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

My nails are breaking after seven Herc. triples. I also have pain in both little fingers and my ankles and feet -- extremities. In fact, sometimes the little fingers fell like they are going to pop out of their sockets. My last exam, the nurse practicioner wrote this down. She says she tries to collect symptoms.

But here is an experience that reminded me that Herceptin is not like taking aspirin, which is how some oncology nurses and some oncs seem to treat it. I had a very busy week at work last week -- the major annual fundraising dance and silent auction for my social services agency. I'm very involved with planning. I also had Herceptin Wednesday. Usually when I have Herceptin I take it very easy for a few days -- leave work early, lie down a lot at home. This time I told myself, "OK, if Herceptin is as side effect free as I'm told, let's try full speed ahead." Ended up with cold, fever, exhaustion, coughing, etc. In fact, I felt as sick as I felt when I got chemo. Possibly my blood count went down and made me susceptible to germs. Who knows? From now on I will be very careful when I get Herceptin.

forgot to give my side affects from herceptin, which I have been on alone since end of April. Between herceptin and femara I experience memory loss, I lose things constantly and can't seem to relocate them, my hearing is not as sharp as before. Constant small joint aches, at times my fingers belong to someone else. Can't seem to do buttons, I get pretty fumbly. Fingers are extremely swollen in the mornings. Seems that the opposite hand (the right one) of the mastectomy is the one that seems more sensitive with the pain. Joint knuckles so bad I can't wear any of my rings on the right ring finger. I don't seem to have any swelling in my feet, ankles or toes which to me seems strange when your fingers feel so bloated. My weight also has gone up some. My thigh muscles hurt tremendously when going up or down stairs and found out last evening, also with dancing. As for body fatigue, has it been known to be any other way BUT tired, like you hadn't slept for days. I guess, it's still better than the alternative, still it can get you down having body, mind, hearing of an 110 year old. Just try to keep the humor up it does help.

Sue

herceptain side effects real or peceived
 

God, sue you sound like me. I am on arimidex instead of femera and also lupron which doesn;y help. I am curious about one thing ladies... does it make a difference in terms of severity of side effects whe you are on the once weekly or the triple dose of herceptain AND whe did the side effects start- how lig ito treatment.
I was on weekly from end of November 05 thru April - was handling it alright even thru rads util I took levaquin for a sinus infection - stopped that and went onto to triple dose and that is when the knees, thighs, fingers, elbows, shoulders really started aching swelling in fingers is relatively recent- memory loss- can't recall ( no joke).. 2 doses left --hopig some at least will go back.
any thoughts?

Susanne

Hi Lani,

12th dec marks my 3rd year on Herceptin.. 2.5 yrs Herceptin only.

I was dx in 2001 after finding a lump on my left breast.. grade3...18/24 node pos. Had mastectomy followed by various chemo+ clinical trial + rads.

I was dx in 2003 with secondary b/c on the chest wall, same side and it was only then that I was told about Herceptin and that I met the criteria.

I have terrible itching on various parts of my body, especially on the scar. I suffer from sinus problems, weight gain, small ulcers on my tongue, eye sight deteriating ( my optician say my reading sight has not changed in 2 yrs but my distance has changed drastically, poor nails (allways pealing and breaking) and lately I have suffered severe cramping in my legs. I dont have headaches except for about 2-3 hrs after treatment. Last week I had the strangest feeling in my chest, just like a hundred needles stabbing. It only lasted about 10 secs. I will be going for an echo on fri, so hopefully I will find out, the reason..

I receive Herceptin every 3 weeks over a 1 hour infusion.

Hey I forgot to mention how scatty my brain is at times (this is an example) but I was putting that down to age (55 in jan)

Geraldine

Geraldine...
 

Geraldine.

I was so happy to hear that you continue on Herceptin for 3 years. ( I know that sounds weird, but it gave me hope).

Leg cramps... I was told to increase my magnesium by taking mag/calcium vitamin and a multi vitamin with magnesium also. It has helped the cramps. I still get little ones in the mornings, but not the ones where you spring out of bed and try to shake or walk them off! Someone else told me she put a bar of natural soap in her bed by her feet... and it took care of the cramps for some strange reason! Worth a try.

The itching under arm on one of my scars is enough to send me through the roof! Funny... I never thought it might be Hercpetin...but ya, maybe it is!

I am also on one hour IV every 3 weeks. ( Going this Friday for onc checkup and chest xray and syma results and treatment).

Lucky

Side Effects
 

Have been reading with interest the many side effects from Herceptin. I have had most all of them. I finished Herceptin treatments two weeks ago and am looking forward to feeling better. My Muga scan has gone down to 48 so am very fatigued all the time. I did have leg cramps at night but believe it or not I put a bar of soap between the sheet and mattress and I have not had a leg cramp at night since then. It is an old wives tale but many people have found that it works (actually found a testimonial to this on the internet). I used Ivory soap but any plain type of soap would work fine. Hope this will help some of you who have leg cramps at night. Believe it or not it does work!

-Nina

Hi,

Just wanted to say that I also had bad cramps (feet and legs) tried the bar of soap a couple of weeks ago, my Mom suggested it from a friend, and I have not had one cramp in my feet or legs!! Also, if you have trouble with constipation, I tried a tea called Smooth Move, love the name, anyway it really works, it comes in fruit flavors, (didn't like the taste) and chocolate, (the best). Hope this helps someone.
Smile a mile,
Carol E

appreciative heart
 

Just browing over the latest posts and wanted to put in my 2 cents worth of what a great thing we ladies have here with all the information everyone puts out on what works and what doesn't and what other things to try to make our lives with cancer and it's aftermath a bit more easier and to realize that we are not alone or imagining our symptoms. They are real and we are not hypochondriacs, nor do we deserve the strange looks when we try to discuss our symptoms to the Oncologists and then get a brush off. They really should be involved in this site, so that they would have a better understanding of their patients. Just expressing my opinions while my mind is staying in one place at the moment. Thank you ladies for all that you do with your support, information, humor and just helping the rest of us get through the days.

Sue

I Had The Same Reaction. I Am Stage 2 With No Mets That I Know Of. They Gave Me Benedryl And Tylenol And I Settled Down And Was Able To Finish The Infusion. I Have Now Finished One Year Of Herceptin And Have Been Cancer Free For Over Two Years Now.

I am on Herceptin only and I experience the following:

1. trouble concentrating and trouble with short term memory also trouble with finding words - I know what I want to say but sometimes the word just won't come out or the words come out mixed up and sometimes backward
2. severe joint pain - sometimes when I get up in the morning it feels like my bones are just going to snap
3. dry, brittle, peeling nails
4. fatigue (low blood counts)
5. continuous runny nose
6. slight headache (was sent for a brain MRI -everything ok)
7. itching - various parts of the body
8. deteriorating eyesight
9. hearing loss
10. insomnia
11. weight gain

These are the ones I can think of off the top of my head. I know some people may say the eyesight and hearing loss may be age related but I totally disagree. I didn't have any problems before starting Herceptin. Overall, I would have to say that Herceptin and I do not get along. Since on Herceptin my entire life has changed -- I'm not able to to the things I normally did. I started out on the 3 week cycle and thought if I went every week it wouldn't hit me so hard so I started every week. I could tell you how I would feel each day -- the only time I felt almost normal was the day before my treatment. Now I have switched back to every 3 weeks in the hopes that I will have more than one good day a week. Had my first 3 week dose 2 weeks ago so I go back next week. So far, I don't notice that it's any better than weekly but I'm going to give it a chance. I just want to feel somewhat "normal" and be able to have the energy to do things.

I've been taking Herceptin since July of 2001. When I began Herceptin I was also taking Taxotere and Zometa. I took this combination each week for 6 months and continued the Herceptin and Zometa weekly for 2 1/2 more years. Since that time I've taken Herceptin and Zometa every three weeks. I lost quite a bit of hair, my eyelashes and eyebrows during the 6 months of chemo. To this day my eyebrows, eyelashes, and hair have not come back. I have contacted Genentech about this and they have called and talked to me about it.


As far as other side effects I do have watery eyes and on the day of the infusion I am a little more tired and occasionally I have a headache that day. Otherwise I really don't have any complaints.

herceptin reactions waning even on regular dosing
 

I love that we are posting these effects. It is such a comfort to know that I am not a hypochondriac (hopefully!) I am er/pr+ Her2 weakly positive, stage 3a, 7 nodes. diagnosed 5/05.
My side effects and if they lasted were;

1. Bloody, crusty noses. Almost completely gone now after 11 months on H.
2. Lack of mental clarity, forgetfulness. Worse than ever! I have a 70something friend and we compete for how many times during a conversation we forget what we are saying!
3. Rib pain, now gone..
4. achey feet and legs in early morning, late evening still...
5. rediculously peely soft nails still!
6. Tendancy to infections - difficulty shaking them even with high doses of antibiotics! Just had LAVH and my navel got infected from incision, 6 weeks out still yucky. Got a yeast infection that also is still there!!!
Anyone with that effect and possible help for immune system please write...
7. Most bothersome - breathing problems. When I was first infused the premeds made me very sleepy, every time I fell asleep the oxygen sensor beeped like crazy and they kept telling me to breathe. Same thing when I had all my surgeries.. like when I fell asleep I didn't breathe properly. I sense it when I am difting off now because I hear my blood roaring in my ears - I take a few deep breaths and it stops. Even during the day now I feel my heart start struggling and I take a few deep breaths and it stops. Now how is that for weird?
8. Herceptin emotional addiction! Once my Oncologist told me my year was up I went into a tailspin emotionally. Felt I was just not prepared to face life without my security blanket. Really funny thing was that Genetec gave out blankets w/Herceptin printed on them. I guess I will have to wrap up in that and get through this! No more tears now - I am facing a move and lots to do!

Maybe it's too early to post here yet as I only finished herceptin 9 days ago. (October 11, 2006) Naturally, side effects wouldn't be over yet as I received my infusions every 3 weeks. So, I'll have to wait a while. However, I can say that for the most part herceptin and I got a long real well. I only had one MUGA scan at the 4 month mark as my oncologist said "toxicity normally occurs within the first 4 months." At that time my MUGA was favorable so was told I could continue. They watched me for symptoms and I never had another MUGA. I exercised throughout (2 - two mile powerwalks per day) wih no problems whatsoever. The only side effects I can report are some diarehhea - gas - and left rib/side pain. From reading other people's posts I see that the left rib/side pain is pretty typcial. There must be receptors over there huh? Well, whatever, I'm not complaining. I pray it helped me and that I will be disease free forever. (as we all do)

Mary Jo

Kate, I have all the same side effects as you and add lower back and hip pain. I also experience chills for about a week afterwards. I have been on Herceptin since 7/06. I also tried the weekly and went back to the every 3 weeks just to try and get a few days of feeling "Normal".

I thank God for these message boards because my oncologist keeps telling me that herceptin has no side effect.

Jennid,

When I told my oncologist about my side effects she said "you shouldn't have any side effects with Herceptin." I told her she was wrong and that she should come to this site and check out all the side effects that are being raised. I too have lower back pain but I contribute it to my spinal fusion. Although since I started Herceptin I had to go back to my pain management doctor.

Congestive Heart Failure
 

Hello Vickismom, hope I got that right??
I went into Congestive Heart Failure and went down to 21%. My cardiologist put me on medications and we gave it a rest with the Herceptin for about 8 weeks. We redid the muga and they watched and worked on my medication to correct the hearts problems. I now take 50mg Coreg twice a day (strengthens the heart) I was on Digitalis to help the heart pump better but off that now. I take Diovan and Furosamide which take out the excess fluid so the heart does not have to work so hard. I am doing fine and this last muga I was back up to 60% but it has taken me a couple years to achieve that. I was carefully watched on the Herceptin by my cardiologist and am doing fine now. during that time they also found I had sleep apnea, so I have a cpap machine and oxygen throughout the night. I seem to be walking and breathing fine. Get a good cardiologist on your team.. it makes all the difference in the world.
Hugs and good luck,
Marily
oh and I was on Herceptin about 31/2 years when this happened so watch carefully it does not always show dammage at an early time!

side effects
 

Glad to find out I am not crazy

I have been on Herceptin for 4 1/2 yrs.
Side effects.
Finger nails split and thin.
Finger tips cracked (I now wear fake nails to protect them).
Toe nail fungus.
Can't sleep
Medicinal "smell"
Runny nose especially when I eat something
Horribly dry eyes
Vision problems especially after treatment
Memory issues
Trouble speaking - forgetting words or completely drawing a blank. Also using wrong words or thinking one thing and saying something completely different.
Muscle and bone pain
Bloating and weight gain
Digestion problems
Congestion
ringing in ears
Prone to stomach and sinus disorders
And now my hands and feet are peeling. They burn and itch and even slightly warm water feels like it's scalding hot.
el

Oh boy elcalabrese does that sound like me! I am very happy for the Herceptin and will certainly put up with the side affects dont get me wrong. But in my case it seems that it has also disrupted my ability to find gainful employment due to the cognitive stuff that I seem to have going on. I cant even imagine trying to learn a new skill these days or multi tasking or working in a fast paced environment. The madening part for me is that possible side affects such as these dont seem to be recognized by the medical community. AND if you are stage IIb and doing well physically, SS disability does not recognize the difficulties either.
Well one day at a time one foot ahead of the other huh.
Bobbi

Moving this up
 

Since we have so many new members, I am taking the liberty of moving this thread up. I'm sure that the "newbies" might find it helpful.

Hi,

I've been on Herceptin alone since April 2006. At first it was weekly; then I switched to every 3 weeks. My symptoms are as follows:
- Diarrhea
- Joint pain, particularly in my hip. (I actually have lots of joint and muscle pain throughout my body! But since I have arthritis, it's hard to say what is due to the Herceptin. The hip pain began after Herceptin was started.)
- Fingernails that split and shred
- Intermittent dull headaches
- Increasing problems with finding the right word and with thinking clearly
- Runny eyes
I was diagnosed 12/05 with Stage IIIA, Her++, ER negative, cancer found in 4 lymph nodes. I had 6 wks of chemotherapy and 6 wks of radiation.