Hi,
In 2017 a random blood test highlighted a paraprotein that shouldn't be there. That's when I was first introduced to the Haemotology Dept. Spent years on "watch n wait" with 6monthly reviews & blood tests. Then Covid arrived and the "telephone consults" arrived, more of a courtesy call really. In 2022 a diagnosis of "Periferal Arterial Disease" focused the mind. Cramps & breathlessness. Scans, ECGs, Ultrasounds followed. By May this year I was feeling tired, grumpy, breathless and 20lbs weightless, thought my heart was defective. The 6monthly blood test at 10.30 on May 22nd passed uneventfully until 23.30 that evening. A call from 111 advised I attend A&E urgently. Apparently my Haemoglobin was at 45, not the 130/150 required to function.
Eight units of blood, one of Platelets later, a Bone Biopsy, numerous blood tests and yesterday, July 26th my NHL(WM) diagnosis was confirmed. The treatment plan of (1) Dexamethasone, (2) Rituximab & (3) Cyclophosphamide over 4 to 6 cycles, every 21 days will begin mid August. Increasing daily liquid intake, boosting immune system & eating fresh fruit & veg, hoping for best, preparing for the worst.
Hi coop and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.
I don’t have Waldenström’s macroglobulinaemia but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable 'other type' of Low-grade non-Hodgkin lymphoma Mycosis Fungodes eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
The first thing you notice that some of the 60 types and sub-types of Lymphoma have got some fun names!!!!
I basically had the same drugs (some were different forms/band names) and more during my initial chemo back in late Dec 2013 through to April 2014 and it did the job for me although this was used to open the door for me to go onto Stem Cell Transplant (See my story)
My 6 cycles of R-EPOCH had me in hospital on my 2 IV pumps 24/7 for 5 nights/6 days....... and honestly I did ok with no real Side Effects that can be found in all the information we get given.
Good that you are getting into the drinking thing..... thi is very important as this will flush out all the toxins released by the chemo, protects the kidneys and keeps him well hydrated..... so you need to be doing this every day from this point (to get into the rhythm) and all the way through treatment and out the other end.
It is VERY important to have accurate contact information/names/numbers for reporting in issues especially during out of hours and weekends.
This link will help you get ready for treatment as it's a collection of suggestions from people who have been through treatment and are things that helped them during treatment...... Top Tips for the day of your Chemotherapy
Always around to help more or just to chat
Hi coop I will look up the book. Keep us posted on your progress.
Hi Mike, my appointment to meet the Oncology team, discuss their processes & the procedure for my impending treatment is on August 11th. I'm guessing treatment might commence the following week?
Did you find the book "Radical Remission" I mentioned previously? If so, any thoughts? Trust alls well 
Book is still on my to-do list…… sitting updating all the Food Heath and Hygiene policy for the community protect that I help out with.
Do get back to us once you know the exact name of the treatment as we can have a look and see if others have had it.
So there are few with WM who have had the same treatment so let’s see if they pick up on your post.
I had Rituximab and Cyclophosphamide as part of my R-EPOCH……. 120hrs on each of my 6 cycles in hospital 5 nights/6 days on my two IVs 24/7 and honestly it was all ok.
You may find this link helpful Top Tips for the day of your Chemotherapy
