Monday, March 24, 2014

Day 1: Back in crumlin to start the 2 new drugs (Temsirolimus & Temozolomide)

Temsirolimus & Temozolomide. The new buzz words we will be using for the next few months.

What are they…

Temsirolimus -  is a type of biological therapy drug treatment called an mTOR inhibitor
Temsirolimus also stops the cancer from making blood vessels, which the cells need to be able to grow. It is called an anti angiogenesis treatment. So temsirolimus helps to stop the cancer growing or may slow the growth.

Temozolomide -  is a chemotherapy drug used to treat brain tumours. It is a type of drug known as an alkylating agent and works by stopping cancer cells from making new DNA. DNA stands for DeoxyriboNucleic Acid. It is the genetic material of a cell. If cancer cells can't make DNA, they can’t split into 2 new cells, so the cancer can't grow.

The above is the easiest explanation of what these drugs do. Over the past 2.5 years we have become very familiar with medical terminology so much that I am questioned sometimes on my background, but I feel this is the only way to know and understand what is going on and what the doctors and consultants are talking about. 

Gavin was in great form going in this morning which was great. Most of the nurses that we have become good friends with had all been told about Gavin and were gutted for us, they knew we were in today to start the fight again. 

We arrived in Crumlin at 9:30am and had a beautiful isolation room waiting for us. No TV or toilet so lucky we came prepared with the laptop and iPad. 

(Gavin wanted to see how big he is getting)

They had to test Gavin's blood levels first and then get the new chemo drugs made up. At 2:30 everything was ready. It was a very long day waiting around…watching the clock and thinking about what is going on. The nurse had to give Gavin some antihistamine first and wait 30 minutes as one of the drugs side effects is a rash.. 
One drug was able to be given orally in some apple juice and then the next was given over IV.
We watched Gavin carefully as the nurse told us if he has a reaction it will happen within first 20mins….
Gavin face went very red and he felt sick about 15mins into it but it soon calmed down so the rest of the time was ok thank God.

Gavin getting his chemo below. The purple bag contains the chemo. 

We left Crumlin at 5pm and then collected Conor and Lucy from Jaynes parent's house and back home together. They knew Gavin was back in today and were very good asking was everything ok.

So we are back in every day this week and hopefully it will not take as long.

Tonight I have a few hours to research and compile more information on Gavin's case to see can we get anymore information to help us going forward.


  1. Keeping you in our prayers super Gavin and John and Jayne and all the family. Two friends of mine became nurses after their kids became sick. They got used to lingo and saw what the staff had done for their kids. :) good luck with the trial. I saw one running at mayo as well for it when I researched it.


  3. When Gavin gets better we would love for you to come and stay with us sometime during summer. You'll have your own little cottage which you can find here:

  4. Well done John, the new drugs sound very promising. Superman Gavin will be in our prayers everynight. Geoff

  5. Best of luck to Gavin for his treatment he is is my taughts and prayers I hope he keeps responding well to treatment love to all your family x

  6. I stuck your ad from the paper on a kitchen press in work, to get people texting. I feel you are going to win - don't ever stop fighting..when you can't dig deeper, keep digging.