Navigating Navelbine
Comments
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Nancyh,
I just wanted to let you know that I actually started to have progression on Navelbine, but then went back to stable and regression. So you just never know. Also, even though my last week's scan shows regression, my CA 15-3 is borderline high. I read somewhere that tumour markers can be affected by all sorts of things that are not indicative of cancer (liver issues, the effects of chemo, cysts, etc.). To me, the fact that you are feeling great is a very good sign!!
Good luck with the scan.
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DG - I hear good things about Affinitor so hoping this combo works well for you. Avastin isn't approved here so probably wouldn't be able to get that. I'm not having any obvious SEs yet with Femara. Strangely I've actually been looking forward to hot flushes as a sign that it's kicking in, but should know by now that there's no real correlation between SEs and a drug's effectiveness.
Nancy - good to hear you're getting the chest pain under control there. Try not to worry too much about TMs, they don't always seem to be reliable. Good luck with the scans.
RonnieKay - the plan was to avoid stairs or get a flat with a lift, but have ended up compromising and going for 1 flight up. Hope you've had a reply to your email by now.
I had my follow up with the consultant after my pleurodesis. There is a bit of fluid built up again since the procedure but it might just be filling up the small amount of space still available and then stop or if it keeps building up may need to repeat it. He wants to do a CT scan after a month but onc already has one ordered so he can liaise with her on the results. Am a bit worried that I'm still struggling with the breathing, he couldn't rule out lung mets but did say no nodules were found in the pleura during the pleurodesis, so am hoping that's a good sign. He also said the lung could be inflamed from the talc and might need more time to settle down.
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Gail...glad you found a place! We're 1 flight up and I like that...seems safer & nice to have a few steps to get in that bit of exercise
Glad they didn't find anything to make them think lung mets and that their idea of the fluid filling up space is right-on. Just wish it'd be done so you could get the breath you need! I think I told you the only SE I had from femara was the muscle ache. It was mostly in my ankles...which is why they say lots of gals have the "femara shuffle." It went away pretty quickly. I'm glad you're handling it very well!!!Lotusblossom...I'm glad you commented on Nancy's tests. Exactly what I needed to hear as well. I know I'm panicking just a little too early but my tests seemed just a wee bit higher this month. My onc said that we may see that happen, but the last 3 months the readings have been dropping drastically, which made my onc think it'd be possible to have a chemo break in July, if scans were good and readings stayed where they are. I'm a little shook up...but I see her tomorrow so I'll know what her take is. I'm also on perjeta and herceptin. Love the word regression!!!!
Off to Grandson's 2nd to the last preschool day. Going to be his "guest" today. Hope someday to be his guest at high school graduation!!!!
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Lotus - thanks for the comment, I am hoping for stable and, frankly, even if there is mild progression, I might like to stick it out a while longer and hope for the best because I feel so great on Navelbine. I think Fitztwins commented on another thread, which I thought was spot on, that I wonder if we are too quick to change treatments sometimes.
CT scan today for me, chemo tomorrow and am hoping if the news is good, the nurse will tell me. Otherwise, I wait until next week to meet with my onc. Fingers and toes crossed.
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RonnieKay - I'd be happy with 1st floor if I can just get the breathing sorted out and know I'll be able to manage the stairs for some time to come. I agree I'd like to maintain some fitness level with it. Breathing actually seems to be worse again and feel as bad as before op now. They want to wait and see before doing another CT scan so will have to wait a couple of weeks, unless I develop a fever or start coughing up blood. The list of SEs for Femara include cough and shortness of breath, but I don't really think that's affecting it. Have been suffering some nausea and lack of appetite, but not sure how much of that is just stress. Will be glad when I have the scan done. Hope your onc appt went well and the readings were just a blip so you can get your chemo break. Hope you also make the high school graduation one day.
Nancy - fingers crossed on your CT scan. It would be good not to have to wait. I never get told CT scan results in advance but did get some info on a mammo and ultrasound on the 'good' side today. Breast is a bit swollen and skin mets appear to have taken up residence so onc wanted a deeper look. Radiographer said some abnormal glands under arm but doesn't think there's much sign of deeper disease in the breast, so some good news at least.
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Oh Gail...so much going on for you again. Hope you are feeling better today!
Hugs
Robin0 -
Hi Robin
My breathing got worse last week and eventually got admitted to hospital on Friday. Chest x-ray showed no significant increase in fluid on left side from previous x-ray the week before, but now have a small amount of fluid on right side and a shadow on the right lung. They suspect inflammataion of the lung (lymphangitis) and have me on steroids to help with the breathing. Also they think my skin mets are preventing the left lung from being fully efficient, so it's a combination of factors contributing to the breathlessness. Was initially reassured by the diagnosis as they didn't seem too concerned and thought the steroids would sort everything out. Having been naughty on google I'm more worried that this means I have lung mets (but in the lymphatic system rather than a nodule in the lung) and steroids will only help with the symptoms. Will know more after CT scan next week at least. Just hoping I'll still be fit enough to move house next month. Having been on femara for only a couple of weeks it's too early to tell if it's working.
On the plus side, my breathing is much better, although have to take the stairs slowly and rest on each flight.
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Gail, so glad to hear your breathing is easier.
Scans yesterday.....scanxiety is back!
Hugs
Robin
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Hey gals,
Well, it looks like my nice run on navelbine has come to an end, I have progression in my liver. I started Gemzar today (still at the treatment center now actually). Gemzar is a 70 minute drip...I'll miss those 10 minute pushes.Good luck to you lovely ladies. Robin - best wishes on your scan.
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So sorry to hear about your progression. I hope that gemzar works well for you and is as easy for you as Navelbine.
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Nancy - sorry to hear of your progression. Hope you get better results with Gemzar.
Robin - fingers crossed for your results.
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Gail...glad you're getting some good air back in your lungs...maybe a good sign. Sending strong thoughts for good scans! Hope you love your new place!
Robin...hoping good news from your scans. I have mine on the 19th & I'm already nervous...ugh.
Oh Nancy...I'm so bummed. This is such a roller coaster ride. Up and down, up and down. I know you were thinking this might be coming. All I know about Gemzar is that when I got diagnosed I looked at bc.org for anything on liver mets & there was Denny's post...10 year anniversary! I went to my appointment and asked my onc to put me on Gemzar. She said Navelbine & xyloda were the first drugs of choice....I still argued for Gemzar....cause Denny was alive 10 years later!!!! SOOOO, I'm hoping it gives you 10 x many more years!!!! Still hoping to meet you at a walk one of these days.
Anyone experienced sun rash while on navelbine? My last experience with chemo was in the winter. Our time in CA left me with a really bumpy rash on my arms and face. It wasn't all that sunny but sunny enough, I guess, and I should've been more careful w/sunscreen. I always have it on my face but it obviously wasn't enough. Just another little blip...and such a minor one I'm a little embarrassed to put it in writing. But you're my voices of experience
Sometimes I wish the onc/nurses could give me a little more guidance in the little matters. 0 -
NancyH,
Well crap. That sucks. Good luck on the Gemzar!
DG0 -
Oh nancy....best of luck on Gemzar....I hope it works super for you and treats you kindly.
Hugs!
Robin
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Well ladies, the time has come for me to say goodbye. Got my scan results and slight progression in 3 nodes....and my TM"s are over 1500 now. On to Taxol....best of luck to everyone.
Hugs
Robin0 -
Oh Robin...I'm so sad, mad, whatever I can feel...I am! I'll find you, Vanilla Bean Sisters...somewhere on other posts...take care & be strong!
XOXOXO
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Thanks RK. Our paths will cross again.....no doubt.
Take Care
Robin
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Robin - so sorry you've not had more success with Vanilla Bean. Hoping you have more luck with Taxol.
RonnieKaY - haven't had any problems with rashes - probably haven't had enough sun here for that although we did just have a few nice days for once. Hope it's clearing up.
Steroids are just about helping me to breathe, but it's frustrating not being able to do much just now. Had my CT scan this morning and will see onc on Friday for results.
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Thanks Gail....best of luck to you and glad to read you are breathing even a little better.
Keep in touch.
Hugs!
RObin
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Being kept in hospital again. Got so breathless getting to onc appt had an issue with bladder control when I was in a panic. So embarrassing but staff were really lovely about it. Ct scan not conclusive for lymphangitis so will need to be reviewed. Is more fluid but not enough to drain yet. They have me on liquid oromorph and oxygen so will be monitored here over the weekend. Also have liver mets now but onc says still quite small so less worried about that just now. She has now agreed I can have DS1500 form now so will hopefully get benefits sorted out quickly (you can get it if your onc thinks it's not unreasonable you have less than 6 months to live) this doesn't mean this is my prognosis. She's considering whether to give letozole time to work or try weekly taxol, possibly continuing on letozole with it although she wouldn't normally combine them. So I may be joining you on the Taxol Robin.
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oh Gail, I am so sorry to read that you are in the hospital again. I pray they will get you comfortable and get this all sorted out for you. You've had such a hard time of it lately. Always room for you in the group! Keep us posted on how you are doing.
Hugs!
Robin
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My onc put her foot down so I've had some fluid drained from right side. Registrar thought he wouldn't get more than 500ml but managed to drain 1litre. Think I'm feeling some benefit. Can't do the other side as the talc from the pleurodesis means the fluid builds up in pockets. Only concern now is had the oxygen test done after drain so might be breathing too well to qualify for oxygen at home and it's likely to build up again.
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Had visit from onc and she's concerned Femara would take to long to work given my symptoms. So have agreed to try weekly taxol. Unusually she's going to combine it with Femara. Chemo unit is busy but hoping to get started quickly as an inpatient.
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Gail - I'm sorry you're still having issues with fluid. I hope Taxol is just what you need and you improve quickly. I think of you often.
Cynthia
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Thanks Cynthia. I've been reading up on the weekly taxol thread and it sounds encouraging.
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Gail...sending love & strength! Will read more the next couple of days...missing keeping up. Scans tomorrow...hoping Navelbine will be the answer for a long time...just bummed it hasn't been the answer for too many of my sisters. XOXO
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RonnieKay fingers crossed for your scans. If it's failing for so many of us just now then you should be one of the successes just by the law of averages. I'm sorry to have to change when it was such an easy chemo to do.
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Folks: Need some help here, and would appreciate any information or good karma that you can share. Two weeks ago I began my new chemo combo which consists of my ongoing herceptin plus perjeta and navelbine. My first infusion was a 6 hour marathon of steroids and zofran plus the other three, and I had some of the anticipated SE's which faded over a few days.
The second infusion however, of navelbine only (last Wednesday) has caused just unbelievable and pretty constant pain (huh?) in my hips, pelvis, abdomin especially, and to a lesser extent my rib cage (both sides) and back. It all feels like a very bad toothache, and is in my muscles, joints and bones (I don't have any bone mets).
Gotta tell you, girlfriends, I suddenly hurt alot and it's ongoing. The oncology nurse is positive that it is related to the navelbine, which I know is usually pretty easily tolerated. Meanwhile she has me taking hydrocodon three times a day, which takes the edge off but that's about it.
Any good ideas? Anybody have such a reaction to navelbine? I hurt so much I am becoming a mean girl. Thanks - SUE
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Sorry you are suffering so much Sue. I am no longer on Navelbine but found it a really easy chemo to tolerate. I never had such a severe reaction. Do you have an on call service you can get advice from your unit?
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Thank you Gail for your kind words. I did indeed get in touch as you suggested, and the answer seems to be a small dose of oxycodone every four hours, which I took despite my extreme fear of painkillers. The pain is beginning to pull back even as I write. Nobody seems to know why I have had such an extreme reaction to the navelbine. I guess I just need to get my head straight about taking pain medication - thanks again and best to you. SUE
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