Halaven - Day 1
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Irish, though I was not included in your "hi" I hope that it is okay for me to respond. You ROCK!!!! How amazing that you remembered this small detail from a post by LindaE, and then made the connection, and then advocated for your sister so that she has a positive outcome. I am in awe. Yogurt and soup isn't a bad way to head towards health.
*susan*
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Yes, Irish, I am with Susan on this. As someone who has a brand new whopper sizzling on C2, I took careful note of your sister's experience. Hope I never need to know about this particular problem, but if I do, I hope I remember what you shared.
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IrishTwin- thanks for sharing your sisters and your experience. I learn so much from everyone. I am thinking about you both and hoping for a good week for everyone.
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First Halaven today. I am very pleased at the prospect of no premeds on this one because on Taxol those were almost as hard on me as the chemo. I don’t metabolize steroids well and Benadryl was the gremlin that ate Mondays for the past 20 months. Good riddance!
My onc wants me to keep icing my hands and feet, though. Dang it. Since it’s a fast push instead of a slow infusion, she said to start icing as soon as I settle in the chair to wait for my lab results and pharmacy orders to arrive. She says since I already have some neuropathy from Taxol, it could just get worse on Halaven. So that’s a real bummer—I’m so so tired of hauling the cooler and not being free to use my hands. Whine whine.
She ordered neupogen or neulasta to be ready for me next week, I guess just in case my labs are wonky. I’ve never had that. Have any of you needed it? What should I know? She suggested I take Claritin if I have to take the shot
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Susan, I apologize for leaving you out! Please forgive my sleep-deprived brain :-( Thank you so much for your kind words. I wish my memory were as good as that :-( I actually searched on this site for swollen tongue and headache. Because LindaE was also from Quebec, and her treatments had tracked along with my sister's and she often gave us tips, I looked at her post straight away. There she described the same symptoms as my sister, and at the end of the thread, the diagnosis. Seeing those posts again, right when I needed them, made me feel like she is still here helping us.
Lulu and Ann, thank you both so much for reading this and saving it in your minds for the future. I'd be so glad if some of what we learned is useful to others, even though I wouldn't want you to need this information yourself. Lulu, I hope the Halaven goes well for you. My sister did have Neulasta but 10 years ago, when she was on her initial chemo. I think it might be Neupogen for Halaven because Neulasta is once a month I think (good for chemos that are 3 weeks on, one week off) and Neupogen can be injected daily on the days you need it.
My sister is having her second dose of Halaven tomorrow. She was supposed to get radiation treatment of her skull mets but we found out this morning the scanner is broken :-/. They don't know yet when it will be working again, so they thought the safest thing was to move the Halaven injection up a day, and do the radiation on her week off next week.
Thinking of all of you!
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So, CT scan did show liver responding nicely to treatment, one met remains and it is smaller, the place on breast/axillary where it recurred showed skin/soft tissue/musculature thickening....they aren't sure what to make of that. No new active disease shown.
I did receive the pembro and eribulin last week, same flu like symptoms on day #3-4...low grade fever, aches, headache, NO energy. Oh, and my thyroid is now no longer working. I started having issues with it acting up just before I started this trial, so, I'm not sure it's to blame. Started on synthroid....hope it kicks in soon.
Was scheduled to receive Eribulin today, but had to have it held due to increase in neuropathy in fingers. I hate to hold it, but I couldn't open the Advil bottle, typing is getting difficult and I am fumble fingers. It tingles, is more intense now instead of numbness.....I don't want it to get worse.
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KPW3, I could not tolerate the gabapentin that was prescribed for my neuropathy, so I did some research and learned that many people found taking the amino acid GABA is quite effective and without the side effects of gabapentin (which can be permanent for some people). My onc is all in favor of me taking it instead.
The brand I like is Source Naturals’ GABA Calm which I get from Amazon. Two lozenges per night; I let them melt in my mouth as I get into bed (helps me calm down) plus one or two before an infusion. I do think it has held my neuropathy at bay and perhaps helps keep it from getting worse.
I also just started using a balm called Penetrex that has good reviews from diabetes patients with neuropathy. I am not ready to opine on that one yet; time will tell.
Maybe worth a try to get your fingers back. All the best—
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Lulubee, Thanks! I'll ask. My oncologist just left this hospital for one across the state and I have someone new and I don't know what his opinion is. The first one wasn't too thrilled (discouraged everything or said nothing worked). While on abraxane, I was using gloves, but for a 5 min. push with the eribulin I didn't think they would help much.
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Hi all- well going off havalen and on to a clinical trial. Two treatments in six months have not done the job. Could say a few choice words here regarding my disappointment but I know you all get it without the added verbal tiraid. Am I gonna miss havalen - not so much...but wish it would have worked for at least a little while darn it. Though I am hoping forthe very very best results with this drug for everyone!!!
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Hi all- well going off havalen and on to a clinical trial. Two different treatments (I/F and then Halaven) in six months have not done the job. Could say a few choice words here regarding my disappointment but I know you all get it without the added verbal tiraid. Am I gonna miss Halaven - not so much...but wish it would have worked for at least a little while darn it. Though I am hoping for thevery very best results with this drug for everyone!!!
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Hi all- well going off Halaven and on to a clinical trial. Two different treatments (I/F and then Halaven) in six months have not done the job. Could say a few choice words here regarding my disappointment but I know you all get it without the added verbal tiraid. Am I gonna miss Halaven - not so much...but wish it would have worked for at least a little while darn it. Though I am hoping for thevery very best results with this drug for everyone!!!
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Ann, I’m so sorry to see you leave Halaven behind. You’ve been so kind and responsive to me this first week I’ve been here on this thread with you. Thank you for that.
I wish you the quick magic bullet in the clinical trial! What drug will you be getting?
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KPW3 I am so glad to hear about the good results you are getting your liver tumours. I hope it's the Halaven that's doing the trick since my sister's not getting Keytruda, and her baseline scan showed a lot of liver progression. I am also really sorry about the neuropathy, and hoping you find something that works.
Ann, I am sorry that you're moving on from Halaven. I really hope the clinical trial works for you. My sister tried to get into two trials before trying Halaven, but in both cases ended up being ineligible. Good for you for getting in, and I hope it does better for you than the other treatments. Would love to hear about it.
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Thanks Lulubee and IrishTwin- will be going on the Alisertib with/without Fulvestrant. It’s phase 2 at Mayo. Haven’t seen very positive posts about it on other threads but my MO has patients that have shown stable disease or tumor shrinkage on patients that are hormone and chemo resistant. So gonna give it a try. Hope to see you around...thinking of you with warm wishes
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Ann, the trial I just left was a Phase II study of Taxol with/without Alisertib. I was in the Taxol-only arm. No data has been released from the trial yet. I think the only way to get Alisertib is through clinical trial. I hope it is rocket fuel for your healing.
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Oh interesting Lulubee! Wish we could see some results soon...such a crap shoot. In this trial if I am not randomized to the Fulvestrant arm initially - when there is progression I can stay on the trial and get the Fulvestrant too. Unfortunately have to have another biopsy - third one in six months. Oh well
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All of a sudden, this thread is active!
Ann, I am also sorry that Halavan wasn't your perfect drug. I too am on a Phase 2 study, localized to the Boston area and Spain. Totally different one, but since I am not getting the "addictive" drug, I too will have the option to get that should/when Halaven fails. It is an interesting option.
Lulu, really? you have to continue to carry ice with you? However, given how my hands and feet feel today following yesterday's infusion, maybe I should be carrying ice as well. This was week two of cycle 3 and within hours I could feel my feet responding. By 10pm, my fingertips were the next victims.
Irish, my 15-3, which seems to have replaced the 27.29 at my hospital but maps closely, are on their way down again. I hope this means that this drug is working for me, and I certainly hope that it works well for your sister.
The other requirement of my current clinical trial is regular scans. I am not generally a big scanner, but I don't get to negotiate this point and stay on this trial. Turns out I am going to be scanned on my off-week.
Doorbell......
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Susan, same thing happened to me. I didn't take my Elastogel mitts and socks on Monday, so I got the Halaven push without icing. By that night, my feet and fingers were noticeably more numb and still are today. So I repent, I repent. I'll be packing the little cooler again next week.
Question about hair for all of you... I have an inch+ of fluffy goose feather hair that grew in while I was still on Taxol. If it's going to fall out again on Halaven, I'd just as soon buzz it now because I do not want to go through that mess ever again. What should I expect? Are my feathers gonna fly away in a week or two?
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I am still in full duckling mode after three cycles. My PA says 50/50 shot at hair loss, so I didn't buzz. It is not a attractive look, but at least the top of my head doesn't burn.
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Same here with the hair (Abraxene to Havalen)....it's falling out, think older man with spots missing on top, toward the middle...but with a cap on people can't tell. I'm started on cycle # 4 and just had one infusion, 7 infusions of Havalen...I think. It seems to be still coming out when I rub my head against things (tub), but not a large amount at a time.
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After 1st injection on Monday:
Day 1: Had a little flare of oh-no-you-didn't in my liver/tummy area at bedtime, about 10-12 hours after injection. Not pain, really. Just tight and uncomfortable. Drank a ton of water and took a shower, and it eased up.
Day 2: Light headachey feeling, really thirsty. Some fatigue. Took Advil.
Day 3: More noticeable fatigue today, pacing myself more. Should plan to take a catnap after lunch from now on. Seems like half my taste buds went out for a drive in the country but it's not quite like the metallic tongue like I had on Taxol/steroids (at least not yet). Ergo, not much appetite.
Then at 5PM: HELLLLO, flu-like aches! Oww! Bit the bullet and took a vicoprofen at 6PM--I don't take the hard stuff regularly, but this level of ache is sufficient to make me cave. Will plan to take it pre-emptively at noon on Day 3 next week. Would love a hot bath but it might be too soon after injection for my neuropathy; I mean, that may not matter much but I usually wait a few days after chemo to take a hot soak.
So far no diarrhea, no nausea.
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Lulu,
SHOOT! Just lost a whole post to you, but I have to crawl into bed. Will try to respond tomorrow, though I will have a two year old grand to watch.
*susan*
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Second dose of Gemzar today, then off a week. EXCEPT, my liver enzymes are twice as high as they were last week (previously it was around fifty, now it is around 100). Doctor said that that is not too bad, but that she wanted me to come back next week for a quick blood draw to check them again. I guess elevated liver enzymes can happen if the tumors are growing. ☹️ She said it might be just because I just started this new drug. Still, I am freaking out on the inside. Trying to remain calm while I am getting this infusion. I really hate this not knowing - hoping for the best, fearing the worst.
The good news is that the Gemzar has pretty mild side effects, so hopefully it is working and I can stay on this for awhile.
I will try to post next week (September 10th) with the blood results. Positive thoughts, please
--Liz
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Quick update: Gemzar side effect - flu like symptoms 6-12 hours after infusion. First infusion - very mild, barely noticed symptoms. 2nd infusion, is kicking my butt. Definite flu - like. Headache, aches and pains EVERYWHERE - legs, hands, body, arms, sensitive to light, hot behind the eyes, cold and warm at the same time. Ibuprofen, then naproxen on board, tramadol for the pain. Ice pack for the head. Not the worst I have ever felt (due to chemo), but probably in the top five. I expect I will feel better in a day or two. Fingers crossed.
Have a great labor day weekend folks. Thanks for reading. ❤️
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Hi all - I wanted to check-in to see how everyone is doing and to give you my Mayo update. Boy I have missed a lot on this thread - sorry to see Teachermom, Ann, and Liz moving on to other meds, although Liz I’m happy you found a home here. 😀
Lulubee, welcome - I will say my first Halaven cycle was my worst. I guess our bodies are trying to figure out what the heck is this foreign crap we infused in it. In general, Days 3 & 4 were always the worst. Just overall blah and didn’t feel well but no specific pain. After one year on Halaven, I never did develop neuropathy, for which I was grateful. I didn’t do any icing of hands or feet either. I lost about 70% of my hair. The 30% I kept was all over my head, not in patches, and did grow. I shaved it periodically and had to wear a cap or wig, as you could see right to my scalp.
Just found out Friday that my Mayo biopsy of a large lymph node in my stomach is slightly ER+, PR-, and very HER2+. Previously my cancer was very ER+, PR+, HER2-. So, it has changed! Mayo MO, my MO, and I were all very surprised. I was not expecting that at all. Mayo MO says that it only happens 15-20% of the time. My doctors were very pleased at the change as they said it opens me up to new chemo/drug options, which I needed at this point after being heavily treated for Stage IV ER+ cancer the past 4 1/2 years.
So, new plan for next treatment. In addition to Navelbine, I will be getting Herceptin. I may still have the other BC that had the previous properties, so we need to have a 1-2 punch. I’m ready to get back on treatment after a month off as my stomach looks like I’m 4 months pregnant. I need my treatment to knock this cancer back!
Shout out to Susan, Irishtwin & KPW3. I truly hope Halaven can give you a long ride. Sorry if I missed anyone else still here. This thread is moving quickly now, which is great!
❤️ Southern
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Ann - good luck with the Alisertib. I really hope it works for you. I hope that Alisertib delivers for you and if you are on the fulvestrant arm in this trial, it works for you when you get it. My sister was on fulvestrant a while back and got a nice, long, non-toxic-feeling run out of it.
Liz, I am so sorry about the Gemzar side effects. Your description sounds brutal and still it only makes the top five for chemo misery. You are tough. I really hope the ice packs, naproxen and time can do the trick. If not, I hope your pain team or whoever you have helping can get you something stronger.
Lulu - so sorry too about your side effects. I think you were right to skip the hot bath to try to ward off neuropathy. Also think it is a good idea to take the pain meds pre-emptively. We were having a horrible time managing my sister's back pain, but deciding to head off the pain before it had a chance to start worked better.
Southern - so happy for you about your Her2 status! Bring on the Herceptin! Good for your doctor for doing the biopsy. My sister is Her2 equivocal with two methods of testing, so Herceptin hasn't been an option thus far. Wondering how they chose to biopsy a stomach lymph node? I think we'd get resistance from the Onc here if we asked for another biopsy. My sister's last biopsy was 2015 and she has new tumours, including a couple of easily accessible ones. If she did request a biopsy, I wonder if it is more important to get an abdominal tumour rather than a shoulder one, since the abdominal one will have more consequences. Is every tumour's status a proxy of all other tumours? Or is it possible, if you are switching over from Her2- to Her2+ that the switch starts somewhere, not everywhere, and one tumour could be Her2+ and another Her2-?
This is my sister's week off Halaven (doing radiation in the gap). Then hopefully it's cycle 2, if the white blood counts hold up (often a sticking point for her).
Thinking of you all and wishing you all peace of mind and body.
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Liz, how are you now? Hoping you’ve turned the corner and you’re feeling better
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Irishtwin,
I wanted to give you my experience about biopsies. Since original diagnosis of BC in 2007, my BC has always been ER/PR+, HER2-. BC was originally tested in 2007, then again in 2014 when diagnosed StageIV, and then in 2015 when I had stomach surgery.
I’m the one who told my MO that I wanted a new biopsy done because my BC had just progressed again in July and it had been 3 1/2 years since my last biopsy. Neither my MO, Mayo MO or I were expecting my BC properties to change. I really wanted the new biopsies for the Foundation One testing (Mayo now uses Tempus instead of Foundation One) to give me the mutations that my cancer has, in order to use that info for clinical trials. My BC is only in my stomach (therefore no where else to biopsy) and Mayo only biopsied one large abnormal-looking lymph node, since it was a delicate place to be doing a biopsy anyway. It is certainly possible that other cancer in my stomach still has the previous BC properties, which is why we are doing both Navelbine & Herceptin.
I would think a biopsy would normally be done in the safest place where your cancer is. If it’s been 3 years for your sister since her last biopsy and she has had progression, it would be reasonable to request another one at this time. Definitely can’t hurt to request this. I’m certainly glad I pushed for getting another biopsy done.
Best wishes - you definitely are a great support for your sister. You bothare very lucky to have each other!
💕 Southern
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On Sunday, I was going to write a chipper post about how much easier cycle 3 was for me. That was Sunday. So let me review. The foot and hand neuropathy has gotten worse for sure. I was rather astonished when was going out that I could no longer "feel" my sandals and slip them on. Instead, I had to watch my feet and direct them with my brain. Digestive system is behaving, though if I eat too much in one sitting I get acid reflux. As a result, i am disappearing a bit. (Very odd feeling for someone who has always been a little too big.) I still have hair, and in fact, might need a trim soon. Energy levels have been fine. And then yesterday, clearly my blood counts tanked. I am so tired. I have a terrible headache. I actually had a coke today [Mexican] hoping that the caffeine and sugar would help. It might have. Or maybe a protein-heavy dinner [small as it was] is helping.
I am finding hot weather really wearing on this drug. Is this true for others?
SouthernSurvivor, none of my mets are in a location that a biopsy wouldn't have potential significant issues, so we keep treating what I had back in 2005. The research nurse on my current clinical trial tried to convince my oncologist to biopsy and got absolutely no where!
IrishTwin, I hope that your sister's off-week is going well and that her white blood counts are holding up well.
Lulubee, need to hear from you. You are in the middle of cycle 1 which I found to be quite hard and had me doubting my reasons for living! Please check in.
Kris, I have never heard of half the drugs you are taking to manage side-effects but am way too fatigued to do the research right now. It has been a "day or two." Any improvement?
*susan*
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Hey Susan and all-- yes, I had the second injection today so here we go, once more into the breach. I think I left off chronicling with the evening of Day 3 after the first injection, when I suddenly got hit by the painpalooza truck. Yeah. Whew. That was pretty bad, and vicoprofen didn't faze it. Just made me care a little less but the pain was definitely still happening. Flu-like aches coupled with bones on fire. I tried the lidoderm patches that I keep around for bone mets pain. Not much help. So after a while I took off the patches and tried taking a nap on my biomat. The heat seemed to help. I for sure kept my feet and hands off of the warm mat, though.
Susan, you say you had a spell of doubting your reason for living... well, that's interesting because I definitely had a wave of low mood mid-week, just a day of feeling unusually despondent and discouraged. I reminded myself that other TX have had this effect on me at times and it would pass-- and it did. I'll be looking out for that this week and I have written notes to myself in case it recurs... "go rest, watch something stupid like Monty Python, call a friend, FaceTime the grandbairns..."
I turned a corner on Friday which was Day 5, and the weekend was okay. Pretty tired as per usual, and I notice that I can't eat much at a time without it trying to come back up a little, but otherwise things were fairly okay. My taste buds are still a little flat, I think.
So today I got slapped with a neupogen auto-injector pod thingy on my tummy. I feel rather like the Bionic Woman from the 70's TV show. I can take it off tomorrow night after it pumps the rocket juice into my belly at hour 27. I'm to take Claritin for three nights. Apparently the orders on file are for me to get one of these fancy pods with every injection.
Susan, do you get these? Maybe you need a boost of WBC??
Thanks for checking on me and I'll let you all know how it goes. Y'all do the same, okay?
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