Just diagnosed with Mantle Cell Lymphoma, freaking out

Hi Paul,

     I just got home and it is late.  Tomorrow I will be gone until late afternoon CA time.  I will write tomorrow when I get home.  One thing though to give you a little encouragement is that my husband was diagnosed with MCL / stage 4 in July '11 and is now a year in remission as of February and feels great.  There is better news than what the internet says.  So hang in there and I will write more tomorrow.  Becky

oncrn50 said:

You will get through this

Don't freak out Paul, your cancer is treatable.  I work  in an oncology clinic, we just finished treatment on a mantle cell lymphoma, and she is in complete remission.  Treatment will cause some side effects, most universally bothersome being intense fatigue.  After treatment, you'll be watched closely with lab tests and scans.  If it recurs, another round of treatment.  I know it's very scary to get this diagnosis, but it is not a death sentence.  Yesterday you became a cancer Survivor.

Hi Paul

     We hope you are feeling a little better today.  We know what the internet says about MCL and it certainly is not what we want to hear.  As we said though Bill is now in remission.  He was given a fairly new chemo called Bendamustine (Treanda) with Rituxan.  At the time of his first chemo, he was so sick and had such low blood counts that the oncologist was afraid he would die with a full dose of chemo so he was given half a dose.  He had 5 more treatments after that at 3/4 dose.  From his first chemo treatment he started to improve and continued progressing rapidly.  The Benda/Rit is pretty easy to tolerate for most people.  Bill never got sick or lost his hair, only a little extra tired for 1 or 2 days.  Since B/R is so new we don't know if there are any statistics about a relapse with it.  I know the usual feeling is that there will be a relapse then chemo will no longer work.  The last time was saw Bill's oncologist he told us that if Bill stayed in remission long enough they could use Bendamustine again.  Our thoughts are that with B/R, the outlook on MCL is changing and we are very optimistic as it seems also is his doctor and the oncology nurses.  It is very frightening to have to face cancer (everyone else has it, not you), much less something like MCL.  Please know though that most cancer centers are very caring and know how to make the ominous much easier.  The nurses and staff are so caring.  We just got home from a friend's memorial who died of breast cancer and 3 of the nurses were there.  They are incredible.  I hope you will be treated with B/R.  If not, you might want to bring it to your oncologist's attention.  Our cancer center is affiliated with the University of California Davis.  If your oncologist wants to, he could probably confer with them about B/R or also the Rideout Cancer Center Marysville, CA.  We are here to support you, so don't hesitate to ask us any questions or share your fears.  Everyone on this forum is very caring and you will probably be hearing from some of them also.  So please hang in there and our thoughts are with you and your family.  Bill & Becky

To ONCRN,

     We want to thank you too for posting.  You are encouraging to us also.  Any encouraging words about MCL are very much appreciated

Paul, I wanted to join in welcoming you to the site and so sorry you have to be here.  There are many many survivors who have been on or still participate on this site.  I have been in remission for over a year and a half from Diffuse Large B Cell Lymphoma so know that hope is alive and well here! .  Your reaction is perfectly normal and you have friends here.  Though researching the internet is useful, it can scare and drive you crazy so you might want to give that a rest until you get into your routine.  There are many folks here with experience similar to yours and you'll find wonderful support on this site.  Most of us are not experts but we have walked the walk and know where you are.  This is not an easy journey but it IS doable .   The beginning of the journey is very tough psychologically but it will get better as you progress.  One of the first things I did was get on anti-anxiety medication - it was a big help at keeping the "worry monster" at bay.  Attitude and humor are free weapons in this war and will help you through this.  Just know you are not alone here, Paul.

Big hugs,

Jim

Hi pauldouglas,

I'm not a frequent poster here. I usually search for news on MCL and this came up. I am a MCL survivor. I was diagnosed in July 2008 with MCL Stage4B at age 38. I started treatments in September 2008. It was R-CHOP follow up with an Autologous Stem Cell transplant. I am currently in remission and have been since my transplant.In June 2009.

I'm doing great and while recovery from the stem cell transplant took a while, I'm pretty much back to normal. All this to say there is life after this. I'm aware of the situation and that I'll have to fight this again, but in the meantime, I'm making the best of it.

Here is a link update regarding the status of prognosis, treatments and post relapse treatments. It's a podcast. It's fairly thorough and paints a realistic picture of the disease. There's usually one a year and this one is last year's.

http://www.cancercare.org/connect_workshops/300-mantle_cell_lymphoma_treatment_update_2012-07-11

If you have any questions, I can either answer here or send me a PM. Whatever you're more comfortable with. 

Raft.

Paul I hope you have found some information. Be careful what you read on the internet. I was diagnosed April 1 2011 with MCL. Still fighting. Many new treatments are coming along. There is a great group of MCL folks on Facebook. Not sure if you use Facebook but it is packed with knowledgeable people that have beat MCL or are still fighting. Here is the link. You have to request membership since it is a closed group.

Here is some info on it.

Terry

Paul,

I am in hopes that this finds you in a much better state of mind, but knowing that one has cancerous cells inside them is unnerving. I agree with wht everyone said, the internet is usually outdated on treatments and life expectancy type stuff, however it is good to research and learn as much as you can about what you are dealing with. Once your treatment begins you will learn that you have  "new normal", as hard as this is for you to wrp your mind around right now, it will happen. Stay optimistic anddd have faith in yourself and your healthcare team and also the advancements in medicine. When I was diagnosed several months ago, I kept telling myself I wasn't going to be one of those "sick"people, you will see that it isn't as bad as you imagined that it could be. In fact, you will feel so much love and compassion from people it will make you wonder how you could have been so blessed to have such wonderful people in your life.

Keep us posted

XXXOOO

Carie