My husband was diagnosed with follicular lymphoma in 2003, after watch and wait had successful treatment. FAs forward to 2021, similar symptoms and fobbed off due to covid. Eventual diagnosis of WM and another course of chemo. Symptoms reappeared last year and have been on watch and wait. Have been told that blood trends will mean a start on daily pills in the not too distant future. Have now been to three appointments ranging from 8 - 12 weeks apart. He is getting progressively weaker, losing weight although he denies this, could sleep for 16 hours a day if he was allowed. He has had almost monthly occurrences of gout, which haematology say is unrelated to the WM. Has anyone had a similar experience of recurring gout with WM or NHL?
Appointment on Tuesday, any tips to maybe get started on these pills. Sure they begin with a z but can’t remember the name and he is grumpy if I ask anything to do with how he is and possible treatment.
Hi HarveyBoy and a warm welcome to this corner of the Community although I am sorry to hear about your husband.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Waldenström’s or indeed Follicular Lymphoma but for some context I was diagnosed way back in 1999 at 44 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma).
Eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘types’ are different I most definitely appreciate the challenges of this journey rather well.
Gout is not something I have experienced…… this all sounds very challenging at the moment and it looks as though he making things even more challenging as he is being stubborn…… there is no place for stubbornness…. everyone in the family are involved in this journey and clear information is important.
I will always maintain that in some ways this journey is just as hard for those looking on than it is the person with the Lymphoma.
There have not been many folks with Waldenström’s active in the site lately but let’s see who is looking in.
Are you in the UK?
Always around to chat ((hugs))
EDIT: Is the drug called Zanubrutinib (Brukinsa)?
If you are in the UK you may want to check out Lymphoma Action. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
They run various Support Platforms… and just this morning I saw someone on their Closed FB group (with 5800 members) talking about their positive experiences being on Zanubrutinib.
I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey.
They also have a great Buddy Service where you, yes you and indeed your husband can be linked up with someone who has walked the same treatment journey and can chat with them.
The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.
((hugs))
