Navigating Navelbine
Comments
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Gail5 - I'm glad your're out of hospital and recovering. I hope you continue to breathe better and better.
Dragongirl - I haven't had any of the chemos you may be going on so I can't contribute there. I hope whatever you choose works well for you and doesn't have a lot of side effects.
I have Navelbine tomorrow so I'll find out if the Procrit helped my red count. If I had to guess, I think it has. It woud be a nice surprise. I did start to feel dehydrated starting yesterday, but I'm relieved that it waited until I'm due to have chemo shortly so I didn't need to make another trip to my onc's office. I've been feeling mostly okay, just sleepy and brainless. And, I'm tired of the hand and foot syndrome. My gp wants me to try Eucerin cream with gloves at night, but I don't think heating my hands up is a good idea so I'm procrastinating. Plus, it's not so much the dryness and cracking, but the burning, leathery, tingling sensations that are difficult.
Oh, I relented and started taking an antidepressant. It's just something I haven't wanted to do and didn't feel that I needed. I'm not depressed, but I have a very short fuse and am prone to angry outbursts. Then, the low red counts and dehydration make me weepy so my infusion nurse and gp have repeatedly suggested an antidepressant. I reluctantly agreed when I saw my gp last week, but I told him it had to be cheap. He prescribed Citalopram which is generic for Celexa. I started it Friday and so far no side effects. I hope for my childrens' sake, it works for me. I'm really tired of being so impatient with them.
Best wished to all and I hope everyone has a good week!
Cynthia
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DragonGirl, I had Abraxane and it wasn't too horrible. I had aloxi as a premed (long acting zofran basically), so I really didn't have any problems with nausea. I did get tired after being on it for a while and I had a stuffy/runny nose, especially in the morning. I lost my hair, but oddly it started growing back after a few months (fluffy/fuzzy chemo-hair, not exactly luxurious locks, but still). Best of luck to you, let us know which one you choose.
Cynthia - I hope the procrit did its magic on your red counts. Good luck on the anti-depressant too.
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Well, the Procrit didn't work and my red count went down a bit. They're gonna give me another shot and I'm still getting chemo. Looks like my white count dropped too as well as platelets. I have a feeling this is gonna be a difficult week in terms of side effects. At least the steroids will help me stay on my feet for a few days.
I'm almost out of Xeloda and my onc sent paperwork to the pharmacy saying I will need assistance with the cost. I hope things go as smoothly as last time. They sent it to a diffferent pharmacy this time. They have about two and half weeks to get it all worked out before I run out because they say they didn't get my onc's fax last week. That's not a good sign.
Hope everyone is coping!
Cynthia
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Frapp and Ronniekay,
thanks for your input. I am aware that the potential side effects of the doxil can be worse than Abraxane (especially potential heart damage.....the same reason I gave up my last chance for Avastin). I've pretty much settled on the Abraxane but was just putting it out there to see what popped up. Of course I known everyone reacts differently to different chemos. I really could care less about going bald. I've been there done that and it was no big deal for me (although my mom was pissed I refused to buy a wig and would not let me join for dinner at the country club she belongs to, because she didn't want any of the gossipy nasty old golf ladies to know how sick I was.She doesn't want to be the center of their gossip or feigned pity). I took that as a blessing because I really don't like going there anyway, all the people are stuck up and self absorbed, and the food is not all that! Unfortunately I may not be so lucky this time since she is alone having lost my dad and likes company when she goes, so I may give in and buy a wig just for that purpose.
Yuck...I itch just thinking about it!
DG0 -
Cynthia,
In gonna try to PM you about the Xeloda problem, look for that.
DG0 -
What a good daughter you are. I've been bald for over a month now and have not tried wigs yet.
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Cynthia,
Me again! I'm back! Check for my PM. One question...are you taking Navelbine WITH Xeloda?
DG0 -
Frapp,
I found being bald quite liberating actually. No hair to have to mess within the morning suited me just fine. There were some chilly days in the winter but overall no big deal. I have tons of baseball hats and quite a collection of bandannas and small caps which I saved. Frankly, I could care less what anyone thinks.
DG0 -
DragonGirl - Yes, I'm on both! The Xeloda is a week on/week off schedule.
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Dragon Girl..Do you think it's more that your mom has a hard time dealing with your illness as opposed to others (country clubbers?). I got out of a speeding ticket with my bald head & got free hors d'oerves at a very nice restaurant too! Thinking of you deciding on what's going to heal you!
Cynthia...I'm so bummed that this was a difficult week for you. I hope the anti-depressant works, being less anxious is a good thing, especially going through all the ups and downs of treatment. Personally, my 1 year on prozac was one of the best years of my life & that was before bc!!! Also hoping they get your xeloda taken care of...and funding it would be even better! Dragon Girl...are you in the medical business??? You seem to have such valuable advice on so many subjects.
Take care all...treatment tomorrow & 1 month meeting w/onc.
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RonnieKay - know what you mean about needing to build up strength. It probably worked out well having a week off before and after op as definitely feel much better for it now. Hope your WBC picks up again. I'm on 14/7 schedule as standard so I guess we must need that week off. Must be difficult having a combo where more than one drug is thinning the hair. I can just about get away with it on one. I get the nose drip on one side too.
Frapp - that sounds like a scary experience on doxil. Hope you're doing well on taxol.
DG - can't help with any of the options, but let us know what you decide.
Back on chemo yesterday. Blood counts almost normal after the chemo break at least. Realised it was 4 weeks since lasst dose so hoping the uggers aren't too out of control yet. Getting stitches out tomorrow so looking forward to getting that one out of the way. Breathing is improving a bit each day. Having a biopsy of skin mets on Monday to check if still ER+ so onc may go with hormone therapy for next option.
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RonniK,
Yes, certainly my mom's difficulty with my illness comes into play. She is afraid of losing me and although she knows I am ill, I think she prefers to avoid thinking about that. Having anyone bring it up is no doubt painful for her. I can't imagine how my having this diagnosis must be for her, just aweful I'm sure. Of course I wish I could do something about it but I have had to come to accept what is probably inevitable, but I will do my best to live well as long as I can.
Actually, I don't have a medical background per say. I did work in an ER as a patient care assistant for 3 years and at one point was considering medical school or PA school. I have an undergrad level education with a focus on biology. The rest I have just picked up by reading and educating myself as a patient. I had the bad luck of being ill during my twenties and thirties, thyroid problems and a rare condition caused by having an extra rib (cervical) called thoracic outlet syndrome. I also had severe GERD starting in my early thirties. So, I had a few surgeries even before I was diagnosed with cancer. I learned about the health care system the hard way. I was bankrupted and lost my job due to my BC diagnosis, and I had to figure things out for myself.
Thanks for thinking of me. Actually, I'm pretty OK with the situation. Right now I am looking at either Abraxane or the Affinitor/Aromasin combo, having ruled out the doxil because of the risks and side effects. I started reading about the Affinitor and discovered that it may be useful to me as it works by interrupting a chemical pathway (called mtor) which is connected to the snrp genetic variant I carry (information I got from my genetic results from the 23 and Me study on Avastin)...maybe it WILL turn out to have been useful to my care to have participated. But, I have to read more to he sure and talk to my doctor. I've been off chemo now for about 2.5 weeks and other than having neck pain (the nurse twisted my neck during my endoscopy when trying to place the thing that keeps your mouth open...she could have just ASKED me to lift my head, I WAS conscious still after all). I'm pissed about that since I feel so good otherwise. Oh well, it's back to treatment next week. Wish I could just pretend it wasn't there and go on like this! Vacation over.
Take care you all!
DG
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RonnieKay,
How do your doc appointment go? Your son is a cutie! (I assume that is your son in the picture.) Looks like we are about the same age. I have not posted an avatar because my tablet wont let me and my computer doesn't work. But, I am gorgeous, you can take my word on that....:)
DG0 -
Hi Everyone
Trying to read and catch up with all of you....seems to have been a pretty busy 10 days.
Vacation was nice....lotsa good times with family and friends. No big winnings but I did bring back most of the money I had put aside for gamblling....not that it was alot...but nice to bring most of it home. Weather was 80's and sunny...very theraputic after Winter here.
Missed you all. My hair is still falling out strands at a time. I wish it would stop. My eyebrows have thinned some too...not that they were very thick to begin with.
My Hummingbirds should be returning this week....something to always look forward to! We only have one variety here....the Ruby Throated.
Big hug to all....
Robin
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Hi Friends,
I'm having another transfusion in the morning. The Procrit shots didn't work even a little bit this time. I usually don't do my weekly CBC the week before my week off Navelbine, but I decided that since I was having issues with my red count it would a good idea so I did it Friday morning. Then, I had a PET/CT scan this morning and called my onc afterwards to see about getting rehydrated while I was in the neighborhood. I felt awful all weekend and just assumed it was due to being dehydrated again. My nurses told me to come on in, but called back shortly and said nevermind they just saw my CBC results and my hgb was 8 and I needed a transfusion. Sigh!
Apparently, I'm just incompetent at recognizing when how I'm feeling is "normal" awful and not "normal" awful. I wonder if I didn't have that CBC at what point I would have realized I was getting worse and worse? I wasn't actually due for bloodwork until this Thursday. And, why wasn't my doctor watching me more closely since I have a history of the Procrit not working? I don't tend to imagine the worse unless I feel very, very badly or pain is involved, so I need to be told specifically what to watch for. I barely considered anemia this weekend. Plus, I'm dehydrated as well and normally fatigued. And, have a terrible memory to boot. I also talked on the phone with my nurse assigned to me by my insurance company. She told me to be sure to call my onc's office if I get any worse tonight? What does that mean? Worse how? And, now that we are sure the Procrit shot doesn't work, is it frequent transfusions (which my onc doesn't want to do), or will he take me off Navelbine? And, who knows what the PET will show.
One good thing is that the antidepressant is starting to work because none of this has driven me to tears yet and normally both the anemia and the dehydration makes me emotional. Not to mention, scan anxiety. Of course, the sobbing used to be a sign that whatever was wrong had gone too far, so now I know not to wait for that sign anymore.
Thanks for letting me ramble! It's hard to organize my thoughts. I hope everyone else is doing well and I'm sorry I don't have the energy to respond to each of you individually.
Best wishes,
Cynthia
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Oh Dragon Girl...That's my grandson, Hank, in my avatar. I am an oldie but I just know you're a cute, young thing!! We have grandkids: Josie 5, Hank 4, Hudson 2 & baby due 10/14. A couple weeks ago DD dropped boys off in am to do errands. I was getting dressed & Hank walked in. I had diep recon last June and got stage 4 diagnosis right before nipples were going to be done, so I didn't do them. He asked me, "Grandma, when are they putting your nipples back on?" Love it! Onc appt was very good...she said if my tests continue to be this good, she'll do scans in July and possibly give me a chemo break, with just herceptin & perjeta every 3 weeks...so hopeful.
Oh Cynthia...it just sounds like someone's skipping a beat in treating you...am I terrible for saying that? Maybe you're like me, "One tough cookie"...which sometimes comes back to bite me, trying to be strong. Is there anything besides the procrit...or only transfusions? Maybe you're right...navelbine is just too tough on your rbc. I guess you will see when your PET scan results are in and I'm praying it's ALL GOOD!!!!
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Where is my navelbine family? I just have to say I'm confused and a bit upset. My onc said she'd be writing orders for me to go 2 weeks on, 1 week off...since that's what's been happening due to low white counts...the 3rd week being neulasta added to herceptin. Well, my wbc has been inching up on that third week and so the chemo nurse called my onc, and even though it was the 3rd week (when I shouldn't get chemo, according to what she said she was writing for orders), my count was ok so she decided I should go ahead and get navelbine for the 3rd week in a row, along with neulasta. All I can think of is, "What did we talk about!" My results are great on 2 wks on, 1 wk off, my body's been strong and I've felt pretty good...what happens now? Do I have chemo for the 4th week in a row next week and 5th the next because my counts will be up due to getting neulasta. Crap. I just don't understand why we bother talking about it. Sorry gals...I'm venting. Will let you know what happens.
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Ronniekay,
Sorry to say, but that stinks of a miscommunication between the nurse and the doctor. Sadly, that has happened to me often enough that I usually don't rely on what a nurse says the doctor said, I insist on it from the horses mouth if I am ever in question.
That DEFINATELY merits a call to your doctor asking him/her to call you back to discuss it. Don't be shy about insisting on talking to your doctor, the nurse will get over it and you are after all paying the doctor to treat you. If you can't get a call back from your doctor then I would wonder about your doctor.
Why is it we all are afraid to speak up? Old school medical bullshit and we are afraid we are "bothering" the doctor and he/she might get annoyed, as if we are little children. Don't fall into that trap.
Make a call tomorrow. Either way, you will get the matter resolved and be able to inform your doctor that you prefer to be a participant in such decisions whenever they are made. Trust me, you'll feel better right after leaving the message.
Don't ever be afraid to speak up or even challenge a nurse or doctor. It's your body!
Hope you feel OK without the week off, but definitely be sure to talk to the doc directly so you are sure everyone is on the same page. He/she will write orders and determine dosing based on what he/she thinks transpired and may not even look at the chemo notes that indicate you had the navelbine this week. You must be proactive in such situations to be sure no mistakes are made or compounded.
Hang in there.
DG0 -
That's exactly how I feel! The chemo nurse actually was on the phone with the onc & asked me if I was ok with getting the chemo (said she was waiting for my answer). You're so right, I should've spoken to her myself & will if it happens again. At that point, I was so confused and upset, I said that whatever she thought I should do, I'd do. On the way home, all the questions started popping in my head. I wrote a long email, which is how I communicate with the office, and am waiting til my DH looks at it to send it. I told the nurse that some people may need advocates but I've always been my own advocate and I will need to find the answers! I need to know what the plan of attack is and I feel like this is really the first time, with my onc, that I was blindsided. My ps, on the other hand...that's happened a few times. Thanks for the pep talk! XOXO
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Glad to be of help RonnieKay,
Don't feel badly, we all slip into that mode when blindsided. Sometimes even our doctors don't get what it is like to live in our heads, and they forget to THINK about what they are doing. I would have a heart to heart with her the next time you see her, even if you sent that email. You will be teaching her an important lesson for those that come after you. If there is anything we CAN do while we struggle through, it's to be teachers to our doctors, nurses and caretakers. We must remind them so that they don't forget, there is always something else they have to learn, that they don't know everything, especially when it comes to how to interact with their patients!
Hope you are feeling OK.
DG0 -
DG..Thank You! Amazing the good feeling I get from friends on bc.org. Love you all! BTW...how is treatment going for you????
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DG - have you made a decision on your next treatment?
RonnieKay - hope you get things resolved with your dose. I definitely think you need that week off to recover or you just get more and more run down.
Cynthia - sorry you seem to have been having an awful time of things there. Hope you are feeling better now.
Have been a bit MIA lately as accepted an offer on our flat last week and have been spending most of my time looking for somewhere to live. Looks like we're set up now subject to conclusion of missives (legal stuff in Scotland). Still getting a bit short of breath on the stairs almost 4 weeks after the pleurodesis but maybe have unrealistic expectations of recovery time. Saw onc yesterday for results of biopsy and I'm still ER+. Since skin lesions are on the rampage just now Vanilla Bean is clearly not working so will be trying Letrozole (Femara) next. I think she feels having had less than spectacular success on chemo so far it's time for a change in direction. She was thinking of putting me down for a trial which would be Letrozole and another drug but apparently I'm not eligible as I developed secondaries on Tamoxifen. I was a bit disappointed but it would have meant a delay in starting treatment and if I was in the placebo group I wouldn't be any better off. OH confessed later the discussion had upset him as it made him think she had run out of options apart from trials, so had to reassure him on that.
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Gail5,
Thanks for asking...I actually decided to go with Arimasin/Affinitor. So, back to the hormone blocker with a chemo chaser.
I think Fermara sounds like a really good choice for you right now. I too failed Tamoxafin quite quickly. I had to go right to chemo because things were moving so fast but had some luck there with Avastin/Taxol.That is no llonger approved by the FDA here, I don't know if it is available there. Apparently a small percentage of women have luck withAvastin/Taxol with few side effects, and I was one of them. I. Got NED and then maintained with Femara NED for five years. Sometimes "stepping back" is a good approach. Tamoxifin and Femara are two totally different animals so you may just score with the Femara. I hope it works out for you. Be prepared for some hot flashes (effexor helps with those) and some aches and pains from the Femara. Otherwise it is a quite tolerable treatment. Oh I wish I wish for YOU! Please keep us posted!
DG0 -
Ronniekay,
How ya doing? How's my little cutie Hank?
DG0 -
Hello fellow vanilla beans!
Gail - I hope Femara gives you a nice long run, I had good success on it with few side effects, hoping the same for you.
DG - I'm also one of the small percentage who had great luck with Avastin (mine was given with Taxol's cousin, Abraxane). Good luck on Aromasin/Affinitor, I think that may be next on my list too.
I've been feeling so great lately, I finally figured out a solution to my chest pain post navelbine, which is to take a tramadol as a premed. It isn't perfect, I still get some pain, but it is vastly improved. No sooner have we figured this out, now my tumor markers are elevated for the 3rd month in a row. They've always been completely normal, so I'm not really sure what to think. Scans are set for later this month, so we'll see.
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Nancy,
That's very strange, about your markers. I have never had any myself so we just muddle through without. Don't assume it means bad things since you are feeling so good! It COULD mean nothing since you have never had high markers before. Stick with feeling good and let the scans tell the tale.
Good luck!
DG0 -
Thanks, DG. I'm not too worried aside from the fact my TMs have always been stone cold normal, in fact in the middle of normal range even when my cancer was at its worst...my onc isn't worried either, TMs aren't very high, only 48.6, but the proof will be in the scans. Hoping for lots more time on navelbine, by far my best chemo ever, but whatever happens will happen.
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Ah... yup on that NancyH...here's hoping for a long run on the navelbine for you!
DG0 -
Gail...you've been a busy girl. Congrats on selling your flat (I feel like I know what you're talking about after many hundred hours of house hunters international!). Hope all goes well with the paperwork. Where will you be moving? Somewhere without stairs, I hope
Good luck on femara...I'm one of the ones it didn't help. I took it after first dx and still after 2nd dx. After 3rd dx, onc said to stop. I wish I could send my leftovers to you! I had some muscle aches for a couple months & then no ses at all. So hope for your feeling good & getting your breath back. DG...Hankerdoodle is sick today. Sent him a video text and he said he wants grandma, but understands I can't get his germs. No urpies for me! So glad you have a plan of attack! Let us know how it treats you and I will just plan to hear it works!!! Am anxious for a reply from my email to my nurse about last week. She was sharing it with my onc (who I really do adore) today.
Dang Nancy...I just read a web site by Susan Love about the CA 27.29 tumor marker and it says not to be concerned if it's higher one month, then lower...ugh. I really never paid much attention to it until this diagnosis. Now..I'm so anxious seeing what that and the CEA are. I soooo hope your scans are clear! I think your ability to run/walk as much as you are is a sign your body is strong!!
Cynthia...thinking about you & hoping you're feeling strong!
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It is so crazy, I'm sitting here trying to reason with myself not to be concerned about the uptick in tumor markers (they've been creeping up the past 3 months), but darn it I'm worried. I love navelbine because it lets me live a half normal life. Anyway, scans are next week, so I'll know for sure then. CT is next Tues, brain MRI is next Friday. Results on 6/3.
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