#venetaclax

I’m nearing the end of 3 weeks break from work and realised it has been quite some time since my last post! I’ll try my best to fill in the blanks since my last post.

After reading back over my last post, I seemed to have under estimated the extent of the gastro-intestional side effects the Venetaclax was having on me. It didn’t seem too bad at the time, I think probably because it almost gradually built up. By the last couple of months before randomisation (I’ll expand on this later), I had lost approximately 10 kilos and was finding I couldn’t manage without anti nausea tablets on a daily basis. Not to mention my handbag full of boxes of gastro stop!

At the end of cycle 15, the trial was due to change into the randomisation phase. This meant I needed to have another bone marrow biopsy and of course blood work to determine whether the treatment had put my body to what they call MRD negative or MRD positive. MRD meaning Minimum residual disease aka how much of those leaukemia cells are left in my body. Dependant on this outcome would depend on whether I continued with both medications, 1 of them or a placebo. I thankfully got the result of being negative!! The drugs had done their job, though this doesn’t mean the end of treatment as it’s a trial. This did mean for me that I’m either only on Ibrutinib or a placebo. This in itself for my day to day well being was a miracle! All the side effects I had been experiencing disappeared within 3 days. I felt my energy levels increase over the week and now, I feel my energy levels are back to where I would expect them to be.

There have been a few emotional trials through the months for many reasons, so I’ve spent a lot of time reflecting and working on how to deal with this with my therapist who continues to be an ongoing support and inspiration for me.

I feel for the longest time now, I have been living with the fear of “what if”. What if I relapse? What if the treatment doesn’t work? I could go on forever listing the what if’s. Though at one of my last appointments with my therapist, something really reasonated with me, “What if it does come back? How do I want to live my life until then?”. I feel like my whole life was full of fear and put on hold, now I’m focusing on what I want in my life now and how I want to spend the time I do have. The shift in the mindset was a miracle in itself. Its a daily struggle to keep myself on track and remind myself of this new mindset.

Apart from the randomisation and my contestant emotional challenges, I’ve had my 3 monthly appointments which all seem to be going well so far. It’s really back to a wait and see momentum. That seems to be the constant for my journey for one reason or another.

So it’s been awhile since my last update though the reason for this is good - nothing notable to write about - until now that is.

Health / physically I’m doing relatively well. I have days where I have low energy and don’t get off the couch though most days I feel normal levels of energy. I have been getting muscle cramping on and off as well though increasing my hydration and also taking magnesium supplements seem to do the trick. I seem to get these hard lumps randomly coming and going as well which I’m unsure what they are though they don’t stay around long enough for them to be checked out. Curious as to whether they are related to the cramping?! The addition of the Venetaclax has also been causing some gastro-intestinal issues from mild nausea and diarrhea. All these side effects are documented for both medications and thankfully all manageable. If this is the worst I get, I’ll take it.

I had a CT scan I believe around Cycle 4 or 5 to see how my lymphnodes, spleen and other internals were reacting to the treatment. My lymphnodes had decreased to 1/4 the size they were right before I started treatment. That was quite impressive! I had another CT scan recently to check on everything again, they have shrunk by another 1/2 again. All very good signs that the cells are being flushed out of my lymphatic system.

All my other blood work has continued to stay at a normal level as well. 

Emotionally and mentally, I have my good and bad days.The biggest struggle is anxiety. I’ve struggled with anxiety since I was in primary school. Of course back then I didn’t know what it was, I just knew it made me feel sick and I didn’t want to face the bullies at school. I’ve had bouts of time struggling with anxiety attacks ever since. It comes and goes with the ups and downs of life. During my last post I spoke about the introduction of Venetaclax to my treatment and the hospital stays I had over 5 weeks. These hospital stays seem to have triggered my anxiety in a big way, for many reasons. The most influential, was being put in a cancer hospital ward surrounded by all sorts of cancer patients. Ranging from those in the exact situation as me to those with only days or weeks to live was very traumatic for me. Ever since I was diagnosed, I’ve never seen myself as being in the same situation as most cancer patients. I was never physically ill, I was until now going through treatment and I’ve always had a positive outlook in regards to recovering. A couple of the hospital stays, I was in shared rooms with 3 other patients, its impossible not to overhear what the doctors and families are saying in the room in such close proximity. Overhearing the stories of what some of these patients were going through was sobering. Although in some ways, it made me thankful of the position I was in, it more so made me come to realize, I was a cancer patient. Even if I didn’t see myself that way. One of the things I have learned through the time with my therapist is that I don’t like being lumped in as having “cancer”. When the average person knows or hears you have any type of cancer, they commonly will think the worst and then I feel obligated to educate them on my personal situation to console their worries. To be honest, this process is tiring and was subconsciously the reason why I didn’t like talking about my diagnosis with just anyone. 

Basically for the last 5 months, I have been working on my mental well being which thankfully as my physical health and the rest of the personal life has been stable, I’ve been able to focus on.

The biggest plus is that I am now on 3 monthly check ups rather than monthly. Although the act of attending the appointments wasn’t a big deal, it was mentally taxing. Hopefully the break in between will help settle my anxiety.

Next steps from here, my next appointment / check up is in about 2 months from now otherwise it’s just on with living life, daily medications, managing side effects and most importantly managing my well being.

It’s been awhile since my last post and thanks to me not saving my drafts this is the third time I’m attempting to compete this!

Cycle 2 & 3 were relatively uneventful. The Ibrutinib was just trucking away doing its job of pushing all the Leukaemia cells from my lymphnodes and bone marrow into my blood. This is the reason my lymphnodes in cycle 1 shrunk so quickly and in cycle 2 my white cell count spiked to 220 (4.5-11 is normal range).

Cycle 4 has been a lot more taxing, mentally more than anything. Cycle 4 meant the addition of the second medication, Venetaclax previously known as ABT-199, into my treatment regime.

Both medications have a list of side effects that could happen though Venetaclax has the possibility of what is called Tumor lysis syndrome or TLS. This is caused by the toxins that are released from the cells that are being killed off. It can cause kidney damage if not dealt with quickly. Due to this risk, for the last 5 weeks I have been admitted into hospital for 2-3 days a week for monitoring.

Apart from a slight raise in my phosphate levels in week 1, I’ve had no issues so far. Over the 5 weeks they increase my dose of Venetaclax from 20mg to 400mg. Due to the slight rise in week 1, they kept my dose at 20mg for an extra week and gave me IV fluids to flush out my blood. Since then, they have increased to 50, 100 and now 200 with no issues. Hopefully the increase to 400 next week will be the same.

When I was admitted this week, I also found out my white cell count has dropped back to normal levels 9.7 to be exact. I haven’t had normal levels in over 4 years. It was around 20 when I was diagnosed.

I have an appointment with my specialist next week so it will be interesting to discuss my progress this far.