I'm on the PARP inhibitors!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

• By JanP
• Posted February 24, 2009 at 6:08 am
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What good news Sue. I do hope the Parp will work for you.I was about to write to you on CBN as I have been wondering about your progress. I was thinking you were too ill to post. Did you pick up my PM on CBN?

I was due to start on the same trial as you yesterday, Monday 23rd feb. All the pre-tests completed, just waiting for the genetic results to come through from USA. Then on friday a phone call told me I was not BRACA after all. I was so disappointed. Apparently I probably have some other familial gene which has not yet been identified!!

The doc rang me yesterday to say they will be discussing my next step soon and will phone again next week. So back to waiting and re-trawling the Net and trying to remain positive.

I had been intending to write and tell you Sue that another consultant had been really up beat about this trial. Said it was brilliant because even when the cancer returned at some time in the future, if you had been on the doxil arm you would then be eligible for the ADZ drug which you cannot get in any other way.

So I reckon you have made a wise choice and wish you well with the new drug. I am sure this is the way to go. We need to have the type of ovaca identified and not continue to hit it with a wide angled chemo. This BRACA trial is leading the way.

BTW, I read somewhere that if you have any male relatives with breast cancer then that is almost certainly due to the braca gene.
keep posting with your progress Sue.

JanP

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• By JanP
• Posted February 24, 2009 at 6:17 am
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Forgot to say that although I feel fine, My CA is 805 and rising rapidly and the tumour in the peri aortic lymph nodes has increased in a month by 80%. Docs want me to start something, probably doxil ,very soon.

I gave up the Femara as it obviously was not working and I feel much better without it. I now realise I was very bloated while taking it with puffy ankles and a bigger girth round my middle. I hesitate to call it my waist !! My trousers are now too big.
JanP

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• By Terrafly
• Posted February 24, 2009 at 6:49 am
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Sue :D

Im soooo pleased for you :DD......Thats great, I am dissapointed for JanP as well but just like you Jan, Im still trawling the net in case i dont respond to the PARP.

Sue the treatment itself is a breeeeze :D.......no side effects, and im due for my 2nd 5 day course next week. I do have my first scan since the start of treatment on the 16th march though so am really hanging on that, I should get a little idea from my next blood test, blow me, i've been waiting since last october to see an effect on my cancer (3 aortic lymph nodes the biggest being 1.9cm at the pre-treatment scan) but am on the home straight :D and still keeping it all crossed.

Keep us all posted of course......do you take it orally everyday ? are they giving it at like a maintenance dose ?

Really pleased to hear you get to be a PARP pioneer :DDD

Anita

xXx

So how long will it be until you might

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• By Terrafly
• Posted February 24, 2009 at 6:50 am
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ps Misha where are you, hope you are ok :)

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• By Terrafly
• Posted February 24, 2009 at 6:52 am
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i'll finish that sentence shall i sue LOL.......how long might it be until you get an idea how its working ? did they say ?

xXx

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• By sueoz
• Posted February 24, 2009 at 7:55 am
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Hello girls,
It was so good to hear from both of you.

JanP I was really saddened to hear you cant get the PARP inhibitors because of your results from the genetic testing. I wish this drug could be available for everyone and I hope and pray that will be soon. More importantly, I pray that you respond really well to the Doxil and that it treats you good. As you know, I tolerated the Doxil ok except for some mouth sores after the second infusion and the hand/foot issues, which may have affected me more than most people I've read about on here. LindaW is awesome on here, I call her the Doxil Queen because she's been on it for something like 9 or 10 years.

Anita, I really admire how proactive you are, trawling the net for info if it doesn't work out. Most of my tumors are also in the lower groin/pelvis and involve a number of para-aortic lymph nodes as well. I forgot to mention that I was able to switch over from the Doxil to the PARP drugs because my onc re-read my CT scans and got the opinions of other radiologists to verify that they had in fact grown by 20% to qualify for the switching over. Funny how different radiologists see different things...however one of the nodes had risen from 12mm to about 20mm or so.

I take 8 capsules in the morning and 8 capsules in the night... and they must be taken 12 hours apart, so I chose to take them at 9am and 9pm (0900/2100). There are strict rules about not being able to eat 1 hour before taking the capsules and 2 hours after taking them. (I actually have only taken my first dose tonight, having received them earlier today.)

As for tracking response to the drug, I have to have weekly blood tests (including CA125) for the first 8 weeks and then a CT scan.

The only side effects my onc said other women on the oral PARPs had were slight nausea and fatigue. I was told that as long as you respond to the drugs, you stay on them so I guess that's like maintenance isnt it.

Finally, I've also been thinking of you Mish. I hope you are well, I sent you a PM and email a couple of weeks of ago. Hope everything is fine.

I am constantly inspired and always get excited to hear from you all on this web site. You're always in my thoughts and prayers.

Love,
Sue

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• By FavoriteAunt
• Posted February 24, 2009 at 11:44 am
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Hi Sue,
Thank you for all the very interesting information. I had not heard of PARP before your posts. I'm now on Doxil and will get my 5th treatment next week. I'm tolerating it well and the one blood test I had showed my numbers went down after 2 treatments. But it's good to know about all these other things because I have no idea what the future will bring.

Good luck with everything. I hope you get great results. And thanks again for sharing everything with us. All the best,
Jo

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• By Mish_E
• Posted February 24, 2009 at 10:11 pm
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Hi,

That is great news Sue about getting on the parpy's. Sorry it has taken me so long to respond to your emails (Sue and Terrafly). With work and hubby and a demanding puppy it is sometimes hard to get on line.

I am going really well and have had my results of my first scan. I had a marked reduction in all the tumours they measured (one reduced by 1cm and the other two by 0.5cm). They tell you that the first scan will most likely come back worse because the drug takes a while to work, so to have such a positive result I was thrilled and really surprised.

Terrafly I checked to see what sort of mutation I have the heterozygous mutation, which I think is the same as you. I am not sure what this means in respect to how the parpy works...??

Sue, the only side effects I have had from the parpy is more intense hot flushes, reflux and a bit of nausea. Pretty tame when you put it against chemo.

Anyway, great news Sue.

Mish

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• By KellyRilla
• Posted February 25, 2009 at 8:25 am
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What providence that you all should post notes on parps as I was going to go searching for the last posts and now I don't have to.
I just found out yesterday evening in a phone call from a very nice lady from the National Institue of Health that the parp trial I was to enter is on indefinite administrative hold. They don't know when it will reopen. Drats!!! I was so excited about entering that! She said the reason for the hold was that 2 ladies in the the first phase of the trial had some bad responses. The first phase was to determine the toxicity levels.
You all are lucky in that you don't have the beaurocracy of the FDA to step in and make you jump thru hoops. Sounds like Australia and the UK are way out ahead of the US.
Just goes to show how well the government can run health care. Yikes!
I'm so depressed. Now, I guess I'll go back on carbo since it was working but then should the trial open I won't be allowed to enter as one condition was that you had to be off of carbo for 6 months to enter the trial. It was a parp with carbo trial. Not doxil like yours.
It was Parp AZD 2281 I believe. What is yours?
I was doing a search to find any other parp trials for ov but came up empty. I found one for lymphoma.
I'm so happy Sue that you're on the parps now, and also to hear from the others that the side effects are not bad. I was really hoping that this might be the answer that we're looking for. I have lost way too many friends in a short amount of time.
God bless you all,
Kelly

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• By Terrafly
• Posted February 25, 2009 at 3:50 pm
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Hi Kelly

Really sorry to hear you cant participate, I can't believe theres not an active trial where you are ! I'm very dissapointed for you, but don't despair, even if you have to do chemo again; if all the other parp trials are successful something must come out of it again to give you another opportunity, but it might take another 6 months or longer anyways, so theres always hope you may be able to in the future. I will keep on the lookout for you as well. P.s. My parp is called AG014699 (iv)

Mish :) Sorry for the misspelling of your name, but its great to hear from you ! GGRREeeaat News :DDD,,,,,I can't tell you how pleased i am to hear how well you are doing so far ! :D........Im still sitting on the edge but hope hope hope I respond as well as you have. I think I've mentioned before that my Prof told me that some people are not responding to the PARP so im just praying that i am not one ;), but even if i do have to go back on the chemo it just warms my heart to know that PARP can work for some people. I feel like its working because my colour (face) seems better in the evening than it did before I started treatment, but know that could be just psychological........anyways Im really happy its working for you !!

Yes im heterozygous too and if I don't respond like you, then maybe being heterozygous has no bearing on how the parp works :) I dont know that different mutations have any bearing on the treatment, but just thought that sharing stories might give some or any kinda link on how it works for different people. Anyway Im rambling so lastly .... Keep it up :D Go You x

Hi again to you Sue and FavoriteAunt :)

Warm thoughts and hugs to you all

Anita

x

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• By viki
• Posted February 25, 2009 at 4:27 pm
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Hello, I just got on the same trial as Sueoz. Today is my first PARP-I day, yesterday I got the high dose AZD2281 in the trial lottery. Perhaps we the PARP inhibitor "users" should compare notes periodically? I found that PARP-I seems to be "hot" at OVCA-related medical meetings but no other way to get it meanwhile than being accepted to some trial. I tried to ask around about PARP-I efficacy . The nice young doc in charge of the trial said that they have some 12 patients enrolled (I think everybody is platinum resistant). The doc said everybody responded initially to the treatment (the "worst" was a stabilization) - which is pretty amazing, but the trial has lasted only a few months.
Does anybody know anything more about how well does that PARP-I perform?

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• By Terrafly
• Posted February 27, 2009 at 12:35 pm
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Hi Viki :)

I've pm'd you today but just wanted to say welcome to the 'parp' club (lol sounds funny that ;D).........Good luck to us all xXx

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• By Terrafly
• Posted March 2, 2009 at 2:04 pm
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Hi all

I just had to add a post today because I'm feeling a little down.

I've started the 2nd course on the PARP today, and although I've been told its too soon to know anything, and that i must wait til after my scan on the 20th March to know how the drug is working, I had my blood test results from Friday and my marker count has increased from 1058ish (before starting PARP) to about 1400.

I can't help but feel disappointed and that maybe this isnt going to work for me, though I'm keeping an open mind until after the scan and the rest of this week's treatment.

"Sigghhh" Even though I didn't expect it to go down so soon, i was quite surprised by this increase. This is the rate it was increasing (about 300 every 3/4 weeks) When my relapse started last October.

All I can do is hope the PARP is somehow working despite the marker count, but its just going to make the next 3-4 weeks longer than ever.

Hope you are all ok ;)...will pm you again soon Viki .


thoughts as always

Anita

x

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• By sueoz
• Posted March 3, 2009 at 4:13 am
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Hi Anita,

I'm really sorry to hear your latest news, however I'm hoping and praying that the CA125 isnt a reliable marker for the PARP inhibitor drugs (despite what my onc, says that the marker is indicative of drug response).

Of course the scan results will be the most important. What would your Plan B if the PARPs arent working?

As with me, I've been on the oral PARP drugs for a week now and had my CA125 done today and will keep you posted with the results. I'm actually hoping that I have a slow response to the drug and that it stabilises me. I say this because my history has been a very quick and drastic initial response to the chemo with a quick rate of resistance to the chemo later on. In Feb 2008, my CA125 went from over 1,000 to 140 with one hit of carboplatin which only lasted til about Jun/July 2008. The same happened with the Doxil in Oct/Nov last year which I immediately responded to, making my CA125 go from 1,200+ to 500 even though the CA125 is meant to increase initially and then stabilise later on. Now it's Feb/Mar and I am no longer responding to the Doxil.

So the moral of this, I guess, is let's hope the PARPs stabilise our disease, if not shrink our tumors. And of course everybody is different and responds in her own way, there's always some drug out there for us to use and switch to backwards and forwards.

Finally, Mish, can I ask if your CA125 was an accurate indicator as to whether or not the PARP inhibitors were working for you? Or, were your scans the only way you knew you were responding to the PARPs?

I'll just end on a note about my symptoms. Even though the PARPs are not meant to really give you any side effects, the first couple of days I was feverish and had some headaches. However, these symptoms seem to be going away now, but I'm not sure if they ever really related to the PARPs or not. That's the beauty of being on clinical trials... we never really know for sure, do we?

Love all,
Sue

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• By sueoz
• Posted March 3, 2009 at 4:49 am
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I forgot to include in my post some info relating to the likelihood of responding to the PARP inhibitors.
I have read and have been told by my onc that those who respond to the PARP inhibitors are those who have been the least pre-treated with other chemo regimens. Anita are the PARP inhibitors your first chemo drugs you're using since your recurrence/ initial treatment? Did you have the golden standard treatment for your first line treatment (IV carbo/taxol)?

One of the main reasons I was really upset and disappointed about not getting the PARP inhibitors to begin with on the PARP vs Doxil trial (other than having to go through IV injections despite my failing veins) was that I was worried that, by having further chemos, I may have been lessening my chances of responding to the PARPs.

I've also read that if you are platinum resistant the PARPs may not work on you either, which is a big worry as I'm platinum resistant. Of course... this isnt always the case.

Since platinum drugs (carboplatin essentially) is the most important drug for keeping us alive, I've been long keeping track of the Phenoxodiol trial (Ovature) which has been going through trials since about 2002... and despite very positive results of resensitising otherwise resistant ovca, the drug won't be commercially available for some time I fear. The trials are currently comparing Phenoxodiol with carboplatin vs Placebo with carboplatin, the latter which is particularly cruel as phenoxodiol can let you live longer because it kills that platinum resistant cancer.

I was also told by my onc that the phenoxodiol trial excludes those who are allergic to the carboplatin (in contrast to the resistance to the cancer itself). I developed carbo allergies during my 4th infusion while undergoing single agent carboplatin last year for my recurrence. (I had just missed out at that time on going on the PARP inhibitors as single agent drugs - not combined with carboplatin.) There are trials out there now combining the PARP inhibitors with carboplatin which may be the best combo - I think Kelly was trying to get onto a trial like this.

Anyhow, I know I'm getting off track, but if you're not carboplatin allergic and resistant to it, maybe you can try going on a Phenoxodiol trial??

Sue

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• By Terrafly
• Posted March 3, 2009 at 8:50 am
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Hi Sue :)


I've read the same thing about parp being less effective on patients who have had numerous rounds of chemo. I've only had 1 course previously: first line carbo/taxol. Started in Nov 07 and finished in April 08.


Plan B........yes, well its very likely that should I not begin to respond to the PARP then the next step is to consider a carbo combo. My thinking on this is to bring the cancer right back down to where I was at the beginning of my first remission. Then think about getting on another trial when it returns again (which it will). I have been thinking that maybe I could go straight onto another non chemo trial if this one fails, but feel this is risky because if the next thing doesnt work then my cancer could spread because of all the time elapsed that it is not being successfully treated, (Most trials want you to be at least 4 weeks clear of any previous treatment). I'll take advice on this from the trial prof after confirmation of the results.

That said, Im looking now (just in case) for a trial chemo combo, the one you mention Phenoxodiol, and the other also with chemo that JanP is going on that involves caelyx (doxil i think), I really want to avoid taxol as I really don't want to lose my hair again and am not convinced of any additional benefit, (do you lose hair with doxil or phenoxodiol ?) but will speak to by onc about it.

I've posted a question on medhelp about the difference between AZD2281 and AG014699 coz i would like to know if it is the same drug with different formats or whether they are different drugs. Will let you know if i get an answer on that :)

Heres hoping the PARP works for you Sue x It would be interesting to know how your CA125 markers behave as you go through the treatment.

Anita

x

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• By KellyRilla
• Posted March 4, 2009 at 7:55 pm
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Hey, I just got word that a phase II trial of PARP inhibitor AZD2281 will open at IU Med where I get my treatments. Yeah! I was sad because the one in Maryland was put on hold. But that was 10hrs away and would require much travel time.
The only problem is it's a double blind study and I could get the placebo and not the drug and not know it. Rats! I guess I have a 50-50 chance.
I do know of a trial in Toronto that I would be assured of getting the drug but that would once again require a 10hr drive. Of course I'm not sure I qualify for any of these yet.
I also found out my ca125 has more than doubled in the last 5 wks. Going from 616 to 1417. Yikes!
I have a carbo treatment planned for the 16th as I need to heal from my final breast reconstruction surgery on the 10th before getting any more chemo.

Fun times are being had by all!
Love, Kelly

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• By Terrafly
• Posted March 5, 2009 at 5:00 pm
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Hi Kelly

Great news that you've found more trials ! ;D, so would you consider either trial despite the drawbacks ? It sounds like you're going to do chemo again first, so are you looking to do it after they get you're count down again first ? (btw Im not excited that your count has gone up, it doesn't sound very different from the way my CA125 is behaving, and I know that totally sucks)...Sorry for firing all these questions at you, I'm just a tad excited for you lol.

I wish you a speedy recovery from your surgery, how are you doing with it ? I know this is soo wrong, but i'm even a little jealous as I have always been small in the bust stakes, so have thought about reconstruction for vanity reasons in the past, the good news is i think I'm over it now ;), little and slightly south pointing is fine for me lol.

Warm thoughts and stuff

Anita

x

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• By KellyRilla
• Posted March 6, 2009 at 12:58 pm
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Anita, you are too funny. When told surgery with reconstruction was a good option for me I considered it seriously. Then saw the "In the Family" documentary and felt I needed to speed it up.
Since I've worked with a great plastic surgeon for years and always dreamed of a nice perky set for myself, I didn't hesitate. Wow, now I get a boob job completely paid for by insurance. I've always been too small on top compared to my hips. Nothing small about them.
Of course it was much more painful than your typical boob job and that just makes me all the more proud of the fact that I've "earned" these. It will be fun to never have to wear a bra again. Especially one with wires! And I'll finally fit into a bathing suit that won't be baggy on the top.
That was the way the surgeon and his staff felt too. After all I've been thru they were planning on taking the best care of me. I've been blessed.
My tissue expanders come out next Tuesday and the soft, squishy silicone implants go in. yeah!
I've been blessed with a long chemo break so I'm not too sad about going back on chemo. I'm just thankful that the break has lasted this long.
I'm not sure yet about the trials. I do think the plan was to fire a couple of carbo tx at it and bring down my numbers then go on the trial. In fact there is a requirement that you show response to platinum. But I would rather be in a trial where I was certain to get the drug, not randomized.
This is why I'm considering travelling to Toronto to enter that trial. I'll speak with my doc about this next week.
Thanks for your well wishes and I send them right back to you. I'll keep a close eye on all of you PARP ladies' progress. Pray this will be the answer! Yes!

Teal hugs,
Kelly

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• By Mish_E
• Posted March 7, 2009 at 2:35 am
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Hi Sue, sorry it has again taken me so long to respond but better late than never I guess !!

They did do a ca125 test on me about a month in to the trial and it had gone down but no one knows if it went down because of the trial or the dose of doxil I had a month before.

Terrafly: sorry to hear about your ca125. But they told me the drug takes a while to work and that we should not take too much notice of your ca125 ... but I know it is easy to say but hard to take.

I have been feeling a little crappola myself over the last week or so. Been experiencing fatigue and quiet a bit of pain where my ovaries used to be.. been trying to take it easy and not do too much housework!! ha ha

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