TRIPLE POSITIVE GROUP

Thanks to all of you for your good wishes and positive notes about very little pain post surgery.  That really encourages me.  I determined to make this a positive weekend and to enjoy each minute of each day.  So far, my weekend has been wonderful and now my daughter is here with my five month old granddaughter.  Babies can just take you out of yourself.

Love and hugs to all of you.

Honeybair,

Thinking of you today and hoping all goes well

Nicky

Hi Sasha...

Great that you finished rads. Unlike most of the ladies, rads was my low point and I hit a wall right after rads. My breast did fine but I was abolutely wiped out with exhaustion and even depressed. Took at least a few weeks to bounce back.

Hope you get that EF up there. It still amazes me that we can experience these EF drops and not notice anything.

BethCon,

I didn't know you knew it was in your spine. I thought you were fighting with your ins co for the PET scan. Did I miss something? So, so sorry to hear....best wishes today....

Bethcon,

Didn't know either that you knew it was in your spine. Hope too that its only one spot. Come back and tell us how you get on.



Me, I'm heading to see my GP in an hour. Trying to reduce the pain meds wasn't actually such a good idea!!😔 At least I tried, and I know I can up the dose to get a level that works. Pet scan is now organized for 19th sept too. Don't think I'll be hearing any bad news, but getting anxious all the same.

I posted on the stage IV forum, but I wanted to let you all know what's going on too. When I saw my onco last Tuesday, he shocked me by saying that I only had 5 3 weekly rounds of herceptin left. As I had understood it, being stage IV her+++ I would be on herceptin for as long as it was effective! I asked if this meant I'd just be in tamoxifen and he said yes. Hmmm..... I've since done some checking to see if the protocol in France is different to elsewhere, but no, stage IV = herceptin for the duration. I've being seeing my onco for 1 year (its my 1 year cancerversary ) and up until now I've never had a reason to dispute a point of treatment with him. Hoping he's going to listen to me when I tell him there's no way I'm ready to stop herceptin.

I'll be asking my GP her opinion today too. It's not her area of expertise, but she knows me well and can at least advise me. Keep all your fingers crossed!



Nicky

Bethcon we all hope the best for u today.

Honeybair and can't wait til we hear from u.

Nicky I thught being on Herceptin is a year process so far, sometime Drs. are backing off because of heart issues with to much H maybe that's the way it's thought of???? I'm older and I now have a small amount if damage to my heart but it could be age or alot of H. The Card really couldn't say cuz he compared all my heart things and it like just happened.But no wy can H be blamed except it has caused some women some heart problems, but I really don;t know anything so don't go by me.

I told u all about my operation for my organs that have moved all over the place, mycolon is going rogue and pushing my organs into my ribs--well the reason I'm retelling u is my sister is driving me crazy (crazier). Since there is pain involved and no operation wil be taking place she's bothering the hell out of me. What can we do? she's saying--my answer nit much --shut-up. 2 Drs. said the risk is worse than what's going on so now that everything is all over the place I still have the flying organdas inside and I told my sister I just have to live with it. She's all upset. hahaha My brothers and my sister and their spouses and me alone went to a fabulous brunch yesterday--And she wanted to wait on me--LOL she's got Stage IV  and she wants to wait on me--Of course I wuldn't let her but we did come to a conclusion I think I'll need a cane-I've been ptting it off but maybe it's time. There is an upside if I get mad at anyone I can slam them with my cane and say oops I'm trying to get used to it.

 camillegal My mom resisted a cane for years. When I finally bought her 2 for mother's day (much nicer looking and the handle was better for her arthritis) she changed her mind. They were beautiful and became an accessory for her. One of them was fold up so she could take it traveling.

I'm not at my home computer right now but if you are interested I can send you the link… yup I bought them online. Just note that the color will probably be a little darker in person.

Wish your organs would stop being hobos and find a home. Do they know why they are doing this?

NickyJ I don't know how things work in France but can you go see a different onc to get another opinion? Is it possible your onc said you would be going  off it by mistake? Is the drugs Kadcyla and or Tyverb  available there?

Ashla,

Thanks for that, and any information I can arm myself with would be helpful. Spoke to my GP, she obviously doesn't know a lot about it but she's going to look into it. She also said that after I speak to my onc, if I'm not happy, she'll talk to him for me. So that's good!



Camille,

I do understand that herceptin can can heart issues, but up until now I haven't had any, and I'm monitored after every 4 cycles. Maybe my onco is worried about this, but if that's his reason for stopping he didn't say.

Love the pic! And by the way I'm with Iago - if you have to get a cane do it in style!



Rozem,

Thanks for the address, I'll be checking it out!



Iago,

I'm not actually sure how I can go about getting a second opinion, this is the first time I've had an issue with my onco. Will be checking it out though if I have to.



One other thing I did was I rang the English speaking branch of the cancer society here in France. (The French speaking society just didn't work for me - the first day I went, I was told "oh you're NED after your chemo - you'll be fine then, its gone!" )Eh, no!!!!

I spoke to someone there, explained that what I was looking for was information on the protocols here for stage IV. I'll be talking to someone again tomorrow, they said they'll look up the information for me and send it on.

Anyway, besides that, alls well! Got my meds sorted out, had a lovely walk and now I'm just about to eat a barbecue dinner. Life's not all bad!!

Nicky

flyjune - Dr. Slamon, the doc who brought Herceptin to the market, is at UCLA.  City of Hope and UCLA are both NCI designated cancer centers, but Cedars is not.  I am a native Los Angeleno and one thing to consider is where you will be coming from, in relation to the location of these centers, and the realities of traffic in L.A.!

Lago and Moon thank u so much---I have seen them in person at Walgreens and CVS so of course my eyes went to the dazzling ones so I can get them here pretty easily. But thanks for the push. It makes me feel better.

And moon when I saw the pics of my organs--cuz I do know where everything goes--I started laughing so hard cuz the colon looks like a big vine that's growing and my liver is pushe up and over and I said How am I surviving this and the Dr. say well it does happen to some people hahaha and I thought it had some pictuesque value, I really don't know howoften people get this but one of the nurses said they should do some kind of paper on you. If that doesn't scare u And I said I don't care as long as I could do the talking.  Oh when the Christmas time comes i can get a candy cane. See I'm thinkin'

Moon talk about avatars--my computer doesn't show me any anymore --is it just my comp. I don't know what I did to take them all away--I just see the name and usual info.

Honey, I'm so sorry for scaring you--temporary tylenol use is a-ok.  It is bad on a chronic dosing schedule.  I don't take it at all because I drink wine, so it scares the crap outta me.  Wishing you much comfort with your surgery!

Pbrain, now you're scaring me. :-(. I've been taking Tylenol arthritis for years - 650 mg 3 times a day. It was suggested to me by a rheumatologist as the "least harmful" thing to try for my arthritis. If it didn't work I should graduate to ibuprofen, followed by other things up to and including prescription painkillers. The Tylenol has worked fairly well all this time. My liver function has been fine. If it starts going bad, would it at least be a gradual thing?

My oncologist has me on Herceptin and Perjeta every 3 weeks with Zometa mixed in every 3 months.  She said that H & P work well together to surround the Her2 cells (I kind of picture them not letting the cancer into the cells - kinda like sperm trying to get into an egg!).  She says I will be on them "as long as they work".  I get a echocardiogram every 4 months to check on my heart, but so far everything is great and some bone cancers now show up as dead or dying - not active!!  I take my Arimedex tablet every day too to help the estrogen+ cells! I will do what ever it takes to stay healthy and active!