Mantle cell lymphoma - need survivor stories

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  • lady_linda
    lady_linda Member Posts: 3
    pj2015 said:

    MCL and female

    Hope all goes well for both of us. I start my first chemo in the morning. Not sure what to expect!

    Cycle 3

    I am starting cycle 3 this morning. Expect that you are in good care, that staff knows and will keep you informed. Knowledge is our power. If you feel you are not getting the information you need - about everything, meds, chemo, etc. - be assertive. A good medical facility has a good administration, and don't be afraid to ask to speak to the nursing administrator, etc. if you feel you aren't getting what you need to feel empowered.

    My oncologist is referring me to another facility to learn about stem cell transplants, too. I will have that appointment after this cycle. I am a good candidate because none of my lymph nodes were lit up in last week's PET scan. Actually, one of my questions of my doctor was, how do I know I still have cancer? There is no way to answer that question, and I am wondering what others think about that. How do we know when we are healed, other than accepting the answers from our oncologist?

    If I continue where I'm at, I will complete a total of 8 cycles. My first hospital stay was 32 days, because my counts wouldn't stabilize enough to allow me to go home for more than a one day pass. After cycle two, I spent two weeks at home, and you need to make sure someone is there to help you because you will be tired. A strong support system is important.

     

    I hope your chemo is going well. Reach out if you find it helpful. I just realized you're two weeks into it. Bless you.

  • lady_linda
    lady_linda Member Posts: 3
    rainey54 said:

    I was given a stage 4

    I was given a stage 4 diagnosis July 2015.  I am a 60 year old female and I experience no symptoms and am very fit and active.  My neck has lumps on both sides but nothing else is obvious.  The oncologist approved a wait and see treatment since there are no changes at this time.  I am at a higher stage because there is a low percentage of mantle cells in my bone marrow.  I will have more blood tests and follow up at the end of November.  My hope is that I can go on for a long time without treatment.  Has anyone heard of or experienced longer term survival without treatment?

     

    First, hope you are doing

    First, hope you are doing well. Second, I'm wondering the same thing. Having lots of questions about. quality of life, survival, Does anyone know people who chose an alternative way, and how they are doing? Other support lines? I am in search of information. I, too am a 60 year old female. Really want to get on with the rest of my life, whatever that is. Thank you.

  • lindary
    lindary Member Posts: 711 Member

    Cycle 3

    I am starting cycle 3 this morning. Expect that you are in good care, that staff knows and will keep you informed. Knowledge is our power. If you feel you are not getting the information you need - about everything, meds, chemo, etc. - be assertive. A good medical facility has a good administration, and don't be afraid to ask to speak to the nursing administrator, etc. if you feel you aren't getting what you need to feel empowered.

    My oncologist is referring me to another facility to learn about stem cell transplants, too. I will have that appointment after this cycle. I am a good candidate because none of my lymph nodes were lit up in last week's PET scan. Actually, one of my questions of my doctor was, how do I know I still have cancer? There is no way to answer that question, and I am wondering what others think about that. How do we know when we are healed, other than accepting the answers from our oncologist?

    If I continue where I'm at, I will complete a total of 8 cycles. My first hospital stay was 32 days, because my counts wouldn't stabilize enough to allow me to go home for more than a one day pass. After cycle two, I spent two weeks at home, and you need to make sure someone is there to help you because you will be tired. A strong support system is important.

     

    I hope your chemo is going well. Reach out if you find it helpful. I just realized you're two weeks into it. Bless you.

    stem Cell

    After my last chem the CT & PT scans both came back clean. Bone marrow biopsy came back with some cells they initially said were lymphoma. I started the meetings to prepare for the stem cell procedure. We had a timeline set, meds ordered to increase t-cell creation. The day before I was to start the meds I got a call they putting it all on hold and I needed to meet with the dr. What happened was there was a bone marrow test that took longer than the others to complete. It had just come back and it showed that the abnormal cells were of a type that could turn into an aggressive cancer. That means they cannot use my t-cells for stem cell. We are now in process of looking for a donor and the procedure wll be re-scheduled for some time early 2016. That good news is that I am in remission from my lymphoma.

  • rainey54
    rainey54 Member Posts: 3
    stem cell transplant

    I am in the midst of my chemo and am scheduled for a stem cell transplant mid November.  I am feeling hesitant but am informed that I could be fine for up to 10 years if I go through with it.  Can anyone share their experience of the transplant, recovery time, and if they can resume to the life that they had before?

  • Mary83
    Mary83 Member Posts: 1
    edited July 2016 #106
    jeni mn said:

    Stem Cell Transplant - Mantel Cell

    My dad, at age 72, recieved a stem sell transplant.  It saved his life.  I highly recommend the Mayo Clinic.  I'm so sorry for your diagnosis but you need to take charge and be aggressive to save your life. Please keep me posted.  God's peace.  I will pray for you.

    Was your dad in complete

    Was your dad in complete remission before the stem cell transplant? My mother was diagnosed with mantle cell stage 2 5 months ago. She just finished her 5th treatment (Nordic protocol) but the ct scan still showed cancer. The doctor told us to still go for the transplant- but I just don't get it, the body stills create cancer- how can a transplant work then? we are so sceared as we thought she had good prognosis after the staging..has anyone experiences anything similar? 

  • lindary
    lindary Member Posts: 711 Member
    Mary83 said:

    Was your dad in complete

    Was your dad in complete remission before the stem cell transplant? My mother was diagnosed with mantle cell stage 2 5 months ago. She just finished her 5th treatment (Nordic protocol) but the ct scan still showed cancer. The doctor told us to still go for the transplant- but I just don't get it, the body stills create cancer- how can a transplant work then? we are so sceared as we thought she had good prognosis after the staging..has anyone experiences anything similar? 

    SCT

    As it was once explained to me, Lymphoma is cancer in the lymph system. Stem Cell uses the Stem Cells harvested from the bone marrow. As long as there is no sign of cancer in the bone marrow the Drs will plan on using the patient's own stem cell for the transplant. 

  • dave smith
    dave smith Member Posts: 4
    edited November 2016 #108
    grannyx4 said:

    mantle cell
    My son (31) was diagnosed the end of July 09 with Mantle Cell. What a blow. I had
    been telling Chris for almost 3 years that he needed to go get the lumps on his neck
    checked. I guess ignorance is bliss in his mind. But finally after my constant nagging,
    he went. Before the biopsy, they told him he had cancer. The biopsy confirmed the mantle cell. Immediately, he was accepted at Memorial Sloan Kettering in NYC. We live in Orange
    and Ulster County in New York. Their regime for treatment is to start with R-CHOP for two
    months, RICE for about 5 weeks. Currently he is in the hospital starting chemo (BEAM)
    in preparation for the stem cell transplant. That is scheduled for late next week.
    From what the onc's here say, they believe that the most aggressive treatment up front
    can get a longer remission. I hope that they are right. Thankfully, he was able to
    do everything (work related) with a few days here and there which were a little rough.
    There were some side effects from the chemo. Hopefully they will not be permanent.
    Good Luck and many Blessings. If there is anything I can do for you, please don't hesitate
    to ask.

    looking for any info or help

    Hi I was diaagnosed with MCL this year had 6 rounds of chemo and I am in remission. They say I am a good canidate for a SCT.

    I was wanting to knoow how your son is doing after his.I hope is doing well.I Am trying to get as much info it is a big decision Whether to wait and see,doa rituxin maintenace every 3 months or do SCT for long term. If you can give me any info it would be greatly appreciated.Thaanks Dave

  • dave smith
    dave smith Member Posts: 4
    illead said:

    Our MCL story

    Hi ggl,

         Hope you are monitoring this site.  We are so sorry for your diagnosis but want to reassure you that there is a real basis for hope.  My husband was diagnosed in July '11.  He was also at Stage IV.  His rbc was 1.6 and his bone marrow was 90% packed with MCL.  He was dying.  He had a fairly new drug bendamustine with Rituxin.  Also called Treanda.  Benda was developed in Germany behind the iron curtain (don't know what they used it for) and just recently it has been used for MCL and even more recently here in the states.  Do some research on it, it is a life saver.  Due to my husband's health situation, they only gave him 1/2 dose of the chemo. This was in Aug '11.   He rallied after that one one treatment.  From then on he received 3/4 dose every 3 weeks.  We asked the doc why not up it to 100% dose since he was better and he said "Why rock the boat, since you are doing so well?"  He finished his last chemo in Feb '12.  and is on a 2 yr Rituxan maint every 2 months.  He just had his 2nd CT scan and is in complete remission.  It will be a year in Feb.  He feels better than he has in a few years.  They figure he had it for a long time before diagnosis.  Please talk to your doctor about the bendamustine/rit.  My husband had no side effects from it and no hair loss.  He was just a little extra tired about the 4th day after his chemo and would take a long nap but no nausea or anything.  They are doing a lot of research on NHL and MCL in Germany and we even emailed some doctors there and they tell us there is a lot more on the horizon.  They also reassured us that at the moment we have everything in the states that they have in Germany.  Like I said, please research bendamustine and Rituxin and also research it on this site, there are some encouraging stories about these wonderful drugs.  I will monitor this particular site if you have any other questions.  Please be assured of our concern and well wishes for you.  You are not alone in this battle.  Bill and Becky

    MCL info

    Hi I was diagnosed earlier this year with MCL.I did 6 rounds of chemo and i am in full remission.I had MCL stage 3 They say I can wait and watch, do Rituxin evry 3 months for 2 years,or I would be a ecellent canandate for a stem cell transplant. I hoping  your husband is doing well. Any info greatly appreciated.

  • dave smith
    dave smith Member Posts: 4
    edited November 2016 #110
    GDM said:

    My husband has been recently
    My husband has been recently diagnosed with Mantel Cell and is receiving Hyper CVad and they are now sending us to see about stem cell transplant as well. He is a 59 year old and very healtly guy otherwise and never sick. How have you done with the stem cell? We are just learning all that is involved and must say a little un-nerved. He has completed cyle 2A and will ge going back in for for 2B in another week. His early scans (done last week) look promising and I want to grab every oppurtunity to keep this in remission. How do you think the stem cell helped you. Any words would be greatly appreciated!

    God Bless.

    How do you think the stem cell helped you. Any words would be g

    Hi I was diagnosed earlier this year with MCL stage 3 . I was hoping to see if you could give me any hope or input on getting a stem cell transplant. Thanks so much with any info. Dave

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    edited November 2016 #111

    MCL info

    Hi I was diagnosed earlier this year with MCL.I did 6 rounds of chemo and i am in full remission.I had MCL stage 3 They say I can wait and watch, do Rituxin evry 3 months for 2 years,or I would be a ecellent canandate for a stem cell transplant. I hoping  your husband is doing well. Any info greatly appreciated.

    Email

    Dave,

    You might get a quicker response if you email Becky with the CSN Email function directly for an update. As a close friend, I know she does not mind MCL patients doing so.

    max

  • SDB4SCB
    SDB4SCB Member Posts: 1
    edited December 2016 #112
    Newly dx MCL

    My husband 46 yr old received pathology report today - MCL, all I read is rare and poor prognosis. Very scared...Waiting on treatment plan. 

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    SDB4SCB said:

    Newly dx MCL

    My husband 46 yr old received pathology report today - MCL, all I read is rare and poor prognosis. Very scared...Waiting on treatment plan. 

    "Who ya gonna call ?"

    SDB4SCB,

    Email Becky (screen name illead).  She is the go-to person for MCL here.  The prognosis for MCL is much less poor than it was just a few years ago. You're docs info may be a little dated; there are several new drugs that now beat what was not beatable until they were released.  Do not accept a treatment plan until you speak with her.

    max

  • illead
    illead Member Posts: 880 Member

    "Who ya gonna call ?"

    SDB4SCB,

    Email Becky (screen name illead).  She is the go-to person for MCL here.  The prognosis for MCL is much less poor than it was just a few years ago. You're docs info may be a little dated; there are several new drugs that now beat what was not beatable until they were released.  Do not accept a treatment plan until you speak with her.

    max

    Hi

    I'm sorry I didn't get right back to you, I just read your post last nite.  I want to reassure you that what you are reading on the internet is old information and there is so much progress and good things happening with treatments and longlasting remissions and a very real hope for a cure.  Yes my husband has MCL, he was diagnosed in July '11.  At that time, they had a fairly new chemo that they gave him.  He immediately went into remission, in Feb '14, he relapsed and was sent to Stanford.  He was put on a target drug just released for MCL relapse only.  He went right back into remission and remains in remission today.  I tell you this short version to show that there is so much hope.  There are lots of clinical trials going on now and the researchers are very encouraged.  It would be so beneficial if you could see an MCL expert before starting any treatment.  Where are you located if you don't mind my asking?  To name a few there is Dr. Michael Wang at MD Anderson Houston ( my 1st choice) but they are all very dedicated and knowledgeable, Dr Andre Goy, Hackensack NJ, Dr Leonard and others Weill Cornell NY, Dr Brad Kahl, Washington U St Louis, Dr Advani, Stanford (who my husband went to).  I am trying to make this short but you can private message me by clicking on my picture or going to CSN email (top left brown box)  Also check out the LRF Lymphoma Research Foundation, there is a lot of info about MCL.  You can also google these doctors I mentioned and put MCL after their names.  I know exactly how you feel, I have been there, please be assured that I am here for you and will monitor this site (which I normally do) throughout each day.  Please ask any questions, I will private message you this info also.  I am hoping this calms your fears a little and gives you and your husband some hope because it is real.

    My thoughts are with you as are Bill's,

    Becky and Bill        PS.  If you want to continue on this discussion board, I would suggest you start a new thread, this one is old and takes awhile to get through to the newer posts.  Just click on "add new forum topic"  I would do it but it may confuse you.

  • Wroberts64
    Wroberts64 Member Posts: 2
    SDB4SCB said:

    Newly dx MCL

    My husband 46 yr old received pathology report today - MCL, all I read is rare and poor prognosis. Very scared...Waiting on treatment plan. 

    MCL treatment

    i was diagnosed with MCL 4/10 and was given a prognosis of 5 years. I had no symptoms at the time and after changing oncologists we decided to watch and wait. I moved to Florida in 2011 and went to the Mayo Clinic where we watched it until 4/12. At that point my WBC was 116,000. They wanted to do treatment with R-CHOP and stem cell transplant. Since I lived 3 hours away they suggested I find another oncologist. I settled on Moffitt because Dr Shah specialized in this disease. He was in the midst of a trial and said I was a good candidate for it. It did not involve chemo. I asked him if it didn't work could I still do chemo and he said yes. When I started the trial, which was rituxin and lenolidimide, my WBC was 142,000. After one week the WBC was 18,000 and the next week 4500. After the second week I had a server reaction to rituxin in the form of TLS and peripheral endema for which I as hospitalized for 4 days. I couldn't move anything without it hurting. It was so bad they had to use a hydraulic lift to get me out of the infusion chair. during the next few months I had a rash, pustule, and a blood clot in my lung. They treated the endema with steroids and the blood clot with Fragmin. After the first three months i got better and by 2/13 I had a complete response (CR). I have been on rituxin maintenance since 5/12 every two months. They give me steroids and Benadryl for the side effects. Other than blood sugar over 300 for a day (type II diabetic and yes I take insulin) I am fine and doing everything I want to do. 7 years and counting. 

    Thoughts, teaching hospitals are great and Moffitt, Dr Bijal Shah in particula, is wonderful. 

    One additional note, my MCL was mostly in the blood and bone marrow with very little lymph node involvement.  Dr Shah indicated that he felt chemo would not have help my particular form of the disease. 

  • ingridhuang
    ingridhuang Member Posts: 1
    Hulsy said:

    Treatment
    In July 2009 I was diagnosed with stage IV Mantle Cell Lymphoma. I had very toxic treatment....kind of a combination of hyper C vad and R chop followed by autologous stem cell transplant in March 2010. I am feeling ok, but am nervous for my next round of PET/CT scans next month. I was told I received the latest in treatment available for MCL and to go and live my life....so I am, but it is hard to 'shake off' the fear of relapse.

    I had 6 treatments, each one week long in the hospital in our city, over 7 mos. I got through it day by day and was told by dr. not to be looking at MCL articles on internet as treatment and outcomes were changing rapidly and a lot of the info out there is negative and outdated. My stem cell transplant was done at a hospital on the other side of our state (Michigan)

    So, I went forward with positive thoughts and got through the treatment. Looking back, yes it was bad and I was very sick. But through the grace of God I got through it. Positive outlook, sense of humor and prayerful support of friends and family really helped.

    I wish your husband best of luck. It is a journey to be sure and there really are 'gifts' along the way....the appreciation of every moment of your life intensifies.

    It is hard dealing with the initial shock...it helped me to talk to someone who had gone through it. It took me four times to get the courage to contact this person because I was unsure of what to ask....but the conversation was so helpful! When had to go through the same thing, I remembered what this friend told me.

    Also, we have a wonderful resource/support center through a 'Gilda's Club' in our city. The support groups for family and caregivers were wonderful. Wish I could be there for a cup of tea and discussion with you.

    You can get through this.

    In prayerful support.
    G

    How are you doing now?

    .

  • illead
    illead Member Posts: 880 Member
    edited February 2017 #117
    Hello

    I'm sorry I haven't written, My husband and I are actually  evacuated we live 25 miles from Oroville Dam. Although they have lifted the evacuation order, we are not going to trust anything until this next round of storms passes. Your story is very encouraging since the year you were diagnosed there was not much out there for MCL patients. You were very fortunate to be put in that trial, of course I know you know that too. You must have read our story and know we are very fortunate also. Thank you so much for sharing. You might want to start a new post as this one is very long and outdated, you may get lost in the shuffle. BTW, my husband also had his MCL in his  blood and bone marrow only, no lymph involvement. I wish the best for you and a long healthy life.

    Becky

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    edited February 2017 #118
    illead said:

    Hello

    I'm sorry I haven't written, My husband and I are actually  evacuated we live 25 miles from Oroville Dam. Although they have lifted the evacuation order, we are not going to trust anything until this next round of storms passes. Your story is very encouraging since the year you were diagnosed there was not much out there for MCL patients. You were very fortunate to be put in that trial, of course I know you know that too. You must have read our story and know we are very fortunate also. Thank you so much for sharing. You might want to start a new post as this one is very long and outdated, you may get lost in the shuffle. BTW, my husband also had his MCL in his  blood and bone marrow only, no lymph involvement. I wish the best for you and a long healthy life.

    Becky

     

    Dam !

    I was hoping to hear from you Becky, since I know you live "downstream."

    What a difference two years make, but thankfully the severe droughts in California are now over.

    I recall in the 80s in Charleston when I was in the Navy. About 20 miles upstream from the base on the Cooper River, the dam that forms Lake Moultry was at risk to fail, and all ships were on alert to put to sea if necessary, but the order never came fortunately, and today the dam is reportedly safe.

    Please update when you get safely back home,

    max

    .

  • lindary
    lindary Member Posts: 711 Member
    edited February 2017 #119
    Dam ??????

    Becky, I just read how they were trying to keep the water low in the lake to relieve pressure on the dam. I do hope for everyone that lives in the area that works. I hope they can fix the dam too. 

  • Bob s
    Bob s Member Posts: 1
    edited April 2017 #120
    illead said:

    Hi

    I'm sorry I didn't get right back to you, I just read your post last nite.  I want to reassure you that what you are reading on the internet is old information and there is so much progress and good things happening with treatments and longlasting remissions and a very real hope for a cure.  Yes my husband has MCL, he was diagnosed in July '11.  At that time, they had a fairly new chemo that they gave him.  He immediately went into remission, in Feb '14, he relapsed and was sent to Stanford.  He was put on a target drug just released for MCL relapse only.  He went right back into remission and remains in remission today.  I tell you this short version to show that there is so much hope.  There are lots of clinical trials going on now and the researchers are very encouraged.  It would be so beneficial if you could see an MCL expert before starting any treatment.  Where are you located if you don't mind my asking?  To name a few there is Dr. Michael Wang at MD Anderson Houston ( my 1st choice) but they are all very dedicated and knowledgeable, Dr Andre Goy, Hackensack NJ, Dr Leonard and others Weill Cornell NY, Dr Brad Kahl, Washington U St Louis, Dr Advani, Stanford (who my husband went to).  I am trying to make this short but you can private message me by clicking on my picture or going to CSN email (top left brown box)  Also check out the LRF Lymphoma Research Foundation, there is a lot of info about MCL.  You can also google these doctors I mentioned and put MCL after their names.  I know exactly how you feel, I have been there, please be assured that I am here for you and will monitor this site (which I normally do) throughout each day.  Please ask any questions, I will private message you this info also.  I am hoping this calms your fears a little and gives you and your husband some hope because it is real.

    My thoughts are with you as are Bill's,

    Becky and Bill        PS.  If you want to continue on this discussion board, I would suggest you start a new thread, this one is old and takes awhile to get through to the newer posts.  Just click on "add new forum topic"  I would do it but it may confuse you.

    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

  • vanderhe
    vanderhe 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

    MCL

    Hi Bob,

    I to have MCL, was diagnosed in May of 2015. It seems like just yesterday. My treatment was 3 cycles of R-DHAP and 3 cycles of R-CHOP, alternating. It was succesful, am in remission. My oncologist recommended an autologous stem cell transplant. I met with the transplant team at Stanford Medical Center. I decided to not do the transplant, frankly I felt I had just been through enough. My doctor did say that if the cancer returns, I could still do the transplant. The way I got through it all was indeed one step at a time. Before my chemo, the doctor said there was no need to think about the transplant until later. It was good advice.

    Take Care,

    Randy