Angry - lost the herceptin gamble

[Merridith from Canada]

Well, my high hopes just got dashed. Was randomized onto the "observation" arm of the adjuvant herceptin study. There goes any hope of changing my odds. The only reason that I'm not walking out of the study is that if I do, two other poor people in my exact position on the "receiving" arm will not be getting their chance.

Couldn't find a doc up here in Canada who would give it off protocol.

Sat there and listened to the doc feed me the "... it's (herceptin) there if you need it..." script which is of course a bunch of pacifying bull-@#%@ since if you "need" it you are stage 4 with mets and you are probably on your way out with a bunch of chemotherapy to prolong your suffering.

I am so furious right now I don't know what to do. All's I know right now is that this study will never benefit me in any tangible manner. If it works, I will still only be getting the old method which is to receive herceptin AFTER mets occure. (Which of course will enragingly be just the ticket to prove that herceptin works for the lucky ones that get it) I feel that I have been practically given a death sentence for the "greater good". (I know, I know that I should still have hope; but a 1 in 3 chance of mestastizing seem pretty like pretty @#%@ty odds to me).
I've been in a rage/dispare for three days now. It seems so unfair. Has anyone got any words for me?

[Anonymous]

WHO SAID YOU HAD A 1 in 3 CHANCE OF RECURRING? WHO SAID YOU HAD A DEATH SENTENCE? WHO SAID ALL CHEMO WOULD DO WAS PROLONG THE SUFFERING OF STAGE IV GALS???

WHERE DO YOU GET THIS INFO?

If you really want to get Herceptin now, you can come to the states to get it. Is it worth your time and money? You be the judge.

[Kathy]

I agree with anonymous. Just because I am stage 4 with mets doesn't mean I am on my way out. I didn't get herceptin til mine had come back, and I've been doing it for 3 yrs and lived a fairly normal life. I don't think any of us have a death sentence, its more about knowledge, knowing how to live our lives and trusting in a power greatly than us. God Bless you and hope you can get rid of that anger and move on to make yourself a survivor.

[jojo]

Sorry this is happening to you Merridith. :-( Since you live in Canada, perhaps you could try the closest state in the United States. Wouldn't hurt to try!

Keeping my fingers crossed for you....

Take care!

[Anonymous]

Merridith,
Some of the gals that have had herceptin early are now recurring. It is not a guarente. I know you are feeling like that was your only chance, but it is not true. The standard protocol is a good one. IF you recur maybe you would have anyway.Think positive and give it to God, he had his hand in the selection and HE knows what he is doing.

[Anonymous]

AMEN!!!

[Monica]

I understand your anger. So much evidence seems to indicate that herceptin is the way to go. It's unfair it's not available to those who want it. I was incredibly thankful that I was randomized to an arm with it. (Although now my heart is having irregular heartbeats - perhaps my heart can't tolerate herceptin.) I tried to prepare myself beforehand. One thought I had was that the vaccine may be a better way to go anyway if a trial becomes available. I also had to tell myself - I need to do what's in my best interest and expect everyone else will do the same.
Monica

[Anonymous]

I wish I would have had the 1 in 3 odds instead of being dx stage IV at primary dx. You had surgery, chemo, and rads correct? Seems like you
have a good fighting chance to me....

[Rozebud]

Can you go directly to genetech and plead your case? Try asking Lauren - she was randomized to a non herceptin arm and petitioned the drug company and onc until she got it. Show them the MD Anderson study last month that pulled the trial and now gives it to everyone neoadjuvently. And why do you have to stay in the study if you don't get it? They won't "pull" two other people out. That's the point of randomization.....out of 10 people, 3 might not get herceptin, or 10 of out of 10 all GET herceptin, or 10 out of 10 could all theoretically not get herceptin. Just b/c you have a 1/3 chance doesn't mean the sample will be exactly 1/3. Someone else would take your place if not. I was set to walk if I didn't get in the randomized arm, but then again, I was familiar with an oncologist who offered it off protocol....

[Kitty]

Wow,

I understand feeling the disappointment of not getting the preferred arm of a clinical trial because I was not selected to receive Herceptin in the clinical trial I was enrolled in either. However, I did not or would not even consider not continuing in the clinical trial just because I did not get what I hoped for. Clinical trials are for the good of research and future people will benefit (as we are now from those who enrolled before us to test taxol, taxotere, adriamycin, cytoxan, gemzar, navelbine, xeloda and so on). To enter a clinical trial means you are willing to try something that has not been proven...sometimes you are doing something for the very first time (like the phase I vaccine trials). The intent is never that you are to enter this because you will benefit...that rarely happens except for some very lucky few....rather, it is to help out for the better cause. There is nothing yet that proves having herceptin earlier is any better than waiting for a recurrence to have it. Even if they later find that it will prevent or slow down the time to progression, there is some question as to the safety when combined with certain chemo drugs (such as adriamycin, which is known to damage the heart). In any event, I happen to have progressed with the cancer going to my liver. I would like for you to know that I am now NED after having weekly taxol/carboplatin/herceptin treatments. I am far from being on my way out. Quite the contrary, I have worked the entire time I was on treatment and have suffered no ill effects whatsoever. I would hate to think what boat we would all be in if everyone shared your feelings about clinical trials....quite frankly we probably wouldn't be here at all. I hope you have had time to reconsider...it seems that you have not taken the time to really read all the inspiring posts by the numerous stage IV women who regularly post on this site. I really don't think you would have made such a thoughtless and unfounded statement regarding stage IV people, chemo and being on their way out. We are very far from any of that. I hope you find peace and happiness.
Kitty

[Steph N]

Hi Merrideth -
My words for you:
Try not to let this disease get you into such a frenzy. In a perfect world none of would have this and, by the same token, all the people (such as my husband) would not have diabetes, or all the other diseases.
We all want to live and behave like we did when we were 21 for as long as possible - things happen to change our lives whether we are ready for them or not. We have to COPE.
Live your life as if you will NOT progress to mets. Try to see the glass as 2/3 full instead of 1/3 empty (don't know where those figures came from,BTW). Your chances to live long are good - and you need your energy for the present fight - not spending it worrying about what MIGHT be.
Take a deep breath and accept what has happened. I was disappointed not to get into a vaccine trial where I can still get my Herceptin. But, I know that I must hang on and remain NED until another version of a vaccine comes along.
You may be able to qualify for a trial for one of the other new drugs coming out. Stay tuned!

[Anonymous]

Wow. I understand that you are upset and angry - but please consider the impact of your words when you post.

Many of us are Stage IV and we visit this site for the support that it offers. I was pained more than I can ever say to read your words writing us off as being "on the way out" with chemo to prolong my suffering. I work very hard to protect myself from negative statements like yours - they are really tough to handle. This site was the last place in the world I would have expected to read such a thing.

"On the way out" DOES NOT EVEN REMOTELY DESCRIBE MY LIFE -- I have three young kids and I will move heaven and earth to stay here for them. I think it was inconsiderate, rude and self-centered of you to write something like that. I only hope that your anger momentarily caused you to be lacking in any grace and judgment.

Think twice about the impact of your words on others. And be grateful that you still may, in fact, not recur with this disease. And still yet, you may find a doctor to give herceptin not if that is what you want.

But please, above all, respect that many of us walk in the path that you dread-- and we wouldn't wish this upon anyone - but take greater care in how you describe our challenge.

[Linda in Calif.]

Hi Merridith: I am so sorry that you are in such distress. I understand your frustration...I was pulled from a clinical trial because of heart damage after 4 months when I was to have recieved Herceptin for a year. I am at Stage III...3 tumors in the same breast and what the pathologist termed "extensive lymphatic involvement"....a prime candidate for disease progression to Stage IV. So I was definately upset when I could no longer get Herceptin. I frankly felt like I had been handed a death sentence. I also feared the effects of prolonged chemo and the quality of life I would be experiencing. I thank God I stumbled on to this site because I have read SO MANY positive stories from people who have progressed to Stage IV and have gone through many different regimens to halt their cancer and still been able to retain a good quality of life and are still here years later to post about it. This has changed my original outlook from a very negative one to a much more positive one. I hope to someday participate in a vaccine clinical trial but for now I will just continue to be vigilant about how my body feels. I have been NED for the last 2 years and my scans in June came back clear. Remember, this is without the benifit of Herceptin. So, try to realize that some people are going to do well WITHOUT Herceptin and others are going to do poorly even when they have it. As mentioned in other posts...there are other treatments/drugs other than Herceptin for those of us that over express the HER2 gene. Perhaps you could see if you can get into one of these alternate trials. I hope things get better for you in the future. Take Care, Linda

Meredith,
I know exactly how you feel. I too entered a clinical trial for herceptin and was randomized into the control arm of the study. I think trial nurse was as upset as I was, she actually encouraged me to drop out of the trial. I did end up dropping out of the trial not just based on not getting herceptin, but at that point I had seen 4 oncologists and they had all recommended dose dense chemo which was not part of the trial. I have 2 small children and I just could not stay in the trial know that I would not receive herceptin or the chemo Drs were recomending. I then ended up finding a dr who was willing to give me herceptin off protocol.

As far as other people who might not get herceptin in the trial because of you. I think most trials are looking for a specific # of controls and a specific # who will be in treatment arms, so your dropping out should not affect anyone else getting into the treatment arm. Also did you know that there are people who apply to the studies who want to get the control arm? I was shocked, but when I was looking into mine the nurse said about 1/2 of the people she had apply did not want to get herceptin.

In the end I think you need to look inside and do what is best for you. I think it is important to have confidence in your dr and your plan of care. Good luck in whatever you decide.

[Merridith]

Wow!!!!!!!! Thanks everyone for your kind and knowlegable words to help put me straight. I slammed off the above missive at 3 in the morning in a fit of rage after tossing and turning half the night. Didn't expect to get much response.

I owe the women who are struggling with the trials of advanced stage 4 cancer an appology. You have in fact given me much courage if in fact I have to face the situation myself. I spoke out of suppreme bitterness and the belief (at 3 am) that I would be walking the walk myself sometime in the near future.

Merridith

[Merridith]

Hi July 7:

Thanks so much for posting. Your words hit the spot.

No, I didn't know that a significant number of women prefered to get the observation arm. But it makes sense. I too, was hoping to get the observation arm, until I did some research on herceptin.

I think will watch for vaccine trials that might be appropriate. I think it is best to hit this disease fast, right at the begining when your cancer load is lightest. It probably gives you your best chance.

[Kathy]

Sorry for blowing back Merridith and I understand your anger and frustration. I've been irritated and said the wrong things once or twice myself. I just glad you saw in my response, that yes, we are out here surviving Stage 4 and fighting for all its worth. God bless you

[lyn]

Hi there,I have not been posting lately I always seem to run out of time, well where do I start, I am not here to judge, reading some of the responses you have had a roasting, we all have moments when we bash on the key board, some times I have been relieved that what I typed didn't go through but I got it out of my system, but most important we are here to help because we are the best ones to give opinions and advice. I am in Australia and Herceptin wasn't even considered when I wanted it let alone being Food and Drug Approved, so I went straight to Genetech who gave me contacts in Australia and through e-mails my oncologist managed to get the drug, and I am not on any trial, so maybe you should start shopping around for another onc. I have been doing this since 1998 at the age of 44, when I was given at best 2 to 3 years which was a relief because I thought I wasn't going to be around in 2 to 3 weeks and I was ready to cancel the new glasses I had ordered and empty out my wardrobe. I had a very agressive invasive breast cancer with a tumour the size of an orange which had been misdiagnosed in the April, 3 months before, 16 out of 16 lymph glands all positive and not hormone responsive, so I had a radical mastectomy with the chest and pectoral muscles removed, the surgeon just kept cutting until he thought he couldn't see any more or couldn't go any further. I went on AC rads CMF and then had reoccurences in the neck and skin mets and have been having them ever since, so I have had Femara, Taxotere, Xeloda, Aropmasin, Herceptin, Herceptin/Navelbine,Lost count of rads but just finished another 12 on my right neck which turned into just about a 3rd degree burn all while having Herceptin/Taxol/Carboplatin weekly,which I might add is not FDA approved here yet either, the drugs are legal but the combination hasn't been approved but it is working and I noticed a lot of other oncology patients are getting Taxol/carboplatin for other cancers. And I do not know for how long I will need it, I have a daughter 14 1/2 who has been with me every step of the way so she is quite comfortable with the doctors and nurses, laying back in an arm chair waiting for me, and I am scared for her because there was no history of any cancer in my family. My other half and 2 sons tune out to my situation because I always seem to have it under control, one step ahead of the disease. I have just lost my hair again for the 3rd time so I am frustrated and mad at the disease, but what can I do but just keep in touch with this site for new developments, we are 10 years behind other countries. Some of the ladies have had to come off herceptin because of their heart but that doesn't mean that they have to quit, yes Herceptin is a bonus but in the mean time while the drug companies are making plenty of money, tomorrow is another day with the hope of a cure. We all go through what you are going through and believe it or not if I didn't take antidepressants I would be visualising my own funeral every day which is a waste of energy, and the one I am on is not addictive, but having been through heart failure, thyroid disease both which also just about killed me, not to mention putting up with an undetected fractured shoulder,which now requires a reconstruction, the death of my father, his brother, many close friends and all over the last year it would be so easy to just give up but we ladies don't, we all have our own tragedies. Instead I have a Heart Specialist, a orthopeadic specialist, a general physician, my own GP with two young children who lost her own husband to an inoperable brain tumour not so long ago, and in between all of this I am waiting for the all clear on my heart to have my DEIP breast reconstruction, and hopefully I won't need the radiation oncologist again because both the right and left sides of my neck have been cremated, which makes for neck resurfacing in my books, so I hope to gain a new body and hair style out of this and be younger because I have had so many cells killed off and they have all been replaced with new ones. I turn the big 50 this year but I feel robbed of the last 6-7 years but on the bright side my son turns 21 on the same day and I am so pleased I have hung on and I intend hanging on for another 40 years at least, at last I have a wedding to go to this month for a change, so things are looking up. So with many odds stacked against me if I can do it, we will help you do it as well. Just because you do not have the drug yet the fact that you have been tested and can have it still constitutes HER2 support recognition.

Love & Hugs Lyn

[alicia]

Lyn, Thanks for telling your story....you have inspired me. I hope to have your strength!!! xoxo Alicia