newly diagnosed mum

[jeanney]

Hi I have registered this for my mum, she is semi comuter literate and I am helping her, so I hope she will post after this on her own. She has been diagnosed 2cm (clear margin), grade 3, her2, er/pr -, 4/21 lymph nodes. Has not yet started chemo (epiduremine and cfx {spelling}) she will then take Toxol and Herceptin, but there is a problem with funding so we might have to pay.

Is it any better is you have alot of nodes ro begin with? I was thinking that the cancerous cells would have to travel further to get into other parts of the body. Does anyone have a similar diagnosis to my mum. Does this programmme suggested by ONC sound ok?

Both myself my brother and my sister (16) very scared.

[kristen]

Hi Jeanney,

Your mom sounds very similar to my dx. I was dx'd 2 yrs ago with grade III Her2+++, er/pr- with 3/12 + nodes. I had a MRM and was put on a study back then for Herceptin. The arm I drew was the Carboplatin, Taxotere, Herceptin. I had 6 treatments and then 1 year of Herceptin. I opted for radiation, where I think your mom is over the fence. I was told 3, no, 4 yes. I had a consultation with my rad. onc. and we both felt that I was in good shape and I wanted to do everything this round to stop it. So I had 30 days of being "zapped". I am here to tell you that I am NED. I actually go in tomorrow for my last 3 month check up and then will start seeing my onc. every 6 months.

This is a very scary thing that not only your mom will go through but you, her loved ones will help her through. I applaud you for finding a web-site that can help you and her along the way. It is a long journey, but now being 2 years out, it seems like a life time ago, (at times).

The chemo combo is one that a lot of women get. Others get Adrimycian and Cytoxan and then Taxol, with Herceptin. No one really knows the "best" combo right now. The studies are just coming in with the Herceptin helping us first timers. 2 years ago this was only given to Met. patients. Things happen very fast here. If your mom is a bit nervous about it all, tell her never to feel bad about getting a second opinion. Most women do. Tell her to specifically ask about the side effects short and long term. Every women is going to experience chemo differently. I had it pretty good, while I hurt like crazy, I never threw up and the mouth sores were minimal.
There are other things to take into consideration. The pre-meds and how they will effect your mom. Most of us had to take Decadron. Which is a steriod to help with any possible reactions. It leaves a lot of us hyper.
It's very hard to prepare someone for chemo, because we do all experience it differently. The best advice is to drink lots of water. My surgeon told me, It doesn't matter how long it's in there, so just pee it out. I took a 64 oz. jug of water and drank the whole thing, it took me all day, but I got it out.
The nurses at my infusion suite, were the best. They were always making sure you felt okay. Did I need anything. With some of the chemo, like Herceptin I would get cold, they would give me a hot pack and the best place to put it was between your legs and it warmed up my whole body. They have seen it all and will help you along the way. There are so many things they can help you with to ease ANY side effects that it's amazing. They want you comfortable. They dont' want you uncomfortable any more then you do.
About the nodes. The less the nodes the better. With the cancer having spread to the nodes your mom does have a chance of having it spread to other parts of the body. The most likely spots are lung, liver and bone and brain. I am sure they will check those out before proceeding with chemo. They will stage your mom, we are all staged.
About having to pay for this yourself. Look into the American Cancer Society and Genentech, I believe they can help you with some of the costs. Genentech is the maker of Herceptin. There are resources out there. So don't put a second mortgage on the house! You may want to put up a seperate post for help with costs for chemo and I am sure there are people out there who could point you in the right direction.

It's a battle, but won that can be won! Hang in there and if you have more questions please post. I am sure I forgot something and other posts will follow. My best to you and your mom and the rest of your family. Stick close, talk, and God Bless.

[kristen]

Jeanney,

Sorry, Just getting my caffine intake. About getting some financial help, post financial help in the UK. We have a lot of visitors from there. Somebody maybe able to help you get some! I don't personally know of Genentech's policy for the UK, but it's worth looking into.

[jeanney]

We do live in the UK and you might have heard about the problems in funding herceptin. I am so happy that you responded. I will show this to my mum, I'm sure she will be delighted to read about someone in a similar position to herself. I am really thankfull that you have taken the time to put some perspective on her situation.

[Christine MH-UK]

Hi Jeanney

I think that your mum may be on epirubicin + cyclophosphamide followed by taxol + herceptin. If so, this is about as good a combination as anyone in the UK seems to have gotten, so she seems to be in good hands.

I actually had a worse prognosis than your mum, since I had EC-type chemo before surgery and still had 8 lymph nodes involved and so I got taxol after surgery. I never had herceptin-based chemo, which is now known to be more effective. I was diagnosed two years ago and still o.k. I have been on self-funded herceptin by itself for a few months now to prevent recurrence.

Has your mum applied to the PCT to have her herceptin funded? The government seems to be moving on this, so with any luck your mother won't have to fund a full year.

As for self-funding, the cost of herceptin jumps dramatically at 50kg and 75kg, so it is important to try to avoid gaining weight and ending up over these amounts if possible. Especially with taxanes, the steroids cause fantastic hunger and so it is best not to have too many biscuits lying about when on them.

Best of luck,
Christine

[jeanney]

What is PCT? The hospital seem to be stalling about herceptin, we are prepared for a legal battle if necessary. I am glad to hear you are doing well. I am wondering if the doctors will eventually discover that women should take herceptin permanently/indefinalty

[Christine MH-UK]

They are the ones who determine whether somebody gets herceptin funded on the NHS or not. Your mum may want to post in the breastcancercare.org.uk chatroom on this, since there are quite a few women who post there who have applied to their PCTs for herceptin.

My oncologist even recently submitted a request to the PCT on my behalf, which was very nice.

Best wishes,
Christine MH