Halaven - Day 1
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Ladies I bought a gorgeous wig. I spent tons of money, because I have no idea when my actual hair will ever have a chance to grow back again. Also I bought it long, because I look like a truckdriver in short hair; I hope I didn't make a huge mistake, I had to pay for it before trying it on, because it is ordered from Paris. I'll let you know in a few days !
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Great idea, Amarantha! It may be time for me to get another wig. I’m already tired of mine, even though I only wear it about once a week. I usually wear a cotton cap. Seems my head is cold with nothing on, but gets hot with about anything on it - wig or cap. Hasn’t been too bad in the winter but my head juats sweats in the summertime.
Let us know how you like your wig when you get it.
💕💕
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I am on my 2nd treatment of Halavan. Next week I am off. It is 2 weeks on and 1 week off. 1 treatment each week
I am very tired. I took a 6 hour nap. Since the cancer is in my liver, bones, lungs. It is hard to say if the pain I am having is from the cancer or the chemo. It seems that the 2nd and 3rd and sometimes the 4th day after chemo are the worse, then it starts to get better. I have tried many different chemo meds, since the metastasis in 2012, but none of them seem to work very well.
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I was on this site many years ago. I just came back. I have had 2 treatments of Halavan. The last one was Monday.
Southernsur, I go to Roswell Cancer Institute in Buffalo and they told me that there is no need to drink that stuff anymore. I haven't had it in awhile. It makes it so much easier.
Most of the pain I am having is from my bones (I think). I have 3 broken ribs. My liver, lungs and bones are involved in my cancer. I had a compressed fracture in one of the vertebrae in my back and had to have cement put in. I was first diagnosed with cancer in 2008 and it spread sometime in 2012. I guess I should consider myself lucky.
My prayers are with all of you.
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Welcome, Rozann! Glad you found us - we are a small group here on Halaven. Truly not sure why more people on this forum aren’t on this chemo.
I know what you mean about trying various chemos. I’ve been on so many since MBC diagnosis in Jan 2014, that I really only have a few left to try. I really hope Halaven is successful for you. So far after 7 months and 21 infusions now, it’s still working for me. I haven’t had a lot of luck on previous treatments either. My longest by far was Xeloda at about 15 months. Also, I do think my “worst days” after the Halaven infusion are getting better now. The first few infusions had the worst side effects, just overall felt terrible. I guess my body has gotten used to them, but i would say fatigue is more a factor now.
I can see why you are in pain. 3 broken ribs?? Ouch! Did your cancer cause them to break?
Thanks for your prayers. I will definitely add you to my prayer list too.
Hang in there and keep us posted on how you are doing!
Hugs, Southern
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Hi Rozann, thank you for joining us, so sorry you have to be here, but we are happy for the company. I am going for my fourth treatment today. So far it has been quite easy.
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Hi all! I am switching treatments and my MO recommended Halaven or Doxil. Has anyone done both or had to choose between the two? I am looking for feedback on the side effects of Halaven (other than hair loss) to try to make a decision. Thanks
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Halaven is perfectly tolerable. It's a walk in the park compared to other chemo I've had, but have not had Doxin.
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Hi JFL - I agree with amarantha that Halaven is very manageable. I have lost most of my hair, have fatigue, and don’t feel great for a few days each week after chemo, but still very functional and do what I want and need to do. I haven’t had Doxil, so can’t compare. Halaven has also been very effective for me for almost 8 months now, so I’m quite happy with it.
Best of luck in your decision!
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Amarantha and Southern, thanks for the feedback! Is it an infusion or an injection
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JFL, it’s a slow injection,supposed to go in over 2-5 minutes. I get all my pre-meds (for nausea, steroid, and Pepcid) then the Halaven. It’s really quick.
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Yes, slow injection, however given by infusion - after the premeds. Although the Halaven goes in relatively quickly, the process, with the premeds, and the preparation of the implantable chamber er... or whatever it is called in English
- along with a short consultation beforehand, adds up to at least takes two full hours in the service.0 -
Hello All. I too am on Halaven. Tomorrow will be my second infusion of my second cycle. I am finding the SE's pretty bareable so far...all except the hair 😞 I have been cold capping and this week, three days after my third infusion (first of second cycle) the shedding began...and hasn't stopped. I am devastated. I have two kids teen and preteen and I was trying to keep things normal. But I went in with horribly thin hair from previous treatments and I think my gig is up. I will attempt cold capping again tomorrow but if this continues there is no more hiding it.
Do any of you know anyone who has maintained a decent amount with capping?
Good news is after one cycle my TM's went from 133 to 105... so that's something. Especially since in the last two years I have been burning though treatments.
I hope you all are feeling well! Cancer really sucks
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Hi Teachermom2 - welcome to the thread! Decrease in your TMs is definitely something to celebrate - whoo hoo! I too have burned through many treatments in the past 4 years.
I have never done cold capping but those I know who have on other chemos still lost some hair. Personally, I'm with you in that my hair going into Halaven was already thin to begin with, and I couldn't afford to lose any!
I'm now in cycle 12 and my infusion on Wed will be #24. In the beginning, I shed so much over a very short period of time that I thought I would go bald. I had my sister shave my head pretty closely leaving about 1/4 inch or so of hair Well, my hair didn't all fall out but at least 1/2 of the follicles did. Honestly, I would probably rather be bald as the little hair (all over my head) I have does me no good. I still have to wear a cotton cap or wig. It has grown now on Halaven (only the remaining follicles - the other ones haven't come back) and I've shaved my hair again. I'm thinking the follicles that are gone won't come back as long as I'm on Halaven. I have two boys - a teenager and one in college - and they know this is my new normal for now. Ugh.
I'm sorry my experience in general isn't great hair-wise, but I'm thankful for the side effects not being that bad and my much lower TMs. Have hope - this has been a good, effective chemo for me, and it already looks like it's working for you. (I'm thinking “good chemo" is an oxymoron - haha!) Lastly, I agree, cancer really sucks!
Keep us updated and glad you are here! 💕
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Teachermom, I squeezed out 6 months of cold caps on high dose Abraxane but had to move over to a wig a month or so ago. I lost probably 60% of my hair but was still able to get by with some tricks, including use of Toppik and spray in volumizers. I wore my hair pulled back in a bun every day to hide thin hair on my crown. I did have more hair than most to begin with and some natural curl I could project into volume. Now I probably have 20-30% left. I have a toddler and it is still worth it to have some hair at home when I am without wig so he doesn’t get too freaked out. I have since regrown a ton of baby hair on the top of my head and the bald spots up there are filling in, while my hairline is taking a beating now. Throughout this, I have had areas of loss followed by some regrowth, likely depending on how well the cold cap was placed/tightened.
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I never tried the cold-capping - I couldn't imagine it could work. Anyhow i started shedding three weeks after the first infusion. It shed and shed and shed. I have huge thick hair, and didn't imagine it could all come out, but the shedding started to drive me crazy - there was no end to it, so I bought the finest wig I could afford, much like my own hair. I had the rest of my own hair buzz cut - and its still shedding. The wig is not quite what I hoped it would be, but I'm getting used to it. I got long hair because I had long hair.
I got the results of the first scan after beginning Halaven. It is encouraging because the lymph nodes have shrunk a little bit all over. On the other hand the right breast is completely involved now - is one huge hard lump. So that's bad, and I'll have biopsies in ten days.
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My hair fell out by half on Halaven. I have just started cycle 10 and it has been growing back for a while now. It is completely white and I look like a woolly mammoth so I have to get it cut every few weeks (I decided to keep it short in case I need to change chemos) I have almost no eyebrows or eyelashes which is more annoying to me than the hair loss. Side effects still very manageable. TM's still slowly trending up but LFT's are fantastic. Am off for my 3rd scan in the next couple of weeks but I am feeling fairly positive. Only bad mews is I lose my Onc in a few weeks as he is headed to another state. I really respect him so here's hoping my new one will work out well.
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Cold capping is brutal, but I am desperately trying to keep life normal. Today is my second infusion of cycle two and I am dreading it. I have lost at least 30%... if not more of what little I went in with, it looks awful, but I'd hate to give up. I am just praying it slows down. The other side effects for me have been manageable...I do get really tired, but I am a mom who just has to push though. You all know what that is like. My husband is awesome, and trying everything to help, but sometimes I just need my meltdowns when the house is empty. I feel another one coming on soon.
thank you everyone for the responses, advice, and encouragement.
Cancer SUCKS
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Hi all, thought I posted on this site, but I guess I just trolled. I changed MO last summer, my last one retired. I only had bone mets since last summer. At the time my MO was quitting I started growing a tumor behind my left eye ball. Initially it was thought to be leptomeningeal, but turned out it wasn’t, but it was growing off my skull, but not in my brain. After radiation MO suggested Doxil. It did nothing for me, & my TM went up into the 300’s In Dec I started Halaven. 75% of my hair has fallen out & strangely enough, the area that was radiated started to grow back much darker than it had been & hasn’t fallen out w/Halaven. My TM has dropped significantly, into the 50’s. I have wigs, but my pink ball cap is my favorite. I do get stomach pains a few days after treatment, but it is tolerable. Sue
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Good Morning.
Second infusion of cycle 2 was uneventful yesterday...continued with the cold capping, but feeling pretty defeated as the heavy shed continues. I HATE this. Question...I have been googling and reading obsessively for days...does everyone get premeds? I had them reduce the steroid by half after the first treatment, but I am wondering if any steriodsand the nausea premed are even necessary?
And WHY I am always in the percentage that never loses weight??? It's cruel. I have gained at least 15 pounds in the last two years with all the mess and changes... now I am going to be near bald and feeling fat. When does this shit end? Oh...and did I mention I have had pretty bad lymedema in one arm for a few years? So I never feel comfortable in clothes anyway, but I am always out and about because of the kids, so I have no choice but to be in the public. I struggle everyday trying to keep my secrets. Ugh.
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Sue - welcome back! That decrease in your TMs is really remarkable - congrats to you! Yes, our hair - ugh. I guess we have to have our priorities, right?
Teachermom2 - I don't know about everyone, but I get a steroid, then nausea meds (kytril), and lastly Pepcid for pre-meds. Then the Halaven. I'm OK with anything to prevent nausea, as my mets are in the abdomen and I hate nausea, which can come easily to me. Also, feel free to rant away! We totally get it. I've gained about 15 lbs since I started on Ibrance Oct 2016. I can almost count on if a side effect is “weight loss," I will GAIN weight. I'm about bald too, no eyebrows, and no eyelashes. My eyes water like crazy, which is miserable. I'm sorry about trying to keep your secrets, as that would be very hard given some of our physical side effects. I guess after 4+ years at Stage IV, I'm much more open than I was when first going out in public and now wear my cotton caps most of the time. I do what's best/most comfortable for me in most situations - tired of cancer dictating so much.
Hugs to all tonight!
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Southernsurvivor, I too get really watery eyes which drives me nuts! I have recently also developed a twitch in one of my eyelids. Has anyone else experienced anything like this?
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Tennille, I haven't had any twitches, so I can't speak to that. My eyes have just been so bad lately - ugh! I'm sure it's dry eyes and I need to use eye drops consistently. I just don't like to use them so I don't, but that hasn't gotten me anywhere. You would think I would learn.....
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Ok guys need words of encouragement my tumour markers when I was met diagnosed a year ago were 100. They went up to 280 but when I went on Halaven they went down to 140. They have now started trending upward again and I found out today they are 380 which is the highest they have ever been. So stressed, really like Halaven and dont want to change. I also feel so healthy so dont understand where the growth may be. I dont mind bones but im scared it may be organ. Due for another scan next 2 weeks. Ive just finished cycle 11.
Southernsurvivor my eyes are like a tap I cant turn off
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Tennille, good morning, dear friend. From my own experience, my TMs are now in the mid 200s (but have been almost 4,000 at their highest in 2014 and everywhere between those two numbers since then) and whenever I've had progression, it's still only been in my abdominal area. Surprisingly, it has yet to spread to my liver, lungs, bones, etc. So higher TMs for me have NOT meant another organ is involved.
I'm so glad you have a scan soon to see what's going on. This cancer is sneaky and seems we have to keep attacking it from different angles.
Hang in there - we will support you here no matter what. I know what you mean in liking Halaven. I have a few not so good days each cycle but it seems to be better than a lot of chemos.
❤️ Southern
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Thanks for your support Southernsurvivor. I do look at my previous post and have to giggle to myself when I read that I actually like a Chemo. Cancer makes us nuts 😂
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Tennille,
I 100% agree that cancer does make us crazy! I say the same thing: “I sure hope I GET to stay on Halaven!” Who would say that??!!
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I am new to this site. I was diagnosed with stage 4 breast cancer in 2009. Spread to my bones. I start haleven april 5. Is anyone currently been taking this? what should I expect?
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lverner - welcome to this thread and group of women!
I’ve been on Halaven since July 2017. Overall, it seems to be an easier chemo than other chemos for many of us here (it’s all relative, right?) I’ve noticed I feel the worst on Days 3 & 4 after chemo (chemo day = Day 1). Two weeks on and one week off. Fatigue is also a side effect, just as most other chemos. This chemo is one that can cause neuropathy though, so you definitely want to watch out for that. I have had a bit of that in my legs but not too bad yet. Halaven is actually an injection pushed in over 2-5 minutes, so very quick. I get some premeds for nausea and a steroid. Altogether it’s very quick.
We are here to support you. Best of luck to you on April 5th and keep us updated on how you are doing.
💕Southern
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HI Iverner, I'm currently taking it too, I'm so sorry that you have mets to bones, but am happy to have a new camarade in this boot camp. I've been able to continue doing lots of normal things during this treatment. Best of luck to you, and may it work wonders.
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