Mantle cell lymphoma - need survivor stories

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  • illead
    illead Member Posts: 880 Member
    edited April 2017 #122
    Bob s said:

    MCL

    Hi 

    I have just been diagnosed with MCL. My Doctor wants me to use Retuximab along with Bendamustin as front line therapy and then hopefully harvest my stem cells later. I am 50 years old. I am going for a second opinion yet I see that in an older post this is a relatively new approach that was originally developed in Germany and has shown good results. The hardest part so far is looking to the future. I am going to fight this with everything I have but I am concerned about a Stem cell transplant as you also mention that some Doctors don,t recommend that. Any advice would be most welcome.  

    Thanks

    Hi Bob

    Sorry you have to be on this site but I am glad that you wrote.  You are right about Benda/Rit, my husband was given it.  It was very easy on him and his hair did not fall out, although he doesn't have much to worry about  Laughing.  There is another thought though that a stronger chemo might help one stay in remission longer, but even the MCL experts don't agree on that.  Bill relapsed 2 years after remission but he was in very poor shape when diagnosed and the dr. only gave him 3/4 dose.  When he was doing better we asked if he should go to full dosage, the dr said since he was doing good on the 3/4 he wanted to keep him on it.  Who knows if that affected his relapse?  When we were thinking about an SCT, we emailed an expert in the states and two MCL experts in Germany, they all answered back basically no.  That too is a debate still but I think the tendency is to not do it.  I agree strongly that you need to get a 2nd opinion from an MCL expert.  I don't know where you are or if you can go somewhere away from home.  Dr Michael Wang at MD Anderson in Houston is a real pioneer and passionate about finding a cure, there are several trials going on at MD and I think your young age and I assume good health would make you a good candidate.  Other great drs. from what I hear is Dr Leonard at Weill Cornell in NY,  Dr Andre Goy NJ,  Dr Brad Kahl Washington U St Louis.  There are others and I hear good things about Fred Hutchinson CC in Seattle, Bill went to Stanford also when he relapsed, Dr. Advani.  If Bill needs another opinion down the line we would choose Dr. Wang first.  I wish you the best, I know this is a life changing diagnosis but you will be okay,  There is so much out there now and more on the horizon and it is getting more and more positive to deal with, so hang in there.  BTW, if you want to continue on this forum, you might want to start a new thread, on these old ones sometimes you could get lost.

    Thinking of you and your family,

    Becky

  • MCL Survivor
    MCL Survivor Member Posts: 1
    Bob s said:

    MCL

    Hi 

    I have just been diagnosed with MCL. My Doctor wants me to use Retuximab along with Bendamustin as front line therapy and then hopefully harvest my stem cells later. I am 50 years old. I am going for a second opinion yet I see that in an older post this is a relatively new approach that was originally developed in Germany and has shown good results. The hardest part so far is looking to the future. I am going to fight this with everything I have but I am concerned about a Stem cell transplant as you also mention that some Doctors don,t recommend that. Any advice would be most welcome.  

    Thanks

    I was dx with Stage 4 Non

    I was dx with Stage 4 Non-Hogdkins MCL in July of 2013. I went to the ER at a different Hospital then I had been going to because they kept sending me home saying nothing was wrong with me. I decicded to finally go to a different Hopital where they did further testing (CTscan) and found a tumor outside my pancreas. I immediately had a port put in and they did a biopsy the next day to confirm. I started with Hyper CVad chemo with rutixin and went into remission in 3 months but the Dr's continued the full regimen of chemo followed up by an autogolus bone marrow transplant after 8 mos. I continue to be in remission. My new normals are low red blood cells, white blood cells and platelets. I get tired easily and find a nap is in order most days. I continue to get monthly testing and phlembotomies due to high Feritin. Its no cake walk but success is achieveable. I wish you success and please reach out if you have any questions. I would contact LLS.org (Lukiemia and Lymphoma Society) they have financial assisstance available with their co-pay program. They can help with insurance  and prescription costs. They are a godsend to me. Stay positive and get plenty of rest but most of all stay positive it makes a big difference.

  • Evan
    Evan Member Posts: 3
    New to this site - Joined today (MCL Survivor)

    Hello Everyone,

    Hope to be able to contribute to this site/discussion. 

    BACKGROUND.  I was diagnosed with MCL June 6, 2017.  I underwent 6 of 8 R-HCVAD treatments between July and November 2017. I just completed my ASCT (my own stem cell transplant) this past January 2018 and will soon begin rituximab maintenance for the next 2-3 years.  I was 50 years old at the time of my diagonosis and recently retired from the Marine Corps after 26 years, 9 months. Not sure what the future holds but encouraged by what I see as study results for MCL.  I plan to be around until October 2040.  My MCL oncologist is out of the Swedish Cancer Institute, Seattle, WA. 

    I will do my best to monitor this site and provide input.  Look forward to future discussions.

    Evan

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    Welcome

    Welcome to you, Evan.

    Thank you for your Marine Corps service; I was a submarine sailor for six years -- weapons systems electronics.

    Our MCL "resident expert" is Becky, the wife of her husband MLC patient, Bill (screen name Illead )

    This thread is 13 years old and a bit unwieldy, so you may want to start your own thread for easier navigation; they are free !

    If Becky doesn't get back to you soon, send her an email, since most people get alerts when they have an email in their Inbox.  Becky is a storehouse of the most recent MCL data. Treatment changes are happening faster for MCL than perhaps any other form of Lymphoma. MCL is somewhat rare, but not so rare as to be ignored by researchers.

    max

  • Evan
    Evan Member Posts: 3

    Welcome

    Welcome to you, Evan.

    Thank you for your Marine Corps service; I was a submarine sailor for six years -- weapons systems electronics.

    Our MCL "resident expert" is Becky, the wife of her husband MLC patient, Bill (screen name Illead )

    This thread is 13 years old and a bit unwieldy, so you may want to start your own thread for easier navigation; they are free !

    If Becky doesn't get back to you soon, send her an email, since most people get alerts when they have an email in their Inbox.  Becky is a storehouse of the most recent MCL data. Treatment changes are happening faster for MCL than perhaps any other form of Lymphoma. MCL is somewhat rare, but not so rare as to be ignored by researchers.

    max

    Thank You

    Max,

    Appreciate the reply and insight.  I have seen Becky's name mentioned, along with her posts, throughout this site as I scanned through it today.

    R/

    Evan

  • illead
    illead Member Posts: 880 Member
    Hi Evan

    Well, here I am, Laughing sorry you have to be here but very glad you found us, like Max said you should start a new thread, it will be easier.  It sounds like you are in good hands, if your onc is familiar with MCL. That is quite a heavy protocol you have been through, it could not have been easy.  I haven't updated Bill's page yet since he relapsed twice this year but I will get to it.  He started on Bendamustine/Rit in 8/11, relapsed in 4/14 and was put on Ibrutinib until he became intolerant of it with side effects around the first of this year.   He relapsed again (April this year) after being taken off of it then put back on , back in remission, off Ib again, another relapse.  We saw Dr. Michael Wang at MD Anderson in Houston who put him on Revlimid (Lenolidomide)/Rit in Oct.  He is still in remission and Dr. Wang hopes it will be for a long time.   I am a guarded expert lol, but I do keep up with the latest and monitor a site called ACOR which has a board for MCL only, you might want to check it out.  Also there is an MCL page on Facebook I hear.  I have not checked it out yet but intend too.   So far Bill is doing great, and feels really good, it has been a rough year though.  Like Max said, MCL is rare but so much research is going on that there is always something new and lots of clinical trials.  Fred Hutchinson in Seattle has some going on I think and some experts in MCL there also.  Feel free to ask any questions, I monitor this site everyday and will always answer.  You have the attitude it takes to keep going, and there is a lot of hope out there.

    My best to you,

    Becky

     

  • Evan
    Evan Member Posts: 3
    Thank You Becky

    Becky,

    Thank you for the information.  I think I found the ACOR site (ACOR.org - Association of Cancer Online Resources).  Working on joining the site now.  Also, I will have my wife search Facebook for the MCL page (I don't do Facebook). 

    You and Bill are quite the battlers and that is inspiring.  Keep fighting the good fight as we all are.  Bill has received some treatments that I don't recognize the names - - yet (could be in my future sometime??).  Glad he is back to doing well.  What is Bill's page called?

    To be quite honest, the information I seek is life expectency post treatment (I think the studies use the terms progression-free-survival / overall survival).  This kind of information is really going to drive some new thoughts and decisions for me - - near term.  I have kind of taken on the axiom "plan for the worst and hope for the best."  To me the worst case is ~5-10 years (seems to be the what I have read in some recent studies although they go on to say could be individual biology driven) but I am looking for best case of at least 22+ years. Best case seems feasible based on what you mentioned about all the ongoing research.  I wasn't a candidate for clinical trials initially but who knows down the road.

    Again, really appreciate you taking the time to comment with all you have going on.

    You and Bill take care.

    Evan

  • illead
    illead Member Posts: 880 Member
    Hi Again Evan

    To get Bill's page, just click on our picture.  Like I said tho, it is not updated but you got the basics in my last reply, and his story will tell you about Ibrutinib.  Since then tho, there is an orphan drug to Ib that is better and easier on the side effects.  It was just released by the FDA a few months ago, it is called Acalabrutinib.  They are both target drugs, it's actually a pill, they are both for relapsed MCL, however there is a trial that has been very successful using Ib as first line followed by hypercvad.  You will find out a lot on Acor, those guys really know their stuff, I also hear facebook is awesome,  Bill's new onc is on it.  I don' think your sights are set too high regarding life exp. There is and has been so much more out there now than when many articles about MCL were put online, we are very fortunate.  We have good reason to be optimistic, so keep your good attitude and keep up the fight but also of most importance is we have to enjoy life.

    Thinking of you and your family,

    Becky 

  • Trixie J
    Trixie J Member Posts: 1
    edited July 2018 #130
    Questions about remission

    Hi Everyone, I was dx with MCL 2/13/17 and had a really rough time of it.  I have one of the best doctors I could have hoped for, he is one of the leading experts for MCL.  I had my biopsy and was told I was stage IV and it was in my marrow.  My cancer was progressing fast so my doctor chose to put me on E-POCH/rit.  The treatment was inpatient and 24/5 every 3 weeks with a shot of Nulastin on day 6.  I did 2 rounds and after each round I ended up back in the hospital on my death bed, after the second round I ended up being lifeflighted to a Spokane hospital where they told my family to say their goodbyes because I would not make it through the night.  I was ready to give up because each day got worse but the look in my husbands eyes when he was told this was enough to make me fight.  My regimen was switched to Bend/Rit for 4 rounds and things got better my hair even started to grow back.  After my chemo was done I did the prep for SCT and went through it in October, with the SCT I had to have the BEAM and again went downhill fast and was told I won't make it through the night. 

    Long story not so short just because they say your at the end doesn't mean it has to be.

    In December I underwent raduation and 5 weeks after was told I was in remission.  

    I have no one to ask questions to and have some concerns I'm hoping someone who is in remission can help me with.  For the past couple months I have had fevers as high as 102, fatigue, vomiting, chills, been nutrapenic again and have pain in the site where my cancer was.  Is this normal or should I be concerned?

  • illead
    illead Member Posts: 880 Member
    edited July 2018 #131
    Hi Trixie

    You may have read that my husband is the one with MCL.  He was diagnosed 7 yrs. ago this month.  With your history I would definitly call your oncologist.  I don't want to scare you and hopefully it is just coincidental but there are just too many symptoms to not do anything.  You have been through a battle dear lady, and you know the importance of not giving up and you also know there is so much out there to keep fighting MCL.  Please let us know what is happening and if you haven't called your onc yet, please do so today!  You might consider starting a new thread on the forum as this one goes way back and is quite long.

    Hoping for the best,

    Becky

  • gottarace
    gottarace Member Posts: 17
    edited August 2018 #132
    Just found out today

    Hi all,

    I just found out today I have Mantle Cell. I found the swollen lymph node by total accident. My head is spinning right now. Scheduled to see the Dr on Wed. 

    Hope to get some info and maybe good news from people who are going through this.

    Right now I have no symptoms at all. Like I said I found te node by accident.

    Thank you all...

    Todd

  • illead
    illead Member Posts: 880 Member
    edited August 2018 #133
    Hi Todd

    I'm sorry you have to be here but I hope you find us to be supportive and comforting.  You no doubt have read the entry from me just before yours.  I know how you must feel right now but as I have said many times, there is so much research and headway that is and has been happening with MCL that gives us every reason to be encouraged.  My very strong suggestion to you is to see an expert.  Many oncologists have not even heard of Mantle cell but there are some awesome and passionate caring experts out there who are dedicated to finding a cure for MCL.  If you don't mind to tell me where you are from I can make some suggestions.  You can private message me if you want by clicking on our picture then follow the promps to send a message.  There are a lot of clinical trials going on that are very positive including ones for first time diagnosis.  My husband is going to Dr. Michael Wang at MD Anderson in Houston (we live in CA) and he has a very successful trial going on for first time called "windows".  He is one of the top experts for MCL.  Some others are Dr. Brad Kahl St. Louis (Washington Univ), Dr John Leonard, Weill Cornell NY. Dr Andre Goy Hackensack NJ plus many more .  I cannot stress enough how important it is to get with an expert right off the bat.  When Bill was diagnosed in '11 there was not much out there, but there has been so much progress made and so much more "in the wings" that MCL is not near as ominous as it was then, so you have a lot to be hopeful for.  So don't give up and think positive.  I will be happy to answer any questions you have, I have done a lot of study on MCL.  Hang in there and please get back to me.

    Becky      PS:  As you can see this particular thread is very long and outdated so you would do better by starting a new thread.  Just click on Discussion Boards at the top left of this page, then click on Lymphoma, then click on start a new topic

  • gottarace
    gottarace Member Posts: 17
    edited August 2018 #134
    illead said:

    Hi Todd

    I'm sorry you have to be here but I hope you find us to be supportive and comforting.  You no doubt have read the entry from me just before yours.  I know how you must feel right now but as I have said many times, there is so much research and headway that is and has been happening with MCL that gives us every reason to be encouraged.  My very strong suggestion to you is to see an expert.  Many oncologists have not even heard of Mantle cell but there are some awesome and passionate caring experts out there who are dedicated to finding a cure for MCL.  If you don't mind to tell me where you are from I can make some suggestions.  You can private message me if you want by clicking on our picture then follow the promps to send a message.  There are a lot of clinical trials going on that are very positive including ones for first time diagnosis.  My husband is going to Dr. Michael Wang at MD Anderson in Houston (we live in CA) and he has a very successful trial going on for first time called "windows".  He is one of the top experts for MCL.  Some others are Dr. Brad Kahl St. Louis (Washington Univ), Dr John Leonard, Weill Cornell NY. Dr Andre Goy Hackensack NJ plus many more .  I cannot stress enough how important it is to get with an expert right off the bat.  When Bill was diagnosed in '11 there was not much out there, but there has been so much progress made and so much more "in the wings" that MCL is not near as ominous as it was then, so you have a lot to be hopeful for.  So don't give up and think positive.  I will be happy to answer any questions you have, I have done a lot of study on MCL.  Hang in there and please get back to me.

    Becky      PS:  As you can see this particular thread is very long and outdated so you would do better by starting a new thread.  Just click on Discussion Boards at the top left of this page, then click on Lymphoma, then click on start a new topic

    THANK YOU!!!!

    Thank you so much. I am is Southern Ohio. Chillicothe Ohio's First capital. I have an appointment tomorrow with the Dr to see what the plan off attack is. I have tried to find info on enlarged node? Do they remove them once they know what has caused it? to date I have no symptoms, I found the enlarged node while on vacation. We were in Punta Cana on our Family vacation and the maids were running behind. We only had 1 washcloth in our room. I decided to shower and leave the washcloth for my wife to use. So i washed with just soap and barehanded. That was how I found the lump on the inside of my right leg. It had not been for that??????? Who knows when or if I would have found it...

    Thank you again

    Todd

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    gottarace said:

    THANK YOU!!!!

    Thank you so much. I am is Southern Ohio. Chillicothe Ohio's First capital. I have an appointment tomorrow with the Dr to see what the plan off attack is. I have tried to find info on enlarged node? Do they remove them once they know what has caused it? to date I have no symptoms, I found the enlarged node while on vacation. We were in Punta Cana on our Family vacation and the maids were running behind. We only had 1 washcloth in our room. I decided to shower and leave the washcloth for my wife to use. So i washed with just soap and barehanded. That was how I found the lump on the inside of my right leg. It had not been for that??????? Who knows when or if I would have found it...

    Thank you again

    Todd

    Sites

    Let me say welcome to you also, Todd.

    The bulk of Becky's reply to you was that you seek out a MCL specialist at a good facility.  The best cancer center in Ohio is The Cleveland Clinic, but it would be a substantial drive from southern parts of the state.  The bottom line is do not settle for a local bumpkin who has seen maybe two cases of MCL in his career.

    Her advice to start your own thread is well founded also. It takes about 30 seconds, and they are free.  Few readers are willing to take the time to scroll through three pages of decade-old stuff to read something.

    Good luck with this. With Becky, you have a priceless asset on your team,

    max

     

  • illead
    illead Member Posts: 880 Member
    Hi again Todd

    I hope you don't mind, I am going to start a new thread for you.  I will entitle it "Just diagnosed with Mantle Cell".  It should appear right above this thread.  Hope that's ok.

    Becky