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Mantle cell lymphoma - need survivor stories

eeyora
Posts: 2
Joined: Jun 2005

My husband (42) has just been diagnosed with mantle cell lymphoma. He will be starting hyper-CVAD with rituximab probably next week. Then, he is going to have an autologous stem cell transplant. I would really appreciate any survivors out there who can let us know what he should expect and offer some hope that he has a chance of beating the dismal odds we've read about. We've got 2 kids under 2 yrs. old with abother one on the way, and we are having a really hard time with this. We need some hope.

Dianna2013's picture
Dianna2013
Posts: 15
Joined: Nov 2014

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

illead's picture
illead
Posts: 824
Joined: Aug 2012

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
Posts: 2
Joined: Oct 2013

Thanks Becky for taking the time to reply :)

illead's picture
illead
Posts: 824
Joined: Aug 2012

We are kind of in uncharted waters.  It's scary but very hopeful.  We take one day at a time but add a few extra! Wink Bill & Becky

udnic1228
Posts: 2
Joined: Dec 2013

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

Susanpreefer65
Posts: 3
Joined: Jan 2014

Nicole,

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

jlroeper
Posts: 1
Joined: Jan 2015

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. 

willow55
Posts: 8
Joined: Jun 2015

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.

 

 

Kevint
Posts: 1
Joined: May 2015

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

 

grannyx4
Posts: 9
Joined: Feb 2010

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

rainey54
Posts: 3
Joined: Oct 2015

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?

SDB4SCB
Posts: 1
Joined: Dec 2016

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's picture
Max Former Hodg...
Posts: 3074
Joined: May 2012

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's picture
illead
Posts: 824
Joined: Aug 2012

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.

Bob s
Posts: 1
Joined: Apr 2017

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
Posts: 1
Joined: Apr 2017

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

illead's picture
illead
Posts: 824
Joined: Aug 2012

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
Posts: 1
Joined: Apr 2017

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.

Wroberts64
Posts: 2
Joined: Feb 2017

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. 

illead's picture
illead
Posts: 824
Joined: Aug 2012

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's picture
Max Former Hodg...
Posts: 3074
Joined: May 2012

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

.

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lindary
Posts: 626
Joined: Mar 2015

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. 

Evan
Posts: 3
Joined: Mar 2018

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's picture
Max Former Hodg...
Posts: 3074
Joined: May 2012

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
Posts: 3
Joined: Mar 2018

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's picture
illead
Posts: 824
Joined: Aug 2012

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
Posts: 3
Joined: Mar 2018

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's picture
illead
Posts: 824
Joined: Aug 2012

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
Posts: 1
Joined: Jul 2018

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's picture
illead
Posts: 824
Joined: Aug 2012

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's picture
gottarace
Posts: 17
Joined: Aug 2018

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's picture
illead
Posts: 824
Joined: Aug 2012

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's picture
gottarace
Posts: 17
Joined: Aug 2018

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's picture
Max Former Hodg...
Posts: 3074
Joined: May 2012

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's picture
illead
Posts: 824
Joined: Aug 2012

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

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