Waldenstrom macroglobulinemia

Hi  and welcome to this corner of the Macmillan Community bust as always sorry to see folks finding us.

So sorry to hear your mum is going into treatment for WM but lets look for this to go in a positive direction.

We have had a number of folks with WM come through the group so lets look for them to pick up on your post - you can put WM or Waldenström Macroglobulinemia into the search tool above and have a look at the posts, if you see somewhere you feel you can ask a question hit reply and away you go.

The steroids should help her along and just watch out for the post steroid drop when they stop.

The targeted therapy Rituxitmab was part of my treatment, I had about 6 x 98 hours so well over 570hrs and did well with it. I also had Cyclophosphamide at the end of each of my 5 days in hospital, each infusion was only about 30mins and again had no real problems.

Everyone reacts differently and these medical team have seen it all before so will be able to help your mum through this hard time.

Advice?

She does need to drink a lot of water as this is the best way to flush out the toxins released by the treatment and protect her kidneys.

Nausea can happen but she must not suffer this in silence - tell her team as they can change meds, it is trial and error initially.

Fatigue will kick in over her cycles. I also have Osteoarthritis and the most thing was sitting and laying in bed. So from day one my nurse told me I had to take my chemo pumps for a walk after every meal...... this made a big differ and actually helped overcome some of the fatigue.

Food during treatment she is basically on an expectant mum's diet - tell her that one lol

Avoiding Infections is a big deal so a thermometer is her new best friend and just keep an rye for her temperature going over the threshold set by her team and when it does you call this is - don't delay.

I had rather different journey - hit my community name so have a look but after a long 21 years I am doing great.

I am always around to help out as best as I can.

Hi Jo, if you look on the lymphoma action site you will see they are having a webinar on Friday 19th June, you have to register to log on to it, but may be worth doing as its about WM and living with Covid 

Re treatment have they discussed this with you and explained the is a 50-50 chance she may have an allergic reaction to Rituxitmab ? some do some don't. Nothing to worry about as the nurses know what to watch for and what to do if she does, if she does it normally means a slower infusion so plan for a long day, just in case.

The are a few WM patients so hopefully they will add to the discussion and share their experiences

John 

Hi John

Thank you for your reply and I'll have a look at the webinar.

Yes, we have been told about the treatment and that she will be in for 6 hours on Tuesday. I doubt I'll be able to stay with her during the treatment but will be staying overnight at home to make sure she is ok.

Thanks again

Jo

Hi Jo2302

I was diagnosed with WM in 2017 and was put on watch and wait unfortunately my symptoms worsened and I was put on six cycles of rituximab and bendamustine the rituximab is a imunotherapy and works very well for WM the bendamustine is chemo

It all works very well and I have been in remission since 2018 while your mother is on the treatment make sure she keeps away from people as her immune system will be very low throughout the treatment and keep monitoring her temperature if it goes high she will have to contact the hospital as this could be a sign of sepsis and will need urgent treatment  your mother must keep her fluid intake up as this takes the pressure off the kidneys and liver I always drank lots of water while on the treatment and after

Good luck with it all the best thing is to be positive and always ask questions if you need to also there is lots of great people on this site that will always offer good advice

best wishes

Simon