Navigating Navelbine
Comments
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Holy Smokes Sue! I'm sorry I just logged on for the 1st time in a few days. I really haven't had that reaction before, in fact, the only feeling I really get is some fatigue & maybe a day of a little indigestion, although that's very infrequent. Did they give you tylenol & zofran beforehand? They give me that every time...and maybe that's why...I know the zofran is for the tummy, maybe the tylenol is for the bone ache. What you're describing is what I feel when I get neulasta...and that's really very mild because I take clariting before and the day after. I'm so sorry you had that reaction! I get 2 tylenol and my guess is that they're 500, but can't say for sure. I am the same as you on pain pills...I just tough it out. I figure it's important to know what my body's telling me so I can remedy what I'm doing....but you shouldn't be in that severe pain. Keep your body less inflamed! Maybe try ibuprophen...that's all I take if I have an ache or pain and it does the trick.
My good news...and hopeful for you just starting Sue...my tumors (I thought there were only 2 but....more than that!) have shrunk by about 80%. The onc is very happy....I said I wanted them gone! She said txt is working and is changing my navelbine to 2 wks on, 1 wk off...yippee!!! Herceptin & perjeta still the same but that's just fine!!! Kinda walking around with a lighter weight on my shoulders. I used to be the glass half full all the time & dx #3 took a bit of that away, which surprises all around me, and even myself. Going to try to live a little lighter!!! Love to all...Gail....you're on my mind, with the rest of our gals...Nancy, Cynthia, Robin.....XOXO
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Sue - I had that reaction to navelbine the first few times I got it. I would end up spending a few days in bed just crying from the pain to my legs and ribs. It got better with each tx, and I also realized that being constipated made it much worse. If I remember right, I think it was muscle pain but I'm having a hard time remembering for sure. I hope you feel better soon!
RonnieKay - glad you're getting good results with the navelbine. It's always a good sign when our oncs are happy with our results.
Gail - sorry you're no longer on the Navelbine, but I'm glad you're still hanging out with us. I hope you're doing okay.
I had another rbc transfusion on Tuesday, then followed it by chemo. I had my cbc done on the prior Thur. and they didn't get the results until Monday. I called them first thing Mon. to tell them I felt horrid all weekend and they were already getting things rolling for a transfusion. My hgb had dropped to 7.7, but was probably lower by Monday. The transfusion helped me feel better quickly which is unusual, but very welcome. My hgb came up to 11.8 which is the highest it's been in what seems like forever. We went to Camp Challenge for the weekend and I was so thrilled I no longer felt so awful and could enjoy it.
This morning I woke up with a nose bleed that would not quit. True to my nature, I didn't think much of it because it wasn't a gusher or anything. My insurance nurse called me for her routine check and I mentioned the nose bleed and how it had been 4 hours by then. She told me it could be low platelets...oh, ya, those things which I rarely think of. I checked my arms and legs for bruising and sure enough, I have some "pretty" purple bruises and more keep showing up. How strange is that? She told me to call my onc so I did and my platelets are low (of course), but not dangerously so (35,000), so I get a stat cbc in the morning before I head to chemo. I would really rather not have to go back to the hospital for a platelet transfusion this time, but I would rather be safe than sorry. Navelbine sure is determined kick my butt!
Wishing everyone well!!!
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Cynthia sounds like you've had quite a time of it lately. Hope you managed to avoid the platelet transfusion and got your chemo ok.
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Thanks Gail! I got a reduced dose of chemo and my platelets are still continuing to rise on their own. I've since learned that transfused platelets only last about 2 to 3 days so they aren't very useful. On the other hand, any level above say 20,000 isn't too worrisome. It would take a nasty accident for me to have internal bleeding. So, that's good to know.
I saw my onc yesterday and my CEA is going back up, so no more Navelbine and Xeloda for me. I'm getting a chemo break so my counts can recover. After my counts are normal again, I will get an injection of a radioactive isotope (samarium 153) that is supposed to seek out and destroy my bone lesions. I'll have scans before and after to see if it works. I figure it's worth a try.
I hope you're doing well Gail and I'm thinking of all of you often. I'll continue to check in now and again. It feels weird to no longer have a "chemo home".
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Cynthia...We'll be hoping the search & destroy isotope does its job without the collateral damage xeloda & navelbine have done. It makes me crazy that you've been going through all that and your cea is rising...I just don't get it. I hate cancer
My onc says not to put too much emphasis on the numbers, but how can we not???? Good thing you'll be getting scans.Gail...wondering how treatment is going now....and if you're happy in your new flat.
Sue...hope treatment has been kinder to you. My onc was changing my regimen to 2 weeks on/1 week off with navelbine (same schedule w/herceptin & perjeta), but she didn't get a chance, as my low white counts changed it for her. I've been a nervous nelly, thinking I'd had almost 3 months of weekly navelbine and shrinkage was good....now my counts are down. UGH...there's always that what if that lingers in the back of my mind. I wish it would just go away!!!! Anyhoo, I feel a whole lot better with a week off. Just hope it's still doing the job!!!!
Don't know if you gals have seen on other sites, but our Nancy is facing another surgery challenge. Sending love & prayers...all day, every day...for all of us!
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RonnieKay thanks for letting me know about Nancy. I hadn't picked up on her posts.
Cynthia I hope the radioactive isotope works. I hadn't heard of this one before.
We managed the house move with a bit of help from my chemo unit. They screwed up the patient transport for my chemo the day before we moved. So I ended up having chemo and moving house same day. They picked me up from the old flat saving me figuring out how to get down 3 flights of stairs. Then they dropped me off at the new flat. I'm now only 1 flight up so am hoping to be able to manage to walk down them again when more settled. I'm currently back in hospital as have built up more fluid on lungs again. Getting an ultrasound tomorrow to work out where to drain from.0 -
Oh Dear Gail...I'm sending you my thoughts and strength! Worried about that fluid...hope they find the way to get rid of it & you feel better soon!
Thinking of all!!!
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first treatment navelbine went well. Five days past and i have not had a bowel movement. Took stool softeners...did not work. Took 4 senna leaf powder lax...nothing. My jaw hurts. My stomach feels queezy..i need to clean out. Dr just sent in a script...what a mess. Second treatment in 2 days. Also taking herceptin and perjta. Reoccurant breast cancer after mastectomy. Nodules seen in lungs. Raised rash on chest surgery scar.
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Junco,
For different reasons, I'm having the same struggle with constipation. I can't stand Miralax (I swear I can taste it), so MO recommended magnesium. I tried the milk of magnesia, but it honestly tastes like a dog's nether regions, so have switched to the tablets.
It's been two days on the tablets (6 days with a shut down fundament), and things are perking up down there. Ask your MO if they are a good idea for you. I'm keeping up with the senna and the stool softener too, and hope I don't regret the decision, if you know what I mean.
Like you, constipation makes me nauseous, and the problem is that the anti-nausea pills contribute to constipation. I've been prescribed Ativan for the queasiness, and it is not a bowel blocker
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Navelbine gals. When I was dx stage 4, extensive mets to liver, onc put me on navelbine, perjeta & herceptin. Stayed there for 22 months. I remember her saying most have serious D, but I clammed up too. I'd gotten a hernia & diastasis from died flap 6 months earlier & hernia specialist said NOT to get constipated. After trying all the meds & not getting relief, she said to eat organic prunes...for me, it worked. Navelbine was my magic drug...I so hope it is for you
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hi, I’m starting Navelbine after Xeloda has failed. I was told it will be weekly infusion. I am still working full time ( for insurance and my husband lost his job) so I m afraid how I am going to keep working. I was fine working through Taxol/Herceptin/perjeta which I got before but it was every three weeks. Please tell me I can do this one!
Thanks,
Minnie0 -
bump
Please can anyone tell me if a port is required on navelbine? Thanks.
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Well, I am not a candidate for navelbine or any chemo. Still allergic to prednisone / Benadryl and as long as I am then there is virtually no chemo options says the current oncologist that I just left standing in my dust.
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Why is an allergy to Prednisone and Benadryl for an automaticatic dismissal for IV chemos? There are many that don't require these as pre-meds. I am currently on Navelbine and am not receiving these and have not had any significant issues. I also did not get them with Gemzar or Carbo and found that combo extremely tolerable.
I suggest you try and get a second opinion from a different oncologist.
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He said the steroids are the bag of tricks for any allergic reaction and cannot get the chemo w/o a bag of tricks to keep me from dying from the allergic attack. sigh
Yes, he is fired. Not for that reason, he is fired bcz he did not listen. 3 appts and still did not know I had the allergy to these. 3 discussions about it and still did not know. Unforgivable.
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Dear Navelbine Folk,
I'm starting this treatment next week. Thought I'd give a shout out to any one currently doing this drug. I have no idea what my schedule will be, but I thought it might be best to get it early in the week, so that if I have any funny business with it, I won't be dealing with our local ER on the week-end.
How many of us are there now?
Jennifer
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Jennifer, I mentioned this before somewhere else. Europe has approved an oral form of Navelbine. I know pills are generally more expensive through insurance but it might have been approved in the States too. I can only find information as old as 2007. Something might have changed in the meantime.
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Hi Jennifer,
I started on Navelbine in April, the oral form, capsules, weekly administration. The most significant SE has been GI issues. The first 5 weeks, the GI issues lasted about 18 h and then I was ok the rest of the time. I then had to disrupt treatment for 4-5 weeks, due to orthopedic surgery (left femur/hip). I restarted Navelbine three weeks ago, this time I have had more nausea, so MO has prescribed additional antiemetic medication and the nurse provided acupuncture. I hope this works as I want to be able to get through the next 5 weeks of treatment folllowed by a scan. A dose reduction may also be needed, if the nausea continues.
I am also on Herceptin + Perjeta every 3 weeks and Denosumab every 4 weeks.
I would also love to hear about others experience with this treatment.
X Meja0 -
I have had my 3rd round(s) of Navelbine. The pill form is not available in the states, just Europe. My schedule, weeks in a row and a week off is PIA. Constipation has been an issue, but managing to deal with senna. Day I have treatment, I just crasha nd burn when I get home, 2nd day a bit better. My appetite has tanked the two weeks I am getting treatment, but I could stand to lose some weitght. (LOL)
It is not awful, but other treatments have been much easier for me ie: tykerb, xeloda Bothe with herceptin
Now following this thread!
Nel
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Thank you for this information. I'm going to have to watch it on the constipation, as I am prone to it.
I always ask for a slow drip on everything, as I'm a delicate flower. How long should the infusion take? What do you guys think about skipping the steroids? I'm prone to nausea, but the steroids mess me up emotionally.
It will be my 6th chemo, so all digits crossed that it does some good. I'm still looking for immunotherapy trials, but I can't stay off treatment while that process takes its own sweet time.
I have learned that trials move slowly. The last one I tried to enroll in took almost two weeks to get the result of an HLA blood type test. Two weeks of being without treatment. And the kicker is, once I'd gotten through that barrier, it would have taken up to 8 more weeks to get a tissue typing done looking for a specific protein. Frankly, I was relieved when I was excluded from the trial. Mind you, I would have loved to enter. It's the kind of trial that's giving folk real remissions (T-cell jiggery pokery), but from start to t-cell insertion would have been 9 weeks. I'm grade three, and maybe I don't have the emotional stamina for that. I was certain that I was staring down a CNS barrel of badness.
So, for the next go round of trial hunting, I'm going to have all sorts of serology ready to go, Foundation One reports lined up and ready, etc. Then, I'll start a washout when the trial includes me.
Navelbind, here I come.
Jennifer
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Is the pill form in America?Waas on Xeloda but it quit working.
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I have just started oral Navelbine. I had my second weekly dose yesterday. So far constipation has been my only side effect. I am hoping to have a long run on this chemo.
Tracey
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We don't have access to the oral form in the States yet*. I know it is tons more convenient, but there are some aspects of an infusion that I like. IV therapy is easier on the GI system, and dosing is easier to control as each person's GI tract absorbs the drug in slightly different fashions.
I'm probably convincing myself that I prefer IV therapy because it's all I can get. Next on my list of wacky delusions: Brad Pitt prefers older ladies!
* I think. I mean, no one even offered it as an option.
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Hi Jennifer,
I too am on the IV drip form of Navelbine (but I just like to call it Navy Bean. It is easier to pronounce and for some reason makes me smile). I have been on my magic bean since February and per last week's CT scan, it has kept my breast stable, which is amazing since I haven't been receiving it very regularly. So let me explain, my mets have all been confirmed via biopsy to be 100% triple positive and then a year after my de novo MBC diagnosis in May 2014, I was diagnosed with a SECOND primary breast cancer (from the same rouge breast). The second cancer was confirmed to be undeniably triple negative. So far, the triple negative has stayed localized to my breast. So I am on herceptin for the triple positive, and Navy Bean to keep BOTH cancers in check. I had to stop and start it for long periods of time due to progressing triple positive brain mets. I had a double craniotomy in mid April, which paused the Bean for about a month, and then had a 12 session course of low dose targeted brain radiation, which also paused the bean for another month.
As far as infusion schedule, I am on a 3 week schedule that goes like this:
Week 1: Meet with Oncologist, receive herceptin, receive Navy Bean
Week 2: Navy Bean infusion only
Week 3: off
Then repeat
Before each Navy Bean infusion, they give me a 15 minute drip of saline, and then the "Bean" infusion itself is only 10 minutes and a nurse sits with me the entire time as she pushes it.
I found it very tolerable from a side effect perspective and like you (as you could see from my profile), I too have been on a lot of chemos and this has been one of the more tolerable ones for me. I do get some mild fatigue in-between weeks 2 and 3, but nothing too bad. The other thing that my oncologist warned me about is that some mets patients say that they get some mild pain related to where the cancer in their body is located. For example, if you have a lot of lung mets, it may hurt when you take deep breathes, but that could be a question for your own MO too (but doesn't really impact me, since besides my breast and brain and this doesn't cross the blood brain barrier, I don't have any other active mets sites currently).
Hopefully this helps!!!
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What about hair ? I really want to try and look normal going though this
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I may not be the best one to answer this, but I can tell you, in the 2 month period from when I started navy bean in February, until I had to put it on pause, in mid April for my brain surgery, I did not experience any chemo related hair loss. I just restarted it again on Monday (two days ago) after 12 sessions of brain radiation, so I'm 100% confident that the hair loss that I'm experiencing right now (which started 2 weeks ago, while I was off chemo and in radiation) is a direct result of the brain radiation.
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Hi Jennifer, I started Navelbine/Herceptin/Perjeta last Friday. Navelbine in oral form/capsules weekly, and weekly bloodwork. I have been instructed to take prednisolone one hour before taking the capsule to avoid nausea, and it works - no nausea. Presently on "low dose" though - the dose will be increased in week 4 if tolerable. Till now only SE from the prednisolone.
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Becs -
How weird was it when you were diagnosed with the second primary? I can't even imagine.
I'm actually looking forward to chemo. The bone mets hurt, and the chemo will buy time while I arrange another trial tumbling run.
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I’m just greatful that my MO was smart enough to put it together that something was not “right”. I happened to be on TDM-1, a her2+ drug only at the time and my MO picked up that the rest of my body was responding well to it, but the mass in my breast was growing. So she ordered scans and we saw, that it was close to where the original tumor was, but not in the same spot, so we bioposed it and then, it made sense why it was growing on an Her2+ only drug. If I was on a standard chemo, it might not have ever been found! That’s how I knew I was in good hands, medically
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Navy Bean Gang,
I had my first infusion Monday. When do you guys get your "chemo crash"? I think I'm getting it today, third day, but if something bigger is brewing, I'd like to know.
I'm feeling it in my digestive system, that's for sure. I will be constantly vigilant again the dread constipation.
Jennifer
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