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How to feel/What to expect

determined2live's picture
determined2live
Posts: 3
Joined: Jul 2014

I'm soon to be 52 and was just diagnosed with MCL.  My family doctor found something odd on a blood test when he was checking for rheumatoid arthritis.  He thought it might be CLL but I've seen 2 oncologists since and they both agreed it was MCL.......of course I could manage to get one of the more rare versions of NHL!  Anyway, it's been a very up and down 4 weeks so far.  I've been sad and I've been numb.  I've thought about the positives as much as possible.  Maybe the most confusing thing is that I don't feel sick in any way.  I'm very aprehensive about what's to come in the next several months.  My port is next and then I begin R-CHOP sometime in the next 3 or 4 weeks.  After that my doctor plans stem cell replacement. 

Anyone who's been thru this treatment, I would really appreciate any advice/details/etc that you feel like sharing. 

Thanks,

Jerry

Folks24
Posts: 107
Joined: Feb 2007

I was diagnosed with lymphoma NHL  in 2012 at 55. I also had absolutely no symptoms at all.  To be honest, I would rather feel good and be diagnosed than feel like heck and be diagnosed.  For me, it made me feel calmer to feel ok and face the treatments better.  It is normal to fear the unknown and they tell you "everyone is different on symptoms which doesn't help a durn bit!" I hd no clue what to expect either.  I also went through 6 rounds of R-Chop. no port though, no stem cell but methotrexate shots.

I can understand the anxiety you feel. Hard to be told you are not good when you feel ok.  Get from your oncologist what to expect as to symptoms from treatment, etc. That way you know what is normal and what is not.  Try very hard to keep your weight up. Don't plan on doing much or going out at all after your treatment! Your white cells will be at the lowest then.  (I had my treatment and 5 days of prednisone. I knew after the treatment, to stay in and well away from any one ill for at least a week. I had groceries delivered if I needed them or planned ahead and stocked up.)

I planned things out - even stupid little things like today I will do the laundry. Sounds dumb but it made me feel that I had some control over things. I did become hypochondriactic at taking my temp though. I got a digital thermometer becausee my oncologist absolutely didn't want my temp to get to 101. Also get plenty of rest and give yourself and your body a break.

Hope I helped some. Smile

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Sorry you have to be here but you will find caring and supportive folks on this board.  I can't respond directly to MCL but I was treated with R-EPOCH which is similar to RCHOP (the letter that agree).  I had Diffuse Large B Cell Lymphoma and am close to 3 years in remission now.

It's okay to be human, Jerry and anxiety is very normal - especially now.  If you aren't on anti-anxiety medication, ask your doctor about it cause it really helps with anxiety and sleep, keeping the worry monster a little quieter.  All of this is very scary in the beginning but it is doable.  For me, it wasn't as bad as I expected - no picnic but I got through it and you will too :).  You will be glad you have your port.  It's a relatively minor procedure and they will use it to give you chemo, draw blood, give you fluids, etc.  I still have mine but hope to get it removed at the 3 year mark in November (that was my choice).

You will hear from others here, Jerry and know you are not alone.  Please feel free to come here to ask questions, rant and offer support when you are ready.  We're not judgemental.  A positive attitude and humor are free weapons in this battle - use them if you can.  It's amazing what a good laugh can do.  I'll probably offer more later but I wanted to welcome you to the group. 

Hugs, positive thoughts and strength,

Jim

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Jerry,

Welcome, regardless of how much you would rather not need to join us here. Our unofficial lay expert on mantle cell is Becky, screen name illead.

Her husband Bill has had MCL for a while now. He has been doing superbly well on a new drug used against MCL. I'm sure she will see your post and meet you very soon.  You are corrrect, MCL is an odd bird, even among lymphomas. 

Best of luck,

max

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illead's picture
illead
Posts: 847
Joined: Aug 2012

Finally.....I'm so sorry my writing is a little delayed, I know how anxious you and your family are.  As Max said, my husband Bill is the one with MCL.  First off I want to tell you to try to relax and know that there is a lot of help out there.  You can click on our picture and it will send you to our page which tells Bill's story.  He was diagnosed this month in '11, he was scheduled for his last Rituxan maintenance infusion and would be 2 yrs in remission when we found out that he had relapsed.  That was this past Feb.  It's a long story so I hope you will take the time to read it on our page.  His first treatment was Bendamustine (Treanda)/Rituxan.  I am wondering if your oncologist has decided against that as it now seems to be one of the preferred chemos for MCL.  It is much easier on the body, very few side effects and no hair loss.  Having said that though, he/she is the doctor and I am sure he knows his stuff.  Maybe because you are so young and facing an SCT, he wants to be more aggressive.  They still do use RCHOP.  If I were you though I would check out Bendamustine for MCL on the internet and just run it by him.  I want to assure you that researchers are working feverishly on MCL.  Check out Dr. Brad Kahl, Dr Advani, Dr Wang MCL.  You will see they are devoted to their study as are others.  We always warn about too much info though and MCL cerrtainly has that too on the internet, but they have made great leaps in the last couple years and more on the horizon, it is not near as ominous as it was a few years ago, so don't pay attention to the older sites that are more negative.  As you can see on our page Bill is on a new target drug (Ibrutinib) that is still under clinical trials for B Cell lymphomas and some leukemias but the FDA took it out of trials for MCL only because they really did not have anything for relapsed MCL.  He has to take 4 pills/day for the rest of his life.  When he relapsed he had a cluster of lymph nodes in his abdomen area and 2 others at his side.  After 4 months of taking the pills his Cat Scan shows scant evidence of nodes, so the Ibrutinib is doing the job.  I hope this has relieved your mind a little, but it is a shock to everyone when they get a cancer diagnosis, it always happens to someone else.  Take one day at a time, you are in good hands and you will find some very caring doctors and nurses out there.  Join us on the forum here, we welcome you and you will find that we are very supportive of each other.  This forum has gotten Bill and I through a lot.  The ones here have been with us every step of the way as with any of us who needs a hearing ear.  Feel free to ask me or Bill any ????s and you can personal message us through our page also.  Hang in there Jerry.  Yes, cancer changes your life, but you use those changes for the better.  It is what it is, but we are not "it", we can go on with our life and enjoy it and our family.  I know all of us here wish the very best for you, we look forward to hearing from you if you feel like talking.

Becky 

determined2live's picture
determined2live
Posts: 3
Joined: Jul 2014

Thank you for your replies.  I'm sure I will have more questions/comments as things progress.  It truly is a blessing to have somewhere like this to talk with people who have the "same" experiences.

More to come......

Jerry

Jlarki
Posts: 1
Joined: Jul 2014

I was diagnosed with MCL stage 4 in '10. I was 34 yrs old. After my first round of RCHOP treatment I had multiple organ failer - Lungs, liver, and kidney. I was on life support for 1.5 months. It took me about 9 months to recover from all the muscle/weight loss etc. before I could start chemo again. I finally finished my chemo and got an unrelated donor transplant in 2011. I had a rough transplant due to TAM and GVHD. In patient at Mayo Hospital for 3 months. Then you go home and do follow ups everyday until they gradually decrease the follow ups depending on how you are doing. Anytime you get a fever you have to be emitted to the hospital for about 1 week until you are fever free for 48 hours. You get really weak and lathargic after the transplant. It took me a good 4 to 6 months to start getting my energy back. The transplant was hard but not as hard as recovering from being on life support for 1.5 months. You will need a good support team to assist with driving to Dr. appts and keeping up with all the meds.

 

Even though its the hardest thing I've ever done; some good came out of it. It brought members of my family, that werent talking to each other, back together. I also appreciate everyday that I wake up to see my family and friends; you definitly wont take anything for granted.

 

I'm living proof there is life after transplant... I hope you have an easier go at it. The Dr's say everyone is unique so there isn't really a norm; to compare one persons transplant to another.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Jlarki,

Geeze...your story is one of the most brutal I have read in three years here. I applaud you and admire your spirit.

I was run over by a car years ago, and had 18 fractures, mostly ribs and the shoulders, but also my back and left femur, plus a ripped off knee cap, although I am told that was not technically a "fracture." My ortho doctor was a Naval Reserve Surgeon, who had done a tour in trauma in Vietnam.  I was going to him for a visit after getting out of my own two months in the hospital (I could not walk without a quad cain for about another year or more).  He stopped in the hallway and said, "Max, it is amazing to see you walking in here with that walker on your own."  I told him,"You've seen way worse than me, I know." 

He smiled a little and said, "I have seen more fractures, but not in anyone who lived."

Keep living, keep dropping jaws with your story. Our story does not end until the Conclusion.

max

determined2live's picture
determined2live
Posts: 3
Joined: Jul 2014

Had a colonoscopy Friday - I'm told that the MCL can sometimes lead to gastrointestinal issues.  Everything came out clean as a whistle!! (no humor intended :-))  Doc said to come back and see him in 10 years.  Now it's my port placement tomorrow and then first day of chemo very soon.

One day at a time.......

Jerry

illead's picture
illead
Posts: 847
Joined: Aug 2012

That all sounds very positive, hope everything turns out well, keep us informed if you feel like it.  Congrats Jlarki for the long remission, but what a journey to get there.  The researchers are doing their job with MCL.

Becky

Omi1
Posts: 1
Joined: Aug 2014

Hello Determined2live:

     This is the frightening side of life, the belly of the beast but the science is now quite incredible.  My spouse had MCL in 2009.  He did six sessions of R-CHOP followed by high does Cytoxin at

Johns Hopkins. The disease has returned, but he never followed up with scans as I begged him to. Out of sight out of mind.  Treatments have changed since his last diagnoses, no more R-CHOP,

the newest treatment is Rituxin and Bendomustine (Treanda).  This is a two drug chemo.  There is also a pill, Imbruxa.  My husband chose the chemo route because he has a mass in the lower,

right quadrant that could impare keeping the pill down.  So for him chemo is the better option.  We begin on Thursday. Please look at the data on these new treatments.  How many opinions

did you get?  God Bless You

                                                                                                                                                                 Omi1

 

 

 

illead's picture
illead
Posts: 847
Joined: Aug 2012

I think you are referring to Imbruvica rather than imbruxa.  Imbruvica is the medical name for Ibrutinib, which is the new target drug for relapsed MCL.  We welcome you to the forum and personally my husband and I would be very interested to know how the Benda/rit works for your husband.  He can always go the Ibrutinib route but I sure hope the chemo works.  I think it would be worth your while to research Ibrutinib though.  Our best to you and your husband.

Becky & Bill

 

 

leeleep1's picture
leeleep1
Posts: 1
Joined: Jun 2017

Rchop and Hyper cVad are pure Hell - THE most aggressive treatment for MCL. BUT if you are only having the one, it may be totally different. I had it - stage 4 in 2006, and am now doing treanda, rituxan, and Nulasta. MUST easier!!!!

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