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

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spark
spark Member Posts: 130

Hi there,

I am in a clinical trial that is CISPLATIN plus PARP,  4 rounds, 3 weeks apart, then 24 weeks of weekly PARP inhibitor infusions. 

I completed DD AC/T in Oct, surgery in Nov, then rads in Feb. My ONC is concerned my cancer will come back and so referred me to this trial. I am miserable thinking about getting chemo again, losing my hair, feeling like crap, etc etc etc...  being sick, sick... was finally getting used to having my short hair and now lose that. 

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Comments

  • Suze35
    Suze35 Member Posts: 1,045
    edited April 2011

    I am so sorry you are in this position. I cam empathize, as after chemo/surgery, I had 5 positive nodes, extra nodal extension, and cancer in the axilla tissue. I had a PET Monday that showed 3 new nodes that were missed.



    I am either going to do a clinical study with Avastin and metronomic chemo or a combo of Cisplatin/Gemzar. It sucks, knowing more chemo is coming, but I think your doctor is doing the right thing. There are no studies to show more chemo is effective, but more doctors are doing it, which makes me think they have seen some success.



    If you can get the Parp trial, that would be great! They have shown promise for TNs epecially. Being in a similar situation, I am choosing more chemo, but you have to make the best decision for yourself.

  • dlcw
    dlcw Member Posts: 107
    edited April 2011

    spark - I am on something sort of similar...neoadjuvant Gem/Carboplatin/PARP.  I think Carboplatin is a bit kinder than Cisplatin so I'm not sure if my experience is really comparable to what you might have with Cisplatin, BUT.....the combo I've been getting has been very manageable.  Minimal nausea once I got the right meds, only thinning of hair, most days are really good.  Have seen huge reduction in size of my tumor - surgery coming in about a month to see if it's all dead.  Is your ONC recommending this additional chemo b/c you had residual disease at your surgery?  I think there's a good chance you'll find it easier than the AC/T - I have that coming up next and everything I've read sounds like it's harder than what I'm doing now...just not sure what the difference between carboplatin and cisplatin would be.  Good luck!

    dlcw

  • spark
    spark Member Posts: 130
    edited April 2011

    Hey Suze35, your situation sounds awful!! I totally hear you. am so dreading more chemo... how do you cope??

    DLCW: AC/T was really rough. AC worse than the T. My ONC is worried it may return. She was hoping for a complete or more response to the chemo, but yes, after surgery there was more disease in the lymph nodes than she had hoped. 4 out of the 5 lymph nodes removed still had cancer. how many round of the stuff are you getting? are you in the stanford trial?

  • Suze35
    Suze35 Member Posts: 1,045
    edited April 2011

    Spark - Coping is tough, but I tell myself that I'm not Stage IV at the moment, and all of my doctors were expecting it.  The bad news has come out slowly, so that I've been able to absorb one thing before another hits.  But it still sucks, no doubt.  I'm preparing myself for the worst, but keeping hope alive - there are others who have been in my position who are 5+ years out, and I have to focus on that.  I have also really changed my diet and am working on getting my exercise to 60 minutes/day.  At least I can control that!  As for more chemo, well, I'm in the "bring it on phase" simply because I will do everything I can to be here for my kids.  I'm not looking forward to it by any means, and check back in with me when I'm in the middle of it lol, but I'm trying to focus on what it can do for me rather than how it will make me feel.

    I hope you are able to come to a decision that you feel comfortable with, I know how hard this is.  Hugs to you!

  • dlcw
    dlcw Member Posts: 107
    edited April 2011

    Spark - yes, I'm doing the trial at Stanford - 6 3-week cycles of Gem/Carb/PARP.  Two weeks of chemo on Mon/Thurs, then a week off to recover.  This coming week will be the second week of Cycle 6 so I am almost done.  I did this trial because I had read good things about the PARP, and they also told me I could get the 'standard' chemo afterward - I looked at it like an opportunity to get bonus chemo and I wanted to go after this as hard as possible.  Good luck making your decision!

    dlcw

  • Towny
    Towny Member Posts: 111
    edited April 2011

    I am triple neg was dx 10.09 ... now it is back in my t1 vertabrae

    getting on a PARP trial in east seatucket ny Dr. Vacirca is doing it!! This looks like the only hope any tnbc have!!! I am hoping to make this go far away. I was wondering what the side affects of the chemo with the Parp in it... I will be getting the gem/carb/parp combo. I am also getting rads on the back... please let me know Thanks

    I had the usual A/C surgery dbl mast/more chemo/rads and it still came back within a year!!!

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

    I am still at the staging part of the game, could be stage 3 or stage 4. My issue is I had chemo 8 years ago, ac and t, so doc says ac is out of the question. He is thinking of starting me on weekly abraxane for 12 weeks, I;m afraid that is not enough. He mentioned the parp, especially if my brca comes out positive, as it is supposed to be effective in brca+? Any thoughts? I am so wiped out from crying and lorazapam. I need to take control of my emotions and go into fight mode. Aslo, I may be getting chemo before surgery. Still haven't had pet scan yet, next week sometime.

  • NannaBaby
    NannaBaby Member Posts: 510
    edited April 2011

    I am on cisplatin and navelbine... cisplatin and navelbine on day 1, only navelbine on day 8.  21 day cycles.  I've done 2 cycles so far.  It is easier than AC+T! Although I have nausea after cisplatin that lasts a week!  I still have my hair. I don't have any mouth or taste issues. No body aches.  Some tiredness.

  • tibet
    tibet Member Posts: 545
    edited April 2011

    bkj66

    Sorry to hear your 2rd dx. Did doctor say it is a new primary? What was your dx the first time? Was it TN? If the recptors change this time, then it is for sure a new primary and a new primary has better prognosses than recurrence. What does your doctor say?

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

    This is a new primary for me. Had a second opinion and this onc said I could do more ac. I am so confused. I see the surgeon again tomorrow, after they discuss me at the tumor board. Oncologist suggested surgery first. I had all my scans and they came out clear, except for the internal mammary nodes, which I already knew about from the mri.

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

    Spark, did you have good response with the ac/t?

  • spark
    spark Member Posts: 130
    edited May 2011

    Hey all. omg. is this nightmare ever over? I went forward with the trial. I was randomized into the chemo + parp, which is great vs just chemo. I had my first dose of the CISPLATIN + Parp (day 1), then parp (day 2), parp (day 3). then bam, hearing damage/loss. I called my regular ONC and my trial ONC and they were both shocked to hear this happened with my very first dose! They said that is very rare. wow. lucky me. so I had a hearing test, and they said I had minor/mild hearing damage in both ears, although I was feeling it more in my left. I got tinnitus (ringing in the ears), although it sounds more like a high pitched sound rather than ringing, but also loss in my ears so that it feels like I am underwater or there is a sock in my left ear. In public places or with more people like in meetings at work, i was really struggling. I couldn't hear or distinguish bw people, like no depth in my hearing if that makes sense. so then they put the trial on hold and i was FREAKING OUT. I already completed chemo (AC/T). Technically speaking, I should have no more cancer in my body. I completed chemo, surgery (lumpectomy + axillary node dissection + radiation). I didn't have a PET bc I started this trial. So my onc was calling it an insurance policy. This is the only trial of its kind, where there is no current evidence of disease. so what the hell am I doing?? who chooses more chemo?!?! so then I had pretty much decided that I was done. Quiting the trial. But then, they had me take another hearing test 2 weeks later and it showed a very slight improvement, which was shocking to me. The first ear doc told me the damage was permanent. The 2nd doc told me that most of the time, its permanent, but there is a slight chance it could improve. So then both my regular onc and the trial onc want me to continue and they said they would delay the next round (#2) an extra week (4 weeks vs 3) to allow more time to heal AND  lower my dose from 75 to 56mg. Still, there is a chance that I will experience more hearing damage and that it will be permanent. No guarantee. my regular onc said we should move forward with the trial and take each treatment one at a time. If I get hearing damage again (worse than before), then I will quit. Sucks. Why do I have to decide on my hearing vs my life?!?! But yes, parp is supposed to be promising for brca positive and triple negative folks, bkj66. I tested negative for brca, but I am triple negative. and stage 3c. so my 2nd round is this monday. am dreading it.

    nannababy and dlcw, when you say "thinning hair", what does that mean??? my hair is finally grown back from the AC/T. although its crazy and curly and I have a crazy fro. 

    bkj66, I don't know about a "good response" from the AC/T since I didn't have a "complete" response. I think my onc hoped it would all be gone. but it wasn't, which they found at surgery from the path report. hence the trial, and more chemo. 

    towny, I don't know about side effects from the parp. But from the CISPLATIN, I had the hearing loss. I had some serious exhaustion. and some queasiness, but managed enough with tons of meds (aloxi in IV, decadron, some patch thing behind my ear, emend, ativan). 

    dlcw: congrats on almost being done!! what are the next steps for you? and how has your cancer responded?

    suze35: hang in there. how are you feeling? what did you and your onc decide in terms of next treatment?

    also, they want me to get a port... i really hate the idea, but with 3 more cycles of chemo + parp, parp, parp, all IV, then 24 weekly IV parp, and my veins being jacked up, they are pushing me for it. what do you guys think!?! is it painful? can you see it?

  • dlcw
    dlcw Member Posts: 107
    edited May 2011

    Hi Spark,

    I am so sorry to hear about the side effect with your hearing, but glad to hear it improved a bit.  To answer your questions - 'thinning' of hair for me was mostly when I brushed my hair there was definitely more in the brush and on the bathroom counter.  By the time the trial was over I felt like my hair was much flatter due to loss in volume, and looked kind of stringy....but, I still had good hair days where it looked pretty much like it always did.  Definitely not hair loss to the extent that anyone would notice when i was out in public.

    As to the port - I love mine.  The surgery to put it in was short and outpatient.  I'll admit it was a little wierd feeling the first few days - not painful really, just a little sore and a wierd feeling of being aware there was something in there.   Now I don't even notice it - mine is on the side opposite my tumor, right underneath my collar bone.  I met 3 women who were doing the trial with peripheral IV's instead of a port and they were all having issues with veins by the end.  Multiple tries to get the IV started, and pain during the infusion - we had 6 cycles, 4 doses of PARP each cycle (Day 1, Day 4, Day 8 and Day 11).  If you know where to look you can see that I have a port because it creates a lump underneath the skin, about the size of a quarter and sticking up about 1/4 inch or less.  It only shows when I wear a tank top - normal necklines/sleeves completely cover it.

    Next steps for me are surgery this coming Monday, and then adjuvant chemo based on the path results from that.  My tumor was initially about 4.5 x 2.5 and I had one node that was about 1 cm that could be felt.  The tumor started shrinking (on clinical exam) by Cycle 2 and is now a very soft, small lump less than 1 cm.  Node shrank to normal size and couldn't be felt at end of Cycle 2. 

    I had a MRI after Cycle 4 and it still showed an area of abnormality larger than what could be felt, but the shape of the abnormality was definitely different than the shape of the tumor when I started, and the overall area was decreased by about 2 cm.  Apparently they have been finding scar tissue left behind from some of the larger tumors and there's a good chance that's what they are seeing on my scan.  I had a second scan at the end of the trial and will get results of that one later this week - hoping that they saw additional shrinkage in the abnormality.   After the adjuvant chemo based on the pathology report I will follow up with radiation.  I will have axillary node dissection along with the surgery.

    Also - i'm BRCA negative and had my tumor really respond to this chemo.  Before I started the trial I had read that PARP seemed to be more effective in patients with a BRCA defect, but my onc indicated they were seeing 'activity' in TNs that did not have a BRCA defect - that was definitely the case with me.

    I am sorry you are dreading the next round - and it is not fair that you have to choose your hearing or a reduction in risk in the future.... Best of luck with making your decision. Will be hoping to hear good news re: continued improvement in your hearing.

    dlcw

  • Suze35
    Suze35 Member Posts: 1,045
    edited May 2011

    Spark - I'm so sorry to hear you are having this problem, and you are right, it is horrible that you have to seemingly decide between your hearing or your life. I don't know what I'd do in your shoes to be honest. I wish you the best for your next round.



    I'm really glad to have my port. Being IIIc also, I plan on keeping it for years. I don't even notice it now, and it makes infusion so much easier.



    I am done with week one of radiation, 5 more to go. We've decided that I will use Avastin regardless of what chemo we go with, but my MO hasn't settled on a combo yet. I'm meeting with Dana Farber on Thursday about their clinical trial, but I am afraid my supraclavicular node will disqualify me. It could just be reacting to surgery and overloaded, but if not, then I don't fit their criteria. I'll know more on Monday for sure.



    dlcw - good luck with your surgery! It sounds like you are having a great response to your chemo, which is wonderful!

  • spark
    spark Member Posts: 130
    edited May 2011

    dlcw: good luck with surgery!! what will be your chemo afer that? what kind of surgery are you doing? i did lumpectomy plus axillary node. are you nervous?

    suze35: what trial are you trying to get into? i actually originally tried to do the stanford parp trial that dlcw is doing, but they saw something in my PET and it turned out I had some cancer in my supraclavicle area too so i was disqualified since that bumped me into stage III-C "later stage" vs early stage. they did a freakin biopsy on me in that area and that sucked! was so weird. so that's why i went the normal AC/T dose dense route, then surgery, then rads. and now doing the trial for extra insurance. how are you doing w radiation? so much easier than chemo. 

  • Suze35
    Suze35 Member Posts: 1,045
    edited May 2011

    Spark - it is a trial at Dana Farber, designed for post-surgical patients with residual disease. Two arms, randomized - one is exercise/diet, the other is metronomic chemo with Avastin for 6 months, then Avastin every 6-8 weeks for another 2.5 years as tolerated. I met with the doctor today and she was fine with my supra node because I'm getting radiation. I signed up for it, and I'll get randomized in about 4 weeks. Fingers crossed for the treatment arm!



    So far so good on radiation! Definitely easier, although he is giving me a bolus every other day, so I'm pinking up a bit already. But I love my RO, and I have a cute tech which makes it easier, lol.



    That supra node sucks, doesn't it? My doctors said no biopsy as they don't want to disturb it. Let's face it, we know it is cancer, sigh. But no other mets still, so I'm hanging in there. How are you holding up?

  • Towny
    Towny Member Posts: 111
    edited May 2011

    Just chiming in .. I have had carboplatin with my first go around. My regiment was just like Jennifer Griffin from Fox news. She has a blog about TNBC... She says she is cured. We were dx at the same time with about the same size tumor etc... but mine came back and she looks good on Fox news.. she turned into a vegan and went holistic ... she has a chef and a private trainer... not sure about the diet thing... I think most of us eat pretty well and exercised before all of this..

    any way... I already have a hearing problem.. before all this started.. I will go deaf if I have to, to get rid of this stuff.  the hearing thing should be YOUR decision not the docs!!! That is what I think.. My rads are over.. I did not need them all it appears maybe some of the cancer is dying off in t1 veterbrea.. I will see my MO on Monday and we will go from there.. I first had to do this line of treatment before I qualified for the PARP... so at least I have a back up if the xeloda fails... Too bad we have to jump through so many hoops for clinical trials... Have a great weekend...

  • Suze35
    Suze35 Member Posts: 1,045
    edited May 2011

    Towny - I had carbo my first go round too, and boy did it fail.  So you aren't alone there!  I am doing a better diet and exercise regimen, even though I had a normal BMI before this began.  I believe that there is an insulin connection with TN, so I'm just doing what I can to help.  But I'm not going crazy - wouldn't it be nice to have our own chefs and personal trainers???

    So sorry you have to jump through hoops to get into the PARP trial.  But we do have several chemos to use, and I wish you luck with the one you are on.

  • Towny
    Towny Member Posts: 111
    edited May 2011

    Dear Suze

    What do you mean it failed?? You mean for me or for you...

    I know for me I have it again, but you just got done with treatment just a while back. Make sure you keep up on the PET Scans .. geez I really never felt my stuff come back until 2 weeks after the PET scan and I knew what was happening. If it had been the other way around I would of lost my mind. I had 2 nodes too... My  med onc told me he did not think I even needed rads the first time... but my tumor was 8 cm... it shrank down to 5 cm.. but still!!! I am glad I did all that I could do at the first go around. Because now that it has come back I would of been crazy thinking would of should of could of stuff.

    I also was wondering about the insulin thing too. I could stand to loose 20 pounds... but I have not. I lost 30 pounds during A/C and gained 20 back... I am trying to enjoy my life and I do exercise and eat well.. I need to be more motiviated to eat a little less.

  • Suze35
    Suze35 Member Posts: 1,045
    edited May 2011

    Towny - I'm sorry, I meant Carbo failed me. My cancer responded to the AC, but about 2/3 of the way through my Taxol/Carbo it started to re-grow and spread we believe. I ended up with more cancer after chemo than when I started. So my chances of a recurrence are really high unfortunately. I found my supraclavicular node after surgery, and we are treating it with radiation and then I'm moving on to the clinical trial.



    Thankfully my MO is watching me closely. I've had two PET scans already, will have another in 4 months, then every 6 months until (if) I'm 3 years out. I agree, the earlier any spread is caught the better.



    I really do feel better eating healthier, but I don't always succeed. A part of me wants to just enjoy good food and wine, why not? But then I think, what if it helps? So I probably eat healthy 75% of the time. I hope it helps me!

  • NannaBaby
    NannaBaby Member Posts: 510
    edited May 2011

    I've done 3 cisplatin so far... and side effects seem to be accumulating :( Fatigue and nausea +++ for at least 1 week! I still have my hair, no thinning :)

    I had mild ringing at the start, but not anymore.

  • helenalda1
    helenalda1 Member Posts: 1
    edited May 2011

    Hi - I am also triple neg and just finished a trial of TAC with avastin as part of a clinical trial and had surgery last week.  I will be undergoing radiation for 6 weeks but dont know yet when that will start till i see my surgeon in a few days.  What I am curious about is what you are saying  that your dr is concerned about your cancer coming back.  Is that because you are triple neg or is there something else they found?  I am so worried mine will come back because our type tends to come back more than others and I am concerned about what can be done if it does considering i have already done chemo (finished about 6 weeks ago a 5 month chemo run).  I hear you exactly: I hated chemo, absolutely hated it - wound in in hospital twice from side effects of avastin.  I am encouraged to hear your news that they want you to go through chemo again because that means they feel they can help you - I hope when it comes to my turn, that I will be considered again for chemo if I needed it.  It was a horrible experience but I will endure everything to get rid of this disease - Good luck with your treatment - 

  • TEK2009
    TEK2009 Member Posts: 62
    edited May 2011

    Hi there

    Have been reading all your posts, just got dx mets in lymphatic system i think. Really not sure I can face chemo again. Anyone had mets and now finished second lot of chemo? Did it work?

    Am not convinced as mine clearly did not work first time.

    Thanks T

  • dellmonica
    dellmonica Member Posts: 74
    edited May 2011

    Hello to my sisters in the struggle!! 

     I am currently on the Gemstar/Carboplatin/Parp trial at Alliance Oncology in Maryland.  I began on March 25, 2011.  The Parp was added during my second cycle via the lottery selection. 

    This is my third round of chemo in 4 years! I hope/pray this one works. After I finished my 1st round in 2008 -- I said never again -- Chemo kicked my butt back then and I said I would never do it again. Its weird how my life got in the way and then cancer came back in 2010 and I decided I would try another chemo cocktail cause I really enjoyed living my life in 2009

    I am triple negative with mets to neck, hip bone, and few other places. I had lumpectomy and radiation in 2008. I was on Taxotere /Cytoxan chemo cocktail trial in 2008 ( 6 cycles) and Ixempra/Carboplatin cocktail trial in 2010 ( 8 cycles)  and now this one for as long as my body can take it. 

     I am also on a monthly shot of XGEVA for a bone met at butt/hip and I get the Neulasta for the low white blood counts.  Wow -- that's seems like a lot when I actually write it down. 

    All in all I am doing ok.  I have been taking Claritin before/after the Neulasta shot to help with the side effects ( sharp pains in my back) and  XGEVA seemed to cause some weird jaw pain. (Osteonecrosis).  

    This chemo cocktail is screwing with my platelets and twice I was not able to get this lovely cocktail because of the low platelets.  I was actually a little pissed off that the chemo side effects was screwing up my chemo calendar schedule -- go figure!! 

    My veins are starting to see the effects of 3 rounds of chemo -- so I have to start looking at port options. I will fight till the end cause  I really  dont want to go under to have that port put in .

    Anyways my oncologist said that he can already feel a difference in the tumors that were in my neck and armpit. I am scheduled to complete one more cycle which is really four more dosages before my next PetScan in mid June. 

    I actually feel ok most of the time, slight queasy stomach and slight fatigue, but nothing like my 1st round of chemo in 2008. I actually took a Zumba class last week -- I surprised myself. If I did not have ths damn back pain today -- I would take Zumba again today, but I will not push it.  I have almost 10 days off - no treatment - so I will have time to get some cardio exercise in then.

    Sending prayers to all my sisters in this struggle.  I take the good days with the bad days.

    Remember to live LIFE to the fullest while you can before you know another year may have passed you by!

    3 years ago when I was 1st diagnosed -- I did not think I would have done as much as I have done in the last 3 years. ( St Thomas VI, St John VI, Paradise Island-  Bahamas, Mediterranean Cruise, Las Vegas, Skiing in MD and PA, New York City, NC to see my youngest graduate from College, saw my oldest get married, I actually saw my 1st grandson being born, took swim lessons with my granddaughter ) - I could go on and on  but I am too blessed to be stressed with this mess they call cancer..   keep living!!!!!

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

    Tek, this is my second round of chemo, but not from mets, I got a new primary in the opposite breast. I am doing chemo first, ac and then taxol/carbo. I did ac and taxol the first time around, but my doc said I hadn't had my lifetime limit of ac and he seemed to think it worked the first time since I was cancer free for 8 years (stage 2b triple neg). This time is different though, it is in my internal mammary node, but not auxillary (at least by pet/ct and mri results.)

    Dellmonica, how did you get on the parp trial? I need to ask my doc, as I am brca+ and I have heard many good results. I am glad you are feeling good!

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

    Spark, how are you? How is your hearing doing? Are you still on the trial?

  • dellmonica
    dellmonica Member Posts: 74
    edited May 2011

    @bkj66 -- First I had to find a place that was doing the PARP trial.  Several places stopped the PARP trial for people that were NEWLY diagnosed, but for people like me that have had the disease for a while -- they are continuing those trials. University of Maryland MEdcial Center temporiairly stopped their trial and I believe Alliance Oncology is one of the few places in my area that is doing the trial.  I did not do anything to get on the trial -- Everyone eventually gets the PARP in this trial.   They told me in the beginning that I would probably get the the Parp by my 2nd or 3rd cycle.  I got it on my 2nd cycle.

    I will find out the exact name of this trial and then you can find out if it is in your area. you can also check the site below for various PARP trials.  There are several different trials for PARP.

    https://www.breastcancertrials.org/bct_nation/home.seam

    https://www.breastcancertrials.org/bct_nation/browse_trials.seam?groupedByProximity=1&cid=60

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

    Thank you for the information! I don't want to take a chemo that might take me out of a parp trial.

  • spark
    spark Member Posts: 130
    edited June 2011
    Hey everyone, sorry I have been so out of it. I was going through it for sure.

    Had my 2nd round on Wed, May 11th. Was pretty wiped out, but assumed I would feel better sooner since they had reduced my dose (bc of the hearing loss).  A full week later, on Wed, the 18th, I was feeling worse not better. I was really nauseous, and that morning, I lay on my bathroom floor, just crying. I couldn't eat, I couldn't really move. My mom was there by that evening, and mostly I just slept. Then on Thursday, I woke up and my mom got me to eat a little bit of rice, then I laid back down for a little bit. When I got up, I felt worse instead of better. Then I just stared vomiting. Like crazy, like in the movies vomiting. And I started crying, I couldn't stop. I called my doctor and she said to go to the Emergency Room asap. My mom was panicked. I barely remember being in there, they had me very drugged up. And they couldn't get a strong vein. At some point, she literally stabbed me in my hand and I screamed, crying. My mom started crying too. It was awful... so painful... 3 tries later, I was hooked up. Finally, I started to feel better after IV fluids plus steroids/anti-nausea meds/ pain meds...

    After that last round, I felt certain I was done w chemo. Was so sick, being in the ED, ack, all of it. I had a phone appt with my oncologist the following week and she agreed that the cisplatin was having high toxicity effects on me. I asked her if she really thought that 1 or 2 more rounds would really make that much of a difference. and she answered: "I don't know. No one knows that answer, but I would say do ONE more round, if your body is strong enough to take it." The trial oncologist of course wants me to complete all 4 rounds. He said that research shows that people who have residual disease after neoadjuvent chemo or who do not have a complete response (this means there is still cancer after chemo, and that is me. I had 8 rounds of AC/T, and when they went in at surgery, there was still significant cancer in 4 out of the 5 lymph nodes they removed) these people's cancers tend to return... hence why my oncologist found this study for me. There are no guarantees here. This clinical trial is completely new, no one has studied the effects of doing the parp after treatment is completed and there is no current evidence of cancer in the body. This is the idea of an "insurance policy". I wish I had more concrete answers. I do know I am done after this round. I just can't do anymore. But I am moving forward with this.. After being off work for 2 weeks, in 2 separate conversations, I heard about 2 people dying from cancer in just the last couple weeks. I have to admit, it really hit me. am really dealing with life and death here. Sooooooooo. I decided to trust the process. I will do as much as I can do. so I will try for ONE more round.

    I am here now, at the University of Colorado Cancer Center for round 3. I think the person who came up with: "what doesn't kill you, will make you stronger" must have gone through chemo.

    my onc told me my hair will start "shedding" in this week or so, that it tends to do that with cisplatin after the 2nd dose. She told me that my hair is stronger than before bc this batch has already been exposed to chemo so it is harder to fall out. But I noticed that my hair is starting to fall out in the shower. And my eyelashes have been falling out...

    This is hard for to live this way, on this emotional roller coaster of being "sick", then planning on living (meaning working out, work projects, planning things, etc), then living sick life (planning chemo, chemo care, not knowing how i will feel) again. Its all a nightmare.

    In June it will be a full year of my life as cancer. I was diagnosed June 25th and my life is now all about death. Sigh. So I pray. I pray that this is my absolute last round of chemo. Ever. I pray for health. and future. and traveling, and playing, and really really simple things.

  • spark
    spark Member Posts: 130
    edited June 2011

    Suze35: which arm of the trial did you get into? How are you doing?

    Nannababy: what round are you on now? any more hair loss?

    helenalda1: if you read my above post you will see what my onc said about why they worry about it coming back. but it is also bc of the TN status... 

    dellmonica: wow!! you have done and been to alot in the last couple of years!! i want to do that too.. i definitely realize i have not travelled or done enough.. 

    bkj66: my onc found this trial for me, but you can look online at www.clinicaltrials.gov . the one i am in is run by hoosier pharm and they have multiple sites. i look up parp triple negative in the search part. maybe you qualify to be in the one i am in!! 

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