Progression on Tykerb+Xeloda in 6 months

supermehra · 01-27-2008, 06:28 AM

Bad news for my Mom... Wanted to share here our experience:

History: her2 3+, ER-, PR- diagnosed in 2001... has had taxol, herceptin, gamma knife, RT twice 40, brain surgery.

Prior to treatment, she had 3 small lesions on liver, small lesion on sternum, recovering from surgery for solitary brain met (which was unremarkable in PET after surgery)

Treatment given :

6 months of Tykerb daily - 1250mg
6 months of Xeloda (2 week on/1 week off) - 2500mg (reduced from 3000mg due to side effects)

Post treatment :

Disease is now more widespread with growth of lesions in liver, large mass on Sternum, spread to collar bone and some axillary/lymph nodes. Also, there is recurrence in the bed of the originally removed brain tumor.

It's clear that Tykerb and Xeloda failed completely.

We are now reverting to herceptin+navelbine for the moment. Her best response was from Herceptin back in 2004 but was taken off by 2005 - so reason to believe it will still work for her.

Any thoughts, suggestions much appreciated.

doh2pa · 01-27-2008, 07:05 AM

I'm so sorry to hear about your mom, but do not loose hope. I too failed on T/X after about 8 months. However, I started on Navilbene/Herceptin in December and I seem to be responding well. Have not had a scan yet but my pain (from liver radiating to back) is gone and my liver enzymes have returned to normal. I am on this regimen weekly (3 weeks on and one week off) and find it pretty easy to tolerate (some fatigue and minor mouth sores controlled with baking soda rinses). So tell your mom to keep on fighting, we have to hang in there as there are many exciting things in the pipeline of development. We just have to stick around long enough to benefit from them.

Good luck to you and your mom, she is lucky to have someone like you on her side.

GemmaG · 01-27-2008, 07:19 AM

Sorry to hear about your mom. T/X didn't work for me,too. I'm on weekly Herceptin/Navalbine since October of last year (weekly herceptin and two weeks on/one week off navalbine). My scans this month showed no new disease. Hopefully, this combo will do the works.
My love to you all.

Hugs,
Gems

supermehra · 01-27-2008, 06:03 PM

Donna, thank you for your words... was really depressed with the present situation with so much hope on T+X. For the first time in 7 years felt we had slipped into the "running out of options" category.

supermehra · 01-27-2008, 06:05 PM

Gemma, thanks that is very encouraging. What is your her2, er, pr status? Did your doctor talk to you about Tykerb+Herceptin? My mother has a brain lesion and herceptin does not penetrate the brain, hence concerned about that. Carboplatins are next i guess.

Rupali · 01-28-2008, 07:58 AM

I talked to my onc abt Herceptin and Tykerb and he said as they are running the Neo ALTO trial so there has to be some clinical evidence to start the trial.
Plus if you see logically Tykerb + Herceptin should give a double punch to kill the cancer cells from inside and outside.

He was very confident abt it and my onc is the Director of Research for a big hospital in Boston.

Regards,
Rupali

Vanessa · 01-28-2008, 04:11 PM

I am currently on Herceptin/Tykerb/Abraxane. I have an brain MRI scheduled for tomorrow to see if the combination worked. I have been on Herceptin since June, 2006. My doctor did not take me off it when she added the Tykerb. I hope it is a good combination. Good luck to your mom. I will keep both of you in my prayers.

supermehra · 01-29-2008, 06:35 AM

Vanessa thanks. The big concern for us is that the Brain lesion has come back despite Tykerb which was the molecule supposed to traverse the BBB. Our onco feels that since it has failed, no point continuing with it. I guess we need to reassess that.

Believe51 · 01-29-2008, 11:56 AM

My husband failed on the T/X and had great progression while on it. After WBR and a chemo regime of A/C (on #5=8-9 total treatments) things are better for him. Try not to lose heart, listen to the responses from the friends here. Hopefully they can arm you with questions and ammo that you can take to the doctor's with you both. There are many options and we are now finding out that previous drugs are still options too. We too had great hope for the T/X treatment and it was disheartening to watch it fail. We too felt out of options, it weighed heavy on our hearts. Au contrarire...there are options and new trials. Best of luck to Mom and a special prayer for you and these tribulations. For now I will keep Mom in my prayers with hopes for relief.>>Believe51

ElaineM · 01-29-2008, 03:43 PM

Hi,
Tell Mom to hang in there !! Keep searching for answers. Tell the doc to keep searching for answers too !!
Peace,
ElaineM

supermehra · 01-31-2008, 05:18 PM

Our onco has suggested carbo instead of navelbine. Any of you have had success on this combo for fairly advanced situation like our? thx.

Lolly · 01-31-2008, 05:58 PM

Hi; here's a link to a new web site developed for BC patients with brain mets. Pattyz, one of our long time members who's been battling brain mets, posted it last month. Hope it will give you some information on treatment options. I'm currently on Carbo/Taxol/Avastin for skin and axilla node mets, so don't know how effective it would be for your mom's situation. Look for PattyZ in the members list, then click to find her earlier posts about her current treatment of brain mets with Temodor/Xeloda combo. She has seen some real improvement for multiple mets. Perhaps you could contact her by Private Message, she is very sharing with her experiences.

Brain Mets BC
http://www.brainmetsbc.org/