PARP Clinical Trial anyone? or exp w CISPLATIN? HELP!!

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  • dellmonica
    dellmonica Member Posts: 74
    edited July 2011

    Did anyone hear that they are stopping the GEM/CARB/PARP trial after August 15 -- no new patients will be able to get on this trial.  It did not work as expected -- i just dont understand how it works for some ( like me ,nmiller1978, towny) and they decide to no longer pursue. -- I just dont get it !!

    Luckily I can stay on the trial cause it is working for me and I have few side effects ( neuropathy in my feet) . 

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  • christina1961
    christina1961 Member Posts: 736
    edited July 2011

    There is a clinical trial in Asheville NC and other locations (I think it is out of Indiana?) with parp inhibitor and carboplatin.  It is for those who have had neoadjuvant chemo and had residual disease left.

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  • Towny
    Towny Member Posts: 111
    edited July 2011

    Dear Dell

    I asked about that.. and all they said is that they have had good results and did not say anything about ending the trial... I have had no side affects except being tired... I am sleeping a lot ...

    I will ask again.  you know how fast the doc visits are.. geez in and out ... not sure what has happened to peoples bedside manners... I guess they do not have any.. if it was not for the parp trial I probably would not continue with this doc... he is nice just does not spend very much time with me.. I guess I am a little needy right now.

    I am going to work.. and that is about it. My breathing has gotten much better and I am eating etc... Keep in touch so we can exchange notes on our progress... hope all is well.

    T

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  • kathy1308
    kathy1308 Member Posts: 14
    edited July 2011

    I have done PARP inhibitor and it does not make your hair fall out. I am surprised to hear that They are using it for estrogen positive cancer. I live n bay area. I can recommend a doc to you but need to know if your insurance will pay.

    PARP side effect is minimal but cisplatin might cause a little problem.

     Let me know if I can help

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  • Towny
    Towny Member Posts: 111
    edited July 2011

    I am on the Parp... not too bad today.. I have had some issues with eating.. my breathing is better but still oxygen. I hope that goes a way soon... I am suppose to be on it for a year.

    Has anyone been on it for a long time and seen results....

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  • spark
    spark Member Posts: 130
    edited July 2011

    Hey All, sorry I have been out of it, I was travelling, playing "normal person" for 2 weeks! I am still on my PARP trial, and so far no real side effects except for some random tingling on my face. I did finally get the port in today. The procedure was not too bad. One of my nurses told me she had breast cancer 2 times, and showed me her port scars. that was reassuring. tomorrow they take the bandages off and flush it. I feel like a science fiction movie where i am half human and half android or robot. i dont know what it looks like yet so will see tomorrow.

    Towny: is the breathing prob from the parp inhibitor? I don't know if anyone has been on it long enough to speak about results. its supposed to prevent the cancer cells killed by chemo from repairing and growing back so it will be a looooong time (hopefully) to know if there are actual results. 

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  • spark
    spark Member Posts: 130
    edited July 2011

    dellmonica: so the port thing was a good thing? i have my next treatment on monday. that will be the first time they access my port. do you feel anything?

    cathmoons: i am so sorry to hear about how awful the treatments have been for you. that all sounds crazy, awful, and scary to be put in isolation, etc. i guess this is all of us in some ways, right? i have no idea if what i am doing is going to work or not. when i sat w the onc, i asked what are the side effects i should expect from the parp and she was like: "we are hoping you can tell us". that was weird.  but there is no other trial like the one i am on. 4 rounds (i only did 3) of cisplatin plus parp, parp, parp 3 weeks apart, then 24 weekly parp infusions. I am on week 4 of the weekly parp. 

    my pet scan came out clear so of course the temptation is to stop the trial. i have to fly to UCLA every single week for this infusion and still work full time. its rough. but i just keep hoping this is the miracle treatment. and i never have to deal w this cancer bitch again. 

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  • Towny
    Towny Member Posts: 111
    edited July 2011

    Oh my gosh.. I have had some crazy side effects... first of all constipation with just mucus coming out. I do not want to sound gross.. but geez no one told me it would be like this. I also blacked out today on the way home from chemo.. I think it was from the crazy wbc and rbc shots they gave me and they sent me on my way home. Thank God my friend was with me and she was having her daughter dial 911 when I woke up.. about 1 min or so... very weird!!! The shots are really causing me problems. one of them is leukine!!! I hate it!!! I did not go to the er I was fine after the reaction was over... but scary.

    MY breathing problem is still a problem. I am not sure what to do. I am on oxygen but my cough is becoming a little more presistent than it was!! No one seems very concerned. They keep saying wait for the chemo to work.. It is all going to kill me before it starts working!!!

    Next week is my week off so I can relax and hopefully get some energy back.. MY husband will be giving me enmuns. until things straigthen out!! He like that!!! ewewew

    PLease if any one has any pointers please send them my way.. I am getting discouraged.. at least for this week. next week I will be up and at them....

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  • spark
    spark Member Posts: 130
    edited July 2011

    Towny: Oh my gosh. I am so sad and disturbed and worried about you!! where are you? do you have any other options regarding oncologists? these all sound to horrific to me, i can't believe your docs are not concerned. i mean, I am not an onc, but almost blacking out and your breathing and your diarrhea, all of that sounds like a nightmare. I feel like the docs we have make a tremendous difference, and I have been really lucky. I am with Kaiser in San Francisco. My onc was always telling me to contact her with any, ANY concerns. and she was super responsive. I am so worried about you. I know you are on a trial, but are there any other oncs you can see??

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  • nmiller1978
    nmiller1978 Member Posts: 107
    edited July 2011

    Hey Ladies,

    I don't know why but I almost never check this board and have always stayed more on the stageIV forum but now I know where to find everybody ;-). I also heard they're ending the. PARP trial 8/15. Dell and Towny and alll the rest of us doing so well are actually not even being counted; I guess they simply don't use data from expanded access and the only stats being considered are from Phase 3...complete BS as far as I'm concerned. So yes, those on it can stay on it per MD request, but BiPar actually recommended it be diiscontinued for all who are not showing "obvious clinical benefit"....I get it but sometimes I really hate the FDA!!! I hear its being pulled for a complete revamp of protocol guidelines and that thiis drug wil definitely be back. As for me, still doing well although my cocktail has changed somewhat. I'm still having platelet/wbc issues so we dropped gemzar two weeks ago and went to just carbo/parp. That seemed to go well and my counts held for two weeks and then BAM, I had an allergic reaction to carbo on tues during my infusion. Apparently, the more heavily pretreated you are, the more likely a carbo reaction. Typically anything past 8 cycles puts you at inncreased risk: this was cycle 13 for me. Soooo, BiPar actually gave us the go ahead to treat with just Parp...not sure how I feel about that, asked them to add gemzar back and we're gonna see what happens. I'm off for the next two weeks and then its scan time!!! First one since my 'miraculous' pathology results. We shall see!!! Glad to see you're all doing well. My apologies for all the typos, my internet is down so I'm typing this on my phone...the keys stick a little bit!!!

    God Bless

    Nicole

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  • dellmonica
    dellmonica Member Posts: 74
    edited July 2011

    Towny:  Thank God for our freinds/famly/coworkers/caregivers!!!  I am thankful that someone goes with me to every treatment.  I have never had an immediate SE after treatment, but I saw it happen - so I have always been worried about that.!!  

    Remember I had a cough also and the  Gem/Carb/Parp made it go away -- so give the chemo a chance to kick in -- I am praying that you have the same results as I did and the cough goes away!!  I have not had any issues with breathing or the xgeva shot -- The neulasta shot ( to keep my white blood cell counts up) is a pain in the a$$/back sometime.  I take the claritin, but I still have some pain in the a$$/back sometimes.

    Nicole: I am glad that you found us!!

    Spark:  The port is awesome! I dont even get it numbed!!  I am so excited for easy access to blood and to get my chemo treatment -- the quick sting does not even bother me.

    Bad News:  My platelets were too low this week,so I did not get treatment, Oh well - c'est la vie/ such is life!! I am glad I am still living it!!

    Good News-- My current oncology office ( Alliance Oncology in Owings Mills,MD)  merged with the original oncology office ( Maryland Oncology in Columbia, MD), so in Septemeber I get to go back to my original doctor in Columbia and stay on the trial.  I am so happy about that because I LOVED this office.  I only changed Doctors office due to the trial being at this other office in Owings Mills,MD.  15 minute commute vs 30-45 minute commute -- yeah!! 

    Resting and Reading today --PEACE and BLESSINGS!

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  • cathmoons
    cathmoons Member Posts: 9
    edited August 2011

    Turns out it was my heart, a day in the hospital and a cardiologist later my ocologist dropped the neupogen from my regime.  Won't miss the daily injections...  Felt fine on the 10th day,  next chemo is Wednesday, not looking forward to it.

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  • Towny
    Towny Member Posts: 111
    edited August 2011

    I am doing better. I am still on oxygen but not so much .. was in the hospital on Sat with chest pain. It was pnemonia.. The doc office said the black out was probably the pnemonia coming on!!!

    I have to say I am a little disapponted in my onc office.. The hospital took very good care of me and I was there only one night!!! So the pnemonia was small and not too bad.

    I will be back on treatment on Tues and seeing the doc!! I feel  alot better today and hopefully this weekend will be long and good ... take care

    Remember .. look up areyoudense.org

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  • spark
    spark Member Posts: 130
    edited August 2011

    Wow, I have not heard anything about my PARP trial ending. I still have 20 more weekly infusions left... is that bc its not working?? the trial I am on is done through Hoosier. 

    The port is in folks. And I had my first infusion with it last week and it definitely felt weird, but yes it was better than them digging around for a vein in my poor arm. I go again tomorrow. I still have the steri-strips on there, they are barely hanging on and the surgeon had told me to leave it on there until they fall off on their own.

    welcome nicole. what was your allergic reaction? are you ok??

    towny, thank goodness you are finally feeling better! 

    cathmoons: did you get your next chemo? how did it go this time?

    dellmonica: that is great news about your oncology office! our providers make a huge difference so am glad you will be back to the doc you loved!

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  • jloon
    jloon Member Posts: 30
    edited August 2011

    I'm starting my 4th round of Gem/Carbo/Iniparib. Seems to be working - will have pet scan with the next month. Having similar issues with bloodwork but seem to have it all figured out now. Check out my blog at jlunot.blogspot.com/ or email me jloon@shaw.ca

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  • dellmonica
    dellmonica Member Posts: 74
    edited August 2011

    Cycle 5 of Gem/Carbo/Iniparib is done!!   Platelets were low -- but not too low to prevent treatment!  Neuropathy in my toes is still there.  Hopefully I can make it thru one more cycle  with all 3 drugs and then get my  PET CT scan  after that.  

    I gave myself the Neulasta shot on Saturday and I have been taking Claritin-D and Claritin everyday.  I took Claritin the day before the shot and 10 minutes before the shot and then I took more Claritin Saturday night and then Claritin on Suanday and Claritin again on Monday and Claritin D again today!!  I hope I dont overdose on it!!!   I had some back/muscle spasms last time -- so I am trying to prevent that again this time by taking Claritin quite often... Its a GOD awful pain!!! and I hope no one else has to go thru it!! 

     I have a staycation for the GranPrix in Baltimore and I did not want to be effected by chemo that weekend!!-- so I am on break for 3 weeks!!! yeah!!! no chemo and then I start again after Labor Day.!!  Peace and Blessings to you all!!!  -- you may not hear from me cause I am going to try to stay busy!!


    Towny/Jloon:  How are you doing?  looks like we are on the same cocktail!!!

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  • Towny
    Towny Member Posts: 111
    edited August 2011

    Dell!! Good to hear from you!! Glad you are doing well.

    They won't let me skip a treatment... I have to follow their schedule..plus I am still on oxygen. I cannot get rid of the cough and my breathing is messed up .. I no longer can walk up and down stairs or anything!!! I am going to go to a plumonary guy I think... To see if they give some treatments to help. Who knows.  Some days are better than others. I had treatment yesterday. today at work with my ox.   I am able to work because it is a desk job.. not too much walking.

    I was in the hospital for pnemonia small case .. one night stay. they did a ct scan and one month before I had a ct scan at the same place. Compared and things have shrunk!!! So I believe things are getting better.

    The shots are killing me as well!!! The chemo makes me a little sick .. The day of chemo is tough but after that it is not so bad... But the shots!!! They scare me!! It is very painful... I use clariton and tyenol tooo!!!! I think I might get the big guns out and get some percoset .....

    I am praying for you guys and think of you often!!!! Check my facebook out Dell... Areyoudense.org too

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  • dellmonica
    dellmonica Member Posts: 74
    edited August 2011

    Claritin REALLY REALLY REALLY HELPED this time!!!  I think it is a combination of Claritin and Calritin D that seems to help!!  I had one minor minor back spasm during the night - but otherwise nothing so far -- I think/hope pray I am out of the woods today!! 

    Towny:  I am glad the chemo is working for you!!  Peace and Blesisng and sending prayers that your breathing/oxygen issues are resolved shortly!! I am not really skipping chemo -- its just pushed back 2 weeks -- as if my counts were not good enough!!!  They do the same thing if your white blood cells are too low or your platelets are too low..

    Spark:  You seem to be on a different regimen then Towny, Jloon and I.  Do you get PARP every week?  Also - Next time just take the steri strips off after a week -- they get all gunky and are not really doing anything after a week or 2.  My nurse ripped mine off -- cause she was sick of looking at it!!  lol!!!  The scar was completely healed and pretty smooth!!  I was just too scared to touch it!! 

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  • nmiller1978
    nmiller1978 Member Posts: 107
    edited August 2011

    Hey Ladies,

    Good news for me on the PARP front. If you guys recall, I had a complete pathological response  on this and 24 nodes and both breasts completely cancer free at bmx. I'm a stage IV patient and had liver involvement from go. The concern was that I would progress metastatically while off for surgery/recovery. When I returned to treatment on 7/1/2011 I had one issue after the next. Toxicity, allergic reactions etc. Long story short, I have only had 2 actual full treatments (at a 60% reduced dose) since May 10th. I've still been getting BSI 201 on days 4 & 11 but was always told this was NOT to be used as a solo agent. My PET scan was 8/12 and I was TERRIFIED... Got the results Tuesday: "essentially Negative PET/CT" no evidence of malignancy or abnormality.. WooHoo!!!! Still clear even with next to NO treatment. This stuff is AWESOME. 

    SPARK: My allergic reaction was a little scary. My heart rate jumped about 50 point diastolic in under a minute, I had a pounding headache ( probably due to hear rate) my skin became bright red and VERY hot to the touch. Had a similar reaction to percocet in the hospital so recognized the signs & spoke up. The nurses freaked and flew into action. Steroids, iv flushes etc and had to keep an eye on my pulse/ox and heart rate  for awhile. My reaction was moderate, in severe cases it can lead to respiratory distress and anaphylaxis. So to all my girls on PARP with carbo: Carbo reactions aren't common, but they aren't rare either. Keep an eye out for symptoms and SPEAK UP!!! Usually around treatments 6-8. Hope everyone is doing well. Towny, I hope you're feeling better ;-). 

    God Bless

    Nicole 

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  • jloon
    jloon Member Posts: 30
    edited August 2011

    nmiller so happy to hear your great test results!! My PET will be soon (I hope) but it "seems" to be working - my skin mets are WAY better and I'm not having the body aches and pains. I've had two delays where we've waited a few days to start Day 1 because of bloodwork but now I'm on neupogen and Eprex so it should be better. However, the last delay was because my platelets were too low and I've heard there isn't anything to help with that? Other than that I've been pretty good - taking Amend for nausea (and Decadron before each chemo day) and that seems to work. I've gained A LOT of weight and that sucks because I already needed to lose about 10 pounds - now it's more like 20 :( I've been very tired and it's hard to take care of my kids some days but I do have a lot of support.

    There is a woman on the TNBC discussion forums who is on her 20th cycle!! Her doctors feel like if it's working she should stay on it for as long as possible. Although I can't stand the thought of chemo and it freaked me out when I first read that, I'm starting to think that might be the best idea? I just know that I had a great response to Gem/Cis/Avastin and had a NED pet scan and after coming off it for only 2 months the cancer was back and way worse. So now I'm a bit scared to stop anything that even works to stabalize it. Any thoughts???

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  • Towny
    Towny Member Posts: 111
    edited August 2011

    jloon

    I feel the same way... I was clear for a year... xeloda for 6 weeks and because of the PARP trial I had to go off of all the chemo!!! It came back fast and now I feel like why do they make jump through hoops to on a trial. Now there is more cancer for the chemo to kill and it will take longer. Why did they just not give us xeloda or something all along ... the thought of being on chemo for the rest of my life is scary.. but what are we suppose to do.

    If you think about almost all breast cancer women are on some drug to keep the cancer away... I wish they could figure something out for the TN!!! NOW!!! I know women who have to go and do herceptin once a month... others take pills.

    Honestly the xeloda was working pretty well for me. NO side effects and it did not really progess .... who knows

    I had a blood transfusion yesterday.. feeling better today!!! I have been on my trial july and august.. I will be going on my 4th session at the end of August.

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  • spark
    spark Member Posts: 130
    edited August 2011

    I did 3 rounds of cisplatin plus the parp, and now i am doing 24 weekly parp. its rough bc i have to fly to LA every week for it. but its not chemo, so that is good. i feel like metal is poking out from my port. am such a cyborg.

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  • cathmoons
    cathmoons Member Posts: 9
    edited August 2011

    Been a bit of a rough ride but I feel like a baby complaining when I read what some of you amazing women are going through.  Just had my second to last chemo, increased dosages by 25% (a reward? for recovering so well from the first two treatments?)   Basically 11 good days, and I use the word loosely, 10 really bad days.   Back on Neupogen injections, but had another severe reaction, heart troubles.  So I am done with those forever.  Heart doctor today, to access the damage.  One more treatment, middle of September and then a reprieve until I begin radiation, 25 treatments...  Certainly doable, though it didn't feel like a few days ago. 

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  • Towny
    Towny Member Posts: 111
    edited September 2011

    This is an update.

    Got  biopsy finally of my lung. it is cancer... undefined.. so that is not good.

    My rocket scientist oncologist has turned out to be a bit of a looser. He does not communicate at all.

    So I am debating where to go if I should go or what....

    My clinical trial just finished the 4th round.. so should I wait and see what happens??

    My lung capacity is 33%!!! Yes that is 33%...

    If anyone has any suggestions please let me know asap..

    I have great insurance and can go anywhere.. I am ready to do so!!!

    Please remember check up on your doc ask questions.. Ask them to look at your scans with you!!! Do not take the written report at its word... everyone makes mistakes...

    Have your doc go over them and ask questions!!! I am sure a lot of have never done that..

    Lesson learned!! please I hope this helps someone!!

    I an still going to work and that is about it.. the biopsy after affects were bad and I coughed non stop for 12 hours. so I am very sore from that.. Other than that .. chemo no problem...

    take care and I will update later

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  • cathmoons
    cathmoons Member Posts: 9
    edited September 2011

    I once read, though long ago, that faith in your doctor is the biggest contributing factor to getting well.  If your doc is not treating you like you are his/her favorite patient, find another.  I know it's hard, I did it too, but I have never looked back. 

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  • Towny
    Towny Member Posts: 111
    edited September 2011

    I left the trial .. it did not work for me. I never saw my onc either. He never called or anything. Going for second opinions.. I hope it is not too late. Hospice is here but just for a little support. I am still on O2... Stopped working for a while. trying to get back to it soon.

    Had a lung biopsy and plueral infusion removed.  It was awful but now things are settled down and I am sleeping and eating better. Of course I am off the chemo!!!

    Please give me any advise I could use it right now. I am able to get around the house but too much walking and I am gasping for air!!!!

    NOT one call from the onc!!! what a looser!!!!!

    let me know how everyone else is doing. I think I might of been allergic to some of the chemo or parp stuff!!!?? not sure.

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  • dellmonica
    dellmonica Member Posts: 74
    edited September 2011

    Towny: I just sent you a "private message" before I saw this one.  I am sorry that you had to get off the chemo.  Sending prayers up !! 

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  • bak94
    bak94 Member Posts: 1,846
    edited September 2011

    Towny, I can't believe that the doc did not call you. that is just awful! Have you gotton in to see other doctors for your second opinions? Maybe some of the gals here will have a recommendation for a different doctor for you. Is your lung function better now? I know you mentioned it was something like 30% before. Thank you for the advice about asking doc if they look at scans, I did ask mine and he said he always looks at them, and I think he is a bit obsessive about it by the way he was talking about it. Thinking of you, please keep us posted.

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  • Towny
    Towny Member Posts: 111
    edited September 2011

    This is from Towny!!!

    I am not giving up!! I feel lots better. I am still on O2, but I went to work and am out and about just a little bit. I am eating and sleeping well. I am going to find another doc. I live in the long island area of NY... any suggestions...

    I am going to try to go to Long Island Jewish Hosptial in New Hyde park.. not sure.. what to do

    Any suggestions... let me know. Also what chemo options??!!!!

    Dr Jeff Vacirca is the one who never called me back from North Shore Hemotology

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  • bak94
    bak94 Member Posts: 1,846
    edited September 2011

    Towny, can you go back on Xeloda? It sounds like you were have a good response from that one. Also, what about abraxane/avastin combo? It is what I am on right now and my positive im nodes have resolved, at least that is what the latest ct said, now I am waiting for results of an mri. I am on the West Coast, so i do not have any doctor recommendations, unless you can come here! I adore my doc, he seems to do things a bit differently than alot of docs, at first that worried me, but I think he doesn't just follow standard protocol, he really looks at the patient and customizes a plan for each. I am sure there must be very good doctors where you live, maybe posting on another thread asking for recommendations might get you some names.

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