How Long on Abraxane????

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kirby
kirby Member Posts: 198

Today I had treatment #15 of Abraxane. I have liver and bone mets. My last PET Scan on 4/10 showed I was in partial remission, with most of the bone mets gone and liver tumors shrinking, but still there.

 Initially my oncologist said I would be on Abraxane for 6 months (18 treatments). But, today he said I would stay on it until I go into complete remission, it quits working, or when side effects are not manageble. This has put me in a tailspin. I understand the concept, but being on chemo with no end in sight is very depressing to me.

So can anyone give me any insight on how long you have been on abraxane (or other chemos), and if you ever got to take a break??

xoxo

Comments

  • MJLToday
    MJLToday Member Posts: 2,068
    edited May 2010

    My onco said I would be on it until it stopped working.  I totally agree, it's so depressing.  I know others here have been able to go off it if/when they go NED, with their oncologist's blessing.

    Of course, we can always refuse treatment / take a chemo break at whatever point we choose.  I will look forward to other's responses, with hopefully more progressive oncologists than mine.

  • Cathy-CA
    Cathy-CA Member Posts: 686
    edited May 2010

    I'm still on my first chemo since being dx'd with Stage IV.  However, what you are hearing seems to be consistent with what I'm being told by my oncologist.  I had a scan in April after three months of treatment and that looked good.  I finish the planned course of treatment in June and she will scan again.  If things still look good, then she will stop chemo.  If only moderate progression, we will continue with the same treatment.  If major progression, we will switch.   I'm triple negative, so chemo is the only option available.  She said it used to be they would keep people on a low maintenance dose, but are now leaning towards chemo breaks if NED.

  • bottkota
    bottkota Member Posts: 285
    edited May 2010

    I had a really good scan just a couple of weeks ago and my onc was the same if we can get to "remission" we can take a break.  I have been on chemo (Abraxane, gemzar and avastin) for 6 months and am totally ready for a break.  I will have another scan in 4 weeks and we will determine from there what to do.  He told me that is the next scan looked good, he would like to do a PET scan to see what that shows, retest my tumor markers and then decide if a break is possible.  Keep your spirits up and don't give up HOPE!!!  I did have a small break in March due to some QOL issues and that really helped me to mentally get back in the saddle and kick this crap to the curb.....I think it depends on where you are at with your mets and what your onc feels comfortable with.....

  • kirby
    kirby Member Posts: 198
    edited June 2010

    Hey Ladies,

    Update from my last post about being on Abraxane/Avastin.

    I had a CT scan last week and got results today. All my liver mets have decreased in size and no new ones. Of course I am happy, BUT since I am having such a good response my onc wants me to have 9 more treatments!!! Wow, I just got through with treatment #18. Can a body really take all this Sh$t? Fortunately, my side effects have been pretty manageable, but, really I wasn't expecting to have to keep going. Is this realistic??? Really wanted to have my hair start growing, but looks like will have to wait for awhile :)- I know, it could be a whole lot worse, but would like your input.

    xoxo

  • pharmgirl
    pharmgirl Member Posts: 57
    edited June 2010

    Hi Kirby,

    I will be starting Abraxane on July 2 and my oncologist at MDA said the same thing - that I would be on it until it stops working.  She did, however say that I could get chemo breaks again in the future and other options for treatments, etc.  Anyway, here's my experience and advice on whether or not to stick it out for 3 more rounds:

    I was diagnosed with Stage IV breast cancer from the get-go back in August and started my chemo in September.  I started out with a 5.9 X 5.8 cm size liver lesion and a few much smaller ones.  I did 12 weekly infusions of Taxol which got it down to 4.3 X 4.2 cm and then went on the FAC combo for 4 treatments every 3 weeks.  I finished all that, and my scan in March showed that my largest lesion was now 2.4 X 2.3 cm and a few of the small ones were gone except two tiny ones.  My oncologist decided to give me a break and I went on tamoxifen for the last 3 months.  My latest scan showed that I was pretty much stable (my large lesion maybe grew 1-2mm)  I was really happy about that, but my oncologist wants me to start chemo again.  I'm hoping that a few rounds of Abraxane will do the job and I will be NED.  My point to all of this is that I do feel that if I did the Abraxane right after the FAC, the lesion would be smaller or gone by now.  BUT, it was nice to have the 3 month break - went to Hawaii, Las Vegas, etc.  My hair's really growing back in and I was just starting to feel like I had my life back.  Just my opinion, but I would try and tough it out for 3 more rounds if you can.  Then you can really get a nice break! Again, I really enjoyed my break, but I'm thinking I should have pressed on for 3 more months after the FAC combo - I could be NED right now instead of starting chemo again.

    By the way, do you have any advice or suggestions for me with the Abraxane?  With Taxol I had the bloody nose thing, weird skin issues, and neuropathy at week 9.   Not looking forward to breaking out my wigs again in this Houston heat!

  • kirby
    kirby Member Posts: 198
    edited June 2010

    Hi PharmGirl,

    thanks for your thoughtful post. I know in my heart you are absolutely correct, I need to continue on with the Abraxane. You know how it is though, just wanted a break from chemo and cancer. I am the type that needs some type of goals, so I will just set my sight on finishing this up in September and hope I do ok on the additional treatments.

    I think you will do fine on Abraxane. Only problems is some neuropathy, but taking a lot of supplements and seems to help. Did a month of lyrica when it got bad. My nails ok, I keep them short, have a manicure every other week. I am a little tired, but considering not bad, and of course this heat in H-town doesn't help, especially with wig :)- My eyes are dry lately, need to put drops in, but too lazy. Big complaint is the hair issue, but learning to deal with it again.

    I did taxotere back in 2005 and the abraxane is much less toxic. Only a little nausea, I get aloxi with my infusion. I don't even have a port, and so far, so good.

    If you have any other questions please send me a pm. Good luck, and let me know how is goes for you!

    xoxo

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2010

    Welcome to the dilemmas club. We're struggling with almost similar question...

    http://community.breastcancer.org/forum/8/topic/754256 

  • Reneepals
    Reneepals Member Posts: 2,196
    edited June 2010

    Well tomorrow starts my first day of Abraxane & Avastiin. I don't feel down or depressed.  I just feel like, ok let's get this party started. I know the hair is going to be a big issue.......again. What a sucky s/e. I am just praying the nausea & vomiting don't creep up on me. I had terrible neuropathy with Taxol, we are tring to keep it at a minimum with the Abraxane. Life is going to change again. Kirby can i please ask what supplements you are taking fgor neuropathy? Did you ladies have weight gain with Abraxane?

  • Melanie36
    Melanie36 Member Posts: 110
    edited June 2010

    Continuing my 7 th round of Araxane tomorrow (3rd round 7th injection??) Anyway, SE include tingling in hands and feet, mild nausea and hot flashes. No weight gain for me.

    So far this has been the "easiest" (I use that term very loosely) chemo for me. Just got CT scans back and although no change in the liver, the breast mass is growing so now he wants to switch to AC.

    Melanie

  • kirby
    kirby Member Posts: 198
    edited June 2010

    Hi Renee,

    I take acetyl L-carnitine 400mg and alpha lipoic acid 200mg- twice daily and B complex - twice daily for the neuropathy. I have just had a little, got on lyrica for one month when things got a little worse. So far it has been ok. I also take biotin for hair/nails/skin.

    Yeah, the hair part is really sucky. Once was enough for me, and the second time was almost worse because I really have no idea when I will be off chemo long enough for it to start growing back. It has grown a little, so I am not bald, but pretty close :)-

    I get aloxi with my infusion and nausea has not been a real issue, if I get to feeling yucky I take phenergran. My taste buds are shot, and this time i have a sweet taste in my mouth, so use a lot of baking soda and biotene toothpaste. So after 18 of these I feel I have done pretty well, and it has knocked the socks off the damn liver mets. But, can I go 9 more, I hope so.

    Good Luck tomorrow! Let me know if you have any other questions. I hope the A/A kicks A$$ for you.

    xoxo

  • jleigh
    jleigh Member Posts: 194
    edited June 2010

    hey there, i start abraxane in two days. they decided to lower the dosage so i can continue on stupid radiation treatments for 15 days to the spine - painful. then they will bump it up some and maybe add some avastin. (had two of those when xeldoda failed me)  i just got my wig today, blah. but it actually looks okay.  ordered a ponytail - look like bret michaels. so im ready. a little nervous about the chemo but they keep telling me its nothing like i did 5 years ago (TAC) so . . . . . .guess i gotta do it.  it does suck not knowing how long i will be on it or when ever i will see my blond hair again.  please keep up your side effects with me.  thanks for all the support. and i will be thinking of you all.

  • Reneepals
    Reneepals Member Posts: 2,196
    edited June 2010

    Thanks for your quick response ladies! I am like a little kid this morning a grumpy little kid. I just apologised to the hubby for calling him an air-conditioning miser. He wrote back "Your entitled" and leave it on 65 all night long if you want. LOLOLOLOLOLOLOL. Kirby, I am going to write down all the supplement info and run it by my onc. I  have a bottle of prochlorperazine 10mg for nausea. I forgot about the biotene tooth paste, I have to pick up a tube. What about AYR for the nasal passages? Are you have an issue with them being dry?

    Jliegh. I will definitely post here to share information. I hope they get the pain under control for you.

    I bought a bunch of beautiful scarfs. I am going to get a wig once all the locks fall off. I have a huge head! I'm going with a lace front wig. The ladies at work are in shock, but they have been great. I don't mean to write mindless chatter I am just a little freaked out.

    Hugs ladies

  • traciedg
    traciedg Member Posts: 9
    edited June 2010

    My Onc put me on 9 treatments of Abraxane, than the ct scan, now she has okay'd a break until August, the ct showed some small growth on Abraxane to my liver and lung mets.  She told me she will now have to re apply for Abraxane and doesn't know if it will be approved because of the growth.   I would like to know how long should a drug be used before you can tell if it is working because so far I have switched every 3 months.  Does this seem normal?

  • Reneepals
    Reneepals Member Posts: 2,196
    edited June 2010

    Traci,

    My onc told me a minimum of 6 months and at that point we will decided on more chemo, or a chemo holiday or try another A.I....... 3 months does not seem like a long enough time for chemo or any other treatment for that fact. IMHO I would have stayed on it longer before taking a break.

  • Reneepals
    Reneepals Member Posts: 2,196
    edited June 2010

    Have you ladies experience pain after getting abraxane? I was fine on wednesday. Yesterday all the way up until 3:30 in the afternoon, then bam excruciating pain. The Percocet isn't touching it.

  • Lynn1
    Lynn1 Member Posts: 2,141
    edited July 2010

    Hi...I knew if I searched long enough I'd find something on this! Thanks Kirby for starting this - very timely for me now!  Like you I was wondering just exactly how long I was going to be on this!! 6 months sounds like a looong time, given my only experience with chemo was A/C and that had an "ending" date.  I'm not sure how I like the idea of never-ending chemo, but I guess I have no choice.  So some of you have had your hair start growing back while on the chemo?  (I had this happen with my last chemo so I know it's possible, but just checking on this particular one.)  Thanks!!

  • kirby
    kirby Member Posts: 198
    edited July 2010

    Lynn,

    I lost my hair about 3 wks after first infusion of abraxane and while I have had some growth, I call it "alien" hair. It is very thin, sparse, with several bald areas, not a very good look. Basically, I am bald, but it is nice to have a little coverage.

    I had abraxane #21 this week with zometa. I get Avastin every 3 wks. This is the first time I have experienced a lot of body aches and some nausea. Also my nose is bleeding quite a bit from the Avastin. I feel miserable. I have gained weight, but really have not been eating very much so I guess it is bloating from the chemo. I have those weird zinger pains through out my body. Not a happy camper. Also got a rash this week after chemo, and don't know if it is connected to all this chemo crap.

    So basically I feel ugly, achey and crappy :)- Hoping this too shall pass. 

    xoxo

  • Lynn1
    Lynn1 Member Posts: 2,141
    edited July 2010

    Thanks for the info Kirby.  I'm so sorry about your SE's with this. :(  I am so not looking forward to doing this even though I know it's necessary.  We need to start an Abraxane/Avastin Club thread on here - seems there are several on it or soon to be on it. ??

  • lydraimom
    lydraimom Member Posts: 26
    edited December 2011

    hello everyone,

    any updates? I am going to have 34th Abraxane & Herceptin coming Wednesdays. it's been a while. hope hearing from you. thank you.

  • cmhartley
    cmhartley Member Posts: 1,091
    edited December 2011

    Hey there Kirby,  I am sooo very glad to see your post.  I have been thinking about you alot, wondering how you have been doing and worrying because we haven't heard from you..but then again I have been on again/off again here.  I can't answer the question on the Abraxane but can tell you that my onc did inform me when I started my taxol/avastin in May that I would basically be on itm, provided it was working, until either my cancer became resistant or cannot stand the side effects.

    Keep in touch and PM me if you'd like.  I hope you continue to do well.

    Cat 

  • Canchaser
    Canchaser Member Posts: 216
    edited December 2011

     I have been on Abraxane for almost 4 months, have scan tomorrow. My question is, if I am NED after scan, will I continue on maintance abraxane or will I still have full dosage of abraxane? Also, anybodys hair come back while on abraxane?

    Luv to all! Amy

    PS, Kirby, hope you don't mind if I asked a question in your post.

  • lydraimom
    lydraimom Member Posts: 26
    edited December 2011

    Hi,canchaser,

    Good luck on your scan. I had 2 Ned scan, my onc started cutting Abraxane after the 2nd good scan. , and i can have an off time more frequently, from 4th week off to 3rd week off. But, I won't call it a maintain one. I never really lose my hair completely like when I was on AC last time.

  • sparks55
    sparks55 Member Posts: 2
    edited March 2019

    Kirby,

    Your threads on Abraxane are very informative as are all others. I feel I am not alone. I completed 6 treatments of Abraxane and onc wants 12 more. I know abraxane is the last resort, I miss my hair, but love the uncomplicated mornings going go work. This journey is a long one, wish I had the energy to do more, walking , hiking , shopping etc . My co-workers/friends are clueless, I emailed them this blog . God. Ble

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