starting carbo/gemzar/avastin next week ugh

scatsm

Saw my gyn/onc today and had my recurrence confirmed. For one wonderful fleeting moment, it looked like I could start the Clovis 2 Parp trial that just started at Siteman Center this week......until the fact that I had had breast cancer within 3 years disqualified me from this and all other parp trials...I had been warned by Alexandra that this could be the case, so I wasn't too surprised, just very disappointed and sad. So. starting chemo on the 9th...6 rounds...good news is no hair loss, other good news is I have a good chance of responding well as per my doc., other good news is no lymph node or distant organ involvement. Bad news is the usual disruption of my life for 5 months of misery. But, hey, if it gets me back to NED, it will be worth it.

If it doesn"t....well, best not go there.

Has anyone been on this combo for a recurrence? Apparently day 1 will be Gemzar alone, day 8 will be all 3 drugs, day 21 it starts again. I will have to have the dreaded Neulasta shot after each day 8...I can feel the leg pain already.

Any advice, suggestions etc would be appreciated.

Susan

 

lovesanimals

Dear Susan

I'll be rooting for you from the sidelines and praying that the chemo cocktail kicks your cancer's butt to the curb.  It sounds like this chemo combo will do just that!

Hugs,

Kelly 

poopergirl14052

lovesanimals said:

Dear Susan

I'll be rooting for you from the sidelines and praying that the chemo cocktail kicks your cancer's butt to the curb.  It sounds like this chemo combo will do just that!

Hugs,

Kelly 

Chemo

i have been on Carbo ...not the other two mentioned ..but from what I hear..this combo will get to remission fast. Sorry you have to have this again..kill the beast.Stay strong..Val 

wholfmeister

Be positive!

I've been on Gemzar/carbo. Since November.  No avistan.  The first week, I get both; the next week just Gemzar.  I started out two weeks on, one week off, but only did that twice before my blood counts wouldn't recover quickly enough.  So we switched to two weeks on, two weeks off.  Going well.  Very easy to tolerate.  I will warn you: it can burn like a hot poker going in.  If possible, use as large a vein as practical (no hands, please) and get a heat pack over the insertion site even before the drug starts flowing.  Gemzar is given at a quick rate, but even slowing the rate a little bit decreases the burning.  One nice thing...it is over in 30 minutes!  As far as side effects, just the usual fatigue.  I am pretty good at managing the constipation and minimal nausea. Really, it has been very easy to tolerate.  And I am hoping you will find it the same.

I have never had neulasta.  Will you be taking that because of something in your past history?

In the interest of total honesty, this regime knocked my CA 125 down quickly from 160's to 25, but the number has been on a slow, steady rise to now 64.  I will have a CT scan next month and meet with gyro-onc for a new plan.  But I have never truly been in remission...you have! And I am pretty sure this regime will put you there again!

Think positive! 

Alexandra

Knock 'em dead, Susan!

Sorry about the trial. It looks like your oncologist decided to go at the recurrence with all guns blazing and sooner rather than later. It's a good thing that Taxol is not in the mix.

I sincerely hope that 5 months of chemo will go by fast and don't cause you too much inconvenience. You have an excellent chance of another long remission.

Try not to let your mind go to scary places, you have too much to live for.

We are all here for you dear friend.

Hugs,

Alexandra

scatsm

Thanks for the comments

I feel strangely calm. Maybe it's the calm before the storm or maybe I am just resigned to my fate....we'll see. I know I have all your support and well wishes and that really helps.

Merrily, I have a port...do you think I will still feel uncomfortable with the drugs going in? I am assuming that you take Miralax regularly? Any other suggestions? do you think I can continue to work part time?

My gyn/onc gives Neulasta after every platinum treatment to boost white blood cell count. It hurts like hell for 48 hours with leg and other muscle pain, but it does help. It has to be injected 24 hours after the treatment and someone on this board reported that she gave herself the injection at home which would save me another trip to the cancer center. If my insurance will cover, I will do that.

Alexandra, I was so close to getting that parp drug.... Had a long talk with my oncologist about when to treat etc. I could have waited but he felt strongly that all that would happen is that my ca125 would rise quickly and the disease would spread. I can only hope I made the right decision. It makes me so frustrated that I was excluded from the trial which works best on BRCA mutants because I had a BRCA mutant second cancer. He said he argued this with the Clovis people but since it is a phase 2 trial, they wouldn't be open to it. He thinks that down the road, new trials will open for people like me. All I can say is I better not be reading about it from the grave, or urn.

Susan

wholfmeister

scatsm said:

Thanks for the comments

I feel strangely calm. Maybe it's the calm before the storm or maybe I am just resigned to my fate....we'll see. I know I have all your support and well wishes and that really helps.

Merrily, I have a port...do you think I will still feel uncomfortable with the drugs going in? I am assuming that you take Miralax regularly? Any other suggestions? do you think I can continue to work part time?

My gyn/onc gives Neulasta after every platinum treatment to boost white blood cell count. It hurts like hell for 48 hours with leg and other muscle pain, but it does help. It has to be injected 24 hours after the treatment and someone on this board reported that she gave herself the injection at home which would save me another trip to the cancer center. If my insurance will cover, I will do that.

Alexandra, I was so close to getting that parp drug.... Had a long talk with my oncologist about when to treat etc. I could have waited but he felt strongly that all that would happen is that my ca125 would rise quickly and the disease would spread. I can only hope I made the right decision. It makes me so frustrated that I was excluded from the trial which works best on BRCA mutants because I had a BRCA mutant second cancer. He said he argued this with the Clovis people but since it is a phase 2 trial, they wouldn't be open to it. He thinks that down the road, new trials will open for people like me. All I can say is I better not be reading about it from the grave, or urn.

Susan

My experience

I don't know why I don't have a port.  We really have never discussed it.  I would assume you will have much less burning sensation, since the port delivers into a much larger vein.  And I guess not everyone reacts that way, but I just wanted to give you a heads up.  Yes, Miralax is my routine from a couple days before until a week later. 

Honestly, since this whole thing started two years ago, I have only missed work for my appointments (and six weeks for surgery, of course!).  I have taken a rare day for mental health....ssshhh!  My job is not physical, but it is mentally taxing.  A lot of critical thinking, technical writing, speaking intelligently before groups of people.  Chemo brain makes all of that very challenging the week after chemo.  I show up at the office, but I am not saying I am always working Effectively! 

My blood counts have only failed to recover quickly one time, so I guess that is why I haven't done the neulasta.  My doc watches my labs closely.  Giving yourself an injection isn't hard, once you get over the thought of it.  Even kids can learn to do it.  Hope your insurance will allow for it...a big time saver!

This carbo-Gemzar routine is the easiest regime to tolerate.  It really is a non-event for me.  I know everyone is different, and I've been very lucky.  But you shouldn't be afraid of it, at all.  Your first round treatment was probably much harsher to withstand.

Praying it is easy on you and kills the cancer dead, dead, dead.

Alexandra

scatsm said:

Thanks for the comments

I feel strangely calm. Maybe it's the calm before the storm or maybe I am just resigned to my fate....we'll see. I know I have all your support and well wishes and that really helps.

Merrily, I have a port...do you think I will still feel uncomfortable with the drugs going in? I am assuming that you take Miralax regularly? Any other suggestions? do you think I can continue to work part time?

My gyn/onc gives Neulasta after every platinum treatment to boost white blood cell count. It hurts like hell for 48 hours with leg and other muscle pain, but it does help. It has to be injected 24 hours after the treatment and someone on this board reported that she gave herself the injection at home which would save me another trip to the cancer center. If my insurance will cover, I will do that.

Alexandra, I was so close to getting that parp drug.... Had a long talk with my oncologist about when to treat etc. I could have waited but he felt strongly that all that would happen is that my ca125 would rise quickly and the disease would spread. I can only hope I made the right decision. It makes me so frustrated that I was excluded from the trial which works best on BRCA mutants because I had a BRCA mutant second cancer. He said he argued this with the Clovis people but since it is a phase 2 trial, they wouldn't be open to it. He thinks that down the road, new trials will open for people like me. All I can say is I better not be reading about it from the grave, or urn.

Susan

PARP trials for maintenance

Susan, once you're finished with chemo, you could still enrol in PARP inhibitors maintenance trials. There are a few of those going on and they are phase 3 (double-blind). The goal of those are to prolong progression-free interval after chemo, especially in BRCA+ mutants. There could be others soon. If I were you, I would get on the waiting list now.

AstraZeneca - Olaparib - trial NCT01874353 (50 drug /50 placebo) - no exclusion for prior cancers.

Tesaro - Niraparib - trial NCT01847274 (66 drug / 33 placebo) - exclusion <2 years breast cancer, by the time you're finished chemo 

Clovis - Rucaparib - trial NCT01968213 (50 drug /50 placebo) - exclusion <5 year solid tumors, I'm not sure if that includes breast cancer (?)

 

There is a very promising anti-CD47 antibody trial coming up later this year http://stemcell.stanford.edu/CD47/

 

Screw the urn. We fabulous BRCA girls ain't going nowhere.

 

seatown

scatsm said:

Thanks for the comments

I feel strangely calm. Maybe it's the calm before the storm or maybe I am just resigned to my fate....we'll see. I know I have all your support and well wishes and that really helps.

Merrily, I have a port...do you think I will still feel uncomfortable with the drugs going in? I am assuming that you take Miralax regularly? Any other suggestions? do you think I can continue to work part time?

My gyn/onc gives Neulasta after every platinum treatment to boost white blood cell count. It hurts like hell for 48 hours with leg and other muscle pain, but it does help. It has to be injected 24 hours after the treatment and someone on this board reported that she gave herself the injection at home which would save me another trip to the cancer center. If my insurance will cover, I will do that.

Alexandra, I was so close to getting that parp drug.... Had a long talk with my oncologist about when to treat etc. I could have waited but he felt strongly that all that would happen is that my ca125 would rise quickly and the disease would spread. I can only hope I made the right decision. It makes me so frustrated that I was excluded from the trial which works best on BRCA mutants because I had a BRCA mutant second cancer. He said he argued this with the Clovis people but since it is a phase 2 trial, they wouldn't be open to it. He thinks that down the road, new trials will open for people like me. All I can say is I better not be reading about it from the grave, or urn.

Susan

Avastin was quite E-Z for me

I was on Avastin much of 2013--March to December. Also had Carbo/Taxol March to May. Once I was on the Avastin only, I had almost no side effects except a build-up of sinus congestion--very annoying, only very slowly abating though I've been off the Avastin for months now. I take Zyrtec (it replaced Claritin), plus I use one prescribed nasal spray & another OTC one. Good luck with your new regimen!

Carole

www.CaringBridge.org/visit/CaroleSeaton

 

scatsm

thank you Merrily and Alexandra!

Merrily,

I can only hope i do as well as you. One more question: you had mentioned in another post that you still wear wigs...I lost my hair from the taxol but it did grow back. I was told that there is no hair loss with the carbo/gemzar/avastin regime... Is that true (I want to be prepared)?

Alexandra,

As always, thanks for your excellent suggestions. I will keep on top of these Parp trials and any other that may start...I believe Parp inhibitors have the best chance of keeping us BRCA mutants out of the urn! When will you hear about yours??

All the best,

Susan

 

scatsm

scatsm said:

thank you Merrily and Alexandra!

Merrily,

I can only hope i do as well as you. One more question: you had mentioned in another post that you still wear wigs...I lost my hair from the taxol but it did grow back. I was told that there is no hair loss with the carbo/gemzar/avastin regime... Is that true (I want to be prepared)?

Alexandra,

As always, thanks for your excellent suggestions. I will keep on top of these Parp trials and any other that may start...I believe Parp inhibitors have the best chance of keeping us BRCA mutants out of the urn! When will you hear about yours??

All the best,

Susan

 

and thanks also to

lovesanimals, Val and Carole for your good wishes...I appreciate you all so much.

 

Cafewoman53

Susan

I was on the same combo of drugs for a reoccurrence and it worked very well brought my numbers right down, unfortunately after the chemo was over the numbers rose again.

I am now on Carbo/ gemzar again of another reoccurrence but not Avastin this time as I had blood pressure issues.  Good Luck with these drugs !

Colleen

wholfmeister

scatsm said:

thank you Merrily and Alexandra!

Merrily,

I can only hope i do as well as you. One more question: you had mentioned in another post that you still wear wigs...I lost my hair from the taxol but it did grow back. I was told that there is no hair loss with the carbo/gemzar/avastin regime... Is that true (I want to be prepared)?

Alexandra,

As always, thanks for your excellent suggestions. I will keep on top of these Parp trials and any other that may start...I believe Parp inhibitors have the best chance of keeping us BRCA mutants out of the urn! When will you hear about yours??

All the best,

Susan

 

Hair!

Yes, you will likely keep your hair!

i had lost all mine with the previous chemos.  Eyebrows and lashes came back quickly, as did the hair on my head.  So far, it is hideous.  And I mean ugly hideous!  Sparse, patchy, very coarse, frizzy.  Frizzy, not curly.  It is really bad!  I know I just have to give it time to grow, but I am way too vain to go out in public  with that ugliness when I have a fabulous wig that makes me feel pretty!

I am fairly confident that you will keep your hair for this treatment! Yeah!