Halaven - Day 1
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Pajim, I’m calling my insurance in the morning to see what they’ll cover before I hear from the nurse. GOOD LUCK ON YOUR SCAN!!! I’m tired of the driving - I always feel like I need a rest after driving!
Sarah, I have pretty good insurance, hasn’t been been much they haven’t covered and copays aren’t bad just everything has to be preapproved. Sometimes it’s a hassle but it’s saved me money. I wish they covered acupuncture. I hear it’s good for side effects.
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I called insurance this morning and they said they covered shots at home and even a home health nurse. I had to call the nurse and they said if I skip the shots then I’ll be at greater risk for infection. Well, duh. I told them I called the insurance and told them it was covered so now they’ll have their insurance person look into it. I need a new doctor.
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Pajim, how was your scan
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nouzay0- how are you doing? Haven't heard much from you?
Wandering- glad you can do shots at home. The travel every week would get old. Hard to drive she. Your that tired. Have you done any treatments at the reduced dose yet? Up till now you have been at full dose?
Fill you all in tomorrow about cat scan.
Sarah
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Yay on the shots! Well, once you get all the crew on the same page. They aren't hard to give yourself. The first time you just have to psyche yourself up to stick the needle in there.
Scans are done. See the MO tomorrow. I'm kinda surprised I haven't heard from him already but tomorrow is fine. I was almost 2 hours in the bone scanner. They had to do a SPECT of my thighs again. I did get about an hour's nap our of it. . .
Sarah how was your scan?
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Hi all. As of yesterday I'm officially a member of the Halaven tribe. I only got Zofran as a premed and the Halaven push itself was a breeze, as many of you mentioned. I always take the full bag of saline, but even so I was in and out within an hour. I thank God for my port, which I only got 3 months ago but wished I had it years earlier. I did cold therapy for feet and hands. I've got residual neuropathy from taxol/gemzar, hoping to keep it at a minimum. I'm happy I can drink plain water - on taxol it tasted so terrible (I know, water??) that I ended up drinking mostly iced tea. Hopefully that won't change in the days to come. Taxol/gemzar helped liver and lung mets, but my bone mets galloped right through that tx. Hoping Halaven works some magic. Sending hugs to all and prayers for good news scans ~ JL
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No steroids, Jaylea? I’m jealous! 😂
I hope this works on your bone mets, too and you enjoy minimal side effects!
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Still no word from my MO office about shots. The staff isn’t the most supportive when it comes to going out of their way. I have chemo tomorrow so I’ll see what they have to say when I get there. ☹️ Still needing a new doctor but don’t want to look for one. I’m tired. I walked to the bus stop (about 2 blocks maybe) and I struggled walking back - it’s all uphill and it’s hot today! 89 today. 🥵
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so... I'm probably off halaven. i had my blood work done and all numbers really went up. Tumor markers and the liver numbers as well. Went down for the scan and was called into see the doctor. I said it's not worki is it, I already know from the blood work. He said well from the scans, no, they are not gay bad. Some spots shrunk and a few got a bit bigger, if they were indeed, the same spots. It is hard from old to new scan to tell what spot is what. He said from the bloodwork stand point I'm Leary. It's odd it's going to so to me it's saying something else might be going on. He thought maybe a new spot of diffuse Mets look like it was coming. I have seem to have and new ones in a long time but the don't do enough shrinkage.i didn't say one lady said her tumor markers went up every time but scans were good and same with liver enzymes as well.
So I'm heading to Disney and talking another week off. He will test the blood and see if being off they go down any. I'm kind of doubting since I had an extra week of now.
The next plan is just gem or the new piqray. I said good bc it was in my list to check that out. A good month back he told me I'd have to go to Iowa city or Mayo Clinic for a liquid biopsy, they can do them here. Since piqray has been approved so has liquid biopsy's to test for the mutation to be able to get piqray. I did that.
I had to have my PICC line out as well. Normal time with them is 4 months and I go mine 10/15/2018 so I've been lucky. It kind of pulled out today so probably good to get it out. Didn't hurt at all and I feel free! Love having the thing bc of all the blood drawers and chemo right in it but don't miss it already! If I get piqray it will be a pill so wouldn't need it. It has to be paired with faslodex but I have not had that yet.
I really need to get these liver Mets tested. Nothing has brought them down in size but a little bit. I'm wondering if they are her2+ or triple neg bc it would open me up to more options.
I'll keep you posted! I ache so bad like I'm 90 and I'm tired and feet feel numb like I was out in the snow for 10 hours and you come in and they start to warm up again.
My tongue is fried. Nothing helps it. Numb and can't taste and things hurt it when I eat. Doctor did say it could be neuropathy, oh lovely!
Good luck Pajim I'll be back to see your results. Someone needs good news here!
Sarah
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Sarah I’m so sorry ab your progression and I hope they figure something out for you. I’m on faslodex and it’s not so bad. The worst part is that it’s two shots in the butt but only once a month. It’s an estrogen down regulator so you get some menopause symptoms. I hope it works well for you for a long time.
I hate the neuropathy! I feel like my legs are constantly falling asleep! My arms are affected too but my legs are worse. I worry about driving if it gets worse. Hopefully yours will go away after stopping the Halaven for a while. I’m interested in the Piqray but my doctor wouldn’t discuss anything on my last visit. I’d like to see how you do!
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Pajim, how did your scans go? Any surprises? All good?
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Sorry, it's been the week from heck at work. We were hosting a group of Chinese professors which includes dinners out, lunches, lectures, ay yi yi.
My MO said "scans are fine". Then he showed me the 'impression' [final statement the radiologists make] of the bone scan and it's full of serious ass-covering hand-waving BS. Apparently the bones are brighter than before, which could mean a lot of things. They choose to say it's 'flare', and "given the correlation with lowering TMs, is likely sclerosing [healing] bone". Need to 'correlate with future imaging'. I didn't see the CT results.
They're probably right. Probably. All you can really tell with bone scans is if there's more metabolic activity. I guess. Need to read up more. On Monday I can download the results for myself and read the whole thing. I simply forgot on Wednesday to ask about the CT results which will tell me if my liver met is shrinking. If it is I assume all this is doing me some good.
Meantime I truly enjoyed my extra week off. It allowed me to make it through a tough schedule. Today the wall has hit me and I could use a nap. I'm headed home as soon as I watch a video our fellows have made. Apparently there's popcorn with the video, yay!
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Sarah, I'm so sorry it's not looking good for Halaven! I hope you enjoy your extra week off. I did. It's amazing how much like normal you can feel. Maybe you can get the aches to go away? A few ibuprofen?
A liver biopsy might be a really good idea. Cancers do mutate, and it could open up some avenues. I keep muttering to my MO about a biopsy and he keeps saying "nah". He doesn't feel there is anything actionable. At least not until the new drug was approved. I haven't yet insisted. If there was a trial I wanted to enter I would insist.
Jaylea, welcome!
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Pajim,
Long work weeks are rough! Hope you get your nap!
Something that can make the bones light up is the csf shots because the are stimulating the bone marrow to make more white blood cells. At least that what it said on my report.
My MO office will not approve shots at home. It’s covered by my insurance but they don’t send shot prescriptions to an outside pharmacy. 🙄 Time to find a new doctor. I would love to find one that specializes in breast cancer and isn’t an hour away.
Everyone have a good weekend - I’ve got another week with the granddaughters here and it’s not too bad just tiring. Kids are a lot of work - that’s why I had mine when I was young!
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That's an idea! Even though it had been two weeks since the shots? My MO and I are going to have a talk about his definition of the word "fine". I read the reports today and can't figure out what the heck is going on. Maybe it was the GCSF.
The CT is straightforward. My 2cm liver lesion is now 1cm but I have two new baby ones. The bone scan report is full of gobbledygook. One thing it definitely doesn't say is that things are better. it doesn't really say they are worse either.
Sigh. But I'll be asking MO what the heck this all means. I see him in two weeks. I'm guessing this means scans in 2-3 months rather than six months.
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Checking in after my 2nd Halaven treatment. Week 1 wasn't bad at all. Worst day was Thursday after Monday infusion. (Is that day 3 or 4? Can never remember.) Head and body aches, burning feet, and while no nausea, did upchuck. I washed my feet in cool water and took a Zofran for good measure, and things settled down. This week I'm taking Zofran the first 4 or 5 days as a precaution. I have no appetite but had that going in, so not really blaming the Halaven.
Wanderingneedle, I was surprised too that steroids weren't prescribed for premeds. They never hit me very hard, and I weirdly enjoyed the momentary 'power surge'. Made me feel normal for a second...
Pajim, I'll be curious to hear the translation of your scans, but anytime your MO says they are fine, that's a great place to start.
Hugs to everyone ~ JL
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Pajim, maybe your reports mean you’re pretty stable? I print out my report and highlight all the things I want to know about when I see the MO because he’s always in such a hurry and I don’t want to forget anything. I google every term I don’t know and look at different sites to get different explanations of the same thing since some make more sense than others. I don’t really have anyone to discuss things with so I talk to Dr. Google! 😆 The term “fine” can sure sound dismissive depending on who’s using it. When my MO says that he really doesn’t want to explain but sometimes I push for an explanation. Another reason he doesn’t like me. 🙄
Jaylea, I hope this week finds you feeling better with your zofran! Maybe after this your body will settle into the side effects and they won’t be so bad. 🤞🏻I’m counting on my steroids this week to help me clean the house before my daughter comes in on Friday. I’m exhausted and even doing yoga is starting to hurt.
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Jaylea - I had my 2nd infusion of Halaven a week ago Monday. My worst SE's were on Thursday too! I'm sorry you upchucked. I felt just a bit of queasiness, bad taste in my mouth, and definitely the muscle aches. The worst aches I got were in my neck and shoulders. Very weird. I'm on my "off week" now and feeling better. I get hit with a wave of fatigue (tiredness) in the afternoon but it doesn't last long.
Pajim - I hate those "mixed results" scans. My last two scans have come back like that. One area shows improvement, but another is not... What the heck? I always try to look on the positive side of things but it takes a day (or more) to digest the results.
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Jaylea, when I get the "I don't feel so good and I'm achy" I take ibuprofen. 400 (doesn't take much). And when my stomach starts muttering I take Zantac. Technically the day of chemo is day one so you're talking day 4. For me on days 3, 4, 5 at 3:30 in the afternoon I take Advil. Because if I don't at 4:00 I'm going to get achy and need a nap. With Advil, don't need it. Totally weird.
I think "fine" means something in medical parlance. Basically that it's not bad, but it's not obviously good. And that [in this case] we're not sure what it means.
OK translation. I have a partial translation. Sent my report to our bone editor. Sometimes I love working for a medical journal. Experts on everything are around. [There are downsides too -- they watch me like a hawk. And sometimes no advice unless I promise to e-mail my MO.]
So. Here are some of the words from the scan:
"Uptake throughout the extension of the spine is more confluent in this study. Uptake within bilateral ribs is more extensive and heterogeneous (Same comment regarding my right arm and left thigh) There is interval increase in the intensity and extent of multifocal tracer uptake throughout the axial and appendicular skeleton, with increasing sclerosis on CT."
Friend who studies how bones build says that this is almost certainly flare and bone building. That if I just had more lesions they'd be spotty. Confluent means it's across the entire bone region. So entire sections of bone lit up, not individual lesions. Otherwise they'd have written about individual lesions. That's his rationale for 'not more cancer but more bone being built'. Both he and the radiologists are betting that the next scan shows healing. They did mention sclerosis (healed lesions) on the CT.
Thing is, flare after 5 months seems odd. And I didn't realize flare was a real thing. Not to mention that this could just mean things are going wild. But if they were I'd have high alkaline phosphatase (destroyed bones releasing phosphate into the bloodstream) and my TMs wouldn't have fallen. Sigh me. Optimist, I guess. My husband feels better.
May all your scans be easier to interpret. I'll ask MO in two weeks -- see if his answer matches the other doctor.
And in the meantime, needed two more IVs today to get the drug in. I've asked for a port. I'm tired of the needles.
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apologies for disappearing! Been a heck of two weeks.. so many personal disappointments to count here but life moves on I believe.
Anyways, I took two doses of Halaven so far and had my week off ...tomorrow I start cycle two. It seemed like every couple of days I was faced with a new riddle in terms of side effects. First week I experienced neuropathy, muscle aches, fatigue, constipation, weird pain in neck and shoulders. Second week a lump in throat, more fatigue, rash over chest and feet swelling. Off week had more swelling of feet and hands, weird knots around the nipple, more itchiness and now loose stools.
Obviously, I’m having some kind of delayed reaction to the medication so I’ll probably take steroids for a couple of days after each infusion. I’m already up late most days since starting Halaven abd probably steroids are going to make it worse.
I’m doing cold capping again with Halaven and it seemed to be working great but those past couple of days my hair is falling out so much it’s disheartening.. I maybe too stressed from my personal problems that cold capping is not working.. I don’t know.. I’ve been depressed lately even though I usually try to stay positive but I wasn’t in a happy place lately. I really don’t want my hair to fall out .. I know that’s a trivial matter to worry about in the grand scheme of things but I don’t think my little kids are ready to see me bald.
Anyways I hope it’s working for me as well as everyone on the halaven thread. I pray Sarah and Pajim get good news !! And of course anyone else who’s watching and waiting.. hugs
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NouzayO, glad to see you check in, but sorry to hear you've had a rough go recently. It's hard enough dealing with cancer, then add all the stresses of life, it's overwhelming at times. I'm with you on the bald thing. I currently am bald from the taxol/gemzar, and can't tell what's going on with Halaven and the few spikes of hair I do have. I have several hats, a great wig, and still hate every bit of it. DH says I'm beautiful, bless his heart.
Hope everyone has something good happen to them this weekend! Hugs ~ JL
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I've decided that Halaven is sneaky hard. I'm on my off week, but haven't gotten the bounce-back I'd experienced on other tx. The bloating has resolved, but I still have absolutely no appetite. I planned a couple of low-key outings (coffee with friend, lunch with sisters) and made it to both but was pretty wobbly. I'm sure that's from lower food intake and less physical activity. I'm working with my palliative doc on the appetite thing. Wanderingneedle, you'll laugh. One of the things she prescribed is a low dose steroid, taken only as a 3-day "burst" at the low point of every cycle. It gives me a low hum of energy.
Some treatments get easier with subsequent cycles, but haven't gotten a read on that from these boards. In the meantime, keeping my head up and working the plan. And always keeping you all in my thoughts and prayers.
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Jaylea, I'm sorry you haven't had a bounce-back. I've been at this six months and I definitely don't bounce like I did in February. On the other hand I DO feel better about day 17. Which gives me 4 days when wine and orange juice taste good.
Unlike some other treatments I have noticed that this one is a bit cumulative. I get a little more tired. But my extra week off reset a lot of things. I'm getting slightly different side-effects now. Less constipation, more issues with my fingers and toes.
I hope that as your week off goes on you'll feel better. . .
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Jaylea, I hope the steroids remain beneficial and don’t add another layer of SE’s to what you get from the Halaven. I’m AWAKE for about two days and it just sets me up to be tired for a while. When I tell the nurse she just says yeah that’s a bummer. 🙄 I hope your appetite picks up, at least for a time during your treatment to allow you to get some much needed nutrition. I still follow my keto diet for the most part and will eat a snack of cheese or nuts or berries except lately I’ve been wanting ALL THE COOKIES! They don’t really help but they taste good. I think it’s just craving carbs when I’m tired and this stuff makes me tired a lot
Pajim, I’m impressed how well you can track your side effects. I just know that I feel bad about 2 days after the first treatment and really bad after the second and start to feel better about 4 days before it all starts again. I do notice the effects are cumulative and I don’t have as many good days as in the beginning. I don’t always pay attention to how I feel and just keep going. My husband doesn’t even ask me how I feel - I think he’s afraid to know. 😆
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Cookies!! Bring on the cookies!! I wonder if it's summer? I've been eating more than usual too. I'm not worried because I've been dropping weight but I'm glad it's not just me.
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I made chocolate chip cookies with the grandkids 2 weeks ago and I think I ate more than anybody else. 🍪🍪🍪 I usually freeze a good portion of the dough for later batches but not this time. May make some more tomorrow since the next cycle starts Wednesday and I’ll get to enjoy them.
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With me it's wine. I have a four/five-day window where red wine tastes right. [White wine maybe a week]. I'm OK without the orange juice but I miss the wine.
Ergo tonight we are having short ribs in the slow-cooker so we can open one of our good bottles of wine. ;-) Luckily it's not 90 degrees outside. . .
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Yep, cookies sound good right about now. I've gotten some appetite back and am making the most of it. Pajim, great minds, we're having beef tips in gravy with mashed potatoes and green beans for dinner tonight, specifically so I can enjoy a wee glass of red. I try to spare my liver, but figure a glass every once in a while won't hurt in the big scheme of things. I worked in the wine industry for years and briefly crossed paths with Robert Mondavi in his later years. And that man still enjoyed his wine. His philosophy - wine is food!
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I wonder if it’s a taste thing - sugar is such a strong taste even when other things don’t taste good.
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Nurses told me that most chemo patients complain things are too sweet. Not to me -- they're too bitter.
I think you're right about the strong flavors. I find myself adding more salt to things than I used to. Maybe I should kick up the other spices. Hmm.
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