Navigating Navelbine
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Petjunkie, sorry to hear about your jaw, that sounds awful.
Lotusblossom, Wow! What a great run you are getting from Navelbine, awesome!!!
I hope we all do as well!!
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@ Petjunkie
Hi. I'm new to this thread..started Navelbine this past Tuesday, felt fine that day and Wednesday but Thursday early AM WTF? Serious aches and pains and bone pain in spine and other bone mets spots. But, nothing my regular pain meds didn't cover. The nurse told me to expect increased bone pain in area where I have spinal mets, said it would mean probably the Navelbine was "working" on those spots.
BUT, OMG the jaw pain! I was not prepared for that! Went to ER concerned about possible cardiac isssue as I was scheduled for stress test Monday due to chest pain I had intemittently before I even started Navelbine (wasn't really too worried about that, it was I thought most likely my reflux causing esophageal spasms but cardiologist wanted to cover his ass). I've had that on and off for years as I had surgery for reflux years before my BC diagnosis. But the unexpected jaw pain got me worried and anxious...better to be safe than sorry as jaw pain can be a symptom of a heart attack, even without other classic symptoms.
They did EKG and checked thrombin (an indicator of heart muscle damage, used to determine if you've had a recent "silent" heart attack), all ok, low WBC and platlets but nothing to write home about. Then a CT scan of jaw to rule out serious jaw bone infection, nothing there either (thank god). Had read about jaw pain as rare side effect before going to ER so I guess I got my answer! Wow, my regular methadone and hydrocodone doses (low) didn't touch it. Added a little advil (ugh more reflux from that) and more hydrocodone but not much joy. More reflux. Blech.....Called my onc who said he had never seen jaw pain with Navelbine and was not even aware it was a documented side effect! Checking in with dentist Monday but onc expects that trip to be "low yield" (what are we making uranium here?). Don't get me wrong, I love him anyway....just teasin
Petjunkie....How's your jaw pain now? Is it still just on the one side? You know, I used to get left arm, neck, jaw, face pain even before Navelbine due to cervical spinal mets and muscle spasms. Do you have C spine mets? I ask cause my jaw pain is on both sides, without the arm, neck, face pain like you describe (except you didn't mention arm pain). It feels to me more like when you have an infected tooth, not like "bone pain" from mets. Maybe you should get a c spine MRI just to check on your spine, since your pain is only on one side. ..although it is probably the Navelbine. It seems it would be an unlikely coincidence that you would be getting referrred pain to your jaw and face from a c spine mets exactly when u started the Navelbine. Certainly a PET scan would have revealed that. Another thing to discuss with your oncologist is your cardiac function as jaw pain can sometimes be an indicator of cardiac problems (especially in women who don't always get classic heart attack symptoms). Such cardiac related jaw pain is usually described as being on the left side only. Don't get alarmed now, I just think you need to bring it up with your oncologist when you talk next, unless you get left arm pain, chest pain or shortness of breath or pain gets substantially worse or out of control. Be careful not to cover up new symptoms with your narcotics without talking to your doctor, OK? I don't know what other chemos you've had, some can cause heart damage, so I am cautioning you in case you were not aware of these facts. As I said, better to be safe than sorry. Please do not panic, just be careful with those pain meds!
Last night I actually cut small pieces off a lidoderm patch and placed it under my ear down jawline. I DID manage to get to sleep so going to try that again tonight with extra advil and hydro.
Let me know how it goes with your jaw pain.
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So, the lidoderm patches sort of helped but woke up still with pain. It came and went all day between doses of advil and hydro. What I DID notice was that my parotid glands (the ones inside your cheek) look red and irritated now, whereas they did not before. Inside my cheeks there is a bit of swelling. So, I'm wondering if the Navelbine caused a blockage in these glands. Interestingly, Navelbine is used for Salivary gland tumors so I know the medicine makes its way to these glands. Also, I spoke to a doctor friend who said that some lymph nodes travel between the musculature and nerves surrounding these glands. So maybe the nodes are getting dosed and swelling putting pressure on the channels leading to the glands. Anyway, I'm going to my GP monday to have her check things out again. Just some changes/ thoughts I thought might be of interest to those with jaw pain.
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@Snooch1 - I'm a several days out now from my first Navelbine treatment. I have noticed a sensitivity in my jaws when I eat, it goes away after a few minutes. The chemo going to the salivary glands makes sense to me.
My worst side effect has been from the Xgeva I got the same day as the Navelbine. The aches and pains in the bones have been much worse than I've experienced before. Still tolerable, aleve helps. Never needed the aleve before.
Fatigue is setting in. Onc doesn't want me to use my ritalin for now. She wants to see my labs first. Has some concerns there.
Expecting either neupogen or neulasta pretty soon to keep the WBC up.
All in all, I think I can do this if the side effects don't get much worse.
Good luck everybody!
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Snooch, so sorry you are having this too but I am kind of glad that I'm not alone! I feel a little crazy.
I just had an EKG and MUGA, so my heart is in good shape. Dentist did x-rays and exam and found nothing wrong with teeth or jawbone.
My jaw pain is just on one side, and thankfully it isn't constant. But when it hits it's awful, I want to climb the walls. I take 10mg of oxycodone and it takes the edge off, but doesn't take away the pain. It's seriously awful.
Navelbine also makes my rib mets hurt like crazy, but that is getting better with each dose. The first few rounds were pretty bad pain-wise, now it's just an ache. I'm taking that to mean that the navelbine is burning out those rib mets and killing off the cancer.
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I had my second Navelbine on Wed., and I've had less shooting muscle pain this time than last, but I am having more rib cage pain this time. It sitll kicked me to the curb and I've been mostly in bed starting Friday, just like last time. I feel less weak and unsteady today, so it's following the same pattern as last time. I'm encouraged by the fact that my side effects weren't quite as bad this time. Of course, I did have Dilaudid for the pain this time, but it didn't work that well so I'm not giving it all the credit for my improvement. I think I'll have enough strength tomorrow morning to take my kids to school, then come home and collapse. I'm so glad I get a break this week. I plan to do as much as possible before I have to have chemo again.
Good luck everyone and I hope we can all hang in there and have good results. I'll get my PET/CT scan results a week from Tuesday, as well as tumor marker numbers. I hope I get some decent news.
Cynthia
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How often do you guys get Navelbine? My mother started Navelbine three weeks ago. When I asked the dr what her schedule would be lik, he said once a week and will determine how many she can stand before she needs a break? Is that normal? So she's had three so far and I guess next week we will find out if she gets it again.
Also, how soon do you know if it's working!? How soon do you see signs that it is. our biggest concern right now is that her calcium is still elevated. she is at 12.3 today. She's been bouncing around the 11's & 12's since we started the Navelbine. And we have all our hopes that Navelbine kicks in and brings her calcium back to Normal levels. How did it work for you all?0 -
I'm new to Navelbine but I get it for 2 weeks, then a week off. Some women on here say they get it for 3 weeks with a week off. I know it can lower white counts and your mom might need Neupogen to help rebuild them. I do not know how long it takes to work, if it's going to. I get my tumor marker done this week and get the results next week to see if the Navelbine is working.
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@petjunkie
Oh, absolutely you are not alone! I have now been to the ER twice with the jaw pain. Ultimately, my onc does not believe it is Navelbine related. The ER attending said he thinks I am grinding my teeth when I sleep. I bought a mouth guard and will see what I see. Interestingly, he was a returned veteran and made the analogy that he often saw this in his patients in Iraq who ground their teeth due to anxiety about being constantly shot at. Sometimes it does feel like my life is like that, always waiting for the next recurrance.......the hydro does not do much, it seems the advil does more, so a good anti inflamatory might help you. Unfortunately I can't take much of it cause I've had severe reflux since my 20s....even had a surgery for it. Oh well. Seeing the dentist tomorrow.
@ monroy01
My understanding is the standard schedule for Navelbine for BC is once a week, two weeks on, one week off. Having said that, there really is no standard that any doc has to follow, other than to prevent overdose and ensure best quality of life. Quality of life is the whole point. So, if it becomes too much for your mom, they can back off.
As far as knowing when it is working, no standard there either. Her onc will decide when to follow up with a PET scan (or perhaps tumor markers if she has them..I don't). Usually they don't rescan for at least two or three months, depending on how you are feeling and any side effects or new problems. Sometimes they wait even longer. Every doctor has their own habits. But, if your mom is nervous, she can always discuss this with her onc and ask for a scan earlier if she does not want to wait beyond two or three months, but I think you need at least that amount of time to see any appreciable effect. When the insurance company will approve the next scan also enters into the equation.
Bottom line, no two oncologists practice the same way and dose frequency can vary wildely so just because one person has one schedule and your mom does not mean anything. You can always go to the drug manufacturer webpage to get information on recommended doses. However, I believe Navelbine for BC is considered an "off label" use, meaning it was not primarily designed to treat BC, but has been used and approved for BC use by the FDA.
The best way to advocate for your mom and understand what is going on is to prepare your questions in writing as notes before each doctor appointment and write the answers down. It is hard to remember everything and a list helps you get all your questions in during the appointment. Also, ask for copies of her lab reports and scan reports and start a binder. This you can take to the ER if necessary, or to other docs. It has been my experience that often these documents are not copied to all my docs the way they are supposed to be. You can help prevent mistakes and oversights be getting organized and taking charge for your mom, as she is probably too tired to do this or may be old school and just accepts whatever the doc says and assumes they are all communicating properly with eachother, which is a rarity. Also, type out a detailed "In Case of Emergency" page for her and put it in her and your wallet with her current meds and a short medical history. This is useful in an emergency (ERs and EMTs are trained to look for these in your wallet if you can't speak). Tape one to the back of her front door too. Bring it when you go to any doc so they can just photocopy it, rather than you writing all that out again and again, it makes life a lot easier on all and ensures less mistakes. Just remember to be religious about keeping it up to date with details about doses. It does not hurt to lay out in a separate section on that page at what time of day she normally takes what meds so if she is admitted to hospital they keep her on her normal schedule, especially with respect to pain meds! Also include a list of all her doctors and their phone numbers, your contact info, and the contact info for her health care proxy. EVERYONE reading this, whether you are sick or not, get a Will, Living Will, Health Care Proxy and Power of Attorney drafted NOW, don't wait for an emergency to arise. It is hard to talk about but even harder if you don't have these docs when you need them. If you can't afford a lawyer, find one who will do it pro bono or look for a health care legal clinic in your area. Don't use those computer programs to do this stuff, talk to a lawyer! Also, for those of you caring for an elderly parent, consult an elder law attorney specifically to help you with the will, and also to ensure your parent's assets are best used and protected if they need nursing home care. Medicaid is the way most peoole pay for nursing home care, but Medicaid makes sure to make you poor before ponying up. But, there are ways to protect your parents assets from this sometimes, if you PLAN AHEAD! Having just lost my dad, I can't tell you how much of a difference it made that he had planned ahead to protect my mom if something happened to him, and let us kniw what his wishes were, so when we had to discontinue life suppport, we knew we were following his wishes.
Back to the binder.....
Whenever mom gets a test, you can get a copy on disc immediatley thereafter at most hospitals or outpatient testing facilities. Put these in her binder to take to doctor visitsin case they need it, if you can. This is not always necessary so if you can't manage it, no worries. Many hospitals are now having patients sign authorizations to allow the electronic sharing of such things, but the actual technology is not yet in place.
Another thing you canbdo is subscribe to this site's monthly e newsletter which includes info on new resrearch. Also, medpage has an e news service that has a lot of BC info. Knowledge is power, which helps battle the sense of helplesness you might be feeling.
Phew...that's it for now. I know a lot about Medicare and Medicaid, food stamps and so on so if anyone has any questions feel free to PM me. I'm not a lawye, but going through this I've learned a lot and often counsel other elderly or disabled individuals on such matters. It can all be so confusing!
Hey you Medicare patients....check your med list against the formulary for your part D provider (prescription insurance provider which if you have Original Medicare, is a separate entity which you can change each year) before the DECEMBER 7th deadline to make sure they are all covered. You can do this by calling the 800 Medicare number with a list of your prescription meds and they will help you choose the right provider. There is also an online service on the Medicare website you can use. These Part D companies must cover all drugs on the Medicare formulary but often offer different additions. Don't assume if they covered a non Medicare formulary drug last year that they will this year! They change their formularies! If you have an Advantage Plan (medicare hmo), your prescriptions normally are covered through them by a subcontracted company. It is not a bad idea to check their formulary, as well as review any changes to the plan you had last year, to make sure they didn't drop or limit any covered services or change premium costs. You have until DECEMBER 7th to change plans or you are stuck!
Attention Medicare/Medicaid subscribers (dual eligibles) in New York State:
Our benificent Governor pushed changes to coverage through the state senate this year that may effect your coverage any time between now and 2014. Some of these are good and have to do with aligning NYS Medicaid with "Obama Care" rules. However, if you are a dual eligible and receive home care assistance through Medicaid and you have Original Medicare and Medicaid, you will be forced to choose a Managed Care HMO type plan offered by NYS, effective date determined by what county you live in. Individuals in NYC are already being enrolled. IF YOU DONT RESPOND TO THE NOTICE YOU GET FROM MEDICAID, THEY WILL AUTO ENROLL YOU IN ONE OF THESE MANAGED LONG TERM CARE PROGRAMS. YOU MAY NOT LIKE WHAT YOU GET! PAY ATTENTION TO YOUR MAIL!
For more information, google NYS Medicaid Reform Team (MRT) or go to www.Selfhelp.org which should have a link to the Western Law Center's excellent website on all things Medicaid. Or, check the NYS Medicaid website!
Ok really done now. Hope this info helps!
Snooch0 -
Smooch, wow, thanks! Lots of good info there!
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Snooch! thank you soooo much for all that info!!! it is very helpful!
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Glad I could help. I know it sounds daunting but if you start and stay organized your mom's care will be better and you will not feel lost all the time! My prayers for her and you. Don't forget to take care of you as well.....you are no good to her if you get sick too! Try to put together a support team of several people she can rely on so you do not have to do it all yourself, and you can take a time out once and a while!
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Hey monroy01
I read your mom's history. I too have widespread bone mets. I am wondering if your mom is experiencing increased pain at the sites of her mets since starting Navelbine? I have. The nurse warned me I might and said it couod be an indicator that the medicine was working..but boy this week was tough!
Anyone else respond this way?
Also, my jaw pain is still there....saw the dentist and got a bite adjuastment which did little to help. He did not do a panoramic xray since I had a CT done in the ER. I dropped off the disk for him to check out this weekend. He said it could also me TMJ as a result of stress. Said the muscles around my jawbone were tight and my jaw was clicking some.
Who, me....stressed?
What I don't get then, is why muscle relaxers don't help.
Anyone have any new insights on navelbine related jaw pain? I checked the manufacturers webpage which DOES indicate 5% of patients studied reported jaw pain. I don't get why my onc and other docs say when they look it up jaw pain is not referenced!
I'm using beaucoup advil and more hydrocodone to keep that and the other bone pain under control but I can't continue with the advil much longer as it is making my GERD worse, as anticipated. It really only takes the edge off anyway...
Any suggestions?
Snooch0 -
Snooch - Navelbine has caused me a lot of pain. The intensity was worse the first cycle, but it only lasted a few days. The second cycle wasn't as painful, but it lasted more than a week. I had my infusion the Wed before last and today was the first day I didn't require pain meds. I'm wondering if, as your nurse mentioned, it could be attacking my mets because it doesn't feel like typical bone pain. I've been taking a lot of advil and didn't realize that's why my reflux could be worse. I also took Dilaudid but it didn't help very much.
I'm sorry you're having so much pain too. I'm not having jaw pain, but I've had it in the past for other reasons and I really feel for you. I hope the pain means it's working and it improves as we get more txs. Between the pan and fatigue I haven't had much of a life since I started Navelbine. I find out on Tues if my tumor marker is gong down and then we'll go from there.
Cynthia
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Oh wow, I'm not feeling alone now.......
My first Navelbine on a Tuesday went fine I thought until a few days later the pain started in my belly and upper back. I had Xgeva the same day and blamed it for the pain. Went for second Navelbine a week later and Onc became concerned about the pain (I never complain) and my labs are horrible. She canceled my treatment and admitted me to hospital overnight for scans and pain management. Scans were ok. While at the hospital I recieved neupogen shots, so by Friday I had my second Navelbine. So far so good. I have vicoden for pain management, which i finally stopped today and prednisone for I don't know what, for a few more days. I see her again on Friday to determine next steps....... I hope we find a schedule that will work.... I really want to give this chemo a try
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I saw my onc today and based on my PET scan, he feels the pain I'm feeling is from the chemo attacking my mets. I have extensive mets in my ribs now (oh, joy) and that's where most of the pain was centered. Since the Dilaudid didn't help much with the pain, he told me to take some Decadron each day and it will help lessen the inflamation and pain. I'm glad since it will also help counter the fatigue and maybe increase my appetite.
I was relieved to learn that my mets are still just in my bones, but going from 3 small mets to extensive mets in two years with treatment is disconcerting, to say the least. My mets are busy little bees, the little shits. I wonder if the Aredia is making any difference at all?
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I'm just about to start this one after slight progression on skin mets while on Xeloda. Will catch up with posts later on when have more time.
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Just been reading up on the other posts. My onc didn't mention jaw pain so will definitely look out for that. Not sure what dose I'll be on yet. She talked about starting me off on a low dose to see how my blood counts are and will increase it if they're OK. Bit worried about that as have had a lot of problems with WBC on previous chemos. I'll be on tablet instead of IV as veins are crap since I was on FEC and should be 2 weeks on 1 week off.
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Welcome, Gail. I haven't had any issue with lowered white count, much to my surprise, but my red count was low enough before my last tx that I had to have a Procrit shot. I have another tx Tues. so I'll see if it's any better. I only have slight jaw pain every now and then - I mostly have leg pain and fatigue. It seems to be a pretty easy chemo for me. It's nice that you get to take it in pill form. I don't know if it's available that way in the U.S.
I hope you tolerate it well and get good results.
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My oncologist is making noises about Navelbine for me. My cancer is out of control right now and I don't have a port. So will have to get my port placed. But I haven't done standard chemo much. With the mets, I have used mostly natural or alternative methods. So May 2010 I used taxotere and the first time around, it was a breeze! But last year when I tried to use it again, it tanked me. I was already low from a little IPT journey I took that exposed me to 9 different chemo drugs in 3 months, so I am desperately hoping that wasn't enough to give me resistance.
Anyway, Navelbine is what he is considering. I see reflux is a big SE with it. I don't know if y'all have done much research on what you're taking for that. Prilosec is a proton pump inhibitor (PPI). There are SERIOUS baddies associated with PPIs. Sometimes it is the only thing that will work for me, but if you can find an acid reducer, instead of a PPI, that will give you relief, it is much better for you. I think I recently read that PPIs can even lead to C Diff, but I can't swear to that. In any case, it's ugly especially when we already have so damn many other problems!
xxoo
Melissa
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Melissa,
I get reflux from the Navelbine during the infusion and for about a day after. After that, it just depends, but it's not nearly as bad as Xeloda was for reflux. Xeloda gave it to me 24/7. It was horrid. I take Zantac for it now since I learned that you can't really overdose on it. When necessary, I take it multiple times a day and use Tums along with it for instant relief. I consider the muscle pain side effect a much bigger problem for me.
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Cymthia - I hadn't heard of Procrit before. My unit just seems to do blood transfusions, but although red cells a bit low haven't had to go that far yet. I was hoping to escape from the acid reflux after being on Xeloda, but looks like I'll have to keep taking the Lansoprazole for that one too.
Melissa - what does IPT stand for? 9 chemos in 3 months sounds pretty heavy duty.
I was hoping to start on Friday as I already had chemo appt set up for Xeloda, but they can't fit me in next Friday for day 8 tablets so will have to wait a bit longer. Hoping they can set me up next week.
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I've had 3 more Navelbine infusions since my last post. It seems to be working, markers are going down. We also, after several tests, determined that an ulcer was causing my stomach pain. My meds were reviewed and changed, Nexium added and for now it seems the pain is gone! My onc and I both agreed that I can't tolerate the 3 weeks on, 1 week off, so I'll be doing 2 on, 1 off.
Good luck everybody!
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Runnr - great news on the TMs. My unit does 2 on 1 off as standard. Will be starting first dose tomorrow.
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Had to have blood tests redone yesterday for chemo but was good to go, ended up being stuck for 3.5 hours in chemo ward as pharmacy then took over 2 hours to dispense the tablets once I was cleared. On the plus side, I'm feeling pretty good today, but might be steroids I took in chemo unit yesterday haven't worn off yet.
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I had 2 tx of Navelbine/Herceptin & tx #3 was Navel/Herc/Perjeta last Friday. The 3 will be my cocktail every week, as long as it works...forever, I hope! I'm interested to see some have 2 weeks on, 1 week off...that would be wonderful, but I'm a newbie so I think they'll wait until they see my first scan at 6 weeks. Fatigue seems to be my main se. I've had a couple of migraines, minus the headache, just the prisms. It's relieved with ibuprophen and sleep. I also have a bit of queasy stomach...nothing too serious, have taken a compazine with each tx. I did start with senokot, thinking the tummy thing may have been constipation. Perjeta is supposed to cause diarrhea so I'm hoping at some point they'll counteract each other and all will be fine. My onc wanted me on Xeloda as well but my insurance denied it so that's when perjeta was added. She starts with Navelbine because she said it's her first go-to drug, is well tolerated and doesn't make you look like a cancer patient. I hope it also means it works! Good night to all...one thing chemo did to me was make me awake in the middle of the night!
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RonnieKay - hope your combo works well for you. My last chemo was Xeloda before starting Navelbine and it only kept me stable for a few months, so hoping to get longer out of this one. I think most oncs like to go with Xeloda and/or Navelbine so we can keep our hair longer and are going more for quality of life than a cure when you are stage 4. Are you on steroids as well? I get them for anti-nausea on chemo day and they keep me going for a couple of days after.
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RonnieKay - Oh, my gosh do you mean you're having silent migraines? I think that's what they're called. I see an aura, then about an hour later my head sometimes starts throbbing but it doesn't hurt. I've had three so far and the auras are really freaky. I've never experienced this before and I have been kind of nervous about it. I'm so relieved to know I'm not the only one. I couldn't find any info relating them to Navelbine.
I do get reflux from it and I take Zantac for that. I also have the fatigue which is probably the worst side effect so far.
Good luck and I hope you get good results.
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Oh Cynthia, I just am so thankful that I had a couple of these silent migraines way before bc entered my life! The dr at that time said they're common and that I was lucky that I didn't have the headaches. I see the onc on Wed and will bring it up to her but really, they went away so quickly with the ibupro & sleep. My fatigue is also the worst...haven't had the reflux yet...as I knock on my wooden coffee table! They gave me meds for it
I do have some so-so/great news: my wbc was too low to get navelbine last Thurs so I just had herceptin (perjeta's every 3 weeks). BUT...my liver enzymes were NORMAL...so that was a big hip hip hooray! Which made me even more sad that I couldn't get chemo...cause obviously, it's working. I had a neulasta shot which is giving me some rib/hip fits this weekend but hope it means counts will be high enough for Vanilla Bean (my pet name for navel). Gail...before treatment I take zofran and tylenol pills. I had gotten benadyl as well, but last time my body recognized herceptin again so didn't have it. So no steroids. I did get them last time I had chemo in 09-cytoxan, taxotere & herceptin...but not this time through. I sure could use the boost of energy! Although I remember last time they kept me awake all hours of the night. Of course, sometimes I still do that without the steroids. My onc gave me Ambien...but just reading all the crap it can lead to...I just say more prayers
Love to all my Vanilla Bean Sisters!
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RonnieKay - love the Vanilla Bean nickname, I think I'll have to steal it. Hope the neulasta jabs work and chemo goes ahead this week. I had them on Taxotere and it's the only chemo I never had WBC problems with, but my unit doesn't dish them out for most chemos as too expensive.
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