my 2 cents worth

[michele u]

The more i think about the 2 year Herceptin, and listen to all the dr. say no, they will probably decrease the length, not increase. That is true with chemo. Herceptin is not a chemo. It is a monoclonal antibody. this makes it DIFFERENT then other chemo. I can see the agruement that your body might get resistent to it, but i don't think they should put it in the same category as chemo. What does everyone else think?

[Rozebud]

I think they'll eventually get to the minimum time you can take it that maxes out effectiveness, in order to preserve heart function.

[Lolly]

Hi Michele; I think your doctors are just being very cautious, as it's probably not just the possibility of resistance to Herceptin that's making them say no, but the heart issue. Also, another possibility comes to mind, one that's not discussed often but which I've talked with my onc about: Being a monoclonal antibody, Herceptin does arouse the immune system, and if there's no evidence of cancer to fight what will the immune system do then, being as it were "All dressed up and nowhere to go"?! There is the potential for developing auto-immune diseases as a result of this therapy. That was also one of the "unknowns" regarding the vaccine trial in Seattle, that the vaccine would also stimulate the immune system and could cause problems in that way.

I know it's galling for you not to get more Herceptin now. I can imagine the frustration, but when I first started on Herceptin for recurrent disease, my onc and I talked about the possibility of being able to take "breaks" from it; so far I haven't been able to do that. Dr. Salazar even raised that issue at one of my vaccine appts., that maybe the vaccine would enable me to have a long enough remission so I could take a break. Believe me, if my onc ever feels it's safe for me to do so I will, as there's some evidence that given a break, the cancer cells will "forget" the exposure to the agent if given enough time, and respond again as if it's new to them. This is the theory behind using chemos over again when they've been successful, and it's been at least a year since the last use.
With that in mind, you shouldn't have to feel you're just "waiting" around for recurrence to get Herceptin again; I'm hoping for you that the thinking will change on this and you and others like you at higher risk for recurrence will be allowed to get Herceptin periodically, as kind of a "booster" to your previous doses. Call me a crazy dreamer, but ask about that possibility. Don't give up your fight, it's your life!!!

<3 Lolly

[sarah]

Interesting. I'm personally terrified that here in France they may say i've had enough Herceptin and will take me off it. perhaps irrationally I believe that if I'm taken off Herceptin, it's only a matter of time before the cancer will spread somewhere else, particualrly since I'm a triple positive (HER2+++, ER+, PR+). It seems that for us triple positives we should take Herceptin and AIs at the same time or else dropping one, causes the other to flame up.
Here in France, one's lucky to find soemone who understands what HER2 is.
Sarah

[Unregistered]

My onco said that they are trying to get it to 6 months as apposed to 1 year!

Just my .02, I just started my year of herceptin after I finihsed my 12 taxol with herceptin. does anyone get side effects from just hercepting?

Thanks,
Randi

idc, stage 2, no nodes, er/pr+ her2neu+, lumpectomy, 4a/c 12 taxol/herceptin, then herceptin, every 3 weeks for 40 weeks.

[pattyz]

What a wonderful sensible post! Wish we could 'sticky' this one from you :o)

I became NED with my minimal systemic mets after just two months of Navelbine/Herceptin. It was my understanding at the time that I would always be able to go back on this successful combination. That was three years ago! ( I never count my brain mets in that, ofcourse. )

big hugs to you,
pattyz

[Lolly]

Patty, thank you, but I wouldn't want anyone to take what I say as gospel! Are you still on Herceptin mono? Three years NED is fantastic, and yes, I understand about not counting the brain mets in there as from what you and our other brain mets survivors say it's treated as a separate issue. Navelbine has worked well for me twice now, and I'm now on my third round of Navelbine/Herceptin and showing improvement 2 months into a 6 month schedule. Big Hugs back to you :)

Randi, I've been on Herceptin mono-therapy a few times in between chemos, and yes, had side effects while just on Herceptin. These included flu like symptoms the eve of treatment with achey joints and muscles/slight fever, tiredness, and the infamous runny nose we've all complained about. In the first year of being on Herceptin these symptoms were a pretty regular companion of each treatment, lasting a day or two, but gradually diminished over time to just a little tiredness the day of treatment, and the runny nose for a couple of days. Good luck with your year, you'll find it much more tolerable without the chemo!

Sarah, if you're Stage IV, Herceptin indefinitely is considered Standard of Care; they shouldn't be able to take you off of it without your permission. I am personally hormone negative and don't know much about the AI's except what you all report, but I don't think it's irrational to expect that in Stage IV disease, Herceptin basically puts the brakes on any further spread. I believe that's why my disease has never spread outside of my lymph nodes, as far as we know. If I were to ever consider taking a break from Herceptin, it would only be if I had a "clean-as-a-whistle" PET scan, and then after a lot of soul searching!

<3 Lolly

[TriciaK]

This thread has been very thought-provoking for me, and I really appreciate all the comments, and especially Lolly's evaluation of long-term herceptin. Being a 3rd-timer and stage IV, I had hoped to be on herceptin indefinitely, but have just been taken off it because of a much lower echo score. THe cardiologist ordered a MUGA to double check, and I should have that score soon, but my oncologist felt we should stop herceptin now. I have felt fortunate to have been on the hercptin for 15 months, since I started out right after a heart attack.And my last PET showed NED! I also have fibromyalgia, which seemed to go into remission during the six months I was also on navelbine. It is back with a vengeange now, and I wonder if what has been suggested is indeed true, that the herceptin can allow the immune system to over react, which would produce arthritis and fibromyalgia. It is scary to go off the herceptin, but maybe a break will be a benefit. I feel much better about the whole thing after reading all these and other comments. What a blessing you all are and have been! Thank you, and have a wonderful Thanksgiving. We truly do have a lot to be thankful for! Hugs, Tricia

[Lolly]

Tricia and all, here's a link to a very interesting article I found on this subject, along with an excerpt:

http://www.nature.com/nbt/journal/v23/n9/full/nbt0905-1037.html

"...Collateral damage</SPAN>
Several of the most recent mAb successes—Avastin (bevicuzumab, Genentech), Erbitux (cetuximab, Imclone Bristol, Meyers Squibb, New York) and Bexxar (tositumomab-I131, Corixa, Seattle) —have been in treating cancer, where standard of care just a decade ago was brutal regiments of chemotherapy and irradiation. Compared with these cancer mAbs, however, the safety benchmark will be much higher for treatments of chronic conditions (for example, MS and rheumatoid arthritis), where patients need to take drugs for months or even years, and the disease itself often is not imminently life-threatening.

John Shields, an immunologist and principal at the London branch of Abingworth Management Ltd., points out that the claims that antibodies have the advantage of being very specific to a target are misguided. "Antibodies are just proteins that bind to a particular three-dimensional shape. If the shape is only on the target you want, great. If it's on a target elsewhere in the body, it will bind there," he says. Shields also cites the collateral effects of antibody binding, including activation of other parts of the immune system, such as the complement cascade. He points out that the success of a drug depends not only on whether it is a mAb or a small molecule drug, but probably more importantly on what the drug targets, its pleitropic effects and localization in tissues other than the target organ system.

'Off-target' effects occur when the therapeutic target recognized by a mAb (for example, an antigen found on breast tumor) happens to be present at a different location (for example, in the heart). This may be behind some troubling side effects of the cancer blockbuster Herceptin (Genentech). The first warning on Herceptin's label is cardiomyopathy: congestive heart failure and ventricular dysfunction. In a phase 2 study of the drug, Herceptin plus chemotherapy induced cardiac dysfunction in 28% of the patients, a fourfold increase compared with mAb or chemotherapy alone. This may be because the tumor target, HER2/neu, is also often present on cardiac cells, where it is targeted by the mAb. Researchers surmise that chemotherapy damages the heart, upregulating the expression of HER2/neu. Herceptin homes to cells with increased expression, exacerbating the problem3 (http://www.nature.com/nbt/journal/v23/n9/full/nbt0905-1037.html#B3#B3)...."

[Unregistered]

Good post - you are such a busy person on the site. 10/10.

What a thought provoking article.


RB

[Sandy H]

As for the fibromylagia flaring up after chemo. It is because while we are on chemo the white blood count is down. The higher it is the more problems with fibromyalgia. Mine will flare when I stop chemo but is in remission while on it. Probably the only good thing about it besides it killing the cancer. There was an article on this in one of the newsletter I get but don't remember which one it was in. I get several of them. I hope this answers Tricia's question about fibromylagia. I also have it and it can be nasty. hugs, Sandy

[Unregistered]

No, Lolly...... when I say I was NED and quit after two months, I mean BOTH Herceptin and the Navelbine. I have been on NO other tx's in the past three years, other than for my brain mets, now with the Temodar/Xeloda.

So happy that you're still doing well!

xoxoxpatty

[pattyz]

just wanted this to show from me........the above post to Lolly.

[Alice]

How interesting! This explains a lot. Sometimes what we dont know is scarrier than what we do know!Now i will be more willing to listen to my onc when she says we need to be more carefull about this amazing drug because we dont know what the backlashes of it to leading to other problems will be.

Don't get me wrong I do still think it is a life saver for many of us, myself included, I just think we still have a lot to learn.
I was particlarly interested in the part having to do with the fact that after some of the mcab's were stoped the disease progression continued. Does anyone have any more info on this and I would like to get others opinions on it?
I'm not sure if I was interpreting what I was reading correctly let me know your thoughts are on it.
Thanks, Alice

[al from Canada]

It sounds like the honeymoon is over for herceptin....a fall from grace? I think that a lot of this is a predictable backlash from the "too good to be true" phenomena. This has been touted as the greatest cancer therapeutic discovery in 20 years, we should expect scepticism! Most people don't like change and are extremely resistant to it...doctors included. Herceptin is more than change, it is a therapeutic revolution! In the absence of further clinical data, we may have to wait until the pendulum swings back the other way before it gains wider acceptance. The only question is which is going to happen first, the natural progression of events due to clinical results or a patient backlash an a wider acceptance of antecdotal evidence? Emotionally, we would all like the pendulum to come back at light speed and with greater force; those of us with cancer are more willing to play the odds based on "less scientific" analysis.

This brings me back to an earlier rant: if you are stage 3a or b, and look at survival stats (which is a barometer that scientists use), is 2 - 3 years of herceptin playing the odds, wishful thinking or a calculated risk?? At the risk of sounding paranoid, I have to wonder how much of this backlash is a result of a third party (cost / benefit analysis) intervention?

It all comes down to taking charge of your medical treatment plan; if you can't take charge at least become an active partner in your medical destiny then you are into gambling or wishful thinking. If you think that herceptin should be part of your medical solution, speak up and arm yourself with empiracle data. If there is an absence of empiracle data, use what you can and reduce the argument to simple math: the chances of surviving this disease for 5 years is less than 50%, the chances of getting herceptin induced heart failure is 2%....do the math!

Attached are some interesting stats:



[Sorry Alaska Angel but in Alaska in 2001, the number of deaths will represent 50% of diagosed cases where in California the death to new cases ratio is .20 (20%). It would take a lot of digging and variables to equalize to discover what accounts for this difference?? BUT, I'm convinced, that all of us have some level of influence in the results.

Last word before I start to bore: I have to wonder what would happen if all of the 30 - 40 patients affected by their oncologist's (year 2) decision had a heart felt meeting with him or her, (armed with data of course) to express their concerns? First I would ask: hospital x does and you don't....please explain.....I get emotional about this because I can't help but imagine my response should my Linda get this "good" news. -Al

[StephN]

Hello Everyone -

This thread has taken several directions - all of them interesting!

First the idea that Lolly brought up about the "other" side effects of taking long-term Herceptin. I do not have fibromyalgia, but HAVE developed an "unspecified connective tissue disorder" about two years into taking Herceptin. It is better now, but the rheumatologist does not know what caused it other than I have learned through blood tests that I am ANA POSITIVE. This is a kind of autoimmune disorder. And it is something that I did not know about myself until tests were run to find out what was causing the joints to swell, etc.

Both the rhuematologist and my med onc looked into whether it could be the Herceptin or not. They found nothing in their research that gave any diffinitive answer.

As for the ANA probem, I do not know whether I was born with this, or it is something that has changed along the way due to some new drug. This is a question that needs further study. My physical therapist says that she runs into a lot of patients with various aches and pains who are ANA positive and have no indicators for arthritis or other neuralgias.

But, for me, I have ONLY Herceptin as a big gun to keep my cancer under control. So far it has done that much for me, but I don't quite know what else ... just have to bumble along with it and see how long I can survive life as stage IV.
To be continued!

[Lolly]

Alice, the reference about disease progression after therapy was discontinued was in relation to treatment of autoimmune disease with mcab's. Sorry for the confusion, but I thought there was some interesting info in the article pertaining to some of our "side effects" to Herceptin even though the research was on autoimmune disorders. Whether those of us on long term Herceptin for metastatic disease would progress if we stopped Herceptin is an unknown...as long as we're keeping the disease at bay we have to assume Herceptin is doing the job.

<3 Lolly

[Lyn]

Had to add my bit, I first got my auto immune disorder in 1988, a low grade mixed connective tissue disorder, meaning a bit of all of the symptoms, ie. Lupus/Sjrogens/Sclerederma/Raynards and anything else, I developed Fibromyalgia while on chemo, this was a result of not sleeping and was treated with Prothieden 25mg am anti-depressent use for other things as well, some of these auto immune disease are actually treated with chemo, Lupus is being treated with Methotrexate as well as Cyclophosphamide, CM in the CMF. I found that it did go in remission while I was on these drugs and now I know why. I am currently on Cyclophosphamide (Cytoxan)and Xeloda with Herceptin from my latest reoccurence in my remaining breast and of course the Xeloda is the F in CMF. I noticed before going onthe Cyclophosphamide I was having troubling straightening my fingers in the morning they were so stiff and my knee were murder but this has been relieved, as for the status of my BC at the moment I don't know and as it is not an agressive disease this time round it is taking a back seat to my other chronic pain injuries. What happens when I stop the Cyclophosphamide I don't know, but the other thing I found out was that some of these chemo drugs are impaired with anti convalsunts this I have now found to be true because I was on Epelim 200 for nerve damage following surgery for the whole time I had been on chemo since 1998 and may explain why I never seem to stay NED for long, I have since changed this drug to Neurontin which is also being used for my Trigeminal Neuraliga, so hopefully the Cyclophosphamide will work this time. If you are wondering why I keep typing the word Cyclophosphamide is because for the life of me I can't make this word stick when it comes to spelling it so I figure if I keep spelling it, it will have to stick sooner or later, chemo brain, I sure have had enough of the stuff.

Love & Hugs Lyn

[AlaskaAngel]

I think this thread is interesting too...

Al, Thanks for the stats for various states (I wish I'd known what they were when I was diagnosed in 2001...!) I wouldn't be at all surprised if the surgeon I started out with here might be credited for a fair share of that lousy record... I can't stress strongly enough to anyone here how much better their odds are if they are treated at a major cancer care center.

The primary reason for the lousy record is the failure of physicians in general here to effectively monitor each other's practices... which also stands or falls based on the failure of reliable quality control by the facilities where we seek treatment. There are some very good physicians here, but it is a real struggle for them to improve the status quo.

I too am interested in the question of how the autoimmune system is or is not affected by Herceptin, as I had some autoimmune level results a few years prior to diagnosis that eliminated me from the pool of blood donors even though they were inconclusive. At time of diagnosis I questioned my onc/hematologist as to what that meant in terms of doing treatment, and he failed to respond at all to the question. As a so-far-as-we-know NED since treatment, I do not know what effect Herceptin might have on the uncertain immune response levels I had several years prior to chemo (nor what effect the chemo may have had subsequently).

A.A.