Yay! First dose of parp inhibitor taken

I took my first dose of BMN673 parp inhibitor drug yesterday. Just 6 pills and so far no side effects at all. Feeling good!

[spanishanna]

Oh Charon, lucky you.

I have just been turned down for PARP inhibitors. Main reason, although I have lived in the UK for 55 years, paid all my taxes and Insurances, receive a UK pension, but just because I now reside in Spain I am no longer eligible. I find this grossly unfair when so any others go into the UK willy nilly and get absolutely everything. The second reason is I have actually had too much chemo to be able to participate. My cancer has meant that I am into my 6th year with only about a year off chemo in all that time and in May I will have been on chemo continuously for 4 years.

If had been eligible and could could have paid for treatment we would have done all we could to find the money. But the Prof in charge fears that because my bloods are already so damaged with continual treatment the PARPs might just be a step too far. It was bad news,I was gutted as I had been told I was a suitable candidate, but hey ho, I shall carry on and hope something else comes forward..

Where are you taking part in the trials.

Good luck and I hope they come through for you.

Love Anna xx

[BusyLizzie]

Hi Charon,

I guess you have BRCA1 / BRCA2 alterations then? The very best of luck. You are on the cutting edge and of something I understand to be very successful. I hope your little 'smart bombs' find their target.

Love Lizzie

X

[Hidden]

Hi girls sorry for ignorance but what is PARP inhibitor??? Whens it used ? Love Lynn XXXX

[BusyLizzie in reply to Hidden]

Hi Lynn,

This wiki site says it better than I could:-

en.wikipedia.org/wiki/PARP_...

Bottom line is if you go to a genetics clinic they can analyze your sample block from your biopsy and a bloold sample and test to see if your ovarian cancer / breast cancer (or in the case of men prostate cancer) is due to gene alterations namely in your BRCA1 and BRCA2 genes. This is more likely if there is a history of the above 3 cancers in your family. There are millions of genes and more could be involved with ovarian cancer - but at the moment only these 2 genes have been identified. These 2 genes were OK with me, so PARP inhibitors are not suitbale for me. Some ladies also exhibit BRCAness, which is despite not having alteration to these genes, their disease acts as though it was (a lookey likey). They also could respond to PARP inhibitors, but I am not 100% sure how they know you are BRCAness. I have been told I am not because I am platinum resistant whereas Anna was also platinum resistant, but sometimes they use platinum on her because her cancer is changing and has been pronounced by her onc as a BRCAness.

PARP inhibitors could be a major breakthrough for the ladies who respond to that treatment as it targets the tumours and have thus been dubbed as 'Smart bombs'. It does not work the same as chemo which is not targeted....let's blitz fast dividing cells and hope the cancer cells are hit hard along with any healthy cells.

Love Lizzie

X

[Hidden]

Hi Lizzie,thanks for the info! I will read through it again and try and take it all in. I dont have any of those cancers in my family only oesophagal(my bro died at 52) and leukaemia( my sister at 4yrs) so it wouldnt be suitable for me i dont suppose. God i wish there was a cure dont you?

I actually got a facebook message last night from the Lymphoma group im part of and there was an article there on a tree in the rain forest called the GRAVIOLA tree. Apparently this tree has astounding powers against cancer but i dont know which ones. Its worth looking into though eh? Hell id eat horse s---- if i thought i could be cured! Thanks again for reply. Will chat soon Love and hugs Lynn XXX

[spanishanna]

Lynn, I went to a lunch a year ago and the speaker Emily Hilton who has written a book on her survival of breast cancer without conventional treatment. She had reiki, massage, meditation, went to the Amazon jungle and lived there taking various weird things, but one thing she did mention was Graviloa and swears by it. Copied and pasted off Cancer Research UK. She gave me 3 healing sessions on 3 consecutive days and I can honestly say it was amazing, I have never felt so relaxed. Hubby was annoyed he couldn't get me to lose my temper lol.

Graviola is a substance that comes from a tree in the rain forests of Africa, South America, and Southeast Asia. Its scientific name is Annona muricata. It is also known as cherimoya, guanabana, soursop, custard apple, and brazilian paw paw. In many countries, people use the bark, leaves, root, and fruits of this tree for traditional remedies. The active ingredient is thought to be a type of plant compound (phytochemical) called annonaceous acetogenins.

People in African and South American countries have used graviola to treat infections with viruses or parasites, rheumatism, arthritis, depression, and sickness. We know from research that some graviola extracts can help to treat these conditions.

In laboratory studies, graviola extracts can kill some types of liver and breast cancer cells that are resistant to particular chemotherapy drugs. But there haven’t been any large scale studies in humans. So we don't know yet whether it can work as a cancer treatment or not. Overall, there is no evidence to show that graviola works as a cure for cancer. Many sites on the internet advertise and promote graviola capsules as a cancer cure, but none of them are supported by any reputable scientific cancer organisations.

We know very little about how graviola affects the body. But we do know it can cause nerve changes, causing symptoms similar to Parkinson's disease. So it may have harmful side effects for some people. Always talk to your doctor before taking any kind of complementary or alternative therapy.

Graviola costs more than £5 for 100 capsules. The manufacturers advise taking 2 capsules, 3 to 4 times a day. So 100 capsules could last less than 2 weeks.

We do not support the use of graviola to treat cancer. Our advice is to be very cautious about believing information or paying for any type of alternative cancer therapy on the internet. You may find it useful to read our section about searching for information on the internet.

Love Anna xx

[Hidden]

Hi Anna, Lizzie and Lynn,

Thank you for your replies and your detailed explanations.

So sorry to read Anna that you have been turned down for a parp inhibitor trial. Was that for a particular named trial or UK trials in general?

The parp inhibitor treatment that I hope to start will be a drug taken daily in tablet form. As explained by Cancer Research UK "PARP inhibitors work by preventing cancer cells from repairing certain types of damage to their DNA. Most healthy cells have other ways of repairing DNA damage so they aren’t affected by the drugs, but cancer cells with faulty BRCA1 or BRCA2 can’t carry out these repairs. The combined effect of knocking out both DNA repair mechanisms is so severe that the cancer cells die." I do hope this proves to be the case for me. The results so far have been very encouraging although I cannot get too excited as I met two ladies last week for whom this drug hasn't been successful.

I will be taking in the Biomarin BMN673 trial at the Royal Marsden Hospital under Professor Stan Kaye: clinicaltrials.gov/ct2/show.... I am BRCA 1 positive.

Cancer Research UK are recruiting for a parp inhibitor trial at the moment:

cancerhelp.cancerresearchuk...

Although it says for BRCA1 and BRCA2 in the title, women who have serous ovarian cancer that is high grade can take part in the trial even if they do not have a BRCA gene fault.

Best wishes to you all.

Sharon

xx

[BusyLizzie in reply to Hidden]

Hi Sharon,

Thanks for this latest info re: "Although it says for BRCA1 and BRCA2 in the title, women who have serous ovarian cancer that is high grade can take part in the trial even if they do not have a BRCA gene fault." At the moment I am having some response from my current chemo, but it is always good to know the options!

Many, many best wishes with this trial and as I said before, let's hope the little smart bombs hit their targets and knock them to smitherines.

Love Lizzie

X

[Hidden in reply to BusyLizzie]

Thank you Lizzie and I hope your chemo is successful too.

[DebiMcK]

Hey,

good news.

I have been on the BMN 673 trial since August 2011. I am on a very low dose anyway but have not had any side effects to date.

My CA125 dropped significantly over the course of about 8 weeks, with the regular scans showing signs of tumour shrinkage too.

My tumour markers have just started to go up again recently, but this trial has allowed me to be chemo free for over a year and a half now. I hope it works for you too.

[Hidden in reply to DebiMcK]

Hi DebiMck

Thank you for replying to my post. Good to hear from someone actually on the same trial and to hear that you had no side effects is great news.

What dose are you on? Are they going to increase your dose as your markers have gone up now?

Best wishes to you

Sharon

[Hidden in reply to DebiMcK]

Can I also ask are you BRCA 1 positive?

[DebiMcK in reply to Hidden]

Hi Charon,

I am BRCA 1 positive. I am on 200mcg per day and the talk is to put me up to 600mcg. I had a scan on Tuesday and should be seeing Prof Kaye on 28th March, and I guess what happens next depends on the scan pictures. They are great people at the Marsden things move quickly, (I found out my tumour markers were up on 15th March and was scanned on 20th) and they act on their decisions. My previous onc, kind of dithered a bit. I feel confident of the team at Marsden which is good for my head when I'm dealing with another recurrence. I travel down from Nottingham though so it isn't all easy approx 8 hour round trip.

[Hidden in reply to DebiMcK]

Hi Debi

Thanks for your reply. So glad to hear that they are responding quickly and are going to increase your dose. I am on 900mcg and so far have had no side effects (only had 3 doses so far though). Yes they are excellent at the Marsden. Good luck with your appointment on the 28th.

You are coming a long way! I am travelling from Colchester (about 100 miles each way) so not so far as you.

Best wishes

Sharon

[spanishanna]

Ladies, it it so good to hear positive response from these trials. Unfortunately I looked at the trials at The RM and I have indeed had too much chemotherapy, can't win really can I as the chemo has kept me alive !!

However I am still going to speak to my Onc tomorrow as he has a working relationship with Prof Stan Kaye.

Love Anna xx