Question on Nevalbine

[Stephanie B.]

Hi

I don't post very often, but I read a lot. I have just recently been back on the boards - computer down and have been in and out of the hospital 3 times since last November due to mets.

Background
DX with IIIb Invasive Ductal Carcinoma - lumpectomy followed a week later by masectomy - 23 of29 lymph nodes involved. 4 weeks of A/C followed by 4 weeks of Taxol. Started Tamoxifen but stopped - not working. Started Herceptin. In Nov 2006 PET scan showed liver mets. Started back on Taxol. Finished Taxol and stayed on Herceptin. In May/June 2007 started having pain in my left groin area and low back. Finally in July/August my primary doctor sent me for xrays and CT scans - showed bulging discs and that my coccyx was offline. They sent me to a pain management doctor and we discussed putting in a pump, but that kind of scared me because he said if I happened to have a tumor there and he hit it I could bleed out! So I decided that the pain wasn't that bad and I would handle it with pills. In November I started getting worse until one day I couldn't walk. I ended up in the hospital for 4 weeks. Prior to this we were going to start me on Tykerb/Xeloda but put that on hold while in the hospital. They did MRIs and CT scans and discovered a tumor on my lumbar that was effecting my sciatia. I had radiation for 2 weeks and was able to start walking again. I was able to go home the week before Christmas. On New Years eve I was sitting down and couldn't get up again. I went to the emergency room and was admitted to the hospital again. This time I was there for almost 8 weeks. While there this time we started the Tykerb/Xeloda and also found another tumor on the sacrum and directly behind that on my spine. More radiation. I was released on Valentines Day. I wasn't completely done with radiation so I had to finish from home. They sent me home with Hospice/Home health to manage my pain and help me shower and adjust. I started feeling a lot better and was getting out and going places. We took the kids to Las Vegas in July and had a great time. When we got home my right shoulder started hurting and I thought I had just slept wrong. It got worse and worse until I couldn't move my arm. I must have been bad because my husband called an ambulance instead of taking me himself like he had before. Tests showed another tumor in the neck area and I was admitted to the hospital again. They were worried about fractures and made me wear a neck brace for 2 weeks. My onc decided to take me off of the Tykerb/Xeloda until after radiation. While in the hospital I had to have a pic line put in due to the fact that my port isn't working (first one quit working after 2 1/2 years and I had it replaced 2 times in 2 months and both malfunctioned!) I also had problems with my heart rate. While I was sleeping at night it would drop down into the 30s so I had to have a monitor on and they sent in a cardiologist and I had about 5 EKGS. They never did figure out why it was dropping and it got a little better. Now it is anywhere from 65-85. Anyway I went home after 2 weeks and finished radiation from home. My latest PET scan showed that the bones are much better - my rad onc is really impressed at how I respond to radiation. However, my liver is looking worse. I have been having a sharp pain on my right side under my ribs and my med onc said it is most likely the liver.

I am sorry about rambling - here is my question.
I am starting on Nevalbine on Monday. My onc wants me to get a pic line rather than replacing my port again. I was wondering what the side effects of the Nevalbine are. My nurse said we will need to watch the WBC and there would be nausea - but we will give anti-nausea meds. Will I lose my hair again? This would be the third time. I guess I will get a new wig if I do!

Thank you for your help. You are all so much more knowledgeable about all of this than I am.

Stephanie B.

[Mary Anne in TX]

Hey Stephanie!
WOW!!!!!
Unbelieveable story!
As for the Navelbine, I took it with herceptin and found it to be rather easy. I started getting my hair back while on Navelbine/herceptin, so you may not lose your hair!
Best wishes for good results with lots of hair!
ma

[Sheila]

Stephanie
My friend took Navelbine and herceptin for a year...no hair loss and no nausea...but had slight issues with her white counts.

[StephN]

Sorry your battle is so hard!

Navelbine was a good drug for me. I think most of my side effects were caused by the Taxol I took along with the navelbine and Herceptin.

My question is: Why are you not on Zometa if you have so much trouble with recurrences in your bones??? If not Zometa, some other bone strengthener??

I am really glad you have managed to fight back each time. Shows a very strong spirit.

[swimangel72]

Stephanie I just completed 4 months on Navelbine (I went every two weeks for Navelbine and Herceptin). The worst SE for me was diarrhea that lasted only about 4 hours the day of my infusions. My onc made me get a medi-port, but it was only used twice due to infection (after 2 months it was removed.) My infusion nurses were excellent - they prevented the burning pain in my arm by slowly dripping the Navelbine at the same time as a bag of saline. My hair thinned a little bit but I didn't go bald. My nails cracked somewhat - but I never felt nauseous so I didn't need any pre-meds. I think Navelbine and Herceptin together are really very doable - compared to stories I've read about other chemo's, Navelbine will seem a "walk in the park" for you.

[Julie2]

Stephanie,

I was on Navelbine two times once for 2 months another for 3 months. It is an easy chemo, I didn't take any pre-meds and you won't loose hair. Counts may drop a little bit, but I did'nt need to use the neupogen for it. But I had to put port for taking it.

Julie

[Stephanie B.]

Thank you for the responses. I feel a lot better about this now. I was having a "not again moment" the other day when I found out I was going to have to do chemo again. I would never think about giving up though. My kids (son 8, daughter 4) are what keep me going.

Thanks again

Stephanie

[jones7676]

I tolerated Navelbine very well and found it to be one of the easiest treatments to tolerate. I hope it works good and you can tolerate it well.

[ElaineM]

Sorry to hear about your ups and downs. Hang in there.
Regarding Navelbine. I took it with Herceptin for several years. No premeds !!! No hair loss. No nausea. Tiredness for 24-30 hours afterwards, but I was able to do basic things like meal prep. etc. I take prescribed supplements for my blood counts. No shots for that !!
I spent alot of time in the restroom the morning after for my weekly detox.
No major problems.
Take care.

[loveher]

Stephanie, as i was reading your post i felt like i could really feel your pain. i started thinking of my moms ordeal last year with her spine met and how she also got to the point where she couldn't walk either. god i can't imagine how hard it was for your family. its great to hear radiation worked well for you though.

Nalvebine/herceptin was the first thing my mom used after being stage IV and she was able to use it for almost 2 years! her wbc counts were low but so were her tumor markers. i hope you have great success with it as well.

take care Stephanie!

[Stephanie B.]

I start my treatment today. Wish me luck.

[swimangel72]

Good luck Stephanie - I hope you tolerate the Navelbine well and that it kicks your BC's butt!