|
Guest
|
Hi, Barbara H. and Becky,
Thank you, thank you, thank you for responding to my LONG and WHACKY posts. We REALLY, REALLY need to find out how many folks on this site are 1) BLOOD TYPE A negative, 2) BLOOD TYPE A positive (these first as it is statistically known that bloodgroup A gets all cancers at a higher frequency than ANY OTHER KIND and I have been finding all types of NEGATIVE blood (A-, O-, B-, and AB-) in relation with HER-2 3+ especially those who are also ER negative and PR negative. Also, many folks with all kinds of BREAST cancer have negative blood. Sometimes there is also a Jewish/Scottish/Irish/Basque/Hungarian ancestory, even going WAY back and there is a connection, an ancient one, that may even take parts of our DNA back to interbreeding (which is now confirmed to have happened) with the Neandertals. But that is a long interesting story and the data on any of this is very scarce, highly debatable, and the little there is VERY complex and convoluted. Unfortunately, much of my knowledge is from original research that I am not able to really share in an open forum at this time as I am still collecting data, revising hypotheses, etc. Still, there may be something we can all learn. So, if any of you out there KNOW for certain that you have A+ or A- or any other type of negative blood and that you are definitely HER-2 positive, please let us all hear from you.
Barbara, I think your case and mine are VERY similar. First of all, I want to ease your fears about the odds of herceptin "stopping" to work on you. I guess you read I have been using it ALONE in various doses for over 6 years with nothing but the greatest of benefits. Of course, in theory, it is feasible that something could change to really muck things up at the cellular level, but highly unlikely due to the way Herceptin works, which I have posted somewhere elsewhere on this site. In a nutshell, as long as your cells continue to send up her-2 receptors like we are currently putting up cellular phone towers all over planet earth..., then, yes, HERCEPTIN will "HIT" them...the old LOCK and KEY (oleic acid, too by the way, should continue to knock the her-2 receptors out, if Dr. Menendez's research pans out.) Sadly, it has also been my experience that it is not the herceptin which quits working, but the patient, meaning, that any treatment, even a moderately mild one like hercepin, can take its toll.
That said, let's hope some other research can actually figure out a way to stop the cells sending up the her-2 receptors in the first place so we all can be freed from both herceptin, her-2 vacs and this disease at its root-cause, forever. As grand as Herceptin is girls..., all I can say is after 6 years, even taking it only every 6 weeks for the last year and half or so, it gets REAL OLD REAL FAST..you have to PLAN your entire life around taking it...AND you ALL KNOW WHAT I MEAN [groans and moans of agreement sound out everywhere in her-2 support group cyberspace...smile]
So, to your question about the 6-weeks thing. First of all, it is HIGHLY experimental and I tell EVERY one who reads me write about it NOT to try it at home. This is not for the faint of heart. First of all, unless you are absolutely certain you are Her2+++ and ER- and PR-, I can not advise you as that is what I am and the only data so far that I have is over years of testing on myself. There is another woman about to try something like it, but I can not give that information at this time. What I can say, is if you are generally healthy, with mets all under control or no mets at all, you might consider investigating it. The FIRST THING YOU MUST DO is CHART your CA 27/29 AND Serum HER-2 numbers for several months, if you have not already been doing so. Even if you don't think you have, get a copy of your whole chart and see if you can find these numbers then start graphing them yourself. Fortunately, Labcorps graphs mine for me as part of their regular serial tumor marker reporting process. Then, basically, you
use the markers to "manage" your Herceptin dosage. You back up the biofeedback marker process by getting regular scans, at first every 6 months. I cannot begin to tell you how controversial this is. Most oncologists will NOT, I repeat, NOT consider letting you try it, because the risks are great. While testing various dosing, I contracted pelvic mets and bone mets (now back in control...whew). Had I stayed on the directed dosing, I am certain, the mets would not have happened...but, I am equally certain that I could not have gone back to working so much, researching so much and enjoying my child so much if I had to sit in a onc office EVERY WEEK or even EVERY 3 weeks for the past 6 years...and no offense to the many of us who heroically do do this as I have as well, it is just I am a free spirit and I LOVE/HATE getting HERCEPTIN...I think you can understand, better than anyone, what I really mean....sighhhh. I am not your onc, but in my experience, skipping one week (as in going for 4 to do your vacation) would NOT be irreparibly detrimental, but it would be a risk, especially if you have no clue where your markers are. Usually, even if your onc KNOWS where your makers are (and trust me, often THEY do know but do not tell you), they usually are content to keep the CA 27/29 in what is so far considered the "NORMAL" range of less than 38. You will have to do the dual testing on yourself, but what I learned over years of bloodtests on myself is that this was not the case..unless the CA 27/29 was less than 10, my personal serum her-2's would be higher than 15, so I always recommend keeping the CA 27/29 between 5 and 10 and the Serum Her-2 under 12, just as a rule of thumb. You have to take just enough Herceptin to maintain this. [There is also a higher risk of heart damage if you go too low on the CA 27/29 FYI.] If the numbers in the blood are higher than that, it has been my experience, that you've got trouble brewing somewhere, and trouble that is often on such a microscopic level that the scans or even the PET scan may not be able to see it, but remember one person does NOT make an entire trial or study. That said, follow your own heart...remember it IS YOUR BODY it is YOUR life. The dosing for the every 3 weeks is usually 6mg per kg of body weight. That is what I am on every 6 weeks, if it helps. But also remember, I am extremely healthy, work out, have a muga regularly between 60 and 65 and have no other disease, no high blood pressure, perfect blood chemistries and have a diet that is accidentally rich in oleic acid...just so you know. The general consensus, since herceptin has a half life of something like 19 days...is that the only way I am able to do this is either: 1) I have somehow naturally built up some form of anti-bodies to the illness, or 2) Dr. Menendez's oleic acid research may have some validity as Herceptin knocks back 48 percent of the receptors and oleic acid, in test tubes at least, knocks back about 46 percent. It may be that by doing both, I am knocking out nearly all the receptors on a regular basis. Like so much of this, no one really knows. The other possibility is my carefully crafted diet and supplement use over the years that is rich in many things besides oleic acid. I have posted it in its entirety somewhere but in a nutshell, I start my mornings with a glass of some sort of purple juice usually welches grape, POM, or cran or all three that does NOT contain CITRIC acid...very important!!!!. I grab a shower or cook breakfast to let 30 minutes or so pass, as it is not good to mix fruit or fruit juice with food or supplements. I then take ONE 500mg of evening primrose oil, and 20,000IU with 800 IU A& D in fish oil tabs, one quarter tab kelp (good minerals--Korean and Japanese cultures believe seaweeds kill cancer cells) and one tablespoon plain ol' good quality olive oil. I eat a breakfast that I am pretty certain NO ONC in her right mind would advocate. Usually bacon and a fried egg (bacon grease incidentally is high in oleic acid it turns out...go figure smile), over easy with whole grain high fibre toast smothered in canola margerine with a side of raw baby spinach leaves, a few spoons of Lucerne PLAIN nonfat yogurt and a cup of 1 per cent milk (milk fat important to digest supplements) which I use to down 600mg of PLAIN magnesium and 2 olive leaf capsules with real OLIVE LEAF in them. I then go for a 3 to 6 mile walk and get on with my day. Later on, I will include 2 more olive leaf capsules and after dinner 2 more mag tabs (300mg each). Just before bed, I put 40 percent zinc oxide on my feet in the form of Lucerne's knock off of baby Desitin Diaper rash cream, as zinc is best absorbed through the skin (boosts lymph function and energy levels). Then I try to get deep, continuous sleep. I recommend to my friends at least 7 or 8 hours...but I generally only have time for 5 to 7, but sometimes make up for it on the weekends...I also do a very mild detox once a month that includes a long soak in an epsom salts (magnesium sulfate) mineral bath and a simple light enema...I used to go through all the hassle of coffee ones, but now, I just buy standard bottled ones CVS brands...I sometimes have Echinachea tea with honey before bed. Once each quarter with the change of seasons, I may do a deeper detox that goes 2 days just to clean out all the dead cancer cells the herceptin drags through the digestive tract. Also, keeping the intestines clean turns out to increase the body's ability to absorb oleic acid, fyi. I also regularly avail myself of acupuncture, acupressure and infared massage (no data on that yet) All this takes some time and discipline, but to me, it beats sitting in the herceptin chair, week, after week. STILL, the final objective of my research is to pin point what is really causing our cells to send up the her-2 signal...for years we have been told its just "IN OUR DNA" but that is not always the case...mostly the overexpression is made by mRNA (messenger RNA NOT your nuclear DNA) which could be getting the signal from a renegade set of instructions (say from a vaculated plamid??) but that is a story for another evening..now that I have surely bored you both to tears....yawn...smile. Just one word for Benadyrl..."Don't" see earlier explanation. Don't know about Allegra, but if it works by dulling the immune system, I wouldn't risk it unless your allergies are unbearable otherwise. You might try taking a Z-pak about a week before allergy season clicks in and la voila...you will notice something strange...you don't have allergies any more...smile... Becky, hang in there. I am glad you shared that you are A- (not sure just yet what it means but I think it could be significant, will keep you posted). Are you also Her2+++ and ER-PR-??? Have you also been taking ONLY herceptin alone with good benefit??? Have you read the NEWER studies that say the reason at first that they thought herceptin alone wasn't working was because a lot of women in those earliest of trials (we are talking way back in the mid-90's folks) didn't respond to herceptin alone because, guess what, most of them were HER-2 negative. More recent studies, done at about the same time period as the 3-week dosing trials confirm that herceptin alone works about 40 per cent of the time, but to quantify, mainly on folks who are already HIGHLY Her-2 positive as in +++. For instance, if you are ER+ and only slightly her-2 positive, say her-2 +, herceptin alone may not be a good option as the estrogen factor may be promoting your cancer more than the her-2 and remember gals, the Herceptin, is only targeting HER-2 receptors on cells. If you don't have her-2 receptors, sadly, herceptin is of no benefit. However, if I were certain I had some her-2 somewhere, I would fight to get to take herceptin any way I could because it is just so relatively non-toxic and helpful. All of you should remember that it is important, especially for our newly dx friends to be sure to have both their tumor and their blood tested for her-2...there are some cases where the tumor may not be positive, but the blood is full of it...usually indicating cancer elsewhere, possibly related, possibly unrelated. Shockingly, there are folks with two and more different cancers going on simultaneously.
Thanks for reading, sorry there seem to be NO short answers...smile,
Gina (GPOPP@COMCAST.NET)
|
Linear Mode
