Mantle cell lymphoma - need survivor stories

12357

Comments

  • Susanpreefer65
    Susanpreefer65 Member Posts: 3
    udnic1228 said:

    unremitting- nyc docs?

    HI-

    I think our situations are failry similar and we are seeking the best care for my mother, who was diagnosed with lymphoma on Oct 5, but the dx came back as mantle cell about a month ago. She just recently went back for additional blood work, and only upon complaining about her arm (after I made her tell the dr) they ordered a Pet scan at sloan, and the results came back today that there is " active uptake" in her arm, the lesion still on her colon, and an additional lesion as shown from an MRI behind her eye ( but perhaps not related to any lymphoma).  They are still waiting and watching and it doesn't feel right to me, so I am on here looking for advice since I am very new to this.

    I am thinking about a second opinion at hackensack with Dr. Goy ( she currently got dx at Sloan with Dr. Portlock) , or even Cornell with Leonard.  Have you decided where to go yet?  Do you have any updates on how you guys are doing?  

     

    I am sending prayers to you!

    Nicole

    Goy

    Nicole,

    DON'T THINK - GO TO GOY!!!!!!

  • jlroeper
    jlroeper Member Posts: 1
    mantle cell lymphoma survival

    My husband was first diagnosed with MCL in April 1996 at the age of 25. At that time, they didn't have the specific name of mantle cell. He underwent CHOP, which did not work, so it was decided he would have an autologous stem cell transplant. Before we were sent for the transplant,  he received a two treatments pf DHAP. He had his transplant in March 1997. At the time, there was a study going on with Interleukin 2, and he was randomly selected to receive that drug. He ended up in remission until November 2002. At that point, the doctors decided to do treatments using Rituxin. They did nothing for him, so then we were sent for a mini nonmyeoablative donor transplant in Seattle. He was medically retired from the Army after he went through his first transplant, so we were at the Seattle VA for his second transplant. He received 2 treatments of chemo when we were first in Seattle,  due to his cancer load being too much for transplant. I honestly can't remember what he was given at that time, but I believe it was CHOP. Then, he had his transplant in August 2003. His donor was non related and a partial mismatch. It is now 11 1/2 years later, and he is still in remission. The effects from allof the chemo and radiation have been tough. He has had to have both hips and a shoulder replaced, and he started suffering from congestion heart failure a few years ago, due to Adriamyacin. However, we weren't sure he would get to see his kids grow up, and now he is 44, and we are expecting our first granddaughter in a few months. I just wanted to offer some hope to those of you with MCL. 

  • Kevint
    Kevint Member Posts: 1
    Hi Eeyora,How is your husband?

    Hi Eeyora,

    How is your husband? Hope the treatment is a success? 

    Actually my dad just being diagnosed with mantle cell lymphoma. His hopes n spirit is high. 

    Hope you can share. 

    Thanks you

     

  • Dmill15236
    Dmill15236 Member Posts: 2

    mantle cell
    Hello, I had been diagnosed with mantle cell too. I live in PA and am 48 male, single and eat a healty diet. I found a lump on my neck back in June and seen my dr whom told me it was most likey nothing to worry about, three months later I was in to see a ear,nose,throat sp and he did a biopsy and gave me the news of it being a lymphoma, non-hod. Than I was referred to an onc whom at first glance thaough it was a "regular type indolent" type but further tests concluded it was mantle cell. The specilists I have seen told me that this type of cancer can be both indolent or agressive and luckly mine is on the indolent side. I am just now deciding which route is best to take at this time. I am presented with a lower toxicity chemo plan or the heavy in hospital chemo with a stem cell transplant. The one Dr. is very confident he can "cure" me with this treatment.

    I hope you are doing well and will write me of your experiances. You can contact me here or via my e-mail at [email protected]

    God Bless and Best Wishes

    What to expect

    my dad was diagnosed with mantle cell lymphoma about 3-4 weeks ago. He just started chemo this week...maxi chop with high dose cytarabin. He's supposed to have 6 cycles 21 days apart followed by an auto cell transplan. I was just curious how your treatment was? My dad is scared to death and I'm trying to find survivors for him to talk to. We're in pittsburgh and he's being treated at hillman cancer center. 

  • illead
    illead Member Posts: 881 Member

    What to expect

    my dad was diagnosed with mantle cell lymphoma about 3-4 weeks ago. He just started chemo this week...maxi chop with high dose cytarabin. He's supposed to have 6 cycles 21 days apart followed by an auto cell transplan. I was just curious how your treatment was? My dad is scared to death and I'm trying to find survivors for him to talk to. We're in pittsburgh and he's being treated at hillman cancer center. 

    Hi Dmill

    Welcome to our forum.  I know how scary it is to be diagnosed with MCL.  My husband Bill was diagnosed in July '11.  He was in complete remission after chemo but relapsed 2 yrs. later Feb "13.  He is on a new target drug Ibrutinib that was released only for MCL in Nov. '12.  You can read more about his story by clicking on our picture.  Please know that they have come a long way in the research of MCL and it is not near as ominous as it was before.  He has been back in remission since taking the Ibrutinib (4 pills/day).  There is another man Joe, who I have been messaging privately to, he was also facing an SCT but he went to MD Anderson in Houston to Dr. Michael Wang who was a main researcher for Ibrutinib.  Joe is going to start in a brand new clinical trial which will use Ibrutinib as a first line treatment along with Rituxan followed by a stronger chemo HCVAD.  They are very excited about this and Dr. Wang told Joe he does not suggest an SCT and he is a big proponent of them.  We have spoken to 3 other MCL researchers (2 in Germany) who also suggest not.  I am just the bearer of information and by no means not an expert.  I want you and your father to know though that there is a lot of hope now for MCL and tons of research going on, so your father may want to get a 2nd opinion or at least have his oncologist confer with some other more experienced oncologists with MCL.  A couple other names I know are Dr. Brad Kahl Carbone Cancer Center/Univ of Wisconsin and Dr Andre Goy, New Jersey.  I hope this helps.  Also, as you may note, you have posted on an old thread, so it would be better if you start a new one as it is a little difficult to find you on this one.  Again don't lose hope, we are very encouraged and able to go on with our life.

    Our best to you and your father and family,  Bill & Becky

  • willow55
    willow55 Member Posts: 8

    mantle cell
    I was just diagnosed with mantle cell on 2/8/2010. Had my first RCHOP21 on 2/12 and will be doing 6 cycles with a stem cell transplant a possibility later on. I am a 61 y/o female and had symptoms of slight fatigue and shortness of breath. During the holidays 2 bruises showed up on my arm and leg. Since childhood asthma resurfaced in early 2009 I thought the symptoms other than the bruising was related to the asthma.

    My blood work came back bad and after many tests, including a bone marrow biopsy, I was diagnosed with stage4 mantle cell with a lot of the disease in my bone marrow.

    Doctors are upbeat, my side effects from the first treatment were minimal and I am trying to be as positive as I can be.

    I am a female with MCL

    I am hoping you monitor this situe and can update me on your story.  I was diagnosed last month and being a female with MCL is lonely.  I've had one round of treatment (bendamustine and rituximab) and will have five more, then a stem cell transplant. 

     

    Thank you for sharing,

  • willow55
    willow55 Member Posts: 8
    Hulsy said:

    GDM
    I'm female and coming up to my one year anniversary since the stem cell transplant. I also did the HyperCVad. Had trouble in round 4 with neuropathy from the vincristine. They stopped vincristine and neuropathy did go away. Also had to battle pneumonia...that was worse than the chemo experience.

    The SCT went well, I think it was actually easier than the 6 rounds of chemo. It sounds like a huge thing, but the actual process of the transplant was okay. My 6 mos. PET/CT scans were clear...looking forward to more good results next month. I'd be happy to talk more about it with you if we could get in contact. It helped me greatly to talk to someone who went through similar treatment prior to my ordeal...she had stage 2, mine was stage 4....the journey and rallying was similar. I was 60 when diagnosed in July 2009. I never thought I would ever feel as good as I do now. It is a new normal and I have to take some rests during the day...but each day is a blessing.

    Prayers and positive outlook work wonders.

    hulsy

    Female with MCL

    I am hoping you monitor this site and can update me on your situation.

     

    I was diagnoised last month - I'm a 59 year old woman.  I've had one round of chemo, with 5  more scheduled and then a stem cell transplant.  That part of treatment scares me a lot.  I am having bendamustine + rituximab, a newly adopted standard-of-care for the province of British Columbia, where I live.  The one cycle was well tolerated and I'm hoping the rest will be ok too.

     

     

  • willow55
    willow55 Member Posts: 8
    lsk1000 said:

    MCL In Remission
    I was 59 when diagnosed in October 2007. Today I am felling well and doing fine. Since I was treated at the Dana-Farber Cancer Clinic in Boston, (one of the best in the world) by the director of the hemotology oncology department. Dr. Arnold Freedman (also one lf the best in the world) I believe my treatment can be looked upon as a classic example of how to approach MCL. Of course no two people are alike, nor is their illness.
    For what its worth here is my story.

    Cancer was stage 3 and slow growing. We waited 3 years before treatment as I was asymtomatic except for enlarged lymph nodes.
    Treatment began with R-CHOP, less toxic than Hyper-CVAD, although duxorubicin can effect the heart years later. After 4 chemo infusions the rate of apotosis (cell death) as 35%. My Dr. was underwhelmed with that apototic rate so he switched me to a chemo developed in Germany called Benfamustine + R (Rituximab). Bendamustine is not a very well known drug. I urge everyone to take note and inform your doctor. That switch in treatment protocol saved my life. The response rate to new chemo was 100% after 4 treatments, with one more for good measure. I was in remission. No nausea or hair loss during chemo.

    Next was autologus stem cell transplant. Dr. Freedman was very emphatic. The transplant offers the best chance for the longest and most durable remission. Who was I to object? And what if in 2-3 years I relapsed and wondered what if I had the transplant? The worst 20 days of my life, but worth every agonizing moment. Delerious, nausea, weight loss, didnt eat or drink anything for 2 straight weeks. But I survived. It was emotional coming home. My wife was an angel. (Cant do this without an angel.) My hair grew back, my toothpick arms amd matchstick legs grew muscle.
    I'm alive and other than lack of stamina I am back to pre-diagnosis health. I pray anyone reading this has equally good fortune.

    MCL - Bendamustine and Rituximab

    I am newly diagnosed with MCL and have had one round of B+R with five more to come.  The first cycle was well tolerated.  The stem cell transplant idea scares me a lot, but my doctor is adamant I should do it.  My daughter has done a ton of research on MCL and also insists on it.  She has a one year old little girl and I want to be around as long as possible for her.

     

    I am having a hard time thinking about or into the future.  I am afraid to make plans.  I had two trips booked that look like they'll need to be cancelled. 

     

    Can you give me your view on planning, looking to the future?

  • willow55
    willow55 Member Posts: 8
    gab-mary said:

    Rare Bird too !
    Hi Rare Bird,
    My name is Gabrielle, I'm a 50 yr old female and I'm from Australia. I was diagnosed on 9/3/11 ( My Wedding Anniversary ) with having Lymphoma. After an op on my right groin to remove a 3cm lymph node and further testing I was told it was Mantle cell stage 2. It's on both sides of the groin and a small cluster in my bone marrow. It is looking to be slow moving at the moment. The Dr has ordered more testing to make sure the aggressiveness of it and there will also be a team meeting to discuss my treatment. I find out on 29/4/11, hoping and praying for the best outcome.

    Cheers Gabrielle

    MCL and female

    I have just been diagnosed with MCL (I'm in Canada).  I am 59 years old.  I just started chemotherapy.  I will have 6 rounds of Bendamustine and Rituximab and then a stem cell transplant.  I am terrified by the whole process but I am focussed and determined to get through this doing all I can to fight this. 

  • willow55
    willow55 Member Posts: 8
    udnic1228 said:

    ny doctors

    HI,

     My name is Nicole and my mother (65, not in the best shape) just got diagnosed with mantle cell at Memorial Sloan.  This was after our community doctor ( Westchester COunty, NY ) ran the first tests because her white blood count was high but just gave the cancer " inconclusinve" for its origins.  Sloan diagnosed her with mantle cell.  We are not going to a specific " mantle cell  specialist " at this point and it worries me ( internet is a blessing and a curse).  Right now they are waiting and watching.  She has involvement in her bone marrow but not yet in her lymph nodes, and a spot on her colon.  Have you found in your research in NY/NJ any doctors that treat this more aggressivley and do not take the " wait and watch" approach?  I know you are knew to this too, but I am hoping you might have had some luck with any doctors you have come across.

     

    My best wishes to your husband on a journey that is quick, and my prayers to you as a fellow caretaker.

    Best,

    Nicole 

    I am a female with MCL

    Hello - I am hoping your mom continues to be ok.  I am 59 years old and just diagnosed with MCL.  I started chemo last week (it will be 6 rounds of two days of Bendmustine and Rituximab) and then a stem cell transplant. 

  • willow55
    willow55 Member Posts: 8
    jlroeper said:

    mantle cell lymphoma survival

    My husband was first diagnosed with MCL in April 1996 at the age of 25. At that time, they didn't have the specific name of mantle cell. He underwent CHOP, which did not work, so it was decided he would have an autologous stem cell transplant. Before we were sent for the transplant,  he received a two treatments pf DHAP. He had his transplant in March 1997. At the time, there was a study going on with Interleukin 2, and he was randomly selected to receive that drug. He ended up in remission until November 2002. At that point, the doctors decided to do treatments using Rituxin. They did nothing for him, so then we were sent for a mini nonmyeoablative donor transplant in Seattle. He was medically retired from the Army after he went through his first transplant, so we were at the Seattle VA for his second transplant. He received 2 treatments of chemo when we were first in Seattle,  due to his cancer load being too much for transplant. I honestly can't remember what he was given at that time, but I believe it was CHOP. Then, he had his transplant in August 2003. His donor was non related and a partial mismatch. It is now 11 1/2 years later, and he is still in remission. The effects from allof the chemo and radiation have been tough. He has had to have both hips and a shoulder replaced, and he started suffering from congestion heart failure a few years ago, due to Adriamyacin. However, we weren't sure he would get to see his kids grow up, and now he is 44, and we are expecting our first granddaughter in a few months. I just wanted to offer some hope to those of you with MCL. 

    Just diagnosed with MCL

    Thank you for sharing your story.  I am shocked your husband was so young when he was diagnosed.  I got the news last month.  I am a 59 year old woman and have had one round of chemo and will have five more (Bendamustine + Rituximab) then a stem cell transplant from my own supply.  I am terrified of it all, but am determined to do what it takes.  I have a one year old granddaughter and she is the light of my life.

     

     

  • grannyx4
    grannyx4 Member Posts: 9
    how is your husband doing? 

    how is your husband doing?  and how are your little ones???

  • Dianna2013
    Dianna2013 Member Posts: 15
    willow55 said:

    I am a female with MCL

    Hello - I am hoping your mom continues to be ok.  I am 59 years old and just diagnosed with MCL.  I started chemo last week (it will be 6 rounds of two days of Bendmustine and Rituximab) and then a stem cell transplant. 

    MCL/Female

    Hi Willow,

    I was diagnosed with MCL in 2013 @56. I'm currently in remission with two Rituxan treatments remaining. I live in Ohio & am getting treatment through the Cleveland Clinic. You can drop me a note if you'd like. I too was suppose to have the SCT but because of underlying health issues, (quadriplegic) I was no longer a canidate after chemo. They thought I wouldn't survive the transplant. I've been doing Rituxan treatments & a CT every six months.

    Dianna

  • Belle1965
    Belle1965 Member Posts: 2
    2407 said:

    Help to find a good treatment centre
    Hi my dad was diagnosed with mantle cell lymphoma about 4 weeks ago. He is also aged 48 and has never been very ill in his life. He is active and everything else about him is very healthy. We live in London and he is attending a hospital here, however, we are looking for better options in terms of treatment and hopefully a cure.

    He is at stage III it has not reached his organs or bone marrow, it started off in his neck and there is slightly mild high uptake in his inguinal and iliac lymph nodes shown on the PET CT. They want to start him on Cyclophosphamide, Doxorubicin, vincristine and steroids. From what I know hospitals in the USA are better for treating this type of cancer. And from all the stories I hear hyperCVAD is best for treating this. As well as a stem cell transplant.

    They have decided to start the treatment in 3 weeks, which I feel is too long a wait, and I'm not sure this is the best chemo combination.

    As We live in the UK we don't know much about Hospitals in America, so please please please could the survivors of mantle cell lymphoma recommend a few good hospitals and doctors to look into. We are desperately trying to find new options as I feel this cancer can be cured. He has 5 children the youngest being 20 months old, we don't want to lose him. He is strong and healthy and I feel no matter what the side affects are he can overcome them.

    American Hospitals

    Hello,

    My brother has just been diagnosed with Mantle Cell Lymphoma and we are considering treatment facilities.  I would encourage you to consider a couple of things.  Cancer Centers of America is well respected and has centers through out America.  If you know a particular are of the USA that you would like to come to then I would consider one of the larger university hospitals.  You want to be at a treatment center that is up to date on the latest protocols.

    Blessings to you and your family!

    Belle

  • rainey54
    rainey54 Member Posts: 3
    willow55 said:

    Female with MCL

    I am hoping you monitor this site and can update me on your situation.

     

    I was diagnoised last month - I'm a 59 year old woman.  I've had one round of chemo, with 5  more scheduled and then a stem cell transplant.  That part of treatment scares me a lot.  I am having bendamustine + rituximab, a newly adopted standard-of-care for the province of British Columbia, where I live.  The one cycle was well tolerated and I'm hoping the rest will be ok too.

     

     

    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?

     

  • jeni mn
    jeni mn Member Posts: 2
    willow55 said:

    MCL - Bendamustine and Rituximab

    I am newly diagnosed with MCL and have had one round of B+R with five more to come.  The first cycle was well tolerated.  The stem cell transplant idea scares me a lot, but my doctor is adamant I should do it.  My daughter has done a ton of research on MCL and also insists on it.  She has a one year old little girl and I want to be around as long as possible for her.

     

    I am having a hard time thinking about or into the future.  I am afraid to make plans.  I had two trips booked that look like they'll need to be cancelled. 

     

    Can you give me your view on planning, looking to the future?

    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.

  • jeni mn
    jeni mn Member Posts: 2
    willow55 said:

    MCL and female

    I have just been diagnosed with MCL (I'm in Canada).  I am 59 years old.  I just started chemotherapy.  I will have 6 rounds of Bendamustine and Rituximab and then a stem cell transplant.  I am terrified by the whole process but I am focussed and determined to get through this doing all I can to fight this. 

    MCL

    I'll pray for you and yes, you can do this.  You can get through the treatment and come out on the other side.  Be strong and be agressive.  My dad had a stem cell transplant at the Mayo clinic and it saved his life.  Get to the best hospital, with the best doctors that you possibly can.  It makes a difference.  God's peace girl.  Take care!

  • pj2015
    pj2015 Member Posts: 7
    willow55 said:

    MCL - Bendamustine and Rituximab

    I am newly diagnosed with MCL and have had one round of B+R with five more to come.  The first cycle was well tolerated.  The stem cell transplant idea scares me a lot, but my doctor is adamant I should do it.  My daughter has done a ton of research on MCL and also insists on it.  She has a one year old little girl and I want to be around as long as possible for her.

     

    I am having a hard time thinking about or into the future.  I am afraid to make plans.  I had two trips booked that look like they'll need to be cancelled. 

     

    Can you give me your view on planning, looking to the future?

    MCL - Bendamustine and Rituximab

    Hope this finds you doing well!

    I will start my first round of chemo Monday November 2, 2015 for six months then transplant.

    Same as you, i want and need to be around for four year old twin grandchildren, one of whom is special needs the other one lives with me and my husband.

  • pj2015
    pj2015 Member Posts: 7
    willow55 said:

    MCL and female

    I have just been diagnosed with MCL (I'm in Canada).  I am 59 years old.  I just started chemotherapy.  I will have 6 rounds of Bendamustine and Rituximab and then a stem cell transplant.  I am terrified by the whole process but I am focussed and determined to get through this doing all I can to fight this. 

    MCL and female

    Will start this coming monday November 2,2015. I will have 6 rounds of Bendamustine and Rituximab and then a stem cell transplant.

    I've just turned 68 yrs old

    Any comments appreciated of what i can expect.

    Most of all, hope you are well!

  • pj2015
    pj2015 Member Posts: 7
    willow55 said:

    Female with MCL

    I am hoping you monitor this site and can update me on your situation.

     

    I was diagnoised last month - I'm a 59 year old woman.  I've had one round of chemo, with 5  more scheduled and then a stem cell transplant.  That part of treatment scares me a lot.  I am having bendamustine + rituximab, a newly adopted standard-of-care for the province of British Columbia, where I live.  The one cycle was well tolerated and I'm hoping the rest will be ok too.

     

     

    MCL and female

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