Navigating Navelbine
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HI JFL Wow you traveled all over Japan. And yes, me and my husband are planning trip to Japan next year, but we would avoid olympic time since everything will be really expensive. You might check into Air b and b options too! ANyway thank you for your tip, i will visit this board again soon.
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Hello, Im likely to start Navelbine next month, but my concern is that it can cause extravasation on the skin.
I have very small vein and the nurses always having hard time finding it, but I haven't had placed the port yet.
Do you recommend placing port before starting this treatment? Thanks!0 -
Yes, I would recommend a port. I did Abraxane, Doxil and Halaven without a port, as I have many good, prominent veins all over my forearms, but my MO said no with Navelbine due to extravasation.
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HI JFL Thank you so much for your reply. I hate the idea of placing port, because i'm worried about it might limit my physical activities, but
sounds like I def should consider getting one for this med.0 -
I'll try to get some ashwaganda. I am afraid the dizziness is caused by bone mets pressing on the brain so I am on dexamethazone after the ER visit on Wed. Now I am waiting for the docs next plan.
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Hi there. Just left the MO office with my mom. She will be stopping the Xeloda and starting Navelbine 2 weeks on, 1 week off. Her MO seems to think that it has the fewest amount of side effects, which will allow for some semblance of a decently quality of life. I hope we get more people to chat on this thread... wondering if it hasn’t anything to do with this thread being on the 3rd page??
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This is so great to hear! I’m having my first scan on Navelbine next week and I’m hoping for shrinkage or NED. I have this one lymph node that seems softer but a little bit bigger. I keep staying hopeful and praying.
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Hi All, I'm letting you know that i just finished the first cycle of Navelbine, and my CA 15 dropped. It was not dramatic decline like when i was on Xeloda, (Xeloda dropped my super high CA 15 which was over 9000 to 5000 in couple cycles!) but still feel little bit relieved. My AST, and ALP also dropped.
Managed to control nausea with chinese herbs, and fatigue is not too bad, but only problem is that my blood count gets really low.
I had to go back to the hospital to get neulasta shots 3 times a week and have to go back to get more shot this week.
Anyone having the same problem? I started taking Ashwagandha as JFL suggested, and it looks like it is helping giving more energy.
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Peanuts, great news your tumor markers and AST/ALT are decreasing! Some of my blood counts are low but none currently causing any major symptoms or issues. I had trouble with hemoglobin/anemia in the beginning but that has improved slowly but surely. I do take various supplements which may be aiding in maintaining some of my blood counts. I don't know exactly what is helping with what. After starting Navelbine I started turkey tail, maitake extract, non-heme, low-dose vegetable iron and the ashwagandha. I have mentioned previously that the ashwagandha (and iron) has helped with hemoglobin. Turkey tail and maitake boost the immune system. Not sure if they are helping to maintain some of my other blood counts at decent levels.
I don't know how much longer I will be on Navelbine. I have a PET scan this weekend. My tumor markers and AST/ALT have been on a slow increase. I thought it might have been caused from receiving a few vaccines and being sick as all of those markers jump up when I am sick. However, I am no longer sick and they are not really going down. Feeling at a loss and don't know what is next. Not really a lot of obvious treatment choices for me left. Navelbine has been very tolerable for 7 months and I will be disappointed if I need to go off it.
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JFL, Thank you very much for supplement info. My acupuncturist also recommend turkey tail mushroom. Interestingly, my MO has been using the unique trick- he always makes me do jumping jack for about couple minutes before the blood test, cause he thinks this helps boosting up blood count.
The trick has been working when i was on Ribciclib(CDK inhibitor) but not last couple weeks. I'm seriously considering getting a mini trumpoline so i can bounce up and down at home!
I am very sorry to hear that your AST/ALT has been slowly increasing. I heard the combination herbal supplement can also cause AST/ALP increase, which i hope is the case. I really hope you can stay with the current regimen. Even if not, there are always clinical trials going onI .
I will be thinking of you this weekend. Sending vertual hug from California!
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hi there! My mom just had her first Navelbine infusion on Thursday and she was fine that day and Friday but has been feeling quite nauseous and light-headed yesterday and today. Are these side effects normal? Any ideas on how to mitigate? Open to complimentary médecine too! Thanks all:)
Chloe
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I am starting Navelbine tomorrow and would love some words of advice 😊 How did you tolerate it
Really had to jump through hoops to get my Granisetron oral pre med through Medicare and supplement!...and now they say I can’t pick it up until day of chemo???
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Get a port.
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I have a port thank goodness with my uncooperative little veins!
Wow...when they state constipation is a side effect they aren’t joking! Taking Senokot S and Miralax without much action
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I am getting Navelbine. Beginning my 7th cycle Aug 12. Day 1 and day 8 every three weeks. I am very concerned about my ANC, my NP refused to give me Nuelesta. I guess now I will have a blood test 10 days post chemo, and when it is below 1 they will order a neupogen injection 72 hours before my next chemo. That will cost me 3 hotel stays to be there for 3 days. It is a 7 hour drive for me. Why didn’t she just give me a Nuelesta….following the decline for the past 6 cycles they can see it is dropping, I assume the trend will continue. Oh well. Any miraculous increases in the absolute neutrophils after steady declines
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Hi all,
This is a very long story. I apologize. If you want to skip to the last paragraph I would appreciate anyone that can at least read that part. That is my question to the community.
I got my blood test. It wasn't good. Absolute Neutrophil is .80. I am at my cancer center early enough to get a nuepogen injection 72 hours before my chemo on Friday, however apparently that is no longer the plan.
I was told very angrily by my oncologist he will not ever give me a nuepogen injection. If my ANC is low he will lower my chemo dose.
I am terrified. Why not give me a drug that will allow me to keep my chemo on time and at the strength that clinical trials have shown worked. I have taken Nuelesta in the past with zero issues with other chemo. I just don't get it.
I think my oncologist is on a power trip. I believe my chemo on Friday will be canceled.
My cancer markers are rather stable but higher than normal. I believe the chemo is keeping my cancer from growing. Without the chemo, it will grow. I will have a ct scan on Friday as well. I was NED prior to now. I am hoping to stay that way. But without his support that won't happen.
As you can imagine, I did not have a friendly interaction with my oncologist. He refers to my travel to the cancer center 3 days early, as passive aggressive behavior he called it abusive and said he won't stand for it.
I was told to do this by the care team, if my ANC was below 1 and that i needed the nupogen 72 hours. I was told I need the injection by 10:30am Tuesday morning. It is a 7 hour drive.
I called the center early Monday morning, trying to get labs ordered and this appointment Scheduled. I explained I needed to leave by Monday night or I would not be there in time to get the medication and labs before 10:30 am Tuesday. I needed to know.
I assumed the plan was what I was told the week before, however I did have to wait for my oncologist to review the labs and put in the orders. I had my labs done locally on Sunday (10 days after my last chemo ) as I was instructed.Results were faxed to the cancer center on Sunday afternoon; my care management team sent the lab results with a message asking him to put in orders at 8:00am Monday morning, The care team sent several messages to my oncologist, none were answered on Monday. He was in the clinic on Monday all day. I called the scheduler and let her know, when my Dr put in the order, to just schedule me. I will be there Monday night. I had to leave by 4pm Monday and still no one had heard anything by Monday afternoon. I would be at the cancer center late Monday night. Letting the scheduler know whatever schedule works for them Tuesday morning, I can do. My oncologist never answered any of their messages nor did he put in any orders. I went to the clinic about 8:30 am and let the receptionist and the scheduler know I was there and waiting. I left and came back again about 10am letting them know again I was there. Still no word from the doctor and he was there in the clinic, I was in the lobby waiting room. As you can imagine I was stressing out the closer it got to 10:30 am
He called me about 11:30am Tuesday morning , a full hour too late and he was irrate. He said I was abusive and he wouldn't stand for it. If I continue this behavior (What? Coming to the cancer center, that my care managers told me to do?) this was abusive?? He said he will fire me as a patient. I am abusive to his other patients because he has to spend his valuable time calling me on the phone and they need his attention, they deserve it Apparently, I don’t count now that I am stage 4. I think the patient advocate got his attention and he was forced to deal with the situation and call me. Probably why he was so angry. He was shouting and angry and then just hung up on me. Everyone in the waiting room at his office heard everything. It was a full room. I had him on speaker phone. I never said much, he didn’t let me.He has my very life in his hands. I sent him an email Monday morning begging him for my life. He never answered it.
Last week, I sent him an email message inquiring about the plan if my ANC was low on Sunday. He pretty much ignored what I said and began talking about Neulesta and that if it was warranted, they have a system in place and if i needed it, I would get it. I need to trust the plan the nurse practitioner and that the care team has set up for me. Apparently, I am not privy to hear what that is.
There is no plan except to show up at the regular time and have my chemo canceled because the ANC level is below 1. I originally questioned the plan at my last chemo when my concerns surfaced regarding my ANC levels dropping. At first he’d answer was we will watch it. J had been watching it and wrote diwn how much my ANC dropped after each cycle was completed showing her it will be too low next time but shdd Edcstill declined to order the neulesta when I questioned her what the plan was if it was too low, then she agreed for me to get local labs drawn and she would order nuepogen at a special pharmacy if needed they did not believe it would be low. I knew it would be. Each week it goes down between cycles. I have no script coverage.I can’t pay for it and how could I get it the day after it got ordered? Is that even possible? Special pharmacy in my area are mail order. But the plan was to order it. She is on vacation this week and not available. I wanted them to order it and give it to me at the cancer center, then it is not a script. That didn’t happen. Oncologist refused.Has anyone been given nuepogen or nuelesta when they were on Navelbine to keep their chemo on time and at the proper strength? I am so worried. Please reply if you have any info regarding low neutrophils and navelbine. Am I out of line to expect my Dr to help me to get my treatment on time? I called the patient advocate, they could not believe this. They were going to have their management team contact the management team at my cancer center. I haven’t heard anything but I am looking elsewhere for my treatment. This bridge is burned.
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