HER2+ and no Herceptin Treatment

[barbiecorn]

I am curious as to any of the HER2+ group that has been unable for one reason or another to take Herceptin and yet been cancer free for a long period of time.

[Montana]

I didn't have H in 2005 after chemo. I am still cancer free 7 years later.

[barbiecorn]

So happy to hear you are doing well seven years later without herceptin!

[Rolepaul]

Nopositive nodes is important!!!!!

[barbiecorn]

I had no positive nodes.

[Debbie L.]

Apparently cancer free 11+ years later. Positive nodes, largest = 6cm.
Debbie Laxague

[barbiecorn]

No Herceptin and cancer free 11 years - I am so happy to hear that Debbie!!!!! God Bless You!!! You give me hope!!! I am not taking Herceptin.

[sarah]

personally I'd push for Herceptin. in 1999, I asked about getting Herceptin - I had DCIS- cancer only in the breast no node involvement. they said no not unless I was metatastic so.... nearly 5 years later I was metatastic! I believe everyone who is HER2+ should get some amount of Herceptin. Why risk it??? Herceptin is easily tolerated. I've had far more problems and side effects from radiation (heart, lung, etc), chemo (skin, fatigue, etc), femara (bone loss, etc.) than from Herceptin. Actually can't think of one side effect I've had from it. So personally I would yell and scream until they gave me Herceptin but that's me and my experience. Do more, not less. Don't let this mother out of the box! Why risk it? You might be lucky but...
good luck
health and happiness
sarah

[barbiecorn]

Sarah - did you have a bilateral mascectomy? Thanks for your input. I appreciate it. Therefore, Sarah you started Herceptin five years later? How are you doing now? My fear of Herceptin was the heart issues as I am a senior and my father's family all passed from heart issues in their 60's. I also have some heart related issues. I can't say I will never take Herceptin. I had my bilateral mascectomy in February of this year and still am not sure if my decision not to do Herceptin is the right one, but thank you for your input...Blessings to you. Barbie

[sarah]

I had a mastectomy, first time around. came back almost 5 years later in same breast!!! Since I was then metatastic, I had heavy radiation and after that breathing issues - fibrosis in my lungs due to it and then later a heart artery collapsed in a spot and I now have had angioplasty and a stent put it. (easy operation, fun to watch!!) all the cardiologists said it was due to the radiation and not Herceptin and not colesterol. The collapse was well within the margins of the radiation and not on the left side where a problem would have shown up due to Herceptin. I took Co-enzyme Q10 religiously after reading about it on this site (but everyone has to do their own research and decide - I'm not a doctor) all through Herceptin and still now and my heart test sonogram and/or muga was good.
Here in France they give you Herceptin if you are HER2+ whatever you are - DCIS, nodes or not. I will always wonder if I had had Herceptin back in 1999 if I would have avoided a recurrence but we must never look back and be grateful for the health we have. I asked about Herceptin back then (I wanted and expected to have it) but the stupid oncologist at City of Hope (now a big deal I hear) said it was totally unnecessary in my case!!! She was wrong. I bet she recommends today.
All choices are ours or should be and all are correct for us.
Things become easier once all is decided and treatment is on. Next anxious moment is when it ends and you're waiting to see if it worked. It does and there are always more choices and treatments coming down which are better and easier.
I am doing nothing right now for cancer except annual testsbut I'm 8 years out from the 2nd time.
For my heart, since the angioplasty, I take plavix and another heart drug and crestor every 2 days although colesterol is not a problem for me at all. Thanks for asking.
I'm a great believer in Herceptin but then when I had my recurrence I was sure I was a goner because I knew how aggressive it is and where it was and could easily go and how particularly difficult to see mine was - no tests showed the cancer the second time around! only with surgery and they knew the margins weren't clean and couldn't get clean. So Dr. Slamon is my hero as well as my oncologist here in France who went beyond protocol to save my life.
Have you had a Muga test? Do you know if you already have a problem? Also could they test you more often? Would that help you? Also keep an aspirin with you at all times and if you have chest pain, chew it and then call an ambulance. Unlikely you'll need it but personally everyone should have aspirin handy.
I'm 66 years old. I'm enjoying life. Love every day!!!!
Health and happiness
hugs and love
sarah

[AlaskaAngel]

Barbiecorn,

Another opinion...

I never had trastuzumab myself (due to the failure of my onc to disclose to me my HER2 test results in response to my inquiries).

However, I tend to favor the use of it prophylactically, like Sarah. But in reading Eve's posts elsewhere, with her cardiac issues in taking just trastuzumab without any chemo, I can understand your concerns about that. It is likely that with time Eve's cardiac issues will lessen, but it is difficult to say for certain.

Given the alternative shorter period of use of trastuzumab successfully in the FinHer study, plus your cardiac question, maybe doing a shorter course would suffice, although that study did include chemo as additional protection I think.

I have no idea why I did not need any trastuzumab to stay NED, other than that I was stage I and in my early 50's (and as Rolepaul discussses, I had no positive nodes). I had both DCIS and IDC.

A.A.

[barbiecorn]

I too am 66 years old. It is too late for me now to get Herceptin anyway but God forbid, if it comes back I will have to deal with it then. I spoke to two women in England who did not get Herceptin and are ten years out with no recurrence. You just don't know. I felt as though what should I do, get a heart attack and die from Herceptin or take my chances. It is an individual decision. One that I may regret at some point but I hope not. Thank you for responding. I never heard of the test you mentioned but I know I have to get an oncologist to monitor me so I will be seeking one out soon. My alt. M.D. suggested this and she is giving me some sort of blood test for cancer (not sure what that is) but I know I need more. Just don't want to do anything like pet scan as that is radiation too. Don't know what test would be safe to do to monitor. My breast surgeon said there really isn't any test that is very accurate except pain but by then, it might be too late. I am not happy with doctors in general. Good Luck and thank you and stay well.. Barbie

[barbiecorn]

God Bless you A.A. - may you remain NED forever as I hope I do but I am just at the beginning of this - six months out BMX - so who knows. I can only hope I fall into the number of women who never knew they were HER2+ years ago and still survived without Herceptin as you have. I too was node negative - Stay Well....Barbie

[barbiecorn]

A.A. I am just happy to know that you are okay for so long and did not take Herceptin. It gives me hope that maybe I will fall into this category. (((hugs)))

[suzan w]

There are some pretty reliable tests to check for heart functions if you decide to go the herceptin route...MUGA for one

[barbiecorn]

Which posts by Eve? Did she have heart issues with Herceptin? What is her user name. I would like to look up her postings about her heart issues with Herceptin.

[sarah]

Like AA I have also heard that a very short time frame works as well as getting Herceptin for a year (which was the norm). I think they mentioned a month.
You'll need periodic Mammograms, scans or something to monitor you and all will emit some radiation but not like radiation therapy.
It's rare that a cancer patient doesn't receive some radiation therapy.
Definitely talk to an oncologist, more than one if you're unsure of what they tell you. I disagree about pain being the only indication, cancer doesn't hurt unless it's well along and most people are diagnosed long before feeling any pain. For breast cancer it's generally because of a lump (painless) or through a mammogram.
The blood test is good as a baseline and to have taken periodically to check that it doesn't start to climb up but it's not thought of as a reliable enough tool on its own.
I urge you not to rely on alternative therapies alone. Use them in conjunction but follow what has been tested and works. Cancer is serious.
Good luck with your health.
health and happiness
hugs
sarah

[AlaskaAngel]

Eve posted some here as a newbie but also some on the BCO forums about it under HER2 positive bc, I think.

[barbiecorn]

Thanks Ladies and thank you for your concerns Sarah....(((hugs))) I will follow up with an oncologist definitely for monitoring.

[sarah]

Great.
Stay strong
hugs
sarah