Final (?) Health Update

This post is more for tidiness than anything, there is not a great deal to report.

I finished my six bouts of chemo on 24 October, having found that halving the dose for the last two sessions made a big difference. We had a nice meal (rib of beef) to celebrate.

Now I have no further treatment scheduled, just a review mid-December. The consultant, Dr Ono, was at pains to point out that Waldenström's Macroglobulinaemia. , (as with similar lymphomas) is not actually curable, and there will be a recurrence at some future point. When, we cannot say. May be a year, may be 20 years. Hoping for the latter, obvs.

In the meantime, I feel perfectly fine. I have been doing 3-4 mile walks without any problem, and in due course will push that a bit further. At some point next year I would like to do a "proper" walk, but we shall see. I see there is a "Roof of England" walk that has been inaugurated, I might go for that. And Offa's Dyke Path has always sounded interesting..

I may add to this post if anything comes out of the December review, but no further updates are currently planned, and I am signing myself off the sicklist for the time being. 

Thank you for reading! 

 

Chemo III - making progress

 I haven't done an update since the beginning of July, so past time for one now. I have had four Chemo Weeks now, with two more to come. Each one has been slightly more difficult than the last, so number four was not at all a pleasant week. 

 

On the upside, my haemoglobin count has gradually increased, and the latest one was over 100 for the first time since records began, at 102. That is excellent progress, and allows me to live a virtually normal life. Not quite enough for the Pyrenees or the Pennine Way, but getting there. For a normal healthy adult it would be 125-150. But the chemo itself has a depressive effect on the haemoglobin count, so once the course is finished it may go up some more.

 

Recently Sue & I went to Tunbridge Wells hospital, for a review with the consultant, Claire Ono. She was very pleased with progress, and said that consequently she could reduce the chemo doses somewhat. She also will prescribe a different and hopefully more effective anti-nausea drug... more good news.

 

I have had the next chemo week now and the halved dose did indeed make a big difference. Not perfect, but much better than the prevous one. And haemoglobin up to 108, to boot. Once the remaining chemo treatment is completed, no immediate further treatment is proposed. We will adopt a watching pose, and wait to see what happens. A resurgence is likely, but who knows when? It could be a year, it could be ten - wait and see. A review, every three months or so.

 

So overall, a very optimistic situation, and hard to see how Dr Ono could have been more positive than she was. One more chemo session, and then we will see...

 

I have had a lot of support, kind comments and good wishes from lots of people, which I very, very much appreciate. And unfailing support as always from Sue, without whom I would be quite lost. She does get to stick a needle in me twice a week, which I think she enjoys..

 

I will do another update, towards the end of the year perhaps unless something material happens sooner. Thank you if you read this far!

 

Chemo II - Upping the Ante

Well, the Tuesday walk around the Loose Valley went very well, it was so nice to be back Linton Walking again. I was a bit knackered by the end of the walk but a reviving glass of white courtesy of David & Christine Hill soon sorted that out. Good to see such a decent turnout, too, 21 folk.

 

My haemoglobin count is still stable in the high 80s, so no blood transfusion is required this week, for the third consecutive week.

 

On Monday (yesterday, 30 June) I reported to the Chartwell Suite at Maidstone hospital, a delightful place with really friendly and competent staff. I was given an explanation of the ins and outs of the new chemo. I had been expecting to start it there and then, but instead I did have an intravenous drip of Rituximab, (four hours) and then two bags of pills and syringes, as follows:

 

- cyclophosphamide, take two lots of four pills per day for five days. 

- an anti-nausea drug, metoclopramide, three pills per day for five days

- Omepazole, a tablet to prevent indigestion, 1 per day each morning. 

- Filgrastim, a steroid you inject yourself with, twice a week. 

- paracetomol, for use as required.

 

Quite a lot to take on board, I had to write it all down and very nearly started a spreadsheet! 

I haven't given links again for these drugs, but if you are interested, Wikipedia has them all. 

With the Filgrastim you are supposed to inject it into your abdominal tissue .. but when it came to that, I was unaccountably not keen to stab myself with a needle so Sue, who had no qualms at all, did it for me. I suspect she quite enjoyed it .. for someone as squeamish as I am, this has beena difficult few months! Must be well into three figures by now, the needle-stabbing events. Although the most painful part of all - so far - has been removing all the surgical tape they plaster on afterwards!

 

Cyclophosphamide is a drug to be reckoned with. I observe that its pages of (thankfully rarer) side effects include necrosis, decrease in testicle and bladder size, and "life-threatening failure of multiple organs such as heart, lungs, kidney, liver etc." With my luck, it would probably be an etc. that fails.. I took the first dose this morning, and so far so good, none of those have happened, but it is early days. 

 

.. so, the first week of this chemo session now completed. Not a huge amount of fun, but not so bad either. Despite the anti-nausea pills I still felt a bit sick as the week went on, but was only actually sick once. One peculiar thing was that on day 2 I found I had put on a kilo in weight, and on day 3 another kilo! What was going on? It seemed to be fluid retention. My ankles swelled up, so had to wear sandals, and on days 4 and 5 I had to pee about hourly, and started to lose it all again .. by the middle of the week following, I was back close to normal weight. 

 Now here we are on Monday 14 July and I feel pretty much exactly as I did before the chemo. My haemoglobin is still stable around 86-90, hopefully the chemo will mean it increases in due course. I will advise any changes, here.

 

 

 

Waldenström's Macroglobulinaemia

 My haemoglobin count seems to have been stabilised, in the higher 80s. The last three blood tests said 86, 89, 88. That is high enough for a relatively normal life, and much better than it was, but not high enough for strenuous exercise. I can manage walking on the flat for a mile or two but hills are difficult, and you can forget the Pennine Way. A count of 125+ would be needed for that.

So when it came time for review with my consultant Dr Oni on 18th, I was keen to find out what happens over the next few months and how it may help. I got rather more than I bargained for!

Dr Oni said she was pleased to be able to tell me that they have now arrived at a definite diagnosis: I have Waldenström's Macroglobulinaemia. Click on the link for more details, and more ridiculously long words .. basically, some of my white blood cells are cancerous and this is affecting my immune system and also constricting red blood cell production (hence the anaemia). It is a rare disease, wouldn't you know? It is a form of "Indolent lymphoma," which sounds much more like me. But the bottom line is that I do have blood cancer, with all of the baggage and restricted outcomes that may entail.

What the hospital is proposing now is a full-frontal attack involving a five-month course of chemotherapy, using a cocktail of drugs: good old Rituximab, cyclophosphamide, and a steroid called dexamethasone. Nothing has been booked yet, and I'm unclear about how many actual dosing episodes are involved ..  it won't be every week for five months, they will space it out.. I'm hopeful that side effects will be limited, the rituximab I had before went well, but we shall have to see what happens. It affects different people in different ways I expect.

 I am reasonably relaxed about all of this; I am still living a comfortable life, and things are as they are; so no point in stressing about it all. The NHS generally and my consultant and Maidstone hospital continue to inspire confidence. I am concerned to do whatever I can to improve the odds, but at present I don't see much to be done. I will get whatever exercise I can, keep positive, and I will keep a close eye on what the hospital is proposing. I found a clinical trial that is interesting, and have asked Dr Oni if she thinks it has any merit. 

Dr Oni replied, as follows: "The RAINBOW trial, looking at R-ibrutinib versus DCR unfortunately completed recruitment last year. I would certainly have supported your entering into it if it were open, as it offers the possibility of chemotherapy free treatment."  So the chemo is now booked, four instalments, three weeks apart. The first one is this coming monday 30 June, the last on 13 October. So that is this summer accounted for!

On the strength of the haemoglobin count I will go on the Linton Walk tomorrow,  26 june, and see how I get on! .. to find out how that and the chemo went, click here!

 

 

 

 

 

Haemolytic Anaemia

 I love walking. I have walked all over, notably in the Pyrenees, and for my sins I run a local walking group too. Fine, except that earlier this year, February maybe, I started to find walking hard work. Nothing wrong with my legs, but I was puffing and panting up hills and eventually, just walking briskly on level ground became a problem.

To start with I assumed I was just out of condition, hadn't done a lot over the winter period, after all... but it got steadily worse until - on one of my Linton walks, embarrassingly - I completely ran out of steam.

Wife Sue drove me home and we went to Maidstone hospital A&E. They were great, I have to say, examined and admitted me within 30mins. They discovered that my haemoglobin (red blood cell) count was 42, which meant an emergency blood transfusion. The haemoglobin count for a healthy adult male is between 135-170. I had six units of blood transfused over the next week, and a battery of tests - they took 17 blood samples, one day!

I spent a week in hospital. Apart from the blood samples they did a bone marrow biopsy (I do NOT recommend these! If you must have one, demand anaesthetic), a CT scan, an ECG, X-rays, etc etc. Basically, they concluded that my red blood cells were being produced as normal, but some form of antibody was attacking and destroying them. 

I will pass over the period from then until the biopsy results were available, at the beginning of May. They involved numerous blood tests, several pints of blood as an outpatient, and a second emergency admittance via A&E. (also admitted within 30 minutes).

When the biopsy results were reviewed, they informed me that I had low level lymphomas in my bone marrow. The consultant said no treatment for the lymphomas was currently needed - they being low-level and all - unless it became clear that they were causing the current problem. 

So for about three months, they tested and supplied blood, but no actual treatment was proposed or undertaken. Eventually, however they concluded that there was probably a link between the lymphomas and the blood problem. It seems that what I have is called autoimmune haemolytic anaemia. A treatment plan was agreed that involved four weekly sessions of rituximab immunotherapy, coupled with EPO. This is currently ongoing. The second and third sessions took place on 20 and 27 May and went well, no adverse reactions. I have a review with the consultant on 18 June 2025 when we will review progress and consider what further treatment may be required.

That is where we are at present. I am living a slightly restricted life - I live on a hill that I can no longer walk up - and have constant feelings of lethargy and tiredness. Holidays and trips, not really on. I am like a clockwork toy: wind me up with some units of blood and I go like the clappers for a couple of days, then start to run down and eventually, grind to a halt. Having said that, when I am on the ward in hospital and look around, I realise that things could be a whole lot worse. The illness has been totally painless, so far; I am still mobile, after a fashion, and can drive. Wife Sue has been an absolute saint, supportive and sympathetic. She would make a wonderful nurse. Maidstone hospital, all departments, and I've been in quite a few, has also been great. Cheerful, supportive and efficient. The Trust has about 7,500 staff and heaven knows how many patients, but it runs like a well-oiled machine. And I know a thing or two about the administration of large organisations. Don't ever criticise the NHS in my hearing.

So we plod on, take things from day to day and wait to see if the immunotherapy has an effect. I will do an update to this log when the chemo is complete, unless something interesting happens beforehand. In the meantime, if you have read this far, your good wishes for recovery are taken for granted. However, I do love to hear from walkers and other friends, so send me an email as often as you like and tell me how things are going with you. I do miss the Linton walks! 

Jerry 19 May 2025 

Updated 25 May 2025

Updated 30 May 2025 

Following my consultant review on 18 June, I have done a new post which you can see here