RE: Waldenstrom's macroglobulinaemia

stresserd and worri scared and the imformaation isnr great

well...nowt happening here

Hi slippers and good to see that you have navigated across to our little corner of the community. I have replied a few times to you before on your other posts but it's good you are finally here.

I am Mike and I help out around our various Lymphoma groups. I don’t have Waldenström’s macroglobulinaemia (WM) but I was diagnosed way back in 1999 with a different type of low-grade (slow-growing) non-Hodgkin lymphoma....... like your WM my type is rare, incurable but treatable eventually reaching Stage 4a so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

There are a few members with WM so let's see if they are looking in. I see in your other post that you are on Active Monitoring (Watch and Wait)....... This is rather normal in the early days with a Low Grade NHL.......... I was basically on Active Monitoring for about 14 years before I required full on treatments....... although my type is a skin NHL so I was having skin treatments over those years as it looked like I had very bad Psoriasis.

Please do tell us more about what you have been told, where your hospital is and as always you can put up your questions and we will try and answer as best as we can.

All the Bold link above are taken from the Lymphoma Action website.

Lymphoma Action is the UK's only Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Lymphoma Online Support Groups for patients...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey. We do have a few folks in the Support Group I attend who have WM.

They 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 chat.

Yes me!!!! Diagnosed 2020, treatment last year, watch and wait again until I relapse.  Physically ok, mentally not great.  Having this messes with your head

my heads pretty mashed up to be honest, watch and wait too but suffering horendous night sweats. Not much sympathy at home either feel like a leper lol

I was just diagnosed with this.

My M protein levels

Were 13g, bone marrow biopsy confirmed wm. More blood taken a week ago, the haematology consultant left me feeling unimportant and uninformed although I am sure it was not intended. I was given no information and left the clinic with no idea when is be called back porker than a very vague "see you in  3 or 4 months"

I'm 68 and have been active all my life. I swim and use a gym 2 or 3 times a week. I think I have a very good diet and don't drink too excess (that might change now, lol). At the minute I feel good bit have me pain in arm and shoulder that may be unrelated.

Hoping for the best, a long period of watch and wait.

God bless you. 

I'm  in the same boat had a watch and wait phone appointment Monday at 9 am...by 3.30pm still never had a call....I rang and cancelled appointment cos I was beyond stress......Still haven't heard anything....think this is a non cancer..cancer...which nobody talks about....my heads fucked!

Sorry to hear this slippers, phone appointments have their good and bad sides.

Do check out the support available through Lymphoma Action as I talk with lots of folks living with WM week in week out ((hugs))

i feel like i dont have cancer...but i do.......just waiting for it to strike i think this is worse emotionally

i know the doctor has more pressing cases but i'm scared and i feel that im being ignored because i was stressed out . i also fractured my back inbeetween appointments.....the doc will know that.....do i just fester in my malignacy?