Whats next?

Hi everyone,
All of your stories and information is so important and as I write the words the tears fill my eyes. I know that you are so brave and so stong and there are just too many on this website reading my note.
I'm about to travel across the country to go to a doctors visit with my sister. She is stage 4 her2neu. She is on taxotere and herceptin. She has had 4 treatments. She has mets to pelvis, spine, lungs. I am flying back for the results of her first cat scan of her lungs since diagnosis scans. I am very nervous for her, for me. I am staying positive, but she and I have discussed realities. I think I'm the one person she can do this with. We are both a little out of the loop of whats next if this regime has done nothing and it's spread. We've talked about Navelbine. How good is that? We're instant message freaks and spend too much time looking up studies, drugs, info, and IMing them back and forth. I don't think we're prepared for the bad. Is that ok? Is it really one step at a time? We were so progressive at the begining of all this. Each drug and the studies on them became daily readings. We've been coasting for some time now and I feel out of the loop.
Can my sister really live beyond 3 and 1/2 years?...with what we have to work with now? I want to really hear back from the people who've gone beyond the stats.....how many are there of you?
thanks for the frank info
stacy

[Lolly]

Dear Stacy and Sis; You are far from the end of the road, in my opinion.
There are many of us here who are Stage IV living great quality of life. Some have lung, bone, liver, and brain mets as you may know from the posts. Christine, our founder, is a 4 year survivor of brain mets, so don't throw in the towel yet!

The goal with Stage IV disease is to put it in remission or stabalize it, then the body will often acheive a balance and live in "harmony" with the disease for a period of time before needing more chemo to help quell recurrence. The key to this strategy for Her2+ is of course, Herceptin, which has changed the face of this disease for so many of us.

It's ok, in fact, essential to be hopeful and optimistic, while at the same time realizing the reality of the situation. That too is a balancing act, learning to live in harmony with this situation. As my husband and I like to say, "Hope for the best, but be prepared".

If she has to change drugs, Navelbine has a very good track record with lung mets, as does Xeloda. The two in combo with Herceptin is not unheard of. There are others, and I'm sure some who've had the same dx as Sis will post with some advice.

So, keep your spirits up, there's alot left to try.

<3,
Lolly

[TriciaK]

Dear Stacey, This is the place to come for support, encouragement, information, and love. I have been fighting BC for 20 years. A year ago June I had lung mets and thanks to navelbine, herceptin, and femara, plus a change in diet and lots of faith, my last PET scan a month ago shows no evidence of cancer. I will probably be on herceptin and femara the rest of my life, but it's no worse than being a diabetic on insulin. Take time to read back over all the threads here that interest you, there are many. Your sister is so blessed to have you at her side, and to have all that is available today to fight with. Be her advocate and get informed. We wish you the best and hope to hear from you often. Hugs, Tricia

[jessica]

Hi Stacey~
You've certainly come to the right place for information, wisdom, comfort & support! Tricia & Lolly have given you some great advice.The ladies (& men) on this site have helped me maneuver thru this reluctant battle since my diagnosis in 2002.
I have been Stage IV since primary dx - a single met in my liver. I had the unfortunate experience of discovering the first chemo combo I was on (navelbine+herceptin x 8 weeks) hadn't worked & the disease in my liver had gone from a single spot to "innumerable,immeasureable." What a tremendous blow that was. I was so incredibly frightened and disheartened after that.
But, we switched chemo combos (taxol+herceptin) & the disease melted away within weeks. I was NED for a year, but when a single spot did recur in my liver, 8 weeks of taxol+herceptin & I'm back to NED again.
I consider this a chronic disease & will live with it until I'm 110, because the alternative is NOT an option.Drug Research & Development will continue to provide us with new drugs, that are more precise, more efficient, less toxic & less disruptive so that we can carry on with our lives without devastating nausea & fatigue and WITH hair!
I certainly never thought that at the age of 33 I would have been diagnosed with such a thing as Breast Cancer! But 3 1/2 years later, I am still here, 79 weeks of chemo under my belt & mostly bald, but here all the same. While the stress of managing this disease can be really difficult, I've maintained my quality of life-I teach pilates & kept my schedule up throughout, chemo or no chemo.
My hair's growing back & my most recent scans are still NED. But I do know in 12 weeks when we scan again, circumstances may have changed. I hope not, but if they do, I know that I have all the tools-information, support, fortitude & faith- to get through it again.
Your sister is lucky to have you taking such good care of her! Encourage her to stay strong, but when she's feeling a little beat down, give her a soft place to fall. Best of luck to you both. Keep us posted on how your sister's doing.
Prayers, Faith & Courage!

[StephN]

Hi -
If your sister has those mets to her bones, I am wondering why she is not on Zometa as well. Unless her creatinine (a kidney function) is too high (over 1.4).
There are effective drugs she can take that work specifically for strengthening the bones, which are usually given with other chemos or Herceptin.
I still take Zometa, but now only every 12 weeks. And no reoccurrnace in my bones
There is also Avastin, which is a targeted drug which works by cutting of the blood supply to tumors. So, if Taxotere is where she is - there are lots of new drugs that might help her if this one fails.
BTW - taxotere was not a good drug for me, but Taxol and Navelbine, together with Herceptin put me at NED and there I have stayed for over three years.

All best positive and warm wishes to you and your sister as you beat this disease together!

[mamacze]

Dear Stacy,
How fortunate your sister is to have you; a rock to lean on and a confidante to melt down with. You can walk with her, both knowing the hopes and fears that are all stirred up in the same pot.
ANd then there you are facing that dam prognosis again...sometimes it feels like an ugly snake that keeps slipping back in my head. You may want to check out a book called (I think) "The making of Herceptin" and you will read about one lady who was in the original trial in the early 90's that is still alive today (Barbara)
Also read a book called "The China Study" written by a PhD at Cornell; who discusses the effects of diet on cancer.
Check through the relevant threads on this web site as I am sure you have already done.
Get second and third opinions until you have peace of mind that you have done everything you possibly can do.
What a blessing you are to your sister. Godspeed on your trip.
Love and Hugs,
Kim from CT