Diagnosed today with Waldenstrom’s Lymphoma

Hi again  and good to see you have navigated over to this corner of the Community.

I also have a rare type of NHL (see my profile) so completely understand the challenges living with a rare type of Lymphoma brings. But I have to say that there have been so many developments over the years and 22 years on, I am living well and in very good health.

Waldenstrom’s is a low grade, slow growing type of Lymphoma, rather like my type so it will be interesting as to what treatments you have or don’t have! as you could well be put on active monitoring, basically regular checks to see how the conditions is progressing and keep treatment for when it’s actually going to do the best job.

There are a few folks with WM on the group so let’s look for them to pick up on your post.

You can also use the search tool  near the top and put in WM or Waldenstrom’s into this and bring up all the old posts then hit reply and see if the folks get back to you.

You will see a helpful link at the bottom to WM information on the Lymphoma Action site, small UK Lymphoma Specific Charity who have lots of information, videos and run regular regional online Lymphoma Zoom support groups and indeed a great Lymphoma Buddy Service.

Always around to chat ((hugs))

lymphoma-action.org.uk/.../lymphoplasmacytic-lymphoma-and-waldenstroms-macroglobulinaemia

Mike… you don’t know how much your words have given me encouragement and positivity.  I’m a strong female without many of the symptoms associated with WM apart from a bobbing up & down of my anemia & paraproteins. But physically and mentally I feel pretty good at the moment. Hoping active monitoring can continue until the treatment button needs to be pressed to be honest. I will continue to post my journey so more knowledge on WM can be shared.

I have to say you are a legend bow in my eyes.. 22 years.. superb!! Well Done you! So pleased you are feeling well.

Regs

Karen x (hugs back)

Hi KaziB. I got WM diagnosis about 12 months ago when 55. I am a bolk so not quite as special as you are :-). But apparently by WM standards this is still young :-). I had 85% incursion on bone marrow when diagnosed. At time I was struggling to walk up stairs, breathing and generally doing much at all. But I started chemo last Sept and finished March. Obviously you don't feel good immediately after chemo, but even a few days after first course I started to feel better as anemia lessened and I got a few red blood cells back. Thereafter there was a steady improvement after each course. I am now getting back to fitness. Running 5 or 6 miles a day and generally back to normal. Follow up bone marrow biopsy revealed no discernible trace of nasty cells, hurrah. I know its not gone away and it'll be back but the treatment clearly gave it a right good kicking and I feel good again. I pray you have a similar journey. Are you having treatment or are you on Watch and Worry :-). I only lasted on Watch and Worry for a fortnight as my blood results plummeted and they had to start treatment. My advice would be trust your medical team. They're great. Try to stay positive if your on watch and worry. You'll get on top of this thing. If you do end up on chemo; get some good books, some decent music and hopefully you'll get through it fine. Just remember that whilst chemo ain't nice, its doing you good and trust in your medical team. 

Hi KaziB

I was diagnosed with WM in 2017 at the age of 49 my bone marrow biopsy showed a 50% incursion and I was put on watch and wait. My symptoms were constant fatigue bones really painful constant nose bleeds & dizziness.My IGM was at 19 when I was put on watch and wait with my diagnosis after 8 months on watch and wait my IGM had gone up to around 32 which made all my symptoms worse I had a cluster of large lymph nodes swollen in my groin area and constant night sweats. I was put on six months of Bendamustin (chemo} and Retuximab (imuno therapy) while this is not nice stuff it is a lot gentler than some of the other chemos also you don't loose your hair. My IGM is now below 3 and have been cancer free for 3years the only problem I still have is the fatigue and a very low immune system but as long as you listen to your body and rest when you need to you will be fine. Always stay positive and like others say listen to your team never be afraid of asking questions You WILL get through this

Kind Regards 

Simon

PS what was the name of the leading professor ? 

Hi KaziB,

I hope your getting over the initial shock of your diagnosis and you are staying positive and determined to win the challenges ahead of you.

I was diagnosed 3 weeks ago, still waiting for my bone marrow result or rather my “MYD88” result, unfortunately for me I was taken into hospital last week but home now having been given a plasma exchange which boosted my bloods and took out lots of yucky plasma, all these words/names are all newbies to me but I hope to have a treatment plan in place next week.

I am 49, fit but my symptoms were/are fatigue, burning sensation in my legs even on a short walk and horrible night sweats, you have probably been told but watch out for any headaches, and if you haven’t had various scans yet, they probably will happen soon, I have my bloods taken up to twice a week, I always get to the hospital around 8 so there is no waiting around and normally out within 10 mins. (Top tip)

The first week of emotions were a rollercoaster for me and within the last week various procedures I have undergone but that won’t necessarily be the same for each WM patient. Lots of questions went through my mind, many I don’t know and won’t know the answers but I have changed my outlook, stopped feeling sorry for myself and looked at what is important, embraced the support from my family/friends, along with the medical team who have been superb, I ask what I think may be a silly question to the med team, but I don’t care, they keep me entertained but give me the answers. Also, I was taken into hospital last week for trying to continue doing the chores as normal, but this was my downfall so please listen to your body, my kids are now doing chores, little jobs which help me out, small things like bring the washing basket down, taking the bin to the roadside, things we expect to be able to but for fatigue got the better of me and a lack of sleep. 

I am sure you will get the treatment and from what I/we have read, there are new advances, trials of “wonder” drugs which can help us treat our WM.

Unless you are a superwoman there possibly may be some low moments but there is always someone to reach out to, stay positive and you will get through this rollercoaster and challenges ahead.

Best wishes to you KaziB

Fuzzy Bear

Buxtonian, Thank you so much for your message, Great to hear you are doing so well and are the positive side of treatment.  This has given me much hope.  Apart from my progressive anaemia I have no other unmanageable symptoms as yet of WM so yes active monitoring for the next 3 months. Just had my 1st iron infusion to see if this helps stable my RBC. Please keep in touch WM feels such a small community x

So sorry to hear your symptoms are causing such impact to your life’s routine, all things I’m acutely aware will present to me at some point  as WM crowds my bone marrow.  At present I am fiercely positive, I have ‘superb’ physicians and medical team looking after me and managing my case. Once my anaemia can be stabilised then active monitoring commences. 2021 has been a year of Ultrasounds, CT & MRI scans, Endoscopy & Colonoscopy as each has identified something (unrelated to WM) for instance I have 8 Hemanginomas Tumours on my liver!! So I have already had ‘Extensive’ imaging, my MRI after diagnosis was a full Spinal MRI.. not that I enjoy them. But after a liver MRI the Spinal was a walk in the park.  Liver MRI you have to work with the radiologist no just lying still with that one!! Please keep in touch WM can feel a lonely diagnosis as even some medical staff I’ve met don’t know much about it xx Wishing you the very best with your treatment plan xx

Hi KaziB

Hi KaziB

Haven't been on this community page for a while but just happened to see your post. They say WM is rarer in women but I find there are a lot of us out there living with it. Maybe it's that women are more likely to seek support and are willing to talk about it?

As you are finding out WM affects us all differently, it's very difficult to compare symptoms so don't get too caught up in them.

I was diagnosed in 2017, after a raft of scans and stuff, no particular symptoms I was getting a bit short of breath but thought I was just unfit. I had 18 months of W&W before treatment loomed, I had actually persuaded myself that it would be years before I needed treatment, so it really bought it home to me when it was suggested now was the time. IgM was 49 bone marrow infiltration 60%. They shouldn't just take the numbers when deciding on when to treat but how it's affecting you.

I had Bendamustine and Retuximab, it really wasn't as bad as I thought it was going to be, I even managed to keep on volunteering up at the hospital throughout treatment. Again treatment effects us all differently. That was 3 years ago now and my IgM has continued to reduce and is currently 3.9. Still having 3 monthly checks. I live a normal life as do many of us. Believe me you still very much have a life to live.

Please go onto the WMUK site if you haven't already done so, loads of support and information there. We have a Facebook group with loads of support on there. They have recently set up support groups around the country and we have our very own patient support officer in Robert Perry who is doing a brilliant job. Please seek us out.

I wish you all the best

Ann

KaziB How are you getting on. Sorry I have not replied. I have been very busy at work recently. I hope your anemia is improving following treatment. I never had any corrective treatment for anemia as blood results worsened so much they kicked off treatment. When anemic I made a few stupid mistakes at start. These basically all centred around me trying to appear strong and capable in front of my kids. It's not a clever thing to do. When you're weak and fragile you need help. When you feel weak you're weak. Listen to your body and rest. Don't be too brave ask people for help when you need it. I made some daft mistakes. Trying to take aging dog a walk on my own in remote place nearly failed spectacularly on me. There will be times when you need to respect your body and how your feeling. Take time, do stuff at manageable pace and look after yourself. Let others help you and don't be afraid to ask for help. It's better for people to understand how your feeling then they can keep eye on you. Youll get through this. Stay strong and respect what your bodies telling you. This thing we've got is manageable you just need to take your time. Take heart from each good day and rest when you have bad day. Your medical team will help you fight this, trust them they're brilliant.