Need Your Advice Again

[Patty H]

I know how you feel. I have been off chemo a year now. I had a pet scan in Dec. which was pretty good. But then I had one in June which shows a 2.2 c. leision on my hip. This grew since the last pet. We are trying to get the tykerb which seems to be taking for ever. I saw my Dr. yesterday and he doesn't want to start me on anything else since it could keep me from getting the tykerb. I am leaving on a cruise in 3 weeks. But it is kind of scarey knowing that my lung met is growing and the one on my hip is too. I think how long should I wait.

Patty H

[IRENE FROM TAMPA]

Thanks again for all of your responses - my mind is going crazy not knowing what to do -

JUDIEK - how did you tolerate the Avastin and did it show results pretty quickly?
What are you on now? The trial in my area with the Avastin will have
it in combo with a chemo (I am not sure which one's at this time) and
am still waiting to see if I even qualify. Should know by this week.

PATTYH -The waiting is the worst. I guess that we just need to go on our
trips and try to forget everything else except having a MARVELOUS
TIME. Hope you have a great time on yours and that everything will
be ready for you on your return. Are you getting in a trial or trying
to get it through the compassionate use program?

R.B. - Thanks again for all of your input. I am printing some of these and
going to ready them. I just want to be careful not to take too much
of anything and as I understand, Mega 3 can thin your blood. I had
a stem cell transplant a few years back and my plateletts (although
are ok, they tend to drop now and then) so I want to be careful.

I am a little disappointed to hear that most of these targeted drugs still need to be given with a chemo to work the best. Hopefully, with lots of research, we will get to a time when that will not be necessary.

I am working hard on raising money to walk in the SUSAN G KOMEN 3-DAY WALK which will be in our area in October. I am looking forward to the event (I will be walking with my 3 daughters and some good friends ) and pray that I can still be involved come Oct. I have lots of plans for this year which I am very excited about and hope to complete and with the Grace of God - I WILL.

You all are great.

[R.B.]

If you have any questions on the three six issue please come back.

To be boring it is key to look at intake on a full and logical basis with nothing excluded.

We are so used to considering polyunsaturates as good. I just had a long converstaion with some one on the subject of three sixes and asthma - "oh I just use olive oil"..... further inquisition ...further inquisition..oh "I use grapeseed to cook my meat, but.... they said.

I explained grapeseed was very high in sixes.

I will let you know if their child's condition improves with a keen eye on sixes and some added falxseed and fish oil.

RB

[al from Canada]

Irene,
There is another option which may work well for you.... pertuzumab is an monoclonal antibody which works independantly of herceptin + and is also an EGFR (HER1) and HER3 inhibitor, and the good news is that it is also made by Genetech and the trial allows herceptin with it. I would be tempted to look at this before tykerb.
http://www.clinicaltrials.gov/ct/show/NCT00263224
good luck,
Al

[al from Canada]

and for those not familiar with pertuzumab (omnitarg):
http://www.csmc.edu/pdf/jco2005232534agus.pdf
Al

[judiek]

I did very well with the avastin and taxol. My blood pressure crept up a bit about 8 months into the trial...they started me on ? cant remember and it brought it right down. I was able to quit taking the drug when I came off the avastin.

My results were quick. I had a scan 8 weeks after treatment and my 5 lung nodules were gone, along with a pleural effusion. The liver still had 9 tumors but they were all much smaller. It eventually wiped out 5 of the 9 liver tumors. I felt that most my side effects were from the taxol.

Best of luck to you with your decesion.

Warmly,

Judiek

History

Discovered lump Sept. 2002 (mammo didn’t pick it up).

Had 3 mammo’s in my 30's...not to sure mammo’s did me any good.

Dx Oct 2002-just turned 41.

IDC and pagets disease, stage 2B, grade 3/3, nottingham scale 9/9.

3cm, lumpectomy,clean margins.

er/pr-pos, her2 neg, 2/25 nodes..

Nov 2002-March 2003-FEC (5fu, epirubicin, cytoxen).

March 2003- started tamoxifen.

May 2003- finished rads (33tx).

June 2003-CT/PET Scan- clear.

Started 3 month check ups w/lab.

July 2003-Lost my brother.

Dec 2003-complete hysterectomy/lost my father 4 days later.

Jan 2004-extensive mets, both lungs & liver, pleural effusion(labs normal)stopped tamoxifen .

Feb 23, 2004-CLINICAL TRIAL AVASTIN/TAXOL.

April 27th, 2005-DONE WITH AVASTIN/TAXOL...PROGRESSION.

15 months on trial which made my 5 lung nodules disappear/started with 9 liver nodules...now have 4 left -Progression was small pleural effusion around lung, heart and some slightly enlarged nodes in chest and abdomen.

May 6,- Sept. 14th, 20005-ARIMIDEX...didn’t work.

Sept 14, Progression to lungs and liver again...looking for another trial.

Oct 5, 2005-Started another clinical trial...XELODA and TIPIFARNIB...CEA now 15.0

Dec 1, 2005-Progression to lungs and liver again...OFF XELODA/TIPIFARNIB trial .

Dec 27, 2005-Started NAVELBINE

Dec 29-31, 2005-Hospitalized to drain 2 liters off right lung lining.

Jan 10-15th, 2006-Hospitalized to drain 2 more liters and dangerously low counts/ Lost my MIL.

Jan 24, 2006-Last tx of NAVELBINE...symptoms worsening

Jan 31, 2006-Started GEMZAR @25% reduction. CEA is @37.0

March 16, 2006-Ct showed significant improvement in chest and liver! Tm’s coming down.

June 19, 2006-CEA @3.4 and CA27.29 is 15.8!!

WE NEED A CURE