Mantle cell lymphoma - need survivor stories

  I respect your decision Round 2, but I just want to give you another side to think about.  When Bill was diagnosed with MCL, his bone marrow was 90% packed with cancer, his RBC was 1.6 and his platelets were way low (I can't remember now) and he was near death.  I know many don't understand this but because of our religious beliefs we do not accept blood transfusions, so that was not an option for us.  So you can see that he also was in very poor condition and the doctor was very negative and convinced he would die.  He was given EPO shots to increase his blood counts and also hydrated for over a week before his 1st chemo.  His counts were still low so he was given only 1/2 dose of Bendamustine (Treanda) /Rituxan.  During his chemo, he had a bad spell with the symptoms he had suffered prior.  Rigors and high fever 105.   They had to stop his chemo and our son and I took over because we had dealt with it before.  We got his fever down to 102 and they were able to finish the chemo and let us take him home.  He went right to bed and slept for 2 hours.  When he got up his temp was normal and we could tell that he was starting to recuperate and the chemo was working.  He felt a little better each day.  Another problem tho was that instead of his next chemo being in 3 weeks, the onc drug her feet and he went 5 weeks.  His symptoms were starting to come back.  At his appt. she rudely said "I don't think you are are going into remission and I'm thinking about stopping the chemo."  When we told her Bill was getting symptoms again she immediatly scheduled chemo for the next day (Bill says he knew for the first time that he would die if she stopped the chemo).  Needless to say we were extremely relieved and the last time we saw that oncologist.  He continued chemo as scheduled at 3/4 dose, and is in complete remission a yr. Feb. 6 months after his first chemo.  He had no side effects at all from Bendamustine, not even hair loss.  It is very easy on the body.  We just saw his onc (different one) Thursday and he told us MCL is not near as ominous as it has been in the past.  He even said that if Bill is in remission for long enough they can use Benda again if he relapses.  He emphasized "if" he relapses.  I am so sorry for this long and personal post but I just feel like you shouldn't give up!  Of course this is your decision, but my hope is that you will at least get a second opinion, ideally from a doctor specializing in MCL.  There has to be some other options out there.  I will keep you and your family in my prayers, Becky

GDM said:

2407
My husband was
2407
My husband was diagnosed in early December 2010, we are still trying to get as much info as possible on MCL and are very anxious as I am sure you are. We are involved with Overlook Hospital in Summit, NJ. We were also sent to Hackensack University Medical Center in Hackensack, NJ for second opinions and opinions on stem cell transplant. Both are treating cases of MCL. Keep me posted on your progess and I will do the same. I hope for recovery for all of us.

Hi,

I came across this blog and saw your posting. I live n the area and decided not to go to Overlook and went straight to Hackensack. This is regarding my dad not me. He was just diagnosed with MCL and we are seeing Dr. Goy. Just started the process and will find out his suggested treatment on Monday. I was just wondering how your husband is doing and what treatment he received. 

Thank you for your time. I hope he is doing ok.

Lisa

jimwins said:

I agree

Round 2, I agree with Becky 100%.  It is your decision of course but often when we aren't well and/or are very fatigued, we don't make the best decisions.  A second opinion as she suggests is a good idea.  I am not in your shoes but I have worn similar ones in my journey and like all of us, have "walked the walk" with cancer.  Please know you are supported here no matter what decision you make.  I am thankful you have had 6 years of remission and wish you peace, strength and clarity through this tough time.

Big hearfelt hugs,

Jim

I'm sorry for the things going on with your father.  I know it is very scary for you and your brother.  You can click on illead in the blue area and it will take you to our page.  You can read about Bill and also if you look up at the post above jimwins in this section (two up from this post) you will see some more information.  Please know that they are making very positive headway in treating Mantle cell.  I am hoping that your father's doctors are familiar with MCL.  Of course we are not doctors, so sometimes we have to trust that they are doing the best possible.  I just wonder why he received radiation only when first diagnosed, but I suppose there are different thoughts on MCL and maybe treatment differs where it is located.    Maybe you would want to get a second opinion just for your knowledge.  We are a caring group here Kristie and please feel free to ask us or just to share your feelings or whatever.  We are here for you.  Bill and I know how scary MCL is but we also know that there is real positive hope that it is treatable and even hopefully getting to the point of being curable.  Hang in there and be there for your father and please let us know how things are going, and as I said before, all of us are here for you.  Becky

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.

To Isk1000,

My dads case seems to be similar to yours. How are you doing?

This is my dads case:

My dad was diagnosed with Mantle cell about 5 years ago. He 1st did 40 rounds of radiation where he found his 1st tumour in his lymphnode in his groin ares. Exactly a year later, he found another in his neck and underwent surgery to remove it. They decided to do a round of radiation a year later, since they didn't remove all of it during the surgery. Last spring, they found approx. 6 tumours in his stomach and other areas of his body. They decided to do the 'watch and wait' till about Nov. of 2012 and started R-CHOP chemo once every 3 weeks and had approx 20 rounds. 2 weeks ago, he had a tube-like thing put in his chest to take his stem cells out in a couple of weeks and also in that same week he had intense chemo (not sure what kind) to increase his stems cells and also got neupogen to do the same thing. May 16, he will go into the hospital for 3 weeks. During those three weeks, the 1st week he do 6 days of intense chemo (I'm not sure what kind) and then he will have his own stem cells put back into him.

I hope all is well! Prayers are with you all!

Kristie

angel531 said:

To Isk1000,

My dads case seems to be similar to yours. How are you doing?

This is my dads case:

My dad was diagnosed with Mantle cell about 5 years ago. He 1st did 40 rounds of radiation where he found his 1st tumour in his lymphnode in his groin ares. Exactly a year later, he found another in his neck and underwent surgery to remove it. They decided to do a round of radiation a year later, since they didn't remove all of it during the surgery. Last spring, they found approx. 6 tumours in his stomach and other areas of his body. They decided to do the 'watch and wait' till about Nov. of 2012 and started R-CHOP chemo once every 3 weeks and had approx 20 rounds. 2 weeks ago, he had a tube-like thing put in his chest to take his stem cells out in a couple of weeks and also in that same week he had intense chemo (not sure what kind) to increase his stems cells and also got neupogen to do the same thing. May 16, he will go into the hospital for 3 weeks. During those three weeks, the 1st week he do 6 days of intense chemo (I'm not sure what kind) and then he will have his own stem cells put back into him.

 

I hope all is well! Prayers are with you all!

Kristie

I read your post about your Dad and it kinda reminded me of myself. I was diagnosed at the end of 2009 when I was 50 yrs old. I had 2 tumors around my right eye, one large and one very small. After the biopsy and initial scans, I was told I had a couple more tumors in my throat and they suspected it was in my bone marrow also. I am very fortunate and blessed to be in California and to be treated initially at the City of Hope. The doc there told me that they wanted to treat it very aggessively and that he was confident I would be cured. I told him to "go for it" and I was encouraged. Their approach did not include any operations or radiation, only a lot of chemo. I had 4 rounds of chemo a month apart. Each round was about 4 or 5 days straight of chemo, in a hospital bed. So 4 months of that, then there was a waiting period with some scans and maintenance (out-patient) chemo sessions. After about another month the scans and tests came back clean and the prepared me for a stem cell transplant. Once I was "clean" I wanted them to collect the cells ASAP. I had the transplant at UCLA. I also had the catheter in the chest (after they took the one out of my arm), and the neupogen and some other stuff to increase my cell production. Collecting the cells was problematic and it took a couple weeks longer than anticipated. But then in Aug 2010 I finally started and I was in the hospital for 21 days. I stayed home for about another 6 weeks, then I was back at work full time that October. So this Aug will be 3 years clean.

I don't know where your Dad is being treated and I'm no expert, but if he's "clean" enough for them to gather good stem cells, then I certainly expect after the transplant that he'll be on the road to recovery. Be sure his immune system is in good enough condition to go home before you let them release him. With a weak immune system it's very, very easy to get sick. I know because I got pnemonia a week after my second round of chemo because I went shopping with my wife. I didn't know my immune system was almost wiped out from the chemo. After the stem cell transplant, the doc didn't want me to go outside or pet the dog for at least another month. And one thing super important after going home from the transplant ... drink water, drink water, drink water. The chemo kills fast growing cells, which includes the digestive tract. So when I started eating kinda normally again, I backed up so bad!! I was miserable. During the hospital stays they always had me hooked up to fluids so I got out of the habit of drinking water (besides, I didn't feel like it because of the nausea). Back recovering at home, I wasn't drinking enough and the nurse told me I had become dehydrated.

I hope this helps. Pray, pray, pray (I'm sure you already are!) I will pray for your Dad too; for his success, for his courage to just keep on going, and for peace in your family.

Gene

If you go to the first page of this thread and scroll almost halfway down there are 2 short posts from ggl2013.  In his 2nd post (about 4 down from his first), he says he is going to Dr. Goy.  That is the last post I ever saw from him but he posted privately to us, but I never did hear from him much after that.  You can click on his name in the the blue area to get his info and also can email him privately through CSN (no email addresses exchanged).  You have to create a sign in  first though.  Hope this helps.  We are in CA so do not have any experience with the doctors you speak of.  I have seen Dr. Goy's name in my research however, he seems very notable with MCL.

Becky

unremitting said:

Physician experience for Stage IV MCL in NY

Hello

 

 My husband was recently diagnosed with Mantle Cell Lymphoma Stage IV. He is previously healthy and is 47. We are looking into 4 institutions to undergo treatment and love to hear experience anyone who has had treatments with the followng Dr's, would also love any encouraging stories of patients who are in long term remission from these institutions/Dr's. We live in NY so our plan is to look into Memorial Sloan Kettering (still waiting to see who we will see but would love any tips if you liked working with a perticular doctor there), Dr Goy in Hackensack NJ, Cornell (Dr Leonard) and Roosevelt (Dr Groosbard). We are new to this so would appreciate any info we can get. Feel free to eMail us at perfecthealth1@yahoo.com

Kind Regards, 

It has been a long rough road since getting dx with MCL in March 2012, (will never forget that day)!  But I'm done, finsihed all the chemo, had the Nordic Regimen, a combo of of Maxi-R-Chop and Ara-C.  Then the autologous stem cell transplant.  There were bumps in the road and at times I thought I was going to die for sure.  But all along my doctors thought I would be 'cured'  so I just kept plodding through. 

It has been 6 months since my transplant and I am starting to feel like my old self.  Don't despair, just hang in there, MCL is beatable!  And I never thought I would say this but I am a better person today because of the experience.  Each day I awake with a song of gratitude.

unremitting said:

Physician experience for Stage IV MCL in NY

Hello

 

 My husband was recently diagnosed with Mantle Cell Lymphoma Stage IV. He is previously healthy and is 47. We are looking into 4 institutions to undergo treatment and love to hear experience anyone who has had treatments with the followng Dr's, would also love any encouraging stories of patients who are in long term remission from these institutions/Dr's. We live in NY so our plan is to look into Memorial Sloan Kettering (still waiting to see who we will see but would love any tips if you liked working with a perticular doctor there), Dr Goy in Hackensack NJ, Cornell (Dr Leonard) and Roosevelt (Dr Groosbard). We are new to this so would appreciate any info we can get. Feel free to eMail us at perfecthealth1@yahoo.com

Kind Regards, 

Hi,

I have been undergoing treatment with Dr Goy since July and will finish my last round of chemo shortly. Dr Goy, his team and Hackensack has been an awesome experience or us. I am enrolled in a clinical trail that adds Velcade to Hyper CVAd, the resultw from the trail so far have been very promising. Hackensack and MD Anderson are the only 2 facilities that offer this treatment. I am 47 and was diagnosed ith mantle cell stage IV, multiple enlarged nodes with bone marrow involvement. My nodes have all reduced in isze dramatically and my bone marrow has tested clean. When I first met Dr. Goy he told me that finding a cure for MCl keeps him up at night. I believe him, he is passionate and a bit quirky but we love him and his team.

Best of luck finding the right match for you!

unremitting said:

Thanks Becky for taking the

Thanks Becky for taking the time to reply

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

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 

Hi Nicole,

 Was wondering if it would be possible for your mom to come to N.J and see Dr. Goy?  The John Thauer Cancer Research Center at Hackensack Hospital is only 15 minutes over the GWB.  I cannot swear by this enough. 

Praying for your mom and you. Stay strong!