TRIPLE POSITIVE GROUP
Comments
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goutlaw I'm with Pat see if you can get it weekly because the SE are supposed to be less. You will be getting over all the same dose over the same period of time but instead of one big dense dose every 3 weeks you'll get 1/3 of the dose every week. Many people do get it this way but I think it's easier for everyone if you only have to get it once every 3 in terms of time… if you're there anyway then it's no skin off your back.
1 more thing. It's just as effective if not more so since you will have the chemo at a more consistent level in your body all the time to kill any buggers that might have got away
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ok Ill have to call Tuesday and ask....
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Goutlaw, when I started chemo I asked some questions of my MO in writing, and got his responses in writing. One of my questions was "Is the dosage one-third of what it would be if I were receiving taxol every three weeks instead of every week? if not, why not?". His response was "No it is not...because it is too toxic to give 240 mg/m2 every 3 weeks. This is probably why it's more effective to give it weekly.". (The weekly dose of taxol is 80 mg/m2.). So - he didn't say what the 3-weekly dose is, but it is less than 3 times the weekly dose.
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o yea def. gonna call her Tuesday and get it switched....pain and feel extreme fatgiue couldn't get out of bed all day....But yes that makes sense about toxic etc....I preferred weekly but she didnt give me option...so ok Thxs for Ur help
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Ladies: For my last few runs, I've put on my sleeve and it is hot with it on,BUT it is working. My arm pain is gone. I'm still trying to get into an LE massage therapist so I make sure I'm doing things correct.
Hope everyone is enjoying the Labor Day weekend.
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Arlene, so glad its working.
Goutlaw,.I hope the weekly dose helps you. Much love.0 -
Good news for those who follow ....
Subcutaneous herceptin...
"9/2/2013 2:04 AM ET
Biopharmaceutical company Halozyme Therapeutics, Inc. (HALO: Quote) Monday said that the European Commission has granted Swiss pharmaceutical giant Roche Holding AG (RHHBY.PK) European Union marketing authorization for the use of a time-saving subcutaneous formulation of Herceptin (trastuzumab) for treating HER2-positive breast cancer."
http://www.rttnews.com/2181501/halozyme-roche-gets-eu-marketing-approval-for-breast-cancer-drug-herceptin-sc.aspx?type=fdp0 -
ArleneA I wear my sleeve daily especially when I work out and when it's hot. I have never had cellulitis, Haven't been to PT since fall of 2011 and my arm hasn't swelled. It also feels better with it on. You do get used to it even on the hot days but it will take some time.
I don't sit in the sun but I do get outside. My LE arm looks albino since it hasn't seen the sun in 3 years.
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pbrain - I understand! I so hope the Florastor works for you. I just recently was diagnosed with c-diff - yep...the dreaded c-diff. This was after a course of antibiotics for another issue...so I full well understand your symptoms. Ugggghhhh!!!!!
I finished a course of Flagyl for the cdiff this past Thursday (didn't get the culture back til Wed, but had started Flagyl "just in case" b/c my doc didn't want to mess around - so glad she was on it!). As soon as I got the official diagnosis I started Dr. Google (had restrained myself prior to that, which for those of you who know me, that is huge progress, LOL).
My research led me to start taking Florastor and DanActive twice daily each on Friday afternoon. I was scared b/c Thurs eve/Friday day after stopping Flagyl my sx seemed to be coming back (recurrence is very high with c-diff). Well, after my first dose of Florastor my stomach settled considerably. Still not 100% normal (and you may find a bit more gassy with the Florastor), but MUCH improved. No more urgency or stomach cramping. Fingers crossed that it keeps me from having a recurrence. First 3 weeks is highest risk. 4 days clear so far...
P.S. There are a few rare cases of fungicemia related to Florastor use, but these are in immunocomprised patients. So anyone who has a low white count may want to think twice before trying it. For me, the c-diff recurrence risk was WAY higher, plus my white count is fine now (I'm over a year out from chemo).
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Thank you a million times for all of the info Dance. I'm so hoping I can get this resolved. I am always highly aware of where the bathrooms are now. I go into the grocery store and tell myself "over to the left, in the back..."
Ashla, I still crack up over your comment "remember when we used to talk about boys?" Ha ha ha!!
Gout, look into milkweed. It supposedly helps with chemo pain.
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Moni, I also have Kaiser, and that’s not what they did for me, but my diagnosis was a little different. You know she can get a second opinion, even within Kaiser. Even if the 2nd person agrees, maybe you’ll get a better explanation than that. I had a SNB though I didn’t have any enlarged lymph nodes and mine were clear of any cancer. I also got a lumpectomy (they said it was up to me, I could do either that or MX), and I got an MRI. I felt like I had to lobby for it though that may have just been my perception. It’s medically necessary especially when breasts are dense and so mammos are hard to read. She just needs to be a lot squeakier, at least that was my experience. I don’t know where your sister is though. I don’t know what occult BC is?
Congratulations Lago! I look forward to seeing your NED posts at year 5, 10, etc etc.
Moon, Cami -- sorry you’re having such a hard time lately. ((hugs))
Lago, I don’t think that your name for that chair can be improved upon. Shittin’ pretty – hilarious!
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Lago...congrats on three years! Add another 0 to that number and we will be good. I am seriously thining about getting that phone cover for my PS. That is hysterical.
goutlaw....I did weekly and had little to no problem with pain. I was on a mild dose of cymbalta, so that could have helped also.
Moni...I would change surgeons. There is a huge back story on how I was diagnosis and referred, but ultimately my first biopsy was done by a general surgeon who said 50% of his surgeries were for bc. First, he went in on from a location that is visible. Second, he told me the only thing that showed was LCIS tissue and to take tamoxifen and get a followup mammogram in six months. My bff is a nurse practitioner who jumped in and hauled me to breast specialists. Finally had an mri...and subsequent bopsies that got to the location needed. Had I gone with the initial disgnosis, and waited six months, it could have been far worse.
And even though I chose a BMX, i would ask why the surgeon automatically pushed for a mastectomy with ANLD without even doing the MRI or knowing the main details.
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Hello all!
Cypher- She is in Sacramento. Yes, we did ask the BC navigator for a referral to two other surgeons located in N.Ca. Occult BC is without a primary tumor located. We are hoping that the MRi is able to pick it up. She was dx'd through an enlarged node and because of that, she falls out of the Z0011 parameters. I guess at the tumor board, everyone agreed the ALND was necessary. MRM if the tumor is not located. She is not happy about this. However, the 2nd surgeon has a breast conserving reputation. We'll see. Meeting with the MO on wed.
Flufqueen- yeah, I was thinking the same "cart before the horse", but he did want to see what she wanted and if it was to be a MX, then the rest of the testing could be forgone.
Glad my surgeon was a "thinking out of the box' guy, and agreed to removal only the enlarged node!
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Hi everyone. I haven't read all the pages since I was here last (I think there are 15 new pages since then) but wanted to check in.
Tomorrow is the 25th day of rads. I've developed an annoying sore throat/lump feeling on the left side which is making me nervous but I've had a weird ear/eustachian tube/tongue thing going on since about 2/3 of the way through chemo so I guess I shouldn't be surprised that radiation seems to be exacerbating it. I think chemo/rads hits our bodies hardest in places where we might have previous weaknesses (I've always had this weird ear thing at various times throughout the years).
I'm in the process of researching oncologists in the Phoenix area as it looks like we'll probably be there before all these treatments wrap up (i.e. Herceptin). I may need to go in and shake hands with the new oncologist and say "hook me up, please" because if all goes as scheduled we'll have only been there two or three days when it's time for Herceptin #15. It makes me nervous switching midstream but driving six hours to and from Los Angeles for an hour of Herceptin doesn't make a lot of sense.
I hope everyone is feeling good and doing well! Once things settle down I hope to get back to keeping up with this thread on a regular basis. There are so many great information-gatherers here (and information givers!).
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LeeA One of my friends, once finished with chemo did her her Herceptin at home administered by a nurse. I'm sure the new onc will be great.
thanks fluff
moni731 are they taking all 3 levels of nodes or just the first level… and if they see more issues then more?
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moni - just to put in my 2 cents - I had no enlarged nodes, and nothing showed up on my pre-surgical MRI, but I had two cancerous nodes that were separated from each other and the sentinel was the smaller one, the other one further up was 6mm. This came as a complete surprise to my surgeon as there was no indication I had cancer in the nodes - including the first look at the SNB in the operating room which was declared negative. My nodes were subsequently removed in a separate ALND surgery 5 weeks after BMX. I don't image well, mammogram missed the 2cm lump of IDC and the additional DCIS, the DCIS was not seen on US but the IDC was, and the MRI missed the ADH and ALH in the "prophy" breast that was found at post-op pathology.
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Hello to all . Im also triple positive , just finished 4 x AC starting Taxol + Herceptin on the 15th Sept. really scared.
Ive tried to read all posts but just couldnt do it .
Im glad to be amongst you ladies and hoping for guidance and imput as i am so overwhelmed can not think clearly
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Talked to oncologoist about going to taxol weekly but she says no....Bc I need surgery soon CANT wait until next year and said no matter weekly or biweekly its just as effective and still going to have side effects no matter what! Gonna print out the 2013 study I found but Im not gonna argue....I also saw ppl get herceptin weekly? Plus this doctor dont want to give me bilateral and I argue I want bilateral....God I think Im gonna go ask family doctor to write fax for second opinion to fox chase before Im dead!
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CANT they tell by mammo or biospy report or mrii how much is DCIS and how much is invasive?
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Momx2 I think u've come to the right post for info and comfort, but I didn't quite understand, OK u finished 4 chemo treatments and will start herc. 9/15? Then what is the plan? It doesn't sound like u had an operation yet. I know this is a confusing time and a time when u really are spinning but please explain more of what is going on, MRI etc. OK
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Hi all!
Lago- by just 15 nodes I am assuming the first level. He did not mention anything further for now. THe US did not show any further enlargement to any other nodes. But the one dx'd with is 2 cm.
SpecialK- we've discussed that there may be more cancer. She has very fribrocystic breasts and they have said she would have bilateral biopsies with the MRI, because of fribroadenomas that they were pretty sure about. But, if they can't locate the primary, they are going to need to do a lot of others. She's okay with that.
She may very well give up and just do the BMX they are pushing for, but she is very afraid of lymphedema as this is the left side and she is left handed and very active. Seeing the MO tomorrow for her opinion. On the pathology report she got, there was no grade listed, so another question. She is ER+,PR-,HER2-. By all my reading, this should not be a very aggressive cancer.
Thanks to all. Congrats to everyone on their milestones! Moni
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Camillegal , I had left breast core biopsy followed by lumpectomy with 2 re excisions . I had multiple IDC and large area with DCIS didnt show on US or MRI except for one .
After chemo will have bilateral mx , thats what i wanted from get go but drs insisted will get clear margins , not .
My largest tumor was 1.5 cm two others 5mm n 8 mm , I have mixed cancers cells oncotype came back 9 for 90% of tumor and her2- and 10 % of tumor was 28 and her2+++.0 -
Moni ....I dont think just estrogen positive is aggressive....but it all depends on shape, etc....to determine the grade....and in older women usually not aggressive
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I wanted to go to SKMH but thought I would just be a number , having tx at Columbia Presb and believe Im just a number .
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Momx2 I'm sorry I don't know anything about cancer, but I wanted the others to read all of this so they could really get into it for u and can help u sort this out. I do think however getting an Mx is the best way to go and it could be u'r ins. didn't allow it the first time around, now they would cuz of cirumstances and I do know that the operation is painless (pretty much) u went thru mor with the other one and once they clean everything up u will be good to go for whatever other pan they might have, because of the new circumstances can u have both taken if u wanted to? Now remember I'm not good at this (knowing) but taking one is lopsided and u feel it that way sometimes, depending on u'r size. Just my thinking, but really someone else will come on and explain alot to u. Of course u feel like what's happening they are changing the game plan for u and makes u feel very out of control. So just keep on checking this site.
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Bilateral mastectomy , is what im going to have done once tx complete or midway .
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Momx2 this is a very busy thread so really when the girls start coming home from work they get on with so much knowledge and how to get answers u will be happy u came here. I'm sorry u have to be here at all.
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Welcome mom2. Sorry too.
In mixed BC, they usually treat the most agressive cancer, therefore your Her2 is the more aggressive one, so that's what they go after. And with Herceptin and Hormonal treatment, you have a good tx plan. Much love.0 -
Mom, sounds like you have a good plan going. Do your best not to feel like a number. My MO told me that if I saw him after the first few consults during treatment, that would be bad. And I did see him a lot when I ended up in the hospital with neutropenic fever after my first chemo of TCH. After that I got weekly taxol with herceptin, and while it was no picnic, it was so much better than TCH :-) I grew to dependent on my nurses for info and I had a consult with a nurse practitioner at each treatment. So I was glad to be a number at that point! You'll do just fine because you probably only have 4 treatments with that, right? I had 12.
The BMX is a smart thing to do. Keep posting and let us know how you are doing.
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And Gout, I think you should try to get into Fox Chase. Now. This is your health and I don't understand why your MO won't let you have weekly taxol at this point. I think just the extra doses of herceptin helps a lot! Keep us posted. BTW, I'm from Philly, did my schooling at Medical College of PA. I miss it there.
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