taxol/carbo/herceptin not working

Pam P · 10-22-2009, 01:03 PM

Just got home from the doctor. My PET/CT shows slight progression on bones since the last scan in July. This didn't worry the onc. too much as it appeared mild, but my ca2729 jumped another 350 points since a month ago. It's now up to 1358!!! It's almost tripled since July.

This has the onc concerned - and me very scared. He is taking me off the taxol/carbo & I start navelbine next week. I could have started today, but my platelets were only 89 so had to wait. I will continue with weekly herceptin & zometa every month.

I was on navelbine for 1 yr several years ago. I don't remember the s/e being too bad, it did knock down my wbc so had to do neupogen which I'll do again.

But I don't think from what I've read that when people go back on a previous chemo that it is very effective or for very long so I'm very nervous that the tide is turning for the cancer being under control. Just in 2009 taxol/avastin failed, gemzar failed, taxol carbo failed, now on to navelbine.

The research nurse is checking to see if there's a t-dm1 that I can get into now, but nothing has panned out yet for various criteria restrictions.

Has anyone done navelbine a 2nd time & had any luck? To me navelbine seems whimpy up against taxol/carbo.

I feel like I'm starting to go down a spiral with all these changes, more common low white, red & platelet blood counts. The good thing is I feel pretty good - grateful for that - but I can't even trust how my body feels to reassure me that it's staying strong.

mmoons · 10-22-2009, 01:35 PM

Pam-

I do not have any advice. But I wanted you to know that I think about you all the time. I know there are so many here that can share their experiences. Just know that I am sending you loads of prayers and healing thoughts.

Maureen

schoolteacher · 10-22-2009, 01:54 PM

Pam,

I hope you can get in the trial. Let us know what happens. You are in my prayers.

Amelia

10-22-2009, 05:37 PM

Hi Pam it is Shonda Gaylord. You and I have done alot of the same treatments since the beginning for me. I started out on taxol 1yr,& carbo 4mo herceptain (on going) I took 1 yr off from any chemo just herceptain.. Started Tykerb Xeloda for 6 days couldn;t take due to severe pain in back every time I would take my dose. Started Gemzar and did 2 rounds ended in Hospital developed ARDS and Gemzar induced TTP. Not expected to live. On vent for 8 days. In hospital for 3 months had to learn to walk again. It was HELL!! However I have been home this month for 1 year. In January I started on Navelbine and got 4-5 months out of it. Tried Xeloda for 2 days and had the same pain and it was all to familiar so I stopped immediately. Took off 1 month to move in June. Started back on Taxol and I am finishing 2 more weeks on it. My scans right now appear stable and suggest some healing, but my CEA tumor marker is also going up. My hemoglobin is 10.6 this week so it is takiing a steady decline over the last 3 weeks as well. She thinks we are getting all the benefit at this point. I have gotten about 5 months from this drug as well. She is wanting me to start a trial of 4 injections for anemia but I have to wait and see what it is next week b4 I will qualify. There is a 1 in 7 chance of placebo though. I am waiting on the name so I can research on my own. She told me it is having some possitive effects in bone mets. Now here in Dallas Texas the T-DM1 trial is closed she told me and you have to have measurable disease like in your liver or lungs which I don't so I am glad for that!! There is also another trial after the taxol she talked to me a little bit about last week and it is Heat shock Protein 90. I am still researching and waiting on more info from the onc office re: this. Have you heard of it yet? I am scared to do a trial due to my history and not knowing the possible side effects, but I am very interested in what I have heard so far. Now you said you have done Taxol/Avastin. That was the Hype for me in June but I was not cleared by my cardio doc due to BP issues from the TTP. So I was not able to take Avastin. I have been cleared now, but when I asked about adding avastin to the taxol now she said we'd have to change chemos and give avastin. It is so weird because symptom wise I am perfect. NO PAIN in my back which is a huge deal!!! The scans are showing stable, but some lytic activity it said. Why does the marker go up? What did the avastin do to you and how long were you on it? Are you short of breath right now? The carbo is what is causing your plts to drop. Your bone marrow is tired right now. Re they still u sing Neuprogen and arenesp injections? They have stopped arenesp here per data that out comes are worse. I have read both sides and sometimes in mets they still give it, but not my onc. She will transfuse now. When I was in the hospital I had over 54 transfusions. I have not had 1 since the day I left the hospital. Praise God. I had 21 days of plasma exchange and that was 13 bags of fresh frozen plasma daily. I was also given plts a few times b4 they know it was TTP and my body was eating them up and it actually makes that situation worse. My plt count got down to 2. Yours is low at 89 right now. Anything under 10 they completely worry of bleeding out. I am so fortnate as I sit here and type this. I apologise for going on. What other chemo options have they given you beside Navelbine? I kind of agree with your feelings of that drug.
Praying for you
Shonda

DanaRT · 10-22-2009, 05:59 PM

Oh, Pam, I don't have much to offer either but will be thinking of you as you change treatment course.

You are fortunate to live in a large city where there might be a lot of options. Hopefully, the T-DM1 trial is a good option.

Love,
Dana

ElaineM · 10-22-2009, 09:13 PM

I am sorry to read your news.
If you can't get into the trial can you take Herceptin and Tykerb?

Mary Anne in TX · 10-23-2009, 04:01 AM

Hi Pam!
Sending good wishes your way.
I'm one who is a Navelbine fan, since my tumor markers went down with it! Keep believing girl. I'm praying for ya. ma

Pam P · 10-23-2009, 05:03 AM

Thank you all for your encouragement. I've been checking on the websites for t-dm1 trials and there are none that I qualify for. Either I've had a prior treatment that excludes me or it requires measurable disease which bone mets does not qualify. So it looks like it will be navelbine again for me unless the research nurse finds something I missed.

Shonda, You asked about my experience with avastin. I was on it with taxol for about 9 months. The avastin caused me some ill effects: pleural and pericardial effusions, high blood pressure, shortness of breath, nose bleeds, all of which have finally resolved since I've been off the avastin. I would suggest you talk with your cardiologist before you agree to do avastin. I'm sorry you've had so many serious complications from your treatments. What treatment will you be doing now? Praying it's an easy one for you.

I haven't heard of this heat shock protein 90 before so I'm going to look it up now.

hutchibk · 10-23-2009, 09:51 AM

Pam - I see that you have not had the other taxanes, either... Taxotere and Abraxane. My onc is a big fan of Abraxane, and that may be our next go to with Herceptin, when the time comes. My onc also showed a lot of interest in an IPI 504 Heat Shock Protein 90 Inhibitor trial.

I found this info... don't know that it's the exact trial, but it tells about HSP90. http://www.gistsupport.org/treatment...taspimycin.php

Carolyns · 10-23-2009, 10:48 AM

Hi Pam,

I don't have any advice. I just want to wish you well and tell you that you are in my thoughts and prayers.

Love, Hope, Peace, Carolyn

chrisy · 10-23-2009, 01:24 PM

Pam, remember the online searches may not bring up all the study locations, especially if there is a "lot" of activity with trials opening/closing as with T-DM1. You might try a different tack, find a study that looks interesting and contact the principle coordinator at Genentech to see if there are new ones coming to a location near you.

I agree, the HSP 90 area is starting to generate some excitement although I am myself not familiar with what the targeting agents are yet. But if you can find a trial of this, it could be worthwhile. Works differently than anything else...

Re Navelbine, I have not had any experience with it - but I do know that people have had really good results with it. Some were in combo with a taxane, some just with Herceptin - and true, these folks were a bit more chemo-naive at the time. But if a therapy is not as heavy in terms of side effects, it doesn't necessarily follow that it is wimpy. It depends on the biology of the cancer.

Keep pushin' girl.

10-23-2009, 02:38 PM

Pam it is shonda again. I got the name of the trail for the anemia drug, It is ACE-011. Try searching that and see if it is of interest to you. Have you had more than 5 prior chemos? See I am not sure where I fall in that catagory since I have also repeated a drug. Looks interesting though.

ammebarb · 10-23-2009, 04:33 PM

Hi Pam. I haven't any information or advice...just wanted to say that I am thinking about you and keeping you in my prayers.

Barb A.

Becky · 10-23-2009, 08:21 PM

Dear Pam

Don't forget about adding an anti-hormonal. It won't hurt a thing and may immensely help.

hutchibk · 10-24-2009, 01:07 AM

Becky is right. We just added Aromasin back into my treatment after 3 years without... since it really can't hurt anything and can possibly gain us something. A small measure that might (cross our fingers) have an important added positive effect.

Sheila · 10-24-2009, 06:22 AM

Pam, I contacted Genetech via phone and they did not even have some of the trials I found for T-DM1.
I contacted seven different locations in 4 different states, and will go back now and see if any disqualified you because of bone mets being unmeasureable...i do remember that question, and some required a bone scan....if we can find a trial that you can qualify for, you can come stay with me if its close...

Lori R · 10-24-2009, 07:17 AM

Pam,
There is A LOT to be encouraged about in terms of additional treatments that could be effective.

Taxotere - It appears you had taxotere wayyyy back in 2003. My onc was going to put me back on it again after recurring after only 1 year. So, there is a sentiment out there for reusing drugs that were effective before. But....I also see that it may have caused some difficult side effects. So, taxotere might not be the most desirable.

Abraxane - Rather than return to taxotere at the LAST minute (thanks in large part to this site), we decided to use abraxane as it was proven to be more targeted, effective with fewer side effects than taxotere. I am on it now and am back to NED. So, this could be another non-trial option. Probably more attractive than taxotere.

Tykerb/Xeloda - It looks like you were on Xeloda but without Tykerb. Could you do a Tykerb/Xeloda cocktail? Maybe add Herceptin to round out the punch?

TDM-1 Trial - on the board there is supposedly (I haven't called) a TDM-1 trial that is open here in Denver at the University of Coloroado. It is a 50/50 chance of receiving TDM-1 or Tykeb/Xeloda. I think it is worth a call and if it works for you, you would be welcome to stay in our guest room.

See....LOTS of options!!!!!

Please keep us posted...Love...Lori

margiermc · 10-24-2009, 11:14 AM

I will pray for a healing for you. margie

Pam P · 10-24-2009, 02:53 PM

Thanks for all the suggestions and offers to stay with you if I got into an out of state trial site!

To comment on some of the suggestions:
1) taxotere - I had so many awful side effects the 6 months I was on it I would only agree to take that again as a LAST resort. Pleural effusions - could hardly breathe, tear duts ruined resulting in several eye surgeries and jones tubes, severe problems with eating - everything tasted rancid, very weak, tired, etc.
2) abraxane - my onc. doesn't want to use it yet since I've been on taxol now for a long time - will keep it for down the road.
3) aromasin, arimidex - & others in that category - my onc. doesn't want to give that along with a chemo. He says the work on different principles. The chemo working best on fast growing cells, the hormonals slowing down the growth/divisions so they don't mix really effectively. He said he'd be willing to put me back on it at some point when I'm not also doing a chemo (Lord knows when that might be!) even though when I was on femara, and then faslodex they didn't work for me anyway.
4) I'll see what the research nurse says next week, but I can't find a t-dm1 that looks like I qualify, so guess it will be the navelbine. I hope I can get a year of stable out of it like last time - don't know if that's possible but it would be wonderful. Then maybe there'd be a t-dm1 opening for me.

Midwest Alice · 10-24-2009, 04:31 PM

Hi Pam,
I have been keeping up with your post.
Sending hugs.
And sending out prayers for your healing
Blessings for you my IBC sister,

Alice