Herceptin appears not working for me

[cosmicdust]

It appears herceptin is not working for me. I have had 3 cycles of herceptin with taxotere. The results from CT scan show liver mets have grown again and I now also probably have brain mets. I'm to have MRI on brain next week to confirm mets. Brain met appears to be appr 1 cm in size with a few smaller ones as well.

I want to thank Joe & Chris for this site - it has been a great resource for me.
I also thank each of you for your posts as this is where ALOT of information is found.

My oncologist hs been looking into getting Tykerb for me for the past few months...now it will need to be in earnest!

To the 'sisters' (& brothers) who frequent this site...THANK YOU!!!

I shall be back from time to time to see how others are doing. Blessings from Minnesota - I'm still on the planet and fighting!

[Joe]

Sheryl,
We have contacts at GSK which may help in the process. Feel free to call on us, if necessary.

There are now about 30 sites nationwide who are recruiting into the EAP trials:
http://www.clinicaltrials.gov/ct/show/NCT00338247?order=1


God Bless,
Joe

[RhondaH]

my thoughts and prayers are with you. Taker care and God bless.

Rhonda

[Joy]

Hello Sheryl,

How discouraging. I'm so sorry it is all so whacked out. What has caused the brain met suspicion? If that is the case you know that people here have kicked that and moved on. I know how frustrating it is to bother with a chemo protocol just to have things progress. I also suspect herceptin has stopped working for me. I can't remember all of your history, but other chemos can work great in the liver and of course the Tykerb may be jsut what you need. There may also be a trial of some other her-blockers, etc.
Keep us posted and lost of love to you in Minnesota.

[cosmicdust]

Joe thanks for the tykerb website...looks like Duluth will have a site open soon!

Joy, I suspected brain mets as I had what I call little 'poofs' in my head - not frequent, not regular and not like a headache - just not right.

Rhonda - thank you ! prayers for you and HER2 support group & users!

[tousled1]

Sheryl, Sorry to hear your bad news. Try to remain positive and have your oncologist really push for the Tykerb. My prayers go out to you.

[R.B.]

Cosmicdust - what a lovely choice of name

I have had a very quick skim over your posts and see nothing relating to diet.

I know it sounds unlikley that humble food could make a difference but what you eat can signficantly alter you gene expression profile including maybe HER 2.

Fats omega three and six have a signifcant role to play. There are lots of posts you can find using search above. (click on search on purple bar above and enter search term) The Greek Diet has a lot of information on one thread. Trials suggest that getting adequate levels of long chain omega threes (and in some instances sixes) is very important. There is a hint that herceptin could block pathways FAS that allow the body to make long chain fats which would make it even more important. A trial in France showed women that excised lumps were 70% approx less likely to be cancerous in the third with highest high levels of long chain omega three fats (found in fish oil)

Fats play a very big role in the liver.

A trial on brain tumours suggested they had much higher omega six and lower three.

It is recognised that diet can reduce risk profiles.

Please excuse my post if you already have diet or information overload.

Please do discuss any dietary changes with your advisors as fats are powerful, and there are limited side effects for particular groups eg bllod thinning. You can always print out links etc and take them along.

I hope things start getting better for you soon.

RB

[Bev]

Best of luck to you Cos. I broke down and bought the fish oil supplements. They're huge! BB

[cosmicdust]

RB I have read most of the articles you have posted & found them very helpful - I do take fish oils & several other 'vitamins' since dx'd and just eat healthier - even quite a 30 yr smoking habit cold turkey!!! The info you, Lani & others provide are very useful - too bad this wealth of info cant be digested as quickly as this disease metamorphisizes!

I will begin having WBR next week as multiple liesons in brain and most VERY small. Tykerb program to soon open in Duluth where I hope to go next! Do not plan to leave the planet just yet!!! Also get interim chemo drugs to get systemic cancer back in control (liver mets & bone)...

[julierene]

Congrats on quitting smoking cold turkey! It took my dad SO many years to finally be able to quit, and it was cold turkey for him that finally worked.

The Fish and Flaxseed oils are Huge... I also get VERY bad stomach upset with them. So I try to take them during my meals. I find that it upsets my stomach less if I surround it with other food. If I take one on an empty stomach, I pay for it so bad that I won't take one for about a week because it just revolts me that much. I burp fish or flaxseed smells mixed with something sulfer smelling to the point that I cringe every time I take them - and every time I belch that smell I about HEAVE! Even tums and rolaids won't even help in the slightest.

I take so many supplements that I feel sometimes that my stomach HATES them. So I can't ever get on a regular schedule with them. I figure if my stomach hates them that much, maybe I can get away with taking less since I'm probably taking doses 500% of what I actually need. Think I can take 500% worth and be good for 5 days? LOL!!! (kidding, but hey... I do what I can)

Good luck with it! Hope the tip helps you. Julie

[Vanessa]

Best wishes, my thoughts and prayers are with you.

[heblaj01]

Sheryl,

I hope you soon obtain access to Tykerb.
Get also a look at the just released results of a small trial of Xeloda+Temodar
for metastatic brain cancer in the article section at:
http://www.her2support.org/vbulletin/showthread.php?t=25281
Xeloda®/Temodar® Effective for Breast Cancer Spread to Brain

If this regimen is suitable for you your onc may be able to prescribe it off label.
Good luck!

[CLTann]

Sheryl,

Just want to add another voice of concern and care about your situation. Hope you can join the Duluth trial, which seems to be the best option you have. In the meantime, Omega 3 diet (the ratio with omega 6 is the key) wouldn't hurt although doing overboard could ruin one's appetite. Freshly ground flaxseed with cream cheese or other dairy food allow you to get the nutrition you need while achieving the omega 3 balance. I cannot over emphasize the merit of ganoderma mushroom extract powder which adds the immune power; many of my friends with cancer are doing surprising well with this herb supplement. My prayer is with you.

Ann

[Joy]

You are so strong and your attitude is so clear and healthy. I hope you can feel that way about yourself-that you are healthy. I'm sending you quick Tykerb vibes and so hope that WBR is okay for you. Let us know how we can support you.

[pattyz]

Sheryl,

I'm in east central MN, with brain mets for the third time. The good news is that these 8 have responded well to Xeloda/Temodar; twice showing shrinkage after two rounds each. Six times showing stable.

Have had a small bit of progression to two of the eight, so am back on this combo. I was first dx'd with brain mets four yrs ago (plus a week!)

Also have onc looking into the Tykerb for me...

Just wanted to give you this info, to tuck away in case you find hope in it, for use down the road.

Best of wishes for good response from all your treatments.

with hugs,
pattyz

[cosmicdust]

Patty - did you have any radiation therapy as well? FYI tykerb site in Duluth should be opening soon - I found the info from Joe. Dr Repka (onc) associated with St Lukes in Duluth...good luck!!!

I am looking at WBR as have >5 mets (small). Need to get systemic disease in control (liver) too, so possible Xeloda so long as not interfere with getting tykerb later - or even for now gemzar. Taxanes are out for now...

Thanks!! (I'm near Bemidji - where are you?)

[pattyz]

Sheryl,

You're a bit north of me: Stanchfield (just so. of Mora-north of Cambridge on hwy 65). I'll pass on this oncs name to my own onc and see what goes...Thanks!

From the info I've found on the Tykerb, you could qualify for it in two ways: not responding to Herceptin as well as for brain mets. And the doses for brain mets are in conjunction with Xeloda, if I'm not mistaken.

Yes, I've had five seperate focalized radiation treatments for a total of 16 other brain mets. The most I had at one time was 14, but not over 1cm in size. These were treated in batches of four with the final 6 done in two CyberKnifes two days apart. I was nearly asymptomatic and we kept a two month MRi schedule, so I could do this. It was over a 12 mo. period for the batch of 14.

The CyberKnfie Center in St. Paul had just opened after my three SRS procedures at ? (phooey- Methodist??), in St. Louis Park... I MUCH preferred the CyberKnife experience. (it was my choice to go this way, fighting all the way).

The mets have been throughout my brain, including brainstem/pons - twice. One of the current 8 is also there.

I had mediastinal node/s, spot on lung and pelvis just prior to first brain mets dx. I did well and reached NED from Navelbine/Herceptin. No other tx except for brain since then. I've been very lucky...

sorry to go on, I seem to do that these days...
xoxopatty

[cosmicdust]

Hey there! My daughter lives north of Mora in the teeny town of Quamba! Know the area quite well!! Thanks so much for the info and best of luck to you! Perhaps our paths will cross on this journey... :-)