Hello again my beautiful girls.
I thought I'd just post another thread relating to PARP inhibitors because today I was finally told that I could start on them.
I was on a clinical trial comparing Doxil and oral PARP inhibitors, but the Doxil has stopped working and now I've switched over to the PARP inhibitors arm.
For others who didnt see it, background info can be found on this thread: http://www.inspire.com/groups/alliance-ovarian-cancer/discussion/parp-vs-do xil-clinical-trial/
Anita (Terrafly) how are you going on the IV PARPs?
Anybody else getting PARP inhibitors either orally or IV right now? I'm trying to network with as many people on this drug so we can compare notes as it's such a new drug.
Just to let you girls know, my oncologist said that the CA125 marker is used to measure responses to the PARP inhibitors... which was something new I learnt... I thought that the CA125 wouldnt be very reliable like with the Doxil, but of course the scans will always be the most important tools to see how things are going. My CA125 has been rising since the end of December last year and it's over 1,380 and counting so hopefully it will go down but I'm more interested in the groin/lower pelvic tumors stabilising, shrinking or even disappearing!!
Catch up with you soon,
Sue
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I'm on the PARP inhibitors!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
- By sueoz
- Posted February 24, 2009 at 12:40 am · 50 replies
- In Clinical trials
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50 replies
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- By dollycat6
- Posted June 16, 2009 at 11:06 pm
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While I'm not on chemo now (taking a break maybe a permanent one) I have followed all your PARP stories and feel a little jealous that I am not on any trial and never have been. I admire you all so much for the hanging in there despite all the glitches you've gone through. 8 pills with a full glass of water the whole deal you guys are real troopers and making headway for
those of us who can't get in for whatever reason. Kelly you are marvelous keep going girl. Someone has to kick butt. Remembering and thinking of you all.
dollycat6
- By KellyRilla
- Posted June 16, 2009 at 7:54 am
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Hey how did that picture get on there. Hee, hee. Love you Patsy!
Last I heard there was a Aztra Zeneca Parp trial in Bethesda at the NIH but only recruiting 4 people. There should be more opening in the future based on their results. Try doing a search at cliniclatrials.gov.
Good luck and God bless!
- By JanLP
- Posted June 15, 2009 at 3:55 am
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Having difficulty with my PARP study as far as when my turn will be. While I am still waiting my counts 2 weeks ago were over 6600 so I would love to get into the study soon but I keep waiting and waiting even though I am Patient #2. Does anyone know of a PARP study available or rather one that is still recruiting in the US or Canada. Thanks ladies and good luck.
Jan
- By hinsopa
- Posted June 13, 2009 at 10:40 am
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Thought some of you might enjoy this picture of Kelly and Patsy.
- By Talismom
- Posted May 21, 2009 at 10:44 am
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I just spent 3 days at MD Anderson and had a great experience. They clearly are up on all the research and PARP trial was one they suggested I look into. I live in Seattle and the nearest open one is in Vancouver. How hard is it to get into a study in another country? Also, if you are interested in doing it, how do you go about trying to get in? Any advice and experience would be appreciated. Thanks again. This site is the best thing I have found to support me through this experience.
- By hinsopa
- Posted April 30, 2009 at 11:06 pm
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Time for an update on you parp folks. I am still looking for a trial. Are any of you in the USA in a phase I or II parp trial?
- By Terrafly
- Posted April 3, 2009 at 8:39 am
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Hi all
Glad to hear you're back on the parps Sue ;).....I'm still perplexed as to why your neuts have acted the way they have, but am just glad you can still take the parp, am hoping for a good outcome for you x
I've probably missed you Kelly, but have a great holiday ! I think its very wise to lower your count before going on the parps, as it seems to be quite slow at first at least in my case anyway :) and so the less disease you have the better in my opinion.
Hi Mish x and yes Jan ! get a pic up so we can see you x
You all know where Im at as far as the parp at the moment, but am feeling well (apart from the bloated belly) and my colour is still good from dawn to dusk and so am convinced that it is doing something, even if it isnt as much as my expectations :). Am praying and hoping that it stays that way .
Talk to you all soon
Anita
x
- By Mish_E
- Posted April 2, 2009 at 9:06 pm
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Hi Sue,
There are lots of funky things in my Chinese Herbs - sticks, bits of bark, dried mushrooms and other unidentified brown bits. I boil it up and drink the juice. As I said it tastes and looks horrible but it works. It is all about antioxidents and getting the blood moving. I have been having them since the beginning and I swear by them.
I did get your message, sorry I did not get back to you. I went to, got distracted and never got back there. My hubby calls me 10 second Tom because I forget everything after 10 seconds. If I don't write it down I am screwed.
Will post with results next week...
Mish
- By sueoz
- Posted April 2, 2009 at 8:28 pm
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Hi Mish how is your ca125 has it gone down any further and also how is fatigue or are you used to the parps now.My Dr reduced my dosage to 8 tablets per day instead of the 16 tablets per day.He said they are affecting my white cells (this is not the norm parps are not suppose to affect the white cells however he says I am always different to how my body react to most chemo grugs).I just hope the reduction in parps work just as well as the high doseage,however I would like to go on the high doseage as soon as my white bloods cells improve.It is sad to hear that the parps did not work on your friend. I also have that fear in the back of my head what IF they do not work for me.But as long as the ca125 is coming down the doctor is happy. When I started my ca125 was 1805 after 4 ssession of doxyl(which eventually stopped working, I was switched to parps and I have been on them for now 4 weeks, 1 week I stopped due to low immune system.) My new ca125 is now 1080 still high but as long as it comes down I am happy. Mish what is in your Chinese tea that you are taking I might have to join you in taking it. I hope and pray that you get a good scan result on Monday. Please post as soon as you know. It is always good to hear from you.I know you are a busy working young woman. Mish I sent you a private message, did you ever receive it? Sue
- By Mish_E
- Posted April 2, 2009 at 7:01 pm
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Hi everyone,
Sue, sorry to hear that you are having immune issues. I did have one week that they were down but since then they have been ok. I drink horrible chinese herbs everyday to help with my immune system (I have to hold my nose and get it down as fast as possible). When I feel fatigued drinking the goo makes me feel energised and because it is a tea they are ok for me to have it on the trial.
I caught up with a friend this week who is on a parp trial for advanced breast cancer and her friend just got chucked off the trial because her cancer had grown by 30%... I don't know why but I have not even considered being chucked off and what would come next. Denial is a wonderful thing.
I have a scan on Monday and get the results on Thursday. Wish me luck.
Mish
- By KellyRilla
- Posted April 2, 2009 at 9:41 am
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HI Sue and everybody,
I keep watching for postings from you all on the parps so thanks for letting me know how things are going.
I had a carbo tx about 3 wks ago as the plan is to lower my count with that before going on the parp trial. It's a stand alone trial also randomized so I may only get placebo. I'm still not real thrilled with that and in the back of my mind still considering the Toronto trial.
About day 5 and 6 after my carbo tx I felt horrible and had a slight fever. I barely avoided going to the hospital. Wow! Let's hope that means the chemo is working. I never reacted like that in some 23 carbo doses previously. I had a lot of pain too. My doc says she'll lower the dose next time and it had been 8 months since I'd received any carbo so my body must have been shocked.
I feel fine now and I'm scheduled to leave tomorrow for a trip to Florida with some girlfriends so I'm happy! When I get home it's more chemo, a ca 125, and a new grandbaby due to arrive. Lots to look forward too!
I love to hear from you all and hope and pray that you are all responding well to the new drugs.
Teal hugs,
Kelly
- By sueoz
- Posted April 1, 2009 at 9:42 am
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Hi girls,
Just an update - since I last posed, I've been put back on the PARP inhibitors and have been taking them for a week now - although I continue to be neutropenic.
My onc has allowed me to continue taking the PARPs even though I'm borderline neutropenic most of the time, so I'm avoiding public crowds, etc... it's unusual since these PARPs are not meant to be doing this, but hey they're new drugs and anything's possible.
I was wondering whether anybody whose taken the PARPs has also had their white blood cells go down on them. No biggie.
Thinking of you all girls. How are you you going with the PARPS Anita, Mish, Vicki? Hope everything is also going well with you Kelly, hinsopa and JanP. Keep the posts coming :)
Sue
- By Mish_E
- Posted March 25, 2009 at 1:12 am
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Hi everyone,
I have logged in a couple of times and kept up with the thread but have not had anything interesting to add ...
Still don't but thought I would just say hi! :-)
Great news Anita about your last results, you must be pretty happy with that. And I do like your new photo.
Sue, you mentioned you have been told to take a glass of water with each pill ... holy moly!! I have not been instructed to do that and thank God. That would be very hard. Bummer about your bloods. Are they down because you have just come off chemo or from the parpys? Mine went down initially but went back up and have stayed there so far.
Mish
- By JanP
- Posted March 23, 2009 at 5:56 pm
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Congrats on the super photo Terrafly.
I might even put one of myself on. If I can find a flattering one that is.
I must just tell those of you who are currently hairless that I was standing in a Q at the post office last week when a lady suddenly said " Oh what beautiful hair you have. "
I laughed and said it was my post chemo hair and for once in my life I had the slightly curly hair I had always hankered after. She then said she used to be a hairdresser so I felt it was high praise indeed.
I don't need to colour it as it is a very flattering shiny silver with pale grey and darker grey highlights. I just wash it in the shower and let it dry . Sometimes I remember to comb it, but have got out of the habit. I finished my last Taxol/Carbo on Aug 8th and was completely bald. So there is hope after baldness!!
I think doxil / caelyx doesn't cause hair loss altho possibly some thinning. Mine is so thick now I wouldn't mind a gentle thin. I am not going to the hairdresser in the anticipation of the chemo saving me the money!!
Beat wishes All.
I am just going to look up the stuff you can have to enhance the blood cells and will send on the pm in CBN ,Sue What about a blood transfusion for anaemia? I had several during my first line therapy. It made such a difference to the exhaustion.
How we need this loving support to hold hands together as we try to go forward in knowledge and experience. Keep holding hands my sisters.
JanP
- By Terrafly
- Posted March 23, 2009 at 5:28 am
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Heyy Sue
Wow sorry to hear about your white count, I'm really surprised to hear you have it as a side effect of parp (if it is), but its bril about the drop in the marker count still.....at least you'll be back on them soon :).
I asked my Prof about the oral parp and he confirmed for me that they are are a different parp inhibitor apart from the fact the dosing and treatment intervals are different. I asked him to let me know if they make their way into a trial over here in the UK, I think my concern is if my iv parp is enough to slow the disease right down but not enough to keep me on the trial because of dosing or something, but i just gotta go with the flow, theres nothing i can do but hope it does more (or the same) in the next 6 weeks.
Keep us informed how you go, I'm wishing your neutrophils to go forth and multiply :)
JanP, wouldnt that be great if from you they found another genetic factor, though of course for us it probably couldn't be fast enough for us to benefit from it. Lets keep hoping for more.
Talk to you all soon
Anita
x
- By sueoz
- Posted March 22, 2009 at 7:56 pm
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Hi everyone!!
Thanks to everyone for keeping us all up to date with how you're going.
I thought it was about time to update you on my treatment. There's been some good and bad developments... the good news being my CA125 is continuing to drop (slowly, as I would like it - it's on 1,182 now)... however, I have not been able to take my PARP inhibitors for a week since I have been neutropaenic (neutrophils down to 0.9, the lowest I've ever had - I have also never had any neupogen or other similar immune boosters as they're too expensive).
As I was worried about being off PARPs for a whole week, I asked for a mid-week blood test, but it still showed neutropenia, but the neutrophils have started to rise again. So it seems that, yes, it does take about a week in most cases for neutropenia to resolve. I wonder if I have some sort of minor cold or infection as I didnt think that the PARPs do this to the white blood cells, but the consent form might've disclosed neutropenia as a side effect (as it does, I think, for anemia, which I also had last week).
I'll be going this Wednesday to see my onc, I'm hoping my neutrophils are up and I can continue on the PARPs.
For the last 3 days, I have had severe lower back pain (for which I have had to take over the counter painkillers - advil, mersyndol - don't want to go onto the prescription painkillers yet, though I sometimes rarely used panadeine forte). I've also had some breathing issues, so I'm worried and that's why I want to go back on the PARPs ASAP.
Not due for a CT scan for at least a month, but if this doesnt resolve soon, I'll request one (but I'm also worried I'll be taken off the trial if there's any progression - I've heard from others online that even if trial drugs work for some tumors and not for others, you could be taken off as that still means you're progressing, even though the drug might be working on some of the tumors).
Anita, I really like the new photo you've uploaded of yourself, you look so much different in it. I'm very happy to hear of your good news, that the PARPs are stabilizing your disease and that they continue to do this or start to shrink the tumors (of course, having them stabilised forever is just as good).
Kelly, hinsopa, JanP, nice to hear from you and I hope you're all doing well. Keep those posts coming!
Love,
Sue
- By JanP
- Posted March 22, 2009 at 3:30 pm
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Good news Anita. I know I sent you a pm on CBN but I want all you gals on Inspire to know I am still following this Parp thread.
Although I was not Braca positive they think I may have some as yet undiscovered inherited gene. and with a bit of luck they may discover a new treatment for my genetic type.
I have given them permission to use my bloods for research. Well its not much good to me when they already have several phials of it so they are more than welcome to it. I am surprised that they need my permission to use it.
Best wishes everyone.
JanP
- By Terrafly
- Posted March 21, 2009 at 10:07 am
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Hi Kelly
Thanks for the reply :)
I still have memories of post chemo treatment and so am glad to hear that you're bearing up, though if its any comfort, my middle is still growing at an alarming rate lol, I just cant seem to shift this belly no matter how hard I try.
Please just remember to be kind to yourself and give your body the best chance to recover with plenty of rest.
I gotta rush out now but will catch up with you all later on
x
- By KellyRilla
- Posted March 21, 2009 at 9:54 am
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Thanks for sharing your good news Anita. Remember, stable is good and I like your prof's advice on not giving up yet on the PARPs.
As Patsy mentioned I'm readjusting to high dose carbo txs again. It's not really that bad and I fear my husband has alarmed my friends on my caringbridge site. It's just that he cares so much. Sigh...
I just feel a general "yuckiness" in the pit of my gut. It makes me want to eat ALL the time. And bad stuff too, like pizza, chips and cookies. Ha! Nothing to complain to you troopers about.
Patsy here's the link to the page about the AstraZeneca trial in Canada with all the sites mentioned.
http://clinicaltrials.gov/ct2/show/NCT00679783?term=ovarian%2Ccancer%2CPARP &recr=Open&rank=6
I've almost called them several times as they have an 800 info number to see it they are still really open and take pts from the US.
Hope this helps and you all have a great day!
Teal hugs,
Kelly
- By Terrafly
- Posted March 21, 2009 at 9:09 am
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Hello girls :)
Well, I had my post scan appointment yesterday, and although the best news would have been that my tumor is shrinking and my marker count down, I'm still happy to report that my disease is stable at the moment........in other words, there has been no increase in size the tumors in my aortic lymph glands and nothing new has occured either. Although my marker count has risen by about a hundred this is markedly slower than the rate it was increasing before after 2 treatments.
The bottom line is, I can continue on the parp and will go for another 2 rounds , then have another scan and a review in about 6 weeks.
Yes this is good news and keeps me off the chemo for now :D.......My prof says its still too early to write the parp off.
So for another 6 weeks Im a happy girl :D
Hope you're all doing ok....love to you all
Anita
x
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