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New Trial, 3rd Time Lucky?

User
Posted 07 Aug 2019 at 20:35

I have been offered the chance to participate in a new phase 1 trial. It is for a total of 16 people over 10 different centres worldwide.

The drug, which is licenced in the USA (but not the UK)for breast and ovarian cancer is called Rucaparib.

It is a PARP inhibitor. PARP is a protein inside cells that helps repair damage to DNA. DNA is the genetic material that carries the instructions for your bodies growth and development, and allows cells to continue on living. Cancer can result when there are faults known as mutations in a persons DNA that can cause cancer cells to grow out of control. PARP inhibitors stop the PARP protein from working and that can sometimes cause some cancer cells to stop growing.

It is taken in tablet form daily and a cycle is 28 days. Unlike the previous two trials, where the drug is given and monitored over a single long day before starting the trial, the evaluation period for this is 28 days. You spend the first 3 nights as an inpatient in a ward, being constantly monitored.

Before starting, the usual CT and bone scans, together with ECG and Echo scans are performed to act as a baseline. 

However, I am seeing the radiotherapy department tomorrow to plan in getting a single blast to my 6th rib where the spread is causing me a dull ache. The trial will start 14 days after this, so I am guessing commencement will be about a month.

Once again, I will let you know what is happening, good or bad.

Slightly off topic:-

My television decided to die on me.(I suspect it killed itself because of the never ending doom and gloom it has been pumping out) Went shopping for a new one and a cheerful young chap told me "no need to worry with this model as it comes with a free 5 year guarantee" I found myself thinking I wish I could get a guarantee on me. Never thought I would be jealous of a television set! Ha Ha!

Best regards

User
Posted 07 Aug 2019 at 20:35

I have been offered the chance to participate in a new phase 1 trial. It is for a total of 16 people over 10 different centres worldwide.

The drug, which is licenced in the USA (but not the UK)for breast and ovarian cancer is called Rucaparib.

It is a PARP inhibitor. PARP is a protein inside cells that helps repair damage to DNA. DNA is the genetic material that carries the instructions for your bodies growth and development, and allows cells to continue on living. Cancer can result when there are faults known as mutations in a persons DNA that can cause cancer cells to grow out of control. PARP inhibitors stop the PARP protein from working and that can sometimes cause some cancer cells to stop growing.

It is taken in tablet form daily and a cycle is 28 days. Unlike the previous two trials, where the drug is given and monitored over a single long day before starting the trial, the evaluation period for this is 28 days. You spend the first 3 nights as an inpatient in a ward, being constantly monitored.

Before starting, the usual CT and bone scans, together with ECG and Echo scans are performed to act as a baseline. 

However, I am seeing the radiotherapy department tomorrow to plan in getting a single blast to my 6th rib where the spread is causing me a dull ache. The trial will start 14 days after this, so I am guessing commencement will be about a month.

Once again, I will let you know what is happening, good or bad.

Slightly off topic:-

My television decided to die on me.(I suspect it killed itself because of the never ending doom and gloom it has been pumping out) Went shopping for a new one and a cheerful young chap told me "no need to worry with this model as it comes with a free 5 year guarantee" I found myself thinking I wish I could get a guarantee on me. Never thought I would be jealous of a television set! Ha Ha!

Best regards

User
Posted 05 Sep 2019 at 22:44

Well, I said I would report on progress good or bad, so here goes.

Had radiotherapy on ribs last week and much better now, I can now lie pain free on my right side so all good there. Turns out, I had actually cracked a rib at the diseased point. I actually know how I did it. It was by sneezing!

Had pre trial blood works taken 2 weeks ago. Last Friday had an extensive medical which was so intense, it was something you would expect a NASA astronaught to have! Even got breathalised!

Had base scans performed on Tuesday. However they said they needed to rerun a specific blood work as one of my levels was (only just) above the required parameter.

Unfortunately my liver function (ALP) had risen in the last 2 weeks from 35 to 42. The maximum allowed for this trial is 40. So trial is off.

Saw my oncologist today who went through everything in detail. Looks like the cancer is now going for the liver. However, more concerning, three areas up my spine have intensified and the CT scan showed clearly that I am in big danger of spinal cord compression. My back does ache a bit but had no idea it was serious. Just thought I was a bit stiff.

Looks like I will be having an emergency MRI scan followed by radiotherapy on the three areas probably during next week. It will be single dose zaps which was effective last week on my rib and 2 years ago on my hip.

After this I will wait to get on another trial. If there is none available in Newcastle, then will go down to the Royal Marsden, if that is quicker.

Although disappointing, the silver lining is that a big problem has been highlighted by having the CT scan which I was only having to be on the trial, (last one was in June). I feel quite blessed. Still walking 8-10 miles a day, though a bit slower of late.

On a previous post I said that I had blood taken for analysis in America for mutations to genes and compared against my biopsy sample taken eight years ago.

It seems that although told stage 4 at that point, the cancer has continued to mutate and there are clearly two genes which have mutated and are probably driving the cancer. This is very important. 12 months ago, my original biopsy was sequensed and these mutations were not identified.

As targeted therapy are the way forward, had the mutant genes been identified a year ago, different treatment options may have been available. However, the new blood test was not even available. Things are moving very quickly! So if you are offered to get your biopsy sample sequensed, and it was done many years ago, like mine, see if you can get this blood test.

I will report back with any progress with regards to a new trial

Best regards

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User
Posted 08 Aug 2019 at 19:29

Hi, this trial sounds interesting, sounds a bit similar to the  trial my OH is on, the olaparib  trial. Good luck with it.

Sheila

User
Posted 09 Aug 2019 at 14:39

I believe "PARP" inhibitors has been identified as one of the most promising areas of research. There are several different drug companies trialing their versions of it.

I was told that Rucaparib was developed at Newcastle University over 10 years ago and is only now being trialed in the UK after a decade of evidence backed research. To date, 1000 people have had this drug mainly in the USA, but it has been restricted for people with a very specific BRCA 1 mutant gene suffering from Breast or ovarian cancer. The thinking now is that some mutant genes react in almost the same way as those with BRCA1 so opens up a much wider pool of candidates.

Also, it is not cancer specific so offers tremendous opportunities for many people with late stage cancer, not just prostate.

Best regards

User
Posted 05 Sep 2019 at 22:44

Well, I said I would report on progress good or bad, so here goes.

Had radiotherapy on ribs last week and much better now, I can now lie pain free on my right side so all good there. Turns out, I had actually cracked a rib at the diseased point. I actually know how I did it. It was by sneezing!

Had pre trial blood works taken 2 weeks ago. Last Friday had an extensive medical which was so intense, it was something you would expect a NASA astronaught to have! Even got breathalised!

Had base scans performed on Tuesday. However they said they needed to rerun a specific blood work as one of my levels was (only just) above the required parameter.

Unfortunately my liver function (ALP) had risen in the last 2 weeks from 35 to 42. The maximum allowed for this trial is 40. So trial is off.

Saw my oncologist today who went through everything in detail. Looks like the cancer is now going for the liver. However, more concerning, three areas up my spine have intensified and the CT scan showed clearly that I am in big danger of spinal cord compression. My back does ache a bit but had no idea it was serious. Just thought I was a bit stiff.

Looks like I will be having an emergency MRI scan followed by radiotherapy on the three areas probably during next week. It will be single dose zaps which was effective last week on my rib and 2 years ago on my hip.

After this I will wait to get on another trial. If there is none available in Newcastle, then will go down to the Royal Marsden, if that is quicker.

Although disappointing, the silver lining is that a big problem has been highlighted by having the CT scan which I was only having to be on the trial, (last one was in June). I feel quite blessed. Still walking 8-10 miles a day, though a bit slower of late.

On a previous post I said that I had blood taken for analysis in America for mutations to genes and compared against my biopsy sample taken eight years ago.

It seems that although told stage 4 at that point, the cancer has continued to mutate and there are clearly two genes which have mutated and are probably driving the cancer. This is very important. 12 months ago, my original biopsy was sequensed and these mutations were not identified.

As targeted therapy are the way forward, had the mutant genes been identified a year ago, different treatment options may have been available. However, the new blood test was not even available. Things are moving very quickly! So if you are offered to get your biopsy sample sequensed, and it was done many years ago, like mine, see if you can get this blood test.

I will report back with any progress with regards to a new trial

Best regards

 
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