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

dlcw

dellmonica - great news!  So happy to hear your result. 

The Phase III study on the PARP looked like in the metastatic setting it was more effective in patients that had already had 2 or 3 prior regimens.  But, there's also still a neoadjuvant study in progress for early stage, chemo naive patients.  It's at Stanford and they have increased the total enrollment to a goal of 95 patients.  It was originally 40, then 80 or so, now 95.  They are definitely seeing response in early stage patients - my response was not great (tumor down by 60% and several nodes cleared) but it turns out that I had a heterogeneous tumor with some ER+ so wasn't a true TN.  I've also met several other women that got a complete response or had minimal residual disease at surgery  The trial is supposed to open up at other locations so will be available to newly diagnosed TN's that aren't in Northern California.  

Spark - thanks for the info on your trial.  I just started 12-weekly Taxol and will follow up with AC as insurance also.  Didn't feel like the response to the trial drugs was good enough and wanted more than radiation and taxomifen.  

dellmonica - enjoy your good news and the celebration.  Towny - hoping you win the lottery on the next draw!

dlcw

Towny

Does anyone know how long the wait usually is?? I just called my doc office and told them I want to start on some kind of chemo regardless. They said if I started on something I would have wait 10 days to clear my system of the drugs before we started the trial??? Does anyone have any other experience. Couldnt I start Gem and Carbo than add the Parp??? GEez  15 days no chemo and I feel stuff getting larger and it is getting hard to breath sometimes. I do not know if it anxiety or if it is something else.

I am a little scared

dellmonica

My study worked differently. I was on the Gem/Carb and then I had to wait for them to pull my name in order to ADD the Parp. I was on the GEM/Carp for one cycle and then the PARP was added after that because my name came up in the lottery. I don't understand why they just don't start you on the Gem/Carb without the Parp for now. Anyways. I am saying a prayer that you WIN the parp lottery soon.

Towny

OUR PRAYERS ARE ANSWERED!! PRAISE GOD I WILL START ON TUES!!!

I SAID THE SAME THING... GET ME STARTED ON SOMETHING!! THEY JUST CALLED AND TOLD ME...

I HAVE TO GO TO EAST SEATUCKET NY ... 2 HOURS AWAY!! I LIVE ON SHELTER ISLAND ...ANYONE NEAR E SEAUCKET OUT THERE???

THANKS FOR ALL YOUR SUPPORT!!!

spark

Omg, Towny, I am so glad to hear your news. I felt so sad to read your post about being scared and feeling like stuff was getting larger... it really was breaking my heart so to hear that you will start and got into the lottery is great, great news. I wish I lived out there!! I would help take care of you!! But am out here in San Francisco. I had to travel/fly to Colorado for my trial, and now I have been transferred to UCLA so that is closer and I have sisters that live there so it will be easier.

I start the 24 weekly parp infusions this week. 6 months feels like forever. am going to try it w/o getting a port bc the whole idea of something being under my skin like that totally skeeves me out. There is no other trial like the one I am doing, so they don't know what the side effects will be like. But I am hoping to be able to work through this whole gig. 

Here's wishing and hoping and praying that PARP is the miracle drug we all want and need it to be... 

Towny

Dear Spark

thanks for the good thoughts.. I have a great husband and live in a small town that everyone is helping...I am still at work and trying to maintain all of the usual stuff of life. I am having some breathing problem... not sure if it anxiety or what?? I will see doc tomorrow and start trial as well. I do not cough when I am sleeping and it comes and goes so I think I am just freaking out!!!

I am surprised you did not go to Stanford for the PARP.. I think they have been doing stuff with for a few years.. Where did you go in Colorado.? I have some family living in Colo Springs... Thanks for the good wishes same to you and lets compare notes!!!!

God Bless

Towny

Starte trial today... Feeling good!!! Glad to have the poison in my blood to kill the potatoes I felft growing in there!!!

Looking forward to some positive stuff!!!!

Thanks for all your support

Dense Bill A77774 in the NY assembly may be still alive call your assembly people!!!

Towny

Hey how long does it take for this stuff to start working.. I am now on oxygen 24/7... hopefully for not tooo long...

I need some advise!!! how long does it take for the Parp to kick in and kill this shit!!!

spark

Hi Towny,

I am so sorry that you are on oxygen 24/7 like that! Does that mean you are in the hospital? How miserable. You know, from how I understand it, the PARP does not actually kill anything.. the chemo kills the cancer, then the PARP inhibitor prevents it from growing back. So it is not an immediate, noticable thing. The chemo is the thing that will kill your shit! then the PARP inhibitor keeps it dead. Check w your onc for a better explanation.. 

Towny

Dear Spark

just so long something kills it I do not care which one is which.. I am at home with the oxygen.. hooked up to a 50 ft cord.. I went to my office for about 1 hour without it and came back and got back on it. I just do not want my body to stop doing stuff on its own. I also know I need the oxygen.. Tues I will get all my reports written and all .. I am going to read them myself and really get a better pic.. Everyone is expecting that the parp is the silver bullet!! Please pray that it is!!!

Other than that absolutely no side efftect.. no sickness nothing.. so this just has to be temporary!!! Please pray... thanks

bak94

I am praying for you towny, that you get great results with your treatment. Also, that the oxygen is only a temporary thing to get you through this rough patch. I am so happy that you have no side effects and I hope that continues.

cathmoons

Spark**Hope you don't mind me butting in... I have been where you are. I told my doctor, never again after my first chemo in 1996. I am 15 years out with triple negative, a +9cm tumor, and 11 out of 18 lymph nodes positive. I did the stem cell, 96 hour chemo after 7 treatments 3 weeks apart. In other words, I puked for over a year straight. But since then I have seen my children make their First Communions and Confirmations, 5 high school graduations, the birth of my grand daughter, 1 college graduation and numerous other, but no less significant acts of love and pride. Hang in there. My memories of my times spent puking are still there just below the surface but I am ready to face the same thing again... diagnosed again, same 'strain' of bc. It's not as easy as the first time, because I know what I am in for but I am going to join you, I will puke, I will cry, I will sleep (if I can) but I will do whatever it takes to spend more time with my husband and children. Please, hang in there, it does get better.

dellmonica

@Cathmoon: What is 96 hour chemo? 

 @ towny:...Last year my chemo cocketail was Ixempra and Carboplatin and it was working for about 6 month per the PETSCAN and then it stopped working and the diseased had progressed.  Scared the shit out of me.....

Then I started the  Gemstar and Carboplatin plus Parp trial and I noticed  improvement after the 1st cycle ( 2 weeks).  Prior to starting this round of chemo I had a bad cough for several months and I could feel the tumors in my neck/clavical area.  The cough went away after less than a month and the tumors shrunk after the 1st cycle.  

Please stay positive and try not to stress -- I honestly believe worrying and stressng makes your body weaker and prone to letting the cancer win!!

spark

cathmoons: thank you for a perspective check... and your inspiring words... yes, i was curious as to what "96 hour chemo" was, also the stem cell and how that applies to breast cancer treatment?? so this is your first recurrence after 15 years? what treatment will you do now?

dellmonica: how are you feeling now? 

towny: am sure you explored this, but could all that breathing issue be more anxiety than anything else? what do the docs say about all that?

bkj66: what is happening in your world?

today I had my 2nd of 24 weekly parp infusions. so far the side effects are minimal which i am grateful for, especially compared to chemo. thursday, i get a port placed in my chest which i am completely dreading. am scared of the surgery and freaked out by having something foreign in my body like that, and how it will look, etc and pain, etc. then i get a mammogram and pet scan all on the same day! not intentional, just weird scheduling...  this will be my first mammogram and pet scan since treatment.. 

Towny

Dear Spark

Anxiety??? What Anxiety?? Hell yes some of it is anxiety.. some of it plural infusion they did a CT scan and yes I have fluid..I am only on oxygen #2 which is mild. I am at work on no oxygen but I do have a can here if I need it..XXannax helps  alot too. No side effects from the chemo.. so far so good with that. I have to go and get shots to get my wbc up .. does not surprise me though..I have really good insurance so the oxygen probably is a bit of an over kill... but I am using it and it does help.

The port thing is NO big deal.. you will forget about after a while..you can do anything with it and it makes life much easier than getting poked.. Get some Lanacaine from the doc..put it on an hour before they access your port put plastic wrap over the area and when the stick you cannot feel a thing. It helps a lot!!!!!!!

dellmonica

All:  I am doing well -- The port surgery is healing up well.  My boobs are pulling on the port incision so I sleep with a bra and wear my bra much tighter then normal during the day to hold them up high!!  LOL!! My daughter says they are up in my chin!! smile.... 

I start chemo again on Friday for about 2 months and then another PET CT SCAN. I have my volunteers lined up to go with me for the next 12 sessions.  I love my support system!!  I pray that everyone has a lot of support like me.  I do not need anyone to go with me as I am able to drive there and back without issues, but I like having someone with me --- it just makes me feel better. PLUS I saw a woman have a very BAD reaction to chemo once in the center.  The nurses were amazing and responding so quickly and she was ok within seconds!!! but thank GOD her  caregiver/husband was there with her - to drive her home cause I would not have been able to drive home after that!!

Anyways  I continue my prayers for everyone!!

Towny

My counts are low and they are giving me 4 shots one each day of leukina!!! It is killing me!!!

Does anyone have any suggestions of how to make not hurt so much... neulasta was nothing compared to this.  Geez the chemo is nothing compared to this!!! I am taking emends for side effects and I have NONE!!! Sure a little tired... but now these shots about pushed me over the edge!!! The pain was out of this world.. In bed for 24 hours!! Come on!!! I cant tell my blood count is low... so keep it low!!! Please give me any pointers...

I think these guys are hooked up with certian drug company so they use certian drugs, I asked them for nuelasta and they said this is bettter!!! for who??? And also I had to beg for amends becasue they wanted to give me something else.. I think the drug people are up to something...

I am a skeptic for sure... I am at work trying to maintain some kind of normal .. for only a few hours with my oxygen take.. Geez I loook like one of those smokers on t.v.... I never smoked!!!

If anyone has any suggestions please share!!! thanks .. Dell.. got your facebook.. You are looking good.....keep it up!!!

bak94

Towny, can they prescribe percoset for you? I had pain with neupogen, but not neulasta but had to get both because the neulasta didn't bring my counts up enough. I had some percoset left over and took it and it took all the pain away and the pain did not come back until the next shot.

Spark, I am doing fine, thanks for asking. I have one ac left and then on to abraxane/carbo and possibly avastin, as doc mentioned it once. He is also wanting me to take zometa. Not sure when my next scan is but last scan showed the breast tumor had shrunk to virtually nothing and the nodes shrank by over half, that was after 3 ac so I hope the nodes have shrank more when I am done with the 6 ac.

Towny

Bkj the shots got better thank God... Good luck with everything disappearing... great news!!!

Praying for all of us to get the same news... sooner than later!!

spark

Hey All,

Guess what?!?!? I just had a PET and it was ALL CLEAR!!! It has been a year since all of this started for me. I was diagnosed in June of 2010, and started chemo in July. I feel like this has been the LONGEST year ever. I feel like I am starting my life over. I leave for a yoga/horseback riding retreat tomorrow! So you guys won't hear from me for a couple of weeks! I will be too busy living!!

Everyone keeps asking me, but I will continue with my clinical trial and the weekly parp infusions. I have only done 2 so I still have 22 left. I keep explaining that this trial is meant to prevent it from ever coming back. 

Towny and dellmonica: how long until you felt normal after the port? how painful is the surgery and the recovery?? I get mine on 7/28. How big is the scar??

Towny, when I did AC/T, I started with neupogen, then did neulasta instead. People told me to take claritin and I think that helped some, but some nights I did get really bad pain. I am glad to hear you are feeling better with that. 

bkj66: how have you been tolerating the AC/T?

Towny

I survived the first round of gem/carbo/parp..with the shots of leukine..I am feeling much better. I feel that the lumps are getting softer!! I am still having breathing problems.. So I have not exercised any at all!!! So I hope that will change soon. I am glad to hear all the good things from everyone. I am so happy to have hope and good news on the blog!!!

The port was never a big deal to me... I did it from the get go...by brother who is a cancer survivor said just do it from the beginning because you will eventually want it... getting poked is a pain..It has come in handy due to cellutius stays in the hosptial!!!Hopefully you will not need it for that. But it is easy and no problems for me at all.

This week I am off of everything NO docs NO chemo NO nothing.. I am going to try to relax and enjoy the beautiful summer.... anyone interetested in an oncology camp check out Bravehearts oncology camp...... It is a great group of women who do lots of stuff. It is all in NY..though.. good concept. Have a wonderful week and I am praying all goes well for all of you .. I am praying for you all

slousha

Hi Towny,

I found this about Leukine

"

Leukine^® is indicated for the following uses: (i) following induction chemotherapy in older adult patients with acute myelogenous leukemia (AML) to shorten time to neutrophil recovery; (ii) for mobilization and following transplantation of autologous peripheral blood progenitor cells; (iii) for myeloid reconstitution after autologous or allogeneic bone marrow transplantation (BMT); (iv) for use in bone marrow transplantation failure or engraftment delay.

Important Safety Considerations

• Leukine is contraindicated in patients with excessive leukemic myeloid blasts in bone marrow or peripheral blood (≥10%); in patients with known hypersensitivity to GM-CSF, yeast-derived products, or any component of Leukine; and for concomitant use with chemotherapy and radiotherapy.
• Serious allergic or anaphylactic reactions have been reported with Leukine. If any serious allergic or anaphylactic reactions occur, Leukine therapy should be immediately discontinued and appropriate therapy initiated.
• Liquid solutions containing benzyl alcohol (including liquid Leukine) or lyophilized Leukine reconstituted with Bacteriostatic Water for Injection, USP (0.9% benzyl alcohol) should not be administered to neonates.
• Leukine should be used with caution and monitored in patients with preexisting fluid retention, pulmonary infiltrates, or congestive heart failure, respiratory symptoms or disease; cardiac symptoms or disease; and renal or hepatic dysfunction.
• Edema, capillary leak syndrome, pleural and/or pericardial effusion, sequestration of granulocytes in the pulmonary circulation, and dyspnea have been reported in patients after Leukine administration. Occasional transient supraventricular arrhythmia has been reported during Leukine administration. Leukine has induced the elevation of serum creatinine or bilirubin and hepatic enzymes in some patients. Monitoring of renal and hepatic function in patients with preexisting renal or hepatic dysfunction is recommended at least every other week during Leukine administration.
• Adverse events occurring in >10% of patients receiving Leukine in controlled clinical trials and reported in a higher frequency than placebo were: in AML patients - (fever, skin reactions, metabolic disturbances, nausea, vomiting, weight-loss, edema, anorexia); in Autologous BMT patients - (asthenia, malaise, diarrhea, rash, peripheral edema, urinary tract disorder); and in Allogeneic BMT patients - (abdominal pain, chills, chest pain, diarrhea, nausea, vomiting, hematemesis, dysphagia, GI hemorrhage, pruritus, bone pain, arthralgia, eye hemorrhage, hypertension, tachycardia, bilirubinemia, hyperglycemia, increased creatinine, hypomagnesemia, edema, pharyngitis, epistaxis, dyspnea, insomnia, anxiety, high BUN, and high cholesterol).
• If ANC > 20,000 cells/mm³ or if platelet counts > 500,000/mm³, LEUKINE administration should be interrupted or the dose reduced by half. Twice weekly monitoring of CBC with differential should be performed.
• Leukine therapy should be discontinued if disease progression is detected during treatment.

dellmonica

Spark:  my scar is about 2 inches and then I have 2 smaller scars on my neck of less than a 1/2 inches.  My port is going into my jungular vein.  Its been 2 weeks and nothing feels normal about it!!  My suregery went well and I had no brusiing or anything like that.  I used plenty of ice packs after the surgery to help with the swelling and pain relief.  I did not really need any pain pills.

Friday was the 1st time they used the port for my chemo and it was a very smooth process.  There were not the normal delays trying to find a vein -- so that was a good thing!!   I go back on Monday for the PARP only infusion.  I hope everyone has a great weekend/week!!  PEACE and Blessings to all!!

Towny

Slousha...

thanks for the infor!!!!!! wtf!!! I am going to ask a lot of questions before doing this again..

they told me it was just like nulasta.. I will have to investigate more... geez!!!!

I have plural infusion... are they trying to kill me??? I sometimes do not know who to trust..

thanks and I am doing much better.. so I just do not know what to think....

slousha

Hi Towny,

Additionally I was informed Leukine is cheaper than Newlasta...

Best, best Wishes

Usha

cathmoons

15 years ago the docs were quite nervous about the size of my tumor over 6 centemeters and what to do with 11 out of 18 nodes infected. I was sent to Toronto after 6 treatments of some really toxic stuff, 5-fu, cyclophosomide, cisplatin and another that escapes me. I went to Toronto to have my stem cells extracted and then grown in a lab into a mix of red blood cells, white and platelets. I then had another cocktail that went on for 96 hours in order to wipe out any residual cancer cells floating around. When my blood cells bottomed out, I was put into isolation, then had my stem cells reinfused, a kind of insurance against the high dose 96 hour chemo. It was an experimental procedure at the time but it was necessary for me to have the 'big guns' because of my prognosis. Through clinical trials it was since proven to be no more effective than high dose chemo without the stem cell transplant. I was then put into isolation until my blood began to recover, it took a little over a month. Now I am faced with a new, triple negative again, bc that will require a high dose of taxotare and cyclophosphomide. The lump is much smaller, found by my yearly mammogram, but it is unknown whether the lump is two months old or 12 months old so the docs are concerned again. I went in to begin chemo today but a glitch in my neupogen paperwork prevented them from starting, so I should be able to go on Wednesday. Just 4 treatments and then radiation.

cathmoons

15 years ago the docs were quite nervous about the size of my tumor over 6 centemeters and what to do with 11 out of 18 nodes infected. I was sent to Toronto after 6 treatments of some really toxic stuff, 5-fu, cyclophosomide, cisplatin and another that escapes me. I went to Toronto to have my stem cells extracted and then grown in a lab into a mix of red blood cells, white and platelets. I then had another cocktail that went on for 96 hours in order to wipe out any residual cancer cells floating around. When my blood cells bottomed out, I was put into isolation, then had my stem cells reinfused, a kind of insurance against the high dose 96 hour chemo. It was an experimental procedure at the time but it was necessary for me to have the 'big guns' because of my prognosis. Through clinical trials it was since proven to be no more effective than high dose chemo without the stem cell transplant. I was then put into isolation until my blood began to recover, it took a little over a month. Now I am faced with a new, triple negative again, bc that will require a high dose of taxotare and cyclophosphomide. The lump is much smaller, found by my yearly mammogram, but it is unknown whether the lump is two months old or 12 months old so the docs are concerned again. I went in to begin chemo today but a glitch in my neupogen paperwork prevented them from starting, so I should be able to go on Wednesday. Just 4 treatments and then radiation.

bak94

Oh, cathmoons, I am sorry you are going through this again. This is my second time also, 8 years ago the first time, both triple negative. I think emotionally this second time has been more rough on me, how about you? Are you brca positive by any chance? I am brca1 positive. Did you already have surgery? I am currently doing neoadjuvent chemo.

cathmoons

It's quite a bit harder this time.  I am older, my children know more about whats going on, Biology major daughter... Before I did as I was told, shuffled around and was a good patient, naive and young.  I feel like crap now, and am looking up info about my heart.  My insides feel like a factory floor with gremlins working overtime, twinges, spasms, pain, twists, nausea, like an internal stress factory with disgruntled workers getting ready to strike!  Wondering if it's my heart, have always had an amazing heart.  I haven't been gene tested yet.  Thinking it through slowly and carelfully because of my daughter.  Yes, I ended up having surgery first because of a missed core biopsy, thought it would be prudent to just get it out for good rather than live through the stress of wondering if the lump was missed again.  Lymph nodes are clear, lump is rectangular .8X.6X1.0  But is it 2 months old or 12 months old.  Cat Scan, bone scan yesterday, MRI of breast if something else shows up.  4 treatments of Cyclophosphomide and Taxotare with Neupogen and steroids chasers!

dellmonica

My port is actually working out well, I had PARP treatment on Monday and all went well and quick.  The neulasta shot from Monday kicked in today and my back and chest were killing me with pain although I took the claritin the day before the shot, 10 minutes before the shot  and the day after the shot.  This morning the pain was bad but not TOO bad,  I took an acetamenophin and was stil able to go walking this morning.  Tonight we plan to attend the Serenade in the Park at Centennial with the grandkids!!  Rockercerous concert!!  -- OMG -- what have I signed up for!!

I am so ready for the weekend!!  I am excited for Six Flags on Sunday and the Tearrapin adventure on Sunday.  I have 10 days of no chemo and I try to cram as much in as possible!! Too blessed to be stressed