mantle cell

Hi again BIDDYMOO and a warm welcome across to this corner of the Community although I am sorry to see you joining us.

I don’t have Mantle cell lymphoma but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

The PET scan will help 'stage' you......... it is very important to understand that the Staging in Lymphoma is rather different from sold tumour cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not. I was stage 4a back in 2013 and it made no difference to my outcomes.

Staging in Lymphomas identifies…..

1) Where the Lymphoma is presenting in the body (it can be anywhere)

2) What is the best treatment approach and best treatment type for your presentation

3) How long your treatment needs to be.

Your initial journey sounds rather familiar as I had no B symptoms, although I had a developing rash on my back...... so I was basically on Active Monitoring (Watch and Wait) for about 14 years before I needed full on treatments..... although I did have to have skin treatments as my Low-Grade NHL was a skin NHL so it was rather like living with very bad Psoriasis

I have never use the term Watch and Wait as I find it to be negative....... I much prefer the term Active Monitoring as it is far more supportive, forward thinking and acknowledges that we are being looked after.

You need to get ready for your first appointment so these 2 link will help you do this.....

   Top tips for getting the best from your appointments

   Questions to ask your medical team about Lymphoma

If you have any questions do ask them and I will do my best to help you out.

There are a few active group members so lets look for them to pick up on your post....... but do have a look through the group discussion threads.

Hello there Mike 

Thank you so so much for replying and sending that information. I am extremely grateful. 

You sound like an amazingly resilient guy and you are an inspiration to many I am sure. 

I am terrified about Tuesday as I fear they will just tell me I am Terminal. I don’t know if this is a normal response or if some of the things I have read on Google haven’t helped. 

My Consultant said when he rang that although he didn’t have the PET Scan results yet but he felt the most recent CT Scan wouldn’t be much different and therefore he feels they may have caught it early…? He just said we will have a good talk and make a plan together. So it’s all up in the air really. 

thank you again 

Hi again, yes you may well have been searching some of the unhelpful areas of Dr Google……. Stick to the links I have given you as they are from the Lymphoma Action website. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

You would think that if your were actually facing a terminal diagnosis that your consultant would not have mentioned Active Monitoring…… over my years I have had lots of phone calls and a few were to tell me that I had an appointment at 9am the next morning.

Do read through the 2 links about appointments and get your top questions ready for your appointment.

Hi BIDDYMOO Biddymoo, it sounds like we are in a similar position.  I was going to post a "hello" post, but think I'll reply to you as we seem to have some things in common.

I'm male, 54, fit and healthy normally.  I had a lump in the roof of my mouth, which has been there for 2 years.  Recently biopsied and came back as Indolent Mantle Cell Lymphoma.

My world fell apart when I was told!! I thought "jeez, I have cancer, that's me done then!" and was sobbing "I don't want to die yet!" to the consultant in the hospital!

Since then, I've spoken to both Macmillan and Lymphoma Action to get some information and support.  Whatever you do, do not Google this condition!

Since that original diagnosis, I've had a PET scan, which highlighted a two small lumps, (<1cm), one in my neck and one in my groin.  I'm completely asymptomatic.  

I've also had a bunch of blood tests (I feel like a pin cushion!) and also a bone marrow biopsy.  Initial blood test results are OK, some markers were concerning so more blood tests have been taken.

Results from all of these further tests and the bone marrow biopsy are awaited as I write this.

Information can be slow in coming, and the waiting is sometimes painful.  I've been back working part time, in a bid to try and look after my mental wellbeing through all of this.  

I don't know full results yet, nor my prognosis.  I doubt I'll ever really have a proper prognosis, as it's so unpredictable.

However, for now, it's important to stay positive.  Please ping me a message back to share your experiences.  I'm learning the importance of support!

Hi Steve1970 and a warm welcome to you….. glad that you have been in contact with Lymphoma Action as there is a lot of support and information available through them.

Getting a good understanding of your type of Lymphoma is very important as is talking with others who are walking the same journey.

Lymphoma Action run various Support Platforms….. I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey.

They also have a great Buddy Service where people can be linked up with someone who has walked the same treatment journey…… I Buddy for them covering my types of Lymphomas and Stem Cell Transplants 

And as you know the LA helpline is open every week day from 10 till 3 on 0808 808 5555.

Thanks Mike

Hello 

just an update 

Saw my Consultant Tuesday. He was truly amazing and kind so I am grateful for this. 

He said I have low grade stage 2. Just in my neck and one in armpit. He said I was physically fit and well and would be a candidate for intensive treatment when I needed it. He has put me on Active Monitoring and said we will catch up every 2 months. He said he knew the mental health side was difficult and I admitted I have felt suicidal. I’m not proud of this but it’s how I feel at the moment. I just hate what I am putting my family through….

He said my prognosis was good and it is many years - I didn’t press him on that but I wish I did now  He also said that treatments have developed remarkably in last 15 years and by the time I need treatment new therapies will be used. I think he means non chemo.

my prognostic score was 0 which is good as he said I was strong fit and well and had a good heart.

I told him I had Goggled and he said that was not good. I wish I hadn’t.

i just feel lost still and don’t know what to think for the best. This waiting thing is weird isn’t it.   

Hi again BIDDYMOO …… so based on your post from a 8 days back where you were convinced you would hear the word terminal……. this is most certainly not the case and with this demon put to bet…….. you now have good foundation to build on going forward.

You need to believe what your consultant has said….. as you know I have been treated for 2 very rare types of T-Cell Lymphoma…… in 8 days it will be 9 years since I had my last treatment….. at that time in Oct 2015 it was seen the last role of the dice with no fall back….. 9 years on there are now a few new treatment for my lymphomas and non are chemo….. 

Way back in 1999 when I was first diagnosed my consultant said that Lymphoma is a cancer that you most likely will not die from but will live with it until my time is up.

As an encouragement when I was diagnosed 25 years ago our daughters were 14 and 18…… but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turn 69 in Nov and we continue to look forward to what else life has in store first us to enjoy.

’Talking’ with others can help a lot so as in my early post you may want to check out the Lymphoma Action links I gave you…… Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment……. No need to do random Google searches LA information is all you need.

They run various Support Platforms… I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey.

They also have a great Buddy Service where people can be linked up with someone who has walked the same treatment journey.

Hello there Mike and thank you for your lovely reply. 

I hear you and I promise I am trying it’s just that I feel I can cope and go through even the toughest treatments but this Mantle Cell is  not like the others is it? 

it feels like there is no point even trying to beat it back as it will come back very soon according to the internet so I just feel I am dragging it all out to no avail and dragging my lovely family through hell. 

if only I hadn’t googled it……

But I also seem to remember Lymphoma Action saying online and in their booklet more or less the same and they mention palliative care in the back pages  

Its one thing to know you have a battle ahead but to be told it might fail quickly it’s a lot to cope with.  It just makes it all feel futile. 

Do you see what I mean? 

In the Lymphoma Booklet it’s saying MCL is high grade and low grade.  It says high grade Lymphomas are easier to treat and possibly cure  then says low grade are slow growing and harder to deal with.  So which is MCL? The Consultant gave me the Low Grade Booklet and it goes on about managing it and people can go in for years like that with treatments now and again and some treatments are gentle….. it’s so confusing in their booklet  

It also says Radiotherapy is used on early stage like mine so I should have asked why I can’t have that? 

my head is still all over the place as you can probably see and sadly the Lymphoma Action booklet didn’t help  unless I am reading it wrong? 

I thought it was a good thing to have low grade and I could have it treated now and again later on  learn to live with it but then the booklet talks about Transforming!?  Oh my……

Normally I am a tough lady and I face life full on  I have faced alot of hard times but then I get a handle on the problem and deal with it.  With this I cannot get a handle on it.

I admire you and your experience is off the scale but is Mantle Cell worse than your T Cell Lymohoma? The many different types is mind blowing too  

Trouble is I think I have read so much soon and gloom online it has done my head in and I can’t get out from under it.  

I am the Mamma in my Family and they all take my lead so at the moment we are all in the gutter as Mum can’t see her way through this so I am worrying about that too.

sorry for going on but I am only just treading water at the moment  

thank you for your continued kindness  

Hi BIDDYMOO sorry for the delay but we have been out with family and granddaughters for brunch........ there IS life when you have a Lymphoma diagnosis.

Mantle Cell lymphoma, like many types of Lymphoma can be unusual.... and in the case of MCL it often has features of both High and Low Grade so until your MCL develops further the jury is out as to the first treatment will be and when...... so this is why you are on Active Monitoring (Watch and Wait) ......... they will only treat once your condition has progressed to a point where the treatment can be most effective........ treat to soon you waste the treatment.

...... but as your consultant specifically gave you the Low-Grade Booklet, at the moment you see this as being slow growing....... and this is positive.

BIDDYMOO said:

is Mantle Cell worse than your T Cell Lymohoma?

...... well the simple answer is that my 2 types of very rare Low and High Grade T-Cell lymphomas combined is still slightly more rare than your Mantle Cell.

There are a lot of rare-ish Lymphomas but most of the time they are treated in a very similar way, often using the same-ish drugs........ but only when required.

Let's look at this in another way........ say we were talking about you receiving a Type 1 Diabetes diagnosis.... you would be looking at a lifelong health condition that needs monitoring and treatment every day of your life and if something goes wrong there can be severe consequences......... living with Lymphoma.....especially a low-grade Lymphoma is just not like this....... I went 14 years before I needed any full on treatment.

The palliative care reference......... my CNS (Cancer Nurse Specialist) told me that when you are living with a life-long health conditions like say a Heart Condition, Lung Condition, Diabetes...... and yes Lymphoma........ everyone is basically on palliative care....... but palliative care with a little P........ as in this circumstance this is not always about end of life care as many people think.

After my heartattack a few years ago...... I am now on meds for life...... if I don't take them then there are issues so I am monitored to ensure I am living the best life.

Yes you may have treatment and you could relapse........ the longest remission I had in my first 4 years was 9 months......... but this did not stop me working in a demanding teaching job...... and the gift is that there are lots of treatments available when required.

The best thing you could do is connect in with the Lymphoma Action Support Platforms… especially the Newly Diagnosed Programme and the Active Monitoring Support Group or get yourself a Lymphoma Action Buddy there is nothing better than 'talking' with someone who has walked the same treatment journey.

((hugs))