navelbine and gemzar side effects

[Lida]

Hi her2 members,
I am new to this group but not to bc. I have been dealing with bone and liver mets for several years. I have taken Herceptin with the Taxanes and with Xeloda and with some aromatose inhibitors. Though my most recent tumor marker was very good (ca27.29 of 12), and my spine was stable, I received surprising and distressing news! My disease had progressed in the liver, and I have to change chemos (from Xeloda). I am looking at Navelbine and Gemzar. Can you tell me how each affects the blood counts (red and white) and neuropathy in the hands and toes. I think I can get some honest, down to earth and wise thoughts from this group. I really would appreciate hearing from you. Lida

[Julie2]

Hi Lida,

I am on Navelbine and Herceptin for the past two months. My counts are not very low so I didn't need to take Neupogen till last week .They just became borderline low now. The side effect I had is fever(below 101) on the 3rd day after chemo for two days and some body aches.

Julie

[Carolyns]

Hi Lida,

I was on Gemzar and Herceptin 2 weeks on one week off. The first round was going to be 3 on and 1 off but my counts dropped too low. After we switched I didn't have a problem...just a little tired. I don't know if I needed it but I always took Zofran too.

Good luck, Carolyn

[kareneg]

Hi Lida

I was on Navelbine and Herceptin and never had a problem with blood counts. I have not had Gemzar yet but women at my treatment center that I have met had some problems like a low platlet count. You are in my thought and prayers that this combo works and works great at kicking the cancers butt!

[Lida]

Dear Julie,
Thanks for your reply. What type of dosing are you on? Do you get 3 weeks on and 1 week off? Did you still get the fever every week? The onc office here says we have to contact them every time our fever is over 100.5, so I am concerned I would be contacting them every week.(I was just wondering if you get the fever due to a more aggressive dosing.) Lida

[Julie2]

Hi Lida,

Yes, I am on 3weeks on 1 week off. I get fever the first week and the second week and not much on the 3rd week. The off week is a pretty good week, I almost feel I am back to normal. I think my dose is a standard dose. My oncologist said the fever is very uncommon, but I happened to be the person who gets it.

Julie

[Kavy]

Hi, Lida,
Sorry to hear about your liver mets. Hang in there.
I was on Nalvabine /Herceptin for liver and lung mets for 1 1/2 year. It was 2 weeks on, 1 week off. I did not take premedication. The side effects were minimum, no hair loss, mild nausea the first few days, but I did not need to take any nausea medication. I felt tired the first few days, then I was ok again, but I did not have the same energy I had when I was on Taxotere. My legs felt heavy after many months on this combo, and I experienced more tingling in my hands and feet (neuropathy). My blood counts sometimes were low, so I had to skip treatment, and sometimes I had to take Arasnep for low red counts. The several liver mets I had were gone after 5 months of treatment, and the lungs mets were shrinking and disappearing too. So I stayed on this combo for 1 1/2 year, and just recently I had to change the combo to Gemzar/Herceptin, because the lung mets were growing again. I just had a few treatments, and I have 2 weeks on, 1 week off. No premedication either. So far my counts are ok, except for my hemoglobin that sometimes is low, right now is 10.7, but I still have received my treatments. I feel very tired the first day in the evening, and less tired the next day. The nausea problem seems to be the same, I mean, mild nausea the first few days, no need of medication. In fact, after I have chemo I cannot keep my stomach empty, otherwise I feel nausea, but when I eat something the nausea goes away. So the medicine for my nausea is food LOL . I few less tired with Gemzar compared with Nalvabine, the heaviness in my legs are much better. And also no hair loss with this drug.
I hope you choose the right combo for you.
Take care,
KarlaV.

[jml]

Hey Lida~
Ugh! Liver mets...so sorry. I battled "innumerable, immeasureable" for a year on 3 different combos, including Navelbine+Herceptin. Unfortunately, that NH wasn't effective for me & my disease progressed, BUT once on Taxol +Herceptin, I found my disease melted away & I found my way to NED.
I was NED for a year, before a single, very stubborn liver lesion recurred, receded, recurred, etc. I eventually had a liver resection in 12/05 & my liver's been NED ever since-THANK GOD!
I recently started back on chemo, due to a couple of supraclavicular nodes showing new activity. This time we're trying Gemzar + Herceptin, b/c I really don't want to be bald, again.
That Gemzar is NO JOKE...after 1 treatment, my cbc's were all knocked below the approved level for treatment & we had to get special approval from my onc to go ahead w/my 2nd dose.
I feel pretty flu'ish - achy eyeballs, chilled, fatigue, general 'yuck' feeling, on this Gemzar- for the first few days. It's interesting, b/c when I was on Taxol, it took quite a few months before I felt these effects.
Oh & I have this dreadful rash - above my collarbone, around my neck from ear to ear, on my hipbones, across my belly & bikini line & along the incision/scar from my liver resection. It's gross & unattractive, but manageable.
However, I do already feel a significant, palpable difference -SHRINKAGE!- in the nodes.
So, there you have it. All these side-effects are crappy, but tolerable, especially for the benefit we're already seeing. A couple of tylenol, rest, a warm blanket, fuzzy sox & a little rest goes a long way.
I also just started back on accupuncture & am confident that it will be as helpful to me this go-round as it was on my previous 81 treatments.

Wishing you the best.
Keep the Faith~
jessica

[Lida]

Jessica,
Thanks for your reply. Sounds like you have had some major challenges but did get some good results! I am glad it seems you are already responding to Gemzar. What type of dosing schedule are you on, 2 weeks on and 1 off? Does you onc think your "fluish symptoms" are common and will just continue? Do you have any platelet problems? I appreciate your thoughts. Lida

[jml]

Hi Lida~
My 1st cycle of this combo was Gemzar 2 weeks on/1 week off + weekly Herceptin. But that meant that I didn't have any true breaks from "The Chair" -as on my "off week" I'd still have to come in for the qweekly dose of Herceptin.
Having been on q3week Herceptin, solo ~2 years, I really value any free time from treatment I can get. So I kicked & screamed a little & now my onc has agreed to allow me to do the Q3week Herceptin dose w/ the 2week Gemzar dose, and the off week is truly OFF.
I figure if we're going to have to live with & endure this disease & all the unpleasant things that come with it, then our treatment has to be "liveable". A free week is like a gift!
Unfortunately I suspect the flu'ish symptoms will continue - as long as I'm on this combo. I'm actually a little nervous that they might be a little more severe the next cycle when we do the q3week dose of Herceptin w/the Gemzar, but I guess it comes with the territory.
My cbc's took a really big hit after my 1st dose of Gemzar. So much so that the Rn had to get approval from my onc to treat me the 2nd week. I felt pretty crummy for the 4 days post treatment (both weeks) & was told to be very cautious in public, around anyone who might appear to be sick, b/c my WBC's & platelets were very low.
Yesterday, I started back on accupuncture & already feel much better than I have in the past 10 days. It helped me tremendously during my previous times on chemo & know it will/is again.
Thus far, only my cbc's have been affected, no neuropathy, but I do have that dreadful rash. Also, I have discoloration on the sides of my tongue- as my L.Ac/TCM says is indication that my liver needs support as it tries to cleanse the body of the toxicities of chemo & dead (yeah!) cancer cells.
Will your next combo include Herceptin? Any thoughts on Tykerb?
Just remember, your body is infinitely strong & wise. Especially the liver - inspite of the disease load I had in the past, my 27.29 was ~75 at its highest, even though my onc said she would have thought it would be in the 100's. And my liver enzymes/function was always completely normal.
The liver is amazing & resilient!
As are WE!
Please let me know if there's anything else I can do to offer you wisdom or comfort - anything at all~
Hang in there, Keep the Faith!

jessica

[Lida]

Jessica,
Thanks for your reply. In response to your questions, I have been on Herceptin for over 7 years and will continue. My onc has said Tykerb will be left in the "back pocket" because they only know of its effectiveness with Xeloda. As time goes on, there will be studies showing Tykerb with other meds; then it may be a good option for me. What other chemos besides Gemzar have you had? I have had the Taxanes and Xeloda. Soon, my onc wants me to start Navelbine with Herceptin. She saw a good response rate in a study with Herceptin and Navelbine. ( But Gemzar is a good option too, she said.) Hope to hear from you. Lida