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

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  • dellmonica
    dellmonica Member Posts: 74
    edited October 2011

    Guess what!!  Guess what!!! My PET CT SCAN came back clear!!!!

    GEM/CARB/PARP combination seemed to work for me!!!

    I had my PET CT SCAN on Monday morning at 8am and they gave me my results on Monday afternoon at 3:30pm.  That was the quickest turnaround ever!!!   I still do not think it has sunk in!!  My doctor and I are playing phone message tag, so I have not really talked to him.  I do have a copy of my report/results and I have never seen a report like this since I was diagnosed with cancer.  The report usually has the size/number of each cancerous tumor or area that showed on the PET CT Scan !!  This report did not have any numbers indicating the size of tumors etc. because there were none!!   I continue to count my blessings!!! 

    The final impression on the report said: NO METABOLIC ABNORMALITY TO SUGGEST LOCAL RECURRENCE OR DISTANT METASTATIC DISEASE!!!!!!

    GOD IS GOOD and I am BLESSED with Friends and Family that care and love me!!

    I have an appt with my oncologist next Friday to determine the next steps!! I think, I hope, I pray that I am done with this mess they call cancer!!!.

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  • Luah
    Luah Member Posts: 1,541
    edited October 2011

    Dell: Doing the happy dance for you - that is fantastic news!

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  • cathmoons
    cathmoons Member Posts: 9
    edited October 2011

    Congrats, Keep up posted about your next steps.

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  • cathmoons
    cathmoons Member Posts: 9
    edited October 2011

    Towny, what's happening. Have you tried a doc in the city?  Supposed to be the best of the best at Sloan Kettering?  

    I am finished with chemo and decided to do another mastectomy rather than have 35 radiation treatments. I believe I have been poisened enough for now.  Surgery is on the 19th.

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  • dellmonica
    dellmonica Member Posts: 74
    edited October 2011

    Today I saw my doctor about the PET CT Scan results. He said I had great response to the chemotherapy protocal. Even though there is "NO EVIDENCE OF DISEASE" -NED, He recommended that I stay on the protocal. oh well!!

    He said I should complete 2-3 more cycles since the chemo has been  tolerable. I will have another PET CT scan after that and decide again how to proceed at that time. I so badly want to be done with this, but Dr K had a great point. I am in a good place as the treatment has work and we are not sitting here discussing that it did NOT work and trying to determine what the next treatment will be.

    I am so VERY THANKFUL for what I do have. I have a great PET CT  SCAN results!!!!  I think I can live with that and continue with the chemo!!  LOL!!

    Live is good and I am so ready to EAT some great food at the Taste of Georgetown this Saturday. I know I am so blessed as I continue to be able to enjoy food and not get sick!!!  The chemo wrecks havock on my stomach, but I never get sick and throw up -- so I have not lost any weight, ~~~DAMN DAMN DAMN ~~~ however I can eat various foods and it settles the stomach. weird -- just freaking weird!!!    My doctor in the office told me that he is one the few doctors that is NOT concerned about me gaining weight while on chemo -- go figure!! Now I will have EXTRA weight to drop!! oh well!!

    I contunue to be Livin' and Lovin' and Smilin'!! Peace and Blessings!!!

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  • spark
    spark Member Posts: 130
    edited October 2011

    Great to read about your great news Dellmonica! I also had a clear PET scan, but have been continuing in my trial. I have 9 more PARP treatments left. There are any real side effects so far, except for the fatigue. I work and work, then on the weekends, I sleep. I can't believe I am finally in single digits with the treatments. The total amount of weekly PARP is 24. So now I am down to just 9 more. I will be all done right before xmas! 12/22. Then I can't wait to get this creepy port thing out of my body as soon as possible. I feel it all the time, but it definitely makes the treatments more bearable for sure.

    Towny, my heart breaks reading how hard all of this is for you. I live on the West Coast, but yes, I have heard that Sloan Kettering is top of the line in cancer treatment out near New York, I think. I am hoping and praying that you have loved ones that are near you to love and cherish you and support you. Have people go to your doc appointments with you, that can be helpful bc they remember things that you won't because you will have so much else on your mind. 

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  • Deep81
    Deep81 Member Posts: 51
    edited October 2011

    Hi there,

    I was diagnosed with breast mets to the lung in September 2011, just 6 months after having FEC-T. I am on Gemcitabine and Cisplastin and so far i havent lost my hair. My oncologist said that in very rare cases do patients lose all of their hair-its usually thinning, but touch wood i havent had that and i have completed 1 cycle and am on part 1 of cycle 2 (2 sessions=1 cycle).

    In terms of PARP- its not available in Ontario, Canada as it failed phase 2 of clinical trials? I spoke to my Oncologist about it yesterday and he was very anti-Parp so i guess I wont be on that protocol. But the good news is that the regime i am on is working for me, i had chemo 2 days ago and the fluid was stable in my lungs-the Oncologist was expecting it to increase due to the aggressiveness of the Cancer but my symptons have improved alot in the past month since being on chemo so i have my fingers crossed!  

     I would reccomend you staying on chemo just for your benefit-the last thing you want is not to be on chemo and then it comes back in an aggresive form. It does suck being on chemo but being in a positive frame of mind, trying to be happy will work for you. Trust me when i got re-diagnosed i was in a funky mood, the first round of chemo was brutal and i just felt super low. I then perked up after chatting with my mum and now chemo isnt as bad as what it first was. The way you have to think about it is that you will overcome this. Dellmonica is an amazing example of how we can be NED. Keep smiling hun and keep strong

    Deep

    xx

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

    I am so confused about parp and the parp trials.It seems it works very well for some, so why have they cancelled trials? It seems so promising, and if it can work for some, it seems it shoukld be available for those who respond to it.

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  • spark
    spark Member Posts: 130
    edited October 2011

    I know for me, they don't tell me if my cancer is "responding" to it, since the point of it is so that it never returns. Parp is supposed to prevent it from re-occurring, so it will be a time will tell sort of thing... I know the trial I am in is pretty unique because the criteria was so specific. I still had significant cancer after my 8 rounds of ACT, then I had my lump + axillary node, then radiation, and came out with a clear PET. THEN I started my trial of 4 rounds of cisplatin + parp, then 24 weeks of parp. so... my trial has not been cancelled and I have no idea if it will work to prevent it from coming back, but I just hope and hope.

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  • Caseymmc
    Caseymmc Member Posts: 2
    edited March 2012

    I also participated in a PARP Inhibitor clinical trial in Pennslyvania after not having a complete responce to 8 rounds of ACT for my triple negative breast cancer. I did not get the PARP, only the cisplatin. 4 rounds every 3 weeks. My blood counts were so beaten down after ACT, surgery and rads that I ended up getting Shingles and Cellulitis during the PARP trial and have Lymphedema in my arm and breast as a result. I saw my Onc today and there is NED. It has been almost 6 months since my last round of Cisplatin and almost 18 months since initial diagnosis. I hope this Trial results in figuring out what to do with those of us with residual disease after Chemotherapy. I read Sparks comments during my treatment and it was helpful in getting me through the Trial. I hope you are doing well and that this treatment ends up being helpful.

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