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

Spark, that sounds horrible what you had to go through. I do hope the 3rd one is easier for you, they better give you some better pre meds! Has your hearing returned to normal? Sending hugs from seattle.

Wow! SPARK! Sounds like you went thru hell!  I know Cisplatin really made me feel sick! I did 4 rounds and that's it! I thought I had to do 6, but nope! YAY!

Cisplatin would make me feel nauseous for a whole week.  And it seemed like each round got worse. I hope you are put on some good meds for next round!  I was taking Emend, Zofran, Stemetil AND Decadron! And I still felt nausated sometimes!

I never lost any hair None that I can notice anyways...

if I take taxol/carbo befroe surgery and there is residual disease after surgery, can I do cisplatin? I guess I need to ask my doc...

spark - thanks for your well wishes.  My case has been constantly changing, it does suck!  And I still have one more variable left to go, the CT scan.  But at least I've had time to roll with the punches, as much as one can in this situation.  I hope all goes well with your Parp infustions!

bkj66 - You can do Cisplatin as it is slightly different from Carboplatin (an earlier platin).  However, my doctor explained to me that in my case - progression while on Taxol/Carbo, it is likely Cisplatin would be ineffective as clearly the platin drugs didn't work the first time.  I'm not sure if that is the case with you as you did not actually have progression, so definitely check with your doctor.  And if I progress to Stage IV, Cisplatin would not be off the table, just in case...

dlcw - I am glad to hear from you, I know how hard the news of your pathology hit you .  It sounds like your doctors have a good plan, I'm just sorry it means more chemo for you.  I am going to do both rads and chemo.  My RO has added the new node to my fields and will be hitting it hard after I am done with the other fields, and at the same time, I am starting Xeloda with Avastin on June 20th, and adding in Ixempra on June 27th.  At least, that is the plan as long as my CT scan is clear. 

Marijana - we have similar stats, although I didn't have IBC. I do still have one supraclavicular node that we are treating. My post surgery stage was very close to yours. I am doing more chemo in a few weeks. I would have liked to put off rads for more chemo, but we ultimately decided to do it afterwards. On a positive note, it has been 5 months since I've had any effective chemo, and I'm still clear beyond local disease, and there was some chemo effect in my tumors and nodes. But my doctor doesn't want me waiting any longer.



Truthfully, there is no clinical evidence that more chemo helps. But there are many clinical studies that are looking at this very issue, lots of disease after surgery. I would definitely recommend a second opinion, and investigate clinical trials.

I wish you strength with the chemo you are going to get. Hope for you it's not very heavy and the cancer never comes back again.  

Thank you Marijana.  Did your doctor offer to give you Cisplatin?  I know that is one of the drugs they are using adjuvantly if you still have disease left.  I personally did not respond to the platin family of drugs, but it is showing success in other cases.

Something you can do for yourself that has shown to have an impact on recurrence is diet and exercise.  A very low-fat diet (20% of your caloric intake) along with 30-60 minutes of aerobic exercise 5 days/week has shown to reduce recurrance in TNs up to 42%.  The advantage was so significant they are doing larger clinical studies on it.  The theory is that TN is related to blood sugar fluctuations, and the diet/exercise help control that.

Also, be sure to take your Vitamin D3!

I know what you mean about fighting for your family - I have three kids myself, and will not stop trying.  I have been lucky so far, but I am also hoping this next round of chemo does the trick and keeps me NED for a long time.

Best wishes to you!

Suze35

My hospital participating in that study, but did not want to give my further treatment, first I have distant metastases . In Amsterdam another woman, who after surgery still had N3, received Cisplatin. That exercise, diet and vitamin D3 can help, I did not know. Thank you. In the USA, the treatment slightly different than in the Netherlands, here they are (too) carefully.

My oldest son is almost ten, about as old as yours. My daughter is six and my youngest is almost 3. Busy but fun.

Nice of you, that trail.

I am starting the trial in a couple of weeks. The xeloda did not stop anything.. but I feel good!!! I sure hope I do not get too sick on the PARP/Gem/Carboplatin stuff!!! I am praying for all you guys and I hope the PARP will work for all of us!!!!

Please PM if you have any questions about the doc or anything.. I will be more than glad to let you know

Spark - how are you feeling on your chemo these days? I hope you are doing okay!



I looked high and low for a PARP trial, but I'm in such an odd position pathologically. I'm not metastatic (yay!), and kinda sorta recurrent, but not really. If I do become metastatic, then I'll definitely try for a PARP.



Re: the stats, my doctor is a big believer in diet and exercise for TNs. I do well maybe 75% of the time on both, it can't hurt! The way I see it, if I have a 60% chance at recurrence (what my doctor reluctantly told me), then I can possibly cut that to 35-40% if I diet/exercise. No guarantees, but worth the shot! I also do a few, not too crazy things - two glasses of green tea a day, 4 ounces of blueberries a day, Melatonin every night, and Vitamin D.



I found another clinical trial that may interest you - I'm going to ask my doctor about it. It is a vaccine trial for TNs at high risk for mets after chemo/surgery.



http://clinicaltrials.gov/ct2/show/NCT00986609?term=Breast+cancer&recr=Open&no_unk=Y&rank=635



I would have to travel, but it might be worth it.

I am wondering if anyone on the board has a PassPort( in their arm) vs a Port (in their chest).

I am researching getting a PassPort ( not a PICC line that hangs out) in my arm and would like any feedback,pros.cons.

well well well  -- My PET CT Scans came back clear -- I do not think it has sunk in my head yet!! 

I have been fighting this battle since late 2007/early 2008 and I never had a clear PET CT Scan!!  There was a lot of celebration ( eating and wine drinking)  this weekend . 

The PARP trial wants me to continue for 2 month for good measure -- so I will.  I  am scheduled to get the PORT a week from today.  I will go ahead and get it in my upper chest wall and then will make the next 2 months easier for me and the nurses. I will then have a follow-up PET CT Scan for good measure again! 

What is this study about the PARP!!! does work or not??? I am hoping it does. My onc said they have no info about it. .. the trial is continuing for Mast. TNBC

@bkj66: mets were in arm pit area, hip bone, small ones in lungs and clavicale and chest.

@Towny:The Parp trial has NOT shown to be effective for newly diagnosed BC patients, but it has shown to be effective in those with mets.  I believe they are no longer running the trial for newly diagnosed BC patients and only running it for those with recurrences and mets.

My trial is thru US ONCOLOGY.  I am sure you can google it and get the details. If not, let me know and I can send you my waiver form that contains the details.