A journey through life with CLL

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.

1 June 2017 will forever be a date I’ll remember. This is the day I took my first dose of Ibrutinib. It was rather uneventful to be honest. We were at the hospital all day, mostly due to a delay in dispensing the medication. 

The main concerns or symptoms that effected me were swollen lymphnodes and swollen spleen. My white blood cell count was also raising though it wasn’t as high as some others. the lymphnodes in my neck where the most noticeable and to be honest, they were also making me very self conscious.

Within the first week of treatment, my lymphnodes had shrunk by approx, 50%. Within the first 2-3 weeks, all but 1 that I could physically feel had shrunk enough to not be physically felt. 

Day 10 of treatment, I woke up and noticed a red rash on my neck and shoulder. I woke my husband up and said “I think I have my first side effect”. Within the first 2-3 days the rash got worse - it spread all over my body from my feet to my neck. Every itch was covered in a red spotty rash. Day 2 is when the unbearable itching kicked in.  For the next 8-9 days, I tried everything possible to stop the itching. Telfast, steroid cream, fragrance free moisturising cream even after sun aloe vera spray! After days of trying to seek assistance via the nurse hotline, I finally got in to see my specialist on day 6. She confirmed that it was a drug rash. She essentially explained that my body was having an allergic reaction to the Ibrutinib. By this stage the rash had started to get better. Slowly disappearing. Because of this, she recommended I continue taking the full dose. If it hadn’t have been getting better, worse case would have been my skin would start to peel off (gross I know) and i would have to stop treatment. Luckily, my body got use to the medication being around.

That was the worst of the side effects. A little dry mouth for a couple of days though that also subsided.

In my last post, I talked about what lead me to here. Treatment. Let’s step back a bit and think back to how my treatment options came about.

My husband and I had been living our lives in Sydney. We both had secure jobs, a nice place to live in a great area and started our fur baby family with two beautiful cats. Although it seemed like we were “living the dream”, we both felt something was missing. We just weren’t happy living and working in the city. We tried to balance this by moving into a semi rural area though this just didnt cut it. We often have conversations about what our dreams and long term goals are. We both came to the realisation - what are we waiting for? Why do we continue to live in the auto-pilot lifestyle that is clearly not making us happy? 

In early October, we flew to Canada to commit our lives, love and souls to each other with the thought that “we’ll see how we feel when we come home”. We returned to Australia 3 weeks later, returned to work a week after and told our boss that we’re moving to Adelaide. 3 months later we moved.

As most people do, “Why Adelaide?! There’s nothing there!”. For us, it has everything we need and want for our dreams and long term goals. Family, affordable blocks of land to build our dream home and beautiful land and beaches. Not to mention loads of farmers markets - my favourite pass time. 

The move it self was a fairly easy decision for us though it didn’t come without its fear of the unknowns. Will we still have secure jobs? What will my new specialist be like? Will there be a GP I’ll click with and understand my condition? All of the above on top of just packing and moving caused a fair bit of anxiety. Luckily, we had a place to move to, our employer said we still have jobs and we all arrived in 1 piece. 

Before we even moved, I had an appointment to meet my Adelaide specialist. We clicked straight away. She’s personable and very switched on. At my second appointment, she mentioned that the hospital is going through the process of becoming an “active site” to hold a clinical trial for CLL. She said that she feels its the best option for treatment for me. This replicated what my Sydney specialist had been saying to me since I was diagnosed - “we keep an eye out for clinical trials - its the best treatment option available”. Over the 3 years, since I was diagnosed, no clinical trials came up that I was able to apply for. Often they are for people who have already gone through treatment and the CLL had came back or relapsed or I would purely be discounted on age. Yet within 2 months of moving to Adelaide, there’s a clinical trial that I can apply for. This is where I say - the move to Adelaide was the right move and must have been fate. 

Although I am starting this blog 2 weeks into my treatment for CLL, I feel it’s important to take a look back where it all began and what my family, friends and of course myself have been through over the the year. I often get asked about how I got diagnosed. What signs were there. To be honest, I got lucky. Some people don’t get diagnosed this early as most symptoms can be shrugged off to be related to something else as they can be very mild.

My journey on the CLL road began in August 2013. I had noticed a painful bump about the size of a pea at the base of my skull. If it were on any other place in my body, it probably would have gone unnoticed though this was sitting right at the base of skull which made laying down to sleep painful. Although I thought it was a bit out of the ordinary, I didn’t pay much attention until I came down with a virus which knocked me for 6. I was unwell for about a week so I decided to go to the GP for a check up. 

I hadn’t really had to find a “go-to” GP as yet, as we had just moved into a new area, so I just went to the local medical centre and they booked me with the first available doctor. 

I sat down and explained to him how I had been feeling - lack of energy, this painful bump at the base of my skull and overall just not feeling well. He first suggested that I had a virus (he was right) and to let it run its course. If I didn’t feel better in a few days to come back. I didn’t so I did. He’s now suggested to run some blood tests basically to eliminate anything he can think of. 

I’ve never had so many viles of blood taken in one go in my life. I’m not the best at having blood taken (well I wasn’t then - now I’ve had to get used to it!). I was still not feeling well, I hadn’t eaten, I was feeling dehydrated so yes - half way through I passed out and threw up. I was kind enough to forewarn the blood lady before I passed out - thankfully because for some reason the only chair they had in this room was a bar stool essentially - who ever thought that was a good idea for blood taking?! Anyway, so I wake up now laying on the bed they had there and the lady says to be “I’m sorry - but I didn’t get all the blood I needed”. I just wanted it all to be over after all on top of not feeling well, I just embarrassed myself in front of a total stranger. Anyway, she got the job done and I walked out with my husband who had been sitting in the waiting room completely unaware of what had just happened...

I got a call the next day asking for me to go in and see the doctor - This is never a good sign. I went in and sat down. From here on out is a bit of a blur. All I remember is the doctor telling me that he believes I have CLL and that he is giving me a referral to a haematologist for further testing. The only other thing I remember from the visits seeing him during the investigations was the doctor explaining to me that his brother has CLL and how he has gone through treatment and living a perfectly normal life. At the time, this didn’t help the shock and fear around being told that I had cancer. Now when I look back, I think fate was working in my favour that day when I was booked with that particular GP. 

Over the week following, I was at the hospital multiple times - waiting to see the haemotologist, getting a CT scan, getting a bone marrow biopsy...

After all this, in September 2013, at the age of 31, I was diagnosed with Chronic Lymphocytic Leukemia also known as CLL. For those of you relatively new to understanding CLL, the fact I was even diagnosed with CLL is quite rare. The Leukemia Foundation states that over 80% of the people diagnosed are over 60 and that CLL is rare in people under 40. It is also more common in men than in women. I am the youngest person that my specialists have treated. So when I start asking questions about fertility and the chance of passing CLL to my potential children - I did get a lot of “I’m not sure - I’ll need to do some research”.