Waldenstrom macroglobulinemia

Hi Lou4 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.

I don’t have Waldenström’s macroglobulinaemia (.... it's some name so let's use WM for short) but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually (Mycosis Fungodes..... another name) reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different from WM I do appreciate the challenges of this journey rather well.

Your WM is a type of Low-grade non-Hodgkin lymphoma. When I was diagnosed my consultant said that I had to think that I had a lifelong health condition that 'may' need treatment from time to time and unlike some other chronic lifelong health conditions, there are lots of treatment available if and when required..... and the prognosis is good.

My type of NHL like your WM is rare with only about 7 in a million in the UK. I was having skin treatments like I had very bad Psoriasis but it actually took 14 years before I needed full on treatment (you can see my story through the link at the bottom of my post)

You may find that you could be put on Active Monitoring (Watch and Wait), this initial approach is often used for many low grade NHLs and I talk regularly with a few men who have only had minimal treatment over their 10 - 20 years with their WM...... although others do have regular treatments - there is no one size fits all when it comes to Lymphoma.

Let's look for some of the WM group members to pick up on your post. You can also look through the various posts (hit the main group name and scroll down) and as always you can hit reply and ask some questions and see if the member is looking in.

You can also put WM or Waldenström’s Macroglobulinaemia into the search tool  near the top, select 'anywhere' and this will bring up all the older posts and as always you can hit reply and see if the folks are still using the site.

You may want to look at this link Questions to ask your medical team about Lymphoma as it will help you get your questions ready for your appointment with your Hematologist.

All the links above are taken from the great Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc.

They run regular Support Platforms both for patients...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey. The Scottish group I run has a few men in it with WM and they are doing great.

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

They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.

Always around to help more, to answer questions or just to chat

Thanks so much for the response, the skin condition you refer to is something I too am experiencing having had itchy arms for over a year, I've seen a dermatologist twice now, she has prescribed creams and potions and lotions but yesterday felt that it was definitely related to the blood disorder although she admitted she knew little about WM except its rare and normally found in men aged 70+, given I meet neither criteria, I am even more confused.  I really don't like the sound of the watch and wait, is it not better to start treatment before it spreads? I will read the links you have sent although I feel like all i've done for weeks is read and again this can be confusing too although I'd rather be armed with the facts and try and gain some control over my life back :-(

Hi again, Itchy skin is actually one of the Common symptoms of lymphoma....... but my type of skin Lymphoma is completely different as where in most types of Lymphoma growth areas/tumours all happen 'inside' the body with my type of Lymphoma it all happened 'on' my skin.

Because your WM is active inside your body your body's metabolism will be confused so skin problems will come along..... this skin is one of the bodies most reactive organs.

I was on Active Monitoring for over 14 years before I needed full on treatment. It is very important to only treat when the treatment will be most effective...... there are lots of treatment levels but you have a long life in front of you so it's important not to use up the options quickly, just treat when it will do the best job.

By the time I had my full on treatments (Late 2013) I was stage 4 and 70% covered in tumours but here I am over 9 years on living a great life. Trust in your clinical team - they know what to do and what is best for you.

Be very careful what information you read, stay away from random google searches...... that will throw you into a spin.

The Lymphoma Actionsite is excellent and regularly updates...... unlike many google hits that can be many years out of date.

Get a note-book and list the top 5-ish questions you want answers for but you may find you are going to get a lot of information thrown at you so watch you don't get overwhelmed..... are you taking someone with you?.....this is highly recommended in the early days.

Hi, I got my diagnosis or WM on Monday, so can understand how emotional you must feel. We're all different, but I think we will all eventually process the news and get on with giving all we can to help others and enjoying our lives. I am still processing things and am up and down, but feel it is important to do something we really enjoy every day and make plans for the future.

Hi Alacoque and a warm welcome to you.

Lots of useful information for you to look through in my posts to Lou4 

Any questions just ask.

Many thanks Mike.

We are all different but having had chemo for Hodgkin Lymphoma in 1984 and now on bio-targeted therapy for WM I'm a big believer in keeping a positive mindset.

Hope your treatment and management goes well.

Many thanks. Hope your therapy is going well. It can be difficult to stay positive sometimes so I guess this is why a forum like this can be helpful and supportive.

I can't talk about 2023 type chemo but it's got to be better than the effective but distressing 'industrial chemicals 'of 1984.

All treatment will have their own side effects but that's where your meds team play such an important part Not just for the alchemy but the support. 

I play the team game. I'm the player but I have my hospital team manager, coaches, backroom staff and the family/friends supporters.

My current therapy is on trial using bio-targeted drugs ( Rituximab and Ibrutinib) mostly taken at home. Drugs not supported by NICE. I'm in maintenance and what toxicity there is is only grade 1 at present.

Do you have any idea on what treatment regimen you'll be on?

Do your homework and quiz the the Heamo Oncologist on all available options and the pros and cons Of each. 

Keep strong 

Hi, my WM is in the very early stages so fortunately I'm on Watch and Wait, and will see my consultant again in 3 months.

Really glad to know that you feel you have a supportive team.