Newly Diagnosed Mantle Cell

While being on this site usually isn't due to good circumstances, I found it helpful as I went through my war last summer. Just need to geer up mentally for the battle ahead. I am a man of prayer so if you want some prayers, let me know. I had a differnet form of lymphoma, but those on this site with the type you have will usually chime in a give good info. I found that miralax and antacids were my best friend to keep me feeling as good as could be considering the nasty chemo. Don't wait till you have bad side affects.

Jeff

JoeCostello said:

Thank you Jeff. I have been

Thank you Jeff. I have been reading a lot of encouraging comments from 2-3 years back. I would appreciate the prayers and I will pray for you too. I have a very supportive wife, family and church. I think I mentioned I am scared.  I have never even spent a night in a hospital before except being with my wife for several surgeries. I will remember to take the miralax and antacids with me. I guess I will be scheduled for the the PET Scan, colonoscopy and bone marrow aspiration next week. I meet with an oncologist for the first time Monday. 

I am sorry to learn your news, with much regret I am very new to this site too.  One year ago I was diagnosised with folicular NHL stage IV incurable.  Three weeks later my Father was diagnosis with Mantel Cell.  I have been hiding this from my family so I don't creat more stress and havoc in my family.  I have to support my father with all I have and beat this on my own.  You have a right to be afraid, it's terrifying to say the least.  That said, you just might surprise yourself and find a strength you never had and look at fear and stare it down.  Try to breath, meditate and stay as clam as can be.  I fear stress feeds the monster I call cancer.  My father was dreadfully ill, immediately went into treatment.  I wish he got a second opinion.  He is alive and well but could be better.  There is much to digest in the coming minutes, days and weeks.  Get yourself the best team of trusted doctors, ask questions and you'll know what to do from there.  Like you I was never ill, super healthy all my life.  Do yourself a favor, kick cancer where the sun don't shine!

God Bess and prayers are coming your way!

khdh2015 said:

Hello Joe

You and my husband sound like you have close to the same story! He was never sick and maybe went to the Dr. about 5 times in his life. He had swelling on the side of his face that never went down, so I made him an appointment to see the Dr. Never any other symptons but tired and ached, but thought that was part of getting old. He had a biopsy and we found out on Feb. 4th he had Mantle Cell Lymphoma...from there he had the Pet Scan, Bone Marrow Biopsy and it was staged at 4. He is now a patient at the Cancer Treatment Center of America and is undergoing Chemo...I sent you a private message back...please check it and I think you and my husband could really be encouraging to each other through this journey. Prayers to you and your family!

I forgot to tell you, I didn't know either. I went to the doctor for simple wax removal & she felt a very small lump on my throat. I had to feel around to find it afterwards. She ordered an ultra sound the same day. Within about a month, it was very visable, almost the size of an egg. Mantle Cell is caught at stage 4 as there are no symptoms. Had a pet scan a week later and my whole body was full of tumors. Started chemo....still here. :-) I live near Cleveland and I'm getting care through the Cleveland Clinic.

Dianna

JoeCostello said:

Thank you

for your reply. I'm sorry to hear that you also have an incurable cancer. I hope its at least treatable. You have really been through the ringer with yourself and your Dad. It is terrifying like you said. Its late and I have to be up early so again thank you and I wish you the best. I will be praying for you all as well.

Mine is very treatable and cancer never met the likes of me before!

Everything right now is overwhelming for you and your family.  Try to take a step back and relax a bit, feel your faith and you know you're not alone.  I wish I was better to myself in the beginning.  I went into warrior mode for my husband, two children and my parents.  What helped me was meditation, I had to google it for I had no idea how to do it but I was at a breaking point.  It worked and in minutes I felt better.  Music, laughter (yes you will laugh again I promise) yoga and the littlest of things that give you pleasure....... indulge.  Be good to yourself, take a deep breath and exhale.  

Oddly my best friends are oncologists (Or perhaps that was Gods plan all along).  My girlfriend is a specialist in prediatric brain tumors and her husband is my oncologist (MD-PhD, hemolologist) along with another from Dana Farber.  The reason I told you this is they have been with me every ugly minute and gave me advise that at the time I wasn't sure of but really helped.  This horrible journey your on at the moment will be more manageable when you decide what treatment you will take.  I looked at my girlfriend when she told me that as if she had two heads but she was right and my fear turned into Fight.

Hang in there!

JoeCostello said:

Right you are

Everything is very overwhelming. I am still in shock that my life has just turned upside down. I have been praying a whole lot more than what I used to and those prayers are definitely more fervant. You seem as though you have a great support system around you. I too am blessed to have my family. I have a wonderful wife and 4 children. Thankfully the youngest is 21 years old and only one of the 4 is still dependent on me. We have a dear friend that is a Nurse Practioner and is urging me to go to MD Anderson in Houston for a workup. I understand that they will work with my local oncologist to work out a treatment protocol. I would not have a clue about this sort of stuff without her. I just got back from having a PET scan and I'm a little tired emotionally from all of this so I think I'm going to take your advise and try to relax a little and then go ride a horse this evening. Thank you again for your encouagement. I am definitely in need of hope.

Joe

 

MD Anderson is wonderful advise and I couldn't agree more!  GO!!!!

Breathe one breath at a time and enjoy all that makes you happy!

OO7 said:

Quick note

I chose a beautiful winding road as my profile picture because it represents the journey.  This road is horrific but not every step is a bad one.  There are very beautiful paths here too.

God Bless You and your family.  Be good to yourself and have a peaceful day.

Joe,

Dum Spiro spero -- the state of motto of SC, your state and mine.  "Whilst I breath, I hope."

Was there ever a nobler statement of resolve and determination ?  A lung specialist told my mother, in 1986, that I had "maybe 30 minutes to live," due to a collapsed lung, which had filled with blood clots. He also believed I was getting pneumonia, but it was just bruising.  The immediate cause of concern was that my heart rate was out of control, and they ran a Swan-Ganz catheter into the heart right then.  

I then went on a respirator for 16 days.  A day later, we were told I had liver failure, and I turned pumpkin-colored.  Mother wiped my forehead with a white tissue a day later, due to fever, and the sweat was bright yellow -- she showed it to me.  After two months, I was out of the hospital.   I looked like one of the few people who were liberated from Auschwitz.  Too weak to hold my head up, it stayed flopped over on my shoulder.  Two years later, I could walk unassistted.

For that reason, breathing reminds us of life, that there is always a fight left, so long as we breath. May your road be easier than you suspect it might be. 

max

2009, HL, Stage III-A.  2015, Prostate Cancer, Stage t2An0m0

Today, very well. Pushed mowed nearly an acre of grass this week....

JoeCostello said:

My Resolve is developing

I like that Max. While I breath, I hope. I am not a native South Carolinian but I think I will carry that mantra with me. Since I am not from here I always tell people I may not have been born here but I got here as soon as I could. I have lived here for 35 years and love this state.

Max you sound like you have been run through the ringer more than one time in your life and you keep on kicking. I hope I can have your resolve when the rubber meets the road.

I have had a reprieve the latter part of this week from a lot of the stress. My youngest son came home from college and another son and his wife came down from Maryland to see me. Our other two children live here and we have had a nice time together.

I had a bone marrow aspiration today (not as bad as I thought) and a talk with the oncologist. He was trying to be encouraging about my condition. He has assured me it is treatable and we will kick it into remission.

Thanks to Becky for answering my questions.

 

While I breath, I hope.

Joe

 

So much has to do with attitude. I am basically a positive attitude person. It's not that I don't have negative thoughts. I tend to turn them into positive actions whenever I can. I can't wave a magic wand and make this go away. So I do want I can to make my life pleasant. For me that includes working and spending time with family & friends whenever I can. When I can't I live on the computer to talk to them. My hobbies are reading and the computer. (I am a geek.) Now that it is getting warmer out I am looking forward to cookouts.

Also as you get more info, research. There are many good cancer sites. Don't let the depressing ones scare you. I read those to see why they are such downers. Often they are older posts and treatments have changes since then. So plan for tomorrow.

Dianna2013 said:

Mantle Cell Lymphoma

Hi Joe,

I'm Dianna, I was diagnosed in 2013 with Mantle Cell. I too was scared and after researching it thhought I was handed the worse. Yes, Mantle Cell Lymphoma is very very rare, usually a (man's cancer) but I got it. One month before my 57th birthday. I'm also a quadriplegic resulting from a boating accident 25 yrs ago. I'm in remission, 2 yrs now. My story is : I went through chemo, R-Chop, and was to follow with a bone marrow transplant. After having several set backs from chemo, my white blood count was very low, hospitlized for that and cardiac toxiy, I was no longer a canadiate for the transplant. My Doctor said that Rituxan treatments would be just as effective as the transplant. They said I wouldn't survive the transplant. Don't let me scare you about the chemo, everyone is different. I never got sick, just very tired. Lost my hair of course, (that was the worse). Heart toxity, I didn't even know it was happening during chemo treatment. My body is sensitive from medicine. Plus being a Quad for 25 yrs, heart and lungs aren't as strong as an abled-body persons. My point on this is Chemo wasn't that bad. I now have a cat scan every 6 mos and a Rituxan every 3 mos, a total of 8. I have 2 more to go. Rituxan is given intravounsly...takes about 2-3 hrs. Usually no side effects.  There is a pill that was released in 2014 for when and IF we relapse. There is hope and there is much research being done on Mantle Cell.  I have much hope on the prognosis we study. I have  wonderful support from my family. I have a 12 yr old granddaughter who just lightens my world and keeps me going. Of course she's in to 1Direction, she's the future wife of Harry Styles :-)  comes over often and we "rock out" I live for her and continue to do so!! There is a woman on this list, you'll hear from shortly, she manages our Mantle Cell forum. Her husband has Mantle Cell and I have to say, much educated on the subject. I didn't mean to ramble on, just try to give comfort and hope. We will overcome this, enjoy your life and try not to worry!

Dianna

Thank you for sharing your story. I was diagnosed last month with MCL, and my emotions are all over the map. I have mad one round of treatment with five more to come (bendamustine + rituximab), then the plan is for a stem cell transplant. 

I am am someone that keeps super busy, always healthy, planned everything sometimes months in advance - concerts, trips, etc. 

i have a 1 year old granddaughter who is the light of my life. I cannot imagine not seeing her grow up. 

I wish dish you continued remission.