I'M Scared

[Yvonne38]

Hi everyone
thanks again to everybody who posted a reply to my original post.
I've read a lot of the posts and I understand the Herceptin is a very helpful drug in the fight against breast cancer.
Does the fact that I had my diagnosis and chemo in 2002 make a difference to the affect that the Herceptin will have if I am prescribed it now?
Are there many ladies here who live in the UK because over here Herceptin is a post code lottery drug, depending where you live often depends on whether or not the NHS will prescribe you it. I think the dilemma over here in the UK is that it isn't licenced (I don't think??) as a first line drug ie when the original diagnosis is made but the NHS seem to be getting there!!! This makes me quite angry because I asked my oncologist if I'd been prescribed Herceptin when originally diagnosed in 2002 would I now be sitting here with secondary bc in my bones and he said probably not.
I'm really scared because I had such a difficult time with the chemo when I was diagnosed that even the thought of going back to the chemo ward frightens me and makes me feel sick.(which probably sounds stupid!!) I also have really bad lymphoedema in my right arm so they always have difficulty with finding a vein because they are not supposed to use that arm.
I've also been told I need infusions to strengthen the bone, because the secondary cancer is in my hip and I've just had 2 weeks radiotherapy to try and shrink the tumour. Does anybody know what the drug is likely to be that I will have for the infusions and any side effects??
They did lots of tests and apparently something has also shown up in my lungs but the oncologist said it is so tiny he isn't sure whether it is the cancer or not so he wants to give me another CT scan in 10-12 weeks time.
As I'm sure everybody here can relate to, all of this is very scary for me and there seems to be so much uncertainty as regards my treatment that I feel I am going out of my mind with fear and not knowing which way to turn.
Previously to this secondary diagnosis, I had been complaining of a bad leg for about 18 months and I had a bone scan in february which failed to detect the tumour and it wasn't until 6 weeks ago that they did another scan and it showed up also causing me to have a fracture in my hip! So my confidence in my doctors is a bit low at the moment because it took them so long to run the tests and detect the secondary in my hip.
Sorry for all the moans, but I really am so scared, and I'm so grateful and privileged to be here as a part of this special/inspirational group.
I would appreciate any advice support anybody is able to offer especially if you live in the Uk and have had similar experiences.But any help/advice will be VERY gratefully appreciated!!
Hope to hear back from you soon
much love and hugs to you all as you continue with your journey
Yvonne xx

[CLTann]

Yvone,


We are here to give you support and encouragement. From what you told us, you have metastasis, at least to the bone. Herceptin along with chemo is certainly effective to treat advanced stage of breast cancer. Ask your onc to go for it right away. Don't wait for this test and that test, you need to get on with treatment since you already know that there is spread. The prognosis with the treatment should be good. Don't be afraid, just set the sight and go for it.

Love and hug. You are not alone.

[Sheila]

Yvonne
Sometimes you need to demand treatment...it depends on your onc. Bone mets are very treatable, maybe Herceptin, Zometa & Xeloda.....I would push for a good combo to kick this! Our prayers are with you

[lu ann]

Hi Yvonne,

I had to change treatment centers because I would get nauseated as soon as I walked through door of the place. The nurse had to give me my luchine shots out in the parking lot because I started throwing up. I really liked my doctor, staff, and all the patients, but I just could not go there.

I've been on zometa for bone mets since dx. Feb. 04. That and the various different chemos along with herceptin has kept disease stable.

You've been through alot. We are here to support you.

I am very thankfull that I have good insurance here in the U.S.A. It's not right that some of us have to battle with insurance/government while fighting for our lives.

Blessings, Lu Ann.

[Lolly]

Hi Yvonne; you don't need to apologise for airing your fears here, we've ALL been there.
I do agree with the others, you must just go forward with a treatment soon, as you KNOW you have bone mets; it isn't necessary to wait for the suspicious area in the lung to become more determinate before you start.
The drug Zometa that was mentioned above is a common one used over here to strengthen bones. Xeloda is an oral chemo taken in pill form at home, usually twice daily. There is also Navelbine to consider, it's excellent in combo with Herceptin, having a synergistic effect rather than simply additive. There are others also, and the thing to keep in mind here is that treatment for mets is different than for primary, and in most cases side effects such as the extreme nausea are minimized or even eliminated as the doses are usually given weekly or every 2 weeks and it's just much easier on a person.
If you are a "hard stick", you should consider having a port placed as it makes the whole process so easy you won't believe it. I had my port put in a couple of weeks after my mets diagnosis in 2001, and have had one ever since. My blood draws and everything are done through the port, and it's practically painless. Just google Cathetar Port and you'll get an idea of what they are and how they're used.

Hope this helps, take care,
<3 Lolly

[Lyn]

Hi there and welcome, not under the best circumstances but you will meet a lot of life time friends here.When I first began chemo all the patients had to have a relaxing tablet before they came to the unit, I opted for a valium because the one they recommended lorezepam used to put me unconscious, I think a few of the ladies here also had an antihistamine drug in the drip that just about knocks them unconscioius and they love it, apart from relaxing you it also helps the chemo drugs travel through the body better, why I don't know. I started on the Herceptin 4 years ago, first diagnosed in 1998 with an expectency of 2 to 3 years, so I was just out of the 3 year limit when I started the Herceptin, I do believe that is why I am still alive today to tell about it, I have been in constant treatment since 1998 so I look at this like I just have a chronic disease, in the category of diabeties. I too have a port, almost 5 years now and it has been a blessing. I would ask for herceptin/navelbine/carboplatin and zometa, knock it out before it goes any further, you get to keep your hair with this combo and it can be used later down the track if you have a reoccurence, no we are not oncologists here but like they say, unless you have been there you don't really know, and believe me there is always someone out there that has been there before and we just want to make it easier for the next victim of that demon C. Chemo is like mixing paint, you need the right tint for the best result, so sometimes more in the mix is better. Hope this helps.

LOve & Hugs Lyn