (MCL).
Some of the following will sound clinical but I want to give you all an overview of what is going on and hopefully answer the types of questions that I seem to be getting.
What is this?: Lymphoma is a "blood cancer." Mine is a B-Cell, Non-Hodgkin lymphoma (NHL). There are approximately 70 different types of NHL; Mantle Cell makes up only 5% and is considered quite rare. Interestingly, MCL is predominately found in men with an average age of 60.
MCL is an incurable disease. It affects the lymph nodes and can spread into other organs and bone.
Where is my MCL? Currently, my MCL is only in the lymph nodes in my neck. Thus far no other lymph nodes have been effected. This is great news! However, my thyroid is diseased and my bone marrow biopsy showed less than 5% affected. Unfortunately, any disease in the bone marrow moves a blood cancer to a Stage IV.
Prognosis? The clinical, initial prognosis is on average 5 years from the diagnosis with 72% reaching that marker with proper treatment. However, I am young and otherwise in great health. On Thursday, my doctor mentioned 10 years as a real possibility. (I just spoke with a woman this morning in California who has had MCL for 11 years and she is doing great. At the time she was diagnosed, there were only 5 other women who had the diagnosis. There is hope!)
Treatment? There is only chemotherapy available as an option. No surgery, no radiation. It is my understanding that there are many combinations of chemotherapy and there new drugs being researched all the time. There was a new drug just approved in May of this year to treat this disease.
Where am I going to treat? After discussing this with my doctor at Mountain States Tumor Institute (MSTI) in Boise and with my family, and researching different places, we have decided to get a second opinion and discuss treatment options at Seattle Cancer Center Alliance (SCCA). They are a leader in cancer research/studies/treatment and will likely have a MCL specialist. Of note, my doctor here in Boise is only treating 2 other MCL patients; that's apparently how rare this is.
When will I start treatment?: I have been told that I will get into SCCA in approximately 2 to 2-1/2 weeks. At that appointment treatment options will be discussed and a game plan made. Again, I am not sure if I will use SCCA as merely a "specialist" who follows my treatment and have treatment in Boise, or if I will travel to Seattle for my treatment and use Boise for my "maintenance" type of treatment (labs, etc.).
How do I feel?: This is a HUGE question that changes day by day and sometimes minute by minute.
Physically, I feel great at the time of writing this. I have gone through some times of pretty severe fatigue and need to nap throughout the day. I have the feeling of the "flu" and I get random fevers. My thyroid medication has been adjusted (doubled) and I actually feel better in the past week or two than I have for the previous month. I am told that at this point I am under nourished and need to gain weight, especially before chemo. I am trying to understand my new reality, that of being weak and tired and not having the stamina that I did just a few months ago. I am grateful any time I feel "healthy" throughout my day.
Emotionally I think I am just as much challenged at times if not more challenged than any physical issue I may be having. I have all the emotions possible, sometimes they are singular and other times they are all bunched together. I am scared, anxious, nervous, tense, sad, but I am also happy and joyful, hopeful and faithful. I feel totally loved by my family and my friends that have learned of this and I know that God will be with me through this; there is a LOT of peace in that.
Mentally I feel very strong. I have researched to the nth degree and I feel educated and powerful with my knowledge. I believe that there is a lot of strides being made and I am convinced that I will definitely outlive expectations. My personal goal at this point, is to live the best life I can for as long as I can.
What can you do to help?: Pray. At this point that is really what I need. The need for help will change dramatically I am sure, once treatment starts. I will let you know what I need when that time comes. I would ask for those of you who are connected with Jody, my sons, my Mom and my in-laws, that you keep them in your prayers as well. Please don't forget to reach out to them during this process.
What "color" of support is this?: I was asked this, and I too wondered, what color to wear for support. MCL doesn't have its own color, but Non-Hodgkin does, it is Lime Green!
A Good Resource for Education: The Leukemia and Lymphoma Society, (LLS) at, www.lls.org is a reliable source. From their website, the following is a link to some education on Mantle Cell: http://www.lls.org/sites/default/files/file_assets/FS4_Mantle%20Cell%20Lymphoma%20Facts.pdf
Again, I will do my best to fill you in as I know what is happening. At this time there is no appointments for the next couple weeks. The next one should be in Seattle and then I see my Boise doctor October 21. We should have a treatment plan by then.
Thank you all for your support and love.
Lynda