Navigating Navelbine
Comments
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RonnieKay....what a hard decision. I am also thinking the end of the year will be retirement time for me.
Robin
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I have a question about hair loss with Navelbine. I know that many of you say your hair thinned, then stopped after awhile, but it was early on in your treatment. I've been on it since November, then onc added Xeloda (which I was on before Navelbine but it quit working) in Feb. I didn't have any hair issues with either alone, but now my hair started thinning about a week ago. First, it was just some thinning in the back that only my stylist noticed. Then, a few days later, I woke up to find part of one eyebrow missing. Later that day, I noticed a "shower" of hair when I happened to touch my head. That was two days ago. Now, I have noticeable thinning in the front, and overall thinner hair. There hasn't been a huge amount falling out like I had with my original tx of AC, but I wonder if the end result will be the same? If so, then I would rather shave my head, but I don't want to do that if this is temporary and I can cover it with hats or a wig. Strangely enough, I'm having a much harder time with this unexpected "surprise", than I did when I knew it was coming after the AC.
Cynthia
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Hi Cynthia - not sure I can help you as I was on Xeloda and Navelbine consecutively and hair has been OK. It's pretty fine but always has been although I get away with it as there's a lot of it. Sounds like it's the combination that is causing the problem. It's probably worth waiting a bit to see if it settles. My eyebrows haven't grown back properly since I finished FEC-T a year ago so that might be due to Xeloda and Navelbine.
Out of interest, what was the reasoning behind adding Xeloda if it had stopped working for you before. Just wondering if it will be possible for me to try it again in future as it had developed resistance for me too.
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Yeah...I would like to know WHY this combination ...
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My onc says that they sometimes work better together than separately. So, after 2 cycles of Xeloda (one wk on, one wk off) along with one cycle of Navelbine (2 wks on, 1 wk off), my CEA dropped by more than 100. I see my onc again tomorrow and I'll find out if the combo is still working.
My hair shedding seems to have slowed down and I'm wondering if it's because I'm on my week off Xeloda. I guess I'll see. I've been trying on different hats and trying to get used to wearing one since I've never been much of a hat person. I managed to wear one most of today and it wasn't too bad. This may sound weird, but I just want to make it through my kids' school year with hair so I just have to make it 7 more weeks.
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I have been on Navelbine for the past 20 months, right after Taxol. I have really crappy hair! It is thin and I still lose alot of it during the 2 infusion weeks. It then stops falling out during my break week, but the break is not long enough to make up for the amount that I have lost. Also, my eyebrows and eyelashes are very thin. I also had thinning hair when I was on Xeloda.
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Cynthia - good luck with onc appt.
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Zowie Cynthia...I had just wondered if my mascara was doing funny things to me because it seemed to not be going on "evenly." I've always had a good number of eyelashes (except for losing them during first chemo bout in 09), but they're definitely thinning, along w/my eyebrows (which have always been sparse). I don't think I'm losing head hair...none on the shower floor, but my hair's thick. My onc likes to start on navelbine w/recurrence, since she said, "It works & doesn't make you look like a cancer patient." The thing I was most worried about was losing my hair, so I understand your thoughts! I considered giving my wigs away, but I'm keeping them after all! Good luck Cynthia! My onc really wanted to add xeloda to navelbine but insurance nixed it. Glad to hear about your markers! I go in today for my 4 week update...praying for good news! Hope everyone had a blessed Easter!
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Gail5 - Thanks! I did in fact get good news today...the combo is still working. My CEA dropped from 411 to 333. I'm amazed that two chemos that quit working individually are effective again when put together. I had no idea it was possible.
Lotusblossom - I've heard that both X and N can cause hair loss, but I was lucky that I had just a bit of eyebrow thinning on each of them alone. You've had a great run with Navelbine. It only worked for me (alone) about 3 months. It's too bad it's effecting your hair so much.
RonnieKay - My eyelashes seem to be taking the brunt of the hair loss. It's very disconcerting, but I keep telling myself that my glasses will hide a lot of it and it'll be less obvious than my eyebrows or head. Good luck with your appointment today. I hope you get good news!
Is anyone else dealing with low red blood cell counts? I had to have my second blood transfusion a week ago. It was my second one in 7 weeks. The Procrit shots aren't working. My white blood count drops but recovers on my breaks, but not my red blood cells. I suppose if I had to choose, anemia is preferable to neutropenia since I have little children. They both had the flu last week, especially my son (who didn't get the flu shot) and I was so afraid of catching it from him. So far I seem okay.
The combo of the chemos together also causes me to become dehydrated. I was having to come in a couple of times a week for hydration during the first cycle, but for the second cycle they gave me extra hydration with chemo and it seemed to keep the dehydration away until a couple of days ago. We're trying the extra hydration again today, so hope it'll do the trick.
Good luck everyone!!!
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Yeah Cynthia! Glad to hear your numbers are improving! My white counts go down on the 4th week, so never get navelbine that week, just herceptin & neulasta, but my red cells have stayed pretty steady. My onc said that if navelbine quits working, she's sure that insurance will let her add xeloda. She really likes to do the two-drug combo. How old are your kids? I pray for all of us to live long lives while surviving this crap...but for our young mothers, there's an extra dose of "Please, dear Lord".
Had a very good onc appt yesterday. She said she's never seen anyone's tests improve as quickly as mine have. All markers are in the normal range so she's not doing scans for a while longer, thinking that the liver tumors are still shrinking. I'm just hoping for this to work for a very long time. She told me when I was diagnosed in Dec that since my June scans were normal, it was obvious the tumors were quick growing, which sometimes means they're quick to shrink. Ever hopeful! I was ecstatic that she said she thought I could take a break for a couple weeks from chemo (in a few months) so that I can get my stomach bulge fixed.
I also asked the onc about hair loss & she said she's not had anyone that's experienced it w/navelbine, except for some that colored their hair while on it. I colored my hair 3 weeks ago...UGH!!! Still have my hair, but she said it's not a good thing to keep up, since all the chemicals (hair & chemo) can be too much & it could fall out. I hate my grey hair. Guess I would cut it really short...who knows.
Anyhoo...thinking of you all! Treatment tomorrow, but it's week 4 so I'm sure my wbc is low, feeling kinda wimpy!
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Hey Navelbine gals,
Just checking in to say hello. I'm still on Navelbine and am holding steady, booked my appointments out through the end of June, which I realized will be a year since I started. It is still going well, no complaints aside from weekly trips to the infusion center, 3 weeks on, 1 week off.
Re blood counts - my white counts really take a hit, I need three neupogen shots a week to keep them high enough to receive chemo, then I get neulasta on week 3 to carry me through. My red counts, though, have been pretty steady, almost within normal range. It is always so interesting to me that treatments cause different effects in different people.
Take care fellow vanilla beans. Hope you are all doing well.
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Here too...... Doing very well on vanilla bean.
Only my liver enzymes where high, scared the hell of me. Last week on my infusion day wanted to ask a doc, but got only the pharmacist to talk too. She reasured me thats ok, could be from my Tylenol, or the cold I had for weeks, fatty diet maybe ?
I am cutting out all yogursts, butter etc...... need to shed anyhow 3-5 pounds. Since my dx I stopped my running, but went last week on it again. Love it !! I thought if I am in dying stage I could not run that fast and long......
My bilirubine is in normal range, thats good too. ( Thats the one that makes you look yellow if not good.)
TM are last week 21.0, normal too.
Hope that navalbine will work for all of us you amazing Ladies..........
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Hi ladies.
Had treatment 3 0f 3 yesterday....so next week i am off! Looking forward to it. My hair is still shedding...not horribly, but it's so fine to begin with. I have a perm tomorrow...I may regret this!
Hugs!
Robin
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RonnieKay - It's so awesome that you had such a great response. How very exciting! And, maybe even a chemo break at some point? What a wonderful thing. And, I'm glad to hear that you could combine the Xeloda when necessary.
My children are 11 (girl) and almost 8 (boy). I'm planning to do everything I can to be around as long as possible, especially for my sensitive, mommy loving boy.
I'm glad so many of you are doing well on Navy Bean. I'm on a 2 week on, 1 week off schedule. I can only imagine what my red cell count would do if I had to do it 3 weeks in a row. This last transfusion only brought my hemoglobin up to the 10's so that's a bit discouraging. I may be getting another transfusion sooner than I did last time. Glad at least that my white count is hanging in there. I hate the back spasms the neupogen shots give me.
Good luck everyone!
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Cynthia - great news on your response to the combo. I had issues with red blood counts on Xeloda, although was never anaemic enough to need a blood transfusion and I don't think we get Procrit here. It's come back up fine on Navelbine.
RonnieKay - also great news on the shrinking tumours. I've been considering colouring my hair but just highlights so could maybe get away with that.
Nancy - that's a good run you've had there. Hope it continues.
Robin - good luck with the perm. Hope it works out.
I have CT scan on Monday and onc next Friday to see how things are going. Skin mets are growing again, so not convinced Vanilla Bean is working out for me. Was so hoping to get a few months at least out of it.
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Gail - best of luck on your scans. Will be thinking of you.
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Gail
Waiting quietly with you for your results on Friday.
Big Hug!
Robin
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Hello all,
I haven't checked in here for a few months (changed my username today for privacy concerns) I started Navelbine only a few weeks after losing my dad to a massive stroke in October. My life has been overwhelmed with helping my poor mom adjust ever since. Things are quieting down though, and I actually have some time to start thinking about myself again.
I'm still on the Navelbine with two good scans behind me. The bone pain flare ups have settled down, the jaw pain remains, but not nearly as bad. I wanted to run past you guys a question....
When I started Xeloda, just prior to using Navelbine, I began getting a constant runny nose and a raging case of watery eyes, the former being diagnosed ultimately as severe blepheritis (dry eye). These side effects persist on the Navelbine. The opthamologis finally gave me something that has helped my eyes (Asazite Eye drops). BUT, the runny nose is still just a real pain. The ENT and I have run through all the pills (antihistamines and so on). We've tried nasal sprays of all sorts with no luck. I had a blood test done for allergies, which only revealed a very low level reaction to a fairly common household mold, and dust. So, I am sort of at a loss as to what to do, other than submitting to a battery of allergy tests (you know, the skin prick tests). I do notice that the nose running increases with any kind of increased movement, inside or outside. We did try a nasal spray that was supposed to help if the runny nose was being caused by changes in the dilation of the blood vessels in my nose/sinuses, with no luck.
Any suggestions before I wander down the path of allergy testing? I've had them before, pre cancer. I didn't find the results very helpful, in fact I was told I was allergic to all sorts of things that I eliminated from my diet that time, which were never offending foods after all.
Thanks for any suggestions.
Dragon Girl0 -
OK, so I messed up somehow. This is in response to someone who posted earlier about having chest pain and heat burn after Navelbine treatment. (Nanych?) I lost the OP now! Anyway, you know who you are!
Hey,
Just to make you feel validated, I get the chest pain and heartburn type sensation right after my Navelbine dose too. I tried having a dose of pepcid added to the IV, but that didn't seem to help. I find the sensation goes away by the next morning (although I do suffer from persistent acid reflux problems which I had even prior to being diagnosed with BC). To be truthful, I'm not convinced the symptoms ARE heartburn or acid related at all, because if the way they go away. Having struggled with acid reflux, and even having had a surgery for it in 1999, it just doesn't follow any pattern I've experienced before. One guess I got from a nurse was that it was referred pain from my spinal mets (I have tumors all over my spine.) I would agree but the heartburn type pain just doesn't seem to mesh with that, it isn't the same as the chest pain which may well come from the mets.
What I have found that helps....I use Lidoderm patches for my spinal pain. I put one on when I get home, just at the spot that my diagphram muscles connect to the spine. It seems to help. Consequently, it could be the bone mets flaring in reaction to the Navelbine, or my pet theory which is that my diagphram is spasming causing tightness in the chest and muscles around the esophageal juncture to my stomach. Do you get nauseaus? I do, a bit. Zofran does not help much though, and as I said Iam usually OK the next day. Just wondering if you have spinal mets, as you are complaining of the same problem, of you don't that would validate, my theory about the spams a little.
Thanks
Dragon Girl0 -
Anyone on this topic ever use Avastin? I had it just after DX in 2005 (@ stage IV before any other "chemo") just when the first positive study was published (it has since been taken off the FDA's approved drug list for BC). It gave me a five year remission (which is I believe why I have lasted so long)! Just curious....apparently there's a small few of us for whom it worked very well. I would be interested in talking to anyone else who used it (with any result). I'm participating in the 23 and Me study.
Dragon Girl0 -
Dragon Girl - sorry to hear about your Dad. That must have been tough to deal with on top of everything else.
I also have blepheritis but have had it for years pre-BC and I just need to clean eyelids with a solution of baby shampoo each day using a cotton bud to keep on top of it. I've had a bit of a runny nose on all my chemos, but doesn't sound as bad as you and sorry I don't have any solutions.
I had acid reflux on Xeloda but am fine now on Navelbine.
I've not been on Avastin. It's been rejected by the Scottish Medicines Consortium so wouldn't be available to me here.
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Hey Dragongirl,
YES, it was me who has the pain immediately post infusion that lasts for several hours. Thank you so much for your post and suggestions. I will ask my onc about this. I agree that I don't think it is heartburn/reflux because of how the pain goes away. I eat a bunch of Tums, crackers, Mylanta, and try to distract myself with a funny movie or whatever, but basically I just suffer with it for 3 - 4 hours every week. By the time I eat dinner, I'm usually much better. Your description of "spasm" is a good way to describe the pain, right in my chest. I don't have any trouble with nausea, but I get a zofran and dex as premeds. I also get karafate as a premed, which is an old-school heartburn med, but I don't think it does anything.
Also, I was on Avastin and did amazingly well on it and am participating in the 23 and Me study. I went to Wash DC to testify before the FDA to keep Avastin available, but we all know how that turned out. Like you, I'm convinced Avastin has been part of the reason I've done so well. Hubby and I have talked that if I get to the point where I'm in hot water, maybe we would pay out of pocket for it. I hoped I'd be grandfathered in for insurance to pay, but it doesn't seem like that is likely.
Thanks again for your post!
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NancyH & Dragongirl - I get chest pains during Navelbine, but it's usually gone after about an hour. I think it's reflux, but who knows. I take a Zantac before chemo or during if I forgot. I also eat Tums. I don't recline during the infusion because it makes the pain much worse. It doesn't feel like the typical reflux I get. I guess it's more painful than burning. I'm assuming it's reflux because I think it's listed as one of the side effects. I'm sorry you're both having such pain from it.
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Gail,
Thank you so much for your condolences. We were pretty tight and he was a good, good man.
I didn't tell him my cancer came back. I'm glad he never knew and did not have to worry about me as much, although of course it was always on his mind. My mom still does not know. It's better that way, she could not handle that before, and it would be worse now. I am praying for the Navelbine to keep working because I still have my hair and I can cover that I am on chemo. My most wonderful sister helps me with whatever I need, and also helps mom and helped dad, so I am not alone. But, managing my disease and taking care of dad was really hard, and I miss him more than I can explain. I was diagnosed at 39, I'm 47 now, it's been a long hard road but I did have five fairly good years of remission from the Avastin ( my belief) so I feel very lucky. It seems it works well for a very small percentage of us. Yes, I know that the European countries have pretty much followed suit with banning the Avastin for BC based on the studies available. I am hoping that the study nancyh and I are participating in will reveal why it works for some, and not for others. I too got terrible reflux on Xeloda and truth be told was not sorry to say goodbye to that one between the reflux and the hand foot syndrome, it was becoming hardly worth it. The Navelbine is much easier to tolerate except for that chest pain stuff. As I said, for those having the same problem, I think the heartburn type feeling may be part bone pain or part thoracic/diagphramatic muscle spasm. It just does not respond to anything that would normally help with heartburn. My other theory is that it might be too much bile from the gall bladder being secreted right after the navelbine dose is given. Having had many GI problems for years, I know a bit about the anatomy and symptoms. Yes it feels like heartburn sort of, but not the same.
I think the chest pain part is separate, and is definately esophageal spasm from acid reflux. I had severe reflux even before I had cancer. I had a surgery for that called a Nissan Fundoplication, which essentially tightened my esophageal sphincter so less acid would reflux into my esophagus and mouth. At that time, prior to that surgery, I did get horrible chest pains from the reflux, which I was told was from my esophagus spasming when it came into contact with too much acid. The surgery did resolve the chest pain for many years. However, the surgery was only expected to last 10 years, and the wrap (as they call it) failed some years ago, as I had the surgery in my late twenties. So, I think the chest pain component is probably esophageal spasms from the acid again. It feels the same. I find a warm moist heat compress often helps with that part of the post chemo chest pain as it reduces esophageal spasms (always has for me). Also, a little hydrocodone, which I have for my bone mets, helps too. I think it essentially turns off the pain receptors in my esophogus preventing the spasms from continuing. However, one has to be careful that the hydrocodone itself does not upset the stomach, or the result is nulled.
The pain right below the sternum which radiates too (or from) my back, which mimics heartburn, is definitely a different story though. None of my anti reflux tricks seems to help that, and I know them all. That is why I think that pain is a different animal, perhaps caused by thoracic muscle or diagphramatic spasms. That just has to go away on it's own, although the moist heat does seem to help a bit (hence my spasm theory). Who knows...just my thinking on it all. I have some background in medicine and anatomy, just enough to know some things and drive doctors crazy. My oncologist seems to respect my knowledge and ability to think through this stuff so I can't be completely daft. I think my next move, assuming my PET on the 25th comes out OK, is to try a muscle relaxant after I get home from my next chemo. I am after all a walking pharmacy, so I have some on hand and could give it a whirl. (Yes I will tell my oncologist.) I'll let you guys know if I get any results.
Nancyh, so cool to meet someone else who had Avastin and is in the study! I wonder, did you know that although private insurance companies won't pay for Avastin, Medicare still will? That is, however, only if you are a chemo virgin as all the studies have been done on women who never had chemo before. If you had gotten yourself set up as permanently disabled with Social Security, and had waited the two years for Medicare to kick in, you could have had Avastin again as Medicare would have considered your going back on it as being a continuation of your first line chemo (Avastin). IF IF IF. I had to choose when the hormone therapy all failed between trying Avastin again (if Medicare would let it fly, which my oncologist thought they might) and Xeloda. Damn that was a hard one and I'll always wonder about the choice I made. I just decided that I was a lot "healthier" and stronger on my first go round with Avastin, but worried that the second time it might cause some irreversible heart damage or some other problem. If that happened, then I would be in a position of being more disabled and not be able to reap the benefits of any newer, more firmly proven to be useful treatments down the line, so I decided against it. My oncologist here had seen some pretty bad reactions to it. My oncologist/advisor at Sloan Kettering said he thought I should give it a whirl or I would always wonder. Well, he was right about THAT, but at the time I was not prepared to take the risk, and honestly did not want to reveal my situation (by going bald from the taxol) to my loved ones under the circumstances. Maybe I was being stupid, maybe not. It's all voo doo anyway!
OK so I've yammered on here way too long and wonder if I am still making sense! I hate my tablet because scrolling back up to edit in the text box can be a perilous process, so forgive if I repeated myself!
It's nice to have people to talk with right now though, thanks you guys. I hope maybe some of my reflux tips/info is of some benefit to you.
Whoever said they were taking Karafat.......REALLY! Wow, that is seriously old school. Your oncologist must be no spring chicken.....but I suppose whatever one can think of is worth trying. Another thing I just thought of....George's Aloe Versa...it's a clear drink with aloe versa, but does not taste nasty the way most regular aloe versa juice does. It will aid in digestion (speeds gastric motility) and soothe/heal any acid induced erosions in the esophagus and stomach. Of course run it by your doc first, but I found it useful in the old days, and may try it again.
Thanks to all, and have a great week! It's my week off chemo...yipee!0 -
Dragongirl - I found your post about reflux very interesting. I have no doubt you understand what your body is doing more than anyone else. I know my body reacts in less common ways to certain stimuli and it can take me awhile to figure out what is going on. My heart especially doesn't like the acid reflux, followed closely by my lungs (asthma). It's good to know about the warm moist heat for the pain just in case it doesn't go away as quckly as it usually does. I'm used to the reflux taking awhile to resolve even with the Tums and Zantac, but it could be a spasm instead. I have an infusion on Tues so I plan to pay closer attention. Thanks for sharing your experience and thoughts on the issue.
Gail5 - Good luck with your CT scan tomorrow! I hope all goes well and you end up with good results!
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Cynthia,
If not verbos, but thanks. If the pain gets worse when you recline, that would go along with a reflux diagnosis (reclining allows acid to travel further up your esophagus). If your oncogolist would allow, Gaviscon is a great anti reflux med over the counter. Rather than absorb the acid (like tums) or reduce the volume of acid secreted (zantac) it forms a foam barrier between the top of your stomach and your esophagus, preventing the reflux upward. I have found that helpful in the past as well, but do check with your doc first as it has some different chemical components than tums or zantac.
Your doc may poo poo the esophageal spasm I discussed. Any GI doc would know about this, but I have found some non GI docs don't know....so, you could have him look it up. It's for real (the Head of UCLA GI Group and my former surgeon from Cedars Sinai are my sources)! I see you are from CA. I'm a former LA resident myself. I want to slap myself for moving back to the East Coast every winter! The practice of medicine out there is far more evolved than here as well!
Good luck on Tuesday.
DG0 -
Gail - thinking of you with your scan today.
Dragongirl, - I'm so sorry about your dad and for how tough it has been taking care of your mom. My heart goes out to you.
Regarding Medicare coverage for Avastin, I will have to check into this. I'm actually on Medicare now as my secondary insurance because I applied for social security disability when I got my mets dx. I took a year off work while I was on Abraxane/Avastin, eventually switched to Femara and went back to work. Now, even though I'm back to work and not receiving SS disability benefits, I do have Medicare coverage. I pay the premiums for part B out of pocket, so it is pretty much a break-even thing. My understanding was that Medicare specifically will not pay for Avastin off label and the commercial insurances have just been following their lead. Of course, I'm also not a chemo virgin, but if they could somehow consider it a continuation of my prior treatment, that would be great. I stopped taking Abraxane/Avastin before it stopped working because we wanted to "save" it for a future time. Little did we know it wouldn't be available. Anyway, I appreciate your info and will follow up.
Regarding the chest pain, I'm going to try and experiment with treatment this week and take a tramadol. The issue, whatever the cause, is pain, so maybe taking a pain killer will help. I'll let you know.
Thanks, gals.
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Dragongirl - Thanks for the info on Gaviscon. I had no idea it works differently. It'll be worth a try, even for just regular reflux. I have to take Zantac a few times a day to get results so maybe Gaviscon will work better. I've been paying better attention to the pain I feel during the Navelbine and it may not be reflux. It's much more of a true pain than reflux and less burning. I mentioned it to my infusion nurse and she said she has a patient who had good results with Nexium. She would suffer from the pain for 3 days.
Gail3 - Thinking of you today! Good luck with your scan.
Just wondering if I'm the only one dealing with dehydration? It comes on fast and before I know it I'm a sobbing, sleepy mess. And, at that point, I don't even have the mental clarity to realize I need to call my onc. I really feel for my kids when it happens because the smallest thing will set me off and I'll start crying like it's the end of the world. My onc has no idea why I'm dehydrating because there are no obvious reasons. I would have thought it'd have worked itself off during my week off Navelbine. It's really a pain in the ass.
My infusion nurse wants me to get on an antidepressant so I'll be more on an even keel. I'm relunctant because I'm okay the majority of the time, and meds are expensive. Not to mention the possible side effects. There are never any easy choices.
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Hey Cynthia,
Don't forget to ask your oncologist about using the gaviscon first! Nexium is a good drug, but it is expensive and some insurers may not pay for it. Nexium is just a form of Prilosec (it is a chemical variant), and you can get generic Prilosec for less. Ask your doctor about it if your insurance won't cover Nexium. However, you should understand how it works. It is a proton pump inhibitor. To make it easy, imagine little pumps inside the lining of your stomach that squirt acid into your stomach. Nexium and Prilosec turn off those pumps. It is most effectivewhen used over a long period of time (treatment cycles of 8 weeks are common). Over time your stomach is exposed to less acid, preventing erosions in your stomach and your esophagus lining. It isn't designed really to have an immediate effect the way tums or gavison work, so don't expect immediate results. I take it at a very high dose because of my history of reflux. I can't tell you of it does any good or not for me, but I have had bad problems for many, many years. It may very well help you so give it a shot.
As far as the dehydration goes, I don't know if that is the Navelbine or not. However, I have noticed since I was diagnosed that I am always thirsty, and no, I am not a diabetic. I carry water with me everywhere I go and drink it constantly. To prevent your dehydration, start carrying a water bottle with you and drink, drink, drink. A simple solution to that problem. Some anti depressents can be very helpful with mood swings, which given your circumstances are not a big surprise. But, I would see a psychiatrist rather than have your GP give them to you. You always want someone with the best training using such drugs to help you. This will ensure that your side effects, if any, are noted and managed properly, and you are using the correct drug for your problem. Also, counseling can be a big help, so don't overlook that option. You are under a tremendous amount of pressure and having someone neutral to talk to really helps. You may find you don't even need an anti depressant if you try therapy first, or the two may work well together. Give yourself a break. I know what you feel, as far as the mood swings go. Your kids will be OK, all parents wig out on their kids sometimes, and you are in good company. Kids are very resiliant. You could look into counseling for them, or family therapy you know. What you and your family are going through is hard. If they are old enough to know what is going on with your health, they may find therapy helpful too.
Keep doing what you are doing, taking care of yourself, and asking questions. Your nurse sounds like a good person to bounce things off of, and may be helpful in finding the resources I mentioned above.
Hang in!
DG0 -
Thanks for the info DG. I have taken Nexium before as samples but I couldn't afford it as a rx. It worked well on preventing the reflux and bloating I had with Xeloda the first go round. Fortunately, Zantac works well enough if I take enough of it and I didn't get the bloating with X this time. I will ask about the Gaviscon.
I must be having pathologic dehydration because my infusion nurses tell me there is no way for me to drink enough water to prevent it. Sigh! Something about ingested water taking the long route and not always ending up where it's needed the most. I need it straight into my veins apparently. I got 1 liter of fluid today and I'm going back for more tomorrow (even though I really don't want to). I can tell I'm still dehydrated, although, the urge to sob uncontrollably and take 3 hour naps have subsided. I just waited too long this time to get in there and be topped off and ended up way too low. I knew I was somewhat dehydrated for many days, but when I went over the edge, I got lost in the tears and sleepiness, if that even makes sense, and lost my ability to gauge how dehydrated I was. The solution is to quit being stubborn and go back for hydration weekly at least. Yes, I hate the drive, and the lost time, but it's better than the emotional mess I become.
I'm still debated about the anti-depressant and I like your advice about seeing a professional. I have no idea if my onc is qualified to prescribe and anti-depressant. I think I would trust my gp more since he's already trying to get me on Cymbalta since it helps with pain and neuropathy, too. But, it's one more rx I can't afford. And, I just don't feel like taking something all the time for the few times I'm emotional or sad. Plus, there are so many side effects on some of them. I'll talk to my gp more about different possibilites. And, your're right, counseling would be beneficial but I can't afford it for me (common refrain), my husband wouldn't go, my daughter doesn't seem to need to talk about it much, and my son is his sweet and clueless self for now. When things begin to go south, they will have a school counselor they can see or really at any time if they feel they need it. Kids really can be resilient and I find that comforting. Sometimes, we'll have a horrid morning trying to get ready and out the door for school and I'll lecture them all the way there about how things could have gone better, bla bla bla. Then, I spend the rest of the day wanting to give them hugs, but it's all forgotten when I pick them up. They've moved on. They're used to a mom who lectures her captive audience as punishment.
Thanks again for your suggestions!
Cynthia
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