her2

[jag]

hello-my mom had a tumor on her right breast in october and went to doctor-had mammograms -biopsy -all the normal procedures regarding a lump on your breast...biopsy came b..ack no cancer just mammary duct eclaisia..but doctor and mom decided to remove the lump.. mom had a lumpectomy and the lump was 2.4cm and cancerous..er-pr neg. and her2 pos..mom then had lymph nodes removed and 2 of 20 had some cancer cells..the first 2 from the lump area,the other 18 were clear-neg..so oncologist recomended chemo-therapy..naturally mom fears this as she is feeling great andhas heard what chemo does to you..surgeon who removed the tumor told my mom to take some chemo too that he removed all the cancer plus a little extra and all margins were clear..but the chemo is for her benefit...oncologist said in his opinon with chemo moms chances were 65-75 percent that the cancer would not return..without chemo 70-80 per cent chance it would..i asked the oncologist what are the per centages for women with bc that had chemo and the cancer never returned..he said only around 4-8 per cent..he wants to start my mom on 4 treatments of epirubicin and cytoxan followed by 4 treatments of taxatore...i asked why not herceptin and taxol for her2 as what ive read is working well with her2 bc..he said this is the protocol for metastic cancer...i said it makes no sense to wait for the bc to spread before using something that is working well...and no one knows that chemo will be of benefit..i asked him what he would use if he could use any drug for her2 bc patients...he said herceptin and taxol would be it..but for now this is not the standard treatment..i said if mom did no chemo and the cancer spread to liver-bone-would herceptin be used then ..he said yes-definitely..i told him i can not see why a woman with her2 bc be put through chemo only to have the cancer spread and then be given something that may be of more benefit to her...its a shame...mom said she thinks she will try the chemo...any one have any suggestions on how to handle side effects of epirubicin-cytoxan-taxatore....mom is feelin great --so we are hoping for good results...she is 66 years young....we just hate to see the chemo wear down her immune system and make her ill when she is feelin good... but we want her around for many more years so we want whats best for her...i told the oncologist i will be keeping up on everything ...thanks....may God bless you all...MERRY CHRISTMAS TO ALL YOU BRAVE LADIES...JAMES

[*_Meg_*]

Hi,

Your mom could get in a clinical trial with Herceptin and Taxol. I had a 2 cm lump no nodes and am in a trial. Chemo is not fun---but not as bad as you think. Drink LOTS of water,rest, and get nulasta shots. Cancer has changed my life for the better. Happy Holidays!

[Audrey]

Hi James, sorry to hear your mom has to go through all this. I was diagnosed several years ago with Stage III Her2+ breast cancer and was fortunate enough to receive chemo followed by a year of weekly Herceptin on a clinical trial and so far have remained cancer free..I agree with you that I think Herceptin should be available to women with Her2+ BC immediately--why wait until it has spread? Unfortunately, that's not the standard treatment yet, that's what the clinical studies are for... However, I have heard of some oncologists who approve of Herceptin for patients "off study", but I don't think insurance companies pay for it...worth looking into, though. In the event that your mom does not receive the Herceptin, I hope she does decide to go through with the chemo...the anti-nausea drugs are much better these days and I found the experience to be not fun, certainly, but not nearly as dreadful as I was expecting. She can get through this with the support of those who love her.. Hope this info, is helpful, Audrey

[Lyn]

Have to agree with you there, I can't see why we have to keep putting up with the middle man, I have been doing this since 1998 and only just now got around to being given the Herceptin/Taxol with Carboplatin, all the others only work for a short time and my first flare up was with a gland in the neck and they just kept on coming, just finished the 26 weekly doses and NED again!!! lost count now but the problem is it has never been for very long so if you can by pass all the other chemos becaue it seems that us HER girls seem to respond better with the HER/Taxol combos, peripheral neuropothy has been my problem this time around but doesn't effect everyone but I think because of what I have had Ac rads CMF, Taxotere, Femara, Xeloda, Navelbine, Her/Xeloda. Her/Navelbine Her/Carboplatin, Her/Taxol/Carboplatin is it any wonder that I have side effects, the other thing is I am in Australia and half of what I have had is not FDA approved here but I have a GREAT onc who agrees that I should have been dead years ago but we are doing something right so I get free range on my requests within reason of course, so now have to have biopsy to see if rash on neck is mets. We are all guinea pigs and if we can sav some of the ladies the grief of having unnecessary treatment when we know what is working for us you should be able to go for it. I also had, lumpectomy, radical mastectomy, 16 out of 16 glands all positive, not eostrogen responsive but HER 2 test was only done a couple of years back on skin mets biopsy, so had it been possible for me to have had that in the beginning, and had they know that HER/Taxol worked I could have skipped all the other, as it is Her/Navelbine isn't approved here yet but that hasn't stopped me and my onc. So stick to your guns, and if they say that they want to save it for later don't buy it because your mum can still have it again if she needs it plus new discoveries. Hope this helps.

Love & Hugs Lyn

[Lolly]

Hello James, and welcome to the group...It sounds as if your mom is doing well and learning how to sail in these new waters. I don't think any one can say what will be the best course of action for your mom, but the doctors are giving her their advice based on their knowledge and experience, so that has to be weighed very seriously. If she can get Herceptin with the chemo, either off-label or thru a trial, so much the better. If she feels strongly about getting it, perhaps a second opinion or third will take her to a doc who will prescribe it. Good Luck to her!

Love, Lolly

[Merridith]

Hi Jag:

You have excellent research on HER2. I agree with you that it appears from early research that herceptin and taxol might be the best most aggressive stance to take to take.

Check out the latest info coming out of the San Antonio Oncologists conference that is taking place right now. There is a link further down in this message board posted by "Joe". There is a study there showing some early benefit of that combo, all though from the summary it is not clear if they were using it on adjuvent cases.

I would also try phoning MD Anderson Hospital (I think it's in Philidelphia). They are also doing research using that chemo combo and they might have some suggestions or info that might persuade you onc to do the chemo combo.

As far as the chemo is concerned, a lot of how you react is the luck of the draw, but with the new anti-nausea drugs and anti-allergy drugs, the chemo won't be as bad as what as you imagine.

Check out the message board called "submitted articles" on this website. It is a fantastic research tool.

My suggestions to you for surviving chemo are:

Drink LOTS of fluids starting 2 days before you go in to treatment so that you are very hydrated and your veins are easier to find.

Get your teeth cleaned by the hygienest before you go in and consult with you dentist for special chemo toothpaste to use. (I used biotene = $12 a tube). This will help cut bacteria in your mouth and help prevent mouthsores which can be a big problem during chemo. Also rince your mouth with baking soda after every meal AND when you get up at night when you go to the bathroom for at least 5 days after chemo. It will save you a lot of misery because once you get them mouthsores they are hard to get rid of.

Make meals (soup is especially good for tender mouth & sensitive stomach!) ahead now while you're ok and freeze them so that you can nuke them on bad days.

Try to exercise even if you don't feel like it, because research shows that if you exercise you are better able to tolerate the side affects of chemo.

Good luck,
Merridith

[Sharon NYC]

I hope your mom is feeling good. It is great that you are looking out for her. One thing to consider about the chemo is that my oncologist told me that H2 cancer is more aggressive but also responds very well to chemo so it may be a good idea to try the chemo her oncologist is suggesting. I am having AC/ Taxol and and have two Taxol treatments left and it has been tolerable. I did not participate in a clinical trial but my Dr (NYU Cancer Center) has agreed to give me Herceptin for one year after my chemo (with no evidence of disease). Hopefully you can find an oncologist that is willing to do this for your mom. Also, one of the best pieces of advice I received from a breast cancer survivor before my chemo was to get a port. I had mine put in a week before I started chemo and it makes chemo much easier on the patient. Also, if you are at risk for lymphedema in one arm having a port will minimize vein damage to your one good arm that will need to be used in the future for blood draws. I know chemo sucks but most of the side effects are temporary and tolerable and it is definitely worth it because it can save your life! God Bless You and your family. I hope your mom is doing great!!

[*_AlaskaAngel_*]

I wish other patients were as aware of possibilities as you are, and that more of them were asking oncs the same question. Many of us do not ask enough questions before ending up in treatment. The current therapies with the taxanes have only been really widely used for about 3 years, so keep that in mind in terms of how successful they are or are not, as well as in terms of long-term effects from the use of taxanes (such as neuropathies).

If your mother has other health problems be sure to find out as much as you can about how women with those health problems who have had current chemo regimens have done.

MD Anderson seems to be at the forefront with your question, so as advised above, try to find out what you can about what they are doing. It might mean traveling there for treatment.

Best wishes,

AlaskaAngel

[StephN]

Hi James -
What a Good Boy you are - you deserve a plum pudding or something for helping out your Mom this way. You really got to the meat of her problem, and have your facts straight.

Just to clarify: M.D. Anderson is in HOUSTON.
You did not say where you live, but there must be a good clinic for a second opinion and perhaps a med onc that will go the Taxol/Herceptin route since the trials are close to publishing some results, as reported in San Antonio.

There was also some research presented at San Antonio on the subject of ER+ and ER- patients' tumors reacting differently to the same drug. You should be able to find it with Joe's link to the summaries and a search.

All the best for a Bright and Merry Christmas and good results for your Mom in the New Year.

[*_anne_*]

Hi James,
Your mom's dx sounds v. much like my mom's only difference was that 3 diff. onc. felt that it is crucial to have Herceptin early as it increases your chances for a cure. I wrote a long email to some one else regarding that there is no data yet on adjuvant Herceptin but I can tell you that going throug chemo is a small price to pay to get rid of this beast. Get a 2nd opinion about the Herceptin. Most her2 postive women with early bc want to be on a trial with adjuvant Herceptin. Good luck.