Mantle Cell Lymphoma

My sister told me last night she has been diagnosed with Mantle Cell Lymphoma.

Can anyone tell me about their experience with this and what I can expect to help her through?

It is all new to me.

She is having a "port" put in today and starts chemo this week.

I am scared.

My husband was diagnosed with mantle cell in April 2001. He also had a port put in then started with chemo of Rituxan and C.H.O.P for 6 rounds. His is in his bone marrow so after he was done with the chemo they wanted to do a bone marrow transplant because it would give him a longer life span. But as of today he could not have the transplant because of other complications. He is on a different kind of chemo now and doing fine. He is on what they call a maintence round of drugs. I don't know what kind of chemo drugs they will use on your sister but the important thing is to be there when she needs a shoulder to lean on or help understanding this dreaded disease. The most important part is to never give up and don't stop believing there might be a life saving drug just around the corner. My prayers are with you and your family.

Jan W.

This is an update of my sis's progress. She is doing GREAT! She has the best attitude, and the MD's and nurses all love her.

Two years ago this was considered a very RESISTIVE cancer. Thanks to stem cell (from umbilicle cords) research it is one of the most RESPONSIVE. Wonders never cease to amaze me.

Everyone in our family is doing what they can to help. One cooks and shops. Another looks after the pets when she's away for hospital or doctor treatment. I am chauffer and shoulder to lean on...literally! Another is taking care of applications for benefits. One friend calls her when she is home, visits at the hospital and at home. There is a network of friends and relatives WORLD-WIDE who are praying and it is working.

She goes through two different series of chemo. First a round of Rituxan, then 4 chemos, then two weeks home, then Rituxan and 5 different chemos and home for two weeks, then back to the first series...she's had 3 of series "a" and two of series "b". Now she is remission and in the process of having stem cells harvested to cryo preserve. They are not mobilizing willingly, so she will be getting a new drug next week along with the Neupagen shots. Then series 3 of "b" and two weeks later the "big guns" chemo. A few days rest and they will infuse her stem cells back into her bloodline.

The doctors have been very thorough and have given a straight-from the hip approach 'cause that is the way she accepts the info. With lots of humor added. She doesn't want to know odds, she says she is the only one of her and every one of us is an individual,since treatments are different for each person, how someone else has done before doesn't interest her.

I hope anyone you know that is struggling with this is doing well. Ask questions if you want. I have copious notes! Hugs, TM

My father was just diagnosed with NHL. Will find out tommorow if it is Diffuse large B cell or Mantle cell. Dr told him B cell is more responsive and mantle cell is still very difficult to treat. How is your sister doing? Is it true that new advances are making mantle cell more responsive? The only info I have is on the internet and what the dr said...the internet says prognosis is poor---but I don't know how old that info is. Any stories or info on mantle cell would be greatly appreciated. The dr said last visit most likely mantle cell. Thanks
Amy

I just what to give people out there hope. I didn't when my mother was diagnosed with mantle cell. We heard almost 6 years ago that she would die in two to five years. I was so scared to hear this news. That the person in my life was going to die way to early and my mother is my life. She is a vary special person to me, she is my life. All I could think about was she would not be there for my wedding or when I have children. When a mother should be there for her children. I need my mother but my sister that is disabled needs her more then I need her. All I could think about is that GOD can not take such a wonderful person from me way to fast. Now I know DO NOT LISTEN TO THE FACTS PLEASE DONT. THey will just hurt you. I let the facts get to me and everyday I cried. I went through a bad depression but I know now do not listen to the facts. My mother has been through such a tough road. Seeing her sick was so hard on me. This has not been an easy road for my mother or my family. I have seen what cemo can do to someone. It is a sick drug and I hope on everything that there will be a cure out there for my mother.
My family and I have been blessed with the best Doctors and nurses we could ever ask for. They were there for my mother, my family and me. I do not know what I do without those wonderful people.
I have to say these 6 years have been a hard ones. There has not been a day in my life that I have not thought about Mantle cell. The best advice I could give anyone is take one day at a time and take the good news when you get it. When my mother would be in remission I would still want to know when is it coming back and it has but now she has been in remission for a year. The cancer has came back two times but it is gone and I believe now that it will stay gone. I hope this email gives people hope out there. Take my advice I never took others advice
1. Doctors are not God do not let them tell you when you are going to die or one of your family members will die.
2. Do not let yourself miss the good days.
3. Relax when you are waiting for the results ( I know this is hard to do, believe me) just remember if you worry more or less the results will be the same. So enjoy every second you have with that person.
4. DO YOUR RESEARCH doctors do not know everything THEY ARE NOT GOD and some think they are.
5. LAUGH. I know you are thinking how can I laugh at this time but Laughter is the best medicane.
6. Keep in contact with your Doctor ask him all the questions and concerns you have.
7. Dont let the bad days take over the good days.
8. DO not let the Doctor run your life it is your life and you make the decisions not them
9. Enjoy everyday you have with everyone like it is your last.
10. Everything will be alright.

Amy,
Thanks for writing. Info on the internet is WAY out of date. We are in the KCMO area and all treatment was done locally at wonderful facilities.

I guess you've read my last update from earlier this year.

Our theory is Laughter IS the BEST medicine, but thanks to God, stem cell research has made leaps forward in fighting this disease. (Stem cells from umbilicle cords.)

My sis finished her 5th round of chemo in Feb/Mar; had stem cells harvested in Mar with the assistance of a drug in development that helped the 'mobilization' of the stem cells; then she had the 6th round of chemo in the hospital and a further week of what we refer to as 'big guns' chemo that was out-patient; that was the hardest part of this whole year. Care-givers want the patient in the hospital for our security and the patient is actually happier and does better at home, so don't be afraid of this. Getting her to eat and drink was the difficult part. When she was too darn tired to take a bath, we did 'bird baths'. The hardest part only lasted about three days, she gained strength and appetite and we had a routine (and she knew I'd make good on threats of "If you DON'T drink this you'll have to go in for an IV!!!") and understandings were reached.

Huge hint: use straight vinegar in a spray bottle to disinfect everything when you get to this point...cheap and works well on food surfaces (much better than bleachfor food itself) and for any house-hold surfaces. (I still use it in the kitchen at my home.) And if you do use bleach for some disinfecting, a spritz of vinegar will cut that slimey feeling left by bleach. Just don't breathe too much of either one!

One concern was infection of the portacath and star-lines. These had to be removed to heal up the infection and reinserted a few times. She got through it though like a champ. Just a few tears.

After the big guns chemo her own stem cells were put back in during a two day process. There were trips to the Bone Marrow Clinic for red cells and fluids a few times and for fever.

Her system started making its own blood and after a few weeks she was outside walking with a mask on (it was summer) and taking care of herself. Follow-up PET scans and CAT scans have shown she is in total remission. This month will be her 6 month follow-up scan.

She went back to work in September, moved into a different house and has been supervising remodeling projects to get it just the way she wants. An unexpected thing was how the chemo effected her muscle-tone. Walking was good for cardio, but her muscles aren't what she was used to before, and being a hard-headed person, you just can't slow her down. Well, she hurt her back and that caused her left leg and foot to go numb and that caused her to loose her balance at work and fall and break her left arm in three places near the wrist. After a surgery to put in a titanium plate on one bone and pin another one, she also got some cortizone shots in her spine to take care of that problem. She was in a wheelchair with one arm in a sling for 10 days. She went stir crazy!!!

That next week she was driving herself to work (with a rigid splint) and the shots had greatly reduced the problem with her back and leg.

Scans are postponed until the plate and bone fuse well enough to get through the PET magnetic processes.

And for me...I made reservations on a cruise so people can take care of ME and I won't take care of anyone for a whole week. It was supposed to be the end of Sept but hurricane Rita postponed it until January....guess that was so I could work in the broken arm doctor visits, haha. Plan something for YOURSELF...anything! It really helps to have something to look forward to, and I'm not kidding. I have a wonderful hubby and two dogs and three cats, but it is gonna feel really good to get away for a week alone.

If you have ANY questions, please feel free to ask. I kept lots of notes. Sis doesn't even remember some of what went on, so notes are good for a care-giver to keep, but she doesn't ever want to see/read them. She went through enough without having to remember it all.

Well, enough for now, hugs and take care.
Terry

I have had this cancer starting in oct.2004 and have had a stem cell transplant at Cleveland clinic and have done wonderful. I had a few bumpsn the road. I was getting R-CHOP regimine and had methotrexate injections in my spinal fluid. I had a lung reaction t5hat put me on a ventilator for 3 weeks but came through it all with flying colors. You have to ethe faith and a positive attitude no matter what. Hope things are going well for your Dad. God Bless Jack

WOW---I forgot that I had even posted here and thank you for the replies. I do apologize for the delay in getting back, but like I said, I just started going thru my favorites and came upon this site and saw my post that I didn't even remember that I did.
So the news with my dad (and a lot has happened since then)...he does have mantle cell. Diagnosed stage IV in the bone. Had port end of October and soon after, first chemo. He had 4 rounds of R CHOP and then they decided to do a MUGA (heart) scan and another PET scan. Well, his heart muscle was effected by one of the old chemo meds, so he is in the hospital right now undergoing his new chemo. He is now on ES-HAP. The PET scan showed there was still some cancer activity but dramatic improvement. He gets out of the hospital tommorow and will go Monday to an appointment at the Hillman Cancer Center in Pittsburgh (we live in Greensburg-30 miles out). He will meet with a doctor there to discuss stem cell transplant which he will most definitley have with in 6 months. He is doing very well with the treatments. Did not say this before but he is 51 yo. No nausea problems...has actually gained some weight. The only problem he has is when he gets his shot of Neupogen after chemo to stimulate his white blood cells. This makes him very achy and sore in the joints for the next 2 weeks and then he does chemo again. Has not been able to work since October. He used to do construction/pour concrete so with how sore he is it is impossible...applying for disablity benefits. He is in good spirits though, a lot less hair than he had before, but in our family we do not say that he is sick. I tell people at work my dad is in the hospital and they say "is he ok" and I reply that he is just there for chemo "HE IS NOT SICK". What chemo regimen did your sister go thru? ...I apologize if you posted this already. Not looking forward to the stem cell---we are told he will probably be in the hospital (one that is an hour and a half away for this) at least a month. But we know this is our reality...this is what has to be done and it is what "we" will do. Thinking of everyone out there affected by this and waiting on a cure...by the way, has anybody heard word on experimental vaccines for non-hodgkins lymphomas? I know it is out there but don't know how advanced the studies are. Again, thank you!!! Hope all is well.
Amy

Hello
There is a book out there called racing for a cure it is about a nam who had mantle cell and who did not believe in cemo and cured himself from mantle cell with antibodies. He did die but not from the cancer. What I remember from emails from his wife he died from heart problems. My mother has mantle cell and she enjoyed reading this book and it gave her hope and information. I beg everyone who has mantle cell to read this book. My mother is still doing great and has been free of cancer for a year and a half and has had manlte cell for six and half years.
love to everyone
Megan

I may buy that book 'racing to a cure' by neil ruzic and his brother who published second addition I think last month after his brother eventually passed on. I did not know that neil died from other disease ! Another book for MANTLE CELL survivors who 'hopefully' are still alive I mailed one of them and he told me the success story of his 'mini-transplant' which they use low dose chemo. Anthony harrera's book is called 'cancer wars'. Third book by a transplant survivor for MCL is 'The patient from hell' by Stephen H. Schneider who is a scientist and a meteorologist by profession and used his research and engineering background to look for best solution to fight his mantle cell lymphoma.

As for my mother in Egypt, she underwent fourth RCHOP treatment with fatigue and normal side effects, and dr wants to continue to 8 cycles then rituximab maintenance. She has no involvement of MCL in her bones or blood according to first biopsy done prior to first RCHOP cycle.

Should we still consider transplantation of any kind ? Does the ISSELS TREATMENT REALLY WORK?