2017 NAVELBINE DIARY

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stagefree
stagefree Member Posts: 2,780
edited June 2017 in Stage IV/Metastatic Breast Cancer ONLY

I READ ALL AVALABLE THREADS ON NAVELBINE, WHICH ARE OUTDATED AND DECIDED ON THIS ONE. HOPE MY EXPERIECES HELP😀

21.03.2017

Day 1: ok here I go! The infusion took 2 hrs straight, I received 40cc Navelbine (Vinerolbine) at the University Oncology Research Center. image

Having Coolbreeze's warning almost 5 years ago on Navelbine infusion from vein (to those without port), I insisted on infusion on the Foot. My ankles and knees are still swollen from past chemo Xeloda. The nurse preferred the right foot. Chose a big vein. The infusion finished without much fuss.

I first received 16mg dexametazon, ulcuran and feniramine with saline. Then received the Navelmine and saline( not mixed but simultaneously) slowly.

Then, vein washed with 500cc saline.

The nurse put warm pack on the vein for 10 min, for the vein not to "burn" from Navelbine. Yes, Navelbine is given through port for a reason, most veins on the arm cannot handle the stuff.

So I offered my foot. ;)

Since I will continue from cycle2 onwards in oral form, I opted to avoid the port for now.

I slept the entire afternoon, after infusion. Had some soup, mashed potatoes and crackers for dinner. Will be having a late snack, trying avoid heavy stuff not to upset my stomach.

I currently feel OK so far. I feel the vein is 'warm' despite the fact that I put warm pack as I slept on it .. so gals, Coolbreeze is right! Reading past threads and chemo info on BCO helped from day one!

I haven't received Neupagen yet, as generally suggested by many sisters, yet will seek for red-blood-level boosting stuff first thing..

I took Zofran in the morning and before dinner, as a precaution for nausia. Feel ok.

Planning to have some apples/fatfree yoghurt/maybe a sandvich later tonight.

Ebru

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited March 2017

    Ebru,

    Thank you for sharing this - what a great alternative to arm infusions, especially if one has lymphadema. Your comment about Xeloda and swollen knees and ankles intrigues me - can you elaborate? I've not heard of this side-effect from X.

    I hope Navelbine works for you...

    Thanks

    Amy

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  • stagefree
    stagefree Member Posts: 2,780
    edited March 2017

    thank you amy for your response. The swollen areas are getting better now. As I've been a long-term x user, any SE was expected anyway.. I have many on my X experiences on the Xeloda thread.

    day 3: yesterday I was numb, sort of like drunk and not really could focus on anything.

    Tell me about Navy Bean! Gals, I have diahhea, not constipation! Now trying to control it. Other than that a bit loss of appetite.. thats it.. so far..

    will be taking the second cycle on Tuesday..


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  • Tina2
    Tina2 Member Posts: 2,943
    edited March 2017

    Ebru,

    It's thoughtful of you to perform this public service for those starting Navy Bean. I hasten to add that am not. I'm still gratefully on Faslodex, but I like to keep up with you via your posts on this thread. Sue Opp calls it Navy Bean, too. You should consult her. I remember her talking about diarrhea as well. (In our house, we call it Dire Rear.)

    Wishing you all the best,

    Tina

    P.S. You have lovely, long toes. And your nail polish appears to match that currently on my fingernails!

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  • stagefree
    stagefree Member Posts: 2,780
    edited March 2017

    Dear Tina,

    I couldn't have taken off those socks without having had my pedicure first ;) thank you for the nice compliment :)) I'll be pm ing Sue right away!

    Yes, I noticed not much is on Navelbine, so decided to start this thread. Though I will be on pill form, I feel it'll be similar experience as with IV form.

    Day4: forgot to mention MO's promise of no hair loss, so roots already dyed. And I have almost shoulder length hair now. I admit Xeloda was kind to my hair during our flirt of 5 years, causing just a bit of thinning of hair.

    Today I awoke quite normal, with normal appetite, yet still being careful not to upset tummy. Reduced antinausia meds by half, to see how I'm doing. Even had half a portion of lamb kebab for dinner.

    The dizziness is over, though not ready to drive yet. I hope this SE is that this is the very first cycle.. thumbs u

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  • stagefree
    stagefree Member Posts: 2,780
    edited March 2017

    ok.. here's the news.. exactly a week after the first cycle (IV), I took my fist pills 100cc yesterday. 2x20, 2x30. MO calculated the dose according to my weight. 65kg now.

    I took them after breakfast with really cold yoghurt, not to let the gels immediately melt in the tummy.. a tip I fpund on the net.. Also took two Talcid tablets (antiacid) with them -thanks SueOpp for the tip! - and things were fine till late afternoon.

    Suddenly I started shivering and high fever kicked in. 38,6 degrees, yet I was dizzy, lost my orientation, sort of drunk..

    took about 4,5 hours like this. I wrote to MO, meanwhile I drank gallons of water. Late night the fever dropped, thank God!, and I slept.. waking up occasionally to change my soaking wet nighties due to night sweats.

    Been having these night sweats since TMs skyrocketed. Cool about it since I had 'em before back when TMs were 3000+..

    today I'm fine & time for breakfast!

    Navelbine seems to like to warn the c-buggers it's coming to get 'em when first taken, which is fine. I am glad to be really experienced about the tummy and am proactive though.. Xeloda taught me so much!

    My dizziness seem to be off for now, but I'll take things slow anyway for a bit..

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  • Kandy
    Kandy Member Posts: 1,461
    edited March 2017

    Ebru, wanted to let you know I'm thinking and praying for you. I hope chemo is kind to you and kicks those buggers to the curb. You are very grave to let them stick your foot. That is a very sensitive place to be stuck. At least it was only one time and now you get to go pill form. Wishing you the best. Enjoy the moment.

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  • stagefree
    stagefree Member Posts: 2,780
    edited March 2017

    Kandy,

    You bet it was sensitive indeed. The nurse herself was hesitant, but I encouraged her. And well worth it! Even that big vein sizzled a bit and was numb for an entire week -I had 500cc saline wash! - I can't imagine my zometa tired arm vein meeting Navy stuff!

    So it's been confirmed, port is a must with continuing IV Navelbine.

    Tonight we are invited a to friend's house, a popular rock band is plating for us, a small party of friends.. and I have blisters all over my lips. Navelbine is playing around with me.. It has no victory yet on the GI area, as I am fully armed and proactive with that ;), so there are other areas it wants to show off! Then I think it's no wonder, since I did have HFS on the face !!!!! with Xeloda, instead of my hands and feet..

    I made an appointment with my makeup artist, no way I am not enjoying myself tonight!! Ha ha:)) those who know me get what I mean!

    Other than lack of appetite, which I ignore and eat, I also lost 4kg (most of which was AI&Zoladex caused anyway) already.. thank God one good SE, as I was really a baloon the last few months :)

    Btw I am celebrating 5-year cancerversary this month.. time flies... every one, just hang on!

    Spamgirl & Jilltut, I am thinking of you the last few days, hope both of you well up in the clouds..

    Ebr

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  • MSL
    MSL Member Posts: 101
    edited March 2017

    Congratulations on 5 years - you are an inspiration to us all.

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  • stagefree
    stagefree Member Posts: 2,780
    edited March 2017

    Dear MSL,

    I have been having so much inspiration from such lovely ladies since dx, that I feel not only obliged but also happy and honored offer whatever experience I have been having to everyone else. So thank you, indeed for your response.

    I probably had the greatest time tonight since last year, it's been a bit tough which is no secret. The band was great, we had after party with them gathering around the piano singing Let It Be, Living on a Prayer and the finale of course Knockin on Heaven's Door.. DH also played / sang a song of his own. Happy night just over, 2:30 am here!!!!

    One day at a time seems to have been working just fine for me.. :

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  • Groovywilma
    Groovywilma Member Posts: 450
    edited April 2017

    Hello! Thank you for starting this thread! I, too, have been reading the old Navelbine threads for info. I started with my first infusion today. I had it through my port and got anti-nausea meds before. Feeling tired and will continue to monitor side effects. I wish you luck with this treatment! I don't have the options of taking Navelbine orally. Looking forward to sharing and comparing experiences. Thank you! Happy April!

    Wilma

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  • stagefree
    stagefree Member Posts: 2,780
    edited April 2017

    Hey Wilma, welcome 😊

    After the second cycle, I can say the fatigue lasted about 3-4 days for me. And I should say the second cycle has been actually easier (considering I took 100 this time) than the first.

    MO warned me about taking lots of protein with this chemo. I eat frequently, mostly fresh veggies & fruits along with lamb, fish & dairy goods.

    I don't think SEs will differ much with the form of Navy we're taking, GI is to watch out from day 1, which I am glad you're doing. Nausia doesn't necessarily mean vomitting said one MO a couple of years ago. Loss of appetite should be taken care of, he had added. Especially yoghurt drink with whole wheat crackers and apples on infusion day help tummy feel comfortable, I figured so far. And the good news is the joint aches and severe edema I had on my knees and ankles which lately made me unable to walk without aid have already improved, so hopefully I'll start walking every day soon. I need to exercise, I feel like pudding! And one more good news, I lost 5kg so far without doing anything. The previous combo of chemo&AIs put 15kg, I hadn't gained that much weight even when I was pregnant. MO says it is good to have some extra weight for body strength, bıt we have to also make sure it's not as much as putting to much pressure on the bones.

    We're also not expecting much hair loss with this chemo. I have great hair products and enjoy looking after my hair still. ;)

    I am looking forward to your experience with it.

    Hugs

    Ebru



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  • AmyQ
    AmyQ Member Posts: 2,182
    edited April 2017

    Ebru

    Thank you for the diary - it's most helpful and encouraging to read about your somewhat minimal side-effects. I never minded losing weight on Ibrance, although my kids thought I looked sick my husband thought I looked healthy - go figure!

    Anyway, thank you as we join you in your journey.

    Amy

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  • Groovywilma
    Groovywilma Member Posts: 450
    edited April 2017

    Thanks for the welcome, Ebru! This first week on navelbine has been rough for me. More aches and pains, and a tenderness in my salivary glands (lymph nodes?) when I eat. I asked the doctor if adding decadron will help alleviate these symptoms. This week has made me consider taking a leave of absence from work. I hope things improve. Thanks for providing a place to discuss and compare symptoms! How is the oral navelbine? Do you take it once a week? What pain killers help relieve your pain best?

    I guess it's a good thing I went on vacation before I started this! Went to San Francisco, and then Maui last month. I definitely would not be able to enjoy those trips if I had already started this treatment.

    I hope you are well!

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  • stagefree
    stagefree Member Posts: 2,780
    edited April 2017

    Thank, Amy.

    Wilma, today I took the third cycle dose. It's 2 weeks (once per weekly) on and 1 week off.

    The first 2 cycles didn't stop TMs skyrocketing, so we'll decide whether to move on to Gemzar in 3 weeks, with MO. Ugh!

    Today I took 100, previously had 60. Feel fine, though a bit tired. SEs have been minimal, fatigue being more noticable.

    Btw Xeloda HFS started after I quit it, no kidding. Finger nails breaking and hand skin peeling off.. ugh!

    MO encourages me start swimming soon. My knees ate killing me, will be visiting a new pain doc tomorrow about it.

    Hope, I really have the chance to get this thread going on.. I have mixed emotions about leaving a chemo so soon.. ugh!!

    Hugs :)

    Ebr

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  • Groovywilma
    Groovywilma Member Posts: 450
    edited April 2017

    Ebru,

    I hope you don't have to change chemos any time soon. Will you be rescanned soon to see how navelbine has been helping? I hope you get some benefits out of this!

    For me, I have been having such a difficult time on this treatment. A lot of pain, fatigue, constipation, mouth sores, nose sores, etc. It's been a struggle for me. I am going to see if reducing my dosage might help me manage the side effects better. I hope it's working to zap the cancer, but I also need to find a way to make this more manageable! Cancer is no fun!

    Hope you are having a lovely weekend. Keep us all posted!

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  • stagefree
    stagefree Member Posts: 2,780
    edited April 2017

    Dear Wilma,

    Will be taking 4th dose on Tuesday. Taking in the afternoon helped me skip bad SEs in sleep, as I could tolerate it afterwards. It causes lack of sleep, I'll be visiting my psychiatrist, should I keep taking Navy. I'll have MRI before seeing MO to decide on my future meds..

    yep! Mbc certainly sucks! Had a lovely brunch today, tough. That saved today. I watched my son playing with the ball in the sun for hours.. it was heavenly. :)

    Each day, each moment count! Hang on!

    Hugs,

    Ebru

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  • Groovywilma
    Groovywilma Member Posts: 450
    edited April 2017

    I bid Navelbine farewell. I only had the two infusions, but had such extreme side effects. My doctor said I should not be suffering like this! He said just because your body did not respond well to this chemo, does not mean it won't respond well to another. We have decided to move on to Taxol. So I also bid farewell to my hair, for the first time!

    Wishing everyone luck here. It's supposed to be an easier chemo, but not for me. Ebru, I hope things go well and keep on enjoying each and every single moment! Thanks for reviving this thread! I'm sure it will be helpful for many others.

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  • zarovka
    zarovka Member Posts: 3,607
    edited April 2017

    Stage Free - Thank you for this diary. So very helpful to everyone here. I am glad you are doing well on Navy Bean and your pedicure is lovely.

    Following.

    >Z<

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  • stagefree
    stagefree Member Posts: 2,780
    edited April 2017

    Dear Wilma,

    İt's really a lottery with each chemo. Many experience one thing, but it is the one exception, that is you which change the game. I hope Taxol, which is a big gun indeed, kicks some c-bugger butt soon and is managable for you.

    Interestingly, I have no intestinal problem, so far. But should admit, I 've been on a special new diet managed by a professional team, according to my specific nutrinitional needs.

    Xeloda had me smell druggy all the time, which just wouldn't wash off. Glad, Navy doesn't smell at all. And having compleded 4th cycle, I can say My seollen feet & ankles have come to their senses. I have downsized to haşf, no kidding. It was probably the Zoladex, Arimidex mainly had me bloating. Somehow I tolerate chemo better than AIs, both bodily and psychologically.

    I really hope this chemo is working, as this has been the easiest so far. Even chemo gas is minimal. I was a Fartarella when on Xeloda.

    I should say, I had strong joint and muscle ache on day 3-4 of last cycle, which I hope means the battle going on.

    The worst SE is still the insomnia and the nighly sweating (?), which I am waiting to act upon for MO's decision to continue with this chemo or not.

    The black spots on the bottoms of my feet from Xeloda, also already dissapeared.

    Neuropathy has improved, also. I have occasional tingling still, but definitely feel better.

    Do feel lack of energy during days, but am used to taking things slowly. This IS a chemo after all.

    I take all protective medicine, stomach, etc, at all times, not waiting for a warning sign. Docs underlined I should be proactive as I already am.

    Guess I should get ready for the MRI now. Fingers & toes crossed ;)

    Hugs all

    Ebru


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  • zarovka
    zarovka Member Posts: 3,607
    edited April 2017

    Thinking of you Ebru. I am so happy to hear you are well cared for and doing well. Way to watch out for yourself.

    >Z<

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  • Groovywilma
    Groovywilma Member Posts: 450
    edited April 2017

    Ebru,

    Glad you are tolerating this chemo well! I hope your scan shows great improvement! Did you notice any hair thinning? After 3 weeks from starting the Navelbine, my hair started thinning quit a bit. I think maybe part of it was the stress from how difficult it Navelbine was on my body, but I also had significant hair thinning when I started Gemzar last year. My hair just thinned and was not noticeable to too many people (i have thick hair to start with). I'm guess that was happening to my body again this time starting the new one. But with Taxol I'm expecting serious hair loss, so I'll see what that looks like! I'm ready for it.

    I read your other posts about pain management. I realize how uninformed I really am about it and how very important it is to be prepared for managing pain. I am much more prepared as I start Taxol and moving forward. That's why these discussion boards are so important! I learn so much!

    Have a wonderful day!

    Wilma

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  • stagefree
    stagefree Member Posts: 2,780
    edited April 2017

    Dear Zarovka, thank you, indeed! :)

    Yesterday I was prepairing for the MRI, the guys there said, it would take a bit.. it took 45minutes! I survived that, thank God! And holding your breath each time was looong, I tell ya! As I was leaving, they were informing the next patient, his filming would take 4 minutes. He said "no way, I won't get in that hole" I was amazed ha ha.. guess I AM used to the bumps on the road by now. Really hope this chemo is working..

    Wilma, I am on a special diet as I wrote & and really look after myself. But the key point is as little stress as possible. I try to see and look after my body free from the thought of c-buggers, the treatment etc. Yes, I lose hair and I tell you especially after getting them back from Taxotere, I use the premium stuff, masks, lotions everything. Still have hair. Started growing them even. MO said no major loss is expexted on Navy or the possible Gemzar waiting down the road. Yet, it is the stress, the building up of tension, the expectation of each possible SE listed on the prescriptions that get us moved. So, don't really focus on them, get a manicure! I used Xeloda for quite a long time, 5 years, did have bad days but focused on the better ones.

    Taxol is a good gun and one los have benefited from. Hope you do, too.

    Not just pain management, stress & anxiety management and proper diet is crucial. Please do visit a psychiatrist, as a need not a luxury. I found all this out right at the start. MOs are responsible to keep us alive, the quality varies depending on the med team!

    Hugs

    Ebru

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited April 2017

    I appreciate this diary too Ebru. I'm not there yet but all of this is so useful for those to come. I hope this works for a very long time with very minimal SE's. You are right, one day at time!

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  • starbrightlyshines
    starbrightlyshines Member Posts: 344
    edited May 2017

    Ebru-what special diet are you on? I am so interested in this, it seems like my oncologist just says to "eat healthy" but it is so hard. I am gluten and mostly diary free, so I do eat a lot of protein. Fresh fruits are easy, but veggies are so much harder to get in. If someone else makes me a salad I will eat it, or if I go out to eat I will order it. But it just doesn't sound good at home, and I get lazy.  I need to get motivated again, last year I was juicing and really eating much better than I am now.


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  • stagefree
    stagefree Member Posts: 2,780
    edited May 2017

    hi dear star,

    I consulted with a cancer dietician right after dx 5 years ago.. there should be a detailed thread where I shared it all, already, strongly suggest you look it up.

    Eat healthy is blah advice.. there are specifics to take into consideration.

    Hope my past advice help you.

    Btw navy has been beaten up by the c-buggers after only the 4th cycle :/ so I move onto Taxotere tomorrow..

    hugs

    Ebr

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  • sharmal
    sharmal Member Posts: 55
    edited June 2017

    Hello everybody.I am from India. My mom is diagnosed with Metastatic Breast Cancer (20 months back) in Lungs and multiple bones.

    The disease is recurred after 7 years of gap from Stage II. she has completed 6 cycles of Palbociclib (125 mg) + Femara this month and now after PET Scan (June) report, Onc. has switched her on new medicine (Navelbine 50 mg IV ) with Carboplatin 450 mg.

    Apart from that, she is on monthly shot of Zoldonat 4 mg also, which will be continue going forward too.

    I want to know what are the side effects of Navelbine, are these tolerable?? My mom is 62 years old. She has tremendous will power.

    I am also worried that Dr. has suggested to plant a port to vein for Navelbine chemo. is it necessary for it??

    I have read here that Navelbine is also available in Oral form. But not sure if it is available in India.

    With best wishes and blessing,

    Lalit.

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