Steph,Lolly?Who was it?

[aquinis2000]

I remember reading a post a few weeks back about one of you ladies that had notable cancer, and for some reason could not take anymore chemo, and was treated with herceptin only. The post stated that your tumor (tumors) shrank while only on herceptin. could you e-mail me or post here. i would like to get more details, as i still have ca showing up in my liver and will only be taking herceptin. Thanks.

[Maryanne]

I believe Gina only takes herceptin and has for sometime now. You might want to email her as she is a wealth of knowledge.

[Barbara H.]

Hi,
I had liver, lung, and brain mets in May 04. After brain surgery I started Herceptin in July. I did not take Chemo because my daughter's wedding was that month. The Herceptin put my markers in the normal range and continues to work for me. Therefore, I have not added Chemo yet. I hope that I won't have to for a while. I may not be the person you were thinking about. Good luck with your treatment.
Barbara H.

[aquinis2000]

Barbara.......when you stopped your chemo was there still notable ca? were you ned besides the brain? and the herceptin has kept you stable for a year now?I think that is what you are telling me, if so that is great!!!!!! I hope to just keep these mets stable. I don't care if they are there as long as i can live mutually with them. dirty little buggers!

[StephN]

Dear Aquinis,
Did not mean to ignore your question and thought perhaps it was answered in the above posts.
Then it came to mind that maybe Trisha who has heart problems - but maybe not as she had to go off Herceptin as well I think.
There are a lot of different cases and details swirling around this board now and it is very hard to keep track of them all. It is easier to answer a post in front of me than to recall all that I may or may not have read.
Did you try a search with some pertinant words??
Herceptin should help - if not maybe another targeted therapy is worth looking into.

[Barbara H.]

Dear Aquinas,
I was treated in 98 with with AC and Taxol, and radiation. I was stage IIb/IIIa. In May of 04 I was stage 4 with mets though out liver/lungs/lymph and in the brain. (one 3cm left pre-frontal cortex.) The headaches are what clued me in that something must be wrong. After I had my craneotomy at the end of May followed by sterotactic surgery, my ocologist decided to give me Herceptin alone to see if how I would respond. He later told me that he did this because my daughter's wedding was in July. By the end of the summer my markers were normal and have stayed that way. My brain met seems to be gone, but I had to have surgery at the end of November for Necrosis. That was a real scare and the post operative inflamation as still not subsided. I have to have another MRI in March. Quality of life is important to me because I teach third grade full time, and I want to continue as long as I can. Herceptin alone allows me to do that. I did not take time off 8 years ago when I had chemo, but it was not easy teaching the week after my treatment. I don't think I could keep it up when and if I need chemo again. Because of my response, my oncologist has offered herceptin alone to two other patients for various reasons. Because stage 4 can only be managed, and is not curable at this time, each case has to be handled individually. I do believe the immune system also plays a large part, so it is important to keep that part of the attack working as well as possible, and chemo compromises it. On the other hand, there are times it becomes necessary to keep us going longer.
Best of luck with your decisions, continue to come to this board for advice, and I'm sure you will find the best treatment plan for you. Above all, don't take it too hard that you did not receive many responses. There are times when I know that I should offer my thoughts, and I am just too tired after a long day at school and work to correct, and curriculum to plan at night. I also feel guilty about not searching and learning more about the biological and chemical research involved, but again, I just don't have the time to explore it, and am grateful for those on this site who do.
Best wishes,
Barbara H.

[Lolly]

Hi Aquinis, like Steph didn't mean to offend by not replying but I didn't see your post until this eve. It isn't my case you were thinking of, as I'm currently on my third Herceptin/chemo combo for recurrence. I have been maintained on Herceptin alone in between chemo's but was considered truly NED only after the first recurrence treatment with chemo/Herceptin resulted in 2 & 1/2 years of NED. Since then have had stable disease, maintained by Herceptin with chemo occasionally added to knock it back as much as possible.
If you are going to try to maintain on Herceptin be sure to ask your onc what the plan is for monitoring possible progression, as you need to act quickly with liver progression.

<3 Lolly

[brittd01]

Hello! In January of last year, my Mom stopped Taxol/Carbo after 9 months b/c of neuropathy. At that time, her liver tumor had shrunk from 9cm to around 2cm. But her oncologist continued with the herceptin only. The herceptin alone continued to shrink the liver met. It wasn't until last August that a spot showed up on her spine that she began chemo(navelbine) w/ herceptin again. So to answer your question, the herceptin alone seemed to keep working on her liver but at the end, she progressed with one tiny spot to the spine. I hope this helps!

Brittany

ps. She's done very well on the navelbine/herceptin combo. NED in liver and spine met shrinking.

[Kim in CA]

Hi Aquinis,

Sorry I didn't post this sooner. I had recurrence with multiple mets to my liver in 2001. I was on Herceptin and Taxotere for about 8 months. At that point I was starting to have too many side effects from the Taxotere and after getting a second opinion at UCSF, it was recommended that I go off the chemo and just do Herceptin for awhile. The doc also said I should start taking Femara too. I was very concerned about doing this as my tumor markers were not yet in the normal range, but I didn't really have a choice. My markers did continue to fall and reach normal on just Herceptin. I ended up having liver resection at the end of that year because the one last spot on my liver would not go away and I wanted to be sure we got it all. Turns out there was no cancer there, just necrotic tissue.

My markers shot up again in 2003, and even though we couldn't find anything on scans we decided to add Xeloda to the Herceptin(which I had been getting every 3 weeks) and see if my markers would come down. Well, I couldn't handle the Xeloda and ended up in the hospital for about a week. The good thing is that my markers did go down and I have been NED in my body ever since. I did have a brain lesion pop up this past July, but we caught it early and successfully treated it with Gamm Knife at UCSF.
I hope this helps and answers your questions. And again, didn't mean to take so long to post this. Kim in CA

[aquinis2000]

I just knew there were ladies out there with success stories on only herceptin. My onc told me that another doc at the university of Chicago is treating 3 stage 4's with herceptin only right now. but i wanted to hear it from real people, you guys. I think this is invaluable info, that i will share with my doctor. I have been in a state of constant worry since being on just the herceptin, but am filled with the hope of keeping it stable now. Thanks to all of you. i'm sure i came across strong in my earlier post, but was "freaking out" as we all do. I do appreciate the technical info on the abstracts posted, but come to this board for support and reassurance when im feeling in crisis. the personal feeling on the main board is the reason i come to this site, and it seems as though it has been more of a medical journal than a support board lately. i regret my earlier "whining", as i know you all have some crisis of your own going on.Thanks for listening.

Hi Aquinis,
I have been maintained with Herceptin, various estrogen blockers for 3 years--I have bone and lung mets. I have had 3 rounds of radiation for bone mets and will eventually need chemo but my quality of life has been excellent. I had a recurrance after 19 years!
Kathy

[Tom]

Dear Aquinis,

I wanted to chime in here in response to your earlier post. My Mom, who many here know is 82 and cannot tolerate standard chemotherapy, has been on Herceptin alone for many months now. Eight months after her original surgery, which was the excisional biopsy of two 1.8 CM tumors, it was discovered that there was residual cancer in her axillary nodes that was not diagnosed duriong her first round of surgery. Biopsy of one of those nodes revealed that it was indeed HER2+++ ER/PR-. The surgery to remove those nodes resulted in a finding that 12/20 of them was positive, and not just on the microscopic level. There was also evidence of extra-capsular cancer, which is not good. So far, she is eight months out form that surgery, with no evidence of metastatic disease, although one would expect to see it somewhere having had such tumor load under her arm that went essentially untreated all that time. Her oncologist seems a little baffled that it hasn't popped up somewhere else by now.

I believe that with the Herceptin, which has driven her HER2 Serum Assay numbers lower, and the long list of supplements and vitamins, not to mention diet that I have concocted along with the great help of those dedicated members on this site and the help of the God that made us all, a situation that should be totally out of control by now, has been kept in check. It takes many hours of reading research articles and the message posts of all of those here who find themselves doing battle with this disease, to find a plan that will work for each individual.

On a side note, I can assure you that there are no "cliques" here, as with many other "clubs" and such in everyday life. These people are the salt of the earth, and would stop everything to offer comfort or advice to someone who needs it. I owe my sanity to this website and those who post here, members or otherwise. What I have found to be true of myself and many of those who write here, is that we go through stages where one week we are glued to the site, reading every post that is made almost as quickly as it appears. At other times we are consumed by running to doctors, x-ray appointments, and the many other things that people who are caught up in this disease deal with on a dialy basis. The single defining commonality of all of us, is that we either have breast cancer, or are caring and worrying about a loved one that does.

I have posted questions or comments here and had no one respond for days. I don't let it bother me because I understand, having been in their place at times. Other times I will post something that I think is mundane, and I will get dozens of responses in a few days. There are no VIP's here. We are all more or less in the same boat. It's us against the "Beast" as I call it.

So, returning to my original point, I believe that Herceptin is, for now at least, the single most important factor in the treatment of anyone with HER+ breast cancer, and will always be the cornerstone of the battle plan. I think most of those who write here will agree with that. Perhaps Tykerb (lapatinib) will take Herceptin's place down the road, but until then, it and my heroes that spent years developing it, will be the rock that I cling to for my Mom's extension of life. The cliche` couldn't be any more true, that "Where there is life, there is hope". I wish you the best with your treatment and I hope you will continue to come to this particular well to "drink." The water is refreshing and of a quality seldom found on God's green earth.

Dear Aquinis,
With regard to your comments about VIP treatment and cliques, I also am concerned. I have posted questions and have hundreds of views and no responses or maybe 1 or 2. I too have felt that maybe my question was of no value to others but then again they did view it.
I have not registered and not sure I want to. Just looking for info and support as this disease is so scary.
Good luck to you!

[Lolly]

Dear Unregistered and Aquinis; I'm glad you haven't given up on this site yet, I know sometimes it seems no one is "listening" but as Tom points out it very much depends on the traffic flow at the time of your post. You will get a lot of views as there are many, many people who read here but never post. As for me, I am on the site daily but I don't respond to every new post due to time limits. I don't work at a desk with a computer at ready standby so my computer time is squeezed into small blocks of time when I can take time to sit down at home. I hope you continue to visit and post, and there's nothing wrong with you "replying" to your own post with a "hey, what gives?!" type of query, if just to bring the thread back to the top of the list. That usually helps

<3 Lollyf