New here… hi everyone

Hi again Nictx and a warm welcome across to this corner of the Community although I am sorry to see you joining us and to hear about your WM diagnosis.

As I said in your post in the New to Community I am Mike and I help out around our various Lymphoma groups. 

Lymphoplasmacytic Lymphoma (LPL) is a rare type of Low-grade non-Hodgkin lymphoma…….. with Waldenström’s macroglobulinaemia (WM) being the most common type of LPL. 

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)….. your WM is about the same 8 in a million rare as my Lymphoma.…….

I eventually reached Stage 4a in late 2013 when a second, more 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.

There are a few members in the group who have WM so let’s see if they are still looking into the group.

Have you been told the ‘exact’ name of the Chemo you are having?….. for example my chemo was called R-EPOCH.

As part of my many treatments (My story is rather complicated See my story)…….. my very aggressive R-EPOCH was over 6 cycles. This had me in hospital 5 nights/6 days on my 2 IV pumps 24/7 for over 120hrs….. and honestly I did not have any significant problems.

As an encouragement when I was first diagnosed our daughters were 14 and 18…… I continued to work for 12 years in a demanding teaching job and yes had various treatments over the first 14 years then in late 2013 I had to have 3 years of full on treatments…..

But we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turn 69 in Nov and am now a few months away since my last treatment 9 years back and we continue to look forward to what else life has in store first us to enjoy.

Thanks so much for replying, you are an inspiration and I hope I can be strong like you and fight this. I am unsure what type of chemo I am having, hoping to see the consultant this week and find out. I know I am having immunotherapy but that’s as much as they have decided as of last week. I will let you know once I know, any info is so helpful and much appreciated. Thank you 

Hi again... Immunotherapy is rather different from Chemo so it will be interesting to see what you are having.

Getting clear information at appointments can be had but you may find these two links helpful....

Top tips for getting the best from your appointments

Questions to ask your medical team about Lymphoma

Finally found out what treatment I am likely to have its BENDAMUSTINE-RITUXIMAB. I have now been transferred to the care of the Royal Marsden as the other hospital could not get hold of the immunotherapy I needed. Do you know much about this type of treatment.

many thanks for any advice 

Nicola 
 

Hi again Nicola Nictx …… good to know what you are having.

B&R Bendamustine and Rrituximab are extensively used for various NHLs including your WM.

The Bendamustine is chemotherapy with the Rrituximab being a targeted (biological) therapy.

I had a few other chemotherapy drugs but I have had Rituximab as part of my R-EPOCH.

As for the journey?.... if we line up 10 people on the same treatment for the same NHL we will get 10 different stories...... as the Side Effects of Treatments can be ever so different.

My great CNS initial words were “……Mike you can read all the information available and then start to catastrophise that every side effect that you have read about will happen but the reality is very often rather different….. take each day as it comes, celebrate the good days, endure the not so good day”…… and she was spot on.

I had my R-EPOCH back in late 2013/2014 and honestly I did well during it all and this was with me having 6 cycles that had me in hospital 6 nights/5 days on my 2 IV pumps 24/7 for over 120hrs each treatment........ from what I have heard B & R is very well tolerated.

You may find this link helpful as it is a collection of top tips for going through treatment…..

Top Tips for the day of your Chemotherapy

These are some of my simple tips.

Nausea may be a challenge, but remember you must not to suffer in silence as there are lots of tools available - but your team need to know how you are getting on as at times it is trial and error to get the right one. I was only sick once during my 750+ hrs of main chemo and this was down to a bad food choice…… I just wanted some takeaway food….. believe me it’s not a good idea.

Cancer-related fatigue may well build up over time so take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue..... the less you do the longer the recovery.

There is a real Risk of infection so care needs to be taken to control infection contacts. Generally it takes about 48 to 72 hours for the body to break down and/or get rid of most chemo drugs.

But the effects of the chemo on growth areas and your general immune system will last for weeks and is important to remember that you may well be more open to infections at about days 7-14 as this tends to be the window when your immune system is at its lowest……. then the body recovers in time for the next cycle….. but the more chemo you have the longer the recovery can take so by the end of treatment it could take a few months this to recover completely.

I was given this simple rule for keeping eye on infections…… If my temperature is 37.5°C, repeat in one hour. If my temperature has increased, whether I feel unwell or not, I must contact the hospital.

I would also highlight the importance of drinking lots of water (the aim is 2 litres every day) as this will flush out all the toxins released by the chemo, protects the kidneys and keeps him well hydrated.

It is VERY important to have accurate contact information/names/numbers for reporting in issues especially during out of hours and weekends.

There is no need to be a hermit….. you can go out. I would meet up with friends in a quiet corner of a burden centre….. fresher is a good healer……. The main thing is check that folks visiting you at home are not carrying a bug…. coughing, sneezing etc….. and open the windows and let some fresh air in,

Thanks so much again for your honesty and support. I will just deal with whatever comes my way but I will try not to worry until and if it happens. Hoping to get this started soon so that I can get better soon and enjoy life again. Thank you 

Sorry to hear of this unplanned journey! Bendamustine-Rituxan is the new standard for B-Cell Lymphomas, having shown excellent results. It is less toxic than prior regimens and more targeted at the cancer cells.

   If you can, consider viewing this as a challenge. It is a war and during times of war, it is amazing the resolve that we can muster. I focused on the people I met, the places I went and the experiences I had. All were enriching in some way. While no one would choose such a path, I found amazing support all through it.

Hi Nicola

My husband Peter was diagnosed with Waldenströms Macroglobulinemia Feb 2023. He had the BR programme, same as you will have. Bearing in mind we are in France, that is the current standard combination for this type of Lymphoma. Peter had 2 cycles of Bendamustine and 7 Rituximab, and has been on "watch and wait" since that treatment finished last July. Since then, he's had monthly blood tests, and depending on the results, either nothing is needed, or if low leucocytes, I have a prescription I can take to chemist for Filgrastim, which is a three day course, administered by our equivalent of the district nurse who comes here to the house. That boosts the leucocytes, so no further treatment is necessary. The chemo wasn't too good for Peter, but he had anti sickness drugs which worked well. He's almost "normal" now, but does tire more easily than before diagnosis, although the doctors here said he had probably had it for quite a while, possibly years. He's 67, but even at that age, response to the BR has been very positive.

When he was diagnosed the doctor who told us said if he had to have a cancer, he'd choose this one as it's very treatable and can be controlled "for many years".

You'll be fine, so long as you don't expect to be able to do what you normally do without being tired. Everyone is different in responding to the treatments etc, but bear in mind there are other treatments available if the first round isn't as successful as you would hope for.

Best wishes, keep in touch

Andrea Wild

Hiya

One thing I forgot that has been mentioned in here, is your immune system will be very weak as treatment progresses. Peter caught Covid which resulted in hospitalisation, so taking as much care as possible to protect yourself from infection is important. We both have 6 monthly covid "vaccinations", also for flu, and I keep covid test kits here if he appears ill. But he also has a daily dose of antibiotic and a daily dose of anti viral medicine to take as a preventative "treatment".

Andrea xx

Wow you have not had an easy ride but the fact you can still be positive is something to be proud of. Please keep me posted on how you are doing, I send you prayers and positive vibes and I will take on board what you have said. Thank you for sharing your story.