HELP!

To Al, JoJo, Rosie, Patty H., and et al

Hi ! My daughter is writing this long e-mail for me since I can no longer be on the computer for long time due to vision problems. She is such a godsend! She has been reading and catching up on the e-mails several of you have posted during the past month on various interesting things. They have been such a help. I will try to keep this e-mail as organized as I can but I really could use some of your help at this time in my fight for survival. (Al, I really appreciated reading your post about how we have to fight or die) and I don’t feel like dying yet.

My brief history:
I was diagnosed stage IV on Oct, 2002, with mets to lung and bones. On Dec, 2003 I developed one brain met which was cleared with stereotatic radiation but returned in the same place in Dec, 2004. and that one I had Gamma Knife done. According to my onc., I have exhausted all chemos. They are:
1.Adriamycin/Taxotere
2. Taxotere/ Heceptin (Her Positive ER/PR negative)
3. Taxol/Carboplatin/ Herceptin
4. Navelbine/Herceptin
5. Gemzar/Zeloda
6. Gemzar/Herceptin
7. Zeloda/ Herceptin
8. Now on Abraxane/ Herceptin

Update:
My brain met that returned is on the occipital area in the brain near the occipital nerve. It has not been definitely determined as a cancerous tumor or radiation necrosis. They did Gamma Knife in Jan, 2005 and since then I have suffered edema and side effects of Decadron, which I have been on for 7 months. Now I am down to 2 mg of Decadron a day and have not gotten any better but not worse either. They recently did a MR spectroscopy and a PET scan. The results of these tests again were ambiguous. Neurosurgeon says the PET Scan showed the inside of tumor as necrosis (dead) but the outside rim of tumor took up much dye and glowed, suggesting maybe live tumor or white cells trying to heal the tumor since I have no other tumors in brain. So again we play the waiting game with a repeat MRI in 6 weeks. I am waiting to see what 2nd opinion doctor had to say, but he had already told me before PET scan that he thought it was also necrosis.

My other problem is the results of my CT scan on chest for lung mets done 2 weeks ago. They showed possible tumor progression even while on a new chemo (Abraxane/Herceptin), started in April, 2005. It also showed plural effusion which is covering my whole right lung making it impossible to clearly compare tumor measurements. The plural effusion could also mean infection, but my onc. seems to think its tumor progression. I will have the fluid drained out tom. To see if they can determine what it is. My onc. has already told me that if it is tumor progression, there are no new chemos to try. The only thing left is clinical trials. A lot of which I cannot qualify for because of brain mets (if I really do have it). I am really scared at this time because I don’t feel like I’m dying yet. My onc. is a person who follows protocols to a T and won’t change. I have a 2nd opinion appointment at UCLA with Dr.Pegram to see what he has to say. Presently, I am going to UCSD in San Diego.

Questions:
For anyone who can help me fight this cancer

1. Has anyone experienced what I am experiencing with the ambiguous brain tumor?
2. Has anyone experienced plural effusion? What caused it? Did it get resolved?
3. I have had my right lung radiated in April, 2005. Can the effects of radiation cause plural effusion?
4. Does anyone know of any clinical trails to try? I know about the Avastin/Herceptin one but don’t know where it’s at. I think some of you are on it.
5. Have any of you been allowed to repeat chemos that you failed in the past? My onc. says she will not do this.
6. Have any of you tried different combinations other than the ones I mentioned that I tried and failed?
7. Any supplements that you have tried?

I feel that my onc. has given up on me and I should just lay down and die, but I am still walking and most of the time and have good blood counts. I have never had a blood transfusion. My CA-27-25 tumor markers have never been above 60 and I am in generally good health other than the cancer (which is bad enough). I know there is something else out there for me. I truly understand your post Al about how unsympathetic oncologists can be. If any of you can be of help through knowledge, resources, or things you have tried, please reply to my post .I realize that I have not been offering my own help in these message boards and posting more often, but one thing for sure, I pray for anyone of you who asks for prayer. My daughter will be checking the board often for replies and reading them to me. I hope to respond more often on your needs too if I can. You can also e-mail me privately at hetrahan@aol.com. May god bless you and I hope to hear from some of you. I will keep you updated.
Hope Trahan

I think Dr. Pegram may have a trial of Avastin with Herceptin. Also, read previously posted her2group post on lapatinib--in a group of patients previously treated with four chemo regimens for a variety of solid tumors (breast cancer included), half responded to lapatinib with stable diseas. That might not sound like much, but it might buy you time for other therapies to become available. Perhaps ask the group if anyone is on a lapatinib trial.

Also, see if you can get your tumor tested for EGFR (her1) and see if there could be a trial for Tarceva (and/or Iressa if it is still available for trials in breast cancer)

Good luck!
Lani

GOD BLESS YOU HOPE -

What a fighter you are - and please continue to be.

I am also down to the Abraxane. I do not know if it is working on me either and thought about Avastin next. Not knowing much about it, will need to wait and see.

But Hope remember, each time we think we are down to the bottom in their bag of tricks, something new pops up, so please keep the faith and we will continue our search for the next new drug.

There are a lot of wonderful people on this board who are commited in the search.

Take care Hope.

Irene

Hope,

I've heard of people going back to original chemos that may have been effective for them. Considering the amount of time that has gone by, have you spoken to your doctor about this?

Eric

Hope,

Sorry that I can't help you much except I am wishing you all the best in your endeavor to fight the decease. As far as I remember Lolly has tried Navelbine/Herceptin more than once with great success.

Julie

Hi, Hope--

My mother is Stage IV with lung mets and pleural effusion, and we live in San Marcos, so we're near you. Are you seeing Dr. Barbara Parker at UCSD?

My mother's pleural effusion was malignant. I know that you can get one from radiation rebound, but they can't know until they biopsy the fluid. She had to get her effusion drained weekly while on Navelbine/Herceptin b/c the chemo wasn't working. Once she switched to Taxotere, the effusion went away.

I'm really sorry to hear you are having progression on the Abraxane. I don't know if my mom's current onc will let her repeat chemos or not--her previous onc wouldn't. Good luck with your UCLA appointment--I hope they have positive input.

Regards,

Stephanie

Dear Hope,

Please don't feel that you have to contribute to the message board as that's NOT what the intent is. The board exists so that members such as myself may lend some measure of support in times of need.

Like everyone else in our group my heart goes out to you but we are not doctors nor miracle makers.

That being said, I agree with Irene on something poping up and also with Lani thinking lapainib may be an answer. It's true that some chemos you have developed resistance to, may be non-resistant after a 6 month holiday but the question is: which one? When it comes down to the crunch you don't want to re-try the old ones unless no other options exist.

Everything I've read on Iressa suggests it will never be approved for breast cancer, tarceva or avastin are certainly options if you can get them.

I will post later after I look-up a few things.

Hang-in,
Al

Hi Hope,

I have just returned home last night from the hospital over the long weekend which I had spent in there. It was just a stupid allergy to a new narcotic (yet, ANOTHER one!... adding to morphine & vicodon on my "allergy" list)

Anyway, I will do some research over the weekend and will let you know whether I have found anything worthwhile.

I have a follow-up appt with my onc tmw morning. If she happens to be in a good mood, I will sneak your question in and see what she would say. She is the director of breast cancer clinical trials at the hospital.

Meanwhile, just hang in there!! I know easier said than done.... We are right on your side, cheering you on! :-)

Hugs ~ JO.

Dear Hope,
Dear sweet fighter angel, you go girl and what a role model you are for us, fighting like hell...
And to have such a daughter who is so supportive; what a gift....
dear angel, we are not miracle workers but as you say, we share what we can...
my suggestion is that you consider speaking with the head of the Seattle trials, Dr. Disis or one of her research doctors, Dr. Devon Webster...they may not have a study for you but they certainly would have some advice...this is Dr. Devons email address:
devonweb@u.washington.edu .. it can't hurt to ask.
I think Kim from CA recently dealt with the complicatins of brain mets; you may want to try and contact her.
Also, I have had luck eating a vegan diet with lots of green growing sprouts and wheatgrass juice...cut out sugar and cut back carbs; I just feel like controlling my diet gives me one more little bit of control over this cancer and as a side benefit; I feel great.
Hold tight to your name; Godspeed...
Love Kim from CT

To Stephanie in San Marcos,

Hi I am Hope's daughter, Julissa. I saw your reply and it sounds like you mom has a similar plural effusion. My mom would like to contact your mom if possible through e-mail or phone. Our home number is 619-470-3559 Julissa

[StephN]

Dear Hope -
So sorry to hear that you are still bedeviled with the same problems that you had earlier in the year - AND that you are only just NOW weaning down on Decadron. That stuff is SO debilitating!! I am still trying to recover from my doses last winter. In another 10 days you will feel a new level of energy as your sleep pattern gets a little more back to normal. This alone will help your morale!

When is the appt with Dr. Pegram?? He should be able to get you on some new routine.

You might want to contact Genentech about the Avastin trials. This drug works differently, cutting off the blood supply to the tumors rather than trying to kill the cells as they divide like normal chemos.

Here is contact info:

For information on Genentech BioOncology clinical trials:
Click here or call Genentech's Trial Information Support Line at (888) 662-6728.

All best thoughts coming your way from the sunny "misty woods."

Dear Hope,
I agree with Kim from CT; Dr webster is a supporter of our board and may be able to set you up with people from her facility who can help you. Call her and she what transpires but mention you are part of the HER support group.
Al

Hope,
Here is a link to a site that lists most of the chemo combos:

http://www.cancerbacup.org.uk/Treatments/C...binationregimes

Al

Julissa--

The best way to reach us is on my e-mail, which is nunez67@netscape.net. Hope to hear from you soon.

Regards,

Stephanie

Julissa -- I have just sent an email to Hope. Take good care of yourself. :-)

Dear Hope,

If you are certain that you are ER- PR- and Her-2 +++, I would STRONGLY advise you to keep this e-mail, at least as a back-up fail safe, if you really get to a place where you feel you have NO other options. What I am about to suggest to you is a last- ditch effort, highly controversial and completely unproven by the masses, but I have seen it do wonders with my own eyes. When you gave your history noting the CA 27/29 markers and your otherwise good blood work and obvious STRONG will which I so admire, I believe this could help you more than anyone would guess. Also, controversial, but keep in mind that if your CA 27/29 is around 60, your serum her-2 levels are MUCH higher. Probably roughly between 180 and 300, which is not that bad, but not that good either. You could find out by having a serum her-2 test to know the exact number as a base line before starting this regimen and then monitored at regular intevals throughout, which, though controversial, would give you a clue to if it was working or not and beats guessing and the old onc stand by of "wait and see..." sighhh.

First thing: GET THYSELF to a Z-pack...a 5-day one if you can (Pfizer's Zithromax). If your onc refuses, usually you can get one from your primary care. Take 4 all at once, like they do to treat serious infection, provided your kidney function is excellent...if there is any worry about kidney failure, take only the prescribed 2, then follow one, one, one, one, each day, thereafter. This should help with the lungs and rev up the ol' immune system.

Eat as well as you can while on the Z-pak and rest up. Get a muga scan. If your muga is at least 58-60, re-start HERCEPTIN ONLY (NO CHEMO NO PRE-MEDS of any kind--especially NO benadryl) at 8mg/kg (then 6mg next week, then 4 mg, then 2 mg/ 2 mg etc.) of your current most accurate body weight, this is NO time to fudge that number..smile. If your muga is not too good or between 50 and 57, use loading dose of 6mg/kg (then 4mg next week, then 2mg, 2mg...). If your muga is flat out horrible, less than 50, use only the prescribed 4/mg loading dose, followed by the old standby of weekly 2/mg, etc. Then, watch your numbers...treat weekly until the CA 27/29 is around 10 and the serum her-2 is about 12, but then treat only as frequently as necessary to keep the numbers there, say perhaps move to the 6mg per 3 weeks maintenance regimen. This HERCEPTIN ONLY regimen is particularly good for folks who make the personal decision to do no more hard core chemo and are dealing with QOL issues. When coupled with a sound diet and non-toxic supplemental base regimen and moderate exercise, this approach can be very powerful and life extending and even, sometimes, life-enhancing. Of course, it is a very personal decision for all us, and I do note that you have had brain involvement and I have no experience with this regimen of herceptin alone and brain mets, but it is something to throw out there to be considered. I am no onc and can not prescribe anything. I am only saying what I witnessed and is purely anecdotal, and not proven. For what it is worth, my heart goes out to you and yours, Gina

[StephN]

Gina wrote:
"Then, watch your numbers...treat weekly until the CA 27/29 is around 10 and the serum her-2 is about 12, but then treat only as frequently as necessary to keep the numbers there, say perhaps move to the 6mg per 3 weeks maintenance regimen."

This whole routine will hard to get past most med oncs - but may be worth a try if Herceptin is felt to be a good drug for Hope and was effective in the past.

I have never taken a larger dose than the prescribed amount, and have been on Herceptin (with less frequent Zometa) for over 3 years. My CA27-29 has been very steady at between 19 and 23 during this whole time.

NEVER has my tumor marker been as low as 10 since my diagnosis. Maybe with a bigger dose it could get there, but I feel pretty good the way it is. Of course I am not trying to reduce tumors as Hope needs to do.

I am actually curious as to what the number is for most stage IV BC gals who are in remission.