Halaven - Day 1
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neupogen was a success so had chemo. So far so good. Wish me luck. I took moltrin for that shot. Nasty bone aches with that stuff. Wish me luck
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GOOD LUCK, Maureen! Glad you were able to get chemo. Hope the SEs are manageable this time. Let us know how it goes.
Pat
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Thanks pat
I hoping this is my magic bullet.
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Maureen--I hope it is too! My tumor markers came down rapidly on Halaven--from over 1,000 to 200. And best of all, I've felt so much better on Halaven after a bad time in February and March when my cancer was running amok in my bones. Just keep track of whether you get neuropathy symptoms because they can adjust the dosage to keep that under control.
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I just had the second dose of my second cycle. The second cycle has certainly been easier than the first one. Maybe a bit tired and achy but, so far, so good. The hair is another story. There was so much hair in the shower last week that it looked like a guinea pig in there with me. The hair loss started about 5 days after the second dose of the first cycle. I am hoping it is slowing down a little bit now as I still have quite a lot, but rather thin around the part and hair line. I went to a wig shop, and she had little wigs that just sort of sat on the top of your head to cover hair thinning. It was good, as it mixed in easily with your own hair and looked quite natural.
I hope everyone is feeling well, keeping their WBC up, and energy going.
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today is 2 days after this second cycle and so far I'm doing ok. Finish up antibiotics on Friday so all should be ok. I'm tired but nothing I can't manage. If I was still working Id be exhausted but I can manage laundry and picking up the house. I have intermittent sweating but nothing like the first dose. More like a hot flash. Glad you're hanging onto your hair. I have a huge bald spot in the back of my head from gamma knife. I have an MRI next week to see if I need WBR so a little nervous for that scan. Keep on plugging along
Love
Maureen
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Well, I'm off Halaven after 8 cycles. Yesterday's scan continued to show progression in the bones (worse than in April, and now showing up on the CT scan as well), so it wasn't tumor flare--appears that it simply never worked on my bones. Lymph nodes shrunk a little more or remained stable, but doc thought the slowing of shrinkage was a sign that the drug is "petering out" even with those. I'll get the results of the Foundation One study done at Ohio State (which isn't released until you have progression) and compare with the Dartmouth doctors' recommendation of Ibrance/Femara as the next line.
Best of luck to all of you on this drug, it was an easy one for me, and I'm sorry it didn't work longer/better.
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good luck moving onto the next drug nred. I hope the next drug is your wonder drug. Did you lose all of your hair on halaven? Mine is shedding and I'm trying to decide shave or stay?
Love
Maureen
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No. It thinned considerably, though.
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thanks!!
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Hello Ladies...I have been busy...well and busy...just got back from Oregon Rode trip with my son and bf to drive the coast to Gold Beach..where my other BF lives in a RV park and both her hubby and her self work in the area...small town of 2000...tourist town now...had a great time...Been feeling especially well since I have been put on predizone for my Halaven SE I have gained 10 lbs..I am more active...no ER visits in 2 mths..I have my PET scan coming up on Monday...TM were taken last Tuesday...still on Falazadex and bone booster mthly and Halaven 8th day IV and 8 days off..I have never felt better...I don't feel sick at all...I have been able to be my regular self ...It's amazing...but it could be like a when your MANIC from Bi polar...I'm thinking that this won't last...but I'm enjoying it while I can...Not thinking about anything negative...focus...and my weight was the main thing...since I was loosing weight 5 lbs weekly...there for a about a mth...I have been reading everyone's post...and again I'm sorry that I don't attend to respond a daily basis...I am trying to enjoy my summer as long as I am feeling so well...I hope you all understand...
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Beautiful pics. I've been having luck with halaven lately. The onc lowered the dose and other than a little fatigue now and then I feel fine
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Results from PET scan...Wahooo!!!...No significant changes...Stable...NO new bone METS and liver METS have dissipated down to a couple from before having 30 -40 lesions down to a couple..I saw them on the screen..only a couple lighted up...
OC said that we will just stay aggressively on the treatment plan I'm on...Halaven/Falzadex/Bone Booster (forgot the name of that one)...
I am greatful to God and my family and friends for all the prayers and support...I really have been being so positive and taken care of my self ...mind/soul & heart....Love you all...I want everyone to have this day...very soon in there lives...I pray for that.....Carla
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Carla,
Great news! I am so happy to see that amazing smile of yours and hearing you are having a fantastic summer. Gold Beach is one of my very favorite places, so just a teeny bit jealous! I've just been lurking here lately but had to log in and congratulate you on that stable scan. WooHoo for you!
Jo
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Carla - WOW - so happy for you!
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Carla 👍👍
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Hey there! Is anyone still out there? I sure hope so because I'd really like to connect with others who are on Halaven. I'm on my 2nd cycle of it and get my 2nd infusion of this cycle (4th infusion total) on Friday. I am of course part of the unlucky 45% who lost their hair from this med...it came out in huge clumps 2 weeks after I started it. Most of the hair loss is on the top of my head (like an old man), so I decided to shave it all off. This is the 3rd time I'm dealing with being bald, but I don't think it's any easier than the 1st time. I have lost of head wraps, but I'm definitely going to get a wig this time. It looks like I'll be on Halaven for a long time if it works for me, so maybe a wig will make me feel better about it. Anyway, I'm not going to write too much in case this thread has gone inactive...it's been 3 weeks since anyone posted. I'm hoping everyone is just busy with their summer because I look forward to developing friendships with other ladies in the same shoes as me. I hope you're all doing well!
Michelle
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hi there. Still on halaven. After a rough start and decreased dosage, I'm tolerating well. I take zofran every day to avoid nausea however overall it's okay. I have the "old man" look too but won't shave because I have just enough hair to wear a hat and look like I'm wearing it because I want to vs covering up. I have beautiful wigs but they are all in my original hair color and since I went grey, I'm not sure I can still wear them and not look stupid. Welcome to the halaven site. May we dance with this toxin for a long long time
Maureen
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I'm on it. Had three infusions so far, spaced far apart because of low white count. Now we're planning to stay on schedule with the growth factor shots.
Fortunately I have no side effects and haven't felt this great in a year.
Went into this bald and hair is growing back.
Had resolution of bone pain after the first infusion. Hopefully my liver is doing better as well.
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Hi,
I am still on Halaven, as well. I've had 6 infusions so far, getting the 7th on the 11th (my first infusion was June 5th). I, too, lost most of my hair after about 2 weeks. It was so thin that I ended up shaving the rest off because I got tired of the mess on my pillow, in the shower, at work, etc. I have not had neutropenia or other low counts and am concerned that it isn't working well. Having said that, I feel the best I had in several months and my bone pain disappeared and my ALP lab went back to normal for the first time in a while. My tumor marker has been essentially stable for the time I've been on Halaven. I was getting pre-medicated with Decadron, but stopped that because my blood sugar went too high after every infusion (I'm not diabetic normally). I still take the Zofran for nausea.
I'm curious if anyone out there has had a complete response/became NED on Halaven. I've never been NED on anything.
Also, do you know if there are any trials going on for IV Vitamin C and Stage IV? I've heard this is helpful with other cancers but cannot get my onc to give it to me.
Thanks all, and take care!
Liz
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hi Liz
I was close toNED on taxol haven't seen him since. I have mets everywhere. Where are your mets?
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Hi Maureen 813,
I have mets to lymph nodes, liver, and bones. Probably also to the abdomen but haven't had a PET in a while. I did find out my tumor marker went down from 327 to 234, so I am excited about that! My tumor marker seems to be a fairly reliable predictor. I'm kind of shocked about my tumor marker because my labs weren't dramatically improved except the ALP. Where are your mets? I'm also curious about your experience on Xeloda. I didn't like it. Also my oncologist said he would try me on Gemzar next. How tolerable is that? Thanks for any advice you can give.
Liz
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hi Liz
I have mets to liver,brain,bones lungs basically everywhere. PET scan this month so we will know more. Brain is clear after gamma knife. The onc achieved very good control for a while on xeloda but I couldn't tolerate with hand foot issue and uncontrolled vomiting. The gmzar was very tolerable. A kind chemo for me. Good news on tumor markers. Mine are usually right on too!! Markets dropped on Halaven so we stay the course until no longer working.
Maureen
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My last PET scan was in July...I have bone/liver mets....my OC when I had the results the day after was very happy for me...he gave me a hug...and usually when I get good news I hug him...so he was very happy of the results...No significant changes in my bone/liver mets..My tm in both area's have dissipated significantly..Tumor markers are below 50. So I have given the label "STABLE" in my condition...I have Halaven every other week...I have gained 15 lbs back which was very needed...I feel energized and am doing things that I could do 1yr 3mths ago...since i was diagnosed. I have days that my bone mets flair up and I'm in alot of pain, but that is when I have over done that day...Like camping and hiking i did this weekend...oh boy the pain!! but it was so worth it... I have 3 treatments tomorrow...Halaven, Flazodec, and my bone booster...so will see where it takes me this week..usually a couple days and I'm back up being my old self... April 3,2014 first Diagnosed...This was this weekend. 8/9/2015..I feel if I keep myself in the moment and positive daily...I can maintain the woman I am and was before this disease struck me..first back in 2010...Just keep praying to GOD and be HAPPY!! Love to all you ladies...I know I'm not on here much...But I read all your post...and just want you all to know that I pray for all of us everyday...Peace Out... Carla
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I'm so glad there are still people on this thread! I had my 4th dose of Halaven on Fri & am not having a very good day today. I get a super elevated heart rate a few days after treatment...does anybody else have this? Resting heart rate is around 110, then if I simply walk from the living room to the kitchen, it skyrockets probably to 140 or higher & I start sweating profusely all over my body & I have to sit down & catch my breath & let my heart rate come down. Earlier my ears got all muffled too until I sat down & recovered. It's really scary & I wonder if I'm the only one going through this. I've been seeing a cardiologist because I'm also on Herceptin and he switched my heart medicine a few weeks before I started Halaven...I'm really not sure why. I talked to my onc about the heart rate & sweating & she sent me to see the cardiologist that day. He sent me for a CT scan fearing pulmonary embolism, but I was all clear, so he told me to increase the dose of my new heart med, but it doesn't seem to be helping. I have an appt with him on Fri, so hopefully it'll all get worked out, but I wanted to see if anyone else has this side effect because I haven't read anything about it.
Thanks
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yes Miki I sweat all the time when I try to clean the house and such. Have it on my list to discuss with the onc on Th
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Hi Micki and Maureen,
I sweat buckets too. I thought it was just me! One thing I discovered because of the sweating is that my blood sugar has been quite high. I don't know if this causes sweating or not. My oncologist actually stopped my decadron today prior to the infusion to see if this will resolve the blood sugar issue. I also had problems with Afinitor raising my blood sugar and there were no steroids involved with that.
Also, my heart rate is high too, and sometimes irregular.
Hope this helps. My liver labs were awful today and I hope that doesn't mean my improvement is over.
Liz
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sorry to hear about liver enzymes. Hopefully they turn around soon
Maureen
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Hi everyone! I guess I can consider myself part of the stage 4 crew even though I hate to admit it! I'll run down my list of what happened in a year & a half.
*2/14 diagnosed with stage 1, 1.3cm right breast IDC triple negative. Negative nodes, clear margins, double mastectomy
*5/14-10/14 CMF chemo
*11/14 small lytic lesion found in head of right clavicle
*12/14 radiation to clavicle
*2/15 clavicle clear but two less than 1cm nodes in right supraclavicualr area positive for mets. Started on taxol & carboplatnin
*6/15 nodes clear of cancer but now 1 hilar node in chest and 1 subpectoral node lit up on PET. Continued on T&C
*7/15 Liver enzymes high stopped carbo kept taxol
*8/15 new pet shows hilar node from 1.7cm to 2cm, subpectoral node gone, new 1cm para tracheal node lit up and one supraclavicualr node returned in neck. All my organs are ok just 3 active nodes going on
Now I'm starting on Halaven & Carbo next week. Studies show those two work well with triple negative. I've never lost my hair with any chemos I was on, just thinned with taxol. I tolerate chemo well, also work full time as an ICU nurse. I'm wondering all the side effects anyone had with Halaven?? What should I expect? Let me know the good, bad and ugly of this drug! I start next Monday!! Hope everyone is doing well! ;-)
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No advice here...just saying I wish you the best...hope Halaven knocks the mets to smitherings & keep your positive attitude! Bet your patients love you :-)
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