Hi there I'm new here

Yvonne38 · 10-31-2005, 06:44 AM

Hi everybody my name is Yvonne and I have just been diagnosed with secondary breast cancer in my hip and consequently have just received 2 weeks radiotherapy on my hip bone and pelvic area.I was first diagnosed with breast cancer in January 2002 at the age of 35. The reason why I have joined this forum and am posting is that my doctors now want to put me on the drug Herceptin. I am really worried about what side effects I may experience especially to do with my heart and I would appreciate any information off anybody who is on Herceptin or has been on it.I was given a prognosis or 2 to 5 years which obviously has really distressed me and that is WITH treatment. Has anybody else been given a similar diagnosis and found that they are surviving well beyond that??
I just would appreciate any help and advice anybody can give because I am only 38 years old and I don't know anybody else in a similar situation.
Hope to hear from you soon.
Regards
Yvonne

Cathya · 10-31-2005, 07:43 AM

Hi Yvonne; I am sure you will get lots of encouragement to take herceptin here. I find that other than a runny nose I don't really have any reaction to it. My heart is tested regularly but I am extremely happy to be on herceptin and hope to stay on it indefinitely. I will always remember my onc telling me that "herceptin changes everything" for me. Read other strings in this site and you will get lots of ideas about additional potential treatment which will give you lots of hope. I am looking into vaccine trials because of this site for instance. All my best.

Cathy

Cindi · 10-31-2005, 10:56 AM

Yvonne,

I sincerely HOPE that you will give Herceptin a try. I have been on Herceptin for about 4 years now and my heart function remains intact (I was age 40 when dx in 4/02). The runny nose is the only side effect that is noticeable (I just always mention to others when I reach a tissue, how my allergies are really acting up!).

Read the stories of so many of these women on this site. They will inspire you. Many women are living longer and longer with this disease. Many times the chemo you will receive can put you into long term remission. No one really knows, just the man upstairs. Remember you are unique, not a statistic to be lumped together in the bland statement of "2 to 5 years". There are soooo many new drugs in the pipeline that will help us all to "manage" this disease and soon to treat it as a chronic disease (like diabetes), if not cure it completely. Again, we have to have faith.

Hang in there. I am so happy that you came to this website. Herceptin is a wonderful drug option. Again, I HOPE that you will add it to your treatment regiment.

God Bless,
Cindi.

StephN · 10-31-2005, 11:03 AM

Hi and welcome to the forum.
There are many of us here who have been in an ongoing fight with their cancer for years. Herceptin is big part of why we are all still here.

I, for one, was given a high probablilty of lasting "a year at the outside" and that was in Jan. of 2002. Mainly due to raging liver mets that were likely to spread, but an aggressive chemo cocktail topped in their tracks. This was in combination with Herceptin, and the drugs were very synergistic and worked for me. Now almost 4 years later I am free of active disease and have been off chemo for over 3 years. I still get my herceptin every three weeks like clockwork. I am 56 and my heart is fine, even with all the "bad" chemos I have been on.

Has your doctor mentioned putting you on anything like Zometa?? This is a drug that helps strengthen your bones and fights bone mets. I have been on it for over three years. Now I only take it only every 12 weeks. But all the chemo I had was hard on my bones and I had a lot of bone loss plus evidence of bone mets in my legs. Zometa is in a class of drugs call "biphosphanates." Not sure if it is better to be postmenopausal to take this, but it is worth asking into.

Wanted to add that many of us who are "not supposed to be here anymore" are writing new sets of statistics for survival that are not factored in when the docs give us our "chances." All the new clinical trials data is just coming in that include Herceptin. Your med onc is scaring you with unfounded guesstimates - so be like us - write your own statistic to the new chapter of Surviving Cancer!

Sandy H · 10-31-2005, 02:53 PM

Don't get hung up on the stats! The doctors do not know how long any of us will live. Steph is correct in saying many are living longer and living well. I am one of those. With inflammatory breast cancer, Her2 positive, and with 44 postive nodes, I was given maybe, 2 years if I was lucky and chemo worked. With IBC most chemo's do not work or I think it is more of getting the right combo soon enough because IBC is so aggressive. Anyway, it has been 4 1/2 years for me and I am doing well. Keep the faith. hugs, Sandy

Daile · 10-31-2005, 04:51 PM

Hi Yvonne,

Like you I too was diagnosed with BC in my early 30's. I have learnt though even though I am on the young side of developing BC, there really is no easy age to come to terms with or deal with the beast.

When I was first diagnosed my onc told me that it was highly likely that the cancer would return in a more aggressive form, if it was not already still present after then finishing chemo. My cancer was stage ll with high levels of the protein HER2.

My prognosies is '...no guarantees, just don't know.' At times I have felt quite abandoned and unsure as to what this means, but have come the conclusion that it doesn't really matter what the stats say as know one can really tell me which side of those stats i will be on.

Recently I decided to take up the opportunity to start the Herceptin drug. After being very sick with the chemo i was quite apprehensive about going back to that room for treatment. I have now had two Herceptin treatments and have been very pleased with the how i feel within myself. The only side effect is I get these funny skin bloches on my chest and back area that come up quite scarlett 24hrs after treatment then fade to almost skin area colour over the next three days. These bloches are not hot or itchy just odd.

In a couple of days i will have my third treatment which i am a little concerned with as i have just had B reconstuctive surgery a few days ago so don't like the idea of all those other drugs still in my body.

My personnal philosophy is that... many moments in time have past to create, develop and record for my playing enjoyment of beautiful memories. Today this moment I have, and with this moment I choose to create another special moment in time.

Every night I thank god for the day I have had, and in the morning I thank him for the brightness of a new day.

Wishing you many sunny bright days Yvonne.

Daile

TriciaK · 10-31-2005, 06:39 PM

Dear Yvonne, Let me add my welcome to all the rest. You are in the right place! The women on this site are all fighters, and their stories are remarkable. You can look back over several years entries, and be inspired and encouraged. I have been fighting breast cancer for 20 years, and I don't intend to give up fighting. I don't know if my first two rounds in 1985 and 1990 were her2 (I doubt it), but my last mets to the lungs were discovered in July, 2004, and were her2. As you may read elsewhere in my posts, I had a heart attack in June '04 and when the drs did a CT scan in preparation for heart surgery, which was never done, the lung mets were discovered. My oncologist said if they hadn't discovered the mets when they did I would have had about 3 months to live. He put me on navelbine, herceptin, and femara for 6 months, and then dropped the navelbine, and I will continue on herceptin and femara indefinitely. Even though I had had a heart attack I didn't hesitate to try herceptin, and I believe it is a miracle infusion. My MUGA scan in May showed my heart at 58%, normal. I will have a check up at least every 3 months, and am scheduled for an echocardiogram in a week. I have herceptin with zometa every 3 weeks. My last PET scan in August showed No Evidence of Metastatic Cancer!!! My oncologist said when we started the chemo that I might have 6 months, then later he said a year. After we saw the PET scan he said "It looks like you've dodged the bullet one more time". I told him to think more like a minimum of 5 years. Since I am 75 now, I think at least 5 years is likely and I'm going to keep fighting for more ! No one can tell you for sure how long you have! All they can do is quote general statistics. This is a new ball game for BC because of herceptin, and herceptin may do for BC what insulin does for diabetes, make it a chronic treatable disease controlled by herceptin, diet changes, and a lot of faith and determination. I've said it before: faith and fear cannot co-exist! Do all you can to overcome the fear! This site will help, and we are all here for you. Hugs, Tricia

lu ann · 10-31-2005, 08:38 PM

Dear Yvonne, You came to the right place for info and support. I was dx. with stage 1, 14 years ago and thought I had it beat until Feb. 04 when I was dx. with bone mets. I didn't think I would live 6 months, but it has been 21 months and I'm still here. Having faith and fighting fear are the tools that I use to deal with this. I have not asked any of my doctors my prognosis, because they can only guess and it would cause me more anxiety then it's worth. Since being dx. I have known more people who died of other causes then cancer. Take care and God Bless You. Lu Ann.

10-31-2005, 10:10 PM

Hello. You came to the right place for encouragement! I was diagnosed in 5/00 at the age of 31 and one surgeon felt I would live only 18 mos.. Well here I am. My body remains w/o cancer but I have had brain mets 3 times. I take Herceptin every three weeks to help keep my body clear of the cancer the brain is a bit more tricky.

Another thing is any doctor who discourages you-move on. Did you ask the doctor or did he volunteer how long he expected you to live. Nobody knows until we are close to death. Everybody does eventually die. I look for a docot who feels that we are a team and we will fight this together.

Yvonne38 · 11-01-2005, 03:25 PM

Hi
I would like to thank you all who have replied to my post. Your replies have been very comforting and encouraging to me because as I am sure everybody here in this group can relate to I am feeling very frightened and fragile right now.
I next see my oncologist on the 14th and I have decided that I will accept the treatment Herceptin because I feel very fortunate and blessed to be given the opportunity because over here in the UK it is seen as the 'postcode lottery drug' (depending where you live, depends on whether you are prescribed it!!) and there are a lot of women 'fighting' for the right to be prescribed it!!
Are there many people in this group who actually live in the UK??
I still feel really scared but 'not so alone' now that I have found this friendly and safe place to be. You are all an inspiration to me and I hope that like so many of you here, I also go on to prove the docs wrong in their prognosis. Like you say, we are all different so how can they say how long etc??
I know when I see the oncologist on the 14th there are questions I want to ask and would appreciate any others that you may be able to come up with.
I am very fortunate to have found you all and I don't feel so alone on this frightening journey.
I hope that I am able to be a source of support for you all here, just as I also find you all a massive strength/support to me.
Thank you again for all your advice.
Love and hugs
Yvonne

Lyn · 11-02-2005, 02:07 AM

Hi Yvonne, and welcome, I have been on Herceptin for 4 years, also give 2-3 years at best, that was 1998. In 2003 I had heart failure in 3 valves from thyroid treatment of all things, my left ventricle was the only part of my heart that was healthy. The first thing my onc said to me when I wanted Herceptin was that it was dangerous for the heart, not so if it is monitored my Echos regularly, then if there is a problem a short break off it usually restores the function to above 50%. I believe the Hercptin has slowed the spread of my cancer, not cured it yet but gave it a good belting, I deal with lymph and skin involvement and at the moment it is in my remaining breast but not in an agressive form. Hope this helps, the is the insulin of the future for cancer victims.

Love & Hugs Lyn.

Maggie · 01-12-2006, 04:28 PM

Hi Yvonne,

I'm glad you found this board and it has been helpful to you. I had my 3rd Herceptin yesterday and I've had no problems. I did see here about a runny nose and I've had this lately, so I was glad to read about it.
I am early stage BC and was just approved for it in November. I had been counting the days and pestering my Oncologist!

I'm on every three weeks for a year.... Please post back and let us know how your doing.

Maggie

LisaJ · 01-13-2006, 12:57 PM

Hi Yvonne. I am so sorry to hear about your diagnosis, but keep fighting!! I am 36 years old and I was recently diagnosed with Stage IIIA. When my surgeon called to tell me about the results, he told me I was a candidate for the "WONDER" Drug Herceptin. It gives us another ammunition towards this disease.
All of the women on this website our inspirations to me and will be to you as well. The are an amazing support. Keep fighting and follow your heart!

Lisa

Lolly · 01-13-2006, 01:54 PM

Hi Yvonne; I'm glad you're feeling a bit better about things, and really glad you've decided to give Herceptin a try. I've been on Herceptin plus/minus chemo since January 2001 for Stage IV mets to regional and distant nodes. So I'm going into my 5th year since being diagnoses Stage IV, and going STRONG. Excellent quality of life, no major side effects, and my heart is doing ok. Like the others, I say, "Don't let the stats scare you!" We're writing the book on survival with Herceptin.

<3 Lolly