Hi @NinaSt you have posted perfectly.
Perhaps write all your questions and ensure you ask all of them when you see your haematologist.
What I would say though is that different countries approach diagnosis and treatment (or not) in different ways and have access to different drugs
Perhaps the internet can be a confusing place with information from all over the world.
Please do let us know how you get on and it must be stressful for you and take lots of care of yourself
Hi @NinaSt you have posted perfectly.
Hi @NinaSt. I can tell from your post how worried you are. @Erica has given really good advice. Write down all those questions ready for your next appointment. It’s really hard but one thing I’ve learnt is that you have to be assertive. Write everything down and if possible, take somebody with you to the appointments.
Please do let us know how you get on
Hi, I’m Alison.
My husband is going through treatment for Waldenströms macroglobulinaemia.
There don’t seem to be many on here with this type of blood cancer but I’m reaching out incase I’m wrong, just looking for others in the same situation.
Hi @Bongobirdy a great big welcome to our forum and you are now both part of our forum family.
I hope people with Waldenström macroglobulinaemia (WM) will post on here.
However I have found that it often does not matter which blood cancer we have, whether we are a patient or family member, we often share the same fears, thoughts, feelings, questions and practicalities.
I attach the Blood Cancer UK website details on Waldenström macroglobulinaemia (WM)
Waldenström macroglobulinaemia (WM) - what is it, symptoms and treatment | Blood Cancer UK
I look forward to hearing more about you.
Look after yourselves and please do keep posting
Hi, my wife has been diagnosed with leukemia in 2020. I’m scared to lose her, but we are enjoying every minute of our time.
Hi @Abaziz0786 I am so glad that you have found us, welcome.
I would have thought it was very tough for you both with your wife being diagnosed during Covid times.
You say that you are scared which seems very natural to me for you both to be.
Perhaps you and your wife write down all your fears, questions and practicalities and talk to her nurse contact, GP or consultant…
Personally I was going through life and thought it was all mapped out life with my son getting married, having children etc.
Now I realise that everyone in this world only has this moment.
Your philosophy sounds good to me.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) 20 yrs ago and I am still enjoying life.
My diagnosis gave me the opportunity to look at my life and what did I want to do and with whom. I now think that the best things in life are free, like family and friends, nature and music etc.
If you would like to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
I look forward to hearing more about you both, so please do keep posting
Be kind to yourselves and look after yourselves
It can be so scary when somebody close to you is diagnosed. My husband felt the same as you.
I think making the most of everyday is so important. And when you need some support - as we all do - we are here for you
Hello @Bongobirdy Alison,
Welcome to the Forum.
I am sorry to read about your husbands diagnosis of Waldenström macroglobulinaemia (WM) - it is one of the rarer blood cancers, so can be a challenge to find others in your situation.
The are some great threads through the forum though, on different issues that people with Waldenström macroglobulinaemia (WM) face. I have found the best way to find these is to use the search bar at the top of the page. Literally just type Waldenstrom and it will list everything on the forum where Waldenstrom is mentioned. (You may have already tried this, sorry if you have, but I am not the best with IT and so only recently discovered this!!) I have spotted a few different forum users linked to Waldenström macroglobulinaemia (WM) this way.
Do get in touch with us if we can help or support you and your husband, in other ways. Best wishes, Heidi.
Hi. I am new to the forum, my name is dave, 41 years old and I have a lymph node on the left groin area, about 1cm, it doesnt cause any discomfort or anything like that. I have had it for 4 years, since 2020.
Hi @MagicMushroom welcome to our Blood Cancer forum.
Have you actually been diagnosed with a blood cancer?
What is your medical team saying about the way forward?
This is a non medical reply, but perhaps one of the problems in diagnosing conditions is when the symptoms are very generic.
I look forward to hearing more about you and really look after yourself
Hi @MagicMushroom and welcome to the forum.
It will be good to learn more about your journey and what you have been told about the swollen lymph node
Hi,I had a sibling Stem cell transplant 6yrs ago,for Acute myeloid leukaemia (AML),it was a perfect match,but I’ve now relapsed and face a second non related transplant.I was obviously devastated this has happened as the Drs all talked about the transplant as a cure and after passing the 5 yr mark I started to believe them.Ive had 2 rounds of chemo and am in remission,so now waiting to see if they can find a donor or the other option is a cord transplant,I would be grateful for any advice/support.Katie.
Hi @KatieB and a big welcome to the forum.
Wow, what a journey you have been on. I can only imagine how difficult it must be following your relapse and facing another transplant must be so tough, especially as you passed that five year
I’m really glad you have found the forum. You will find so much support and it’s a place where you can just say how it is for you.
The support line is great if you need somebody to talk to. I’ll copy the link for you following this post.
Have you got people around to support you?
Please keep posting. We are all here for you x
Hi Nichola thanks for link,yes it’s been a complete nightmare but I have my husband and adult kids who are here for support,I try to stay positive and take each day as it comes but the reality of going through it all again can take me to some dark places.
Sounds like you have a wonderful family supporting you.
The second time around must be so scary because you have experienced it already, bringing it a back to the surface.
I hope others will be able to share their experiences with you X
Wow, that must have really thrown you for 6. @KatieB
You really demonstrate so clearly what an emotional, psychological, individual rollercoaster you have gone through.
It will probably also effect your donor sibling, family and friends
Please do keep posting so we can support you through this.
@Nichola75 has given you the Blood Cancer UK support line and they are also there for you.
Perhaps really be kind to yourself, you have had an enormous shock.
Look after yourself and please do keep posting
Hello, I’m new here, I was diagnosed with monoclonal gammopathy of unknown significance (MGUS) 5 years ago and recently my protein levels have risen but only slightly. The doctor says it not much to worry about as its only risen 3% in 5 years, and I shouldn’t worry until it gets to 15% but at 3% over 5 year does that mean I’ll need to worry in 10 years time?
Hi @Chantelle3 a great big welcome to our forum family.
Firstly I will attach the link to monoclonal gammopathy of unknown significance (MGUS) on the Blood Cancer UK website
MGUS – monoclonal gammopathy of undetermined significance | Blood Cancer UK
To give you my experience, I was diagnosed with another blood cancer, 20 yrs ago, and my blood test results do fluctuate up and down a bit.
I always think we are very complex beings and so many things can contribute to the fluctuations in our blood test results…
I like your logic though, but there seems to be a lot about our conditions that is not logical.
Others might be able to share their experiences.
Please do keep posting as I look forward to hearing more about you.
Look after yourself