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Clinical Trials, My New Journey

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User

Posted 15 Sep 2018 at 12:56

I can add some thoughts on Gemcitabine because I have used it twice. Both times it was in combination with Cisplatin (the active component of which, so far as PCa is concerned, is said to be Platinum). In my case I had four cycles six years ago for bladder cancer and I am in my sixth and final cycle for a rather nasty and unexpected BC met in my liver and in the tissue which attaches the.bowel to the spine. Now, I noticed six years ago that the Gemcis (as the combination was then called) halved my PSA reading which was very low (less than one). Later research confirmed that the Platinum element is effective in some cases in dealing with PCa, as my oncologist recently confirmed. So far so good, in my case. In addition to a marked radiological response after my third cycle on the liver met, my PSA has downshifted well. From 6.4 pre-chemo, it reached 0.9 last week, after five cycles. Was it just the Platinum element doing this? I don't think so. I'm not even sure that it was the Platinum.

II believe my only PCa met (or maybe remains of the mother ship) is in my urethra. It oozes a discharge out of my penis as the chemo works. Now, it has been my practice to encourage the discharge out of the pipe every morning, as it can be a bit corrosive on the foreskin and to minimise the slight soiling of my pants. I have noticed that after the eighth day of the cycle, when I have a second shot of the Gemcitabine (the first is given after the more toxic Cisplatin on day one of the cycle), the discharge is greater.

My conclusion: Gemcitabine is effective against PCa, at least in my case. As it is so much easier to handle in terms of side effects, I wonder why it has not been tried before, but I am very glad to see it used in this trial. I would be hopeful of it bringing results, as I am sure it is for me. In fact, I am tempted to ask my oncologist to give me continued treatment (off label, I suppose) with Gemcitabine alone to see if I can get the PSA below 0.1, eventually....

User

Posted 22 Sep 2018 at 20:51

Hi AC,

I think you are absolutely correct. See the link from the drug companies web site.

https://www.sierraoncology.com/development/sra737/targeting-chk1/

The graphics are great and gives you a clear understanding of the science behind it all.

So, bloods and screening on Tuesday, single dose of SRA737 following Monday, then it all kicks off with Gemcitabine a week after that with SRA737 the following two days.

Best regards

User

Posted 03 Oct 2018 at 18:20

That's "T - 7" completed. Had a single dose of SRA737 on Monday. Left home at 07.00am and got home 10.30pm. Was not the walk in the park I had hoped for. You cannot have any food 2 hours before and 1 hour after. The dose itself was five capsules amounting to 500mg. The dosage is still being finalised so may change.

After taking them, after about an hour I was feeling a little "queezy". I was provided with some toast and coffee. Immediately after finishing the toast I threw up quite badly. Luckily I was in a side room and made it to the sink (just)! Apparently it was expected and next time I get it I will have anti-sickness tablets to prevent the nausea. Once I had been sick, I felt OK. Whether it was the drug, or nerves or a combination of both I don't know.

Bloods taken before, then hourly, 2 hourly 4 hourly etc. as well as blood pressure and temperature. I was very well looked after.

Follow up visit 24 and 48 hours for more blood.

Cycle 1 day1 starts on Monday, with chemo (Gemcitabine) with SRA737 on the following two days.

So my update next week will be interesting!

Best regards

User

Posted 11 Oct 2018 at 19:31

This week started the trial proper.

As chemo was on Monday, blood had to be taken and tested before getting the Gemcitabine. The starting PSA figure is not very good, 465

Cycle 1 day 1 is the chemo, apparently about 50% of normal dose, infusion 30 minutes. Needed to stay for bloods 6 hours after having the chemo

Cycle 1 day 2 was the first dose of SRA737. Unlike previous week, had anti-sickness tablets so (fortunately) kept it down. 5 x 100mg capsules. Needed to stay for 4 hours for bloods.

Cycle 1 day 3 same as previous day

I am very impressed at the attention to detail the trials team go into. Nothing is overlooked. I feel in very safe hands. The amount of blood taken though would make Bram Stoker proud!

Overall impressions is that this is do-able but no walk in the park. It is funny how you easily forget how much chemo and other treatments mess with your overall health. I am now back to plodding along instead of walking spritely. It has been a few months since last finishing the Cabazitaxel that I have felt so exhausted.

Still, 4 days off until next chemo which will be Cycle 1 day 8. Happy days!

Best regards

User

Posted 11 Oct 2018 at 20:07

Stay strong Orm, we re all wishing you well.

Keep the Faith

User

Posted 18 Oct 2018 at 18:48

2nd week of cycle 1.

Monday. Chemo was almost delayed as my white blood cell count was a fraction over 1. However I did receive the infusion. It is seven days after last chemo so was expecting something like this. It is normal for an "isolation " period. I was told that the dose of the chemo was greater than given to the few previous recipients as the exact amount of chemo is still being analysed.

Tuesday Got to take the SRA737 at home which was great. Felt very nauseous though

Wednesday. Long day at the hospital (7.00am to 10.00pm) Took the drug and had blood taken at the usual intervals throughout the day. Good new was my white blood cell count had risen to 2.5!

So that is it until chemo on Monday

Best regards

User

Posted 25 Oct 2018 at 18:02

Week 3 Cycle 1

Touch and go on Monday. My white blood cells were down to 0.7. As a result my chemo was reduced by 25%. Told to take care to prevent any infections and avoid people with coughs and colds.

Tuesdays SRA737 saw me vomiting about 2 hours after taking it. Advised to have some breakfast first then nothing for 2 hours after that before taking the drug.

Wednesday I followed the advise and it seemed to work.

Still feel a bit queasy though.

Blood test today (Thursday) saw my white blood cell count up to 2.4. Great!

There is now no more treatment for about 10 days before Day 1 Cycle 2 Looking forward to the forthcoming break from treatment!

Best regards

User

Posted 05 Nov 2018 at 18:54

Cycle 2 week 1

Started second cycle today starting with chemo, Gemcitabine. The blood tests taken and compared to the start of the last cycle shows we may be on to something here guys. My PSA was 654 and doubling every three weeks. Today it is 415, so about a 250 point drop! I think it was Auld Codger who has had this chemo before and his PSA dropped. Strange it is not used routinely for PC as it is a well tolerated chemo.

Now we need to see if the SRA737 which I take on the two days after chemo does what is intended to happen, that is to block the signals so my DNA does not "over repair" the cells which has been killed by the chemo. Every treatment I have had shows my body responding positively only for the cancer to come back even more aggressively, so fingers crossed!

Best regards

User

Posted 05 Nov 2018 at 22:47

Hope all goes well Orm123,

Ian

Ido4

User

Posted 06 Nov 2018 at 07:18

good luck x

User

Posted 06 Nov 2018 at 12:42

Good luck. Keep us posted as to progress. 👍

User

Posted 06 Nov 2018 at 12:43

Good luck. Keep us posted as to progress. 👍

User

Posted 06 Nov 2018 at 15:49

Orm123, Excellent response! The big question is, will it last? I have a blood test followed by a scan in a month which will throw some light on that in my case. It will be very interesting to learn what the SRA737 brings to the party. I hope this trial continues to go well for you.

User

Posted 04 Dec 2018 at 16:15

Cycle 3 day 1 started yesterday

Just to clarify 1xcycle is 3 weekly doses of gemcitabine followed by SRA737 on the following 2 days for three weeks followed by 7 "treatment free" days so a cycle is 28 days.

Firstly, just realised I have now passed my 7th anniversary of being diagnosed at stage 4. I feel very lucky I am beating the odds of survival!

Last week I had a CT scan which was at 56 days after starting the trial. This was to be compared against my base scan taken at the start. Was a bit nervous what the result was going to be.

Great news! everything is absolutely stable. No progression of the disease whatsoever. My PSA is exactly the same as last month, 415 (wish it was lower though). Further more, the scans have revealed that my bones are re-calcifying (healing) themselves!

I have to say it is quite a tiring treatment, but now the nausea is under control, everything is good.

It looks like the SRA737 is doing what it is supposed to do, stopping the signals to my body to generate more cancer cells. It looks like the drug is in effect "stopping the clock" on the cancer.

Obviously time will tell, but it is all looking good. During the last cycle, I had to sign a new consent form as there is now about 90 people worldwide now in the trial and the side effects are becoming more known. In fact the list of side effects has increased from 4 to about 20!. This drug is being trialed with people over 5 different cancers so could be an important break through if continues to be sucessful.

My next treatment free week is Christmas week, so all good! It means having chemo on New Years eve but not really bothered about that!

Best regards

User

Posted 31 Dec 2018 at 19:03

Cycle (month) 4, Day 1

Trial seems to be going well. I actualy feel quite good! Anti-sickness regime working well. Everything seems stable, PSA marginally up but well within the 10% margin of error. No pain.

Next CT scan on 22nd January and I will get the results following week.

Fingers crossed for a completely boring 2019!

Happy New Year!

Best regards

User

Posted 01 Jan 2019 at 02:05

Good update - happy new year to you also.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 01 Jan 2019 at 12:32

I’m currently on a 3 month treatment holiday following 6 x Radium 223 infusions. Glad to see that your coping with whatever the trial throws at you, as “trials” could be my next option. Wishing you all the best for the New Year.

Keep the Faith

User

Posted 01 Jan 2019 at 15:38

Happy New Year Orm

Thank you for giving us this insight into your trial experience.

Really interesting to follow

Clare

User

Posted 29 Jan 2019 at 11:49

Cycle (month) 5 day 1

Great news. CT scan last week shows everything is completely stable. Also PSA has dropped by about 50 points. Just over 400. Still high but given the fact I feel really good, and this treatment has improved my quality of life enormously I cannot complain.

Although I lose 3 Mondays out of 4 due to getting chemo on these days, I have adjusted quite well and the routine has just become normal.

All of the treatments I have had, Docetaxel, Enzalutimide, and Cabazitaxel all started showing signs at this point (about 4- 5 months in) that they had stopped working so starting to get cautiously optimistic that we might be on to something here!

Best regards

User

Posted 25 Feb 2019 at 18:44

Cycle (month)6 day 1

So, the start of half a year on the trial. I have to say that I feel really well. No pain and life is different but good. It is different because everything I want to do has to be coordinated within the trial cycle routines. No hardship at all.

PSA number had not come through before I left the hospital today so will know next Monday.

Best regards

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