Chemotherapy for Stage IV
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MelissaLynn
I have been on Taxol and Avastin since Feb. 9th. I had my 13thy treatment today. I'm doing really well on it so far, i hope to continue on this path. My side effects on Avastin are sneezing and bloody nose(only when i blow to hard ,but its not that bad) And the taxol my hair has thinned out ,but i still have have it. I slick it back,put Head band on. and no-one can really tell, eyelashes are falling too. I'm a little tired today ,but they give me 2 benedryl pills before treatment. I also take 5 pills Decadron pills before i leave for treatment
Stay strong
DEE
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I have now had 5 treatments of navelbine....got a lesser dosage this time due to the fact my white cells were at 1 and the onco did not feel like I needed a nuprogen shot, but he didn't want them to go any lower. They ran the CA 27/29 and it came back 476 which is down from the 659 when I started navelbine. I still have a long way to go before getting back within normal range, but at least the numbers are going in the right direction for a change so I am thrilled. Only real SE is that I sleep a LOT....would not really call it fatigue yet as I am still able to get up and go to work.
It took my nose a long time to get back to normal from avastin(was on it about 1 1/2 yrs total) ....I had nose bleeds also and the stuff that came out when I blew my nose was really gross. I was actually allegic to it and I broke out in hives after my first dose, but they gave me a premed so I was able to take it.
SInce the hormonals no longer work from me chemo is the only choice and I will say they did not lie to me when they told me navelbine was a gentle chemo.....so far so good.
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Hi, I'm new here, diagnosed in jan '10 at stage iv, mets in bone marrow and colon but no breast tumor...a bit unusual. I have no tumor markers; my main symptoms are low red blood and platelet levels. My doc at ucsf put me on weekly low-dose taxol plus monthly zolodex. The chemo was a risky move because my blood levels were so low to begin with. The good news is that the risk is paying off: my platelets have gone from less than 20K in january to almost 140K this week, and my blood transfusions have been reduced by about 50%. The plan is to throw avastin into the mix pretty soon and to bump up my taxol incrementally. Side effects are tolerable, no neuropathy yet (convenient since I'm a professional pianist), but I do have stomach issues and very little hair left! Oh, and - picking up an earlier thread - protocol at ucsf is to do PET scans every 3-4 months for stage iv (or at least for me). It's great to hear from longer-term survivors!!! Very inspiring...Kristin
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Kristin.....do they give you anything in the premed for your stomach? I think they put tagamet in mine and also I take protonics and have been since I was doing the methotrexate/cytoxin and one of those was really hard on my stomach. Glad to hear you aren't having neuropathy issues and hope you don't.
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Hi, my breast cancer metastisized on 12/09 - started Xeloda, plus Avastin, plus Aredia (bone strengthener) - couldn't handle Zometa. First the Xeloda was 2 wks on 1 off - devel hand & foot syndrome - had to go off it for a few weeks. Now I'm on 1 on 1 off. Just had another pet and some lesions improved but now there are some new ones - Dr is looking at a different chemo, so I was just researching options she is thinking of. Really don't want to go thru Taxol or Taxotere again. It's so hard sometimes, as I'm still working (no choice). Just try & keep a good attitude - it really does help!
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Dear FrancescaS - how were the side effects with Doxil? My markers were 676 when I started Xeloda, Avastin & Aredia on 2/10...they went down to 375, and 116 last month, but my pet showed some lestions improved but now multiple new lesions in my spine. Dr is looking at other chemos such as Doxil, Navelbine, Gemzar Ixempra or Taxol....just need to know how everyone has coped on any of these chemos....Sometimes I get so tired of being tired.....
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Zimmie, I am finding navelbine to be a very kind chemo and it has taken my markers down almost 200 pts in just a month...do not know much about the others e xcept for the avastin and abraxane and that was a very tough treatment for me, but it did work. We discussed gemzar, but my onco thought the navelbine would have fewer side effects and so far he's right....tiredness is the only real one and constipation, but both of those I can deal with. The tiredness is not extreme and I am still working, but I go to bed earlier than I used to and definitely get a good night's sleep whereas it used to be difficult for me to stay asleep and I would toss and turn all night.
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Hi- My situations is similar to yours. I tried 3 different hormonal treatments over the course of one year with disease progression in my bones. My onc wanted to go with gemczar or navelbine as they would have been the gentlest chemos.I went to Sloan for a consult and they suggested the Xeloda/Avastin so that is what I am doing. Ive been on Xeloda 2 weeks on and 1 off since March 30, 2010. Only SE is with my hands and feet so my onc dropped me to 1 week on and 1 week off(but that was only 2 weeks ago so I havent noticed improvement yet). Petscan next week.
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MaryCT, The onco I had seen at MDAnderson suggested xeloda for me, but since I am a dental hygienist and wash my hands constantly and am on my feet a lot during the course of a work day, my local onco thought navelbine would be easier on me. I often sit by a woman who has been on xeloda/ avastin for over a year and she had good results with it and is now in remission. I hope your petscan shows good things. Marybe
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MaryCT, I have been on the Xeloda/Avastin/Aredia since Feb of this year. Bad Hand & Foot Syndrome, I run a gas station and was worried about this from the beginning, but.....then they dropped me to 1 on and 1 off also....no problems at all, markers came down, but now I have multiple new lesions....talking about new chemos as I mentioned earlier, however, NONE are covered by my insurance....but onco said she would prob recom Navelbine, which right now is a good thing since its the cheapest. Even though I've had BC since 2004, I am still learning alot....I know nobody wants to put a "time limit" on anything, but, can somebody PLEASE tell me IF we need to get affairs in order and what not....my hubby had brain surgery in 97 and has short term memory problems, I am in control of everything, and he will be absolutely lost without me...I need to know something - to start preparing if I have to - DON'T WANT TO, but what should we be expecting? I know, alot of questions, and I prob will have more. Some of you ladies are fantastic out there and have so much knowledge - can't thank you enough!
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Zimmie,
I got my affairs in order before I even was diagnosed with Stage IV. It's never a bad idea.
Peace,
Linda C.
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Zimmie, I am not sure what your stats are, maybe have not read back far enough, but know you said there were new mets in the spine. I have had mets in my sternum, lung and liver since 98 and have since developed mutiple mets in other areas, humeral heads, sacrum, ribs, femur. Most of this occured when I decided I wanted to take a break from chemo and went back to the hornonals which worked wonderfully for me in the beginning, but also are no longer the way to go. Whenever I have asked my onco to give me a time frame, he always says he doesn't have a crystal ball, but I am sure he would tell me when we get to the point where we have exhausted all forms of treatment. What he tells me now is that he has no reason to believe that he will not be able to get me back into remission. I am not a very organized person and do not have my affairs in order although Linda is correct in saying it is never a bad idea. All I have is a generic will leaving everything to my father, and also have a living will.
I am now on navelbine and my markers went down almost 200 points in just a month. Why won't your insurance pay for navelbine? And why aren't the others covered? Due to pre-existing? Would you qualify for help from the drug companies? Having cancer is bad enough without having to worry how you will pay for the treatments.
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Zimmie- I know that no one wants to talk about time frames b/c as Marybe said, no one has a crystal ball. In March 2009, when my regional spread was detected to nodes in my chest and in my bones, one doc told me years but probably not decades. That wasnt very helpful. When you read the posts of some of these women on this Stage IV forum, many have lived with Stage IVfor much longer than that. I think having a living will with all of your own preferences for the rest of your life, is good to keep your sense of control and to allow your family to know how you would like things to be handled.
Re: the chemo, check the website for the drug company for Navelbine. They usually offer some assistance if your insurance doesnt cover it. All the best to you!
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I WAS DIAGNOSED FRIDAY 6/11 WITH STAGE 4 ER,PR+, MET TO BONES IN SPINE AND HIP. I AM SO GLAD YOU HAVE GIVEN ME HOPE AS MY HORRIBLE DR. GAVE ME NONE. I JUST REQUESTED MY RECORDS BE SENT TO MD ANDERSON AND CANCELLED CHEMO STARTING TOMORROW. I FEEL LIKE I HAVE A CHANCE NOW. HAS ANYONEE HEARD OF STARVING CANCER BY CUTTING SUGAR OUT OF DIET. IT ACTUALLY MAKES SENSE TO ME BUTT I WOULD LOVE TO HEAR FROM SOMEONEE WHO HAS TRIED IT.
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Please take Your Caplock of sweety. It is like you are screaming at us and hard to read.
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First let me say what a GREAT help you and everyone else has been! I'm making the decision to go with navelbine - when I looked it up on my insurance it says not covered but supposedly it's only $75 a month - I paid $329 for my last Xeloda. You have given me great hope and I thank you for being on this site. I have mets in my sternun, ribs and spine - multiple new lesions since starting all of this 2/09- taking a bone scan wed. Thanks again, I will slowly try getting things together!
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Zimmie, I think you will like it....although I guess that is a pretty stupid thing to say because who really likes chemo. What I mean is it is a gentle one....at least it has been for me so far. No hair loss, no loss of taste, no funky nails, no clogged tear ducts, no rash or peeling skin, no nausea. I will admit I am extremely tired and do get constipated for a few days, but those are no big deals compared to what it could be. I have had 6 treatments so far and it appears to be working, which is what is most important. I hope it works for you and you have few SEs also. My onco told me it would on my liver mets as well as the bone so I am hoping he is right.
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Dear Marybe, you are too funny - yes, no chemo is fun, but can I ask how often Navelbine is given? I'm going to tell my onco that this is the one I want - she did put a star by it's name when she gave me the name of 6 as to the one she would recommend. Wish me luck, as far as tired, nothing new - I also stand on my feet, but unfortunately with the gas station its 9-10 hours a day - I have to work 50, even tho its been more like 47 lately! Thanks for being here for all of us, you are an inspiration.!
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Zimmie, I get navelbine once a week. I also get zometa, but that is only every two months....used to be monthly, but since I have been getting it forever, asked my onco if we could reduce the frequency. I am going to PM you.
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klewandowski, Let me know how you do at MDAnderson. I went there last year and was very impressed with the facility as well as the onco I saw.
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I just started my first chemo yesterday, Taxotere and xeloda, mets to aux lymph nodes and adrenal gland. taking b-6, trying to find l-glutamine, got some cream for hand and foot, pharmasist rec folic acid for hand and foot (anyone ever heard of this) and also clear nail strengthener for fingers and toes for ugly nail syndrome from taxotere. am juicing every day, apparently,fresh blueberry juice is good for us TN also vit d, anyway, seems like a full time job so far! am I missing anything.......... oh yeah, and when I asked the pharm if she she thought the side effect of the runs from Xeloda would be cancelled out by the side effect of constipation from everything else Im on, she just laughed and and maybe...
thanks guys, you are such a wealth of support and information
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Has anyone experienced pain after their abraxane & avastin infusion? It' right were the rib met is. has anyone experienced pain from any chemo?
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Hi,
I was diagnosed with bone & liver mets in April. Had 4 weeks rads on cervical vertabra due to cancer there. Now chemo. Had 2nd treatment taxotere & cytoxin yesterday and I don't feel good. I think maybe all the decadron they give me to take the day before, day of, and day after treatment isn't helping. I know they say its important as less likely any allergic response to the chemo, but it makes me feel pretty weird too.
Yes, Reneepals, I have had some pain in legs and arms last chemo. I think taxotere does that. I'm wondering what else I can expect from taxotere even tho I do realize it is different for different people, I'd appreciate any info. I do feel pretty bad today.
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HIall!
My mom was diagnosed with stage IV breast cancer in nov 2009 with mets to lung and bones. She has undergone 5 cycles of chemotheropay and she is now totally cancer free.What worked her was chemo complimented with a very very strict diet.She was on 9 servings of fruits and veggies which included lots of brocolli and brussel sprouts.,3 cups of green tea ,500 mg of vitamin C and a good multivitamin.She cut out all meat from her diet except ofr fish which she ate a lot like 4 to 5 times a week.So please dont lose hope
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Judie,
I am on Abraxane which is in the same family as Taxol & Taxotere. But the side effects are supposed to be a little better. The reason why we chose abraxane was because the neuropathy is not supposed to be as bad as Taxol & Taxotere. Four yrs ago when I did taxol, my neuropathy in my lower extremities was horrible it went all the way up to the bottom of my knees. It took a year to go away, but it did go away. My nasal passages were dry ( they are starting up again) I would get a little blood when blowing my nose. It seems like I sneeze and sniffle now from my current treatment. I seem to be having a little acne wanting to pop up, I just got a script for benzol peroxide. If it gets bad my onc said she will send me to a dermatologist who specifically treats break outs from cancer treatments.
Right now I have nothing to add except I hope all goes well with you and I'm here if you need me.
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How are you all getting along with your treatments? I have now had 8 navelbine treatments and am so tired sometimes, I can't stand it. I stopped taking my celexa thinking that it was part of the problem since I was feeling sleepy after taking it and that was before the navelbine....I remarked to someone how it was making me sleepy and she said oh, no an antidepressant doesn't do that.....well, I have news for her, I read the info sheet and tiredness and even yawning were down as SEs. I asked my onco if a shot of B12 or some vitamins would help and he said I could take them, but they wouldn't help...he did however suggest I take ginseng so I am trying that . The past few weeks I have been having muscle cramps and joint aches....asked about that and he said that would be from the Navelbine. I asked why I didn't feel those things last month and he said because the side effects with this are cumulative. Oh joy. Oh well, I still feel like a human being and really can't say I feel bad so I still feel this is a good chemo....especially since my tumor markers are going down.
What chemo was your mother on, Fightcancer?
Renee, Maybe the bone pain after the treatment means it is working. After two weeks of Navelbine, my shoulders and hip felt worse and I told myself maybe it was the chemo doing something good and it was!! I no longer feel pain at all in those areas.
Nice to see you posting Judie. Maybe they can adjust your dosage of decadron.
My onco told me people look at chemo as the enemy and this is a misconception. Cancer is the enemy .
Must go to bed now.....sleep is my new best friend. Marybe
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Hi Marybe,
Sorry you are so tired. Try to get as much rest as possible. Sleep is really healing. Its always been my best friend! I am so glad your tumor markers are going down, that is very good news.
You are so right that we can't see chemo etc as the enemy. It is the CANCER we are fighting, and unfortunately the chemo takes a tough toll on us too, but its also blasting the cancer but GOOD!
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Hi Renee,
Thanks for your post. Good info on Abraxane and I will keep it in mind to ask about if the neuropathy gets bad. I try to remember to keep notes about all the important stuff I learn on this board!! It really is a wealth of information. Hope you are doing okay and thanks for your help.
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Hello Marybe,
Your story is uplifting to say the least. My mum was diagnosed with secondary bone mets last week. She had breast cancer in 2003 and has been on Tamoxifen. We are awaiting results of her CT scan and Xray to find out if there is any organ involvement but she has painful hips, ribs and right shoulder. Her breast cancer was ER+ and so we are hoping this is the case for the bone mets, but know there are also treatments available for negative types too. I just wondered if you could take a moment to list all the names of the treatments you have had from the start and how long you were on them for? I could read all your posts and write them down but my signal here is scetchy and my internet connection keeps going down!!
I hope you dont mind me asking you this favour, but I am moving mountains to make sure my mum gets the very best treatment she so so deserves and I am not afraid to ask for it (loudly if necersary!!)
I acknowledge that every person's cancer is different in its nature, but your story is exactly the same as my mums so having all the names of treatments that have been succesful for you can't harm.
Big thank you's, and congratulations for doing so well!
Anna x
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had been taking Xeloda, first ct showed regression, last ct showed liver spots and hilar lymph nodes no longer visible! oh so close to NED...
but... had two new mesenteric lymph nodes show up as probable mets; onc and I are wondering if the two new nodes were due to fever/flu I was just getting over... so, holding on the happy dance for now
taking a break from Xeloda due to hand-foot issues and neuropathy. skin on the soles of my feet turned blotchy brown (they looked dirty even though clean,) then skin started to peel off... due to the hfs and neuropathy (burning feeling in my feet and pain from walking), had decreased my Xeloda dose to 1000mg twice a day; onc is concerned the dose is too low. anyway, I am enjoying the break very much!
have been having nausea and some vomitting and a little diarrhea, after stopping the Xeloda (nausea started my off week, just before the chemo break,) dr thinks it may be due to Xeloda still in my system. luckily, compazine is taking care of the nausea
currently trying Aromasin while on my chemo break (one month break, then rescan and go from there.) had no luck with Femara before. getting the impression from what I've read that anti-hormonals don't usually work too well if you're PR-. Onc did say that as Aromasin is a steroid and thus structurally different from Femara, that it does sometimes work when the non-steroidals don't. Had bad joint pain and many other SE while on Femara, none so far with Aromasin.
Expecting to probably have to go to IV chemo after my break, most likely low dose weekly Paclitaxol, but hoping I am wrong- NED would be awesome! but if not, am hoping I can be approved for Abraxane as the SE seem much milder; onc says you can do much larger doses as a result
Funny thing, last ct scan... pretty sure my boyfriend was way more nervous than I was... for once, I felt as if I could handle good news or bad news (and I got both- ha!) hoping my scanxiety has disappeard for good! (along with those anarchistic, mutant demon cancer cells!)
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