New diagnosis of Waldenstroms Macroglobulinaemia

Hi again Ally S  and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your husband's diagnosis.

I don’t have Waldenström’s macroglobulinaemia (WM) but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

The Diagnosis process of Lymphoma is rather scary..... it's all the unknown. but once a clear picture is found a treatment plan can be put in place....... then the noise between your ears will start to calm down.

I know many people with WM and they go on to live full lives...... yes they had treatments from time to time but it is all do-able.

Your husbands WM like my first type of Lymphoma is one of the many types of slow growing Low-grade non-Hodgkin lymphoma....... and with most types of Lymphoma it can basically turn up anywhere in the body often at the same time........ but this still all remains very treatable.

Once all the scans are in and reviewed they most likely with stage him........ It is very important to understand that Staging in Lymphoma is rather different from sold tumour cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not....... I was stage 4a back in 2013 and it made no difference to my outcomes.

Staging in Lymphomas identifies…..

1) Where the Lymphoma is presenting in the body (it can be anywhere)

2) What is the best treatment approach and best treatment type for your presentation.

3) How long your treatment needs to be.

As you get ready for his next appointment the links below will be helpful to get all your questions put down in a note book.....

          Top tips for getting the best from your appointments

          Questions to ask your medical team about Lymphoma

You may find it helpful to 'talk' this all through with someone...... so you may want to check out Lymphoma Action. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

The Lymphoma Action have a very good helpline that is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.

But this group is always around to help you out so do ask your questions.

Thank you so much for your support.

The Haematologist has just been on the phone, my husband has to have a course of steroids and an MRI scan before his appointment next week. Although the diagnosis has been a shock I can’t complain about the care.

I have to say that it’s brilliant to have the opportunity to raise my fears and read about positive experiences from other members of the group. A new cancer diagnosis puts you in such a lonely place.

There is no need to be lonly.... the group is always here, as is the Lymphoma Action Support Line.

LA also run various Support Platforms… I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey with one group specificaly for Caregivers.

They also have a great Buddy Service where people can be linked up with someone who has walked the same treatment journey both as a patient and a Caregiver.

Hi Ally

My husband Peter was diagnosed with the same, Waldenström's Macroglobulinemia, 18 months ago. He's had all the same tests your husband has had, and he started a BR (Bendamustine and Rituximab) treatment cycle within a short time from diagnosis.

He's been on watch and wait for over a year now, and apart from some fatigue if we've had a busy day, he's fairly "normal". He had blood tests monthly until September this year, now they are two monthly. We have a nurse who visits to do these. Results come to us by email same afternoon. So far, the only thing is a drop in the leukocytes caused by Neutropenia. When they drop to a certain level, he has a three day course of injected Filgrastim which returns them to normal levels.

I think you'll find of all the lymphomas, this one is often one of the most "treatable". Indeed his haematologist said if he had to have one, he'd choose this one for projected longevity and effective treatment plans!

Oh I forgot to mention we live in France, so it's possible time scales and treatment options may vary a bit, but always around for a chat if you need one!

Good luck, I'm sure you'll both soon get on top of this.

Andrea and Peter

X

Hi Ally S,

I was finally diagnosed with WM 2 and a half years ago. It was very scary and at times I was quite sorry for myself. I'm 70 now. I've always been very fit, gym, swim walk etc as well as my allotment and other outdoor activities. My wife has been very supportive. 

The main measure if no lymphomas are found seems to be keeping the level of paraprotein low as possible. I've been told mine seems steady at at the minute at 13g/litre so treatment isn't indicated yet. Watch and wait is fraught at first. I've now been moved to 6 month appointments where I'm asked about any new symptoms and get blood tests. 

Mostly I feel good but tire quickly in the afternoons. I stay positive and do everything I always did, just a bit more slowly. I  hope your husband stays positive and with your support he will. The WM group on Facebook is helpful and the dedicated WM organisation. There isn't a cure but it's very treatable.

Hi Andrea and Peter

Thank you so much for sharing your experience. It is so reassuring to know you are not alone XXX 

Hi

Thank you for sharing your experience. We've had the Haematologist on the phone this afternoon and treatment starts next Thursday. Not sure what it will be yet but I'm assuming it will be chemotherapy.

It's much easier to be positive and I'm less scared with the support of the people on this group

Hi Ally S ....... you may find the link below helpful as it a collection of Top Tips from the group members on the Lymphoma Action FB Support Group...

      Top tips for the day of your chemotherapy

Hi Ally, I am new here.  my husband had all the tests, bone marrow biopsy and ct scan. Diagnosed with Waldenstroms in July. Symptoms are anaemia, night sweats, fatigue, weakness and poor concentration. IgM 21. On watch and wait but at his December consultation consultant said he was nearing treatment as sweats now every night, asleep in day and evening and affecting daily life significantly. We agreed to have Christmas and my husbands 75th birthday in January and discuss treatment then. We were given written information on Rituximab and Bendamustine. He is currently taking antivirals twice a day pre treatment as well. WM is rare, only 3 per million, about 350 per year in whole of uk. There is also no staging for the disease. It is incurable which we found incredibly scary, however we’re reassured there are very good treatments. Consultant said numbers eg IgM are important but some people have no symptoms with high IgM and others like my hubby have severe symptoms with IgM 21. There is a good support and information on WM at WMUK which have plenty of literature and a wm nurse support line. We’re at the start of our very scary journey and having n formation and support group such as this is great. Good luck. to you and your hubbie. 
https://www.facebook.com/groups/280071106489074/

Hi, great to hear from you and to know that your husband now has a treatment plan.

My husband had vague symptoms, he lost his appetite and had extreme tiredness. We put all of this down to getting older and a reaction to a change in medication for an unrelated issue. His GP carried out extensive blood tests which revealed a slight anaemia and further blood tests showed a raised paraprotein level and he had a diagnosis of WM from a haematologist. Following a further appointment with a haematologist he had a bone marrow biopsy and a CT scan. The results of this confirmed diagnosis but there was an area behind is stomach which wasn’t clear and he was referred for an MRI with probable management being “watch and wait”.

After the MRI he was referred for an echocardiogram to check his heart in case he needed chemo. On the way to the hospital he received a phone call telling him to get there asap and not to drive. The upshot of this was that the lymphoma was on either side of his spinal cord, could be causing pressure and there was concern about neurological involvement.

To cut an even longer story short, he was started on Bendomustine 3 days later and he has had a further cycle of bendamustine and rituximab. His paraprotein level has dropped from 38 to 24 so early indications are a positive reaction to the treatment. He’s managing the chemo and immunotherapy, he feels tired and sickly for a couple of weeks following the treatment but is managing to lead an almost normal life.

He has had exceptional care from his GP, haematologist and the oncology team and although WM can’t be cured, their aim is to shrink the lymphoma  and then manage it which they have said they can do for many years.

It’s been a roller coaster journey so far, John will have a CT scan after 3 months of treatment to measure the impact but we are really positive for the future. 

This group is really helpful, Lymphoma Action are also an excellent resource. Stay positive, best of luck for the future.