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Halaven - Day 1

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Comments

  • Nan812
    Nan812 Member Posts: 224
    edited July 2017

    hi ladies....i've been on halaven since june 9th so this is my off week right now....i'm very tired on this chemo but i cant be sure its all the fault of the halaven, i am also taking a parp inhibitor called lynparza ....its a daily pill...my hair has gotten too thin to look nice so its buzzed now, that part still gets to me...on the up side my taste buds havent changed except the day after the infusion is seems like im burping eggs and i didnt eat any , happens every time, hoping it will stop but not near as bad as that metal taste from last time....all my big scans are at the end of the month so i will update again then......big ((hugs))

  • stagefree
    stagefree Member Posts: 360
    edited July 2017

    thanx all for the support! Taking taxotere today :/

    Hugs

    Ebr

  • babs6287
    babs6287 Member Posts: 1,619
    edited July 2017

    Had my first infusion of my second round of Galaven last night. All went well except getting a vein on me is not easy!! My TMs have shot up so very concerned!!!!!

    Babs

  • cling
    cling Member Posts: 263
    edited July 2017

    starting the off week of the 3d round. Taste is back. I also got b-12 and 2 iron infusions to boost my blood count. They seem to help a bit on fatigue but still tired all the time. Onc decided to postpone the scans after 4th round because her vacation. I am fine with the delay. Just wish the diarrhea within 30 minutes of each meal will lessen on the off week.

  • Nan812
    Nan812 Member Posts: 224
    edited July 2017

    cling....sorry to hear of your tummy troubles...im still having the opposite problem....funny how it can kick each one of our butts (lol) in all kind of new and inventive ways.....hope your feeling better soon

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited July 2017
    Well, tomorrow is Halaven D-day for me. I guess I'm as ready as I will ever be. I'm really going to miss my hair, which is kind-of ironic since my hair is quite thin and nothing to write home about. But is do like my short haircut that I've had for 2 years now. Will be looking for a wig soon.

    How are you gals feeling?
  • babs6287
    babs6287 Member Posts: 1,619
    edited July 2017

    So, I was supposed to have my second treatment of Halaven in my 2nd cycle tonight but I got a call from my MO saying that there is a study she thinks will be good for me. And, that if I want to go into it, I must be off all treatments for 3 weeks so maybe I shouldn't do the chemo today. I am getting scans tomorrow anyway (due to my rising TM's). If they show that the Halaven is working ( doubtful) I can always restart again. If it shows progression, then this study might be applicable. I will know on Monday IF I will be accepted into this trial-you must be accepted. Here's some info-has anyone heard of this study? My concern is that it is a phase 1 study. And yes, I do have the PIK3CA mutation

    Official Study Title for Internet Search on http://www.ClinicalTrials.gov: A Phase I, Open-Label, Dose-Escalation Study Evaluating the Safety, Tolerability, and Pharmacokinetics of GDC-0077 as a Single Agent in Patients with Locally Advanced or Metastatic PIK3CA-Mutant Solid Tumors and in Combination with Endocrine and Targeted Therapies in Patients with Locally Advanced or Metastatic PIK3CA-Mutant Hormone-Receptor Positive Breast Cancer.

    Babs

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited July 2017
    Hi Babs - I will pray for wisdom in making this decision. I'm sure it's not an easy one. Does your MO think that you have been on Halaven that long to determine if it's working or not? After just starting yesterday, my doctor said it may take a bit if time to kick in and my TMs may actually rise at the beginning due to tumor flare. Glad you are doing scans to check it out.

    I wish I knew more about Phase 1 trials and what they mean. Please keep us informed of your decision. Sounds like your MO is on top of your potential treatments, which is very good.
  • Nan812
    Nan812 Member Posts: 224
    edited July 2017

    hi babs, are you considered receptor positive even though you have one neg. in there?.....and you are in week five from when you started including your off week?....sounds like some are still getting chemo along with it so nothing much to lose to add something to it....your doc must see some promise in this because she called and didnt wait for you to drag your butt into the office....so find out if you will still be on some kind of chemo either way, get your scan results and im sure the decision will be clear for you.....good luck my dear

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited July 2017

    Hi all - had my 1st round second infusion yesterday. From 1st infusion last Thursday, I noticed I was fine that day, got a fever of 100.6 by Friday night, felt my worst on Sat and Sunday. Just overall fatigue and stomach did not feel well. Very little appetite the first few days. Also, a constant metallic taste in my mouth which is miserable. Fine when I eat but it comes right back afterwards. Some constipation then diarrhea - both have been manageable. Did not have nausea, which I was thankful for. Looking forward to getting through this week and then on to my off week next week. Yea!

    How is everyone else doing? Cling, Nan, Babs?

  • babs6287
    babs6287 Member Posts: 1,619
    edited July 2017

    I never had my second treatment of my second round of Halaven. I'm going into a trial of GDC0022 which targets my mutation. It consists of taking pills. I'm hoping it will work wonders but if it doesn't I'll go back on Halaven because scans showed it WAS working!!!! I'll probably start a new thread about this trial over the weekend.

    Hope you all do well on Halaven and that it works to keep the monster within us at bay!

    Babs


  • cling
    cling Member Posts: 263
    edited July 2017

    Babs, I read in other thread that you have good results from your trial, congratulations!

    Southern, I am still on Halaven, will get the second shot of 4th round next Monday, then go for CT/bone scans the following Monday to see if Halaven works on my "newly found ILC" or not. I had IDC with lobular features when first dx in 2010, but was never told I had ILC before this progression was found in May.

    I do lose my taste bubs the 4 days after infusion, then will regain it on the day or two before next infusion. Diarrhea is my main problem, but I prefer D than C at any time! BTW, I think my hair is finally given up and coming out in chunks after 10 weeks on Halaven. My wig is ready!

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited July 2017
    Babs, best of luck on your new trial - we will be rooting for you.

    Cling, thanks for your update. I'm not feeling very well this weekend, especially today. Just overall blah. Stomach upset a bit but no nausea. Have had the big D on and off today. Hoping tomorrow is a better day. Hopefully will be buying a wig this week, as I want to be ready.
  • Nan812
    Nan812 Member Posts: 224
    edited August 2017

    hello....just checking in....i just seem to be really tired, like someone just push her she fell asleep in the middle of lunch..lol....its that bad right now....i know its not my brain cuz i just had a (semi-) clean scan with just a flattened out bit of old tumor left...yes only 1 from 2015 out of 7 all together....so i've been getting procrit with my chemo cuz MO says the chemo and the parp-inhibitor i take are both depleting my blood so thats probably why i'm so tired.....i do CT scans on friday and i'll let you know how well its working

    big hugs

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited August 2017
    Well, my sister shaved my head today. My hair was falling out so much these last 2 days. I took my shirt off last night and tons of hair on the back of my shirt. I just couldn't stand it anymore. My hair has always been on the thin side and as of this morning, it looked so bad. When I ran a comb through it one time, I bet I had 15-20 strands come out. Was very hard to do - 3rd time losing my hair. Ugh.

    On a better note, I'm on my off week of the 1st cycle and I feel pretty well. The farther I'm out from my last infusion, the better I feel. Truthfully, makes me not want to start cycle 2. (Haha - I wish!)

    Nan - let us know how your scans come out.

    Cling, how are you?
  • cling
    cling Member Posts: 263
    edited August 2017

    This is my off week of the 4th round, taste and appetite are back. My infusion is on late Monday afternoon. So my taste and appetite are usually gone Tuesday through Friday with diarrhea after each meal. Just did CT scans and am waiting for two more hours to go back for bone scan. After finding my usually gradually increased TM did a big jump last month, I don't think Halaven is working on the progression on my Gerota's fascia. A bit sad, but will have to wait for appointment with Onc next Monday to find out what the scans say.

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited August 2017
    Oh Cling, I certainly hope that is not the case.

    I'm personally wondering why my MO put me on Halaven - I think I've only seen one person on this forum who has been on this drug for any length of time.

    I'll do my first labs early next week, so it's too early for me to tell anything.
  • Kandy
    Kandy Member Posts: 424
    edited August 2017

    Wanting to join in with you ladies. My MO told me this morning, I will be starting it next Tuesday. Any advice would be appreciated.

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited August 2017
    Hi Kandy - welcome to the Halaven thread. I've followed your own thread, so I feel like I know you!

    I just started Halaven a few weeks ago, so only been through one cycle (2 weeks on, 1 week off.) I'll be starting my 2nd cycle next Tuesday, so we can go through it together. First of all, the infusion itself is easy. I have premeds for 20-30 min, then the Halaven is in a shot that they push through my port in just a few minutes. Then I have them give me a bag of saline - more fluids is always good for me. Total time is about 1 hour.

    I have felt well on chemo day and the day after. For me, Day 3 and Day 4 I didn't feel well and were mostly couch days. (Day 1 being chemo day.) Just don't feel well overall, tired, and not much appetite like I feel when I'm sick. For the first infusion of cycle one, I did get a fever on the night of Day 2 but it went away with one dose of Tylenol. I also get this terrible metallic taste in my mouth that has lasted the whole first cycle until a day or two ago. I think this is why I didn't feel well either, as that metallic taste affects everything and was constant. I have had this before on IV chemo, so it may just be my body. It's my off week now and the metallic taste has mostly gone away - thank goodness. I'm sure it will come right back next cycle.

    It's definitely not the worst chemo I've been on, but it has been an adjustment after being on easier meds (Xeloda and then Ibrance), at least for me. I'm hoping I'll get a little more acclimated this next cycle.

    Hope this helps!

    Hugs, Sheri
  • Kandy
    Kandy Member Posts: 424
    edited August 2017

    Thanks Sheri, that is awesome that you are one cycle in front of me, you can keep me informed as to what to expect next. Besides those 2 days, did you overall feel well except for the metallic taste? I remember that taste from my original diagnosis in 09. I absolutely hated it and found eating unbearable. I lost down to weighing 89?pounds. I wouldn't mind losing a few pounds cause the hormonals definitely made me gain it back, plus some. But I don't want to weigh 89 pounds either. Definitely not looking forward to that. I'm just eager to start something back, going without anything right now scares me to death. Today, I have found it difficult to stay awake. I sleep, wake up, then fall back asleep. So tired. I hope you are enjoying your week off. Keep enjoying the moment

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited August 2017
    Kandy, I would say every day from Day 5 through Day 7 got a bit better the farther out from chemo. Didn't feel normal, but did get out of the house some those days. I remember thinking on Day 7: "I feel pretty good today." Then I thought: "Well that's great as I have chemo again tomorrow!" Have loved my off week as I feel almost normal, except for the fact I'm trying to get my wig to stop digging into my head. Ugh. I'm trying to get a few things done this week since I'm feeling better. I don't plan much, if anything, on my chemo weeks.

    I hope you are feel more energetic after getting some rest today. I could stand to lose about 10 lbs that I gained with Faslodex. 89 lbs though - no - you definitely don't want that! I'm eating well this week, no issues. Definitely eating more on my off week as food just tastes better. Rest up and enjoy these next several non-chemo days before Halaven starts. 💕
  • Kandy
    Kandy Member Posts: 424
    edited August 2017

    Thanks Southernsurvivor, I appreciate all the info. So you start your second cycle on Tuesday and I start on Tuesday. Let's do this together, we can do this.

  • cling
    cling Member Posts: 263
    edited August 2017

    Just met w my Onc on the scans reports and she told me "you are o k" when she came in the room. She repeated it one more time, I finally realized the worry I had on the TM rising during the past two weeks are non-concerns now. Every report is stable, even ascites dimiished a bit. So Halaven is working, she sent me to the infusion for the next round of Halaven. BTW, after 12 weeks of Halaven, I still have just bearly enough hair covering my head 😛

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited August 2017

    Cling, that is wonderful news! I'm so happy to hear Halaven is working for you. Your hair is better than mine. After just a few weeks on Halaven, my hair on the top of my head just started falling out in droves. Having thin hair to begin with, I had to shave it and start wearing a wig. All the hair falling out was driving me crazy. Ugh.

    See MO tomorrow and then on to begin cycle #2! Here we go again....just when I was enjoying my week off and finally not having that terrible metallic taste.

  • cling
    cling Member Posts: 263
    edited August 2017

    Southern and Kandy: hope your Halaven infusion go smoothly tomorrow. I have steroid and zofran as pre-med for 20 minutes, I found eating some crackers (provided by my cancer center) during the pre- meds helped to quiet my stomach.

  • babs6287
    babs6287 Member Posts: 1,619
    edited August 2017

    Cling. So glad the Halaven is working!!!👏👏

  • Kandy
    Kandy Member Posts: 424
    edited August 2017

    Had my first treatment of Halven today, they didn't do any premeds. It went just fine. They do want me to stay on Compazine for 2 days, just to make sue no nausea creeps in. So far, so good. Keeping my fingers crossed that it will work.

    SouthernSurvivor, how did it go for you today?


  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited August 2017

    Hi Kandy - my treatment was fine too. I did get premeds. The anti-nausea is especially important for me given my mets to belly and my inclination on whatever chemo I'm on to get nauseous. Have never had compazine that I know of but makes sense to me. I'm tired but that's not new. I remember last time I felt pretty good until Day 3, so let's compare our days.

    Also, my bloodwork was so much better than it has been - I was shocked. Both WBC and hemoglobin in normal range?! I don't ever remember that! My off chemo week was actually extra long, as I switched chemo days from Thursday to Tuesday. Since my bad dayswere later in the cycle, I was feeling terrible on the weekends so wanted to change chemo days to allow for feeling better on the weekend. And.....(drumroll), my TMs went down 23% - over 300 points- this first cycle. Yes - my TMs are high! Huge drop for me though. Pray this decline continues.

    Glad all went well for both of us - I love uneventful days at the oncology center!

  • babs6287
    babs6287 Member Posts: 1,619
    edited August 2017

    Southernsurvivor- wow that's a great drop. Hope it keeps dropping and dropping and dropping!
    Babs

  • Kandy
    Kandy Member Posts: 424
    edited August 2017

    SouthernSurvivor, drumroll.... that is awesome. I'm so happy that your markers have dropped that much. I hope mine follows suit with yours. Mine are now over 1700. I'm happy your day went well. We will definitely compare notes. Take car

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