Navigating Navelbine
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Hello Ladies: Hope all are doing well, I am in my second month of Navelbine, the usual, the gas, the gas, but this too shall pass...ha,,,,no pun intended. Good ol' Maalox.....have a great day!!!
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Navelbine is still working for me! I've been on it since November. I had a slight increase in my CA27.29, but we did xrays and my lesions are healing! Yay!
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Chele: Awesome news!! Yay!
I hope I get treatment tomorrow - will see what my blood counts look like. This week with the reduced dose was much easier to tolerate than the full dose.
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Chele: Glad to hear the good news....may you be all healed up soon!!! Prayers for you....
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Two doses held in a row due to neutropenia
Am also on oral cyclophosphamide. Anyone else on that combo? I wonder which is the culprit?0 -
Learnin: I'm not on that combo, but I know that with Navelbine alone my white counts got very low.
I was able to get chemo last Friday. My white counts were fine; my platelets were borderline (100 is min to get chemo, and mine were 102). My red counts are continuing to drop - slowly, but a definite slow decline each and every week. I assume that's why I'm so tired all the time?
I know things could be much worse so I try not to complain much, but I'm really tired of being tired. I am not adjusting to this "new normal" very well this time at all.
Do you all get ALL of your anti-nausea meds before they do the push, or do they do some before and some after?
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Thanks Lynn and Sissy!
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How is everyone's acid reflux or appetite on navelbine. Mine have been terrible.
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Tiger: I don't have any reflux. I take a Priolsec every day - are you taking anything? My appetite comes and goes. Sometimes, I'm ok and other times I could easily skip a meal or just eat a tiny bit. So far, I've been able to force myself to eat anyway because even though I'd like to lose a few pounds, I don't need to lose a lot and I can see where I could easily lose a lot this way. There was a thread recently on appetite, but I can't remember the name of it now...sorry!
I did get chemo today even though my platelets were low. He said my white count was good. I'm annoyed with myself that I forgot to get a copy of the report like I usually do so I'd know the exact numbers myself.
Since they were low, he reduced the dose again - 1/2 of what I got last time, so I only got 20mg this time. The nurse said that was hardly anything -- she said it was about like 1/2 of a teaspoon! Amazing to me that such a small amount can wreck such havoc on you!!
How is everyone else doing???
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Hi Lynn- since you asked....
After two weeks off Navelbine, my neutrophils were finally OK to get another dose. I think 36 mg. I know it is based on body surface area. So Lynn, our doses may not be directly comparable.
Cyclophosphamide has been stopped.
Occasional nausea - but still gaining weight! (which I don't need). Fatigue is annoying - not sure how much is due to treatment and how much is due to meds.
Otherwise - doing well. Getting my kitchen painted
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Learnin: That's great that you were able to get treatment again. Yes, I looked up how they calculate that so everyone is different. I still can't get over that of all the stuff they put in me today, only 1/2 teaspoon was actual chemo! That is some potent stuff!!
Sorry about the nausea - you have meds for that ,right? I hear ya on the fatigue - it sucks!!
That's great about the kitchen!! We want to totally re-do ours!
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Off to Hawaii with my gastro problems.
Lynn: I started Prilosec yesterday.0 -
Tiger: Hope you are enjoying Hawaii right now!!!
I still feel like poo!! I had the smallest dose since I started this, and I think I feel the worse that I have. It is really starting to affect my mood.
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Hi Lynn - sorry you feel so crappy. When do you next get scanned to see if it is at least achieving its mission, one teaspoon at a time?
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Hi Learnin! Next scans are in early October. I have 5 more treatments before then. I keep reminding myself.....5 more, 5 more, you can do it, 5 more, but days like today I'm not beleiving my mantra. :-\
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Lynn have you suggested every other week instead of 3 on 1 off. I sure helped me! Hawaii is gorgeous
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When I was doing navelbine I had a hard time with being sick, low counts even got hospitalized with neutropenia & cellulitis. A stupid pulled cuticle got so infected my armed developed cellulitis, I had some serious low white counts when they put me in the hospital for that one. After being in the hospital my onc gave me a 3 week break and then we went to 2 weeks on 1 off and it was a little easier. I elected to take a chemo break and try affinitor because I really hated navelbine with a passion!
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Tiger: Right now, I'm still on the 12-week plan....I have treatment every week, no breaks. If the scans show it is working, then we'll switch to every other week. That's what I keep reminding myself of -- hopefully that schedule will be easier to tolerate. I bet Hawaii is just gorgeous! Have a great time!
LuAnn: Wow, sorry to hear that you were hospitalized while on Navelbine. My onc is so hyped up about Afinitor! I swear that a tiny part of him hopes the Navelbine fails because he seems to be just chomping at the bit for me to try that. How are you doing on it??
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I just came back from my 4th scan since I started Navelbine twelve months ago. since my last scan,lesions in the spleen are gone, lungs and axilla are stable. So since I have been on Navelbine, the lesions in the spleen, mediastinal and hilar nodes have disappeared.
I hope to stay on Navelbine for a very long time!
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Even though navelbine and I did not agree it did an awesome job on clearing up my progression. We went with affinitor because I had such a good response to AI's before that we are hoping for many years of good response with this. I am doing good on affintior, no major problems only issue right now is blood counts and anemia but I am sure that will improve.
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Lotusblossom: I'm so glad you've had such great results - that is the news I want to hear!! I hope you continue to get great results for many years to come!
LuAnn: Thanks for sharing your experience with Affinitor. Obviously, I really hope the Navelbine works, but it's somewhat comforting to already know what the next plan will be and how others are doing on it. It scared the sh*t of me when I first read about the se's, but I've been reading the Affinitor thread and see that many do very well on it. I hope you can stay on for many years too!
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Is anyone having any pain mostly below the waist? Meaning hips, pelvis, legs, but not so much uppper body. I have been in such pain recently and they said at the onc's office that they had another lady on Navelbine said she was having this problem too. They are being vague right now since I have scans pending, and I'm sure they are waiting on those before they determine this is a se of the Navelbine, but was just wondering if this was common....
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Hello ladies,
I'll be joining you here on the Navelbine thread - hopfully for a long time. Got my first infusion yesterday and aside from feeling a little weird and some gas, feeling pretty good. I'll also be on Xeloda but won't be starting that for a week or so. Thanks for all your comments and tips on this thread. They were really helpful to read.
Best,
Annie
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OK, I am starting Navelbine on Friday (19 October) I am waiting to have a port put in and then will be on Navelbine and Herceptin. Honestly it is a relief to be back on Chemo. I hope this works to kill the cancer cells in my liver and any other little booger's that are around. Hope I have little side effects.
How did any of you handle the constipation aspect of this medication.
Susie
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I'm another one joining this group in about 3 weeks. I have to do chemobolization on liver next week and then 2 weeks later it's on to navelbine.
As to constipation from chemo, prunes almost always work for me, if not I'll take senecot and that will help.
Good luck everybody!
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I handle the constipation bu taking my meds/vitamins twice a day with prune juice. Sometimes snack on prunes, and if all else fails I take a stool softner. I found eating a cup of Honey Nut Cheerios (I like them dry, as a munchie snack) improves the performance of the prune juice.
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I started Navelbine yesterday. Counts were low but doc started me anyhow. I have a feeling Neulasta and I are going to be seeing alot of each other!
First treatment went fine, some heartburn that Zantac took care of right away.
Hope everyone is doing well!
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Runnr - I had my second tx today. I used Zantac, too, and it has helped. I hope all goes well for you.
Cynthia
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I had infusion #5 today. I had a toothache last week so yesterday went to the dentist, had them do X-rays and everything, they found nothing. Today my jaw hurts so bad I can hardly stand it. The whole left side of my face feels broken. I read that 5% of navelbine users get jaw pain... Guess I'm one of them. Anyone else have this? Ideas for relief? I just got desperate enough to take oxycodone, but I can't keep taking narcotics they make me so loopy!
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I have been on Navelbine for 15months now and yesterday my Ct scan came back as stable.
This has been a great drug for me. At first, I really had a hard time with the constipation and would have to drink a ton of prune juice. With time, that problem has faded away. Also,the slight neuropathy and eczema have also disappeared.
So, all in all, Navelbine is a very easy drug. Let's hope we all get a long run out of it!0
