What is maintenance chemotherapy?

On my social media I get a lot of queries and questions about my maintenance chemotherapy, as best as I try and explain it, it is still rather confusing, so I thought I would make a blog post all about it!

After completing 9 rounds of intensive chemotherapy and 28 sessions of radiotherapy, I started a year long maintenance chemotherapy regime. This consists of 12 cycles of chemotherapy: there are 4 weeks in each cycle, and I get chemotherapy via my port for 3 weeks of that cycle then a week off. This chemotherapy is called Vinorelbine. Also each morning I have to take an oral chemotherapy called Cyclophosphamide, unfortunately for me because my dosage doesn't come in tablets I have to have it in liquid - it tastes vile!!!!

My maintenance chemotherapy is going extremely well, I am feeling a lot better now and my hair is growing back. The start of maintenance chemotherapy had a lot of bumps in the road. Firstly, the radiotherapy was partly targeted at the bottom of my spine which is the part of the spine that replenishes blood, due to the radiotherapy that got damaged meaning my bloods aren't able to recover very well without support. One of the things that excited me about maintenance chemo was that I would no longer need GCSF injections (Injections that increase neutrophil count) - so I thought. After my first dose of maintenance chemotherapy I became neutropenic and my platelets dropped. This mean't I had to stop oral chemotherapy, I was off of it for 3 weeks because the doctors were waiting for my counts to rise but nothing happened. So I was forced back onto GCSF injections, I have them on a Monday-Wednesday-Friday routine.
Secondly, I am supposed to be on 100% dose of Vinorelbine but due to my platelet count dropping I am currently receiving 66% Vinorelbine. We have talked about increasing the dose to 80% but my consultant does not think it is a good idea. Of course this isn't the ideal situation as I would rather be receiving my maximum dose, but I want my body to stay well so it is for the best.

Not all Rhabdomyosarcoma patients receive maintenance chemotherapy. In England, you receive maintenance chemotherapy if you have stage 4 Rhabdomyosarcoma. This is because stage 4 rhabdomyosarcoma has a high relapse-rate. The maintenance chemotherapy is less harsh doses of chemotherapy that makes sure all the cancer cells that scans can't show are gone. Even though it is annoying that the maintenance chemotherapy adds nearly an extra year to your protocol, it is very important for stage 4 rhabdomyosarcoma patients because it helps keep the cancer away.

I am currently on my 9th out of 12 cycles of maintenance chemotherapy, I can definitely say that all of this treatment has taken a battering to my body. Most days I feel achy and tired, it is gradually getting worse as the cycles go on. Back in September I was able to do 2 full days at school pretty easily and not feel too bad. However, now I feel exhausted after 2 full days at school, all I can do is lay in bed. School is becoming more demanding so it will be hard to keep up with school and my fatigue, but I am determined to do as much as I can and fight through the aches and pains.

I hope this blog post has made you understand what maintenance chemotherapy is. If you are going through it or will be soon then stay strong and stay determined!

Thank you for reading!

Love Ellie xxx