Newly diagnosed with MCL

Hello Lee,

I also recently found this site, our leaders are johnr and The Highlander they are a great resource.  Sorry you find yourself here, but this is a great place to learn more of others experiences.

Wow, that is a rush. Did you get a second opinion?  What are your symptoms? Was on watch and wait for 2 1/2 years before treatment.  Are you at a major cancer? Feel free to ask questions and talk.

yours 

millie

Thank you for your response. I first learned then I was worked up for a low platelet count of 12K. I was evaluated by one Oncologist who was to sure what to make of my findings. She told me I had ITP. That was 4.5 years ago. I have been watching my platelet counts hover in the 70's ever since. I saw a second Oncologist who did a second bone marrow biopsy. I was told I had 1%-2% Beta Lymphoid cells. Stated that many people walk around without symptoms with 1%-2%. He further stated that we need to keep an eye on this to make sure this does not progress. So, over the last 3 years, I had my yearly Chest/abdomen/pelvis CT scan. No changes until last month. This was as the same time my PSA level shot up over 7, and I noted tenderness in my inguinal lymph nodes. They were concerned for a metastatic prostate cancer. My urologist and Oncologist worked together to biopsy my prostate, then my right inguinal lymph node. That was 2 weeks ago. I learned one week afterwards that there was an atypical cell on only one of the twenty-four prostate biopsies. So we are planning a "fusion biopsy" on my prostate in 2 weeks to rule out prostate cancer for certain. However, I learned that same day, my findings confirming MCL from the right inguinal lymph node biopsy. My PET scan confirmed low level activity in my lymph nodes. They feel if we proceed with chemo regimen now (Bendamustine and Rituxan), I have a very high probability of remission. They explained due to my low level from the PET scan and the Ki67 score was 30%. He told me it would be considered aggressive if the Pet scan showed a level 7 or greater and my Ki67 score was greater than 90%. After researching the survivability of the during the aggressive stage of the disease with chemo, and watching for the last 3-4 years of the possibility of Lymphoma, we needed to treat. So this is where I am today. I am an optimist, always looking for the positive in anything in life. Today, findings is more difficult, but hanging in there. This month is going to busy and tough. Thanks again for responding to my first post. I know I have a long journey. I hope I do not become one of the chemo reaction statistics. 

May God richly bless you. 

Lee

Hi Lee, MCL is much more treatable now when compared to 10 years ago so try not to worry to much, easy to say hard to do, but the are options and different treatments should they be needed in the future including stem cell transplants. MCLkid is on a similar journey to you  re mantle cell and treatment so listen to what they advise and ask all the questions you need to. The is a lot to take in but this is do-able and treatable and you will get your head around it. Being positive does help and exercising and drinking lots of fluids supports the body coping with the treatment. A daily diary is good as it allows you to keep a record of how you are along with any questions you have for your consultant.

It would help to know where or which country you are being treated in and do you have an option to be seen by haematology rather than oncology as haemo's specialist in blood diseases which is what MCL is. 

here to help

John 

Good morning Lee and another welcome to this corner of the Macmillan Online Community.

Some great advice as always from Millie and John johnr. John comes from a 10 year journey with Diffuse Large B-Cell Lymphoma, my journey is 20 years with a rare Cutaneous T Cell Lymphoma (Skin Lymphoma) so we are all in the same boat (blood cancer) but have different cabins on the boat. But the treatments used tend to follow the same route........ and as John has mentioned, for me it eventually put me onto the Stem Cell Transplant Rollercoaster and I do hope that I do not see anyone joining me in the seat beside me.

As John has said, the developments over just 10 years has made blood cancers very treatable to the point, when I was diagnosed 20 years back I was told that I would have to live with my condition until it got me..........fast forward to 19 September 2016 I was told I was in remission and NED (No Evident Disease)..... a shock for everyone including my Haematologists.

As John has said, have you ever been seen by a Haematologist? These are the Blood Cancer Specialists. Lymphoma is a very complicated condition and I always think you need the subject specialists on your side. But it depends where you are at and what type of hospital you are being seen in.

But it sounds like you are on track as B&R Bendamustine  and Rituxan is often used..... (being a music man I think it should be called R&B)

The one thing I learned over my 20 years is there is always a plan B,C,D........ so lots of hope and to look into the future. Keep your eye firmly fixed on the greater good in all this.

It is worth putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself.

To do this click on YOUR username, look to the left and select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - REMEMBER hit the big green SAVE before you leave the page. If you're not sure what to write you can take a look at any members profiles by clicking on their username.

Always around to help out, answer questions where we can or just walk the journey with you.

Dear Lee,

Thank you for the background on your situation, I now understand.  

BR is a common frontline of treatment for MCL- and is in some countries it is considered the frontline therapy, it is an effective treatment and less toxic than R-Chop.  It will possibly cause damage to bone and can cause suppression of bone marrow production, and therefore is immunosuppressive so ask your physician if he is keeping an eye on those things (as well as you can looking at your labs) .  I had one cycle of BR myself here in the USA  but it was too strong for my body. I had a DEXA scan to check bone density before and after treatment (and had significant loss of bone accompanied with a fractured vertebrae).  Which is why I changed to BTK/Rituxan treatment. Only other comment from my treatment is to take precautions to not expose yourself to infection, MacMillian has some guidelines that john and the highlander can point you to if you are interested.

I do not know where you are located, but Simon Rule is conducting the ENRICH trial in the UK comparing chemotherapy to frontline treatment with Ibrutinib (a BTK inhibitor) plus Rituxan (a CD20 antibody). The (I+R) arm has been geting great results with no toxicity. There is a thread of discussion on the ENRICH trial in this forum if you care to read about it.  

I personally am on a BTK and low dose Rituxan program and I am doing well. I still have antibody producing plasma cells and my IgG, IgA and IgM levels are normal as well as my pneumococcus antibodies titer so I still have some protection from infection and have not had a hospitalization for infection after being on treatment for over a year. To date, I am negative PET/MRI and have no sign of minimal residual disease (MRD)  (which is a very good sign).

Best wishes to you in your treatment, I know you and your family are nervous, but MCL survival outcomes have drastically improved due to the introduction of biological treatments like Rituxan. We are in a new era of MCL treatment. Take care and we are here to support you at anytime.

Warm regards,

Millie

Thank you john. Actually my physician is a hematologists and oncologist combined specialists. My first physician was only an oncologist.  Thank you for your support. God Bess. 

Some bed time reading

Nausea

Fatigue

Avoiding Infections

Eating and Neutropenia

Peripheral Neuropathy