Decisions, decisions

dede10 · 08-28-2006, 04:04 PM

Tomorrow, I will be seeing my onc & suppose to be getting my navelbine & herceptin. I have had such a terrible time with the navelbine, though, and the pain! I hurt so bad, sometimes, and even now, 2 weeks since my last dose, my legs ache...especially my (r) one. My knees are the worst.

I am thinking of discontinuing the Navelbine, but keeping the heceptin, of course, and asking him to change to something else. I quit gemzar a month before I started navelbine. I know Navelbine is suppose to be easier, but it hasn't been for me.

I surely could use some opinions

sharonf · 08-28-2006, 05:45 PM

Hi, I am very sorry to hear what you have been thru with Navelbine. When my mom got her one and only Navelbine infusion last year (she switched to Taxotere due to the side effects even Navelbinet worked well), she also had terrible side effects like body ache and diarrhea. She then went to an acupuncturist who did acupuncture, acupressure, and foot Reflexology for her and that had really eased her discomfort significantly.

Maybe you could also try acupuncture to help managing the pain? Just want to share my 2 cents...

Wishing you the best,
Sharon

Lani · 08-29-2006, 12:53 AM

It is over the counter (no prescription needed) It works on joint inflammation or nerve inflammation (which may or may not be your problems--but if he cannot think of a reason why not, the worst that will happen is that it won't work!) AS AN NSAID (NON STEROIDAL ANTIINFLAMMATORY MEDICATION) IT HAS THREE BENEFICIAL EFFECTS IN BREAST CANCER PATIENTS: IT IS HAS ANTIAROMATASE EFFECTS, ANTIANGIOGENIC EFFECTS AND PREVENTS PLATELET AGGREGATION AND THUS PREVENTS BLOOD CLOTS--ALL PATIENTS WITH SOLID TUMORS ARE AT AN INCREASED RISK OF BLOOD CLOTS IT SEEMS.
THEY ARE GENERALLY ADVISED AGAINST IN THOSE WITH A HISTORY OF ULCERS, KIDNEY DISEASE OR LIVER DISEASE BUT THEY ARE CONSIDERED SO SAFE THAT THEY ARE ALLOWED WITHOUT A PRESCRIPTION.

HE/SHE MAY WANT YOU TO TAKE A DIFFERENT AMOUNT THAN THAT LABELLED (or perhaps he/she may not want you to take them at all) but if it might allow you to take the treatment recommended which you otherwise can't tolerate...????

I have NO personal experience of your problem whatsoever, so my suggestion is just a theoretical one...but perhaps worth checking out.

Hope this helps in some way....

al from Canada · 08-29-2006, 07:21 AM

Dede,
I would consider switching to xeloda, it has been shown just as effective as navelbine but way friendlier. As well, it's an oral med which may also simolify your life.
Good luck,
Al

Esther · 08-29-2006, 09:32 AM

How long have you been on Navelbine? The pain for me abated over time until I didn't feel any body aches at all while on it.

At first it was very painful and I took heavy pain meds to cope with it. Navelbine is a great treatment option and if at all possible I'd try to hang in there with some help from pain meds to see if the situation improves for you. It may take months, but eventually your body does adjust to it.

I was able to ski for 10 days in Aspen CO while on Navelbine.

dede10 · 08-29-2006, 10:46 AM

Well, back from the doc's office, and I couldn't do chemo anyway this week, my counts are still too low, after 2 weeks. Here is the way it happened: First week, ok, and second week was given as rx'd. 3rd week, counts too low, so skipped that week. 4th week, navelbine (which would have been my regular off week) then skipped a week, and then we come to this week. Again, counts still remain low. He wants to start back up, again, next week, and cut the dosage. If i am still having a hard time tolerating it, then we will decide what to do from there.

I was on Gemzar, and although I was tolerating it OK, my counts would stay too low to give on a therapeutic basis. I am a little worried about my bone marrow.

VaMoonRise · 08-29-2006, 02:12 PM

DeDe,

I am so sorry to hear about what you are going through. I don't have any experience with these particular drugs but want you to know that I am sending good thoughts your way and praying that things will improve for you. Hang in there Sweetie.

Love, Hugs & Prayers,
Nicola

vickie h · 08-29-2006, 07:41 PM

Dear DeDe, I, too have just started the Navalbine, and after 2 doses my counts were too low to continue to the third. I took last week off and now will go on Thurs to see if they can give me a dose then. They are talking about 2 weeks on, one week off, or lowering the dose altogether. So far no bone pain, but alot of fatigue. I wish you well and pray we both get the doses we need. Love and hugs, Vicki h