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 
Welcome @NinaSt, @Bongobirdy and @MagicMushroom 
This is a very friendly forum, you wonât regret joining
Hi,I had a sibling Stem cell transplant 6yrs ago,for Acute myeloid leukaemia (AML),it was a perfect match,but Iâve 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
mark.
Iâm really glad you have found the forum. You will find so much support and itâs a place where you can just say how it is for you.
The support line is great if you need somebody to talk to. Iâll 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 itâs 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, Iâm 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 shouldnât worry until it gets to 15% but at 3% over 5 year does that mean Iâll 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 â 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 resultsâŠ
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
Hi Erica,
Thank you so much for responding to me so quickly and for your kind words. I had started typing the question a few days ago but didnât press send as I feel like a bit of a fraud, lol. Iâve been reading through the forum, and so many people have significant and multiple diagnoses in comparison that monoclonal gammopathy of unknown significance (MGUS) doesnât seem to be enough to worry about, but I do worry.
My last blood test came with the note âimmune paresis presentâ, and I canât seem to find what that means. I was hoping that someone might be able to tell me. Is this the best board for that question, or should I ask on the monoclonal gammopathy of unknown significance (MGUS) board? Thank you for any help and advice. I have been left to my own devices, and Iâve only once had a haematology appointment in the last 5 years I think my last blood test threw me a little.
Oh @Chantelle3 you are certainly not a fraud on here.
Perhaps it is natural to worry as long as it is not all consuming your life.
I have answered what I would do about your medical question in your other post.
Yes, blood tests do make me anxious too.
Be kind to yourself.
As @Erica said. You are definitely not a fraud and Iâm glad you posted.
Hopefully others will be able to share their experiences.
It must be hard being left to your own devices. I have copied Iâm @BloodCancerUK_Nurses to see if they can help
Hi @Chantelle3,
Thank you for reaching out to us. Your concerns are so very relevant and please never doubt yourself for asking questions. We know how difficult it can be living with monoclonal gammopathy of unknown significance (MGUS) and how much uncertainty it can bring. Therefore i would encourage you to dip into any thread you feel is relevant in order for you to gain as much support form others as possible.
As you will be well aware of- paraprotein levels can rise and fall in monoclonal gammopathy of unknown significance (MGUS) â this is normal. However, if there is a steady or large increase in paraprotein or free light chain, or if you develop symptoms, it is likely your doctor would want to run further tests. Itâs important to remember that your current & most recent increase does not define what will happen in years to come. monoclonal gammopathy of unknown significance (MGUS) can be much more complex than that and it can really be difficult to predict where your protein levels will be in the future.
We appreciate how challenging it can be to live with monoclonal gammopathy of unknown significance (MGUS) but it is important to remember that only 1% of cases will progress to a Myeloma.
For additional support & reassurance never be frightened to talk to your doctor further your blood results particularly if you have specific questions.
Alternatively Chantelle, do always know that our helpline is very much here for you to talk things through - 0808 2080 888.
Best Wishes, Lauran
Thank you so much for you kind words.
Thank you, @LauranBloodCancerUK. Itâs so very kind of you all to come back to me and for your kind words.
Hi My name is Irina, I was diagnosed with Acute myeloid leukaemia (AML) with RUNK1 mutation in June 2023.
After 4 cycles of aggressive chemo last cycle finished in December 2023, I find myself in relapse a few days ago. I am waiting for my bone marrow results in mid March, after that I hope to find out what the next steps in my treatment will be. I am very much hoping that at last it will be stem cell transplant. After reading the Blood Cancer UK stem cell transplant brochure, I wish I had been offered this much earlier in my treatment. I am terrified that it is too late for me now. Best wishes to you all.