waldenstoms

Hei!

My father (53) was diagnosed with Waldenstroms for about 6 months ago. He was not feeling bad ,but he have had high crp level for a long time and he had anemia without any reason. He only got a short phonecall from the hospital, where they told him he did not have cancer and he did not need any treatment. Now he goes to his doctor every 3 month, the doctor says its anough to test him every 6 months but my father wants it this way. Idont feel that we have got anough info about his deases. All they say is that it si nothing to wory about many people live with this diseas.Anybody from Norway who can give us names of good doctors who knows somthing about Waldenstroms? I feel that my father is not beeing taken good care off!!!!  

 

That sad, my father is happy and not feeling seek. I works full time and have no pain,  only he is somtime feeling tiered, but i works alot so that is not strange. My brother had non- hodgkins for 5 years ago, he is now a healty 27 year old boy!! So my family knows how to live with cancer.But its not right that we should go throw this again!!!

 

 

Hi there,

I'm in England,,  but  I was  diagnosed with this nearly three years ago.  I  had a  lot  of  initial tests, including  bone marrow biobsy,  blood tests,  x rays ans many scans.  One they had decided what was wrong, I was  told that this is a  very  slow reacting contition and  it is  not treated in any way while  it  is 'idolent' in other words  not effecting my  lymph glands  or any other organs.

It is frightening to be told that you  potentially  have cancer, and  I started having blood tests every 4  months, then 6  months, and  now as the results remain stable, I don't  need to go back for another year.

So tell your  Dad that 6  monthly  checks are fine, but if  he  feels unwell or  has any worries, he should  tell his doctor.  Althought the condition is not effecting the organs and  will effect the body and therefore  feeling tired  is quite  normal, you have to remeber that.  And he  may be  more  vulnerable to colds,  infections etc., so just  keep an eye on things.

There  is a  lot of  info on the web about this condition,  but  be careful  not to frighten yourself  or  your Dad with what you read - it can be scary.

So good  luck,  and  I hope that your father  continues to have good results with each blood test.

Maggie 

 

Hi my name is mark,i have Waldenstroms, just today i started, a treatment, call Mab Thera,  i have a great DR his name is david jackson, in lismore nsw australia i have known foe over 3 years I started off just getiig tired, bone pain burning feet and sweeting alot, my dr seento know al about it. regards mark (softie)