Trusting the experts

Today I went to Kings for a clinic appointment, blood tests and chat with my consultants. It was a day of lots of waiting – I had 80 people in the queue in front of me for blood tests! And after arriving at 11am, I didn’t get to leave the hospital till gone 4pm. However, it felt like a very worthwhile appointment as I got lots of my questions answered.

I actually ended up having a consultation with two of the senior consultants (Austin and Victoria) and two specialist nurses! I got the full results of my bone marrow biopsy. With the highlights being that I have c.6% blast cells, so still quite a low level. But all of these cells contain the defect monsomy 7, which is a high risk genetic marker.

I expressed all my concerns about the current treatment plan of azacitadine not being strong enough or worthwhile pursuing as we have done it before and it just doesn’t seem like an appropriate drug for someone my age.

They explained why they were taking that action and the overall plan. The basic plan is to get me up to 100% donor. So they believe that should be achievable through the azacitadine and donor top up cells. This is as long as the disease doesn’t progress as quickly as it did in 2015, and the hope is that this donor is strong enough to fight a bit harder. They are going to give me donor cells as soon as they are available. And then my next round of aza will be on the 16th July when I get back from my holiday (they had no issues with me having a holiday and delaying chemo one week – only potential issue with me flying as my platelets are low, but I might be able to shift the holiday to all train transport)

We have booked in a Bone marrow biopsy for the 6th August to see how things are progressing after 2 cycles of the aza. Obviously my bloods will be monitored in between to which will be an indicator.

They are also looking into using an immune blocker drug. The drug has been approved for other types of cancer but it’s still in the clinical trial stage for blood cancer. Unfortunately I don’t tick the boxes for the trial as I’ve had a transplant, but they are hoping I will be able to use it on compassionate basis. Failing all of this we will move onto stronger chemo. But their main thing is they want to exploit the donor I’ve got now as much as possible and try and push out my old donor and me!

But the most important thing for me today is that I have left the appointment feeling confident and safe. Not necessarily confident about my prognosis and that we are going to beat it, but confident in my haemotology team and that they are going to do all they can for me.

In other news….. I have contracted shingles… AGAIN…. although this time it is horrific. The rash itself doesn’t look that bad, but oh my god it is painful. Its a consistent nerve pain – so like a shooting pain around the site of the rash that travels down the left side of my body and makes me spasm. The skin all on my left side of my body, and the rash is really hyper sensitive when touched too. I’m on some strong pain killers and anti viral medication, but so far the aren’t doing very much and consequently I’m not getting much sleep. We are upping the dose tonight in the hope I can get some sleep. For those who don’t want to see my spotty booty then look away now!!

Day one done…

…..6 more to go!

Is it strange that is still doesn’t feel quite real that I’m starting chemo again. Even when the nurses were injecting it into me it didn’t feel real! I cycled to work and the hospital like normal (nurses think I’m nuts!). Granted I’m a bit tired but that’s from my besties Hen party at the weekend, nothing much to do with my illness! To be honest I wouldn’t even really know i was ill if it wasn’t for bruises and the blood test results!

Today went without any issues…… Signing the consent form first. Doctor taking me through all the various things the chemo can do to me….Reduce my bone marrow function (reducing red cells, platelets, white blood cells), cause gastro issues, blood clots, organ issues, soreness around the sight of injection, potential hair loss etc etc etc…. What fun it is to go through that! Luckily the last time I had this drug I didn’t suffer too much other than mostly fatigue, so hopefully it will be similar this time round.

Then the nurse hands out my take away drugs….. something to make me poo…. something if I can’t stop pooing….Something to help the nausea…. steroids for inflammation….. And then two nurses stab me with way to big smiles on their faces as I’m whinging that the steroids are going to make me fat!! ha ha!! (Steroids didn’t use to be part of  the regime with this drug, and to be honest I think I might ask to not have them as they weren’t necessary last time. Will see how I go and if I think they are being helpful or not)

Its always with mixed emotions I go to haem onc. I love a catch up with the lovely nurses,  and randomly a good friend I met during previous treatment, but don’t like some of the memories and associations! For the time being I’m just going to try and focus on well I’m feeling and not to dwell on the past. No point!

I did manage to have a little 2 minute chat with my consultant at Peterborough today. i asked him for his opinion on my treatment plan, and he has a similar view to me…. We have tried the aza twice before, maybe now its time for something different. But the problem is what is that??!?! He says there are drugs being trialed in America, etc. Potentially kings might be able to access some of it??? We will see. I’m keen to get the full results of my biopsy and talk to my kings consultant again soon. See what they have to say.

In the meantime, I will slog through this first round of aza, get my top up of donor cells and hopefully be working towards keeping it at bay for the time being. But I’m looking forward to a proper action plan, with a bit of grunt behind it!!