Mantle cell lymphoma

Hi Mumof4boys good you have found the Lymphoma Action Newly Diagnosed Sessions helpful.

 Trixie51 the link below will take you to the information and registration for the Lymphoma Actions monthly Newly Diagnosed Information and Support Sessions.

https://lymphoma-action.org.uk/events/newly-diagnosed-information-and-support-session 

Hi Trixie51 i like mumof4boys was also diagnosed back in June 25 with Mantle Cell and i am also on a watch n wait  . For me the fatigue is the biggest thing im struggling with . i have received alot of info and have read through it but im finding it hard to take it all in . The overriding feeling i am getting at the mo is its like waiting to become ill with no date in sight as to when that time will be . Im still working so maybe thats why im struggling with the fatigue im not sure but with a strong network around me will get me  through it like the network you will have too . I looked at the zoom meetings but they just at the wrong time for me with work . but i will make one soon . 

Hi Dancar66,

Omg I thought it was just me. Ive been soooo tired I put it down to stress and not sleeping well. Im good at an afternoon nap. Just during the night I can go straight to sleep but if I wake I instantly get a busy brain. I have just had a week off but back to work Monday. Im hoping that getting back into a routine will help. Thanks for messaging it means alot and I feel less alone.  

No Problem here to chat and we can do this together . I will share any updates i have . in the mean time take care 

Hi Trixie51,

Yes, bone marrow biopsy will be one of the first on the list, I'm afraid, but a very important one!

I’m glad you mentioned the fatigue, I am always tired too, but my consultant told me it’s too early for it to be the cancer causing it as I am low grade and have too few cancer cells. I’m not convinced though. 
I requested a copy of my pet scan ( as I like to know everything) and there are loads around my body although they are small ( apparently). I’m self employed so have to work else I won’t get paid so I guess it’s a case of just keep going and hope for the best. 
I hope you can make one of the meetings as I found it really helpful to understand “watch and wait” and how to deal with it abit better than I was doing. 

I haven’t had or been offered a bone marrow test. Not sure what triggers that, my bloods are and have always been in the normal range, I was diagnosed after a neck biopsy so maybe that’s why. 

Hi Mumof4boys  the pre-treatment cancer related Fatigue can be caused by many things.

Although I have a different type of NHL….. I continued to work in a demanding University teaching job for the first 12 years after my diagnosis….

My T-Cell NHL of 25+ years is a rare, incurable skin NHL so I had my tumours visibly growing on my skin…… at its worst my body was about 70% covered.

I was getting skin treatment…… like I had very bad Psoriasis but I fitted this in around my timetable……. or going to hospital at 7am 3 mornings a week for 20 weeks.

It took a second rare aggressive T-Cell NHL to appear in Oct 2013 to trigger full on treatments (chemo, radiotherapy and Allograft Stem Cell Transplants)….. but I am 10 years out from treatment and in remission.

Living the pre-treatment world is a balance….. yes I was often tired at the end of the teaching day….. I was fortunate that I had school holidays so was able to re-charge my batteries.

As a family we were very carful to foster a stress free home and social environment…… yes a challenge as our daughters were 14 and 18 when I was first diagnosed.

I ran a very organised and controlled classroom to help reduce the stress that is part of teaching…

Eating a good healthy diet, cutting out caffeine, controlling alcohol intake, keeping active, walking a lot….. fresh air is a great healer…….. and ‘Aiming’ for a good sleep routine…… all helped to control the fatuge.

My first consultant said that when you are on Active Monitoring (Watch and Wait) your immune system is fighting on 2 fronts.

It is doing its best 24/7 to keep a lid on your Lymphoma from developing quickly…… then at the same time it has to do the normal things it has to do in fighting infections etc…… this can add to the fatigue. 

Hi Bullit,

Have you had a bone marrow biopsy i Have been booked in for Thursday next week 

Yes, indeed I had...Succes Thursday!

Regards, Han