Non-Hodgkin lymphoma

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Waldenstrom's Macroglobulinemia Doctor-Patient summit

Namod
Posted by

Just wanted to bring the WMUK charity and this years Doctor- Patient summit to the attention of fellow WMers out there.

The summit is on 1st July in London. It gives a chance for WMers to meet doctors invovled in the treatment and research of this rare cancer. 

It's an opportunity to gain information about current treatment options and to hear about the advances in research and possible new treatments. Full details are on the WMUK website.

WMUK is a charity which is working for us, we need to support it as WM is a rare condition. We can not just sit back and wait for something to happen.

I have taken the liberty of taking a small piece from their website which explains part of what they do far better than I can.

We are the UK's only charity focusing on support for patients, carers, doctors and nurses involved in the treatment of Waldenström's Macroglobulinemia (WM). WMUK is a unique not for profit organisation, also a registered charity, developed jointly to bring WM patients and medical professionals closer together to improve the treatment of WM. It was originally set up to deliver an annual WMUK doctor/ patient forum in London. We have a medical board of leading doctors treating WM in the UK (see below) together with patient representatives. Many of the doctors are involved in updating the treatment guidelines for the disease, undertake research  and attend wm conferences.

Apart from providing a point of contact, WMUK is also involved in patient advocacy at UK and EU level. It works closely with the IWMF, based in Sarasota, Florida and the European WM Network.  In common with many other rare diseases, the current economic climate of budget cuts and reconfiguration of the NHS may mean the small numbers of patients, and relatively expensive and specialised  treatment that WM patients need, may put advanced treatments under threat.

This will be the first time I’ll be going to the summit after being diagnosed 2 years ago and having recently completed treatment. I'm looking forward to meeting up with fellow WMers as sometimes it can feel awful lonely!


Ann

Thehighlander
Posted by

Good on you Ann and a full report will follow ;)

Mike - living my new life and trying to make a difference

'Some journeys take us far from home. Some adventures lead us to our destiny' C. S. Lewis

SCT    NHL    T Cell     Community Champion

Namod
Posted by

Ha, ha, I’ll give it a go!

SimLuc2725
Posted by

Dear Ann,

Thank you for highlighting this. I might go also.

Take care, 

Finding my way in the dark... x

Yours, 

Finding my way in the dark

Namod
Posted by

That would be good, the more the merrier.

crosswest
Posted by

Sadly, I can't make it to the Summit but am hoping there will be some online reports that I can catch up with after the event.

austin1964
Posted by

Hi Ann

Any feedback on the event, I couldn't make as got to go on the Odessy course (well worth attending if you can get nominated by your medical team). http://www.odyssey.org.uk

Hope all are enjoying the warm summer

Chris

Namod
Posted by

Hi Chris

The Oddesy course looks interesting. Perhaps you could tell us more of your experience or are you sworn to secrecy?

The WM Summit was good. I'm thinking it probably runs along similar lines each year but I will go again and be more confident about asking questions.

We heard more about the work WMUK does in promoting and campaigning on our behalf. I didn't realise quite how much they did and can not continue to do it without our help. They are asking for more members to make monthly donations and I will be doing that.

We also heard from the various specialist in the field of haematology covering the basics of WM, what it is etc. The treatment, complications eg. Bing Neel, cold agglutinin. Research - CAR T cell and the importance of clinical trials. There was an interesting talk from Dr Iain Jordan on cancer and mental health. It would seem not unsurprisingly, that anxiety and depression are par for the course and knowing that didn't make me feel so alone on that front. They were advocating mindfulness as a help.

They had some WM Patients talking about their experience with the disease, all very hopeful stories 

There were 4 sessions in the afternoon in which you could choose 2 to attend and they were really an opportunity to meet and question the doctors more closely.

We also had the opportunity to sign up for the Rory Morrison registry and spit in a tube to collect DNA. The registry is a good thing to sign up to and if anyone wants to know more should go to the WMUK site. It will help for the future for WM patients, we have to do things to help ourselves.

The best thing was to be able to meet up with other WMers and swop experiences and to see how well we all looked. It was good to hear how others are getting on with their lives, someone mentioned they were off on holiday to Africa!

Ann

austin1964
Posted by

Hi Ann

I was nominated by Macmillan team for Odessy I would fully recommend it, it's a no pressure environment very take or leave it. Sorry can't say anymore than that :-)

Thanks for the run down on the WM day, I was doing six weeks in Africa and three weeks back in the UK, anti malaria drugs are great at masking WM! I ended up with a IgM of 70 and all the usual ramifications...eye's hearing dizziness, within 12 hours of "Yes it's WM" I was in St George's for two days plasma exchange. 6 months before I was living in the jungle two days away from any real medical facilities.

I am under the care of a clinical psychologist and have been since treatment finished in March 2017, I see cancer as the central point of the tornado and all the other life issues I had going round the outside! Cancer seems to bring all the turmoil back (bit deep sorry).

I have signed up for the Rory register and again asked/told my consultant I want my data included, I also offered my services for "Make Blood Cancer Visible"

I think the issue with WM is you go in to devastation mode at being told you have incurable cancer, treatment and you are fine (during the fine time people want to forget about) hence it's a difficult charity to keep consistent.

We as a family have made one off donations, I think Rodger just wants to highlight the more cash that flows the more that can be done.

Thanks again for giving a update from your perspective (You are living it big time)

Chris

Namod
Posted by

Hi Chris

Your guardian angel must have been watching over you in some strange way!

How did you get to a clinical psychologist, through your hospital or GP?

I have only been offered a Health and Well-being one day course and that was hard enough to get, going in September. I'm exploring what the Maggie's centres can offer.

I didn't really worry me too much when I found out about WM as I suppose somehow managed to convince myself that it would be ages before I needed to face any treatment! I had 18 months on W & W and  I have never really felt any symptoms and if I have they have only been mild.

But here I am 2 months post treatment and still waiting too find out what's happened, it's all very real now!

I mentioned at my last appointment that my mental health was not great but all I got was, ”I’m sorry to hear that, have you been to your GP, you may need some tablets to help”. That was not what I wanted to hear.

Ah well onwards and upwards as the say!

Ann

austin1964
Posted by

Hi Ann

Can you find a Macmillan HOPE course near you? East Surrey has a fantastic one (it's designed in partnership with Coventry University). It's 4 hours over six weeks,you might need to travel a bit to get on one. Got a lot of fantastic friends from it as well as some needed life skills.Also push the Odessy course, it will be full but at least for next year. This again has helped me put things in perspective and I now have a even bigger gaggle of cancer mates :-)

I am sure the chemotherapy and the Biological (plus steroids) mess with your mental well-being. Of all the challenges this has been the hardest fight, my clinical cancer medical team was the same....mental health is just a missing part of the care but so important. The blank look when you ask, they are fantastic with cancer and physical health but the mental aspect is not there responsibility (I can quite understand as they are busy enough and it's another specialist feild altogether).

You can tell it's 2018 and even as a bloke I am happy to write this on a open forum, mental health and cancer care is intertwined so deeply.

My companies private health has paid for years clinical psychologist care (Which is fortunate as they really don't provide long-term clinical psychologist cover). I didn't use for my cancer treatment as we all say when you get really sick only the NHS can fix you.

Counselling in my in my opinion is rubbish after what you have experienced, only a clinical psychologist can assit. You can self fund....I think a normal session is about £180 but if you are self funding it would be much cheaper....I am thinking £600 Well spent for maybe 6 sessions...complete guess...but it needs to be a clinical psychologist with experience of dealing with this type of issue. Shop carefully!

Do not underestimate the mental health trorma of being told you have incurable blood cancer and the 6 months treatment you have endured. Give time to recover as well I finished treatment in March 2017 and I feel mended now....happy with the new normal. I can 100% identify where you are on this jurneny I would even say it's normal.

Hope that helps a little, lots of hugs

Chris

Thehighlander
Posted by

Hi Ann  sorry, I just had to jump in as your words "onwards and upwards" ran a bell..

This post treatment journey lark can be as hard as the treatment its self and you will find that the system is not well set up to help people through this. I was supported by a Psychologist before, during and for the 6 moths after my two Stem Cell Transplants and this did help a lot.

I would strongly advise you give Maggie's a good check out. I did the 7 weeks 'Where now" course and found it invaluable. Its was great to sit and talk with folks from different cancer backgrounds and we did help each other walk further along our roads....... but I now know a lot about Woman Stuff!!

I would say that I am a very level headed person with a strong mind set but the course did highlight a few issues that I had hidden at the bottom of the rucksack of stuff we all carry around with us so it was good to deal with them.

I do meet regularly with the Maggie's team Psychologist just to make sure I am doing good as they know that me helping on these forums does mean that I don't get to walk away from my treatment journey but often have to relive some of the hard parts.

........ remember my post a while back about climbing the Scottish Mountain and the choices we have to take....... the more challenging track up or the easy track that gets nowhere..... well its the same with post treatment recovery.

Once you get to the top of the treatment mountain you enjoy the view for a short time..... but very quickly you see another Munro (a Scottish Mountain over 3000 ft) to climb and this is the post treatment journey. Again you can go for the climb and find the view is amazing than the one from the treatment mountain or stay in the foot hills (the top of the treatment mountain) and plod round the bottom of the Munro always seeing the top of the treatment mountain that reminds you of the stuff you just want to get over and done with and to enjoy the view.

Keep pushing the doors to get the help that is correct for you.

This is an interesting paper by Dr Peter Harvey - Life after Treatment you may have seen it but it is worth making a cup of coffee and having a look. I just had a look at it again as I have had a little wobble over the past month as I have officially been discharged from the care of my Haematology/SCT team and they don't want to see me ever!!!... it was like someone had taken my comfort blanket away from me but it is all part of this climb and the view just gets better.

Highlander ((hugs)) Ann xx

Mike - living my new life and trying to make a difference

'Some journeys take us far from home. Some adventures lead us to our destiny' C. S. Lewis

SCT    NHL    T Cell     Community Champion

Namod
Posted by

Hi Chris

Thank you so much for your support and advice.

That's the one thing I got from the WM summit that cancer and mental health are, not unsurprisingly, intertwined. Yes, it almost seems that they need to deal with facts and practical issues and are not sure how to deal with the mental side of things, but so important to how you recover and deal with the future.

You would think with all the talk of mental health in the news.............

I shall look for a HOPE course, I’m in North West London so there must be something around. If not there is a Maggies in Charing Cross Hospital.

Ha, ha 2018 or not it shows how far you have come, even as a bloke

All the best to you

Ann

Namod
Posted by

Hi Mike

I do indeed remember your post but it's good to be reminded of it. At least my head for heights has got better over the years!

I have printed off the paper by Dr Harvey and found it helpful and yes good to go back and revisit it.

Oh, that is good news, especially after everything you have been through, but can well understand the wobble though. 

All the best to you and keep climbing you have some beautiful views in your neck of the woods!

Ann