perjeta with gemzar?

[CoolBreeze]

So, I've already done the taxanes to no avail. My liver lesion is now 4 cm (after liver resection and ablation). My doctor mentioned perjeta with gemzar but today, speaking to the office, the doctor wrote in his notes that it was agreed I would wait for TDM1. I did say I WANTED TDM1 but goodness knows what that is coming out or when I can get it or if it'll even work. I don't have years here.

They said that perjeta was only prescribed with taxotere. I said that I wanted to try it with gemzar if there was a way and they are going to look into it.

Has anybody had it with gemzar? Anybody have it with a different chemo than taxotere? Anybody know how I can convince the oncologists to give this to me?

Should I wait for TDM1? Maybe the end of February it will be available?

My own oncologist has been on medical leave. Thank goodness, he is okay. But, I am dealing with a different guy now, who is kind and gentle and nice but things don't seem to happen with him the way they did with my other oncologist. I hear one thing from him and another from the staff and that isn't because he is wrong, it's just he's probably doing too much taking over all these patients. ARG.

[ElaineM]

I think So Cal Gal is doing it differently. You might want to contact her and see how she did it.
Your blog is great, but I don't have facebook or twitter, so I can't vote for you. Sorry.
All the best. Keep putting one foot in front of the other and do not accept defeat.
Take care.

[CoolBreeze]

Thanks Elaine!

For those wondering, I am in a "Best Blog" contest. Prize is $1000.00! You can vote for me with a facebook or twitter account, every day, here: http://www.healthline.com/health/bes...-blogs-contest

If I win, this will be part of my son's college fun. He is 15, and I won't be there to see him through it. It would be nice if I could give him this money.

My blog is "Breast Cancer? But Doctor, I hate pink." They used an old description from before I was metastatic. I am not going to be a breast cancer asskicker anymore. But I want to stave off the end result as long as I can.

Anyway, I will search and see who has done perjeta differently. Maybe I should call genetech.

[jacqueline1102]

Hi Ann,

I am on Perjeta and Herceptin. Perjeta's pamphlet will advocate for Perjeta, Herception, and Tax to be prescribed together and usually for those who have not been heavily treated. That "first line" thing. Nonetheless, my oncologist prescribed Perjeta with the Herceptin and my liver spot shrunk from .9 mm in August to .6 mm in October. I have a scan this week so we shall see if that thing is gone, stable, or grown bigger. I have not heard of Perjeta prescribed with Gemzar. If you can get Perjeta now that would be great. Darlene Gant was a woman who utubed herself to get this drug before it was available and I believe she is still around. That was a year ago. Good luck to you. By the way, you are an amazing writer.

Take care,

Jackie

[chrisy]

It's not the oncologist it's the insurance co. My onc made me get it with taxoyere right after taxol failed, because it is such a battle to get it off label. Also, even harder as I don't think there is any data on its use with other agents.

I think Sheila had it with Gemzar for a short time, the argument was I think that taxanes had failed.

I've voted for you a few times, including today and not just for the blog. You've always got my vote.

[CoolBreeze]

Thank you all for the kind words.

A woman in my office said that they didn't have to get pre-approval for chemos. But it might be different when it's off-label. In fact, it probably is.

And boy, am I heavily pre-treated.

If I knew FOR SURE I could get TDM1 Feb 26, I'd be okay waiting. But what if I can't? There isn't a chemo that has worked for me yet. I need one of the newer things.

Those of you who know me know I don't expect miracles. I want to see my son graduate. That is May of 2014. I just want to live until then and see him off to college.

Oh and as for the oncologist, I was just talking about the communication. I think this one is just as good as mine, his patient load just increased a lot and he thought we had a conversation we didn't. That's all I meant to say.

Wishes and wants.....how many do we get in life? I've not had many.

[KDR]

Hi, Coolbreeze,
Do you qualify for compassionate use of T-DM1? I would get on that track right now, so you can start asap. Let us know.
Best
Karen

[CoolBreeze]

I don't know KDR. What would qualify me?

I wish I could talk to my real doctor.

There is a trial in Stockton, which is an hour drive for me. Two hours in the car would be hard for me but I could do it. Does compassionate use mean that my doctor could have it?

Sorry, I really have not paid a lot of attention. Each chemo, my surgery - I thought they would all work or buy me time. Now I know I have a super aggressive cancer that does not respond to anything.

[KDR]

Call Genentech. The numbers are listed in the sticky section, I believe. If Phil is reading this, he can tell you more about this. It's worth a try.
Best of luck to you,
Karen

Treatment Facility: Memorial Sloan Kettering Cancer Center (NYC); World Trade Center Survivor (56th Floor/North Tower);
Dxd: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Discontinue Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
June-October 2011: CEA in normal range. PET/CT stable; no new lesions.
November 2011: Progression in liver. Previous tumors remain eradicated.
December 2011: Begin trial: 09-093 Taxol, MCC-DM1 (T-DM1), Pertuzumab. Brain MRI: clear.
January 2012: NED. Liver mets eradicated.
March 2012: NED. Taxol removed from regimen. Continue Protocol of T-DM1 and Pertuzumab alone.
May 2012: NED.
June 2012: Brain MRI: clear.
June 2012: NED.
August 2012: NED.
September 2012: NED.
October 2012: NED.
November 2012: NED.
December 2012: NED. 09-093 trial completed; continue on extended study 09-037. CT, bone scan and brain MRI clear. Forever, please.
January 2013: NED.

[jellybean]

I found this information in the sticky above regarding T-DM1. I would call the number below and ask about an EAP (expanded access program) near you. Even if Stockton is the closest, you would only have to do this until T-DM1 is approved at the end of February.

This might be easier than getting insurance approval for Perjeta with Gemzar.

I wouldn't wait on the T-DM1. See if you can get started at one of the EAP cites now!

Aminder Mehdi, MD
Stockton Hematology Oncology Medical Group, Inc.
Stockton, CA

Please call 888-662-6728 for more information.

[CoolBreeze]

Well, good news. The oncologist just called me and says they are going to try the perjecta with Gemzar. He warned me about it being a first line treatment and even then, only has a 25% chance of working, but he said I was so young that it would be worth a shot.

So I am grateful.

[StephN]

Yes, good news. Just curious if the onc used the words "worth a shot" because you are so young?

I guess I would just rather be thought of as a person rather than target practice ...

Hope you get to start right away and chip away at that met.

[CarolineC]

I'm so happy for your good news! You and I were diagnosed around the same time and I also have a son graduating next year. I recurred in the sternum shortly after my Herceptin protocol was finished and while I was on Tamoxifen. Last year I had more rads, Letrozole for 3 mths, and Docetaxel- the combination brought my TMs down. I saw my onc today and the CEA is rising so he wants to do scans and is talking possibly chemo again.

He didn't want to put me back on Letrozole after my last chemo because he wanted to see if I could go without and save it for later. I told him I wanted a dual blockade and when my TM hit a certain point a few months ago I started the Letrozole. And the TMs went up abit more.I'm scared. I'm hoping it will just take abit more time, but I also plan on doing at least part of Chrisy's detox because my naturopath has pointed out that my liver function tests are high. How are yours?

Has anyone checked your hormone levels or suggested an aromatase inhibitor or a beta blocker-Lani has posted articles on it slowing down mets to the bone and I just read an article yesterday about it slowing lung cancer-maybe it will prove to slow all cancers because of addressing the adrenaline receptor.

[Joan M]

I would agree with Steph about "worth a shot" and "target practice": Does that make grandmothers not worth it?

Good luck with the combination in getting rid of that met.

[CoolBreeze]

I'm not really that young, I'm 54. Young maybe in their practice as I sit with mostly 80 year olds - one is even 90.

Please don't look for reasons to take offense as I didn't go blow by blow with the entire conversation. He explained that there was only a 25 percent chance of it working and that is in a lightly treated person - less so for me who is heavily treated, and tests are only with people who also do taxotere. He went on to explain the side effects and allergic reactions. We discussed my c-diff and my fears about colon involvement and many other things. He said it was still worth a try for me, even off-label, and I think he meant it in the sense that the side effects might be more tolerable for a younger person, - using two medications that have been untested together might be more tolerable in somebody my age.

I'm sorry, I didn't relay the conversation word by word. I was pretty excited, both that I get the hope of this drug and also to be called young and so I mentioned it.

I don't think people should be looking to be offended, this oncology office has been incredibly kind and everybody in it has been just wonderful to me, and everybody, from day one.

I do have the feeling the oncology practice is taking the costs of this upon themselves. So I am not going to complain about them, and I am going to defend them. They have been very caring with me, and I see them care for others - older people - exactly the same. I have made lots of chemo friends with the elderly there, and have heard more war stories than I care to admit. Nobody gets turned away there.

Including medi-cal patients, which almost nobody takes. I have heard of people driving 100 miles to see them because they are the only oncology group that treats this low-income population. They are as caring to an older person as to a younger and I never see them do that disgusting thing that I see some folks so with old people - talk to them like they are children. I hate that.

I will recommend them to everybody I know. But, God knows I hope never have to recommend them to anybody.

[waterdreamer]

Hi CoolBreeze,
I am sure you will find your answer in terms of a chemo combination pretty soon, and then not only will you be watching your son graduate, but you'll be dancing with him at his wedding!!! I am on TDM-1 and the one thing I have learnt by experimenting with this disease is that it sure loves sugar. So, in the meantime stick to healthy eating that does not include any sugars that are not in fruit form and then not too many of those either. Also try drinking sage tea, it is really good for your liver.
I look forward to you sharing those graduation pictures with us, and then later on his wedding.
Sending love
Fern

[StephN]

Thanks, Ann, for taking time to be more clear. And the excitement was overtaking the clarity.

Now, it is understandable about the "being younger" part. I did not see that many people in their '80's in my infusion suites. Mostly people younger than I (and I started out at age 50!), as it is a general oncology center. Lots of children being treated who did not look at the rest of us baldies like there was anything different about us.

Sounds like where you go is long on compassion, which is nice to know they can still exist. Hope you will be able to see your regular oncologist in the near future and you can be guided with the close eye you deserve.

When do you start?

[ElaineM]

Another option might be tissue testing. There might be some tissue stored from your recent liver procedures somewhere. Special labs take cancerous tissue and test it with up to 12 chemos and chemo combos to see which ones kill the most cancer cells. Ask your oncologists about this. I have a feeling you will be around much longer than you think.
Take care.

[dchips1]

Ann just FYI there are quite a few scholarships for children of breast cancer parents.
I am so grateful that you can try the 2 new drug combo.

When I was diagnosed we had all 6 kids at home, oldest 2 graduated 04,05 I was dx 1/06 stage 4 I did not know if I would see my daughter Graduate in May 2006. I know the feeling. God also gave me an incredible oncologist and Insurance. I got to see the other 2 graduate in 09, and my now 12 year old starting his second semester of 7th grade, and to spend time with my 6 yr old grandson. My goal is to see the youngest graduate college and be a good christian man, and see the others have families and get closer to God and have families. they are 26,25,24,21,21,and 12.
Take care you are an incredible inspiration to others to have hope. More Prayers

[Joan M]

Yes, Ann, thanks for clearing that up. It's good to know that your oncology center is compassionate about treating many patients who would otherwise be turned away. And they are going the extra mile for you by getting Perjeta and combining it with Gemzar, which is not standard of care.

Joan