TRIPLE POSITIVE GROUP

Cami, thanks.  I always appreciate your humor and words of wisdom, even though you claim to have none it’s obviously not true.  Yes he was trying to help but all he needed to say is that there was a lot going on with me at the time and it wasn’t my usual MO.  Some people, they find out you have cancer, and all they see is a cancer patient (who is maybe going to die a horrible death soon) and they start to look at you with this pitying look in their eyes.  Most people know better, but I’ve definitely had that.  First time I got my hair colored after chemo – the cold caps people say to wait awhile – I told the hair dresser, who wasn’t my usual hair dresser because she was out sick, she basically needed to be careful with it in thus and such way.  I was there for like 2 ½ hours and the whole dang time, it was like CANCER CANCER CANCER.  I was done with treatment!   I finally had to tell her to stop talking about it.  Then she  called me at home a half hour after I left the salon to apologize.  Aaargh!  I want to talk about it when I want to talk about it, and when I don’t, I don’t, you know?

 It was hilarious that I accidentally stole the sunglasses though.  Sad, but also hilarious.  (Well borrowed kinda b/c the owner got them back.)

Well it was coming out day for me yesterday. Community day in our small town. Every one who hasn't seen me for a year and hadn't heard now knows. I was wearing my hat some of the time for the sun, but basically topless. I kept having to calm people down. I'm ok, really I'm fine. People I didn't know well were disappointed they didn't know and couldn't help. At the end,this woman I really don't know was talking to me and I said I wanted to raise money, to give back, because I'm here, because of research. I felt extremely lucky. She's into fund raising apparently. And wants to set it up for me. I became her cause. In a good way. I was nervous about going, now I feel empowered about doing this fundraiser next month. I still have to figure out where to donate. I don't know if we'll raise a lot but I'll probably have people match it.



Sorry for rambling have a good weekend.

Thank you. Yes I feel for me it's so important to give back. I really needed this woman, she's super organized I guess it's easier to have a fund raiser when there's a current survivor.

Cypher u'r a hoot.

cypher,

There were definitely extenuating circumstances......when I was on chemo, I could not be held responsible for my actions. Give yourself a break - at least she got her glasses back!!

Nicky

For Nicky....





Roche has moved a step closer to EU approval for Kadcyla, its follow-up to breast cancer blockbuster Herceptin, after a positive verdict from the Committee for Medicinal Products for Human Use (CHMP).

The CHMP also gave its blessing to Bayer and Algeta's Xofigo (radium Ra 223 dichloride) for castration-resistant prostate cancer (CRPC ).

In the case of Kadcyla (trastuzumab emtansine), the CHMP recommended its approval for HER2-positive metastatic breast cancer patients who have previously been treated with Herceptin (trastuzumab) and taxane-based chemotherapy.

Kadycla is an antibody-drug conjugate (ADC) that combines the monoclonal antibody in Herceptin with ImmunoGen's DM1, a cytotoxic payload designed to boost its tumour cell-killing power.

http://www.pmlive.com/pharma_news/roches_kadcyla_and_bayers_xofigo_near_eu_approval_505083

Nicky

Sorry I must have missed it. When & why did u stop Herceptin? Mine were suspended because of the EF factors in my heart.

Shasha,

I haven't actually stopped it yet, but on my last visit to my onc (I see him every 6 weeks) he mentioned that I only had 5 herceptin left, including the one that day. I was shocked, but said nothing. I decided to do a bit of research - and ask the ladies here! I wasnt sure if what I has read was relevant to the protocols in France. I knew I'd be seeing him again today so I decided to arm myself with information before raising the subject. I also knew I'd have the results of my pet scan today -and of course that could change everything. I did have some reactions to herceptin, but we've sorted that out with pre meds and running it slower, and EF is good, so no physical reason for stopping it. I'll be back later to let you all know!

Nicky

Nicky J,



You have sooo made my day! Yippee! Now you're headed home carrying GREAT NEWS! YIPPEE!!

So happy for you Nicky!!!

nicky - yay on the stable PET!  On the knee cyst - my DH had a Baker's cyst (fluid filled) in his knee which was from arthritic irritation.  They expected to see torn cartilege (meniscus) when they did arthroscopic surgery but all they saw was arthritis - once they cleaned that up by smoothing things with a tiny little sanding gizmo, he had no further problems with cyst formation.

6cats I'm not any authority here I know tthe least but I thinkI've read when it gets into the 50's the Dr.s keep a watch and sometime u might have a break in taking it until it's upper 50's or better but that's why there are a the tests for it. Some stay about the same and just continue. I know someone else will come in with more infor.

Liz - don't know if it varies by cancer type, but definitely by physician.  Several of us have oncs who like to leave your port in place for a a couple of years in case of an early recurrence due to Her2+ - others had their ports out almost immediately.  I finished Herceptin in Jan. '12 and still have my port.  I don't mind it being there because it is very tiny, but because it is subclavian and right below the collarbone near the hollow of my throat (placed during BMX so no external scar) I am reluctant to remove it because I will have a visible scar regardless of what I wear.  I just go have it flushed every 6 weeks - I also like that because I remain on the radar at my onc's office and find it easier to get things done (report copies, LE sleeve prescriptions, referals, etc.) because the nurses know me. Others can't wait to have theirs out as it helps them to feel done with treatment, other than ongoing hormone therapy. 

Thanks SpecialK..I don't post much but always look forward to seeing what you, Lago and others that post often have to say! I'm glad I have my port as I am not a good stick but I know its there and that seems to bother me for some reason. I've never asked my Onco what his thoughts were on removal time because I just thought about when my last herceptin infusion would be, thus made me wonder about the port. I see where you're coming from on staying on their radar tho. Of course my hope is that none of us ever have to use them again!