HER2 Support Group Forums

HER2 Support Group Forums (https://her2support.org/vbulletin/index.php)
-   her2group (https://her2support.org/vbulletin/forumdisplay.php?f=28)
-   -   taken off Taxotere..trying to remain positive (https://her2support.org/vbulletin/showthread.php?t=54906)

Sheila 06-26-2012 02:34 PM

taken off Taxotere..trying to remain positive
 
I was taken off Taxotere last week after only 2 treatments due to serious progression....seems while radiation took care of one area, the ugly cancer took up in numerous other areas in the neck and mastectomy breast area....
Had a full day today.C..T scans, Muga scan and echocardiogram ...am waiting to see if my Insurance will approve off label Pertuzamab...as I have been metastatic for 9 years and heavily treated.....checked into assistance from Genentech if the insurance won't cover, but their income guidelines are very strict, makes me wish we hadn't worked so and to pay off our home!!! So for now, waiting to see what scans sow, and trying to remain positive....doesn't seem like there is much more to try as far as chemos go....I seem to go through them so rapidly....Flying on a wing and a prayer right now.....trying to continue the fight...just need the drugs to do it!

LoisLane 06-26-2012 02:57 PM

Re: taken off Taxotere..trying to remain positive
 
Hi Sheila sorry you have to go through all this. Somehow you always manage to kick these setbacks to the curb and I know something will get you there again. My prayers to you Sheila Lois

KDR 06-26-2012 03:19 PM

Re: taken off Taxotere..trying to remain positive
 
Sheila
You were one of my first big sisters and you know how special you are to all of us. I know something will work out for you! Keeping my fingers crossed for the Perjeta for you...that should kickstart things.
Love
Karen

KristinSchwick 06-26-2012 03:20 PM

Re: taken off Taxotere..trying to remain positive
 
Shelia,
I am so sorry to hear that the radiation didn't help more. Stupid cancer. I will pray that your doc can get you pertuzumab or TDM1 or combination for you soon. God bless- thinking of you!

ElaineM 06-26-2012 03:36 PM

Re: taken off Taxotere..trying to remain positive
 
I am sorry to hear you are having more challenges. I hope you get approval for Pertuzamab in combination with something else like Herceptin or Taxol.
Maybe it is not the Taxotere failing. Has anyone thought that Herceptin might not be working to its full potential.
I would also ask about a Tykerb in combination with other chemos besides Xeloda like with Taxol, or Abraxane or Navelbine or Iempra. There might be some good synergy between Tykerb and one of these other chemos.
keep fighting Sheila. Take good care of yourself.

BonnieR 06-26-2012 04:52 PM

Re: taken off Taxotere..trying to remain positive
 
You must be discouraged. But keep the faith.

chrisy 06-26-2012 05:58 PM

Re: taken off Taxotere..trying to remain positive
 
Sheila,

I'm hoping for pertuzumab for you of course...but here's some other thoughts.
I still think you might want to see if you can get a chemosensitivity test on your tumor, although it seems to me largely skin mets, you may still be able to get a biopsy. And maybe go see dr block. They could arrange for that there if your doc isn't interested. Sometimes a chemosensitivity test can id combinations that worked, even with individual drugs that failed.

Speaking if drugs, I dont see ixempra on your list? Could you have missed that one? I remember dr Perez talking about that one at SABCS a few years ago. It was so fun to hear her say Ixabepilone - and she was quite keen on it.

Finally, you might thnk about tdm1 again assuming it gets approved soon ((not waiting for it of course, just a light of hope for the next step) because as you have said, it partly worked for you so may be worth another try.

You know I'm sending hugs and good vibes my dear friend. Hang in there.

Delaney 06-26-2012 07:59 PM

Re: taken off Taxotere..trying to remain positive
 
Sheila, am in a similar situation. Hope you are given the chance to tackle this again. Best of luck

Jackie07 06-26-2012 08:23 PM

Re: taken off Taxotere..trying to remain positive
 
Sheila,

Sending prayers for treatment options - for you and all other fighters.

Pray 06-26-2012 08:44 PM

Re: taken off Taxotere..trying to remain positive
 
Hi Sheila, I'm so sorry, I'm also hoping and praying something comes soon for you! A wise woman once sent me a magnet that says "CANCER SUCKS" and Your right!

ElaineM 06-26-2012 08:57 PM

Re: taken off Taxotere..trying to remain positive
 
Chrisy had some wonderful suggestions Sheila.
It might be time to talk to some other oncologists about other options. Doctors are human beings. One doctor cannot be all things to all people no matter how smart or wonderful he or she is. One doctor cannot know everything about everything.
I alternate between two oncologists and a nurse practioner in the same office. I also keep in touch with my former oncologist who is now practicing medicine in Asia. All three doctors have different knowledge bases, experiences and have worked with different patients, so they each have something very valueable to contribute, suggest or share with me. The nurse practioner is also very helpful, because she has a wide knowledge base. I learn so much every time I see them.
It also helps to help cover all bases and make sure nothing is left on the table or forgotten.
The chemo sensitivity testing seems like a good idea too.
I think it can be done if there are several skin mets are one large skin met.
If your insurance won't approve Pertuzamab you may be able to get help from the drug company that makes it or a cancer organization that can put you in touch with an organization that provides financial assistance or grants to patients for medicines.
Hang in there Sheila. Take good care of yourself.

sassy 06-27-2012 12:03 AM

Re: taken off Taxotere..trying to remain positive
 
Sheila,

Keeping you in my thoughts and prayers. I just know there is another answer coming your way.

Redwolf8812 06-27-2012 03:33 AM

Re: taken off Taxotere..trying to remain positive
 
Prayers going up, Sheila. This is just a "blip". You'll be back on track soon enough.

michka 06-27-2012 07:41 AM

Re: taken off Taxotere..trying to remain positive
 
Dear Sheila; Going through such difficult treatments with such little results.
Is someoene on this board close enough to Genenetech to get you in a trial of TDM1 (which worked partially for you) + Pertuzumab? And why not Taxol ( worked before) + TDM1+Pertuzumab like Karen?
Genenetech , if there is one person here that deserves to be helped it is Sheila! Love and hugs Michka

jml 06-27-2012 08:41 AM

Re: taken off Taxotere..trying to remain positive
 
Oh Sheila~
I'm so sorry you're going through this. You are one of the most knowledgeable, empowered, compassionate sisters on this board and I know you have your eyes peeled on all your options. I also know that you feel secure with your care team & that they are working hard on your behalf to find another treatment combo to knock this disease back again.
My greatest hope is that you will find reasonable, affordable access to Pertuzumab, and from there you & your docs can decide what to combine it with to give you the biggest impact.
Know that you have my prayers & thoughts, as well as that of your family of friends here.
Stay strong and when you can't, lean hard. We are here for you.

Keep the Faith~

Jessica
Dx-5/17/02 - 33 yo; Stage IV - L IDC w/single liver met
1) Herceptin + Navelbine x 8 weeks - No response; progress to innumerable,immeasureable liver mets
2) ISIS 2504 + Herceptin - 6 mos, partial response
3) Taxol + Herceptin x 13 weeks to NED!
NED for 1 year
9/04 - Single liver lesion recurrence
Taxol + Herceptin - on/off to beat back lesion
12/05 - R Hepatectomy; Liver NED until 2009
3/06- Local recurrence - Left breast, IDC & DCIS, but holding treatment while continue to heal from Hepatectomy.
12/06 - L mastectomy + reconstruction through 8/07
10/07 - Recurrence - supraclav nodes
4) Gemzar + Herceptin - on/off controlling nodes thru
9/08 - 7wks Rads to supraclav nodes
10/08 - Acute Renal Failure - nodes in belly stricturing kidneys. placed permanent ureteral stents
Back on Gemzar + Herceptin, but no longer responding.
5) 05/09 - Tykerb + Xeloda - partial response x 5 mos
6) 10/09 - Xeloda + Herceptin - no response, disease progresses
7) 2/10- Ixempra + Herceptin - partial response x 12 wks.
Discovered single brain lesion x 4mm & liver lesions growing while screening for TDM1 + PI3Kinase study.
6/10 - Novalis to treat brain met - SUCCESSFUL!
8) 6/10 - Chemo-embo w/Adriamyacin to de-bulk liver lesion.
9) 8/10 - Screened & Started TDM1 EAP
Immediate response, disease in belly responds dramatically.
2/11- questionable progression of lung nodules
Discontinue TDM1
10) 3/11 - PI3Kinase + Herceptin - intial good response in 1st 6 weeks but LFT's elevated.
11) 7/11-Discontinue PI3Kinase + Herceptin study;
Disease progression - 2 small lesions in colon – docs have never seen this before in BC
11) 8/11 –Start new combo Halaven+Herceptin
10/14/11 -Completed 3 cycles (9 wks)Halaven+Herceptin...
10/18/11 - Scanxiety time -1st scans since starting this regimen
Good interval response, continue on H+H!
10/25/11 – new 2mm questionable spot in brain? Due to Novalis or new disease?
Re-scan in 8 weeks.
1/3/12- Disease progression; 50%increase size & SUV-R lung, middle lobe 6cm lesion.
R supraclav node multiple, miscellaneous nodes in belly. Colon lesions fired up.
12)Herceptin+ metronomic Cytoxan + Methotrexate.
…on a hope & a prayer. Only chemo I haven’t been on is Taxotere.
Hurry up Pertuzumab & TDM1!
Follow Up Brain Scan on 1/18/12…pleasepleaseplease be okay. I can’t take much more.
1/18/2012- 8 new spots in 8 weeks since last Brain MRI
one 2cm spot in brain stem, one 2cm spot in R temporal lobe.
No symptoms, THANK GOD!
1/25/12 – Start WBR x 15 rounds
2/10/12 – Oral Cytoxan WORKING! Melted supraclav node & undetectable by US!
2/14/12 – FINISH 15 rounds WBR;)
6/12/12- Continuing on oral Methotrexate BID & Cytoxan qpm, but on chemo break
for 3rd week due to low counts.
6/15/12 - Yay! Counts rebounded, resumed chemo
6/25/12-Counts dropped again, hold chemo:(

Mary Anne in TX 06-27-2012 08:50 AM

Re: taken off Taxotere..trying to remain positive
 
Hi Sheila!
I'm saying prayers for the Pertuzamab to be allowed some how, some way. Or that the "right" thing is presented that will zap those awful cells that are trying to run your life right now. Love and prayers, ma

Vicki revised 06-27-2012 12:26 PM

Re: taken off Taxotere..trying to remain positive
 
Sheila:
Sorry you are going thru this hell. I am praying the insurance company sees the importance of approving Pertuzamab for you to take care of things. Please let us know how the battle goes.

tricia keegan 06-27-2012 03:08 PM

Re: taken off Taxotere..trying to remain positive
 
I'm sorry to read this Sheila and there have been some great suggestions already and know something will turn up for you! xx

Joan M 06-27-2012 06:08 PM

Re: taken off Taxotere..trying to remain positive
 
Sheila,

Sorry to hear about the progression. Perhaps your onc can try for pertuzumab and perhaps your insurance company will cover it.

Sending a lot of good vibes your way.

Joan


All times are GMT -7. The time now is 06:41 PM.

Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021