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Weekly Taxol group

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Comments

  • blainejennifer
    blainejennifer Member Posts: 441
    edited June 2012

    Just started weekly taxol this morning, and my bone mets are starting to ache. Could this be the famous "tumor flare"? If so, go get 'em, Taxol!

    50 mg of Benedryl for premeds ensured that I snoozed most of the infusion.

    Wishing everyone the best,

    Jennifer

  • jpmomof3
    jpmomof3 Member Posts: 198
    edited June 2012

    Jennifer, I sure hope so, die cancer die!

  • hopeful123
    hopeful123 Member Posts: 78
    edited June 2012

    Susan- great to see you in this thread. Have been reading your posts on the monthly chemo thread as you guys were ahead of me. Glad to hear that the liver mets are responding.

    Jennifer- welcome

    Heading into the dreaded day 3 after Tx 2, hopefully the fatigue will not be to bad.

    My biggest SE has been mouth sores. Have to do magic wash three times a day to keep it under control.

    Was able to get work done yesterday and today, definitely more than I ever did when I was doing AC.



  • ccjj
    ccjj Member Posts: 26
    edited June 2012

    Susan- So happy the tumors are shrinking. Very much hope you can do the herceptin/tykerb and can avoid taxotere. Sounds like there may be another option for us Her2+ women out there, hopefully soon. Did you see the study they released about a month ago? There is another drug being tested. Believe right now they call it something like T1DM1. (I'm sure thats off, but it was something like that). Anyway, it was used in stage IV Her2+ in combination with Herceptin. Apparently the results were impressive. Works like a bomb on exsisting tumors without disrupting healthy tissue. Few side effects. Anyway.. believe the FDA is looking at fast tracking approval. I hope its as good as the study showed and avail soon.  

    Ladyfighter- I believe my eyebrows/eyelashes came back within 2-3 weeks of losing them. My eyebrows came back super thick. I loved them. Now though they seem like they are back the way the were before bc. 

    I'm still doing herceptin every three weeks, so I am not totally done.  What I find now that I'm 4 months out from taxol is that I'm not as obsessed about BC. I can go a few days or so and not think about it. Some days it almost feels like it happened to someone else. But then I am back at the Onc for herceptin, or plastic surgeons for phase 2 of recon and I feel like it will never end and get a little bitter. Other days I feel positive and ready to move on, and others I am pretty sure it has thrown me into some kind of mid life crisis.  BC super sucks.  Hang in there everyone. You will get through the taxol and it is so much better once its behind you. 

  • Sissydi
    Sissydi Member Posts: 183
    edited June 2012

    Thank you ccjj, that's encouraging! I wonder if the study your referring to is the Aphinity study. I'm part of that one now.

  • Sissydi
    Sissydi Member Posts: 183
    edited June 2012

    Anybody have bladder issues on Taxol? I have felt all week like I'm getting a bladder infection, with pressure and frequent urination. Can this be a side effect of Taxol?

  • ccjj
    ccjj Member Posts: 26
    edited June 2012

    Sissydi- That Aphinity trial is exciting also.  Its great to see so much progress in Her2+ BC.  I looked up the trial I was referring to.  I cant find the name of the trial, but found the info.  The drug is currently called TDM1. The study only included stage IV patients, which is how herceptin started out. The study drug was given with herceptin. Supposedly there are stories from the study such as a patient given 6 months and is doing well 12 months later, with scans showing greatly reduced tumors.  If you google "TDM1 and Herceptin study", you will see the details. Sounds very promising.  Lets all keep our fingers crossed.

  • jpmomof3
    jpmomof3 Member Posts: 198
    edited June 2012

    Sissydi, that sounds it could just be a UTI. Did you get checked or ask you MO? You might need an antibiotic!

  • floridatworeds
    floridatworeds Member Posts: 5
    edited June 2012

    Hi,

     Had allergic reaction to Taxol, so remove from my treatment. Herceptin went much better. Feel good no side affects as of yet. Doctor plans to change chemotherapy to something else, keep everyone updated. Sorry to hear you having tough time with it, hope it gets better. Sending prayers.

  • floridatworeds
    floridatworeds Member Posts: 5
    edited June 2012

    no I am in New York just a username

  • ladyfighter
    ladyfighter Member Posts: 57
    edited July 2012

    Floridatworeds, so sorry about taxol :( hope other one will work!



    My UTI seemed to be better! And my WBC on thurs was good so had #6 tx with no problems until yesterday had dizzy/vertigo spells again! So annoying! And was so hopping high from premed steroid. Today felt so much better!!! Feel normal today! We shall see how tomorrow and forward will be! Cause my SE is roller coaster with dizzy and tireness. No pains, I think vitamin b6 helped. And I also take Effexor faithfully for 7 years.



    I'm dreading about radiation. Haven't met any RO yet. My MO feels I should get it. How can I have radiation if my surgeon removed all of tumor during lumpectomy with clear margin?



    Anyone have ideas how soon We all must have radiation after chemo ends? I wanted to go away to NY.



    Sissydi did you see dr about your UTI? U need antibiotic. I don't know if mine caused from taxol or from lovemaking?



    I got DVD movie called living proof about herceptin probably will watch tonight or tomorrow. Will let you know if it is good!



    Ccjj, I totally get what you mean. Often times I just sat there and say myself wow Im in this journey!? Sometimes feels surreal. I always felt "it is them not me " but it is me going through this like you guys. All this happening makes me feel stronger and more aware about BC more than before I was diagnosed. I do have some fears sometimes about recurrence, etc. But I just take one day at a time. And I also think my Effexor helped greatly for me.



    Big hugs to everyone here xoxox

  • Sissydi
    Sissydi Member Posts: 183
    edited July 2012

    Lady fighter, I see my onc Monday for tx #6, so I will mention it to him then......it's not as intense as a uti, just irritated.....could be from sex as well. I will have him do a urinalysis just in case!

  • Pkate
    Pkate Member Posts: 10
    edited July 2012

    Hi Ladies,

    I am in the April/May Chemo 2012 group where someone told me about this group.  I was just switched from DD Taxol every other week to weekly Taxol.  Doc said it would help reduce the chance of neuropathy from being permanent.  She and the nurses all said that the side effects would be less too.  However, I am finding that I do not have as many up days between treatments.  Crashed 48 hours after treatment on Wednesday (just like with DD) and still no taste and energy and heading back in for next treatment on Tuesday (early because of the 4th).  Also now have 5 more treatments instead of the one I had left.  I was excited at first because I thought I'd feel better but now it looks like I have 30 more days of down time.

    I'm wondering if I should just go back to the dose dense for the last treatment.  Anyone else switched from every other week and have these thoughts or side effects.

  • hopeful123
    hopeful123 Member Posts: 78
    edited July 2012

    Pkate- sorry to hear about SE. I just finished TX2 and heading into 3. I crash on day 3 and 4. But seem to be better by day 5. I would say my, best days are the 2 days after TX. I was a little down just like you thinking about the 10 more weeks to go!

    Sissydi- I find that I have to urinate more often after I started chemo. I was thinking it might be because I am forcing myself to drink more water. Hope it turns out to be nothing for you.

    Lady fighter and Sissydi- good luck with 7.



    My mouth sores are better today. I did get stomach cramps on day 3, and I am unable to eat anything even slightly spicy. Did any if you have ths problem?

  • Sissydi
    Sissydi Member Posts: 183
    edited July 2012

    No, but I've definitely noticed bloating!

  • jpmomof3
    jpmomof3 Member Posts: 198
    edited July 2012

    Hi ladies!  I am PF taxol 1 week now.  The steroid effects are gone and i feel pretty good.  I am hoping it is all up from here.  It will seem a little strange to NOT have to go to the big girl chair this afternoon.  I know it might sounds a little weird but I may actually kind of miss the routine.  After all I got out of work early, got 2-3 hours of peace and quiet for time to snooze, play games or read.  I never get that at home!  But I think i will adjust.  I did it for 20 weeks, it was part of my life for a while.

    I have my post chemo MRI and mammo today to see if all this stuff worked.  Keeping my fingers crossed.  Will update.  I updated my avatar to a pic from yesterday. The low light makes it look like I have more hair!

    Best wishes to all of you.  Minimal SE's.  You get through that day three blahs soon enough!

  • Sissydi
    Sissydi Member Posts: 183
    edited July 2012

    Praying for you jpmom......your tests will come out fine :) your hair looks like its taking off! I keep petting mine, lol....

    I'm in the chair for my 4 hour today.....Taxol #7, Herceptin #3! I've gained 8 lbs.....not happy about that.......been walking at night, I think I need to eat better. I've been "rewarding" myself with yummies lately :)

  • ladyfighter
    ladyfighter Member Posts: 57
    edited July 2012

    Pkate, I am happy with my weekly taxol/herceptin, feeling more normal than DD A/C that I had before. Good luck!

     Sissydi, yay for #7!!! almost almost there! how is your UTI? better? or getting culture today? keep us posted! I do feel bloated too!! tried to drink lots of water and fluid, no luck. Good luck today! my hair is growing and growing! I kept playing with it, rubbing and looking at it in mirrow upclose all the times lol

     Hopeful, no i dont have any problem with food, stomach, etc with taxol. But my previous DD A/C was awful! couldnt eat, not even a sip of a drink! horrible!

    jpmom, you look great!! I know what you mean, I wonder how I will feel when journey ends, feels funny not going to infusion room anymore, etc. because it feels like routine to me now. Thank god for my Effexor, i wouldnt get anxiety or anything :) Good luck!!

     Tx 6, day 5, i feel so so, little muscle achy on bottom of my backside. Little dizzy. no tingle feet/hands (whew). finger nails two of them flatten out but still there. hair still growing. eyebrows and eyelashes barely there still. I slept 14 hours yesterday. 

    I am meeting my MO this Thursday before my #7 and bloodwork after not seeing him for 2 weeks he was on vacation. We will see what he says about my UTI, dizzy, etc. But I feel good enough to keep going!

     Watched Living Proof last night.. Oh gosh! very very very interesting! I recommend anyone to watch it who has HER2+ but anyone interested to know about HER2+ should watch the movie too. You can get dvd anywhere walmart, best buy, or even download from online. 

    Hope everyone is having good day today!

    Hugs xoxox 

  • Sissydi
    Sissydi Member Posts: 183
    edited July 2012

    My onc didn't think much of my bladder/ bloating complaints......he told me to keep hydrated, and stay out of the heat, so I won't worry. If it continues, ill go see my gynecologist.

  • jpmomof3
    jpmomof3 Member Posts: 198
    edited July 2012

    Hi guys, after about four hours in the breast clinic today, i got good news. They kept me waiting two hours just to go back to get the mammo. I was late for my MRI appointment but they did it. The I got a scare when the mammo part of the clinic called while i was just about to start the mri and said I needed to come back up there and get an unplanned ultrasound. A lot of things ran through my head during that MRI. When I got there to do the ultrasound, luckily they got me right back and said that because my itty bitty titties are so dense they just didn't get enough info on the mammo and wanted to do the ultrasound too. The radiologist talked to me afterward and said that on ultrasound and mammo they couldn't see the invasive part of my cancer anymore. The lymph nodes (one of which I already knew from the biopsy was positive) looked more normal too. The MRI results will be available tomorrow but so far it looks like the invasive part of my cancer has regressed to the point where they can't see it. And if a 2 cm mass has disappeared I can only figure all the cancer in the nodes and in any other sneaky little spots has died died died. Yay chemo! Makes me think it was worth all this hell I just went through.



    So I am one week post chemo and 3 weeks pre surgery. I am looking forward to the next step in being done with all this.

  • Sissydi
    Sissydi Member Posts: 183
    edited July 2012

    Wow! So happy to hear this jpmom! I forgot, are you doing a MX or a lumpectomy? I had my surgery first in January, a mastect on the right side.

    Today my onc said I will get 3 weeks off in between my last Taxol and rads.... Going on a short vacation with my hubby to celebrate. So ready to get in the ocean, and lay on the beach..... The only way I can handle the hot summers here. I heard you aren't supposed to swim in chlorinated pools during rads.....I'll double check that one with my rad onc when I finally meet him. I can only do one treatment thing at a time!

  • lollypop59
    lollypop59 Member Posts: 7
    edited July 2012

    hi lady fighter,

     i will be not having rads, already had that a oringinal dx in  sept 2010, but had the rads march 2011 for three weeks, just having the  taxol on my 19th this week, plus herceptin, my onc is keeping me on this for has long as i feel well. i have another ct scan in two weeks.

                                  lollypop x

  • jpmomof3
    jpmomof3 Member Posts: 198
    edited July 2012

    Hey sissy,



    I am hoping for a lumpectomy. 20 days and counting. Then rads. Have a great time at the beach! Man that sounds great, I would love to get away too. I hope you can forget about this breast cancer stuff for a while. Be careful in the sun though. You might want to keep the area that you are getting radiated completely covered. The less damaged your skin is before rads the better.



    I am still waiting on the MRI results, but am not so worried since I got the good news yesterday on the ultrasound. 8 days PF taxol. I ran a mile today! First time in over five months. I might pay for it later but it felt good!



    I am going to go shopping for some bras to wear after my surgery and some big girly earrings. I am hoping to start going topless in a couple of weeks or so.



    Hope everyone is doing well with your side effects. This is the first Tuesday in 12 weeks I haven't had the steroid flush and grumpiness. Yay!

  • Pkate
    Pkate Member Posts: 10
    edited July 2012

    Great news jpmomof3. Hopefully we will all have good news to report and say that chemo was worth it.



    I'm in chair getting I've fluids instead of chemo because my WBC is too low. I knew that there had to be a reason I felt so bad after switching to the lower dose weekly. Mow hubby and I can celebrate his birthday on Friday and send ds off to scout camp on Sunday I wanted to look and feel good to spend time with son so he wouldn't remember me just lying on the couch. So this extends tx into August...

  • Sissydi
    Sissydi Member Posts: 183
    edited July 2012

    Well be here pkate!

  • gonegirl
    gonegirl Member Posts: 1,022
    edited July 2012

    jpmom, congrats on the good news.

    blainejennifer, after each dose of Taxol, my liver would hurt. I took that as a good sign and that the chemo was doing its job.  turns out it was.

    as much as the side effects bug me about Taxol, i think it was totally worth it. the amount of tumors in my breast and on my liver were pretty impressive.  the chemo knocked all of that back about 90%.  now i have two 1 cm lesions on my liver and what might be scar tissue in my breast since it hasn't moved at all in size for a bit.  for that i am grateful.

    so baldness, loss of lashes and eyebrows, bad nails, and neuropathy/swollen ankles aside, i am glad to be alive and am very grateful that my nasty schtuff was so responsive to the Taxol.

  • jpmomof3
    jpmomof3 Member Posts: 198
    edited July 2012

    Pkate, sorry you had a bump in the road of your treamtent but at least you know what the problem was.  I definitely think the chemo was worth it especially after seeing proof that all this hell i just put myself through did something.  Hope you guys feel better soon!

  • Pkate
    Pkate Member Posts: 10
    edited July 2012

    jpmomof3 - Hey, you ran a mile!   That is the best sign of it working!

    Thanks, Sissydi - good to have company on the bumpy road.

  • hopeful123
    hopeful123 Member Posts: 78
    edited July 2012

    Had Tx 3 yesterday. They reduced my steroids from 10mgs to 4 mgs. They think my GI issues are probably due to the steroids. I was worried but did well, no problems. The Taxol is definitely much easier than AC upto now.

    I couldn't agree more with everyone about chemo. Especially for us her2 positive folks we just have to I whatever it takes to combat the beast.

    Jpmom- great to hear it has shrunk. I Did BMX with DIEP and it took 4 weeks to recover wasn't too bad. Lumpectomy will be a breeze. Love your new avatar. Do keep updating it.

    Pkate and Sissydi- I go on till Sep 4 th, if everything goes fine. So will be aroun for a while....

  • jpmomof3
    jpmomof3 Member Posts: 198
    edited July 2012

    Good morning ladies.  I am 10 days post final taxol.  My energy levels are already improving.  Mostly i think due to being able to sleep a little better now that i dont have large amounts of decadron in my system.  Its getting better day by day.  Any tingling i had is long gone now. 

    best wishes to those in the chair and dealing with side effects today.  There is light at the end of the tunnel.