My husband has just been diagnosed with MCL to say we are scared would be an understatement- as I’m sure you all know -

Hi Venice8 and welcome across to this corner of the community.

I don't have Mantle Cell Lymphoma but I have been on my journey for over 23 years with my type of rare NHL so I understand the journey well.

So we can help better what have you been told?

Is he on treatment or on Active Monitoring (Watch and Wait) 

There are a few different types of MCL - do you know the type he has?

A cancer diagnosis in the family is so challenging but it's important to understand that Lymphoma in general are very treatable with great results.

Do get back to me as we can chat more and help you to understand this journey more ((hugs))

Hi Venice8 and welcome.

I was diagnosed with Stage 2E Mantle Cell Lymphoma back in May and can completely understand your situation. I think I experienced almost every possible negative emotion in the early days, it's quite a rollercoaster.

My best advice would be as follows:

1) get as much information as you need from your consultant

2) talk to your CNS whenever you need to - they are there to help

3) the various Macmillan forums are extremely supportive; you quickly realise you are not alone and we are all going through very similar journeys. Feel free to ask anything, let off steam when you need to and share your experience with others.

4) join/use Lymphoma Action, another great group of people and a good resource (they also have a great Facebook support group).

The worst part for me was waiting for results of scans and tests, I am now 6 weeks in to an 18-week treatment (MAXI-RCHOP) and am going to be undergoing SCT at some point. I have so far had no real side-effects and am able to carrry on with life in a reasonably normal manner, so there is hope.

Hi LordBully, I don’t think we have talked but good to hear that you are finding the Lymphoma Action FB Group and the Lymphoma Online Support Groups helpful….. you most likely have seen me around.

I see that you have joined our dedicated Stem cell transplant group. This will be a good place to talk with others like myself who have navigated the SCT process.

Hi All

having been told that my husband would have R-chop then stem cell transplant 4 weeks ago after an MDT - we were told yesterday - after a further MDT discussing the same test results - that this is no longer an option and he will have R-B which cuts the expected remission from 8.5 yrs to 4. Apparently this is due to lesions in his lung which they cannot determine are due to the MCL or long-standing rheumatoid.

This has left us confused  - obviously disappointed and upset - but also reduced our faith in the process

Hi again Venice8, the journey can be very confusing as there are often lots of twists and turns before treatment even starts.

The MDT meeting looks at your husbands while medical well-being not just his MCL. It is very important that the treatments used don’t have a negative effect on his general health so it is a balance.

R&B is very effective treatment and I have to say I have talked with many who have had it and they have been in remission for many years and definitely much long than 4 years.

It is expected that MCL will relapse over time but there are other treatment options in place and being developed all the time.

As I said I have a different (incurable) type of Non Hodgkin’s Lymphoma and for the first 16 years the treatments used/available only ever gave me 9 months remission before going onto the next available treatment. During this time I worked and lived as normal a life as I could.

In late 2013 we went down a treatment path (thought to be my last available treatment option) that had me eventually achieve remission in Sep 2016 and I remain in remission to this day…… during the past 6 years 2 new treatments have been developed so should I relapse I have more options.

A can understand why you say that your faith in the process has been reduced, but these consultants are always looking at the very best way to move this forward and care for your husbands whole health not just his MCL.

You may want to check Lymphoma Action who run regular Lymphoma Online Support Groups with a few groups specifically for Family and Carers...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.

Always around to chat and help as best as I can ((hugs))

Thank you xx

Thank you - a great quote! 
(I love quotes!)

x

Hi there. I was diagnosed either MCL on 12 May this year.  It has completely changed my life. I am 41, fit and healthy, with a young family. 

Had my first treatment on 22 June and reacted quite well.  No real sickness but a lot of chest pains and discomfort that has been put down to stress and anxiety.

I'm due my second chemo in 8 days, which is more intense than the first and will see me admitted to hospital for 2 or 3 weeks.  The aim after repeating these two cycle is for a Stem Cell Transplant.

I don't know if reading other people's stories helps me.or not as once i read something negative my mind race's and I forget all the positive stories people have to share.

I wish you well with your treatment.  Please share any advice or tips you have picked up a long the way to help make this journey easier.

Regards

RJ

Hi RJK9 and I see it’s your first post so welcome. I have a different type of NHL so my journey was rather different but I have had 2 Allo (donor) Stem Cell Transplants (SCT) so I know this part very well.

I think talking with people with lived experience can help a lot and I do wish I had know about this community back in late 2013 then into my first SCT in June 2014……as it would have taken all they mystery and unknown out if the SCT journey.

I see that you have found and joined our dedicated Stem cell transplant support group, this is a good place to get first hand experience  stories and have your questions answered by people who have walked the walk.

Welcome, RJK9  - I was only 52 when diagnosed last year and considered fit and healthy enough to get some quite aggressive chemotherapy.  The MAXI-RCHOP regime has 6 cycles, with cycles 2, 4 and 6 involving hospital stays.  I consider myself lucky, in that I can reflect on my treatment quite positively - very little sickness (didn't need to take the anti-nausea medication) and very few side-effects.  Some discomfort with the GCSF injections, hair loss and some tiredness were pretty much my only issues.

I had an autologous stem cell transplant (my own cells harvested and returned after LEAM chemotherapy) in January this year - again, relatively positive post-treatment.  One bout of flu-like infection, one urinary tract infection and plenty of fatigue, but 5 months on and I am in complete remission, starting to return to normal.

Advice or tips?  Take each step as it comes - rest when you need to and keep in communication with your care team with questions / concerns.  Hospital visits will need something to pass the time, the boredom might well be more deadly than the lymphoma or the treatment!  I took an e-reader and loaded Xbox games on the laptop  ;-)

Best of luck and hope you can make some positive stories of your own.