Lets do a roll call on adjuvant Herceptin trial

Hi, Barb:

I was given the choice as to whether I wanted to include Taxol with the Herceptin. My oncologist did not think it would make a big difference in my situation. Since I was node negative, I decided not to do the Taxol.

After my second treatment of Herceptin, I am still having discouraging side effects--fever, chills, headache, diarrhea and blah feelings for three days.
I'm wondering if the weekly protocol would have less side effects than the every three week infusion.

I believe the trials show that adding Taxol along with the Herceptin gives even better results. My personal choice was to only do the Herceptin.

Linda

Especially To Linda BL,

If it is any consolation to you, as I take the higher 6mg dose that is the norm for the every 3-week protocol though I take it only every 6 weeks, I just wanted you to know that STILL, after 8 years of this illness, and after 6 years on some dosing or another of Herceptin, I many times get sick like you with fever and chills and horrible bone pain and sometimes stomach upset for 2 to 3 days following my herceptin infusion... I will just share with you what I have discovered about this...just my opinion.... What you are experiencing is a healthy and strong and to be desired immune response to Herceptin. Many times, over the long haul, folks who continue to respond like this live on for years and years. You probably have a healthy immune system since in my mind you made the RIGHT decision of discontinuing the chemo. Sounds like you are not taking the pre-meds either which again, to my mind is the RIGHT and only way to take Herceptin WITHOUT the pre-meds. Now, here is what my take on it all means....If you knew your tumor markers...you could see graphically so easily what I am going to convey. If you are still having pains like this...it means your her-2 is continuing to come right back up over the 3 weeks in-between infusions. This is a bit scary as it means your particular case is rather agressive but certainly managable with the Herceptin. As a general rule of thumb, the worse you feel after a dosing, the more tumor/lesion debris has been targeted by the Herceptin and the more the body has to clean up. The thing to be certain of, though, is that after each cycle, your markers are not rising, over time, slightly higher, slightly higher...as I have tried so many dosings over the years..I have lots of experience with this...the numbers gradually ease up over time and then you blink and suddenly they are doubling every week and you are becoming symptomatic again and kicking yourself for not doing this or that...blah, blah, blah... Take a deep breath, get an extra dose, get the numbers back into range and start taking as much or as little Herceptin as you need to be keeping them there...CA 27/29 around 10/ Serum her-2 less than 12...and guess what...with less tumor burden, less herceptin will "HIT" and so there will be less tumor debris to clean as less and less lesions are forming and guess what??? pretty soon, you'll be bouncing back from your treatments in as little as the next day. For Herceptin alone folks, remember diet, walking outside in the sunshine, certain supplements really can MAKE a big difference not only to energy levels but also in being NED and happy for years to come. Wish lots of good luck to us all, Gina

To LindaBL and Anyone Else:

Please tell me what your oncologist told you about receiving Herceptin at two plus years out of treatment.

I was diagnosed in April 2003, node-, Her2+, ER/PR +, 1.2 cm, lumpectomy, finished chemo Oct. 2003 and rads Dec. 2003, currently on Tamoxifen ...

I am now 50 years old.

I am currently in a Herceptin trial but was placed in the arm without it.

I received 4 treatments of AC and 4 of Taxotere.

My doctor called me last week for a consultation. He said he did not know if Herceptin would benefit me this far out of treatment but it was unethical not to offer it to me. He said he would do a PET scan and other scans - if I came out clear of cancer - he would turn the clock back to 2003 and finish the adjuvant therapy with Herceptin (IF I chose to). We do not know if our insurance will pay anything - that will be a major consideration.

This is a hard decision. If you or any of the others have any light to shed on it from your experiences please do so.

I wish you all the best in your treatments and hope the side effects decrease soon.

BarbaraL

Hi, I just joined your group, I had a lump removed, I am HER2 - Est-Neg. and the cancer was in one node. I had 8 treatments of AC/Taxol every two weeks and then 33 treatments of rads. I found out last July. I finished up in April of this yr. and said YES I made it. I was ready to have my port taken out. My doctor, then gave me the news that Herceptin was now available for Her2 patients. He said that I could take the treatments every three weeks for a yr. It was my choice. He was impressed with the trials.

Boy what a decision to make, damn if you do and damned if you don't. I was really on the fence. I did all the research and talk to a number of people and decided to go ahead and take the treatment.

Last Tues I had a test to check the condition of my heart, and I started the treatment the next day. I did ok, I just had flu like symptons, they were gone the next day.

I would like to know if anyone out there has started the treatment to prevent the cancer from coming back. Let me know------Judy from Md.

Judy

I am very much like you but found my lump in Aug 2004. I started Herceptin after everything was over in mid June (2005). I am also ER/PR + (and HER 2+). I also had one node affected.

I am doing the weekly herceptin but will switch to every 3 weeks shortly (in a couple of weeks)

Take care

Becky

Becky-Are you neg. for Estrogen? How come they are giving you Herceptin weekly and then every three? Did you have any side effects? DO you think that the day will come that we won't be doing drugs? Keep in touch, and keep well.--------oh yeah are you watching what you eat, I am trying to lose some weight . -----------JUDY

To BarbaraL

I am in the same boat as you. I was on a clinical study without the Herceptin. I am now asking my oncologist if I should receive the drug but I am now about 1 1/2 years out of chemo. They seem to think it won't do anything because of the time delay.

I was 2.2 cm, stage 2, Her2 neu 3+, node neg.

Have you decided what you're going to do? How are you tumor markers?

I have talked to my oncologist and the co ordinator of the study looking for answers. They're not much help!

I am so confused.

Kathy,

I am TOTALLY confused too. My oncologist and research coordinator have tried to help - but I believe the bottom line is they truly do not know. They have left the decision up to me.

One day I think I should take the Herceptin every 3 weeks for a year and then the next day I think I should not.

Today I am leaning toward not doing it. I will be out of chemo 2 years this coming October 2005.

I really wish I knew the benefit (if any) from taking Herceptin at this point. There are just no studies that I know of about women in our situation. It's anyone's guess.

I think about the hormone therapies - they block the hormone "receptors" for years after chemo or with no chemo at all. So I can't help but wonder if Herceptin might be able to do the same on the Her2 "receptors." But this is just me wondering - I have never read or heard anything that says this.

You asked about tumor markers - I guess I don't really know my status. My blood tests have always been normal. Is that how tumor markers are monitored?

Please keep me posted about your decision - I wish you all the best.

I would also appreciate any information from you or anyone out there that could help me with this decision.

Thanks so much for responding to my post - I feel less alone.

BarbaraL

To BarbaraL

I feel exactly like you!! It's really scary how much so. I talked with my oncologist and coordinator They both weren't much help. As you said there are no studies about being 1 1/2 years out. I was on AC & Taxotere. Had a lot of trouble with the Taxotere.

They are adamant about my staying on the Arimidex but why not the Herceptin.

Which study were you on? I was with UCLA in CA. My husband and I travel in our motorhome and I was in CA when I was diagnosed with cancer, so I did my treatments here.

My oncologist does the CA27.29 blood test to check my tumor markers. Mine go up and down.

Kathy

Kathy,
I am in the BCIRG 006 study. It is probably the same one you are in. This study is still going on. In fact my research coordinator called California and was told I would not have to leave the study if I chose to receive Herceptin - they would just do some extra paperwork on me and form a subgroup I suppose. However they would not pay for the Herceptin. She told them they should pay for it - HA. Anyway, I was glad that I would not have to leave the study after all this time if I chose to take Herceptin.

The research coordinator said that my doctor had recently gone to a meeting and a poll was taken among the oncologist there and the majority said they felt it would not be beneficial. However some did not feel that way. My doctor would not express his feelings one way or the other. However something changed his mind in August- because I asked at my appointment in June and he told me no. In August the center called me in to discuss receiving it only IF I wanted it. They said it was unethical not to offer it. If I had to read body language and gestures - I would have to say they they in no way discouraged me from doing it. What a way to make a decision this critical !!! HA! I still don't know if insurance will pay for the treatments - my doctor wanted to restage me again with scans before checking. I can't make myself make the appointment to be restaged. Something is holding me back.

By the way - I had lots of trouble with the Taxotere also - I think that makes me shy away from any sort of infusion type treatment.

Thanks again for your reply.

BarbaraL

Kathy and BarbaraL:

I DID decide to do Herceptin and I'm 2 1/2 years away from my last chemo. This website helps me feel positive about my decision. Even so, I am still feeling unsure about doing Herceptin because I am the furthest out from my original treatment in my oncologist's practice. It looks like a very long year! It's an emotional thing to be back in the chemo department--breast cancer is again constantly in my life.

diagnosed Oct. of 2002 with 2.4 cm IDC, neg nodes, ER+, PR+, Her2+

Lumpectomy, 4 AC, radiation and Arimidex

Like you, I went back and forth about starting treatment. When I was originally diagnosed, I wanted to get Herceptin but didn't qualify for the trial. It has been on my mind...After hearing about the great trial results, I called my oncologist and asked if I was a candidate for Herceptin. I got the same answers--no one really knows. My doctor went to the ASCO conference and has supported me in MY DECISION to start the treatment. He said he doesn't think it will hurt me but doesn't know if it will help either. I asked, if he were me, would he do Herceptin--he said yes (but didn't want to influence me). When my insurance said they would cover it, I started in June 2005.

I am on the three week schedule and having some minor side effects including being very hard to get an IV access (may need a port). If Herceptin becomes too much of a quality of life issue, I figure I can always stop.

My oncologist does not do tumor markers. The blood tests you have been getting may be for CBC (blood cell counts) and some chemistry tests for liver and kidney function, ect.

Linda

I'm also on the BCIRG 006. I see my oncologist in November again, so I'll bring it up again. Maybe by then there will be more answers.

Every time I see the MD I have CBC, complete metabolic workup and CA27.29 done.

I had gotten burns from the inside out from the Taxotere. I did not have the port put in originally because my veins were so good. Not anymore though! They are filled with scar tissue. I have a scar about 3 inches long buy 1 1/2 inches. It had been all blistered like I said from the inside out. The first time I received the drug I had 5 out of the 6 nurses working on me while the 6 got my oncologist. The gave me some type of drug for anaphylactic something or other. It burned so bad in the vagina area. My nurse said it was nic named the jalapeno douch! Really felt that way too! So the next time they gave it to me they ran it in piggy back with normal saline and really slow, that's when I got the big scar. My oncologist wanted to stop my chemo treatments, worried I might die. My nurse convinced them to put a thing into my arm running into my heart. Not the normal port. They then ran my Taxotere over a 5 hour period. The chemo lab became my home away from home.

That's all behind me now. But if the drug Heceptin would decrease my chances of reoccurence I'd go for it.

Kathy

Get a port, do the herceptin, especially if your insurance will pay. The up side just seems to outweigh the down side significantly. Don't look at it as moving "back into treatment", but "forward in life"

Sassy

Kathy
You really did have problems with Taxotere! I had lots of pain, numbness
(which I still have at a much lesser degree), and difficulty walking. My legs will never be the same – but I am definitely ok- I walk several miles a week now.

Thank you for replying. This is a sad thing to say but- I have several friends who have had breast cancer – but none of them were Her2 – and none of them had much trouble with Taxotere. Your replies have been VERY interesting to me.

Your questions and my writing replies have caused me to rethink this receiving Herceptin late ordeal. Thank you.

I am now going to reply to LindaBL about my current decision.

BarbaraL

LindaBL
Since I am almost 2 years out of chemo – your posts along with those of others have been an inspiration. In my post a couple of days ago – I stated I was leaning toward NOT considering the late treatment with Herceptin offered to me by my doctor.…… Well I suddenly felt guided (Divinely – I believe) into calling my oncologist’s office on Friday – he was not in but the receptionist is going talk to him Monday and begin scheduling the scans and tests I need to be restaged. Results of the restaging will determine the next move.

Thank you for sharing that your oncologist said he would do it if he were you.

I just read a post on this site titled “Herceptin Cost” by Sheila – it made me think about considering it even more.

This website is a blessing. None of us know each other but we are all truly sisters.

I admire you for “moving forward in life” as posted by Sassy. I hope the year of treatment goes fast and well for you.

BarbaraL

Thank you Sassy for your positive reinforcement! Right now I'm inbetween infusions and feel fine. But I'm not looking forward to the next treatment.

Barbara, Good luck with your decision. I was back and forth so many times...even now, after two Herceptin treatments. No one knows if Herceptin will help us "late bloomers". I thought I was the only one starting so late, but through this website, I have learned I am not alone. After reading the great Herceptin results, it seems to make sense that it would help any Her2 person avoid recurrence.

Helping me make my decision in the middle of my dilema, was a friend who unfortunately had a recurrence 12 years after her original diagnosis.

Even though I am outside the trial results, I hope other patients can learn from my Herceptin decision. I believe we will see more and more late Herceptin starters.

My BC/BS insurance is paying for Herceptin and I had no scans or restaging. The oncologist's office applied for me and the next day the insurance approved it.

Linda

Ok, Girls...smile..I HAVE to put input into this thread...

I really, honestly, truly, positively can tell you...it MAKES no difference HOW MANY MONTHS you are out from treatment...what you took...how long you took it...blah, blah, blah...what matters is DO YOU HAVE HER-2??? Is it active NOW??? Is it, even as we type to each other rising in your blood stream, just lurking there ready to set off all sorts of nasties???? I just can't get my head wrapped around the fact that apparently, the majority of the onc's out there are not even regularly monitoring your CA 27/29 and serum Her-2 levels together. The bottom line, though, is if YOU know at any point during these nightmares we have all experienced that YOU ARE HER-2 positive, you should be getting HERCEPTIN...period dot. I can not make it any plainer. For folks like us, right now, it is better than sliced bread. Still, I don't recommend over-doing a good thing. INSIST that your numbers are charted regularly. Take only as much Herceptin as frequently as necessary..too much can be damaging. Remember, so what if your markers were taken 5 months ago when you stopped CA or whatever and were "normal" . One number here or there means next to nothing...The CA 27/29 can be in the normal range, less than 38 and your serum her -2 can be over the moon...trust me...I have found out the hard way and suffered many needless mets because of this (original DX '97, mets and Herceptin alone since '99). Unless your CA 27.29 is consistently hovering around 9 and 10, GET CONCERNED...your serum Her-2 is worse and if you have enough her-2 receptor filled cells to be dumping the protein into your bloodstream, you have to get moving. You can drag this illness out many years...but YOU MUST STAY AHEAD of the her-2 protein over-production...remember HERCEPTIN is NOT a cure, merely a control...Think of it like insulin for Diabetics...As long as the diabetic person takes adequate amounts of insulin, he or she will put off the ravages of this horrible disease for many years...but if they don't take their insulin....regularly...well, we all know what happens...Tell your oncologists that where herceptin is concerned you want to follow the Insulin model. Fortunately, no need to take blood several times a day as many diabetics are forced to do...a simple blood test PRIOR to each dose of Herceptin is more than enough. DO NOT have the blood draw immediately after HERCEPTIN as sometimes the assaywill pick up the herceptin as her-2 and your numbers will LOOK HORRIBLE!!!...ALSO remember ONE number does not mean much by itself...it is when the numbers are charted OVER TIME that you begin to understand what is really going on. FOLKS, this is the 21st century...THERE IS NO NEED TO GUESS...as far as the difficulty being forceful with the onc's (who sadly don't KNOW what do in many cases...sighhh, not their fault, though, and many do the best can they can...) just remember this one thing: IT IS YOUR BODY, the ONLY one you will get in this dimension anyway, and it is YOUR LIFE. Gina, over and OUT...smile.

Gina, i think you are confused. These people who are discussing taking Herceptin have no mets at this stage i.e. they are still early stage BC. They are trying to decide whether to take it now, way after their initial chemo. i too am faced with the decision so i am very interested in the comments.
Also the CA 27/29 and other levels come into play most when you have mets and are screened three monthly.
Take care

I completed my chemo Nov 2002 and I just started Herceptin last week. I consulted 4 oncs - 2 in the US and 2 in Canada and they all agreed it might help and since I am ER/PR - this is all I have.

I have to pay for it in Canada, but I know I can't take it with me!

jjfromcanada,
What stage were you in 2002? Were you lymph node positive or negative?
Thanks for sharing your information!! It helps.
BarbaraL