TRIPLE POSITIVE GROUP
Comments
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Hi Jenn - thanks for this, very interesting to read about the Taxotere (was not aware of this at all). By all accounts the Public Hospitals in New Zealand use this as there standard drug. Will be interesting to see what leverage if any I can manage to get them to change to Taxol. Will have to see what the Oncology team recommend when I get to meet with them.
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Hills - I'm a kiwi girl :-) Grew up and went to school in Auckland then moved to Sydney when I was 27. Where are you in NZ?
I would have thought that you would be able to discuss options with your onc if you have concerns and sensible research and questions...
regards Jenn0 -
FYI, I was reading that Taxol has a slightly higher risk of neuropathy than Taxotere, although they both can cause it. I think it is good to know what risk you are trading with one drug vs the other. When I learned about the very small risk of long term hair loss with Taxotere, I decided to try the cold caps. We'll see if it works for me or not.
Edited to add: I do believe the Taxotere causes more anemia and WBC issues, though...but you'll have to verify that. I've read a lot lately, so some information may be getting mixed in my head.
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Glad you doing the cold caps dance!!
Hils - The TCH is every 3 weeks for 6 rounds then herceptin every 3 weeks to complete a year. The 9 weeks protocol is probably based on the FINHER study where they got great results with 9 weeks of infusions.
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Hils - I mentioned the 9 week FinHer study to my doc, and she didn't think the data was strong enough yet to make clinical decisions based upon it. However, she did say the 1 year recommendation had no basis to start with, but that is what the trials were done with, so that is what we do b/c we have the evidence to back up that it works. She said there are 6 month vs 12 month trials going on right now, but that the data isn't in yet, so we have to go with the evidence that we have right now. I know that may not help much, but that is what I was told.
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Debbie my onc had me on TCH x 6 (full year of H) as well as another women in my building who is also triple positive and stage III (several nodes positive. Oh an yet another woman in my building who isn't HER2+ also just finished TC. The last gal (node negative) actually switched treatment centers because she didn't want to do AC due to heart issues.
My onc was involved with the inital trials of Herceptin (actually presented with Dr. Slamon). She also tries to reduce the SE especially the long term serious ones like heart issues and lukemia.
It appears all NCI approved centers tend to use the AC-TH regiment. I do believe Dana Farber is an NCI approved center.
Both are valid aggressive treatments. The AC is I think a few percentage points better in the latest studies. AC has been around a lot longer so it can be hard for some to change. One of the issues with A is if it does affect your heart you may not know for years. Granted I don't know how common that SE is.
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jenn/hils
its interesting that the FEC regime is the "gold standard" in Canada/UK/Australia. I was actually freaking when i came on this site wondering why i didn't get AC-T which is so common in the states.I think it is regional/hospital preferences aswell b/c i know some people here who have had ACT. When i questioned the DF onc she said that there were no studies comparing the AC-T vs FEC-D protocols but she would "guess" that because they both contain a taxane and a anthracycline (im sure i spelled this wrong) that the efficacy is the same. Jenn - good for you for pushing to have taxol. I had taxotere and thankfully my hair is growing back. What is interesting to note that in my research I found out that the E is 3 times more expensive then the A - shocking since i didn't think in public health care they would use the more expensive drug
I have a question for the ladies who have had a mastectomy. (I am having a bi-msx in august) do they still do screening - MRI/Ultrasound etc to detect any chest wall/node reaccurances or is that it, no more breast screening????
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Rozem right now I get "felt up" 3x a year (onc, BS and gyn). I'm sure that will eventually go to 2x a year. It's just a physical exam. Now I know the FDA recommends MRI screening of silicone implants every 3 years to make sure they have not broken/leak but I don't know what my PS will recommend. It might be less often.
If you have a symptom like bone pain, breathing issues, lump or swollen node then they will do some of those tests.
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Rozem - When I lived in Florida they would do a mammogram of my mastectomy side. When I moved back to MInnesota they don't do mammograms on the mastectomy side because as my BS told m,e it was sad to say, they aren't "cost effective". That being said, I found a lump myself on my MX side this past summer and am going down the BC trail all over again. Ergh.
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dechi - was the first BC her2? did you have reconstruction done at the time? this shit is sneeky...good for you for finding it early
i am thinking of paying for my own mammo - i just came back from my onc and NO they do not do mammos with msx - so how do you catch something if you have an implant in the way?????
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rozem, I am to have mammograms every 6 months post BMX, and alternating MRI's, but only because I had close margins after my MX. If I'm clear for a year or so they will bump me back to a slower schedule, etc. The standard is just a physical exam post BMX. My case is the exception.
dechi - that really sucks.
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Hi Jenn
I am in Auckland, you old home city. I live on the border of Mission Bay /Orakei and work in Parnell, just across from the Domain. How long have you been in Sydney?
I am sure I will be able to discuss with the onc, I just need the information so that I can have that discussion, so I am really thankful for all of the input.
Cheers - Hils
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Hi Dance and Omaz
Thanks for the info - I think there are a few more research studies that will complete in October 2012, so in the future we will have even more info to use, but a bit late for us. Plus I know that patients are being recruited here in NZ to particiapte in the SOLD research project (hope I used the right acronym)
Cold caps - I have seen this mentioned a few times, does it reduce headaches or reduce hair loss.
Stupid question but has everyone lost their hair during their treatment? Or is everyone different?
Cheers - Hils
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Well, PS called today and he amd my BS have talked extensively. The BS has told hime she wants him to remove the lump that is there. Since literally nothing showed up on the mri or ulstrasound, they think it is fat necrosis, but since nothing showed up, and there is a lump there, she said for her peace of mind, she wants him to remove it, or at least look at it.
That means that now, my easy peasy surgery on friday that was just going to be lipo, fat grafting and nipple reconstruction will also include, removing the implant and using that avenue to get to the lump. I hope that I am not inviting trouble. Now I am nervous....about taking it out and putting it back in, and about what they will find.
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Aw, fluff, that sucks,I will keep praying for you.Hills, I lost most of my hair so buzzed it. But it is different for everyone, and cold caps can save hair. I didn't want to bother to try, but some have had good luck.Christina, hang in there and don't scare me, I am now a week behind you, LOL Much love to all, and small SEs
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Good luck fluff, I'll be thinking of you Friday!0
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fluff, i'm wishing you the best for friday. let us know how it goes. hugs to you.0
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Ditto good wishes to Fluffy.
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Good luck Fluff :-)
Hills: I went to school in Epsom so know your area of Auckland well :-) Glad to hear the info you are getting here may be helpful... Hate to have to confirm but all of the chemo choices you will get will cause hair loss :-(
Jenn0 -
Fluff at my nipple recon with fat transfer I also did a revision to lefty. That meant opening up lefty removing the implant and adjusting the pocket. Granted they weren't removing any lumps but almost as invasive. Requires a little more healing but you'll do fine. What sucks is that scar is redder than the other. It's getting better but it's behind all the other scars.0
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Fluff, I know it is making you more nervous to have the surgery be more involved, but at least you will have final peace of mind about that lump. Wishing you well! I'll be getting my port on Friday so we will be surgery sistas and can pull for each other.
Hilz, yes, cold caps are worn to prevent hair loss. There is an active thread on here where we discuss it and share stories. It's an involved process, but lots of people have had success.
Cold Cap Users Past and Present, to Save Hair
I will be using the Penguin Cold Caps system.
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Rozem - Yes the 1st cancer was Her2+ but it was in 2003 and they weren't doing Herceptin yet for that. I did yhave reconstruction with an implant. I just had some pain in the area and felt and there it was. My stomach dropped like a ton of bricks. It was pretty much in the same area as my first cancer with the same characteristics, which is why they called it a local recurrence. I had micromets in my SNB (4 cells in 1 quadrant) and they didn't do rads either.
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Cheers Dance I will check those links out
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fluff sorry to hear about that
that really stinks!!! I wonder if the same is going to happen with me when I have my procedures? I am going to have to ask my PS? I will be thinking of you Fluff.tonlee so glad your lumps went away!! That was such great news!!!
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Thanks Bucky!
Fluff, good luck on Friday....
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hi ladies
is anyone taking METFORMIN either in a trial or on your own? my hospital currently has a trial running and they said i could participate
any thoughts on this drug? i know the theory is that it lowers your insulin, and insulin feeds cancer. I know this drug is used by diabetics and apparently they have lower rates of cancer (all types) then the rest of the population
opinions please!
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rozem, i'be been taking metformin for a few years now for type 2 diabetes. before chemo, i was taking 2 500mg in the morning and 2 at night. since chemo started and up until today, i can't take the nightly dose because of diarrhea. metformin will do a number on your gastrosystem in terms of diarrhea. personally, i don't know if i'd want to add it to my weakened system. i'm 4 months out from chemo and STILL can't take it at night. it works well for diabetes and it's super cheap, but it's a brutal on your insides!0
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I'm on metformin as well. I take 500 in the morning and 500 right after dinner. I havent had any issues, GI or otherwise. Perhaps it's the lower dosage.
Fluff-- thinking of you this week. I am sure all will go smoothly for you. Hugs!
TonLee --glad things resolved!
I guess we all are constantly looking over our shoulder. : )0 -
I also take 1000 Metformin x 2day. I have diarrhea as a SEs to chemo. but have been taking it for three years for diabetes and have had no issues. And I got BC while on it.
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Just saw my onc today and he asked if I saw the study in the Lancet last week. I'm like "on aspirin"? Yep. He wants me to start on it, too.
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