Waldstrom blood cancer

Hi and welcome, first here is a link to some information you may find helpful, as it tells you about your dads type of lymphoma

https://lymphoma-action.org.uk/types-lymphoma-non-hodgkin-lymphoma/lymphoplasmacytic-lymphoma-and-waldenstroms-macroglobulinaemia

The have been a few on here who have it and the was a small group posting at one time, you can search and the posts should appear, re talking it may be either your dad wants to play things down or does not want you worrying or he may be the type of patient who wants to know as little as he needs to so may not have the answers to some of your questions. 

Have you tried to explain you want to understand what's going on so you can help and advise if that's what he would like and ask him how much does he want to share and how happy is he discussing cancer. As you have to follow his lead and respect his wishes which it sounds like you are trying to do at this early stage which is often the most hard part. Once all his tests are done and any decisions re treatment are made that may be the best time to ask some open questions to see how much he wants to share, ask if he needs help are the people there to help and will he ask for it, its those types of questions that can lead to a more open discussion. 

Good luck and ask any questions and if we can someone will try to respond

John 

Thanks very much for replying to me. I will look for other conversations relating to my issue. Thank you.

Hi  and welcome but sorry to hear about your father and the challenges this is bringing on the family.

John has given you some great pointers and at this point the lack of information with be the challenge for everyone.

But once all the parts of the jigsaw is in place and you can try and find out what treatment path he is having we can help you understand this more.

You will see from our profiles that we have been on this road a good number of years and are still around to tell the story and support. My diagnosis with another rare NHL was in 1999.

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

Keep posting as we can help you.

Hi BobbyW

Really sorry to hear the news, if you would like a good understanding of this blood cancer the organisations below are great, they have frequently asked questions documents and a series of YouTube videos that are fantastic. They will also signpost you to the WM country charity organisations:-

• The International Waldenstrom's Macrobulinemia Foundation (IWMF)
• Waldenström’s Macrobulinemia UK (WMUK)

  The good news is that this incurable blood cancer maybe incurable for now but it is very treatable, they say now you are more likely to die with it than of it. You will hear this a lot if you watch the YouTube videos from the IWMF conference.