Navigating Navelbine
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Navybean Buddies,
This is pertinent to radiation treatment, not Navelbine, but thought I'd put it here, because SouthernSurvivor is getting radiation as well as NavyBean.
Pain meds weren't handling the pain from radiation treatment. I am getting what they call "bone flare". That, and being repositioned on a flat, semi-hard treatment table has caused more pain than I am willing to take meds to quell. I tried it this morning, and was a drooling zombie. That ain't living.
We are also having our first big snowstorm, and that's probably not helping bone pain either.
So, I had a small tea party of a pity party with the RO, and they have put me on Dexamethasone 2 times a day, with Omeprazale to fight any stomach blues the steroids might cause. I took my first dose tonight, and am looking forward to pain mitigation. This will last a week, then I'll taper down.
Just to let y'all know that you can get pain relief that isn't opiates (fingers crossed). This is a short term remedy while the radiation gets in there and squishes the c-buggers.
Jennifer
PS: After a year of being in increasing pain from my moth-eaten thoracic vertebrae, I have simply lost patience with discomfort. I used to be much more stoic, but I am done with that. I want to enjoy the days.
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Jennifer, thanks for sharing about the pain meds. You are right - QOL is so important. The pain from my mets really isn't too terrible right now. I take Dilauded as needed, which is usually once a day. Dosage only lasts 4 hours. It is concerning to have to consistently take pain meds though. I'm praying this radiation will alleviate both the cancer and the pain in my lower back.
I go in Monday for the radiologist to mark up, map, and do all the prelim stuff for radiation. My first radiation treatment will be the Monday after Thanksgiving. Also, I'm doing a full body bone scan at a nearby hospital this coming Wednesday to see where else I may have bone mets. I need to know exactly what I'm dealing with.
Lisa, I certainly hope Navelbine is still working for you. It's so frustrating when treatments fail. Unfortunately, I (along with many of us) have experienced that way too many times.
Waving hello to Becs, Sherry, Fran, and every other Navy bean sister.
💕💕💕
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Hi everyone! I’m joining you after my journey so far on FEC (Fluouricil, Epirubin and don’t remember what the “c” stood for!), Zeloda, Halaven and lately Taxol. I seem to manage around a year on each chemo before trouble sets in and Taxol was no exception. After progression, next week I start tablet Navelbine. I hate the unknown - what can I expect? How many days after treatment do you feel the worst? What is the worst side effect? If you have been on any of the chemos I have been on, how does it compare with them? I have been reading through this thread but it goes back a bit so I do have some catch up to do here but I thought I would ask a question or two!
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Hi Lovestosing -
Welcome to our small group! I’m assuming you are not living in the US as you said you were starting on the tablet Navelbine and I think in the US we only have Navelbine in infusion form.
My experience has been quite difficult on Navelbine. I actually take both Navelbine and Herceptin, as a recent biopsy showed HER2+ when before I was HER2-. I don’t want to discourage you but just being honest with my experience- please note that yours may be completely different! My biggest issue with Navelbine is that I have absolutely NO energy and for 2 1/2 months I have basically lived on my couch. Taking a shower is a big accomplishment for the day. With that said, when I started cycle 4 (my cycle is 2 weeks on and one week off), I started feeling a bit better and have been able to do more. So, I’m thinking it does get better as your body becomes more accustomed to the chemo. Previously, my chemos have included both Xeloda and Halaven, and I found both of those easier for my body to tolerate than Navelbine. I also should say that I started Navelbine/Herceptin after a big progression, so my body was in a much more compromised state than when I started other chemos. In addition, I recently just found that my cancer has spread to my spine, more than likely right before or shortly after starting this new chemo. Another issue that I previously have not had to deal with.
I wish you the best of luck and keep us updated on how you are doing. Big hugs to you! 💕
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Hi, Southernsur, I ve read tablets of navelbine arent available in the US, do you know why??
My mum is trying luck with navelbine, she is taking 90mg (3 pills) each week, 2 weeks on and 1 off. Its her first cycle.
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Hi Southernsurvivor!
Thanks for taking time out to give me your feedback on Navelbine. I’m glad things are getting better for you on this drug and I hope it kicks your cancer’s butt!
I’m hoping it will be ok for me ... I’m always on the “go”, still working 4 days a week which involves travel and I sing in a gospel choir. My latest scan results show spread to a new area ... my peritoneum ... I had to look that up as I didn’t know what that was ... I had spread to my lungs, liver and bones. There is progression in my lungs and liver but bones are stable. I kinda guessed my scan wouldn’t be good. I haven’t felt so good lately.
You are right that I’m outside America - I live in Inverness, Scotland. Just trying to keep on, keeping on as we all are!
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Dvdsp - sorry, but I have no idea why Navelbine isn’t offered in tablet form in the US.
Lovestosing - I also have stomach mets. If you would like, please see the “peritoneal carcinomatosis” thread, where several of us discuss the issues of having mets spread to the peritoneum.
Take care all!
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Hi southernsurvivor!
Yes I've been following the peritoneal thread. This forum is just so useful. I start Navelbine tomorrow after a week off chemo. Enjoyed my week off. Despite the bad scan results, I'm feeling really good apart from being breathless when climbing a lot of stairs. Had a lovely night in Edinburgh last night but now back to reality! I hate starting a new chemo ... the unknown about what days in the week, you are going to feel crap. I'm trying to plan ahead as I am singing in a few concerts coming up and I have a few Xmas parties to go to as well as the day job lol! I guess I'll have to wait and see and hope it does its jobin kicking cancer's butt. Hope all is well with everyone xxx
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Hi!, my mum is going to take the pills of the 2nd cycle.
Her TM (CEA) has gone up from 109 to 139 after 1st cycle... oncologist has said its normal in the first cycle, it can be caused for cell destruction.
What happened to your TMs after first cycle???
thank you
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Well adjusting to a new chemo is tough and this one is no exception! To put it bluntly, I have never had such a problem having a poo in my life! I was so busy with work that I didn’t realise that I had not passed my bowels for about three days. It was only when I needed to go, I just couldn’t! I ended up exerting myself too hard and my blood pressure dropped and I was dripping with sweat. I can’t believe something like this can make you so ill. I ended up in hospital last night but home now. Got some laxatives so hopefully all sorted now. Anyone else had problems on Navelbine like this
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Lovestosing,
It's nicknamed "Navelbind" for a reason. Personally, I have to take Lactulose every day.
Best of luck getting things moving down here,
Jennifer
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I have had 4 cycles of Navybean, and my hair is so THIN, I am constipated and cant seem to get a grip on that. I went to MO yesterday and my counts were to low for chem so had 2 shots and go back today for another shot. Good news out of these 4 treatments is my tumor markers dropped from 2289 to 1480 so that is a plus. I too have spent way too much time in my chair, but my head wants to do so much stuff and my body says no. I want to feel better and be able to do more.
What did or are you ladies doing for constipation?
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I've just come back to my desk after doing battle with cement tummy. I usually end up taking Lactulose. For me, it works without cramping. It's prescription, but your MO should be able to call it in. I'm under orders to take some everyday.
It's good to know I'm not imagining the hair thinning. I use those fiberfill powders on very short hair to give the illusion of proper hair.
Great news about your TMs! As your body repairs itself, you'll be busting out of that chair. It doesn't happen overnight, but it does happen.
Jennifer
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Just got back from my second week treatment (three weeks on/one off). All TMs have decreased by about 20%, which is cool, and I'll attribute it to the radiation, as I was on Navelbine for several months before the radiation started.
Still having a bit of trouble with vertebrae T6/7. They may need to be spoken to again.
I need to watch my hemocrit. It is the lowest it has ever been. I still wanted to decline Procrit and/or a blood transfusion. Gotta say, I think I'd prefer a transfusion over procrit, as the latter has a nasty habit of encouraging tumors to grow.
So, I have about 10 pounds of various organic, grass fed beef stuff in the frig, and will attempt to eat as much of it as I can (spouse will gladly step in). Sorry, my cow friends - I wouldn't do this unless I had to. I avoid any factory farmed meat and dairy - that system is just too cruel*. We have a local, humanely sourced meat shop. It is more expensive than factory farmed meat, but the FF meat is partially responsible for the explosion of hormonally based cancers and the rise of antibiotic resistance. Nope - no opinions here, right?
If anyone knows how to grow a hemocrit, I am all ears (and a big nose). I do know to combine it with a vitamin C source for maximum absorption.
* Any cow dairy is too cruel. Even in an organic, humane barn, the bull calves are pulled off their Mum 24 hours after birth, and set to live the rest of their lives in a veal shed. They are fed milk replacement, and barely have room to turn around in the veal shed (picture a large dogloo). They are sent to slaughter at 18 - 20 weeks of age, hardly having experienced their mother's care, or grass, or running in the sunshine. This is so Mom can give all her milk to we humans. You see, she has to have been pregnant to make milk, and will need to be re-freshened every year, or thereabouts. The girl calves have it a bit nicer, as they will grow up to become dairy cows, so they have access to a social life and a bit of fresh air. When their milk production declines, they will become your next hamburger, or dog food.
You see my problem with beef and dairy now? I can't eat pork either. Have you met a pig? They are very funny. Same with goats and sheep. If I eat meat, it's fish or chicken. A lot of people truly love chickens, but that has never happened for me, so I can keep eating the little dinosaurs. I wish I liked lobster and shrimp, as they are glorified sea bugs, but shrimp have some hair curling farming practices, and lobster costs a ton, with no real benefit to one's iron level.
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Hi, today was going to be the 3rd cycle of navelbine for my mum but CEATM went up again (1st cycle from 89 to 139 and now 139 to 160).
Oncologist has decided to change treatment, I thought navelbine was so effective in almost breast cancer (although i dont know why is not very used).
My mum has a skin met and its the same size clinically but her TM always showed very well her response to treatments.
Any of you had no success with navelbine? And what treatment was effective?
Hugs
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Hope you are looking forward to some lovely holiday time. I have made the decision not to have chemo in the holidays - time is precious and I want to have special times with my husband and son rather than feeling sh1t on chemo. This Navelbine would be manageable but for the constipation and the irritable bowel problems Ive been having. A couple of nights ago, I was in such pain that I was bent double when I walked and when I went to bed, I couldn’t turn over onto my side. I am on laxatives but they are so slow working that sometimes you end up taking too much and then when it works, it works!!!!!
Feeling quite miserable just now but a hot water bottle on my tummy and relaxing in a chair not putting too much pressure on myself to do anything sure helps. Gotta do whatever you gotta do to get through
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Lovestosing,
What laxatives are you using? I've had the best success with Lactulose. It's prescription, but very gentle, so that I don't end up "overcompensating", you know?
As long as I keep enough fiber in my diet, either through food or Fiber Choice tablets, and daily, small doses of Lactulose, the constipation pain is gone.
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Hi Blainejennifer
I've been prescribed Laxido and it certainly isn't rapido! It takes days to work. I took my chemo on Monday and have been taking laxatives since Tuesday but I'm beginning to think I need a stick of dynamite to get me going! I'm off chemo until 7 January and I'm planning a curry on Christmas Eve so hopefully it will be all systems go soon! I think I'm susceptible to irritable bowel anyway and I've had some stressful things happen to me lately apart from dealing with the cancer so I'm sure that won't have helped. I do eat a good diet but hand on heart, I probably don't drink enough. I was prepared for the big Ds on this chemo like I was on tablet Xeloda -not the other way round!
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Lovestosing,
Oh yeah - you do have to keep drinking fluids. Sloshing is the preferred state. Does your system kick start with a bit of caffeine? There's a powder made of inulin that you can put in all your beverages for a great source of soluble fiber. Plus, it's very good at regulating blood sugar. I buy a version called "Benecal". I've been recommended Miralax, but I'm a super taster, and I swear I can taste it.
I'm truly lactose intolerant, so if I'm in a desperate bind (pun intended!), I'll eat some of my husband's cheese. Makes me feel like I'm poisoned, but, it does rally the troops.
Here are some other tricks I've heard of here:
Prunes and/or prune juice
Sugar Free Candy - the malitol will get you a reservation in the loo. The Haribo sugar free gummy bears are legendary in this regard.
Glycerin suppositories in case you have a plug situation that is impeding setting the rest of the bowel free.
Squatty Potty - dang if it doesn't help, though I keep stubbing my toe on ours.
The good, old fashioned combination enema/douche bag. Filtered, boiled water that is room temperature, and a lot of it. This can require teamwork. For me, gravity works better than trying to squeeze the smaller commercial bottles. Then, you know, bum in the air till the air strike is called in.
A nurse with the handle sas-schazti used to have tons of bowel advice on this forum. I'll look to see if there is a good link.
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Blainejennifer - thanks for all these tips... plenty of good for thought! I’m going to adopt some of these
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How soon did your oncologist determine if Navelbine was working? I've only been on it for 2 months, but my tumor marker numbers have gone up! Of course I'm concerned.
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For me, the tumor flare starts to subside at about month three. If it keeps going up after that, it is reassessment time.
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Hi all -
I wanted to check in here as it’s been awhile. It was an extremely rough Dec and first couple of weeks in Jan for me. I started radiation after Thanksgiving for my new spine mets. Was supposed to have 15 rounds, but I barely made it through 13 before I ended up in the hospital. The radiation caused severe big D that we couldn’t get under control, which then resulted in critically low potassium, which then resulted in a hospital stay. I was so incredibly weak and had lost a lot of weight. Appetite was poor and anything I did eat went right through me. I really thought I had some unbelievable intestinal infection (cultures showed none but did have a raging UTI) as I’ve never had such terrible D for so long in my life. Even after I got discharged from the hospital, I was in the cancer center daily getting potassium via IV. Those infusions have to be slow, so it took all day. I hadn’t felt that bad and weak since I was on a feeding tube in 2014/2015. I stopped radiation Wed, Dec 12th, and it took a month to recuperate. I’m still not where I was physically prior to radiation. Side note: besides my bones, my cancer is in my stomach, so that probably caused havoc with the radiation too. Also, I never expected these complications as my original 30 radiation treatments on my left breast in 2008 were a breeze. I guess the radiation location this time really made a huge difference in the side effects.
In addition, I had to take off one 3 week chemo cycle being so sick, and my TMs jumped 60+% over those 3 weeks. Seriously, I can’t seem to catch a break! Last Friday, I started back on Navelbine, and I’m praying my TMs go down again. It’s amazing how you can lose your muscle strength so quickly and it takes a lot of time to build it back up. I’m taking it one day at a time and getting plenty of rest right now. Trying to do a bit of laundry and things around the house as I feel up to it. I’m in my pjs daily and don’t leave the house right now except for doctor appointments.
I certainly hope y’all are faring better than I at this point. Cancer really sucks!
Hugs to all 💕
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Jennifer, are you still on Navelbine? How is everyone else doing?
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I had a Pet scan last week, which showed some tumor reduction, which is good! However, tumor markers are still increasing. My onc. says the scan results are more reliable than the tumor marker numbers. So I'm continuing on Navelbine, Herceptin & Perjeta for the next few months. If I have progression, then Kadcyla is likely next. I had progression in 2016 while on Tamoxifen, progression in 2018 while on Herceptin, Perjeta and Letrozole, severe reaction to Taxol & Abraxane which resulted in starting Navelbine. It scares me to think I'm running through the available treatment options so quickly.
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Hi all - how is everyone doing? I wanted to check in and keep this thread going. There seems to be just a few of us on this chemo.
Mic96 and Lovestosing, are y’all feeling OK? I’m still not used to the Navelbine. I’m so tired too that I find it hard to get anything done - errands or just around the house. I’m in my pjs A LOT these days!
Take care and I’m saying a prayer tonight for all of us.💕
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Hi Southernsurvivor. So lovely you’re thinking of us even though you have lots going on yourself. If it’s any comfort, I’m finding Navelbine tough on my energy too. I’m on tablets two weeks out of three. I take the tablets on Monday and I seem to be ok until Friday and then I completely fold for a couple of days.
I do think it’s working as the swelling in my tummy and chest has reduced. I looked about 9 months pregnant in January and I had to take time off work which is virtually unheard of for me. It is really hard getting used to these peritoneal mets. It is like having rocks in your chest and stomach and although I now have a good appetite again, I’m adjusting to eating smaller meals because you really pay for it if you eat even a little too much more than you should.
I have to say this last month or so has been the toughest time I’ve been through since I became Stage 4 in 2015. My mum died on the Friday before Christmas and I spent NewYear in hospital. I’m really bad at posting regularly but I always read others posts. I sometimes feel too knackered to do anything and this is so unlike me not to have energy - I’m usually always on the go! I had a scan a couple of weeks ago and I’ll get results later this month. My hair is growing back so it will nice to have my own hair if I stay on Navelbine
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\8question How long have you been onn Navelbine? I have been on since Oct 26 2018 I am finally on a 2 weeks on 1 week off.No real side effects just thin thin hair, I prob should shave my head. I have neuropathy in my fingers making this hard to type.
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Lovestosing - you have had a rough go of it too lately. I’m so very sorry to hear of your mum passing. Then you were in the hospital a week later?! Too much to handle. Yea for the tummy reduction. I pray that Navelbine is working for you and you begin to gain some energy back. It’s difficult, for sure.
Goincrzy8 - I’ve been on Navelbine since the beginning of September 2018, so 5 1/2 months. I’m 2 weeks on, one week off too. I do have Herceptin one of the weeks too, as it’s only once every 3 weeks. My hair actually has grown back some, after losing about 70% of it on Halaven. It’s very thin though, but I think I can get away without a wig or hat once winter is over. Right now, my head gets too cold outside to go without a hat. Did you have neuropathy before you started Navelbine? You sound like you are otherwise tolerating Navelbine well, which is so great. I had a tough time with it for the first 2 1/2-3 months, as I just didn’t have energy to do a thing!
Take care, gals - hope you have a good week! 💕
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Hi guys!
I'm just needing some support today. I started Navelbine in December, found the constipation side effects overwhelming and ended up hospitalised. In early January, I looked 10 months pregnant due probably to my peritoneal mets and my liver mets and I was so unwell that I had the go off work sick for a couple of weeks. A CT scan was ordered when my tummy was very swollen and I had this scan about three weeks ago by which time I was back on the chemo and my tummy had gone down and it has since reduced further. I get the results of the scan next week.
I'm feeling really down because I thought with the chemo restarted, by now I thought I'd be feeling much better than I do just now. Yes, I'm a lot better than I was in January but do I just need to be patient? I am so tired all the time, I can't eat as much as I normally would (!) and apart from work, I'm too unwell at night and weekends to do my singing lessons and I have had to miss loads of social things. I just lie on a recliner chair and sleep. I've been lucky up until now - luckier than others that all my chemos have worked for a while and not been too bad (apart from Docetaxol and that was only really awful for a couple of days).
I feel the outcome of the scan is not going to be representative of how the chemo has been working as I hadn't had many cycles when it was done and I am a bit better than a few weeks ago. I'm going to see if I can change my chemo day from Monday to Wednesday so that my worst day going forward will be Sunday when I generally don't have much on. I'm keen to stay on Navelbine to give it a chance and for a vain reason (my hair is growing back!)
Anyway, that's my most and groan for today! What a difficult cancer world it is to navigate through. I don't know what I would do if I couldn't come on here and rant!!!!!
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