nodes getting bigger Mantle cell

ceili

So my mother just had another check up with her oncologist to go over her recent blood work which all looked good. She actually said her blood work has been getting better her last few check ups. However she said that it appears her nodes to appear to be increasing in size. She has not been treated as of yet. The doctor suggested to keep on the 3 month check ups because her blood work is fine and she feels o.k. I guess I was just curious if anyone else had any of the same experiences with waiting until symptoms arise other than enlarged nodes? She was diagnosed about 2 years ago with Mantle cell lymphoma due to a lump in her neck. Thanks in advance.

Max Former Hodgkins Stage 3

Blood

Blood analysis is nearly worthless in accessing lymphoma....my bloodwork was NORMAL throughout advanced Stage III disease.

If the nodes are enlarging, the disease is moving forward.  Respond accordingly.

max

illead

expert needed

My husband has been battling MCL since '11.  My best advice is to see an MCL expert.  Most oncologists are very dedicated and caring but usually have never dealt with MCL or even heard of it, so they no doubt would use a "textbook" treatment.  There are many experts in the field and a lot of clinical trials going on and new thinking and meds for treatment, so it is definitely a must to go to someone in the know.  We go to Dr. Michael Wang in Houston and there are others there.  Dr. leonard and others at Weill Cornell Dr Brad Kahl Washinton Med in St Louis Dr Goy Hackensack NJ. Fred Hutchinson med Seattle, Stanford etc.  If you don't mind to say, where are you located?  There is so much   research and more new things on the horizon.  Please ask me any questions.

Becky

ceili

illead said:

expert needed

My husband has been battling MCL since '11.  My best advice is to see an MCL expert.  Most oncologists are very dedicated and caring but usually have never dealt with MCL or even heard of it, so they no doubt would use a "textbook" treatment.  There are many experts in the field and a lot of clinical trials going on and new thinking and meds for treatment, so it is definitely a must to go to someone in the know.  We go to Dr. Michael Wang in Houston and there are others there.  Dr. leonard and others at Weill Cornell Dr Brad Kahl Washinton Med in St Louis Dr Goy Hackensack NJ. Fred Hutchinson med Seattle, Stanford etc.  If you don't mind to say, where are you located?  There is so much   research and more new things on the horizon.  Please ask me any questions.

Becky

Becky

Hi Becky, We are living in eastern Canada. I know her oncologist has some experience with Mantle cell as she has mentioned a few of her other patients with the same disease. She also discusses her cases with a team of oncologists before making decisions on treatment. She did say her treatment when needed will probably be Bendamustine and Rituxan " probably spelled wrong". It would be impossible for us to travel outside the country to see someone else.  I appreciate the info though. My guess is she will start treatment in the new year as she has another check up in January unless other symptoms arise before then or the nodes get dramatically bigger before then. Her oncologist said since she has no other symptoms at all other than the enlarged nodes that is why she is holding off a little longer but I really think they will start treatment in January regardless. Thanks again for the info

Scott.

illead

Hi Scott

Yes, that is a problem.  The good news is that her oncologist is familiar with MCL, so I am sure he or she has or will do research.  My suggestion for you is to be a good advocate, do some research on the doctors and institutions I have mentioned and make some print outs to give to the dr.  I wonder if there are any MCL specialists in Canada, not sure how your system works.  I thought that was you on ACOR.  I could never figure out how to join but someone sent me a link to the messages, so I guess I am a "lurker" but I have learned volumes from them.  Since you are able to converse, they may know of someone in Canada, I would throw it out there.  Wait and watch is being used more and more even by the experts.  One of the posters here is also going to MD Anderson (her husband is the patient).  The specialists conferred and since he is not symtomatic and stage 2, they put him on wait and watch.  The feeling is not to put the body through chemo at this point because lymphoma is different than most other cancers, it usually doesn't matter if you catch it early and staging isn't the same as other cancers, the majority of lymphomas are diagnosed at stage 4.  So study up but also be careful not to believe a lot of things you read about MCL.  Some of the info is outdated and there has been so much happening now that it is not near as ominous as it was just a few yrs. ago.  BTW, Bill was on B/R for first line treatment and immediately went into remission and it is still being used as a preferred protocol.  Bill had no problems or side effects although some do.  A good thing though, Bendamustine does not attack the hair follicles so the patient doesnt lose there hair.

I wish you both the best,

Becky

ceili

illead said:

Hi Scott

Yes, that is a problem.  The good news is that her oncologist is familiar with MCL, so I am sure he or she has or will do research.  My suggestion for you is to be a good advocate, do some research on the doctors and institutions I have mentioned and make some print outs to give to the dr.  I wonder if there are any MCL specialists in Canada, not sure how your system works.  I thought that was you on ACOR.  I could never figure out how to join but someone sent me a link to the messages, so I guess I am a "lurker" but I have learned volumes from them.  Since you are able to converse, they may know of someone in Canada, I would throw it out there.  Wait and watch is being used more and more even by the experts.  One of the posters here is also going to MD Anderson (her husband is the patient).  The specialists conferred and since he is not symtomatic and stage 2, they put him on wait and watch.  The feeling is not to put the body through chemo at this point because lymphoma is different than most other cancers, it usually doesn't matter if you catch it early and staging isn't the same as other cancers, the majority of lymphomas are diagnosed at stage 4.  So study up but also be careful not to believe a lot of things you read about MCL.  Some of the info is outdated and there has been so much happening now that it is not near as ominous as it was just a few yrs. ago.  BTW, Bill was on B/R for first line treatment and immediately went into remission and it is still being used as a preferred protocol.  Bill had no problems or side effects although some do.  A good thing though, Bendamustine does not attack the hair follicles so the patient doesnt lose there hair.

I wish you both the best,

Becky

Thank you

As always Becky thank you for all the valuable infio. It is appreciated. Wishing you and Bill the best.
Scott.

Sheryl A

Hi Scott,

I am probably the poster Becky was referring too. My husband was diagnosed with MCL in October 2017 via a lymph node biopsy. The lymph nodes on the right side of his neck were swollen which began us on this journey.  We live in the Houston metro area (sort of - in the far outskirts) and so applied to & were accepted as patient at MD Anderson in the Lymphoma and Myeloma Clinic. Dr. Hun Lee is my husband's oncologist. Subsequent tests (bone marrow biopsy, PET scan)  placed my husband at Stage 2. His blood work is great and so far he is not exhibiting any other symptoms except for that swollen lymph node that started us on this journey. Dr Lee & the other lymphoma experts at MDA have placed him on "wait & watch". We return in February for another PET scan and more blood work. After that, the decision will be made to continue "wait & watch" or begin treatment. 

We are still new to all this, but our understanding is that more than blood work is needed to stage MCL. Becky is correct in that you need to learn as much as possible in order to help you mother. It is a lot for one person to handle. One tool we have found helpful is a voice recorder app for our cell phones. It has been very helpful to record the doctor visits/ consultations and then play them back afterwards. We always find items the oncologist talked about that we missed.

Best wishes for your mother! 

Sheryl