Navelbine

[Brittany]

Hello all!
Well, it turns out that last week my Mom did find out that her back pain was caused by mets to her spine and not a degenerative disc. Quick history: She was dx with b/c and mets to liver and lung March 04. She did 9 months of taxol/carbo/herceptin. She had very good results with this combo although she never reached NED. She has been on herceptin only since with continued shrinkage of her liver spot and her lung spots disappeared. But she began to have severe back pain about two weeks after her good scans in April. It's apparently one tiny spot on her T10. They plan to do 15 radiation treatments, start Zometa, and Navelbine?(sp). And continue with the Herceptin. She didn't want to tell me the truth because she was afraid it would upset me too much and she didn't want to ruin my wedding shower I had on Saturday. I wish she would have just told me the truth, since I kind of figured it out when she was being so shady with the details of the MRI report. Anyway, here we go again. I feel very hopeful and so does my Mom. Her doctors seem to be very positive too. She goes to Houston today and will add a brain scan to the rest of her tests. Thank your for always listening and please keep those prayers coming! Any info on Navelbine?? Her new tx will be Zometa, Herceptin and Navelbine. Please share any experiences.

Love,
Brittany

[StephN]

Hi -
A number of us on this board have had navelbine as treatment with great success.
Me included. However, I had it with Taxol as well as Herceptin. Was put on the Zometa after I finished with the chemos.
Some of us have been given Navelbine for mets to lymph nodes and some for other tumors (mine was in liver and starting into leg bones).
Navelbine is relatively easy to tolerate and some women have only thinning hair on this one.
Will the treatments for your Mom be weekly?
With just one spot - they should be able to knock that one out and the navelbine may take care of anything else in her other organs.

Congratulations on your marriage! It will be a lovely event, I am sure. ;)

[Barbara H.]

Hi Brittany,
I can totally relate to your experience from the viewpoint of your mom. I was first diagnosed in 1998. I started experiencing headaches in the spring of 04 and thought it was just tension because I tend to get tension headaches. However, they wouldn't stop and I contacted my primary care physician who sent me to a neurologist. I subsequently had a MRI which confirmed a 3cm brain met to my prefrontal cortex. My daughter callled from her car phone, and could tell that I was being evasive. She finally convinced me to tell her, and then she pretty much became hysterical. Later I discovered with a pet scan that I had mets through out my lungs, liver, skin and lymph nodes. I had surgery at the end of May, and started Hereceptin at the beginning of July. As I have stated before, my oncologist decided to start with Herceptin alone to see how I would respond to it, to allow me to enjoy my daughter's upcoming wedding in July. Herceptin has turned out so far to be a great drug for me. My skin mets dissapeared by the that fall, and after 3 cycles my tumor markers dropped to the normal range. I do not know if I am NED bacause my oncologist has not had me do scans other than 3 month MRIs. I am fine with that because I want as little radiation as possible in case I live to see research find a cure. Besides in stage 4 there is no real NED since there are always miro cells lurking around. I eat as many fruits and vegetables as I can, and eat as much organic as I can. Last fall I returned to teaching third grade, and had one of the best teaching years of my life. In spite of strep and everything else going around in my class, I did not miss a day of school except for workshops and conferences. During the year I don't find time to exercise, but I joined a fitness center and have been attending excercise class 5 days a week this summer. My goal is to keep it up during the fall. At this point, I fear that due to statistics my days on Herceptin alone may be numbered. However, I am grateful for my oncolgist for trying Herceptin by itself to see if it would work, and for the year that I have had. As a result of my experience, he has since provided this treatment option for 3 other patients.
I hope the navelbine works for your mom and that all goes well.
Best wishes,
Barbara H.

[Brittany]

Hi StephN! Thank you for replying. I remembered that you were on Navelbine and had good results. That makes me very hopeful! Yes, her herceptin and navelbine will be weekly and her zometa will be monthly. What is the thinking behind weekly as opposed to monthly?

Brittany

[Lolly]

Hi Brittany, hope your mom's scan's yesterday went well. I've had the Navelbine/Herceptin combo twice for lymph mets and found it very tolerable. I believe that the weekly protocol is desired with Navelbine as it reduces the side effects when it's given in smaller doses, but translates into greater effectiveness as it's more frequent. Herceptin appears to be as effective in weekly or 3 weekly doses, but since the synergy between Herceptin and Navelbine is greater when their given together, it's better to tailor the Herceptin dose to the Navelbine. Keep us posted on your mom :)

<3,
Lolly

[Lisa]

I think I'm one of the few women on this site who did NOT tolerate Navelbine well. I also took it with Herceptin and Zometa. I do believe it helped my mets (liver/bones), but it just made me feel yech. And I lost my hair, a rarity.

I, too, have a bone met on T10. I find it interesting that she has had hers radiated. I will definitely ask my onc about that possibility for me. Perhaps hers is closer to or on the spinal cord. Mine isn't and causes no pain.

What a mixed bag you're dealing with! Planning a wedding and helping your Mom. Hang in there and enjoy the good times for all they're worth.

Partial lyrics from a wonderful Sara Hickman song come to mind:

"These are the best of times, you say the worst of times.
Guess it all just depends what glass you're drinking from.
...
This is the best of times, look beyond the signs,
Don't let yourself be scared, don't let them make you numb.
This is the final day, each and every day.

We must never forget how blessed we are,
And though the sun may set when we least expect it to,
Remember all the times life was so sweet to you,
And in the end it will seem, life rolled by like a dream.

When I see you down, I want to pick you up, I want to give you hope,
And remind you of the best of times, Ah we're living in the best of times."

Love and light,

Lisa