from what I understand
 

Herceptin is 99% humanized but there is still 1% of mouse antigens in it. Perhaps you are reacting to the mouse antigens as foreign invaders (which they are!)

At the Genentech stockholders meeting (I am not one, but attended with a friend who is) this year I asked if people had developed antibodies to Herceptin monoclonal antibodies (as such a phenomenon had been described with another monoclonal antibody being used for either rheumatoid arthritis or leukemia--I don't remember which at this moment, but can look up--which had altered its efficacy obviously in some)


The CEO of Genentech said it had not been described with Herceptin and because it was 99%humanized--although the antibody is "manufactured" or "cloned" within a mouse, what is being made by the mouse has 99%
" human" content--people had not reacted to that 1% of mouse.

I do not think they have had many cases of allergic reactions to the first dose to investigate. Of course, once someone has a bad reaction you don't want to keep giving it to them (at least not without some good premedications) and challenging their immune systems to provoke some life-threatening reaction in order to study it. I hope they can find some way around that and find out exactly what has caused you to react this way so you can benefit from herceptin. The good news is, from what I can gather from reading, lapatinib is a totally different kind of compound (not a monoclonal antibody, no mouse content, much smaller moledule) and should not cause a simiilar reaction. Herceptin can stay in your body up to six months after the last infusion. While this is not good in terms of your adverse reaction, perhaps it will give you some protection until lapatinib becomes available. I would also think they might be more willing to give you lapatinib once approved off label as you had shown yourself not resistant to Herceptin but allergic to herceptin and thus without an equivalent alternative. The FDA asked for fast track approval of lapatinib this week--hopefully it will take four months or so (wishful thinking!) if good reports come out at San Antonio. I don't know how Canada approves drugs, but perhaps GSK's compassionate use program could be of help.

I obviously have no expertise in this area (have merely educated myself by reading a lot of articles), but I hope something I have written has given you some idea to pursue or ask about, put your mind a little at ease or helped you in some way.

Best of luck!

How low can a MUGA go, before stopping Herceptin??
 

My EF is now 44%, down from a high of 67%. Can anyone out there tell me how low one can let it go before considering stopping Herceptin?
Thanks.
Mary

Mary,

Most doctors stop the herceptin once your LVEF gets to 50. Then when you're off it a while your LVEF will come back up and you can continue the herceptin.

Mary D I thought it was 45 or a certain percent below original. Lots of people have taken breaks so that may be what you need to do. Hang in there! BB

Carina, Would it make sense to see an allergist to pinpoint the problem. They could tell if mouse is the problem. Herceptin is great but not if it kills you. Sorry they don't have all the answers yet for allergies. BB

I started Herceptin Weekly with chemo (taxotere/carboplatin), after 4 1/2 months of chemo and 7 weeks of radiation I switched to every 3 weeks herceptin. I just finished my one year of herceptin in August 06 and I opted for a 2nd year.

I hear everything everyone is saying about side effects but most of it sounds like lingering effects of Chemo drugs. They can be so damaging to your body, long term. I have reflux on and off but my onc. says its from chemo. I definatley have weakening nails but they are getting better. My hair grew Fast, I thinks this depends on your own personal make up and not the drugs.

I'm not saying that Herceptin doesn't have side effects that they don't acknowledge but really all I have experienced is a little tiredness the next day.

Herceptin is truly such a miracle drug that I can't imagine anyone not opting to take it if given the choice. It literally saved my life.

I had my last 3 week Herceptin mid July. One year of it. I never had A/C. I had taxotere and Herceptin 9 months after diagnosis.

I have waited to report side effects to try to determine what side effects might be from Herceptin, what from Taxotere (and the drugs given with that).
I definitely have more energy now that I am off Herceptin.

Although I have trouble sleeping, I have less than before and I think it will lesson in time. Same with the anxiety, but I still have some. Much more than pre BC.

Much of the muscle pain from the taxotere has left execept if I get really tired and even then, it is not as bad. It seems that Herceptn may not have been the cause though it may have contritbuted as most of it left only a few weeks after I stoped Hercptin. Bowel movements are much more normal.
Breast pain around site of operation pretty much gone.

I most two pounds on the taxotore, but gained those back and 16 more. I was always starved on Herceptin. Appetite out of control. Sweets, carbs, were my downfall. I have my appetite more in control and have lost a few pounds but have a good ten more to go.

My eyesight appears to be going back to normal. My curley hair is thicker than before. Perhaps it thined prior to BC diagnisis and this is more my normal hair. A great hair stylest who is aware of the effects of chemo has really helped me with it and now I look normal and not like a standard poodle!

And that is about all that I can recall right now. Oh, some of my memory is going back to normal. But I now realize the limitations of my mind. And don't believe I will ever be the same in this area. Perhaps I just see limitations more clearly now. I don't feel that I can do everything.
Janet/FL

I started Herceptin only one week after my surgery and the plan was to do it every 3 weeks. Well, I got my first Herceptin dose and I experienced such severe side effects that I decided to go the every week dose. Side effects include, bot not limited to:

constant runny nose
severe joint pain
vision loss
hearing loss
constant dull headache
fatigue
insomnia
mood swings
soft/brittle/breaking nails (they were great during chemo)
cognitive thinking/reasoning problems
consistant low blood counts (get Procrit shots)

The headaches and joint pain got so bad that my oncologist sent me for a PET/CT scan and an MRI of the brain. Thankfully they both came back clean.

I took time off Herceptin since I was going away and really wanted to feel like a "normal" person. The joint pain and constant headache improved but did not go away completely. Everything else stayed pretty much the same. I was off Herceptin for 27 days.

I went back on Herceptin yesterday (September 29th). Got my loading dose and will go back again next week. After that I am going to again try the every 3 weeks.

I still have joint pain and pain in my lower right rib cage area so oncologist scheduled another PET/CT scan for October 16th.

I realize that without Herceptin us HER2 women would be left out in the cold, so to speak. I know that there are many women on this board who have been on Herceptin for a long time and some who are approaching the end of their year and are extremely anxious about going off herceptin.

My quality of life while taking Herceptin has been greatly affected (negatively) because of the side effects and I can't wait until my year of Herceptin is finished. And please do realize that's just my opinion for myself.

Herceptin side-effects...Take control!
 

Hi Ladies,
Haven't been here in a while...summer was a nice distraction.
I am 4th stage( Mets to lungs), 4 time survivor in 6 years. Bilaterals and reconstruction. Her2 pos...estr. neg. Grade 3.

Aug 2005 started Navelbine and Her2 and continued on Her2 ( Herceptin) indefinately. No real side effects except for fingers, and nails...dry, brittle, skin cracking etc. I had other side effects before I took myself off the steroids ( who needs it?)... I sure don't!

The steroids are given hand- in- hand with most Herceptin/ chemo treatments for nausea. Well I was not nauseated with Herceptin, so I asked them not to give it to me.

Bye -Bye to the other side-effects... no more bloating, weight-gain, mood swings, hot flashes, joint pain...etc etc..... it was all from the steroids!!

So now I only have the dry, sore fingertips, and dry hair, my fingernails rip and tear easily, and sometimes cramping in my calves. They suggest if I am ever nauseated ( which I am not), to use Gravol...so one time on a long car ride ( directly after treatment) I used NON-DROWSY ( GINGERROOT) Gravol. It worked.

If those are now my only side-effects...I can live with that.

Those of you on straight Herceptin might want to ask your chemo nurses or onc. about giving up the steroids... just try it.

Oops... ps...

The runny nose is gone too! It was also from the Decadron ( steroids).
The blurry vision started with 1st rounds of chemo way back in 2000... I think for me its just old age (49).

Sooooooooo sorry... one more PS............

Herceptin treatments... have been on straight Herceptin since Jan 2006. I dont ever want to go off it, heart is good ... AND LUNGS ARE CLEAR!!

RE: Low Mugga
 

I asked my onc last time I saw him and he said it depends on where you started... for eg: if you started at 58, and went to 38 this might be a concern whereas if you started at 70 and went to 40 they might take you off it right away. It fluxuates with everyone... my onc says I am off the charts and he won't even consider my mugga right now... it reads 85, 78... back up to 80 etc... he says thats probably too high for a real true reading. I have been on Hercpetin for a year.

I hope this helps... (but I would phone your onc and ask him what he/she thinks). I really think it goes up and down.

LuckyX you wrote<<Those of you on straight Herceptin might want to ask your chemo nurses or onc. about giving up the steroids... just try it.<<<



Never once did I ever have any steriods while on Herceptin. This is one drug they say doesn't need a steriod.

Hi Vicky
 

Hi.

I was told at my clinic that its "routine" to give steroids before/during the Herceptin... but that might be just here in Canada? I am not sure... but would be interested to find out because you are soooo right... you don't need it with Herceptin.

Thanks for responding.

Lucky

No steroids here
 

Vicki,

I am on straight Herceptin -- no steroids -- no nothing except Herceptin. Only time I had steroids was as a pre-med with the Taxatore.

I went to see an allergist who specializes in desensitization to get people through chemo. He had not seen an herceptin allergy before but had heard of someone at Harvard who might have had some experience. Roche, the distributor for herceptin in Canada, have also shared some info. with my oncologist (2 cases) and hopefully this will give some insight into a strategy to be able to put me back on herceptin. So far lapatanib doesn't appear to be an option, even on compassionate grounds.

It is now over three weeks since Taxol and I haven't had herceptin since July 28th and I am still reacting. I was in Emergency last Friday in order to get the reaction under control. I am now on prednisone and benadry every 4 hours. I want to get off the prednisone as soon as possible but when I stopped taking it (after 5 days) the reaction came back by the 3rd day. I was really hoping that things would be a bit easier during the break between chemotherapy and radiation. Sigh...

Walked with my family and friends in a fundraiser for breast cancer reseach today. It was really good to be part of something positive and hopeful.

Hi there Carina.

Congrats on the walk.

Yes the sun came out for our walk in Burlington too.... so beautiful with all the changing leaves! I am so sorry you are having these reactions.... it must be horrible for you!

Please keep us informed as to what they find out about your reaction I would be very interested to know what triggered it.

Again, congratulations on THE RUN FOR THE CURE today!

Lucky

herceptin and congestive heart failure
 

Transfusion reaction
 

Vikkis mom,

There is the FinnHer(sp?) study. They did it for 9 weeks with good results. Either search on this site or the www for more info. Best of luck to your daughter. BB