Navigating Navelbine
Comments
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Thank God for this forum! Where in the world would we be without each other. I haven't had the chest/stomach issues but I'm just so sorry for what many of you are going through. Cynthia...I think your onc would be pretty reliable about anti-depressants that react well w/chemo drugs, probably more so than your gp, but I understand your concern. I told my onc I thought I was depressed and she said, "I can totally understand." I really wanted a sleep aid...but that scared me so I just try to not sleep too much during the day so I can sleep better at night. Of course, your trying to sleep during the day is probably not on the agenda, being a young mom!
Robin...I so wish I would've seen your post about getting a perm before now. My onc came unglued that I'd had my hair colored (foiled and all over color). She said you don't lose hair on navelbine unless you add something else harsh...like dye. I told her my eyelashes were thinning before coloring and she said it normally doesn't do that. WELL...last weekend my hair started exiting. A few strands at a time, and I have a ton of hair, but it's already becoming thinner. UGH. It makes me feel a bit better knowing that others are having the same effect and haven't colored their hair. Just hoping the perm doesn't have the same effect. And...I'm hoping for grow back once the chemicals have subsided.
Waiting for your news Gail...and sad about more mets showing up
Cynthia...so confusing about the red cells...how bout some liver & onions (we had it last night for the first time in about 20 years!). Mam...hope your meds are the reason your enzymes were raised. I know when I was on keflex it made my creatnine count elevate so, maybe. Just glad all other counts were good!Thinking of you all....and wondering about Avastin. I hadn't heard much about it before but if it kept our sisters alive...I'd rally for it too!!!!!
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This friday I start my 3 cycle......
So far no problem, dont even have a port. I just hope my enzymes are better, I had blood work done today. I run 3x a week each time 45min. so far I feel far away from dying......
Hope the liver buggers are soon gone......
To all of you I wish you a great week-end, lots of fun, and hope all those stupid buggers gone soon.
Carol
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Hi Cynthia,
It troubles me that you are finding that you can't afford many of the things you need the most. When I became ill, I lost my job, my income, my savings, pretty much everything. As a result I've become pretty good at finding ways to get the things I need that I can't afford. Granted I've figured out all of the ins and outs of this in NY, and CA would be a different challenge, but maybe I can give you some ideas.
A lot would depend upon your situation....are you working....is your spouse/partner working...what insurance do you have and so on. However, I'd like to help if I can.
As I said, Nexium is a chemical derivative of Prilosec. My first question is, did your doctor apply for you to receive Nexium with a letter of Medical Necessity? Sometimes you can get an insurance carrier to pay for a drug not on their formulary using this route. Prilosec comes in generic form and is not as expensive as Nexium, so you could try that if you have not. Basically, when u take a medicine, it is broken down into other chemicals by your digestive system and metabolism. Nexium is the chemical that is made during the first step of chemical breakdown of Prilosec when you ingest it. It simply has one less chemical reaction that takes place while the drug is delivered to your system. So, it works better for some people whose systems for whatever reason have trouble breaking down Prilosec (make sense)? So, Prilosec may very well work for you (in its generic form, which is called omeprazol I believe).
As far as affording a psychiatrist/ counseling goes....do you live close to a hospital? The federal government sponsors/funds financial assistance programs at almost every hospital in the US. I know you probably don't think you would qualify for this type of assistance, but you would be surprised at how much income they allow. You might try finding a psychiatrist/counselor directly affiliated with a hospital and take advantage of their financial assistance program. This is what I do. This type of program helps me out with provider copays and inpatient deductibles, ER Visit Copays and even dental services, as long as the services are rendered by a provider affiliated directly with the hospital. University Hospitals tend to have a lot of affiliated providers. You should not be shy about asking for help. You paid your taxes over the years to help finance these programs, they are there for you when you need help.
If I knew more about your circumstances, I might be able to provide more suggestions. Feel free to PM me. I can't recall if you are working or not, have social security/medicare or not. Believe me, I know a lit of tricks!
Anyway, I'm glad you recognize how resilient your kids can be. It is so funny how within hours something you think may have devastated them just rolls off their backs! They are amazing little creatures! I used to teach and oh how I miss "my kids." I don't have any of my own sadly. One thing I wish I could have done, but never got the chance.
I wonder if you could be taught how to hydrate yourself via IV at home, or have a visiting nurse come to the house once a week, rather than you having to drive to your clinic? Just a thought.
Take care.
DG0 -
Sorry haven't time to do much on individual replies as so many posts here but wanted to do an update on my onc appt.
Dragongirl - that must have been so awful trying to keep things to yourself. It's certainly nice not to lose your hair though.
Cynthia - I need to drink more fluids, but don't suffer as much as you seem to. Hope you can get that sorted out. Can understand you not wanting to take any more meds than you have to. I'm lucky as we get free presciptions in Scotland.
Carol - you seem pretty fit to me. Feel exhausted now just thinking about your schedule.
RonnieKay - hope the hair loss slows down now and you don't lose any more.
Good news is CT scan shows disease is mostly stable from last scan. May have a tumour in groin, but as it’s been a few months since last pelvis scan not sure how long it’s been there. Just noticed recently it was swollen and tender to touch. GP thought it was a lymph node but as it’s in the fat layer onc thinks probably not. They don’t seem too worried and will just keep an eye on it now. Mentioned I had some new skin mets, but they’re not overly concerned. Going to keep me on Vinorelbine a bit longer, but will do another biopsy of the skin to see if still ER+. Onc considering Letrozole/Xoladex as next treatment if receptors not changed. Also have more fluid in chest cavity so will need to have it drained. Was a bit scary seeing how small the left lung looked next to the right one on CT scan. Only minor breathing problems when climbing stairs so not an emergency case yet. They were originally talking about doing procedure under local anaesthetic using talc to stop it coming back, but as I’m considered young and reasonably healthy still I’m being referred to the cardio-thoracic surgeons to see if they’ll do an op that superglues the chest wall instead. Takes a few weeks longer so will get the other procedure if things get worse in the meantime.0 -
I had the most terrible experience today, it was devasteting. My doc ordered a port for me, and i had no choice to accept. First the nurse was such a bitch, you have no idea...It took them over 2 hours to put the port inside, then in the hallway jelling my name, my treatment, my adress. You name it, while I was on the stretcher bed, talking to me, asking questions if I was in major hearing loss. Everybody was looking at me........
Then I was wheeled in treatment room, same thing, asking questions, how me bowels are.....I am telling you, no privacy at all. I was so upset.
Anyhow, since today I have a port, dont like it, but what can I do.....
Navalbine went fine., my liver enzymes dropped very good, almost normal, but tumor markers went up from
21.0 to 24.0.....The nurse told me, its ok,..well I hope so.
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Gail5 - So glad that your CT scan showed you're stable. I'm sorry to hear about your lung issue, though, but I'm glad it's not causing you too much trouble. I hope they can help you with that soon. It's frustrating that there are things they have to "watch", but I'm crossing my fingers for you that they turn out to not be a issue. I hope you can relax now that your scan is over.
Mamita49 - I'm sorry you had a difficult experience while getting your port. I think you will probably come to appreciate having a port at some point, though. Navelbine is very caustic and can do terrible damage to your tissue were it to escape a vein during an infusion. I had my original port removed a couple of years after my original treatments, but asked for a new port as soon as I knew I was going to be having Navelbine. I'm really glad I did because my most reliable vein has started giving out due to the buildup of scar tissue from so many blood draws and now it's a challenge just to have blood tests. A port also makes things like blood transfusions and IV hydration a breeze. And, I love having both hands free during my infusions!
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Bless you, Dragon Girl, for giving such valuable advice!!! Hope some of it helps, Cynthia! I wish I could send you some of my omeprazole...I have a ton of it! They give it to me every time I have a procedure and my stomach seems to be lined in cast iron!
Oh Gail...I'm glad you have good scan news, it somewhat evens out the other parts that aren't so easy to "digest"...I pray your lung heals up & maybe you won't have to have anything done to it!!!
Mamita...I don't know how you were able to have any infusion of navelbine in the veins. It's a "vesicant" (spelling!) so it damages your veins. Gail has it in pill form but if you're getting it as an infusion, even though it was an unpleasant experience having it put in, you will be glad you have it. I have my second one...the first when I was first diagnosed in 09...and it was probably one of the best days of my life when they took it out. But I have no choice now, so I view it as my lifeline, and it makes a big difference in how much I accept it. I still hate it
Thinking about you all...every day! Have a happy weekend!
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Hey Gals..I forgot to ask if anyone has been getting cramps....legs, hips, hands, ribs...OMG...sometimes they're so bad! I don't know if it's the navelbine but I've read you can get cramps on chemo. My sodium is fine so onc didn't seem concerned but sometimes they're so bad I look like a freak! Tell me if you have anything like that?????
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DragonGirl - Thanks so much for all the info. I have tried otc Prilosec, but it didn't work for me. I read somewhere that rx Prilosec has a different delivery method than the otc version so it doesn't work the same. I guess the company was able to patent the delivery system. I haven't tried the rx version because I moved onto Zantac which isn't as good as Nexium, but it does a decent job.
I am not working because I became a SAHM when my oldest was born, which is also why I don't qualify for social security because I don't have enough recent credits. I have private insurance so at least I don't need to worry about my insurance changing frequently since my husband works for a small company that switches policies frequently. The biggest problem with my insurance, though, is that it only covers $500 worth of rx coverage a year. I find it's usually cheaper to buy generic prescriptions than pay the $100 deductable and copays for prescriptions. I was fortunate to get my Xeloda covered by a copay foundation and when that ran out the company gave it to me for free. Right now it's all I can do to afford the generic Singulair. My medical out-of-pocket of $3000 really makes things difficult. I tried to get help to cover the Navelbine but the organization ran out of funds before they processed my application. I'll keep trying, though. Every little bit helps.
My insurance does cover counseling services at $30 per visit. Not very reasonable! I do live near a hospital but it's a small non-profit that is in the process of being bought out by a larger for-profit hospital. They have a nice cancer center where I attend a support group but with all the changes they let both of their social workers go. I am not familiar with any financial assistance the hospital offers like you mention. In fact, my friend recently called them about financial assistance and they said all they offer is 10% off if you pay your bill in full and her finances are less than ours. They also said that if you make payments, but don't have a payment plan with them they send you to collections after 3 months. The next nearest hospitals are even more demanding when it comes to payment, so, it doesn't sound promising. We live about 90 mins from the nearest university hospital. It's wonderful that you have so many resources so close to you! I appreciate you caring enough to try to help me find services.
I hadn't thought of getting the hydration from a visiting nurse. On the other hand, my infusion nurses are more familiar with my situation and can tweak things as necessary. I ended up having to go yesterday for more fluids and they added premeds of decadron and zofran because I felt so awful. They also threw in a B12 shot which I'd never had before. I'm feeling better today, and I hope it lasts. I'm off both chemos this week and it's the first time I got a break from both of them at the same time. I hope it gives my body a chance to bounce back a bit.
Thanks again for all the suggestions. I will try to see what I can find out as far as services in this area. I really appreciate it.
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Well crap,
I just typed up a whole response and lost it while trying to correct a few typos. So, here's the abbreviated version!
Mamita,
I'm with everyone else...you will be glad to have the port eventually and it will not give you any discomfort once it heals. I suggest you make a complaint with the hospital regarding the staff's lack of respect regarding your privacy. That is a big deal, and they should take tour complaint very seriously. It sounds like they were in violation of HIPPA law, as well as your Patient Bill of Rights. Use those terms when you call to make the complaint, that will get their attention.
Cynthia,
Well, I had a lot to say, that got deleted. It is late, and I will rewrite it this weekend. In the meantime, go to www.cancercares.org and read a bit about their services. They provide assistance with medical and prescription co-pays, general financial assistance, advice, AND free counseling via phone for people in your position. The counselors are all licensed and certified, and have experience working with cancer survivors. They also sponsor some discussion threads, chat rooms and group counseling via phone. I have not used any of their resources myself, but they appear to offer a lot.
I have some other ideas....I'll get back to you...one question...have you looked into receiving SSI? (As opposed to SSD.)
DG0 -
Hi Girls
Tumor Markers dropped another 116 points. Navelbine continues to work. No scans till mid to late May.
Still losing strands of hair but the perm didn't seem to do any damage.
Hugs!
Robin0 -
Robin - Glad it's still working for you and the perm didn't cause your hair to fall out. My hair is still shedding, but it's a slow shed so it's better than it just falling out.
DragonGirl - I'll look into Cancercares.org. I'm pretty sure we wouldn't qualify for SSI because I think it's income based. I'll investigate. Thanks for the suggestions!
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Mamita - that was a horrible experience getting the port fitted, but hope you get some benefit from it at least. I might have had to get a PICC fitted if I was on the IV version instead of the oral one, although the chemo ward is usually pretty good at getting a decent vein and I mostly have problems with CT scans. I don't think it's uncommon for TMs to go up a bit at the start of treatment, but my onc doesn't rely on them so I've no idea what mine are.
Cynthia - it's awful you have to such a financial problem with treatment on top of everything else. Good luck with getting some help there.
RonnieKay - I will have to have the fluid drained but hopefully the pr.ocedure will stop it coming back again. I get bad cramps in my legs during the night, I keep forgetting to look into that but sounds like it's another SE. You seem to have it much worse than me.
DG - it's such a pain when you get to the end of a long reply and it goes AWOL.
Robin - great news on the TMs. Also good to hear the perm hasn't caused any lasting damage.
My chemo has been postponed till next Tuesday. Have been getting more out of breath and coughing, but they think it's possible I have a slight infection and not due to the fluid getting worse as temp was slightly elevated. They checked the chest and think it's much the same. Also may have infection where ulcerated skin is broken. So am now on double lot of ABs try to clear things for next week.
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Thanks Cynthia and Gail
Gail...sorry about the infection....I hope the AB's kick it quick for you.
Cynthia....phew about the hair!
Just to let you know, we are going on vacation next week....flying to Las Vegas to meet up with family and friends and just forget about everything on the East Coast. Have a great week!
Robin
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Oh..my love to all the east coast sisters...so much to deal with emotionally, like we don't have enough already! Robin...I'm so glad you're happy with your hair, especially when you're going on vacation. Have a marvelous time thinking about everything except bc!!! Maybe my coloring had a little to do with my strands coming out...but I think even though Navelbine isn't supposed to lead to hair loss...I'm not convinced! It sounds like we've all experienced some of it. C'est la vie...and I'm not sure I won't color again...LOL!!!!
Gail...hope the AB clears up an infection lurking and breathing is easier!
Thinking of you All! Did you all see Ms. Divine's message about counting how many of us there are? Have a blessed weekend!
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Hello Ladies,
Cynthia, my apologies for not getting back with more information. My PET came up semi-crappy, no new mets but increased FDG activity in spine, enough to have to change my chemo. Plus, I'm having some stomach problems necessitating a bunch of tests (probably not Navelbine related...hernia, gallbladder, pancreatitis...just don't know yet) so I we go next week for an MRI, upper endoscopy and maybe a colonoscopy. Needless to say I've been preoccupied! I'll probably start Abraxane once the tests are over. If I think of anything else for you as far as financial assistance, I'll post it ASAP.
Oh well, it worked for a while, and my mets are still confined to bone, so that is good. Just another blip on the radar screen of life. At least I get a few weeks sans chemo and the weather is warming, so going bald is no biggy.
I'll keep subscribed to this thread anyway.
DG0 -
DragonGirl - so sorry about your scan results. What is FDG? I'm hoping your stomach problem turns out to be nothing too serious. As if you didn't have enough to deal with.
Robin - have a great holiday.
Had a call from the hospital doing my pleurodesis to go in tomorrow and hopefully having the op done on Monday. Just need to phone tomorrow morning and make sure they still have a bed for me. If all goes OK should be out on Wednesday. Might have worked out having chemo postponed as should help boost blood counts. Unfortunately also means chemo won't go ahead on Tuesday either now. Don't know what the internet access will be like in case I can't keep up with everyone for a few days. Looking forward to breathing again.
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Had my infusion yesterday, I have a port now........:(
Liver enzymes went up again, but I was told its ok, due to medication.
Tumor markers are now 16.....Yeah....Was last week 24.
Robyn, wish you a great vacation.
Gail, Monday I will be thinking of you......I am sooo sure it will go all fine. I am jaelous of you living in Scotland, must be
so beautiful.....
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Hey Vanilla Beans,
I haven't checked the thread for a while, so I'm trying to catch up...
Gail - I have been thinking of you ever since your scan, so glad to hear it was stable. Sending best wishes to you regarding your lungs, I hope you are breathing easily soon. Regarding leg cramps, I have a couple suggestions. I do think the cramps are navelbine-related because I have had terrible foot cramps since being on navelbine, especially at night. There are a couple things that help. The first is electrolytes, which you can get from sport drinks like gatorade. In Seattle, we have a product called Nuun, which is electrolyte tablets you disolve in water. They are amazing! No sugar, which is nice (gatorade is so sweet). When I'm having cramps, I drink a Nuun and it works within minutes, truly amazing. If you can't buy it locally, you might try ordering from their web site (or PM me and I'll ship some to you, they are truly miraculous in my opinion). You might also check running stores or websites as I'm sure there must be similar products. I also keep a bottle of tonic water on hand because the quinine supposedly helps, though I'm less convinced about it versus the electrolytes. The third suggestion (sorry if this sounds a little nuts, but it seems to work) is to put a new bar of soap in between your bedsheets. I know it sounds completely crazy and there is no scientific evidence to support this, but what the heck, if it works, there's no harm, right? The nurse at my cancer center gave me all three of those recommendations, so I think they are very safe (and not quackery, :-))
Mamita - sorry you had such a terrible time with your port, but glad it is in and working. Happy to hear your TMs are down too.
Cynthia - sorry for all the financial woes, I wish I had helpful advice. The only thing I can think of is to ask your cancer center for a financial assistance application. Most non-profit hospitals have a sliding scale based on income. If you qualify, maybe you can get all your services through them including Nexium and counseling services.
Dragongirl - sorry you'll be leaving us, but hope you are on to an effective treatment soon. Take care!
RobinNY - have a great vacation!!
As for me, I'm doing well. I took a tramadol at treatment this week and it seemed to help with my weird heartburn/chest pain problem. I'll try again next treatment to see if it was a fluke.
On a side note, I posted on another thread, but I was in Boston cheering on my sis-in-law at the marathon. We were about a block and half away from the finish line when we heard the blasts. It was scary and just so terribly sad. Thankfully, we were together and made it back to our hotel. Certainly puts things in perspective. So happy to hear they caught the suspects and the city can breath a sigh of relief!
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DG - So sorry to hear about you PET results. I hope the docs find out what's going on quickly. I'm glad you'll be hanging around with us even after you switch chemos. You're part of our Vanilla Bean family now and forever.
Gail - Good luck with everything and I hope you start feeling better soon!
Mamita - Yea for your tumor markers going down. That's always such a relief.
Nancy - That's interesting about the Tramadol. I paid more attention the last time I had chemo and realized that the pain was definitely different than reflux, although I did feel some tummy gurgling going on. I took a Zantac before I even went and it wasn't as bad as it usually is, so maybe reflux is a part of it, but not all of it.
My onc is part of a two onc private practice so no financial aid there, but I'm still working on finding some help.
I'm so relieved to hear you were out of harms way when you were in Boston. It is such a terrible tragedy. My husband is from MA and all of his family is still there. Everyone was safe, but it really was such a shock.
As for me, I got the call Thursday telling me that my red cells were dropping again and could I come in for a Procrit shot. I was honestly mad. First, that I had to drive 30 miles round trip just for a shot; second, that the shot probably won't work again; and, third, that it's only been 4 weeks since my last transfusion. The nurse working that day (they were closed, but she was asked to come in) is my favorite so she was very understanding and explained that my onc was trying to prevent my having to have another transfusion by catching it soon enough. i don't think it's going to work, but stranger things have been known to happen so I guess it's worth a try.
I hate being anemic. It's so hard to stay awake and I hate napping. If I weren't also dealing with being dehydrated, I could just overdose on caffeine, but it's not a good idea right now. So, I drink diluted iced tea, and eat chocolate just so I can be alert enough to drive. Then, follow it with lots of water when I get home. I think i need a nanny!
Good luck to everyone going through much worse than I am!!! I hope this week is okay for you.
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Cynthia...so sorry about your red cells...do they think they should adjust your dosage of navelbine to prevent it???? As if they haven't thought of that! Anyhoo, I also don't understand why they don't know the results of your blood test before you leave for the day? I have my blood draw and an hour later, treatment. They have the necessary blood counts then. If I'm having a full panel (liver enzymes, markers), I may not have the final report until I leave a couple hours later. I just hate that you have to drop everything and go back for more treatment. I'm thinking of you & hoping those cells rally big time this weekend!
Gail...I wish I'd read this earlier. I may have my stomach bulge (from diep) repaired soon & my nurse told me about a drink they're giving people who are on chemo, before they go in for surgery...BOOST. I guess it just "boosts" the immune system at that down time. I'm praying you have great relief after this procedure & breathing is a piece of cake!
Nancy...I can't imagine the fear & concern you had as you & your family lived through the terror of the bombings...and all that came afterwards. Thanking the Lord for the safety of your family! I had treatment Wed and felt kind of punky this week so I was on my couch, glued to the tv...not a healthy place to be, I don't think...but tried to get moving yesterday. I am very excited about the Nunn...thought I'd get some today. We live close to a running store in Renton but today's the Seahawk Run so I'm sure it'll be a zoo around there. Our church is in Seattle so I may stop at Sound Sports on our way home...have you been to that shop? I LOVE the owners...also a breast cancer survivor. Anyhoo...will be glad to find something less sugary than gatorade. I actually tried it but I find I can hardly tolerate the sweetness so I don't follow through with it. I'm glad you've found something that helps with the chest pain during treatment!!!
Mamita...yeah for tm's dropping!!! The last time they checked mine, it was at 1. On the paperwork it said it was rechecked by another lab since there was a large discrepency since the last test (a month prior). The test earlier was 7, and normal being 0-5, they considered it a large drop. I asked the chemo nurse, a bit panicked, and she said I need to stop thinking everything is going to be bad...that it was fantastic & I should be excited!! I said with the 3rd diagnosis in less than 4 years, I tend to think things may not be "all good!" Soooooooooo, next week is the same full panel & I'm just hoping for more good stuff ahead! I'm not quite 4 months into my port and I really hardly feel it now...notice it, yes....feel it, no. Hope yours is doing its job nicely!!!
Robin...thinking of you and hoping you're rolling in the dice...and dough!!!!
Happy Sunday....Monday (Gail!) to you all!!!! We'll wait to hear good news Gail...now it's time for r & r!
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RonnieKay - I get my labs drawn locally a few days before my onc appt., so they do know my results in advance. This time, I had my labs on Wed., and they called me on Thus., when they got the abnormal RBCs. My onc appointment followed by chemo isn't until Monday. I'll see what he says about the low red counts and dehydration. I hadn't considered that he might lower the dose. We had to do that with the Xeloda when I was on it the first time. Xeloda really doesn't like me. tt's always such a balancing act.
I see my gp on Wed and I plan to ask him to run more blood work to make sure everything else is okay, like my thyroid, B12, Vit D, etc. I want to make sure nothing else is contributing to these side effects.
I hope you have a nice weekend!
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Ronnie- My TM is 15-3 Cancer antigen test, thats the name of it, and it says that normal range is 0-31,3, ( i think its the normal BC TM )
Yours said normal range 0-5, I dont know what kind of TM that one is, but it seems a different one than mine ?????
The range 0-5 seems strange to me, since my normal range is 0-31,3.
Anyhow, whats the name of your TM, since many TM correspont with different cancers..........
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Cynthia...hope all went well today! I just asked about lowering the dose because that's what people (mostly blood draw & sometimes chemo nurses) ask if my onc will do, since every 3rd week my white counts are too low for chemo. It's funny, because I asked my onc if I'm just on the 2 week on, 1 week off regimen, because that's how it's gone since starting in January and she said no....maybe she's hoping SOMEDAY my wbc won't be too low. Not lookin' good for that...HAHA! Anyhoo, my gp did a blood test on me in October because I went in saying I didn't feel right (little did we know my liver was growing tumors!) and she found my B-12 was really low. So she had me start taking that. I also had to go on bp meds...lowest dose, but it still made me sad. My bp was always 116/68...religiously! Suddenly it was inching up to the 140s/80s...no one was really too worried in the cancer world, saying 1) meds & 2) being over 50...it still sucks! I think you're very wise to see what other things may be contributing to your not feeling right...aside from that bc part! That's what stinks about the bulge in my stomach from diep recon...it hurts and alters my life beyond what cancer treatment does...and that's just not right
Mamita...There are 2 different results for tumor markers from my center...one is the Carcinoembryonic Antigen...normal is 0.0-5.0, that's the one of mine that reads 1. The other is the CA 27.29 (which I'm sure also means the carcino antigen)- which they list normal as 0-37. Mine is 16. My guess is that's the same one you're listing. Aren't we amazing! Let's hope they stay that way! My CA 27.29 was 109 in December, when diagnosed, and the Antigen was around 400 so I'm happy!!! I'm hoping my onc does scans before too long. She says she's waiting to see the most improvement possible and there's no reason to scan when blood tests are showing good results.
Saw my ps today to talk about fixing my stomach bulge from reconstruction. Onc said I could take a 3-4 week break from chemo to get it fixed, but he's very tentative, saying my tests look so good that he hates to possibly put stress on my system. As much as I was looking forward to getting it fixed...I may wait....which leads me to...........
Are any of you experiencing dry eyes? Mine have been incredibly dry the past few days so I'm wondering if it's navelbine (or maybe the perjeta?). My hair's still coming out a few strands at a time. Wearing my black jacket isn't a good idea!
Take care everybody...thinking about you!
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RonnieKay - My onc appt and chemo went well today. My onc doesn't seem too concerned about the dehydration or the low red cell count, but he is scheduling me for a PET scan. My last one was in Nov. I really should ask him why he's doing PETs now instead of bone scans. He probably wants to see if my cancer is migrating to soft tissue.
My nurse gave me additional hydration today so the countdown begins to see how long until I need more. As for dry eyes, when I wait too long to go in for hydration, my eyes get heavy, sensitive to light, and start to burn.
I'm sorry to hear you are dealing with other issues, in addition to the low WBC. Sometimes it just gets to be too much so I hope you can get those issues taken care of. I'm on a bp med to keep my heart from racing and doing the jig. I was really resistant at first, but I started it in '08 I think and it's been wonderful for keeping my heart under control. One study of people on beta blockers showed that they felt less anxious. I believe it. Not only does my heart not overreact to stimuli, but I feel calmer in general. It does tend to cause my bp to be a tad on the low side since it was normal to begin with, but it doesn't make me light headed or anything.
My tumor marker is the CEA and the range is <5.0 for non-smokers, but it depends on the particular assay method used. Mine is down to 259.7 from 500+ since I started this chemo combo. I doubt I'll ever be in the normal range again, so I just go by if it's going up or down.
Take care everyone!
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Mamita - great news about the TMs. My onc doesn't rely on them so no idea what mine are but seems good.
nancy - will look into your cramp solutions when I get a chance. Can't always get same products here but might be something similar. Hope the tramadol wasn't just a fluke. Anything that works. Must have been scary being in Boston there. Just glad they got them quickly. Could have been so much worse.
Cynthia - your in-laws were all OK. You seem to get your blood tests done quite early. My unit would only accept them if done within a couple of days of chemo, so as GP surgery is closed over the weekend I have to do them first thing on Monday for Tuesday chemos.
RonnieKay - my eyes don't feel dry but sometimes one of them waters a bit, which oddly is supposed to be a sign they're dry. Hope your hair has settled down.
Have had a few days in hospital for my operation and just got out yesterday. Still only allowed light tasks and short walks but breathing is improving and have to be patient. Chemo delayed until Tuesday so hoping will feel much better by then as don't want to miss it again.
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Gail...So very glad for easier breathing...take it slow & easy! I know how you feel about missing chemo, but you need to gather your strength! My wbc was .9 Wed and they hold it unless it's 1.0. The chemo nurse said she was calling the onc cause maybe she'd want me to have it since I was so close. I was hoping onc said No...and she did! I like the 2 weeks on, 1 week off and it seems to be working!
Cynthia...You are exactly right about dry eyes...I have those same symptoms. Guess I need to hydrate more...which I've always been bad about. Gail...my nose drips, wish my eyes would...oops, gotta be careful about what I wish for! The same nurse on Wed said that perjeta causes alopecia & thinning. So, even if my onc thinks it was just coloring...she thinks it's more the perjeta. It's just that it's pretty new so not as much info on it.
TGIF here! Have a restful weekend All!
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RonnieKay,
The eye tearing is probably due to blepheritis, which is fancy term for dry eyes. That and the runny nose can be caused by many chemos. A few tips for the eyes:
There are pores inside your eyelids that get clogged, which is what is causing your dry eyes. Your eyes tear in an effort to provide enough lubrication for your eyes since the pores are blocked. You can use preservative free eye drops from the drug store throughout the day to help this problem. I had it pretty bad and even that did not help. My eye doc and I tried a few prescription drops to no avail, then he tried me in a new eye drop called Azasite. It is a type of antibiotic drop that uncligs the pores which may become infected if clogged to long. Also, you cab use a warm compress on your eyes at night before bed, the heat helps in clog the pores. Apply compress for a few minutes and then rinse your lids with warm water.
I wish I could help with the nose running, I have that something awful too. It started when I was using Xeloda and continued on through the Navelbine. I tried all sorts of antihistamine prescriptions and even one that was meant to dialte the blood vessels inside the nose to reduce the. inflammation and discharge. No joy.
hope this helps.
On to probably Abraxane in a week or so. It is that or Doxil, or going back to Aromas in and adding Affinitor. I don't have much confidence in the aromas in combo as it never worked at all for me without the affinitor. The Doxil sounds like it has some potentially dangerous side effects (heart damage) and is a rougher chemo all around, including my nemesis Hand/Foot syndrome. So I go bald on Abraxane, big woop.
Anyone beenon any of those? Your experiences re: side effects?
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Dragon girl, I had one dose of doxil and 2 wks after, ended up in hospital with 2 blood clots and 2 liters of fluid in my pleura. I had just had scans 2 wks before and there was no sign of fluid at that time. I was taken off the doxil and moved on to taxol. Course, you know this was my experience and not necessarily what you will experience. I know you will do your homework. Good luck on your decision.
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Dragon Girl...My husband has eye problems (pterjon???)...mostly due to growing up in dusty Eastern Washington farm land. I grew up there too but it never bothered me (my dad was a farmer, his was the doctor...maybe that's why..LOL). Anyhoo, he has every eye drop known to man so I've been using one of his drops that's meant for lubricating and it's working pretty well...but you're right, you have to use it throughout the day. I will definitely try the warm compress...why I didn't think of that! I think warm compresses are the answer to so many things! As for my nose...I had the same drip when I went through chemo the first time (although then I knew there'd be an end date, sure enough, chemo ended and so did the drip!). Only 1 nostril drips and it's the same nostril that sometimes bleeds when I have low wbc, so there's definitely a sensitivity on that side. I'm living with it...just say "chemo nose" when it drips in front of people unexpectedly!!! I wish you the best on your next line of drugs..whatever it may be..MAY IT WORK MIRACLES!!!!
Hope it's a happy Saturday everybody!
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