Halaven - Day 1
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Happy Thanksgiving my Eribulin friends.
I have now finished cycle 7. Over the 20 weeks that I have been on this drug, my blood pressure has steadily dropped. Each week, just a bit, but this Tuesday the research nurse declared that my blood pressure was dangerously low. When I got home I called my primary's office and scheduled an appointment for Friday. Yes, they wanted me to come in earlier but TWELVE people coming to Thanksgiving! There was no time for a doctor visit. Yesterday I had 30 whole minutes with my primary, who I really, really like. They took my blood pressure three times and it was only seriously low; not dangerous. Given my 25 lbs of weight loss over the past year and the current readings, she has taken me off all blood pressure meds. Her thought is that we find the baseline, not affected by the drugs, and then adjust from there.
She did ask if low blood pressure was a side effect of Halavan, and I had to admit, I didn't know. Quick research at home, and why there it is, a rare but not serious side effect! I seem to always get all the weird ones! So, maybe, just maybe, if my blood pressure is a bit higher I will regain some of the energy that I no longer have. [Yup, always looking for the bright side.] More energy would certainly be a treat.
Thanksgiving went well. For the first time ever, I asked my guests to bring food with them. I did make 9 items on the table.... and each guest brought something. It worked well. Since my sister can still not eat by mouth, I didn't have to have vegetarian versions of everything which was a huge work-reduction. I would not have had the capacity to do everything this year. The dishes are all done. I still have to wash all the linens that have cranberry and wine smudges. I am making some Kaiser rolls right now so our Turkey has some fresh bread to hang out with as a sandwich.
I hope that all of you were surrounded by the people who make you happy!
*susan*
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Susan, My blood pressure has been lower too, I was orthostatic and felt like if I stayed standing I would pass out. I have been making sure I am drinking fluids all day. I've been getting dehydrated. My MO has also had to give me extra fluids with potassium before I get my treatments. I thought it was more likely due to the pembro....Your energy is incredible! I went to in-laws and brought a several side dishes, but wouldn't have been up to having everyone here.
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Hi everyone, I start Halaven tomorrow. My 4th chemo for 2018... hoping this one is the one that lowers tumour markers and keeps them low for more than a few months!
Any advice on what to watch out for would be appreciated. I had an iron infusion recently and neupogen injections - my body is tired after 10 months of chemo and fatigue is the most difficult thing for me to deal with at the moment.
Browsing through old posts I’m crossing fingers I’m not going to lose my hair - that upsets my daughter the most. It is already thin after these past three chemos though, so it wouldn’t take much for me to have to dust off my wig!
~K.
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So does your hair grow back while still on Halaven ?
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It is time for me to update. Well, to be honest, I am overdue. Last week was week 1 of cycle 8. Tomorrow will be week 2. The foot neuropathy is a bit better. It is affecting a smaller area of my feet, but that darn left foot still gets "caught" at unexpected moments. The cramps still wake me regularly. I have found that in addition to the stretching, it is good for me to wear one or even two pairs of socks to bed. This keeps the legs warmer which seems to help. Of course, this means that I am now often too hot. A small price to pay, I guess. However, the cramps still happen and they still hurt like hell. The weaning off of Lisinopril was rather rough. But the crushing headaches have passed. At Dana Farber, post-Lisinopril, my BP was sky high. The next day at my endocrinologists office, where they take their time and do an old fashioned hand reading, it was perfect. We shall see how it reads tomorrow in the rush of a Dana Farber office.
I think that the Eribulin is also affecting my overall mood. Does anyone else have moments of despondency for no particular reason?
*susan*
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Ladies, I may be joining you. I get the general idea on side-effects and that I should ask my onc to start at 'not the top' dose. My question is the following: I have my choice of chemo on Monday or Wednesday. Do you tend to feel like dirt right away? Or good the first couple of days then bad on day 4-5?
Pam
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Hi Pam,
I have been meaning to respond to your other post, but life has gotten in the way. For me, day 4-5 are the hard ones. It is not immediate at all, except for that pesky headache. [Advil takes care of that for me.] The infusion time is short, but as you know, getting to the infusion can take some time. I have full confidence that you will figure out how to do blood work earlier, and then just saché into the infusion room at just the right moment. :-)
*susan*
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Pam, it depends when you want to feel the worst, during the week or weekend....Day 3 was the worst for me....but now I'm on such a small dose I hardly notice any side effects, just fatigue. My MO would have increased my dose back up if the clinical trial would have allowed it. I hope I'm getting a response! They pushed off the scans until Jan., every 3 months.
I've been on the pembro (keytruda) with the havalen (eribulin) now for 3 cycles since restarting it and my kidneys are fine, all labs good. My energy level is still pathetic, very discouraging....hoping once the cold is over I'll have more energy. My 10 yr. old keeps wanting to have playdates over but I'm not to encouraging, I feel like a kill joy....too much to do, not enough time & energy, but I want her to have time with her friends...
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Thanks Susan, KPW!
(Glad your kidneys are doing OK. That's the main problem with immunotherapy, isn't it? It wreaks havoc with everything else. Here's hoping the second generation of those will (a) be easier and (b) work on ER+ MBC)
Yes Susan, I'll have to examine the system. Since they want blood and need either an iv or port there may be no way around this but if there is I'll let you know. I just love twisting the system. It's one of my favorite things. It also gives me a sense of control.
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Hi everyone,
I’ll be joining the Halaven train shortly. Hope it plays nice with me. Any tips and tricks you’ve had work for you would be appreciated. I’ve tried to back read a bit to get an idea, but haven’t caught up just yet. I’m getting married in 3 weeks, have an appointment to have hair extensions placed in 2 weeks and am worried about how quick hair loss will happen. My first infusion will be next week and lucky enough my off week will be the wedding week. I did AC chemo and TC last year so I’m somewhat familiar with the SE’s, but you just never know
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Hello, everyone. I will be starting Halaven on Friday. I was in the process of waiting to get into a clinical trial but have been off treatment 2 weeks (6 weeks since last Doxil which is given every 4 weeks) and due to everyone dragging their feet it would likely be at least another 3-4 weeks or longer before everything is in place.
For those of you who do Halaven with cold caps, how long do you wear the cold cap after injection? I just spoke to the nurse and she tried to tell me I need to wear the caps for 5 hours afterward. That sounds very questionable. She also told me it takes 3 hours to mix the medicine after I see the doctor. I think she is exaggerating because she wants me to schedule an appointment earlier in the day so she can leave early. I did cold caps with Abraxane and only wore the cap 1 hour before and 2 hours afterward. I believe the power dose Abraxane I took every 3 weeks is stronger than Halaven on hair loss. Any experiences with cold caps?
Sierra, congrats on your upcoming wedding! Enjoy every moment of it and forget about this awful disease for those few hours!!! I hope the others can answer your questions re extensions. You may want to consider halo extensions which will not pull the hair if it will be too delicate from the Halaven.
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JFL, I did Halaven for 9 months and although it thinned I never lost it all.
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Anybody have issues with tumor marker going down one month and than go up 3 pts. next month ?
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Kimchee, my tumor markers stay in the low range and rarely go above normal but there is a 5 or so point range that I consider normal for me and they are never exactly the same month to month.
Started Halaven today. Super easy. In a lot of discomfort now due to cold cap. Counting down the minutes until I can take this thing off
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JFL I capped with Halaven and had great success...it will be worth it. Unfortunately I am going to move on to Carboplatin/ Abraxane and will be capping also. I am hoping I have success with this too, although the nurses didn’t give me much hope this time around ;(
I hope you feel well everyone
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My wife's long story cut short about her ongoing battle with BC, her ER/PR+ turned TNBC while 18 months on capecitabine. Her Oncologist felt that eribulin would work well for her and after 3 months while on eribulin her PET scan showed no cancer, it was all gone, whipped out. She'd had too many to count metastasis to her spine and hip from small sized ones to moderate sized tumors. She's to have another PET in two weeks. Nail biting time for sure.
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For those of you who have been on Halaven for a while, are there any no-nos or suggestions for managing side effects? So long as I have enough energy for it, is there an issue exercising the day or two after treatment? Is there anything that helps with Halaven neuropathy? I hear it described as a bit different than neuropathy caused by other drugs.
Mike, my fingers are crossed for your wife's upcoming PET scans.
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Hey there, JFL! Always good to get to wave hello to another old-timer. I've been on all the treatments in your list except for Doxil, if you count your Abraxane as equivalent to my Taxol.
My neuropathy budded with Taxol but has bloomed with Halaven. With Taxol, it was mostly concentrated in my fingertips, toes, and foot pads. With Halaven, it has rather quickly spread over larger areas. After my 5th cycle, it had ascended above my knees and taken over my hands entirely. My back/flank area was beginning to feel tingly, too. My MO wanted to see if it was developing into permanent neuropathy, so I was given a two-week break in early December. Toward the end of that break, I finally began to experience improvement-- I have recovered a good bit of feeling in my knees and shins again, though not 100%, and I am not dropping knives and such. I resumed treatment last week at a 20% dose reduction. Praying I can hang in there because all in all, Halaven has proven more tolerable for me than several treatments I've had (other than the not-small issue of losing feeling all over my body).
I am not sure what really helps, but after trying a variety of things, here are the 5 things I continue to do routinely:
1. I have continued the icing I did on Taxol but I think I need to start 30 minutes earlier than I have been, and then also leave the mitts and socks on longer after the push.
2. I cannot take Gabapentin which is sometimes scripted for neuropathy so my MO agreed to me taking GABA Calm (a supplement) instead. I take 2-3 lozenges nightly (it helps with sleep and anxiety, too), and I take a couple on chemo mornings also.
3. My MO told me to take a B complex supplement daily and then take extra B6 twice a day on top of that.
4. I go through lots of Penetrex cream, which is popular with diabetes neuropathy patients. It does seem to help.
5. I avoid hot baths for a couple of days after treatment.
What I'm going to try next: For Christmas, I was given a TENS unit for feet and also one of those nubby foot roller gizmos for neuropathy. I am also going to pull out my rebounder as soon as the Christmas tree is down-- I figure my lymph system needs it even if it doesn't help my feet. I am considering buying a Cubii desk elliptical (Amazon) to pedal while I work at my desk. Hoping these things will increase circulation and sensation in my feet.
As for exercise, I would advise avoiding anything that puts pressure on the hands and feet for 2-3 days after treatment. Also be conscious of your knees and quads buckling on you-- several of us have experienced weirdly collapsing knees (like when stepping off curbs or using stairs) and moments of surprising weakness in the large leg muscles.
All the best to you. I hope Halaven does you right for a long, long time.
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Hi Lulubee! Thanks for sharing your experience. I really don't know much about Halaven and moving onto this medicine all happened pretty quickly. Unfortunate to hear about the spreading neuropathy. I had a lot of motor neuropathy on Abraxane, worse in my feet, which had spread up through ankles and lower part of calves. My neuropathy improved but never fully went away. I do experience ankle buckling occasionally and will hit a wall after a short amount of time in wearing high heels that are on the higher side - my ankles feel too weak and too tight to continue stabilizing my feet after a while. I also have to take more care in keeping my body weight directly over my feet due to ongoing balance issues. I don't want to appear drunk at work
If I ever give up on trying to cold cap with Halaven, I will start icing feet and hands. I am interested in hearing how the TENS unit and roller ball work. I may look into those as well. 0 -
Well ladies, it's official. First dose on Wednesday. It's been almost a month since I stopped Verzenio/Faslodex which didn't do anything so it's been about 6 months since I was on an effective treatment.
I now have 'extensive' mets in my left femur. If the Halaven doesn't knock that right back I'll get radiation for it. Sigh. It sort of aches -- small potatoes really but it's my first cancer pain. [Yes, I've been lucky]
Crossing my fingers that this treats me well. Vitamin B6 here we come. . .
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JFL, I gave up heels in 2013 when Xeloda literally took my feet out from under me. Gave them all to my daughter and I definitely cried when she drove away. I was a shoe aficianado in my day but I wear only flats now. Sigh... but I recommend it.
Now I have a basket full of Skechers, velvet slippers in several colors, Uggs for cold days, and Tom's ballet-toe flats for warm weather. L'Artiste makes several unique and artsy styles that give the visual effect of wearing heels but aren't actually very high.
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Pajim- Good luck!! I had radiation on my femur right above my knee when I was first diagnosed- they were concerned that really any further bone loss and I would need a steel rod insert.
You are nearly six years out and the cancer is still only in bones? incredible..
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I am 8 years out and currently have bone-only disease as well, as far as we know, although over the years mets have flared up in soft tissue in three places-- ovarian membrane, common bile duct, and pericardium, each of which required surgery. These are odd destinations for MBC but I have super sneaky lobular mets. The ovary is long gone, the destroyed common bile duct was surgically restored somehow and has a 5-year-old large mesh metal stent in it, and the heart mets were whipped into submission by pericardiocentesis surgery and Taxol. Such fun, LOL. Onward we go.
Hang in there, Pajim!
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Thanks! I actually have a single liver lesion, discovered 6 months ago. So 5.5 years with bone only mets. And I'd like to get rid of the liver met. Sooner or later they're going to tell me to quit drinking and I really love wine.
Once more, into the breach!
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Lulu that sounds great (as far as stage 4 goes I think). Heart mets scare me as I have skin my in my chest & typically use my port. I think I have a a soft tissue tumor in my stomach (named Tabitha). Also been having a very sore pointer finger middle joint pain...say that fast. I’m holding on to the thought that who gets finger cancer!? On top of all the highly improbable cancer stuff I’ve had. I’ve promised if it is finger cancer mets I’m going to play the lottery. Who the heck gets cancer in their twenties, has it go to the lining of the brain & the skin on top of other locations. I’ve taken to listening more to the most u likely to happen vs the common SE’s or chances of something happening.
Day 1 of Halaven completed today. Praying hard it works. Went in for pre labs, once cleared I took some Dexamethasone (grr scourge of the steroids), then had my 2 minute Halaven/Eribulin infusion. So far I feel fine. Came home and cleaned most of the upstairs bathroom. Only downside is I seem to not be sleepy, what!? I’ve been sleeping like crazy so this is weird. Scans at the end of January.
Hope everyone is doing well. Happy New Year!0 -
Parry, glad your first Halaven went well. For my first injection last week, I was given Zofran but nothing else. Did your MO say why he/she gave you steroids? I think my MO adds Zofran to everything. I usually ask to have it removed but now that I am on cold caps again, I will keep it for now. The cold caps make me nauseous although the chemo does not. Here's to hoping your finger pain is joint pain. I do believe I had mets in my wrists when I was diagnosed. I pretty much had mets everywhere when diagnosed and any location that showed up on my PET scan as bone mets was a location where I was feeling pain. No surprises in the numerous locations of my bone mets. My hands are above my head and not included in the scanned area of the PET. Based on that, my wrists were never scanned but the wrist pain went away once I started treatment and my bone mets went inactive.
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JFL I coldcapped with Halaven too and was able to pull off my secret quite successfully, I thinned but was able to fluff and pin and nobody was the wiser. Just looked like really bad hair days ;( I am now about to begin Abraxane and hope I have the same success!
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My MO did prescribe some anti-nausea meds but the pharmacy was closed for holiday. So far it seems like no nausea though. I’ve had Dex b4 treatment in the past...maybe it was a precaution? I’ll ask next time. What’s weird is now my finger is feeling way better so who knows lol.
Happy New Year everyone
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Teachermom, if you are doing weekly Abraxane, you should have good results with cold caps. I did every 3 week treatments which are a much higher dose and pack a much bigger punch to the hair. I made it 6 months with cold caps on Abraxane by putting my hair in a bun and using Toppik to disguise some of thin areas in front or on top and then had to move over to a wig after that but am still glad I did it. My hair did continue to grow on Abraxane, including new growth areas, and then started growing back immediately when I stopped it. I think my 4 year old son would be scared and worried if I were bald. He does see that I have other hair that looks like mine (my wigs) but doesn't ask too many questions. I had to take him with me the other day to have my wig cleaned and told him we were going to a place with lots of hair for people who want more than they have, like longer hair.
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JFL how were your side effects? I am thinking of trying to convince my MO to do the once every three weeks vs. three weeks on one week off with Carbo, just due to life factors. But I am so heavily pretreated, and my liver mets are active...I am getting worried because I don’t have many more options left.
I know this sounds stupid, but my hair has kept my secrets, I don’t want to lose it, but I also want to live
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