OK I need you guys!!

tammymarie1971 · 11-02-2005, 12:46 PM

HI, I've been doing this cancer thing since '01, mets to liver which at last scan surgery seemed to have worked! Now have mets in spine and pelvis bone. I have now had 6 herceptin/zometa infusions 3 wks apart. at first tumor marker(ca15-3) was 73 than after one treatment it was 39!! then 35...however now it has been 43, 52, & 60, I;m not sure what to make of this. The onc doesn't seem worried and because I'm at the end of a 6 cycle he is sending me for whole body ct scan ultrasound of the liver and chest x-ray. However last night I went to hear a Dr. Castillo speak he is from mexico I know some are skeptical, although my father-in-law has been to see him for advanced prostate cancer and is doing very well now and only need to go back yearly for check-ups and boosters of the meds...They do hydrogen-peroxide therapy and chelation therapy and several other things that really made sense..He also said that the patients have to want to live. He didn't come off as "I can cure anything!" Everything he said made sense. I'm seriously considering staying in San Diego and going across for a 21 day treatment plan. Please give me your thoughts!!! I wonder if I can still stay on herceptin? I feel like the big old black pit is looming over me today too, please do what you guys are so goold at and speak your mind and throw in a little encouragement too...please
Tammy

mamacze · 11-02-2005, 02:19 PM

Dear Tammy,
This is a rough time for you..that black pit is scary and the what-if thoughts come flooding through, like it or not. It sounds like you are wondering if you should try alternative medicine with this Mexican guy. You know, I say if you have thoroughly researched what he does and even talk to a few of his former patients (father-in-law included) and still think it can't hurt; than why not? I would definitely stay on your Herceptin...and at least you have the peace of mind of knowing you have tried everything you possibly can to keep yourself going. Good luck angel girl and keep us posted on your progress.
Love Kim from CT

lu ann · 11-02-2005, 02:26 PM

Tammy, maybe you need to add chemo to your tx. My ca15-3 was 345 at it's peak before rad. tx, then 111 after rad., 21 after taxol, carbo, zometa, and herceptin. Then doc took me off of taxol and carbo after 6 months. I was put on navelbine along with zometa and herceptin and markers started to rise. We switched to gemsar, her, zom, and they rose more. I'm up to 117 so we are switching again to xeloda, her, and zom. We just might be the patients who need chemo with herceptin and zometa. I've been in the pit and never want to go back even for a visit. Take care and God Bless You, Lu Ann.

tammymarie1971 · 11-02-2005, 02:34 PM

I could just kiss you guys Kim & Lu ann thanks for posting back...This pit stinks!!! I really do believe that God is seeing me through this however as soon as my gaurd is relaxed a bit the other "guy" steps in to do his handy work! I hate that, I love that we have this board to vent and encourage and just to build eachother up! Thanks so very much.
Tammy

Daile · 11-05-2005, 11:53 PM

Just wishing you all the best with your journey.

May the sun shine warmly upon you.

Daile

sherri · 11-07-2005, 11:39 PM

Dear Tammy,

Let me know if you have decided to go there. Anything you think would be good for you, it will work. I missed you last time at LG. Let me know when is your next appointment and I'll come to see you.

Sherri

Sandy H · 11-08-2005, 10:26 AM

If you have researched alternative and find something you feel comfortable with then do it. As long as you don't jump into something you know nothing about and it comes across as sounding good. I believe in alternative used as complementary to conventional. Most of it is to build the immune system which is very important as well as rid our body of the toxins that come from the chemicals and disease. I know physicians are against most of these alternatives but they don't have time to read any research available. God knows they don't have enough time to treat all of us. It is easier for them to say stay away from it then to take a chance and do something that we shouldn't. Good luck to you. You will know from your heart what you need to do. hugs, Sandy

tammymarie1971 · 11-08-2005, 09:01 PM

Hi Shoreh, my next appt is Nov 22. I have and ultrasound,ct scan & chest x-ray and treatment at 1:15 and seeing Dr at 2:30. So I will be all over the place!!!! My husband is also coming this time, we are a little nervous about the scans and what they might show....hence the tumor marker rising UGH!!! I think Mexico is a good option..I really don't think this guy is a quack..I know that people think if these mexican doctors were so great why don't they practice in the US or Canada?? but they just can't because pharmacutecal (SP?)companys won't back them with funding because they can't patent "God-made" products therefore no money to be made!! Anyway I think we will go in January...And this doctor in Mexico says he recommends I stay on Herceptin..sooooo Well I don't really know what to think...I'm actually hoping God will lead me one way or the other!! Anyway I only meant to do a quick post..this is getting long!! Take care and if you do have to do blood work on the 22nd I'll keep my eye out for you.
Tammy

sherri · 11-08-2005, 11:48 PM

I'll see Dr. Klimo at 9:15 on 22nd, I'll wait to see you. I'm hoping the result will be good. At my yoga class I ask everybody to send you good energy every day. Don't worry Tammy, you will be fine.

Big hug,
Sherri

Karen t · 11-10-2005, 01:57 PM

Dear Tammy,

My daughter-in-law keeps encouraging me to go to Mexico and my massage therapist (lymph drainage, etc.) says one of his patients is there right now for bc; I have asked to be kept updated on her progress. You are on Herceptin e/3 wks (I'm on it wkly for over a yr now) so perhaps you might consider looking at additional medical options either before or in addition to checking out Mexico. If anyone else has either direct personal experience with the Mexico approach or accurate info from someone else's experience, it would be helpful for all of us to compare notes. BTW, tumor markers are interesting (perhaps others reading this may have comments). When my bc moved to Stage IV and my lungs and sternum were going wild, my marker was 16 - the lowest of all the testings which are usually under 20 anyway. Please keep us posted and know that we care.

Karen T from Sacramento

Gina · 11-12-2005, 02:49 AM

please count me on the CON side of the list you must surely be making about whether to go to Mexico or not. AND WHATEVER YOU DO...do NOT try the hydrogen peroxide treatment!!!!! The quickest and simplest thing to do would be just to take a quick 5-day Z-pak to bring the situation back into control and try to either increase the dosage or the frequency of your Herceptin. ALSO WHATEVER YOU DO...do NOT ... I repeat...DO NOT STOP THE HERCEPTIN. Also, there are just SO SO SO MANY things you could do that are NOT risky and NOT toxic before trying something as risky as you are proposing. HER -2 is NOT like other cancers...in fact, I feel certain, that pretty soon, they are going to splinter her-2 off from cancer and move it over to mere infectuous disease..but that is just educated speculation at this time....unfortunately, the hydrogen peroxide will not work as what you have is aerobically driven...HARD and complicated to fully explain in the space of a paragraph...but please, take a Z-pack...pop a few Nature's Way Purple Top real OLIVE LEAF CAPS 2 to 4 a day (500mg) should be enough...not dangerous...non-toxic and follow some of the basic regimen FAITHFULLY and stay on it till you get everything back under control. If I were you, I would also just SAY no to the Zometa. I am just getting so much negative feed back from both patients and oncology nurses about it. I have one oncology nurse who swears it is part of the problem and not the solution... Fortunately, I have never taken it --but in her-2 folks who have..all I can say is it is heck on the hips and pelvis..especially the sacrum area. PLEASE, please do not do anything rash. If you like, you could write me at home and tell me EVERYTHING you are or are not doing, taking, eating, thinking and I will offer an opinion of some LESS RADICAL options that I would BEG you to at least consider before heading SOUTH OF TWO BORDERS...say hi also to Shoreh from me when you see her next time...

Take care, all
Gina L. Popp
Gina@Comcast.net
Original DX in 1997; STAGE IV mets in 1999; 6 years and 7 months experience with Herceptin; This month marks my 8th year since mastectomy and I am STILL here...smile.