Halaven - Day 1
Comments
-
This drug is kicking my butt! It always takes my body a few cycles to adjust to a new drug, but this drug, will it? I find that I "hit a wall" at about 11:15 and simply can no longer function. This happens again in the early afternoon. And then a third time around 5pm. How am I going to get anything done? No nausea. Digestive system is doing okay. The fatigue, however, is hard.
I wish I could have had a week or two between finishing 19 months of taxol and starting up this drug, but the clinical trial made that impossible.
I am on Day 12 of the cycle. So glad I don't have to head back to the hospital for more of this tomorrow.
0 -
Susan, I completely get it! It does suck. I will say based on my experience (on cycle 18 now), I know how my body reacts to this drug and I plan on doing nothing on the hard days, which are days 3 & 4 after each treatment (Day 1 being the day of treatment.) Day 5 it starts getting better. All this chemo has a cumulative effect and it just wears us out. It is frustrating as it makes it hard to live life this way, for sure. Be kind to yourself. I try to do something fun on my off week.
Hang in there, friend. You can do this! 💕
0 -
Hi Susan - sounds like you are feeling the effects of It. I see you are on a trial but wondering what the schedule is - do u get a week off? Like Southernsurvivor - I look forward to it too. I also feel it took me till now to get to know the SE and my body has adjusted some. But I also had a dose adjustment.so far I think it is doable.
0 -
Hi Susan - sounds like you are feeling the effects of It. I see you are on a trial but wondering what the schedule is - do u get a week off? Like Southernsurvivor - I look forward to the week off too. I also feel it took me till now to get to know the SE and my body has adjusted some. But I also had a dose adjustment. So far I think it is doable
0 -
Hi Susan - sounds like you are feeling the effects of It. I see you are on a trial but wondering what the schedule is - do u get a week off? Like Southernsurvivor - I look forward to it too. I also feel it took me till now to get to know the SE and my body has adjusted some. But I also had a dose adjustment.so far I think it is doable.
0 -
Began Cycle 2 today. Same routine as always. Donate tons of blood to the LabGods, wait. Meet with the doctor along with the research nurse and discuss how I feel. One of my weirdest side effects occurred during day 18-20. I had several episodes when I simply had to "pee" NOW. Not in a few minutes. Not in a minute. Now. The looks on their faces as I told me about this was not good. Neuropathy of the bladder. Really? This is a thing? And I am one of the lucky people to have this rare side effect? Other side effect that concerns them is my "weak in the knees" feeling. But the blood work looked good, and I went back to the waiting room and waited and waited for my three-minute treatment.
On the way home, I had to buy a bottle of shampoo! I thought I had a lifetime supply!
0 -
Ann1999, I am on a 2 week on, 1 week off cycle. So 21 days. Is this the standard?
0 -
Sounds like the regular schedule Susan. I will be starting my 4th cycle this Friday. I remember having that urgency to pee on a day or two early on but nothing lately. Didn’t mention anything to my MO - maybe should have. Also have an overall “weakness” feeling- get short of breath when I walk any distance and especially with steps or uphill that doesn’t seem to get much better even during my week of. I guess it’s my new normal☹️. But this is doable-just have to go with the flow. Hoping this treatment is kind to everyone
0 -
Ladies - just wanted to let you know that I'm going off Halaven. Unfortunately, scan results today showed progression, after 1 year of this chemo. Too bad, as I wanted it to last longer. I'm not sure what will be up next. I'm in the process of getting an appointment at Mayo in MN, which hopefully will be in the next few weeks. My chemo options are dwindling. Ugh - this is NOT fun.
I wish each of you the best and a very long run on Halaven.
0 -
Oh Southern..... I am so sorry to hear this. Progression is always difficult. A year isn't bad; not great. Maybe the next chemo will be your magic bullet.
0 -
Oh Southern- crap. Hate to see you move on. I have learned and been inspired by you! Keep on kicking this rotten cancer with your next treatment!
0 -
Thanks, Susan and Ann - have to stop just when I thought I had Halaven down pat....
Keep going strong!
0 -
Southern, as someone who heard these word just four weeks ago, and didn't know where we would go, I know what that cliff feels like. Let us know what your next treatment will be?
0 -
Oh Southern Survivor, I am sorry to hear that news. Very sorry indeed. As Susan wrote above, I do hope you will let us know what the next treatment will be. I pray that new discoveries around the bend will come in time to save us !!
0 -
The tufting has begun. A little earlier than expected, but my Taxol hair might not have been that sturdy. I have a lint brush at the ready. Worst part is, since I already have no eyelashes, the hair that escapes the lint roller ends up in my eyes. And that is annoying!
0 -
Susan- mines tufting too... kinda weird. Tufting on the top but still have some hair - not much- in the back. Hiding everything under my caps. Probably in denial.
Started 4th cycle today. Pretty uneventful. Not really looking forward that much to feeling crappy for the next two + weeks. But then again it is certainly better than the alternative.
Southern (if u are still following this thread)hope things are going well and u got an appointment at Mayo.
Hugs to everyone!
0 -
Hi all - yes I’m still following as I hate to give you gals up!
Got an appointment consultation at Mayo on Thursday, Aug 23rd, which was the first available. Mayo would not schedule any biopsy procedure until they see me, which then probably takes me into the following week. Ugh - to me that just means another delay. I’m frustrated as I’ll be off chemo for all this time and I pray that my cancer doesn’t go crazy with nothing keeping it in check.
Thank y’all for the support and I’ll keep each of you in my prayers. I’ll update you as I know anything further and will keep reading your posts. Enjoy the weekend as you are able.
❤️ Southern
0 -
Oh Southern...I have been thinking of you and hoping it was just a blip in markers. Maybe you will find that magic bullet at your trip to Mayo...I’d be freaking out about that wait too. What is it you need a biopsy oncan’t your MO have it done prior for them?
I am still away...at my Moms in Germany with the kids. The weather has stunk, we are having a heat wave, it’s been in the 90’s everyday, which they are not equipped for...AC is not a thing here. My folks have it thank God, but when you go out no one does. Paris was also brutal, we melted, literally, but I trudged along and made the best of it. It was tiring though!!
I get back on Wednesday and my PET is scheduled for Friday to determine my fate. I am thinking I too will be moving on from Halaven, but still praying that I get to stay. Next for me will probably be Doxil...and from what I have read it’s a lot tougher.
Some things done change...Cancer SUCKS...but we are still stronger💕💕 Feel well everyone!! Hopefully you all have great weather in store for the weekend!!
0 -
Hi Teachermom - good to hear from you. 90s is way too hot with no AC most of the places you go. Ugh - I can’t do heat with no AC. I’m thankful you have it in your Mom’s home, at least. Praying your PET shows better results than expected.
My cancer is ILC and is in my stomach. It can be tricky to biopsy and Mayo are the ones who found it in 2014. I just thought they would know what they are looking for and also would process the results quicker than where I go in Dallas. At first, I didn’t know until last Wed that my MO would keep me off chemo while we waited for Mayo. Then we found out my appointment isn’t for 3 weeks. I’m concerned. I’m going to call my MO on Monday and leave a message with the nurse about it. It sucks - worry when we are on chemo and then worry when we are not!
0 -
Hi Southernsurvivor, If you are looking into a possible clinical trial to start next, most require you to have a "wash-out period", where you are on no chemotherapy for 2-6 weeks before you can start the trial drug. Before I started the Halaven & Keytruda I had to be off chemo for weeks (? exact time). And my cancer grows so fast it could have doubled in that time frame....made/makes me very worried....Pray it's working.
0 -
To emphasis what KPW has stated, for my current clinical trial I was required to be 14 days past any other treatment. The research nurse was perplexed when I requested more. This request was not granted. :-)
0 -
Yes, KPW & Susan - that is what my MO was thinking when he said we would wait for Mayo appointment. He thought if they had a great trial for me, then I will have started the wash-out period. It’s just quite concerning with my scan coming back with bad results. My first inclination to go to Mayo wasn’t really to look for a clinical trial but just to get a 2nd opinion and do the biopsy procedure. I was already thinking about going to Mayo before I knew Halaven stopped working. So now this whole process just became more urgent. Ugh.
0 -
Southern - so my experience getting a second opinion at Mayo (Rochester MN) involved a first visit with a doctor from their breast clinic who didn’t really know why I was there but when I told her- 2nd opinion, possible ongoing medical care and biopsy etc she got it immediately. She was the one to get an appointment for me the next day with an oncologist who saw me and was able to schedule the biopsy for a couple of days later. Otherwise it would have been at least eight week delay to see an oncologist as they are booked out so far. I’m pretty sure telling them I wanted them to do the biopsy really caught their attention. Don’t know know if you are going to have genetic testing done, but when I was there this past February it was a clinical trial so free - done through TEMPUS. U may know all of this from your experience before so can just disregard. Their clinical trials are on the web site... I also work with Cancer Commons to research trials.
0 -
Thanks, Ann. My experience at Mayo in 2014 was actually quite different than this time as my appointment was with a gastroenterologist due to my blocked duodenum. I hadn’t confirmed what was causing this blockage at the time as my Dallas gastroenterologist kept telling me it wasn’t my breast cancer recurring. Well, he was obviously wrong and by the way, I changed my gastro doctor immediately when I got home. Thanks for the info on their process - I certainly appreciate it! They do know why I’m coming there so hopefully it works out for me
0 -
Ack ! blocked duodendum ? Thinking of you Southern Survivor !!
0 -
Hello. I am also receiving Halaven. Had my 4th treatment on Friday. I am waiting to see if it helps some fluid that has collected in my abdomen. My doctor explained that it works differently from the past chemo I have had. It works on the molecular structure of cells rather than killing both good and bad cells. I sure hope I begin to see a reduction of fluid soon. Counts look good and hair slowly coming out. I have had many different chemo treatments over the last almost 20 years. I am so thankful to still be here and thriving. Onward and upward!!
0 -
Solo, 20 years???? Wow! Is your Halaven schedule two on, one off?
0 -
Hi Doloseb- 20 years is fantastic! My first DX was in 1999 with mets DX this past February! Yes Halaven is a different chemo. Im on cycle 4 and will get scans end of August so will see if it is working. Haven’t had abdominal fluid so can’t speak to that but there are many others that may chime in. Keep us updated.
0 -
Today is the beginning of my "off" week, cycle 2. This cycle has been far more tolerable. Some fatigue, but not every day. Neuropathy in my feet is slowing changing to Eribulin based, not Taxol, instead of both together. Fingers are getting numb spots now as well. Hair tufting has simply stopped with no bald spots. My gastric issues are not bad. The worst side effect is heartburn, something I have only had while pregnant 31 years ago. I still have a "loss of appetite" but am able to eat, just have trouble deciding what I want to eat. Mr. 02143 does have preferences, so we eat what he desires. That works well enough.
My daughter will defend her doctoral dissertation this Friday, a HUGE milestone. So pleased that I can attend during a pretty good week.
0 -
So bummed... I am moving off of Halaven. My scans showed progression and I am now going to give Doxil a try. Side effects sound nasty, but I may be able to ditch the cold caps.
I hope you all are feeling well and that Halaven continues to work for you!
Cancer friggin sucks!!!
0
