Halaven - Day 1
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lverner, glad you found this amazing group, and you can see that you are certainly not alone.
Sending you All
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Hey everyone. I was diagnosed stage IV in May of last year. My recurrence involved many many lymph nodes and one spot in my L2. I started Kisqali and aromasin. Last week I found out that there’s been progression. A subpectoral lymph node and my spinal tumor have both doubled in size. So next stop... halaven.
I’m terrified! When I was on a taxane (Taxotere) with my original dx, it was horrible. My eyebrows and eyelashes fell out (I was already bald from ellence), my eyes watered constantly, my nose would bleed regularly, just out of the blue, and I would get sharp, shooting pains through my legs. Never mind that I’m a complete baby about IVs!
I had a port put in with original dx, and never had it taken out. However, I haven’t had it touched either. They think they should try the port, but even the thought is traumatic. I cried every single time it was accessed back then. Yes, it hurt, but I used the numbing spray, so a lot of it was probably psychological.
Everyone says this chemo is easier than others with manageable SEs. I need to be emotionally prepared. I know I’ll have hair loss. Otherwise, what am I truly looking at
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Oh yeah... I actually read through another support group for this chemo, and people there were saying that on their off week they would get really depressed and angry.. tending to take it out on their loved ones. Anyone here experience that
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Swiss,
I understand your fears about Halaven. It's a cytoxic chemo, and those have a larger impact than the anti-hormonals, usually. Your mileage may vary.
I was on Halaven for a year, and it really kicked some cancer fanny. I did lose my hair, but other than some mild anemia, I had no other side effects. I did have to take a break at month nine for the anemia, but I am prone to it.
For your port, I can't recommend the EMLA numbing cream enough. I am a giant baby about needles (any medical procedure, really), and my favorite nurse set me up with this stuff. Apply it thickly to the port area about one hour before access, and place a non-absorbent dressing on top of it so that it doesn't get on everything. I've used tegraderm, and cling film, when I'm feeling cheap.
Might I also testify to the healing balm of one mg of Ativan 30 minutes before port access? Not only am I a standard baby about needles, but I am a fainting, barfy, sobbing baby. Everyone has a better time when I have some Dr. A on board. And, if there's any hang up with my port (sometimes it needs flushing - it's been hard at work for six years now), I dry swallow another mg. I ugly cry, so this approach makes for a dryer port access, if nothing else.
If your port hasn't been used or flushed in the last two months, you might need some "port cath". It's a heparin (I think) solution that they put into the port and let it sit there for a half hour. Then they suck it out, and it has usually dissolved any occluding gunk in your port.
The FDA has forbidden medical providers to store the numbing spray, as they have deemed it a fire hazard. That's bogus, I know, but the rules are the rules. However, you can still buy it, and my nurses said they'd be cool with using it, if I bring it and take it away. I did buy some, but the EMLA works so well, I've never used it.
If you have changed providers, it might be nice to know what sort of port you have. Most of us have Bard power ports, I think, but it's good to know what kind, as each has their little quirks. It might also be good to find out what size needle you need for access - saves playing a guessing game. I take a one inch needle, for example.
You are going to enjoy Halaven's cancer fighting mojo. It's a good drug.
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Oh, Blaine... I ugly cry, too!! Thank you so much for your insight.I’ve thought about taking Ativan beforehand; you really think it helps?
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Swess,
O. M. G. Yes, to the Ativan!
Jennifer
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Hi Swess - so sorry to hear about your progression. I hope I can calm your fears a bit by sharing my experience. I have been on Halaven since July and the side effects have been manageable. This is what I’ve had so far: really thinning hair (need to wear a wig although not completely bald), most of eyebrows and eyelashes are gone, an overall not great feeling but no specific pain on Days 3 & 4 after chemo (chemo being Day 1), fatigue (I’m at 4+ years of MBC treatment, so it’s not just due to Halaven), and watery eyes (this side effect started when I was on Xeloda and is still here.) I function quite well most days and rest as I need to. I think it has been easier for me than the Xeloda side effects but harder than the hormonals I’ve been on. Definitely easier than other IV chemos I’ve been on. Halaven is working very well on the cancer so far too so I’m thrilled about that.
I do use a port and really like it vs. getting stuck in a vein all the time. Just as blainejennifer said, I use the emla cream and it works very well. Also, I haven’t noticed depression or anger on my off week of Halaven. In fact, I always like my off week, as I feel pretty “normal.”
Good luck to you on Halaven and feel free to ask me any further questions. Keep us updated on how you are doing - we care!
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Hi Swess, I am with Southernsurvivor. This is a cruisy chemo. Day 4 & 5 I need to take things a little easier and I do sleep a bit more. Lost 50% of my hair but its already growing back. No eyebrows or eyelashes to speak of and yep watery eyes. Also I dont know about the others but on my week off its as if I dont have cancer at all. I feel really good and have no issues at all. You will be fine and we are all here for you. Oh yeah, I cant comment on the port as I don't have one and never have had one but Emla is good stuff if you can get it.
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Good Morning!
Well...started cycle three yesterday and uneventful. Still cold capping and fingers crossed shedding stopped this past week, I am hopeful. Maybe the brutal freezing will be worth it after all. I would say I have thinned about 35%... so funny 40% makes it sound so much worse so I am sticking with 35!!! Ha. Mind games.
Tumor markers continue to drop..they don't seem as dramatic as others, but a drop is a drop. Went from 133 to 105 after first cycle. Now after second 105 to 87. Hopefully will be in the 60's after this one.... dare to dream!!
Feel well everyone. Cancer sucks but we can't let it win
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Wow, Teachermom2, the drop in your TMs is fantastic! Halaven is definitely working for you - congrats!
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Southernsurvivor thanks! I try not to get too excited... they go down...treatment stops working bc cancer figures another way around...and they go up. It's a vicious cycle. Scans will be the true test and won't do those for at least another month.
But for now I will smile with my red steroid face and do some laundry!! It's yucky out in NY so keeps me moving in the rain!
Feel well!!!
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Hi all -
Wanted to give you an update of my MO (actually PA) appointment. My TMs have gone up 24 points this past cycle. This is the first time since I started Halaven in July 2017 that my TMs have increased. It’s not time to panic but it’s definitely concerning to me - it’s just my life we are talking about. (A bit is sarcasm there.) I was so hoping for another decrease and be in the 100s. 😡
Tennille- I feel like you - I hope I GET to stay on Halaven! I will do another cycle (cycle #13) and test TMs again in 3 weeks.
Hopefully I will feel a bit better in the morning about this. Can’t get too down over 24 points. Honestly, I think it’s the fact that my chemo options are dwindling really fast right now. Been going through these treatments way too fast.
Good night all - praying for each of us. 💕0 -
Hang in there Southernsurvivor, you are a few infusions in front of me and I too have had a rise in tumour markers. It started going up by 20 points but then the last one was a 50 point increase. Feeling a little stressed and I have a scan on the 16th. I have a gut feeling there is some progression but I hope not.
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Starting Halaven on Tuesday. Will be adding Keytruda when approved. Starting a thread on Keytruda. Mets in peritoneum and found progression today after 5 months on gemzar/cisplatin.
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My halaven should’ve started on this past Monday, but for insurance issues it has been postponed. They will be calling me with the new start day. It’s been a rough week, trying to prepare myself and my loved ones. I tend to downplay my worries for them. Anyway...
Today my 16 year old heard me talking about my impending hair loss, and started crying. She said it just makes things too real. I agree with her. However, I’m not so sure that it’s a bad thing for people, especially my husband and kids, to realize that things are very real now. I don’t look sick, so I just appear lazy.
Anyway, I’m not good at asking for help. If someone steps up and insists, I make sure to let them know my gratitude, but if they just offer then I’m notorious for saying, “no, I got it”. So tonight i called my mom and told her that because they want to try and access my port at the first chemo (which hasn’t been accessed in 9 years!), I’d probably take a nerve pill beforehand. Before I could finish she interrupted to tell me that of course she will go with me. I didn’t want to start crying so I told her this and swiftly got off of the phone before I cried like a baby. I’m so grateful that she automatically said the right thing. I felt so loved.Why is it so hard to ask for people to be there for me??
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Southernsurvivor and Tennille hopefully the tumor markers are just a hiccup and there is NO progression. My MO always says not to get so hung up on the numbers....they can fluctuate, but it doesn't always mean the drug has stopped working. Hopefully they will stabilize again after this cycle. Huge hugs 💕 You've got this!
Swess I just started cycle three Tuesday and am cold capping. I totally understand all the fears and anxieties. I have a fourteen year old daughter and twelve year old son, and keeping my hair was my way of trying to keep things normal, although it's for me too...who am I kidding? This shit is hard enough. Halaven is doable, I was pleasantly surprised at how much easier it is than some of the other regiments. Hopefully all goes well with your port. Just hang in there and breathe.
Feel well everyone.
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Oh gosh - not fun to have all the emotional and physical effects of navigating MBC!
Swess - I hope insurance gets worked out soon and you can start Halaven. I always feel better mentally when I have a plan in place and I’m “doing” something. I totally get it about asking for help as I’ve never been good at that myself. I like to know I can still be independent but this cancer stuff can break you down. I do think I have gotten better about requesting help as I’ve had some really rough times in the past 4 years with Stage IV when I HAD to have help. It is humbling. Your family and close friends want to be able to do something for you for them to feel they are assisting in some way, so allow yourself to accept the help. Don’t forget the emla cream for the port. I just used this on mine on Wed and didn’t feel a thing! PS. It is good to sometimes be vulnerable in front of your kids too. I think my 2boys sometimes “forget” that I’m even sick - and most of my hair is gone!
Teachermom2 - thanks for the hugs. Needed that today. Glad you are coping so well on Halaven. Here’s hoping the cold capping works very well. I look forward to hearing how it goes. Today is Day 3 of cycle 13. Not feeling my best but doing OK.
Take care all! 💕
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I haven’t had any medicine since last Friday. No Kisqali. No aromasin. And I’m in so much more pain. my underarm has hurt tremendously all day long. Is it possible to have so much more discomfort in one short week?
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Ugh Swess insurances suck! At my office my nurse is a LOVE, she is always such a great advocate, maybe you could call yours with your concerns and see if she can help... I feel like whenever I am off drugs my mind runs in all directions and I make myself crazy. Maybe she can help diminish your fears...
Southernsurvivor let's start the morning off with another huge HUG💕 I had my treatment Tuesday and currently my morning coffee tastes like crap..😔 However, I managed a nice mug and an English muffin...I swear..I am the only one who never loses weight!! It's unfair.
Feel well everyone and power on
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I really feel for you ladies in the US. We dont have Insurance problems in Australia. All my treatment is free and there are never any hold ups because of bureaucracy. Hope you get your treatment soon Swess.
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It looks like tomorrow’s the day. The MO wants to meet me at 9am, and treatment should start afterwards. I have a driver and 2mg Ativan on hand. Fingers crossed this will go well!
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Swess Good Luck!! You will do great.
I have an infusion tomorrow too. Mentally preparing for the capping. Boy do I hate it... 😔❄️
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Swess, thinking of you tonight and cheering you on! Let us know how it goes. 💕
Halaven, here we come! I have my infusion tomorrow. #2 of cycle 13, I believe.
Know you are all in my thoughts and prayers tonight.
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Well, insurance wouldn’t approve halaven until I’ve failed abraxane, so I started abraxane yesterday. Thank you all so much for the warm welcome... xoxo
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Swess, wishing you the best on abraxane. It’s a good drug too but crazy that insurance can dictate treatment Always a curve ball when dealing with MBC.
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Good news, folks, the Halaven has completely made my extensive lymph node mets disappear from the PET scan. Meanwhile I have progression in my right breast, which appears to be of a different type than the rest, and is not responding to the Halaven, however the lymph nodes response to Halaven seems to have made it possible to envision a mastectomy of the right breast. I had been hoping that such a solution would be offered. I would really love to get this cancerous right breast off of me. And then I will be even like a washboard, and be able to choose to be flat or fluffy or somewhere in between via creative stuffing.
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Hi all - how is everyone doing? Just realized it’s been awhile since anyone updated.
Amarantha- good news about your PET scan results related to your lymph nodes. Keep us updated on your status and if you will have surgery.
I had a short trip to Seattle from April 19-24 to attend my aunt’s 80th birthday party. Then came back home to have Halaven on Wed, April 25th. It seems like I’ve had worse side effects this last infusion. Metallic taste in mouth, the big D, and just not feeling that well. My TMs came down 5 points this last cycle, so they seem stable at the moment. Next infusion tomorrow. I’m tired of chemo right now. Starting to be a big beating.
Tennille, Teachermom2, and Milwmama - thinking of you!0 -
Hi all, Halaven although keeping my liver and bone mets stable hasnt stopped new growth in my ovary and clavicle so I am saying goodbye as I now am heading to the Abraxane crew. I wish you guys all the best as you continue your Halaven journey.
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Tennille, so very sorry to hear about your progression. It seems that your TMs are a good indicator for you, as are mine. I'm wishing you the very best of luck on Abraxane. Thanks for letting us know - you are in my prayers. 💕
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Hi Everyone!!
Just had my second treatment of round four yesterday...so I have my nice red steroid cheeks this morning!! Yes..still torturing myself with cold capping, but it's worked. I have (knock on wood) completely stopped shedding and am able to totally sport my thin hair without anyone being the wiser. Just looks like a constant bad hair day. I actually wish I could stop the capping...it would seem that once the shedding stops for those that haven't cold cappped, the hair loss is over. But I am afraid😔
Just had a pet last week, after a panic with a rise in my marker...it was only six points. However for me, the markers are also always spot on. Ugh. Soooo the pet my once was happy with over all, liver shows tremendous improvement, and bones are stable, but there is a new tiny spot (on my liver) that they can't see on last pet, that is concerning. Of course😔 So now we wait for tumor marker check we take next week, we do it every round on my week off, and go from there. Hopefully, it was just a hiccup, but I am not so sure.
Feel well everyone!!!
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