New to this....

Hi  and welcome to this corner of the Online Community, although I am sorry to see you finding us and so sorry to hear about your mum.

Your mum has had a hard time and this comes along but you need to understand that blood cancers can be treated effectively. I am now 20 years in with my type of Lymphoma and I am doing good.

Blood cancers are nothing like other solid tumour cancers like the breast cancer your mum had and even the grade/stage numbers are used to pinpoint the exact treatment that needs to be used. I was stage 4 but this made no difference to the outcomes, just the treatment that was needed. Yes, some treatment can be hard work but it is all do-able.

Mantle Cell Lymphoma is usually a fast-growing type of lymphoma, but some cases grow slowly. It can be treated but usually comes back and needs more treatment...... so this will have to be seen as a long term chronic condition.

Here is a good page on Mantle Cell in the Lymphoma Action site. Try and not over google as the information out there is way out of date and not that helpful so stick to the main Lymphoma sites including Bloodwise.

What to ask?

The first step is a note book. The note book is the place where you record EVERY question that comes to mind. The note book goes to all appointments and when the Consultant says ‘have you any questions?’ the note book comes out.

A lot of people freeze at this point and are overwhelmed by information. So you can say ‘yes we have some question’ you go through each question one by one, making sure you write down all the answers you get.

If you don’t understand something you stop the Consultant and ask them to put into language that you understand and remember the record everything they say and again if you don't understand, fold your arms and say 'explained that so we understand' You don't want to be going home after an appointment saying 'I wish we has asked ........'

The note book also helps your sleep!! As these questions often come at silly-o’clock so get the note book out and write the thoughts down and park them - it does help a lot.

I would always recommend that there should be two people at appointments as two pair of ears take in far more and the onlooker will catch the stuff the patient will not hear. I would also recommend that you go have a cup of coffee/tea straight after the appointment and unpack what had been said so that a clear understanding is made and with this you can plan to move forward.

The note book should have questions like:

What type of condition has been diagnosed? - exact name and grade/stage etc.

What are the proposed treatments Chemo, Radiotherapy......?

What are the names of the Chemo Regime?

How many cycles of Chemo and how long will each cycle last?

Does this require inpatient time (over night)

How many sessions of Radiotherapy and how long will all the treatments take?

Remember to express any reservations about treatments........ an example - I have Thoratic & Lumber Spondylosis - Spinal Osteoarthritis so I found out in the early stages of my radiotherapy that I had to take some pain killers an hour before I had my treatments as I found it hard and painful to lay on the radiotherapy table for long periods of time.

This LINK will take you to the pages in the Lymphoma Action about questions to asl.

I see that you have put some info in your profile, well done and you can see our stories by hitting our forum names.

We are around to help you all walk this.

Hi and welcome though sorry to see you joining us, to add to Mikes post one key question is - is mum's MCL aggressive or indolent because if its indolent and slow growing they may offer watch and wait rather than go straight into treatment. As has been said if treatment is needed are the options and if treatment is needed it will possibly be RCHOP which I had or the Nordic Protocol which is a little different to rchop, check it out on this site, Bloodwise or Lymphoma Action (both good sites for information at this stage).

She will need some additional tests if treatment is to go ahead to check her heart and make sure the kidneys can cope with the drugs. They will also be want to do a bone marrow biopsy as its a blood cancer and that's where all the cells develop, so they know if its in the BM then they will need to check it post treatment to confirm remission. 

As to what to say to your mum my advice is just be you, be honest and explain you will get to the bottom of things and will talk her through whats happening and if treatment is needed, what that means, the hospital will appoint a specialist nurse to help and they can support you supporting your mum. Try not to think the worst at this stage as you still need more facts, including a CT or PET scan if she has not had one. You don't say how old your mum is but I know people aged 85 and over who have had rchop for 6 cycles and they made remission for other types of lymphoma and whilst fatigue was an issue they coped and got through treatment.

Once you know more come back and tell us and we can share more then, in the mean time any questions or if you just want to chat then keep posting, we are here to help when we can.

John