New Mantle Cell Lymphoma. Watch & Wait versus treatment

Hi Mark and welcome to the site, the is a small handful of mcl people who use the site and post when they see new people pop along and several have had the nordic protocol followed by a stem cell transplant. the is also a separate SCT group when you get to that point which is knowledgable and supportive.

I cannot comment on the genetic info you have shared as some of that is new to me to and for you the is a lot to take in and absorb. Previously once diagnosed with MCL it meant treatment straight away, but as they have learnt more about it over the last 5 to 10 years they now know they are different sub types which are not as aggressive as first thought and in these cases patients go on watch and wait and this can be for years. As this type is slow growing very much like follicular lymphoma. 

So it could be your type of mcl is a slower growing version which means you may be able to wait for treatment, as for whether the longer you wait the greater the chance it may end up in the bone marrow, I cannot say I have seen that become an issue with lymphoma in general. A small handful who have relapsed have then found it in the bone marrow so at this stage I would park up that concern.

Hopefully one of the users on watch and wait will share their story, I had dlbc which is a different type and had rchop as treatment, any questions just ask.

John  

Hi Mark  and a second welcome to the Online Community. I did see your post last night as I was going to bed and quickly came to the conclusion that I would write a lot of tosh - so good morning ;)

John has given you a great answer and I do hope that some of the MCL folks pick up on your post.

There has been great steps forward in the research and understanding of blood cancers and even some of the more rare types of NHL are understood better.

My rare type of Cutaneous T Cell Lymphoma was diagnosed over 19 years back and I lived on the whole a normal working and enjoyable life style. I was basically on Watch and Wait but as my condition presented on my skin I did have lots of skin treatments but I treated it all as having bad Psoriasis.

It was only in the last 4+ years (when I was 57-58) that I had to have 6 cycles of chemo (R-EPOCH) then went on to have two Allo Stem Cell Transplants (SCT) with cells from my brother and also over these years 45 sessions of Radiotherapy.

The decision to go down this route was based on my condition becoming very aggressive so I had no option..... but it did take 14+ years for this to kick off.

A number of MCL folks also hang out in the general NHL forum (link) where folks from many of the 60+ NHL types hang out

John also mentioned we have a dedicated SCT forum (link) you are free to have a look round and get a feel and we do have some folks who have come from a MCL background on the forum.

As long as you feel that you have a good understanding of your condition and based on all the evidence you have been presented you are happy with the route you are taking then great, live life to the full.

But if you still have questions or you are just not sure then get back to your team and talk to them. Make an appointment with the Clinical Nurse Consultant and just unpack your thoughts so you can reduce the buzzzz in your head and consolidate in your mind the route is correct for you.

As a double SCT veteran I would always say that going down the SCT route should never be taken lightly and before that journey is taken a full and balanced understanding of your prognosis with or without the SCT is totally understood. Remember that every case is different so you would get a cross section of answers to a question like 'SCT Yes or No?'

We do have Jane our 'Ask a Nurse' who has a background in Heamatology with specific expertise in SCT so you feel her services can be helpful you will finder her on this link

Please try and stick to sites that are up to date and verified so the Lymphoma Association (link) it great place to find up to date information and we also have a Macmillan General NHL information page (link)

We are always around to help out and be a sounding board.

We are not medically trained but what we do have is our very own blood cancer journeys to relate back on.

Hi mark .sorry u have joined the group .my hubby had 8 cycles of chemo and is in remission.

He was 61 when he found a lump in his neck within weeks it was in his chest wall throat under arms and groin .his is aggressive I think his consultant was suprised how well his chemo went .he  has loads of other problems so he had a 

Few problems with his bloods and ended up with sepsis three times .I would say he went through the chemo much better than we thought .drugs for every symptom now no need to suffer at all .The first thing I did when he was told it was mantle cell was to go on every sight there was .i read up on everything treatments outcomes .Treatments for this disease have come on in bounds .positivity works .my hubby is great he is on an  8 weekly top up of retuximab and it seems to be keeping this horrible disease at bay for now .its a year since his chemo finished and we live in hope .You will be fine I know its hard but 

Honestly dont read anything of more than two years about mantle cell things have improved . Good luck .x Gail 

Thanks John, Mike & Gail. 

Good to hear some of your stories. I've been busy today getting a skin biopsy from my nose, I already have a small cheek Basel Cell Carcinoma. 

You'e made a few interesting points about advances in the treatments in recent years and ability to segregate out MCL at different levels of aggression v indolence. I'll check out some of those links too.

Maybe some other folks will drop by with their stories.

My next appt is Monday so another chance to discuss wait v treat. 

Cheers Mark 

Just an update. Still on Watch & Wait. Next appointment in 4 weeks. Bone Marrow was clear about 5 weeks ago, and blood is normal.

I found the Lymphoma Association site very useful to help me form my questions to ask the doctor. So thanks for pointing out the link. I did come across the NICE NG52 guideline by searching there. And you can download the full guideline at 182 pages if you want detail. Maybe best not read if you are easily scared because all the detail is there. 

Doctor says I'm about half way between indolent and aggressive. I might manage to avoid treatment for a while, but I know it's coming. 

I'll post again with updates as they occur. But thanks again for the help and shared experience. 

Cheers Mark

Thanks for the update Mark and long may this continue.

Managed another few months on Watch and Wait. Now Jun 2018 and still seem to be symptoms free apart from a little bit of fatigue.

My neck did get bigger by 20 to 30 % during May but still on monthly check ins with the doctor  (I see any of 3 doctors and they do seem to have slightly different opinions).

Maybe I'll mange another month or 2. Last visit the doctor did wonder if it was worth starting treatment based on my neck change.

But doctors have also suggested in the past that starting treatment is best when something is happening .

I guess I'd be interested to hear how many different symptoms other folks have had but still stayed on Watch and Wait. And how long for .

Cheers Mark

Hi again Mark, my situation was rather different due to my type of skin NHL. I had 14 years of at times very difficult skin treatments but it was still classed as Watch and Wait....... only once a tumour on my head grew out of control was the day the red button got hit........ but I had no other symptoms.

Update is that treatment is just around the corner. Probably start around end August 2018. 

My neck nodes are a bigger now on right. Maybe starting to appear on left neck. Doctor thinks he can feel something under both arms. Also may have 1 node in groin.

Generally feeling ok ish. No b symptoms. Maybe a bit of fatigue. No night sweats or weight loss. Blood clear. Haven't had another Bone Marrow since the first on around March 2018 which was clear.

CT  scan in Aug to get base measurement of nodes. Possibly repeat Bone Marrow but not sure.

Treatment is planned to be Cyterabine (araC) and Rituximab 6 cycles, with stem cell transplant and BEAM, I think.

We'll see how that all goes. 

Cheers Mark 

You know Mark this will sound odd, but this is all positive....... a clear plan is something to hang your hat on, get your mind into gear and get going with.

I had Rituximab as part of my main chemo and did ok with it. I also had something very close to BEAM leading up to my second Allo Stem Cell Transplant and it is a hit but its only for a few days.

I would recommend that you go over and join our dedicated Stem Cell Transplant (SCT) Forum as you will connect with lots of folks who have been on the SCT rollercoaster and their first hand experiences will be invaluable leading up to , during and post SCT.

Keep us up to date.