STAGE 1, GRADE 3, ER-, PR-, HER2+

Hi, Char and Michelle! Made it through A/C #2 without mishap this a.m. Feelin good on the steroids, drinking lots of water. Had a good lunch, bought more stuff for indigestion and dry eyes. My son's car broke down in the 100 degree heat, and I told him, "oh well, better call someone else for a ride". I'm not going out in that dirty polluted air in this heat! This time I could smell/taste the chemo as they did it. Still have some of the taste in my throat--yuk. Found out there are a lot of star trek fans at the infusions center, nurses and patients alike. They got my comments about feeling like I was being assimilated, they got the Borg Queen reference, and best of all, they gave me the "live long and prosper" greeting when we left. I might try to find them a good poster to put up there somewhere for our mutual entertainment.

Hope you all had a great weekend! We enjoyed our company and it forced me to tidy up the spare bedroom, which badly needed it. Hoping to be the energizer bunny again, 'cause I've got things to do, places to go. Thanks always for your tips and hints and words of encouragement.

Love, Deb

Hi again. Metallic taste gone. Went to work half a day. Yay. Love Mary Tyler Moore!

This is the most positive group I've seen on this website! I love you gals! My friends Joanne and Maureen have been my mentors. Both are BC survivors and have gone through treatment with style and grace and good humor. Joanne is doing GREAT and is loving life. Maureen had a much tougher diagnosis, but is still going strong and living and loving and laughing. Same for my cousin Jan, who is a 14 year survivor with a really tough diagnosis.

We stand on the shoulders of the giants who went before us!

Have a great day! I'm going to!

Love, Deb

Had a big, very long, very good day. Went with another BC survivor in a.m. to lobby our congressman to support healthcare reform. Walked dog with another friend who is a BC survivor. Traded in my 10 year old minivan as part of Cash for Clunkers program and bought a little chevy for clunker plus some cash and a small car loan, which my son will be able to pay on his student salary. So he will go back to college in a car that doesn't break down twice a month! He is paying for part of the insurance, but I'll be trying to get a better insurance rate tomorrow after I get some sleep.

Job well done! We got the price we set out to pay and didn't budge an inch!!!

Now, to sleep, which I plan to do like a ROCK.

Have good dreams all.

Deb

hi girls,

i am new here.i am from romania ,bucharest.same like you.surgery made in turkey,anadolu hospital affiliated with johns hopkins.i am on taxoterre,adriamicyne,herceptine.2'nd round on the 3 of september.

i have a little boy of 2 ,4 years old.sorry for my english.

the problem everywhere we go is that they treat the effect but not he cause.surgery,chemo,radiation...herceptine ,standard,what can i say.for me the oncologist gave me taxoterre and adriamicyne wich is a very strong combination.it affect the hart not now but in future.the same as i saw goes with the herceptine.

i was in germany at heilderberg universitary hospital to take a second opinion.they said that they would never have given me this beacause of the toxicity of the adriamicin.

what can i say ,they are like the lawyer....i have one at home...2 doctors 3 opinions:)).

i do chemo in turkey and rads maybe in the same place because here in romania we do not have the proper technology,maybe next year.....

you have been talking about natural vitamins ...here in romania we have a history about these remedies.we use tea,aloe vera,noni,mumio and many other.

we have specialists that combine energo-therapy ,with diet.no meat,no milk,eggs...thing that comes from animals...no animal protein...they say that this is the food for the cancercell to grow.

to induce cell deth or aptosis someother use sharkaid.

there are so many things i have to talk,i need to share with u.

all the best

gabriela

Gabriela, I have seen a video of a talk by Sara Hurvitz from UCLA which makes me wonder why anyone gets Adriamycin any more. She explained that Adriamycin had been shown to be more effective then other chemos for tumors with the TOPO II amplification (a particular gene mutation). But this mutation only occurs along with HER2+ cancers. Now that we have Herceptin, treatment with Taxotere, Carboplatin and Herception has been shown to be as effective as treatment that includes Adriamycin and it has less heart risk.

So now there is no reason to give Adriamycin for HER2+ tumors and for HER2- tumors don't have TOPO II amplification so Adriamycin isn't needed for them either. 

There is an important difference between the effect of Herceptin and Adriamycin on the heart. The heart function recovers from the reduction due to Herceptin after the Herceptin treatment is stopped. Adriamycin has a long term effect on the heart. And in the BCIRG 006 trial the combined effect of Adriamycin plus Herceptin was worse than either one alone.

I'm sorry you have to go to a different country to get treatment. It is hard enough to do this near home.

Char, even when Herceptin rounds are given after Adriamycin as in AC-TH chemo, the rate of heart problems is higher than when only Adriamycin or only Herceptin is given. I did not get Adriamycin. Fortunately, I was treated after the results of BCIRG 006 were released and my oncologist paid attention.

That trial had three arms each with about 1000 women.  The arms wer AC-T, AC-TH and TCH. In the AC-T and TCH arms after 4 years, there were 4 events of Grade 3 or 4 cardiac left ventrical function problems. In the AC-TH arm there were 20 cases. In the TCH arm after 3 years, the average LVEF was about 64 (it started at 65.5 for all groups) and it got back up to that at 450 days after the start of treatment while the curves for the other two were still going down. For AC-T it was 63 and for AC-TH it was 61.

A number of other grade 3 and 4 side effects were significantly lower with TCH than AC-T including neuropathy even though that is associated with the taxanes, it looks like the AC-TH makes it worse.

And there was no statistical difference in the results between AC-TH and TCH. Both were much more effective than AC-T.

I had TCH therapy and I'm doing fine. The last two cycles were rough - mainly a lot of fatigue. Part of the problem was low magnesium because I got odd nausea from the Carboplatin or the Neupogen. I would get sick suddenly without warning and my magnesium levels went low. Once I got a transfusion plus IV magnesium 3 weeks after my last chemo, I felt much better. It took me a few weeks to get back muscle strength I had lost. I finished TC in February and I've felt pretty much back to my normal self by mid April (except then I was having rads so I had some discomfort from that). I'll get my last Herceptin in 4 weeks.

hi girls,

how are u all doing,

i am on my 4th round of coktail molotov:)) i shall have it on the 14th.as i told u i am conffussed ac/t/h or t/c/h.the onc from romania says she wants to change the medication in t/c/h.i am feeling ok from time to time drippy nose,menstruation problems.i sent a mail to the onc from turkey to ask him what he thinks it is quite difficult to be on the way all the time from 3 to 3 weks although i fly just 1 hour to istanbul.istanbul is a very beautifull city i am full of it))

this is life girls,we shall pass this .we have to take care of us.what is so concerning is the problem with the the onc doc.

if u have yahoo messenger you can add me gabytza_23@yahoo.com

hugs to all

from bucharest, romania

gabriela

hi girls,

i had my 4 th chemo wensday, last week.i had donethe chemo in romania.i had to ask the onc from turkey about changing the taxoterre/adriamicine/herceptin into t/c/h.he said it could be an alternative.hmm... my husband asked the turks to show him when they prepared the dosage because we found out that a pacient from romnia had a problem with the dosage.when we heard of it it made us so concerned so we begun to ask questions.as i know it is given 6 mg of herceptine per kilogram so i ha to have 375mg of herceptine.therest up to 450 [thisis what contain 3 bottals ]should be throned out in 48 hours.when we started to ask questions they called the pharmacist chief, the manager of the hospial and another 2 to tell us that we cannot see when they prepare the stuff.we asked why.they said these are the rules.we said that it is our right to know what is in the recipient.they said take or leave it.our money,our health,our sorrow...this is why i had the 4th treatment in romania.so far i am ok.some menstruation problems.i did not have my period.a little nervous 2-3days afte chemo.i shall have the resr ofthe the treatment here in romania.radiotherapy i shall see.

hugs

gabriela