Nordic protocol

Hi Ruth, you are now a Lymphomaniac!

I was diagnosed with MCL at age 58 in October 2007, had my Allogeneic transplant in June 2009 and I am continuing to enjoy life.  The protocols these days have a fantastic success rate.

Have to admit that mentally and emotionally I have struggled, even now, but less and less as each year goes by.   Life is for living ay!

There are good folk on this page who will be happy to support you and answer any questions you may have, including myself.

I too meditate, but I did that before MCL.  I love it.  

It would be good for your family to understand that you cannot (or maybe you can :-) ) be positive 100% of the time.  Its difficult sometimes, especially if you look OK, for others to understand what is happening inside.  

Good luck with your treatment :-) x

Hi Sue,

Thank you for your reply.

Love the "lymphomaniac", that made me smile today. 

Your personal story brings so much hope.  It's very encouraging to hear a positive story regarding MCL.  I'm delighted that your doing so well.  

Thank you for your honesty regarding emotions.  My husband has said all along that although it's hard to see me so upset at times, it's very normal and he`d worry more if I showed no emotions at all.

Cheers,

Ruth

Hi Ruth,

I am a 49 year-old father of two who is in the process of being re-diagnosed with MCL, after an initial diagnosis of Small Lymphocytic Lymphoma. I needed six months to accept my diagnosis in March 2014. I liken it to shock. You have to be careful about the Internet and its statistics, most of which are out of date. I recently posted an article regarding the tide of change in MCL. 

My consultant is awaiting results of blood tests and biopsies, prior to deciding my treatment, but I have the indolent variety, which is why I've been on watch and wait. What has anyone said about treatment times?

Hi, 

I'm doing the Nordic Protocol, which is 6 cycles of chemotherapy every 21 days,.  It alternates between Maxi - chop (1,3,5) and high dose cytatabine and rituximab (2,4,6).  On the 6th cycle they'll collect my stem cells.  I have found the treatment tolerable no buckets beside me, anti sickness meds work well.  Hair loss was difficult initially, but when it actually happened it wasn't so bad. 

This should all be done by the end of Nov.  I would lo love if they did the stem cell transplant then.  I know I would recover quicker known that I had to be home for Christmas and Santa's arrival.  It would be great too welcome the New Year with a majority of my treatment done.  I'll see what the Doctors decided, it's all in their hands.  

I'm due to be scanned again after the 4th cycle to see how things are progressing, 

Your right about the internet, I did search a lot at the start, I was looking for information but only managed to scare myself more.  My doctor said from the start it's treatable and if it comes back it's treatable.  

Cheers Ruth

Hi Ruth,

Glad to hear that the treatment's going well. I don't know what's happening with me, but the possibility of six weeks in hospital where I have intensive chemotherapy for two weeks then recover for four has been mooted.

I'm relatively knew to Mantle Cell, having spent most of my time researching CLL/SLL and found the difference between the two to be extreme. There is an abundance of up to the minute information on CLL, with a Forum with 2000 members, whereas with MCL the number of patients means there's much less traffic.

Articles can also be misleading because of the variety of different forms MCL takes. It is always described as "rare and aggressive", but I have an indolent form, and they are only just discovering what to do with such cases. There is also the introduction of the so-called "novel" therapies, non-chemotherapeutic drugs such as Ibrutinib and ABT-199, with others in the pipeline. Again, medics are unsure how effective these will be.

My Consultant offered me an "average" remission of 6-8 years with an autologous SCT and that means anywhere between 1 and 16 years without need for further treatment, which seems much better than you find on the internet (Median Life Expectancy 3-5 years seems to be a favourite). I don't know whether this might help with your emotional state, but he said people are generally over-pessimistic about MCL and he's one of the UK's Leading Consultants. The article I posted is well worth a read to illustrate a more positive outlook. Here it is: http://www.nature.com/leu/journal/v28/n11/full/leu2014171a.html

This is also worth a read:

http://www.bloodjournal.org/content/102/2/749?sso-checked=true

"In conclusion, our regimen achieved complete and durable responses in a very high proportion of patients, thus confirming in a relatively large population of patients that rituximab-supplemented high-dose chemotherapy has a role in the initial management of MCL in a relatively young patient population (up to 60 years of age). We are presently implementing a phase 2 multicenter trial to prospectively substantiate these findings, while the precise role of this high-dose approach awaits direct comparison with novel, competing strategies.^"

Thanks Steve, 

Very interesting reading, I found nhlcyberfamily.org an interesting site also.  These sites are very informative, and help with the positivity.

It seems with MCL each individuals case is very different, it appears that there are many sub-types.  

When I got my diagnosis we were so shocked, we jumped into treatment.  My consultant said we could wait for a while.  We had been waiting 6 weeks for all my test to be carried out and results to come back, I was afraid to wait I just wanted the treatment to start.  

Now I've loads of question, when this cycle is over and I'm scanned again.  I`ll get to sit down and talk to my consultant, I would love to be doing an allo stem cell transplant, this seems to be give a much better outlook for MCL.  It has been mentioned but as a treatment down the road. I would have thought that at my age, in good health and would have been very fit until my diagnosis, now would be a better time !!! Maybe auto will work for me, I need to give it a chance ! This ibrutinib drug seems to work well too.

It will be interesting to see what your consultant decides, you seem to be a lot more knowledgeable than I was at the time, that will stand to you.  

Cheers

Ruth

Hi Ruth,

My waiting was caused because we thought it was CLL/SLL (which it still may be), which is typically slow-growing. It just so happened that indolent MCL follows the same pattern. This meant that I was not, and am not "ill" with it: I continue to work full time and have no "B" symptoms. One thing we haven't spoken about is how you came to be diagnosed, which is usually because you feel poorly.

My consultant took time to explain the treatments for MCL to me, and this is how I understand it. Firstly, FCR and Ibrutinib work quite well on MCL, but the remission isn't very long, or at least not as long as intensive chemotherapy with auto SCT. The auto SCT is because the chemo destroys our bone marrow and so it needs to be replenished, and so it's not really a "transplant" like allogeneic, because it's not curative, it's reparative. In other words, it's needed because of the strength of the chemotherapy.

Allogeneic SCT carries a higher risk, and is to be kept as a last resort because of this. It also carries many more problems like GVHD. However, in many cases, it is curative! I have often thought how tantalising that sounds, but the risk is considered too great to do it as a first line treatment.

Hope this helps,

Hi Steve,

My diagnosis came out of the blue.  I had a lump in my arm pit, that I was told a few years ago was a cyst.  It had grown and I suggested it was removed.   The doctor who removed it suggested a biopsy.  Within two weeks MCL diagnosed.  Refereed to my haemotologist who carried out CT scans, bone.marrow biopsy, PET scan, colonoscopy and full bloods.  Results showed tiny nodes in my groin and colon. None in my bone marrow.

I'd no symptoms, a few nights sweats but nothing that would have alarmed me.  No weight loss, fatigue or illness. I would be fit running and doing yoga a couple of times a week.  Stay at home mam chasing around after 4 kids.  All very normal.

Unbelievable how your life can change in a few weeks. 

Hi Ruth,

That sounds so like me. I felt a tiny lump three years ago. Doctors asked for blood tests, but clear because it was in my lymphatic system. I asked if it could be removed eighteen months later. Doctor referred me to Haematology Department at local hospital. Diagnosed as SLL/CLL. Put on Watch and Wait. Haematologist suggested we start treatment this August, due to its size now (tangerine). My employer badgered me to get second opinion, which I did. New consultant puzzled as to why armpit bigger than anything else (He feared transformation to aggressive lymphoma). Node biopsy revealed inconclusive, but possible MCL; not transformation.

So, my world changed eighteen months ago, and I got used to the change, but it's about to change again, but I don't know what to.