herceptin loading dose ??

[Bonnie T]

Hi
I am wondering if anyone getting just herceptin got an initial loading dose ?? I finished chemo last june.
I got a loading dose ( I think 1 1/2 times the normal dose , not sure though) and then the following week I got my regular herceptin and then in 3 weeks again, because I was on the 3week schedule.
Anyway I had to quit since my MUGA went from 51% to 36 %. I get rechecked in October. I started thinking maybe I got too much in a short time ??
Any thoughts ????
Thanks--- you guys are great !!
Bonnie T

[Lisa]

Bonnie,

Loading dose continuing with regular schedule is normal. I'm so sorry you had to quit, but it shouldn't be for long. It sounds as though your MUGA level was low to start with. If you aren't already, try taking CoQ10 to improve the heart.

Love and light,

Lisa

[Rhonda4]

Lisa,

What is CoQ10 and where can I get it (I get my loading dose tomorrow and then am on the 3 week regimen)? Also, I was ALWAYS so careful through chemo not to take supplements so as to not interfere w/ the chemo effectiveness, does this interfere w/ the Herceptin effectiveness? Thank you.

Rhonda

[Becky]

If you switch from getting weekly Herceptin to the three week regimen, do you need to getting a new, initial loading dose or just the regular 3 week dose?

Thank you in advance

Best wishes

Becky

[*_Linda in Calif._*]

My laoding dose was twice as much as my weekly dose. As to the COQ-10...I, too, was very careful not to take suppliments during my chemo because I was in a clinical trial and didn't want to have the suppliments effect the results. But now that I'm off-trial I take the COQ-10 to, hopefully, help my heart (the reason I had to go off-trial was because of heart problems). My Onc is very conservative and although he didn't advise me to take the COQ-10, he didn't object to it either so he must feel that it won't mess up what the herceptin is supposed to do. Hope this helps. Linda in Calif.

[Lisa]

CoQ10 works in cells for energy production. It is a blood thinner, so careful if you take Coumadin. In cancer patients, it has been shown to increase remissions (although some here disagree). It is a great supporter of heart strengthening. A recommended dose by my cancer nutrionists is 50-300 mg per day, taken in two doses per day. It is a strong antioxidant, so the jury is still out on whether it should be taken with/around chemo treatments. But Herceptin shouldn't be affected.

I've finally given up on chemo/Hercetin alone, and am trying to stick to taking a daily course of supplements. Although I admit, and it seems silly, I back off of COQ10 and a couple of others on chemo day and the next.
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You can buy CoQ10 at any grocery, drug or health food store. Prices vary tremendously, but remember you want to take 50-300 mg. per day. Some of the recommended brands include NatureMade(on extra fillers, dyes), Solgar, Solaray, Thorne Basic III (No iron, copper), Nature's Way, Nature's Herbs.
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Switching from weekly to tri-weekly or vice-versa does NOT require another loading dose.

Love and light,

Lisa

[Gina]

Hi, Bonnie,

Cases such as yours really upset me. On other posts I have jumped up and down about the IMPORTANCE of monitoring your CA 27/29 and Serum Her-2 TUMOR markers IN CONJUCTION with your HERCEPTIN dosing....yet, sometimes, I honestly think there are onc's out there just guessing. I am also in complete agreement with Lisa and have long ago GIVEN COMPLETELY up on CHEMO and have been using Herceptin alone (trying many different dosings) with diets and supplements with great QOL benefits since early 1999...altogether I am 8 years out from original DX of ER-/PR- Her-2 +++ (have come and gone through extensive liver mets, and some limited pelvic and sternum mets). Right now I take 6mg/per kg of body weight every 6 weeks combined with careful diet and supplements and simple lifestyle changes (that you can read elsewhere in this site) and I finally have my life back...

IF THERE IS ONE THING you guys take from my soap box...let it be this: IN THIS DAY AND AGE of biotechnology, there is NO NEED TO GUESS where her-2 is concerned.... There are two simple, inexpensive blood tests that are no more complex than a CBC that can let you know ON A CONTINUING basis, what your markers are. I recommend getting the CA 27/29 and serum Her-2 taken BEFORE EVERY herceptin treatment (DO NOT HAVE THE BLOOD drawn after just receiving Herceptin or the numbers will be skewed). Then, if your lab doesn't do it for you...start graphing them. Try to keep your CA 27/29 between 5 and 10 and your Serum Her-2 under 12. Do not go much lower...Bonnie, here is what happened to me. When I first started the 3-week dosing (back in 2003, I think), the standard loading dose was 8mg per body weight, followed by 6mg every 3 weeks. I was only 2 or 3 doses into "THE PROGRAM" when my CA 27/29 dropped to 3 and I started (for the first time in 6 years of treatment at that time) to have serious heart palpitations, lower muga, scaring heart incidents...blah, blah, blah. Despite all this, when it was time for my next dose, my onc, insisting on following the "protocol to the letter" instead of the patient, tried to force me to take it, even though I kept pointing out that my CA 27/29 was 3 and my Serum her-2 something like 5 or 7...I can't remember..I have tne charts somewhere...so YOU KNOW WHAT I DID...I just said no...smile. I told her the dosing was too much for me and that I would take the next one 3 weeks later and that is how my current every 6 week dosing cycle began. I have now been on Herceptin only 6mg/per kg of body weight for over a year and half with nothing but the most STABLE results....bottom line TO ALL OF YOU...not to uh..preach, but you must start gathering the data and getting to know your own body's limits and MAKE your own decisions in conjuction with your respective oncs of course. And thanks, Tom, the loading dose for weekly Herceptin infusions is 4mg per kg and then followed weekly by 2mg, weekly thereafter...fyi.

I personally do not take co-Q 10 in my regimen, but I do a lot of magnesium instead...this is also cardio-protective and has worked for me. (Liquid Mag is what they inject directly into the hearts of some heart attack patients---basically calcium levels in the blood cause the heart muscle to contract and magnesium relaxes it...it is a simple homeostasis that has been conserved for millions of years throughout evolution, if you are into that...as I am but I respect any one 's belief's and am fascinated by intelligent design arguments) However, I had one dear friend who had colon cancer Her-2 negative) with mets to the liver, lungs and bones, and she used magnesium and co-Q10 and stretched it out AFTER THE METS for more than 2 years and had a reasonable, though not great, quality of life. She also found that the Co-Q10 helped her breathing capacity and never needed oxygen...not even in the bitter and oh too sad end, she died in my arms on Jan 8th of this year, only 51 years old. Her memory is another reason that I "SCREAM so LOUDLY" on this board and other places....HER-2 Folks--INFORM YOURSELVES...find out what is RIGHT FOR YOUR TYPE of her-2 and for YOUR body...IT IS YOUR LIFE...Godspeed to us all, Gina