If you have ever had Navelbine, pls reply.

Chelee · 01-19-2010, 10:50 PM

Regardless if you have done Navelbine in the past or present, did you do wkly or every two wks? Thanks!

Chelee

Rich66 · 01-19-2010, 11:36 PM

I think tehre are protocols for weekly or every 3 weeks. My mom was originally to have it weekly. Wbc drop led to every 2 weeks, then every 2-3 weeks. Onc didn't want to use neupogen. Navelbine, not surprisngly, wasn't successful at 1/2-1/3 normal dose. Why do you ask? Weren't you getting it weekly with Neupogen?

Chelee · 01-20-2010, 04:27 AM

Rich, The standard protocol I find says Navelbine wkly. My onc & I agreed on wkly. She herself told me it was better wkly, & that it had a good synergy with herceptin this way.

So I had Navelbine/Herceptin wkly for a month & my counts did tank immediately after each infusion. But my onc just kept reducing my wkly dose for that first month "instead" of giving me Neupogen?

Then one day she tells me she will be gone for a month & will be back beginning of Feb. With no warning that day she tells me she is changing my infusion from wkly to a 2 wk dose of Navelbine. Then 3 days of Neupogen after each infusion. Personally I did not like this change when she had told me originally wkly was better. Plus in hindsight I don't like the way she reduced my dose of Navelbine wkly instead of giving me Neupogen. (I should have been getting the full dose of my "wkly" Navelbine & the Neupogen injections from the get go!)

I believe it was all about keeping cost down. Neupogen injections are expensive. Each vial my pharmacy told me cost $1300. I would have been getting 3 per wk so my onc saved $15,600 in just that 1st month of doing wkly with NO Neupogen! Now that she is gone for a month, & switched me to every 2 wks she knew she wouldn't be there to "reduce" my dose each wk depending on my labs...so she "had" to order Neupogen for me while she's gone. So doing it every 2 wks she saves money. This way instead of $15,600 it only cost $7,800. Seems she is more concerned about cost then killing my cancer? I've searched on "several" bc boards & so far it seems like the most are getting wkly Navelbine. I think I found 2 that were getting it every 2 wks....I would love to ask them what kind of insurance they have? I know with an HMO it's all about Profit over patients". So I'm doing my own mini poll here...I bet most are currently doing/or did wkly as the protocol calls for. (Rich...are you sorry you asked now.) lol

Chelee

Pam P · 01-20-2010, 05:24 AM

Chelee - I am back on navelbine. I was on it a few years ago too. I get navelbine weekly for 3 weeks, then a week off. So 3 weeks on one week off per cycle. I do need to take the neupogen shots too. My doc. prescribed 3 shots after each tx but I've generally been giving myself only 2 shots and have been getting away with that with my wbc staying okay.

I see the doc today & have chemo. I'll ask what my dose is... I know it's based on weight etc. so there are variables & may not be the same weekly dose for each person. I'll also ask if he ever prescribes navelbine every 2 weeks & if so why and does the dosage equal what would be received weekly or is it reduced.

Maybe you get a larger dose every 2 weeks than you would have weekly but you get 2 weeks for your counts to recover between. Could be some advantage in that.

Missyw · 01-20-2010, 06:55 AM

Hi,

My Navelbine scedule was two weeks on one week off. The side effects were very manageable; heavy duty stomach pains and heartburn were well controlled once I started Nexium, Pepcid and Carafate (sp?). I was warned about constipation, but I didn't experience that. My hair thinned a bit, but nothing drastic. I pray you have an easy time on it.

Missy

Sheila · 01-20-2010, 07:00 AM

Chelee
I was on Navelbine every 2 weeks with Herceptin also every 2 weeks. My counts were always perfect and that was my regimen for 5 months...it quit working, but that schedule kept me for 5 months. Hope this helps. As far as the counts go, I do think some peoples red and white cells are more sensitive than others, as my counts were perfect on Taxol for 2 years...made me wonder if i was getting the drugs!

Colleen007 · 01-20-2010, 09:58 AM

I have been on Navelbine 3 weeks on/1 week off for 2+ years now. I usually get an "80% dose" for each of those 3 weeks and get Neupogen for 3 days after each weekly treatment. If I am going away, I get 2 weeks of Navelbine at "100% dose" (followed by the Neupogen shots) and then 2 weeks off. Also note that I get Herceptin (roughly once every 3 weeks) and Zometa (once a quarter).

Hope this helps. Also note - I had a quarterly CT scan of the chest/abdomen/pelvis yesterday and this regimen is contiuing to keep things "stable" for me.

Julie2 · 01-20-2010, 05:49 PM

I was on weekly - 3 weeks on 1 week off for some time then 2 weeks on 1 week off.

Julie

Chelee · 01-20-2010, 09:16 PM

The protocol seems to be different for everyone here...interesting. I just googled Navelbine dosage again & the results all seem to be for wkly...and adult dosage 30 mg. I know my onc started me out at 30 mg wkly but decreased it each wk due to low counts.Now that I'm doing the Navelbine every 2 wks...my dosage is 40 mg. I hope that's enough to do it's job?

Rich, it sounds like your Mom's onc started out the same way mine did...then switched to every 2 wks due to low counts. Why didn't your Mother's onc want to use Neupogen? Was there a reason given?

Pam, Missy, & Shelia, thanks for all the feedback. I really appreciate it. Shelia your body is one tough cookie if your counts could tolerate both Navy beans & Taxol. Especially the Taxol. Unreal! What do you eat...you must be doing something right. lol

Missy I had no problems with my stomach on the wkly...but once I went to the 2 wk dose I have had to take protonix. About day 3 thur day 6 I have a slight nausea feeling and end up with heartburn if I'm not really careful about what I eat. Never happened on the wkly dose.

Colleen that is good news about your scans. You have gotten a long run out of Navelbine...that gives me hope. Thanks! Has the Navelbine caused any of you neuropathy? If so...how bad has it gotten? Seems I am experiencing it already in both hands. But just the ring & baby finger of each hand.

Chelee

Rich66 · 01-20-2010, 09:44 PM

She actually wound up doing 2 to 3 week intervals.
Despite using it a couple times when it was weekly, the onc felt growth factors in a less than 3 week regimen ran the risk of calling out stem cells from the marrow only to have them destroyed by the next round of chemo. Looking into it a bit, it seems it may be more an issue with the longer lasting neulasta. Ask your onc without mentioning this and see what they say.
Mom also had to start taking protonix after starting Navelbine. Had irritated vocal cords thought to be from reflux.

By the way..I'm usually more sorry when I don't ask. I tend to think life and death matters are perfectly aligned with the saying "There's never a stupid question"

StephN · 01-20-2010, 11:14 PM

Dear Chelee -
I also had Navelbine, but with Taxol as well as Herceptin - all three EVERY WEEK.

With that kind of drug combo it was a given that my counts would drop and I started the Neupogen shots the first week. My white count would drop some more and we would adjust the NEUPOGEN not the drug dosing.

By adjusting the Neupogen to more or bigger shots, the drug dose stays at an effective level.

BTW - each vial may cost what you said, but I think I got at least 3 shots out of each vial. Maybe more, it has been too long to recall exactly.

I think you need to also try to eat some iron rich foods for your red count as well as get Epo or Darbepo, the long lasting version.

Barbara H. · 01-21-2010, 02:23 PM

I had it two weeks on, and one week off.
Barbara H.

Rich66 · 01-21-2010, 04:04 PM

The iron issue/cancer seems to be evolving. Might want to tread carefully there:
http://her2support.org/vbulletin/sho...highlight=iron

http://her2support.org/vbulletin/sho...temisinin+iron

StephN · 01-21-2010, 04:28 PM

Rich -
My comments are directed to Chelee's complaint about having dosing lowered and her worry that the lower dose will not be effective for her. Especially since she is trying to go at the cancer without using heavy duty chemos. She needs to get the most out of the drugs she is on.

If her blood counts go down too low, as you know, she will be denied her treatment until they recover. If she can use diet to help keep the counts up, that would be the best way. However, she is already on Neupogen, in a struggle to stay on treatment course. There are ways to make adjustments, which was all I was pointing out.

Maybe she can try Leukine if her doctor is willing.

Chelee - I hope you were able to get treatment this week and that your leg is continuing to get better. hang in there like your little furry avatar is doing!

Rich66 · 01-21-2010, 05:40 PM

I thought she was having typical white blood cell count issues. If that's the case, iron supplementation probably wont keep the schedule on track, and it might actually feed the cancer. But yeah..if significant anemia occurs,probably better to go with a whole blood infusion or Leukine before an iron specific growth factor approach. At least that's how it looks to moi.

StephN · 01-21-2010, 07:40 PM

In my experience it is very rare for the red count to remain in normal range once the white count drops. In my case one followed the other. Since this the normal course, the labs before each infusion include both counts. They did not do that just for me.

Both red and white had to be within certain ranges for me to get treatment. If red count is dropping, something needs to address this.

I would be more worried about not getting adequate dosage of my drugs than iron possibly feeding my tumors. Especially if the red count is staying just above the limit as was my case.

Maybe someone else wants to chime in.

Rich66 · 01-21-2010, 08:28 PM

Could be an issue of treatment guidelines not tracking/addressing the fairly recent findings in those links. So..to get the treatment on schedule from a given onc, might be necessary to ignore them.

Jackie07 · 01-21-2010, 10:01 PM

I'll chime in - if I know what I'm doing (talking about

I didn't have Navelbine, but when I was undergoing chemo, I had both shots to boost white blood cell count and shots to boost red blood cell count. I remember the stuff made the back of my lower legs very heavy - like they were made of lead.

Everytime I had a blood draw, I seemed to be needing some types of shots. The shots worked quite well, but my heart function decreased too much and that's when I had to quit the weekly Herceptin after just 4 rounds.

Chelee · 01-21-2010, 11:03 PM

Steph is exactly right. I would of rather been on Neupogen right away then to have my onc lower my dose each wk. I want the most effective dose I can tolerate...& if that means Neupogen that's what she should of been doing from day one.

All my other counts are are ok. Low, but just barely under their norm so far. Platelets are still in normal range . So far the wbc is the only one giving me the biggest problem. But everything will change now that I'm getting the Neupogen. My wbc will be fine now, and it will all my other counts that drop which I'll have to deal with then. I'll find out Monday when I'm due for my next infusion. I hope to stay away from Procrit. I know I got an Iron infusion once my first go around with TCH.

Steph I pick up 3 vials of Neupogen a wk. One vial for each day. My chemo nurse gave me instructions on how to properly self inject. Each vial is one injection. It must of been different when you were getting neupogen. Larger vials of Neupogen probably.

Chelee