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mcl diagnosis

einc80
Posts: 10
Joined: Oct 2015

Please help, I am a nervous wreck as my dad just got diagnosed with mantle cell lymphoma . He is 67 and in great shape and akways takes care of himself. We are all just in shock:( the stuff I am reading doesn't sound great but also from years ago on the web. Can anyone offer any advice or questions or anything we should ask specialist on Thursday?!? I'd greatly appreciate it

illead's picture
illead
Posts: 863
Joined: Aug 2012

These are my first words to you, my 2nd are, don't read past information. My husband was dignosed with MCL in July '11.  You can read about his journey by clicking on our picture.  MCL is not a death sentence.  They have come a long long way.  There is a poster on this forum who is also newly diagnosed Joe Costello, look for his threads.  He is in clinical trials at MD Anderson right now.  His doctor is Dr. Michael Wang.  He was one of the head researchers for the drug Ibrutinib (a new target drug).  It was released in Nov.'13  for relapsed MCL only because they had nothing but temporary fixes with chemo.  My husband relapsed in Feb '14, so the release of Ibrutinib was an unbelievable blessing for us.  He was back in complete remission 3 months after he started taking it.  Back to Joe, the clinical trial he is in is for 1st time use of IB for MCL, it will be followed by Hyper C-Vad (chemo).  I would suggest that you look into making contact with Dr. Wang or MD Anderson.  Of course it's up to your dad and family.  Chemo also works for first line treatment followed by IB if there is a relapse.  There is ongoing research for MCL and for relapsed MCL.  The dedication of the researchers is incredible, we are very thankful.  A very good source for information on MCL is the Lymphoma Research Foundation (LRF).  You will find tons of encouraging info there.  In fact there is going to be a Webcast about the latest on MCL on Oct. 29 I believe, that you can sign up for.  One of the Doctors speaking is Dr. Brad Kahl from Univ WI.  He also was on the IB research team and is very dedicated.  I hope this has helped, I know it is scary, but I really want you and your family to know that there is a lot of hope out there.  My husband is doing great and we are able to keep our worries on the back burner and continue on with our lives.  You can always come here, we are all supportive of each other and you can also personal message me if you want.  Again just click on our picture and follow the prompts.

My very best to you and your family, hang in there, there is a lot of hope,

Becky

 

einc80
Posts: 10
Joined: Oct 2015

Thank you for the kind words.  May i ask where you guys live? Your husband went to standford for treatment?

 

I am so scared.

 

Erica

illead's picture
illead
Posts: 863
Joined: Aug 2012

We live in Yuba City, CA 40 miles north of Sacramento.  Our cancer center here is affiliated with UC Davis.  Bill's doctor at Stanford was also on the research team for Ibrutinib.  I know you are scared.  Cancer is a shock to begin with and then on top of it, Mantle Cell.  Really and truly though, they are making such progress with MCL.  I remember Joe when he was first diagnosed, we talked on the phone several times, he thought his world was shattered.  Now he is in the hands of a wonderful doctor and he encourages Bill and I.  He is so upbeat and his family is there for him, like you are for your father.  This is one of the hard parts of your journey, but you will all come out of it with great hope and and a deeper love for each other.  You will get past this difficult part.

Thinking of you,

Becky 

einc80
Posts: 10
Joined: Oct 2015

Thank you Becky. I just pray every single second that we don't get awful news on Thursday at my dads first appointment:/

illead's picture
illead
Posts: 863
Joined: Aug 2012

Please let us know what you find out on Thurs. if you feel like it.  Whoever goes with your dad, make sure they take notes and get all of his results of testing etc.  You think you will remember but most times it just becomes a blur.  We have Bill's in a binder.  I hope you are able to share the info I gave you with your family, they might want to mention it to your dad's oncologist.

We will be thinking of you and hoping for the best,

Becky

einc80
Posts: 10
Joined: Oct 2015

Thank you! I'm gonna go with my parents to the appointment. I plan on bringing a tape recorder too. I will keep you posted & again I thank you

JoeCostello
Posts: 19
Joined: Apr 2015

Erica,

Becky has already given you a very good update on me but I just wanted to offer you some encouragement too. I was in the same mental state just a few short months ago. After reading tons of information on the net about MCL I too thought I was in big trouble. Just know that most everything you read on the net is several years old and they have made some very promising advances recently. As Becky has said I am in a clinical trial in Houston at MD Anderson and the response rate for newly diagnosed patients in this trial are VERY good. I started the trial 2 weeks ago and I can't believe how fast the response to Ibrutinib has been.  If you can before you start any treatment, try to come out here for at least a second opinion. They treat more MCL patients here than anywhere else in the country. That's is not to say there are not other great treatment centers in the country to get a second opinion at. I just know I'm thankful I came out here myself. Be comforted to know there are more options available to treat this monster than in the past and with that a lot more hope. 

Joe

einc80
Posts: 10
Joined: Oct 2015

HOw do you know about the clinincal trials?  does the doctor refer you to them? This is all so foreign to us ifeel very overwhelmed on top of it all.

 

My dad goes tomorrow for his first appoinment......I am very very scared but trying to stay positive.  Are there any specific questions you guys think i should ask tomorrow?

 

Thank you so much!

 

Erica

illead's picture
illead
Posts: 863
Joined: Aug 2012

I am thinking that Joe will answer soon or pers. mess you.  He is the best one for the answer to that since he has been through it.  If you don't hear from him, let me know and I will call him for you.  I would think that you or your dad can talk to the oncologist about what we have told you and see what he says.  You have the right to a 2nd opinion.  You also can call MD Anderson and ask them explaining your dad's situation.  I talked to Joe yesterday and he said they are really making progress in their MCL research.  He says Dr. Wang is all smiles when he sees him.  Also that his lymph nodes have diminished dramatically and he has not been in trials very long.  I believe they are very interested in first time diagnosis patients who have not been treated yet.  You have time, especially since your dad is not symptomatic and very healthy.

Let me know, Becky

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

I do know that the American Cancer society does have a link for clinical trials. Here is the link.

http://www.cancer.org/treatment/treatmentsandsideeffects/clinicaltrials/app/clinical-trials-matching-service

I am not sure if there are other sources to look at. I remember looking for some for my one brother-in-law but that was 10 years ago so I am not sure how I found them. 

einc80
Posts: 10
Joined: Oct 2015

Well we made it!!! My dad has to go ahead w a petscan, bone marrow biopsy and blood work. Doctor seemed very positive and his ki-67 was at a 15%

 

I will say we walked out feeling much better than we did walking in:)

Thank you again for all of your support!

illead's picture
illead
Posts: 863
Joined: Aug 2012

So glad you are feeling better about your dad's diagnosis.  I hope all goes well from here on out.  We are always here for support.

Becky

einc80
Posts: 10
Joined: Oct 2015

Thank you Becky:)

pj2015
Posts: 7
Joined: Oct 2015

Thank you for sharing.

I'm a young 68 year old nana, just getting started on dealing with this, will start chemo Monday November 2,2015,

illead's picture
illead
Posts: 863
Joined: Aug 2012

Nice to meet you.  It sounds like you are not only a young 68 but a very positive one.  I have no doubts you will do well and have a long life ahead of you.  As you can see from previous posts, there is a lot of help now for MCL, so we have a lot to be thankful for.  I am sure you know that stage 4 in lymphoma is not the same as other cancers.  For MCL, it means that the bone marrow is involved.  I am here if you need more answers or suppport as are all of us here....welcome.

Hang in there,

Becky

pj2015
Posts: 7
Joined: Oct 2015

Thank you for getting back to me, and being here.

No, i do not know 'that stage 4 in lymphoma is not the same as other cancers'. I do know the MCL It's in my bone marrow. After six months of chemo I'll be looking at a marrow transplant.

illead's picture
illead
Posts: 863
Joined: Aug 2012

It is true that so far MCL is not curable but researchers have made giant steps.  When Bill, my husband was diagnosed in July '11, it was practically a death sentence because it always relapsed and then there was nothing but more chemo which was temporary.  You can click on our picture and read about his story, but as I have said on this thread, there is lots of reason for hope now.  Scts for MCL are questionable with many of the researchers, you might want to do some homework.  Dr Brad Kahl, U WI, Dr. Michael Wang, MD Anderson, Dr Thomas Habermann, Mayo clinic are some of the experts in resarch of MCL.  And yes Stage 4 is more or less a way of identifying how the lymphoma is presenting itself, ie lymph system, blood, bone marrow etc.  Please believe that it does not indicate prognosis.  You can google lymphoma staging and it should explain much better than me.  Again, you have much to be hopeful about and please reread the info on this thread about clinical trials etc.

Becky

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