Spoiler alert – it’s working!!

This is an unashamedly encouraging post, because that’s my reality. In the third month of this year long treatment regime, I can see and feel differences, both physically and emotionally. Right at the beginning I want to say again that this is MY experience. We are all different and our reactions to treatments will be different, but I think it’s so important that we share the successes alongside the difficult times. Both are so much a part of this journey we are on together as we live with blood cancer. I truly want to “rejoice with those who rejoice and weep with those who weep”.

I wrote in the first part of this treatment diary that, even as early a day two of treatment, I had seen a remarkable reduction in the lymph nodes around my neck. Here’s the evidence – how it started vs. how it’s going!

As you can imagine, it’s been such a relief to be freed from the pressure these nodes caused around my neck. My fabulous “blood family” certainly noticed and rejoiced with me on our weekly Zoom call.

Week four of my treatment saw the introduction of the Venetoclax tablets I will take daily for a year. Venetoclax is a newer “targeted” medication called a B-cell lymphoma-2 (BCL-2) inhibitor. It works by blocking the action of a certain protein in the body that helps cancer cells survive. Basically it helps cancer cells to die! On of the potential issues of this amazing medication is that it can work almost too well, causing a large number of cancer cells to die within a short period, releasing their contents (uric acid, phosphorus, potassium) into the blood and overwhelming our kidneys. During the first three weeks of infusions I had been given not only preventative antibiotics and antivirals but also an a uric acid medication called Allopurinol, so that it could build up before the Venetoclax started. I had also been told to drink two litres of water a day in order to help flush the toxins out of my body – not entirely natural for me! I quickly learnt to find favourite flavours to add that helped with this, as well as sorting a routine so that I got into the habit of drinking throughout the day. I also learnt to always make sure I knew where the nearest toilet was! I have to say I quickly got used to the routine and I’m now really enjoying feeling more hydrated.

Venetoclax is administered at an extremely low dose initially (20mg for the first week) and the response in the blood is monitored closely. I was asked to take my first dose early morning (7am!) then to go for blood tests at the hospital six hours later. The following day I was told not to take the dose first thing, but to have more blood tests, then wait for a phone call to confirm that all was well before taking the second dose. In some cases patients are admitted into hospital overnight to monitor the effects of the initial doses but, as I am only twenty minutes from the hospital, my consultant agreed to let me go home, on the understanding that I would return if there was a problem. This started five weeks of visiting the hospital three times a week, either to see the consultant to approve an increase in dose, or for monitoring blood tests. I got to know the phlebotomist in the Haematology department really well! The dose gradually increased weekly from 20mg-50mg-100mg-200mg-400mg, the full dose!

Generally my blood tests have been really encouraging. There is a common side effect of Neutropenia, when neutrophils can drop to a very low rate, often requiring treatment with injections. Thankfully this was not the case with me. The biggest issue with my blood was that my platelets really dropped, again a common issue with the treatment I am on. One of the effects of low platelets is increased bruising and my legs particularly became covered in some really interesting coloured examples! The consultant assured me that my platelets would rise and fall during treatment, but that it wasn’t a huge cause for concern. My lymphocyte count had dropped to within normal range and other results were looking good too – I began to realise that this was really working.

Of course the physical side of treatment is only one aspect. Having had a reaction on the first day of Obinutuzumab infusions, I was understandably apprehensive about the prospect of starting this new medication. The night before I was due to wake up early to take my first dose, I slept fitfully and felt anxious. I found myself constantly checking how I was feeling, whether I felt nauseous or unwell in any way. This continued all morning until it was time to go to the hospital for blood tests. When I’m anxious it affects me physically, so it was really hard to tell whether my feelings of slight dizziness and nausea were caused by the medication or my anxiety about how I would react to it. However, when I got to the hospital, my phlebotomist was lovely and chatty, I was able to talk with my Clinical Nurse and my anxiety passed. All was well. How blessed I feel to have such a caring, attentive medical team.

During May we had the most amazing distraction from treatment, in that we became Grandparents for the second time! A little boy to join his two-and-a-half-year-old big sister. Spending time with them all, particularly as restrictions started to be lifted was a joy. It was during these times that I realised I was coping with more activity during the day without collapsing into a heap of exhaustion! These are still early days. I have little stamina and can’t push myself too hard, but gradually I am walking further with my husband and our dog, I’m able to host my family and prepare food (one of my happiest places) and generally I have a bit more energy. I’m also napping less during the day! I started to understand how poorly I had felt before treatment. I think fatigue and the effect of enlarged lymph nodes had crept up on me. We get used to how we’re feeling and it somehow becomes our accepted reality. I’m now just beginning to remember how it felt before this cancer journey started. I’m not there yet but I’m so hopeful. I’m also really thankful for all the research which led to the development, licensing and funding of this targeted drug therapy as a first line treatment option, meaning I didn’t have to undergo standard chemotherapy with all its potential side effects. Cell biology is an amazing thing!

As I write I am in the first week with no hospital appointments since treatment began in mid April – that certainly feels really good! I still occasionally feel a bit “drugged up” with all the medications I’m taking, but generally I’m tolerating them well. I’m on monthly Obinutuzumab infusions now and up to full dose with Venetoclax. I realised recently that all the big “new” things with treatment have passed. I feel grateful and just a little proud of this body I’ve been given. On we go!