On to next combo--H,P and ???

[Mtngrl]

Hello, friends.

I learned today that my latest PET scan shows some progression. After talking it over, my oncologist and I decided to do Herceptin, Perjeta, and Navelbine, and I was going to start today, but then my treatment nurse said it's not safe to give Navelbine into my hand. I need a port for it. (I don't have a port yet.)

So I'm going back Monday to have another talk with my oncologist. Maybe I should do a taxane again. It was very effective for my liver mets (they're gone).

Does anyone have experience with other three-drug combinations? Side effects? Managing side effects? Most of all, I'm interested in what might be good for lung mets.

Thanks!

[sassy]

Hey Mtn girl,

I don't have any words of wisdom on treatment but wanted you to know I'm thinking of you. Hopefully words of wisdom will come your way.

((Hugs))

[Saygoon]

Wishing you good results on whatever you decide

[StephN]

Hi -
Sorry T-DM1 is over.
Did you ever have a port? Taxanes can also be hard on your veins.

Can you get a port? Since I only have one good side after lymph node removal and some subsequent lymphedema, it was good that I had one as my veins are not all that reliable.

Hope you can get the situation resolved soon so you can get to attacking that met. Best thoughts and prayers for a good result.

[Redwolf8812]

Praying for great results, whatever you decide.

:-) Penny

[Mtngrl]

I'm leaning towards trying just Herceptin and Perjeta. We can do that for three months and do another scan, then talk about adding chemo.

I've studied the PET report more closely. The largest fdg-avid area in my lungs is a little larger, but avidity has decreased. As my oncologist said, "We're treating an image."

Penny, I'm sorry your liver tumor has increased. That's not good news.

I've been putting off getting a port. I have pretty good veins, and they can use both hands, because I haven't had surgery. But of course I can get one if needed.

Paula T., Sassy and Steph, thanks for chiming in. It's good to have HER-2 buddies.

[KristinSchwick]

Amy,
I feel your pain, I am also stage IV without a port and want to avoid one for as long as possible. I have great veins and my onc has never mentioned needing one for any reason, he sees them as more of an infection risk (couldn't agree more, as my tissue expander gave me cellulitis and I lost it only a few weeks after I completed radiation therapy). Kadcyla was also short lived with me, I never really had a + response, only stable disease for a few months. Have you tried Halaven? I'm currently on that one, but am looking forward to getting off it as it's given me bad neuropathy in my feet and ankles.

I am wondering what are the next "sexy" new drug combos after Kadcyla and perjeta, speaking of which you should totally get on perjeta, it is so easy and biochemically superior to herceptin and Kadcyla. Best wishes.

[Mtngrl]

Dear Kristin,

Good to hear from you.

I agree about the infection risk and other bothersome things about a port. The thing about Navelbine is if it gets outside the vein (even spills on your skin) it causes tissue damage, sometimes severe. So a port avoids that issue, but not the one about putting something so toxic in my body. I don't know if I need to go that far just yet.

I read on the Perjeta website that if Taxotere is stopped, you can stay on just Perjeta and Herceptin.

I see you were reclassified as ER+. I went the other way.

[Kathy T]

Hi Amy! I just had my first dose of Herceptin and Perjeta after 41/2 years of TDM1. I stopped because of liver issues, not progression. I'm hoping it keeps me stable. Good luck to you.
Kathy T

[Mtngrl]

Hi, Kathy T.

I'm glad you were stable on TDM-1 for so long. Too bad side effects derailed that.

I had some good response at first, then each subsequent scan showed me (apparently) losing ground. PET/CT scans are a double-edged sword, because not all inflammation is caused by cancer.

Lots of different chemos damage the lungs and cause breathing problems. So does Tykerb. I've been on Taxol, Abraxane, Tykerb and/or TDM-1 for most of the last 3 years. The only exception was 8 months on Herceptin/Arimidex, and I had progression on that (probably because, as it turns out, I don't have estrogen receptors in my mets.)

[KristinSchwick]

Amy,
You are totally correct about the tissue damage caused by some chemos, they are called vesicants. And they administer them very slowly and ask if you feel any pain while the meds are administered. Don't let any one bully you into a port, if you read my signature, you'll see I've been on my share of chemos, gemzar burned going in, epirubicin, carboplatin, all while getting an i.v. started each time in my hand or arm. No ports for this girl.

And to give you some confidence in the P/H combo, I was started on P/H and taxotere and had to stop the taxotere after 3 months due to side effects and my insurance has been happy to keep me on the P/H combo ever since.

[Vicky]

Hi Amy- I had good results from Halaven for lung mets- along with Herceptin. This fall when the mets returned, I did two-weeks of targeted radiation to my lungs and shrunk the newest spots. They responded well again. But a couple of other new lung spots have recently developed, while I was on Tykerb. So I just had my ovaries out and have started Arimidex. I had a good run of stable on Tamoxifen and am hopeful this will settle things down again.

Will be looking to see what you end up going with and wishing you well in what you decide!

[CoolBreeze]

I have to agree with your nurse - I did one round of navelbine without a port and it was very painful. My veins felt burned and damaged and I wasn't able to move my arm for a time. The veins were like stiff strings inside my arm and I wasn't sure they would heal, but they eventually did. Because I only have that one vein to use, I had to protect it and get a port. Navelbine is extremely toxic.

Because I wanted to continue with that drug, which I found a very easy chemo to take, I got the port.

However, I totally understand not wanting a port. I didn't either and the only way I agreed to get one was when they said they'd put it in my arm. I wasn't going to have one in my chest. And, it is still there. I am happy that I can cover it with clothing because I'm super thin and it sticks out about an inch. I know it would be horrible in my chest and interfere with clothing and seatbelts and stick out where I don't want people to look.

Although I don't agree you should try Navelbine without a port, I do think you should not have to have one if you do't want one and so if a port in your arm is not a possibility, than maybe try a different chemo until you get down to no others. I know for sure my veins could not have taken two infusions of navelbine.

It did cause some regression in me - at the time I was trying to shrink my tumors so that I could get a liver resection and it did that. So it worked.

Nothing else has worked for me except for Gemzar, which was also the only chemo that caused me nausea. It was my 7th chemo though so it was time.

We are all so different in how we react to things that it's hard to say what drug will work for you, but I think if your nurse doesn't want to give you Navelbine in your hand she shouldn't have to, I think she might know something there and I've been through some awful things but wouldn't do that one twice.

Good luck I hope you can come up with a solution.

[Mtngrl]

Ann,

First of all, I want to say how thrilled I am that you are doing well now. I know it's been touch and go for you, more than once. I'm delighted you're stable and feeling good! I am very happy for you, and for your family.

Secondly, I appreciate all the detailed information about ports and Navelbine. I had no idea one could have a port put into an arm! I figure I'm going to get a port eventually. I don't really object to them, exactly. I just don't like surgery. I am not small or scrawny, so if they place it carefully I don't think it'll be much of an aesthetic issue.

I am so grateful for all the moral support, friendship, and helpful information on this site. I love you all.

[Bunty]

Hi Amy,

I'm just catching up on your news now, and sorry that you are now finished the Kadcyla dance. I can't add much to the discussion about Navelbine, or other chemo combos. I did personally get two good separate responses for my lungs on Abraxane, so that's a thought.

I've had a very successful port now that has been in continual use for over six years, and never had a problem with it. A friend of mine at treatment had one in her arm, which I liked the idea of, but she did run into some problems with it.

Sending you hugs and prayers Amy,

Best wishes
Marie

[Paula O]

I wish you the very best with your new treatment, Amy.

Here's an old thread re: arm ports from back when I had one you might find interesting if you end up considering getting one: http://her2support.org/vbulletin/sho...light=arm+port. Jackie also posted an abstract about them in that thread.

[Lisalou]

Hi Amy
I can't speak to the chemo meds but if you do get a port ask for a "low profile" port, sticks up much less and works just as well as long as the person is not overweight/obese. Good luck with the up coming treatments and decisions.
Lisa

[Laurel]

Amy,

It is time for my "port story." Feel free to pull up a chair, grab a cold one, settle in, friends.

When I was newly diagnosed I found it all a bit incomprehensible that I, a woman who faithfully had her mammograms, would present with a small invasive tumor that required CHEMO and something called Herceptin for a year! I really thought all these fine medical-type people were barking mad! They wanted to begin infusions just as soon as I could have my "port" (isn't that a wine?) placed which involved a small surgery. Problem was that there was no available time for weeks out and I knew I would chicken out if I had weeks to contemplate the horror pf chemo. I really was on the fence about doing it, so I prayed a little old "fleece" prayer saying, "ok, Lord, if I really need chemo then let me be called today to have this port placed tomorrow!" Alright, probably not the best prayer, but you know how it is when you are really desperate and raw with fear, and besides, I was pretty sure that it was a tall order and I would not be subjecting myself to this chemo-crap.

Have you guessed the rest? Yep, it wasn't a half hour later that the same nurse who had just told me it would be weeks before there was an opening called to say that I would "never believe this" but someone had just called to cancel and I could have my port placed the next morning! She was thrilled. I wasn't. All I could think was that I really did need chemo. Sobering. I acquiesced.

Early the following morning I was on a gurney waiting to meet my surgeon and scared ----less. In strolls this young thang that looked to be all of 15 and a serious Doogie Howser look-alike. Panic! So what do you think I asked young-thang? I demanded to know just how many port placements he had performed, to which he replies, "oh, about 700." Seven hundred? Seriously? There are that many people in Central Pa needing mediports that this kid could be placing 700 of them while still in diapers? Well, that cracked me up and I told him he was hired!

The whole procedure was brief from my perspective having slept through it entirely. The soreness was minimal and it functioned well throughout my treatment. I was glad I had it placed, and oddly, it helped to boost my confidence in my medical team, something I badly needed.

I suggest you schedule your placement and inquire how many ports the young-thang who appears from around the curtain has installed. Then offer to burp him and send him off to scrub up for your surgery!

Good luck!
Laurel

[Mtngrl]

Laurel,

That's an amazing story! Thank you so much.

I know what you mean about baby-faced doctors. When did they start letting 9 year olds go to medical school?