Lymphoma questions

Hi again , good to see you have found this corner of the site.

I am sure that some folks will get back to you. As I said in your other post, without a biopsy her team will be treating her on a best guess foundation.

Keep us informed as to how the meeting goes and what has been recommended as a way forward.

Hi, I had a quick look yesterday and the problem with just going on the imaging is it could be a different disease as the are a couple that can look similar, so that would normally be followed up with a biopsy to confirm what it was and what treatment was required.

Has the consultant fully explained the op for the biopsy and is it its a difficult area to get to and has your mum said what she wants or does she not have capacity to do so, as CNS is treatable if that is what it is. 

Its hard to offer advice as each of us had to make decisions and choices that we were happy to make, some of us did so fully informed and others were happy to go with the medical advices, I guess the other question to ask if you have not already is if treatment started without the biopsy how quickly would they know if they had got it right and the treatment was working and if they had got it wrong what damage would it do to the prospects of treating her disease if it was not lymphoma.

Have they started her on steroids to help control the growth as that's something they do in some cases, if not worth a conversation.

perhaps talking through your dads concerns and making a list of pros' and cons' for both choices may help him and your mum get to a decision.

John  

ps forgot to mention they might be able to do tests on the bone marrow as this can be a route as a last resort and not sure if this is an option but would a spinal fluid test be an option, just thinking outside the box for you.

John thanks !

Useful information.

As far as i know my Mum's had a lumbar puncture and blood and bone marrow tested. She's been on steroids as well. Her doctors say 90% they think it's a lymphoma. She had CLL last year. This may have come back. 

She's had a rough few years. Hoping there is a treatment for her. I'll know more later today. There was a meeting with her doctors yesterday.

Thanks again

Some more information from the doctors on my Mum. They are pretty certain she has a PCNSL widespread in her brain. Not a single lump more like tentacles all over the place.  I dont really understand but it sounds difficult to treat. She's not up to high doses of chemo or radiotherapy to the whole brain so we have decided against this. Quality of life and all that. I think it is incureable. 

She has CLL as well and this may have spread to the brain. The only good news was it doesnt seem to have progressed in last 4 weeks.

What she has must be rare. I read that most PCNSL is not common. And it usually develops as a lump in the brain.

Only 1 in 20 cases are low grade.Hers doesnt seem to be growing too fast. She's eating well and up walking around. So lots of conflicting information - its very confusing.

Anyone experienced similar?

Thanks ! 

Thank you for coming back with your update, it can indeed be very confusing, but this can be the nature of blood cancers.

No signs of spread is good new and your thinking that this may now be incurable could be correct, but as always be guided by her team. Incurable but treatable may be the case and worth asking the questions.

As you know we only have our cancer journey to look back on. The mass on my neck was the size of a brick, so took a lot of chemo to break it down..... as you are thinking that her presentation is more like 'tentacles' it may be treatable with low dose chemo.......have they said what the plan is now?

I am tagging a few folks who have posted about PCNSL in the last year , , , , and  just to see if any are still looking into the Community.

Keep hanging in there.

Hi an interesting up date on all that appears to be going on, first I understand the quality of life verses quantity, like you I have had a look at some of the blood cancer research sites and would agree her disease is rare and if its CLL presenting in the brain then ultra rare though as for PCNSL on this site and another the have been a number over the years and most responded well to treatment and are still in remission as far as I know. 

Without the biopsy to be 100% sure it is lymphoma and not something else it will remain confusing unfortunately. Over the years people have posted about doctors being sure or 99% or 90% sure and they turned out to be wrong, we all have lots of examples we could share. Also typing lymphoma can be an art and mistakes are made because of this due to the difference being hard to identify or the way the histology presents. 

I take it the bone marrow or spinal fluid did not give them a steer? or has that led them to determine lymphoma rather than CLL?

If your mum is happy with her decision then support her and your dad, take the time to ensure lots of happy memories are made and all that needs to be said are so that when the time comes the are no regrets. None of us know what tomorrow will bring so always make sure today is as good as it can be.

Hi 

sorry to hear your mum is poorly, if they are suspecting PCSNL then a biopsy is the only way to be sure but this must be done before starting dexamethasone (steroids for inflammation, swelling) as dexamethasone works as a temporary fix and reduces the lymphoma too so it’s then difficult to biopsy.

Before having the biopsy I would find out what treatment they’re offering. The chemo (MATRIX) is given up to 70 yrs of age in the UK. 

Whole brain radiation is an option but not recommended in older people due to the dementia(side effects) that progress after treatment. .

my dad was diagnosed at 65 and had surgery to remove a solitary lump as they thought it was a GBM tumour after they analysed it they changed the diagnosis to PCNSL. He had MATRIX chemo and was clear for 6 months and then it returned. He sadly passed away in May. This disease does relapse more in older patients, the dexamethasone may work for your mum for a while holding things stable but it will not cure. 

Thinking of you at this difficult time and wishing you all well. Please message for any more info as I’m in contact with a group that may be able to advise further. 

Best wishes

nicki x

Hello.

Thank you all for your messages and words of support. It helps. 

My Mum has a rare PCNSL and the spread of it would mean chemo would be the treatment. We dont want any more of that.

The good news is she's not in pain, it doesnt appear to be aggressive. So the family decision is to bring her home. She'll get after care and be at home with her family. We'll focus on making the best of the time left however long that is. 

Thanks again. This is a great website.

God bless you

Ewan

Hi Ewan, well done all for making a clear decision and looking for the very best for your mum, I am sure that she will appreciate what you are all committing to do.

Make sure that you check out ALL the local support that is available through your Community Support Team so talk with her GP or the Support Team in the Hospital.

There may well be financial support for caring for mum so check our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link....... and give them a call.

Caring for folks at home can be hard work, so you may want to check out these forums where you can connect with others supporting family and friends through their cancer journey: Carers Forum, Friends and Family Forum and Supporting someone with incurable cancer.

We are always around to help out as best as we can.

All the to your mum and all the family.

Thanks for the update and I am sure your mum will be well cared for, some further advice is for her and your dad to speak to her GP about a palliative care plan and end of life care plan, I mention them know so that when that time comes your mums care will drop into place and as a family you can focus on your mum and not be stressed trying to sort things for her. The is help when you need it.

John