I am starting Herceptin/Taxol am Stage 1 !!

I have been unhappy with my "brilliant" oncologist. Very good credentials but unwilling to do anything not recommended by the large breast cancer centers. And if I got Herceptin, (he wouldn't look for a recommendation for it, I would have to get MD Anderson or Sloan-Kettering to recommend it), I would have to pay upfront and fight it out with my insurance company. I decided to interview oncs and went to my local hospital based oncology clinic. I am Stage 1 -- er/pr negative HER2/FISH positive, no node involvement had lumpectomy, December 2004,radiation treatment and turned down A/C chemo. The onc at the clinic is a fill in until they can find a replacement for one that just left to go to Sloan-Kettering. He was retired, probably in his late 70's. He said when he first began there were 7 drugs to give and now there are 35. I was told by a doctor to find an oncologist that had been around awhile and that they would be much more willing to treat with what they thought was best--not just what the accepted protocal is. Seems they were right!

He asked if I were against chemo and I said, no. But I wanted the right ones. He said Herceptin really seems to be the one I would need, based on the May conference (I was happy to see that he had kept up with the news from the conference) and I said "Yes," that I would like to get Herceptin but couldn't. He said that it may should include chemo, and I said yes, Taxol or Taxore--I was aware of that and willing to do it. Then, he said--he would get it for me and that there should be some trial for it. But based on this group and my previous oncologist, I was doubtful. At that point he brought in a woman from "Research" and she said she would see what she could find. I told her that I didn't think she would find anything but that I have been told that Genentech had a program to pay if my insurance wouldn't.

Well, it didn't take her long to find out that there was no trials but that there is something called, "Single Point of Contact" that will fight for my BC/BS to pay for it and if not Genentech will pay for it. It seems to good to be true but I am going to proceed as if this will happen!

When they said I could pick the date for the infusion, I picked August 8. They would have started next week but I need time to think and see if this is all just a dream! I remembered, from info on this group, that I needed a MUGA scan and called the clinic and the doc said it was a good idea--that it was better than an echo test. So that is scheduled for this Wednesday.

I also took the researcher information about the Bayer Serum test to see if she could get that for me. Are there any other tests any one could think of that I need? I just had an MRI on my neck, yesterday due to it feeling "not right". I sure hope it is negative but at least I will know. Of course if it isn't, then Blue cross will pay, no problem I guess.

Does anyone know what is considered the absolutely state of the art treatment at this point? Taxol, taxtore, any possibility on the new one, ABRAXANE? Has anyone had this in combo with Herceptin, ideas on whether it would be a good choice or know where I can research it further-- I will try to get ahold of the company, too.

Anyway, my head is reeling. Going from saying no to chemo, because it was just A/C to this? Big change. Were there any clinical studies where just the two drugs were given and nothing else like A/C?

How many treatments of Taxol? We didn't discuss length of Herceptin--if figure an new doctor will be at the clinic before that decision will be made but I will try for one year.

What kind of drugs will I, or should I, receive in addition the Taxol/Herceptin. Any steriods? etc.? I do not want to gain weight. It took me three years to lose weight, I have the best wardrobe in my entire life and I don't want to grow out of it. Some of you can understand this feeling, others will think it silly. Silly or not, I don't want to gain weight and wouldn't mind losing 5 more pounds. ;-) Hair will probably thin or lose with Taxol? right? Any other side effects I should expect--I know the neropathy from Taxol.

What about supplements? Anyones recommended to take--or not to take?

Advice needed. Thanks everyone, and especially, Joe for this site!
Janet/FL

Why not go for the whole regimen as adriamycin is a great drug for killing HER 2 positive breast cancer. Discuss the 4 AC followed by 4 taxol with Herceptin and Herceptin going out a full year. This was the trial and there are stated results. Go for the cure if you can get someone to give it.

The commitment is in the year of Herceptin anyway and that's a must.

As far as weight gain, I did not gain any weight and actually lost 30 pounds during AC/Taxol. I walk 4 miles a day and watch what I eat (very low fat and lots of veggies and fruit - high fiber (and I am post menopausal and on Arimedex which I thought would be worse)).

I feel walking is good for you and in keeping your ejection rate up during Herceptin.

Good luck and great that you are fighting for yourself. Its weird how doctors don't want to save your life even though it is their job.

Best regards

Becky

Good morning Janet,
You were up early, I was on one of the arms with Genentech's study, I took Taxotere and Carboplatin and Herceptin. This was a good combo, because After the initial 2 day start, they were given on the same day. I had 6 tx. I also had the Herceptin for one year. If you are interested I can email you the protocal sheet of when to get your muga scans and chest x-rays, etc.
Unfortunately, for some reason that arm of the study has never been posted for results. I am almost 2 years out and NED. In my release form in the back ground research it just said it had (not verbatim) showed some promise. I have done searches on this combo on PUBmed and most of the studies were done on met patients. A lot of people have told me this is a great combo but I haven't seen anything yet. I did loose my hair and I did gain weight about 25#'s. I had to take decadron and God know what else they all stuck in me with those bags hooked up there. I was tired and achy, to the point that I felt like a train had hit me, but thank God, I didn't get any neuropathy. With each combo there is going to be risk, I had good muga's all the way through treatment.
I was stage IIB and had lymph node involvment. I guess I would ask if you would be ok just getting the herceptin?
The Bayer serum test, is harder to get, because right now it's only for met patients.
You will get all kinds of advice on supplements, be sure to discuss them with your onc. I have read that B6 is good with the taxanes, but my onc didn't want me taking anything that could intervere with the chemo, afterwards was just fine. Good luck, I am glad your getting Herceptin. I wish the best in finding the right combo for you. This group if anyone can point you down a road of experiences and or research for you to make your own decision. Best to you. k

Hi Becky and Kristen
Thank you for your thoughtful replies. I was up early--3AM--as I crashed early after taking Benedryl and Ativan to combat my claustrophobia in the MRI machine.
I appreciate the thoughts of adding more chemo drugs but doubt if I would go for more without proof of metastasis. Or studies contrasting the different regimes.
I feel better now than I have in YEARS! Before BC I was sick all the time. Exercising would lead to illness almost every time I tried to get in shape. I still have trouble exercising. Three days ago after doing T'ai Chi I fell into the pool and did a little muscle damage! So, if it isn't one thing it is another. LOL

Kirstin writes *** If you are interested I can email you the protocol sheet of when to get your muga scans and chest x-rays, etc.***
Kirsten, I would very much appreciate these as I would not have gotten a MUGA without my having asked for it. busybeaks@aol.com

I was reading that the Taxotere is a very hard on the body drug and that Taxol is easier. Abraxane maybe easier, but I think still in clinical trials. I wonder if it has been used with Herceptin. On another list, someone there is getting Abraxane and will follow it with Herceptin. She said it is in a clinical trial.

I would consider Herceptin alone. I just wish there were any information about it. :-(

Janet/FL

I was also in Genentech's study in the arm that took Taxotere and Carboplatin (6 treatments) and Herceptin (one year). I just had a follow-up visit with my onc. and she told me that they expect to release the results from this study in Dec. The results are very good and she feels this is a very good combo. I was dx Dec. 2003, stage IIa, no nodes, er/pr-, HER2 3+ and am still NED.

Good luck to you.

Bonnie

Hi Janet,
I'am also stage 1c, no node involvement, but er/pr+.I have one more taxol/herceptin combo to go at this point.My treatment plan so far has been lumpectomy, 4 AC, 4 taxol/herceptin. I will continue on herceptin for at least one yr. and do rads.My onc. highly suggested AC, but felt I could have skipped the taxol.With all the new info on the combo of taxol and herceptin I did not want to miss the boat.
I have went from 120lbs to 136lbs.I think this was mostly caused by the decradron.I also have to admit I was too depressed to do my normal activities when first diagnosed.Now that I have started to walk again, I have not gained anymore weight in the last month.
I felt terrible on AC, but have done fairly well on taxol.Taxol has given me alot of bone pain on days 3-5.I have just noticed downy fuzz starting to come back in on my head, but the taxol has thinned my brows and lashes.I have had no nueropathy.
We all have to make our own decisions.I pretty much went with the advice of my medical panel, but decided to iclude the taxol on my own.All in all I believe I have done well on both chemo's.I'am still in treatment, and actually feel fairly well.Best of luck to you.
Michelle

http://clinicaloptions.com/onco/conf...05/cs/9005.asp


I did not copy this as a direct link but this study goes over the HERA trial but all participants did receive some type of chemo and then had Herceptin alone (not in combination with chemo as in the USA trials). This site requires you to register which is no problem and has some search capabilities on studies and trial reports. Maybe you can find something but I am not sure anything with Herceptin as an adjuvant (alone without chemo) has been done.

Becky

[StephN]

Hi Janet -
I am glad you have taken the reins and are being more proactive with this disease. SO great that you have found a med onc that is on your side! They ARE out there and sometimes we just have to hunt for them.

Taxol seems to be the drug of choice for the studies with Herceptin. For adjuvent chemo I had Taxotere after Adria, and Taxotere was a very hard drug for me to take. I had to cut my dose the last two times, and had terrible flu symptoms.

When my liver mets appeared 6 months later, Taxol was given with Navelbine and Herceptin. This was on a weekly basis and much easier to take even with the addition fo Navelbine. Taxol also did the job against my cancer and the neuropathy was not too bad considering that I took it for 7 months running.

Go for it. I think you are in the right frame of mind for your body to accept the drugs and chase down any cancer than may be lingering around.

Hi Janet,

I am also Stage 1, no node involvement, ER+. Grade 3. Her2+++. I was in the middle of my AC when the news about the clinical trials erupted, and within two weeks my onc. had agreed to give me Herceptin beginning with my Taxol, which was already in the plan. I have been receiving Taxol + Herceptin weekly x 12. It is my understanding that this is the preferred protocol from the trials. Then the Herceptin continues weekly for the remainder of a year. I also agree with Becy that the 4 doses of AC would be a good idea before the Taxol/Herceptin routine. AC is a powerful chemo against HER2/NEU, and the eight weeks is rough, but doable. You will loose your hair with the Taxol anyway. If you are going to go for eradicating the possibility of ever having to go through this again, possibly as a stage 4 patient next time, do all you can do now. Eight weeks in the big scheme of things will seem like nothing down the road. I have read way too many horror stories of stage 1 HER2Nue's suddenly becoming stage 4. And remember, there is a percentage of people who do not respond to Herceptin for an unknown reason. After to AC, the Taxol is a breeze. When receiving it weekly the dosage is cut to 1/3, and short of some muscle aches on day 3-4 and feeling like I'm always "buzzed" from the steroids it is very low side affect. I don't take any naseau medicine, I have my treatment on Monday, feel great on Tuesday and then a little achy on Wed, Thurs, back up to just about anything by the weekend. The first week or so was a little rough, only two weeks out from AC and the first herceptin dose is double and can carry some one time side affects. Also the premeds take some getting adjusted to. They are benedryl, the steroid and pepcid.

Best luck to you in your decision, but some unsolicited advice would be if you are going to go for it go all the way. Then you will know you have done all you can do.

God Bless,
Cheryl

Cheryl and Becky
I do agree with you that AC first would be good, but at this point I don't think I will go for all of it. I am going to consider it hough since you mentioned it. Neither onc has mentioned it.

I do have to talk to this onc again and see what his plans are. I wonder if he is thinking Taxol + Herceptin weekly x 12 then Herceptin for a total of one year. If anyone else has an opinion, please tell me as I want as much info as I can before I start. I don't want to have regrets. If there is anyone to contact let me know and I will call, such as anyone at Genentech that would know anything about what might be a protocal.

Steph has said>>>
always get a can of cranberry juice, a bottle of water and a patient lunch from the fridge when I come in. Bolt down the cran juice even before getting accessed. Then I start sipping the water. I finish one 16.9 oz bottle of water and start another in the car on my way home.
>>>>>>>>>>>>>>>>>.

If anyone has any other advice please let me know. Also, Steph, what kind of lunch are you having to eat during this? I doubt if my place will provide food, so I want to be prepared.

Janet/FL





have been receiving Taxol + Herceptin weekly x 12. It is my understanding that this is the preferred protocol from the trials. Then the Herceptin continues weekly for the remainder of a year. I also agree with Becy that the 4 doses of AC would be a good idea before the Taxol/Herceptin routine. AC is a powerful chemo against HER2/NEU, and the eight weeks is rough, but doable. You will loose your hair with the Taxol anyway. If you are going to go for eradicating the possibility of ever having to go through this again, possibly as a stage 4 patient next time, do all you can