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Just diagnosed with Mantle Cell Lymphoma, freaking out

pauldouglas
Posts: 1
Joined: May 2013

I was diagnosed Wednesday with MCL after a biopsy of a supraclavicular node.  I don't have an initial apointment with an oncologist until Tuesday  What I'm seeing online is not overly encouraging, to say the least.  My family practitioner, who delivered the bad news, kenw nothing about MCL.  Can anyone with experience give me a synopsis of what I'm in for?  Any advice suggestions, etc. would be appreciated.

illead's picture
illead
Posts: 544
Joined: Aug 2012

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
Posts: 1
Joined: Jun 2013

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.

illead's picture
illead
Posts: 544
Joined: Aug 2012

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

jimwins's picture
jimwins
Posts: 2064
Joined: Aug 2011

I wanted to welcome you here and thank you for what you do.  I met so many nice, knowledgeable, caring RN's during my treatment.

Warm hugs and again welcome,

Jim

Rocquie's picture
Rocquie
Posts: 499
Joined: Mar 2013

I have a different lymphoma but I sure know what you mean about "freaking out". Actually, if possible, I was a little beyond freaked out--I was scared to death. I could not make myself read anything online. My husband did all the learning and research for us. I wouldn't even listen to the doctor, the nurses, or even my beloved husband talk to me about side effects--it scared me too bad. There is no way I would have joined a site like this.  I eventually "settled down" and you will too. You will come to know how treatable your lymphoma is. You will be treated with so much care and compassion and real concern and respect in every way. These things will help you. Prayer helps too.

(((Hugs)))

Rocquie

 

jimwins's picture
jimwins
Posts: 2064
Joined: Aug 2011

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

Raft
Posts: 1
Joined: Nov 2012

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.

 

melleejohn
Posts: 1
Joined: Jun 2013

Hi there.  Just wanted to give you a few points and a bit of information.  First off, the information that is on the internet is not generally current on MCL.  There are new drugs (Ibrutinib) and new treatments out there.  There are also trials that you may be able to join.  Many doctors have never heard of MCL.  We found that to be true too.  I would encourage you to search the internet for not only updated information but also research doctors who have a keen interest in MCL.   This is very important.   That is really the direction you want to go.  We have made two trips for testing, etc. to MD Anderson.  We decided to get a second opinion from a doctor at Johns Hopkins in Baltimore and will be starting chemo for my husband this week. 

 

I would also encourage you, after you have found the right doctor, keep yourself organized with all treatments, tests, biopsies, appointments, etc. in folders.  Print out all information you can on MCL.  You will appreciate this as you go along in this journey.

 

I get it.  We have been in a state of shock concerning this diagnosis, but have "settled down" and now are very optimistic with the diagosis.  Many people live with this for a long time (not what many web sites indicate...most of them are at least 3 years old).  You can also research MCL blogs.  There are a few out there that will give you a new perspective on what you have.

 

Keep yourself in good health.  And, of course, you have the power to decide where you want to go with this as far as treatment is concerned.  Knowledge IS power! 

 

Take care.

tjslagle
Posts: 1
Joined: Jun 2013

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.

Our MCL Family is a private group offering the inside scoop and peer support from Mantle Cell Lymphoma survivors plannin...g to be here and healthy for a long, long time! Here you'll find timely updates and lively discussion on MCL news & research, novel and emerging treatments and information on preventing and dealing with side effects. We also welcome updates on general health and fitness news to optimize our health and happiness.

All are welcome to ask questions and share info! Please let us know when you are getting scans or need the group's prayers and positive thoughts -- for any reason at all. And let's celebrate our good news together! All are welcome to post good news on clean scans, anniversaries, the end of chemo and more! We're a family through good times and the not so good.

To request membership, contact one of our admins.

The admins/community managers for Our MCL Family are long term Mantle Cell Lymphoma survivors Sherry Clark and David Miller and co-admin Liz McMillan, a 6-year DLBCL survivor and founder of Hope for Lymphoma.

 
 

Terry

hunter46
Posts: 8
Joined: Apr 2013

Im sure you have seem your oncologist by now that was my 1st suggestion.  Get second opinions.  I dont know where you live but Mayo U of Minnesota One of the cancer centrers.  What I have been thru may not match your treatment.  Dont believe all the internet stuff.  Even since I was diagnosed their are many new treatments.  I have just been diagnosed for the third time an currently under treatment.  Going for my Pet Scan tomorrow.  Its a ongoing process.  I wish you Gods blessings and let us know how it goes.

girliefighter's picture
girliefighter
Posts: 214
Joined: Mar 2013

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

illead's picture
illead
Posts: 544
Joined: Aug 2012

I just got an email the other day from lrf@lymphoma.org saying that lenalidomide has just been approved by the FDA for use on MCL.  I realize you are well along in your treatment but I believe this is for the 2nd or 3rd relapse and it is a pill.  I just haven't read back over the info but you can go to the site if you are interested.  Becky

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