Halaven - Day 1
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Yes I remember that too, and I'm living it right now. In the old days I lost enough that my hubby says "can I shave your head, huh, huh?" He had the best time. . .
More than half of my hair is gone. Already I need a cap or hat. No idea how much is going to stay. The entire house looks like a dog is shedding.
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Good thing this time of year hats are in! I still have some cute ones from the first time around, but now have an excuse to maybe get one more once mine starts falling out as well.
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Check out SKIDA hats....they are made for skiing, nordic are one layer, alpine are fleece lined. Fun designs!
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They do look cute.
My hats and scarves from 10 years ago were given away to a lady in my office. She then gave them to another lady in the organization. No idea where they are now. Guess it's time to acquire a new collection.
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The hospital I go to gives free hats and wigs (not the nicest wigs honestly) to cancer patients there. I do still have my one cancer hat from before I bought online. Hair is still holding strong, but scalp is flaky so who knows...next treatment is tomorrow and scans are next week after #4. I need this treatment to work and am scared it’s not. I don’t even know what treatment would be next or what options are left. Does anyone have bad heartburn from Halaven? Just got some Pepcid today.
How is everyone else doing?
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Over the weekend I came back to normal, though now I'm down to 1/8 hair. Tomorrow they hit me with the start of cycle 2. There will be discussion about lowering the dose. I'm thinking of saying yes, with the idea that if it's easy we can raise the dose again for cycle 3.
I showed up to work today in a cap and no one blinked. So proud of them. One person (a friend) asked at the end of a meeting if I was doing chemo and when I said yes asked if there was anything she could do.
My Mom sent some caps. It makes her feel better that she's doing something. . .
Parry, good luck to you!
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Parry, great news your hair is still holding up. Do you know whether you are on the "standard" dose of Halaven, whatever that may be? I know of another woman who didn't have hair loss but I believe she was on a low dose. No hair loss with cold caps yet.
Pajim, glad your coworkers are supportive. Also, it must be nice in some way that if someone wonders whether you are going through treatment, they simply ask you rather than whisper when you are not around.
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Not sure JFL, but I can ask at next appointment. My CA-153 went up a few points so now I’m worried this treatment isn’t working either. My vision is also getting worse so got in for a brain MRI today. This journey is always a roller coaster! I wanna go back to the kiddie rides please. I honestly think the hair is lasting because the tape in hair extensions, but who knows...good thing do happen as crazy as it sounds. The. There’s the thought the treatment isn’t working so the hair isn’t falling out. I like your perspective about the coworkers as well. When I lost my hair before I hated the sad looks I would get and know ppl were talking. If you have a question just ask me 😊
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You'll all be happy to hear that what happened to me (and my hair) with the first cycle of Halaven is "not normal". They were shocked that I lost all my hair. My choices were to take the original dose again along with Neupogen for the neutrophils, or to lower the dose.
I decided on the lower dose. Promised my MO that if its "too easy", we can raise the dose again. So now I'm wondering. . .what's too easy? ROFTL.
It'll take two weeks to figure out if I made the right choice.
Here's hoping your hair holds up better. But since I had a reaction like an overdose [in many ways] I expect you all will.
Parry, I hope the brain MRI turns out OK.
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I started Halaven last week and had my second injection today. Originally the nurse practitioner told me I was going to get Neulasta for the day after my second injection. Today they told me my insurance did not approve it. Do the rest of you get Neulasta with your Halaven treatments? There is one other woman getting it in my treatment center and her insurance did approve the Neulasta.
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Liwi I do not, as of yet, get neulasta with my Halaven. I’ve had it in the past with AC chemo and it was approved by my insurance. I’ve done 3 infusions so far and my numbers are actually holding in the normal range for now so maybe my MO is waiting till I need the boost? Before neulasta and for some whose insurance didn’t approve the neulasta they used to give you an injection, but you had to go back to the infusion center the next day. I’ve nevee had it and have only heard about it as an option a few years ago when I was going to start chemo. Maybe it’s an option for you? There are also programs sometimes that can help pay for stuff like this. Try even looking into the makers of Neulasta. I had a treatment drug my insurance didn’t approve, but we were able to apply through the drug’s maker and get into a program they had that completely paid for a year of this drug. Unfortunately I didn’t get a response from it so I had to move on. There could be something like this out there if your numbers start to rank and you could really use the neulasta.0
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Thanks Parrynd1, good ideas, I will check their site. I also had Neulasta which was approved by my insurance when I did AC in 2014. I’m concerned because my neutrophils were at the very low end of nornal range today and I expect they will go down more after dose 2.
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Your MO can also send an appeal to insurance about the denial since you already have low counts. Do you know what their justification for denial was
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Liwi, I agree with Parry about sending an appeal. You may even ask for a copy of the letter the office sent that was denied to make sure it looks sound. I had a Stage 4 drug denied and literally fell off my chair when I read the letter the cancer center sent. It said I was Stage 2 (because in their patient history, they always refer to patients as their original stage) and didn’t mention any of the criteria I had that are necessary to take the drug. I wrote the appeal myself, which my MO signed, and it was ultimately approved. I don’t take Neulasta but my WBC is hanging in there okay after 4 doses of Halaven.
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Liwi, if your neutrophils are just at the low end of normal you may not need neulasta. I was told that they would get preauthorization "just in case" but there was no mention of giving it after the first injection because my counts were fine.
And if I hadn't had some nasty side-effects after the second injection they wouldn't have known my neutrophils were low either. By the time I got back to start cycle 2 my white counts were totally normal.
But my insurance did authorize it "just in case". Maybe your docs need to make a case that you need it? Or specify under what conditions they'll give it to you? It's not routing practice.
These days don't they give people the "thing" that sticks on your arm? In the old AC days I gave myself the shot 24 hours later. Pharmacy shipped the syringes to my home.
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my MO looked at my denial and they called their specialist who determined the claim a ‘cancer doctor’ so what qualifies them in regards to my cancer? Because any ‘cancer doctor’ should know how different each cancer and it’s subtypes can be
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Thanks all for your comments and suggestions. I called the insurance company and they said it wasn’t actually denied, had been submitted through their website and that they need more information. One of the chemo nurses called, gave them the information and then they said it needed to be forwarded to medical review. The nurse said the person she spoke with didn’t have any knowledge of chemo. They may want a peer to peer review with my Oncologist who said last time she did one with similar circumstances it was still denied. I’m getting the sense they don’t think it is absolutely needed and I’m not sure how much they will fight for it. And than they dropped the ball on getting the additional info to the insurance company until I pushed the issue. I will request a copy of the letters once a final decision is made.
In the meantime I’m choosing not to stress about it. My neutrophils dropped a lot, below normal range, on Ibrance and always rebounded in time for my next cycle so this may be a similar pattern. If I don’t need to take another drug at this point that would be a good thing.0 -
Insurance can be such a circus, but at least now you know more of what’s going on and can tell your MO to tighten their stuff up. Why even try to get you this medicine if you won’t fight for it?
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Ladies, how are you all doing? Tomorrow I go in to start cycle 3. Cycle 2 was much MUCH easier than cycle 1.
The coughing finally started to abate during week 3. I only got one mouth sore and it wasn't in a place that bothered me. Otherwise I felt pretty good!
I timed out the 'lows'. For me the first one starts 48 hours after the first infusion and lasts maybe 36 hours. The second one starts 48 hours after the second infusion and lasts 3 days. I have no idea if they equate to low white counts or are related to something else. I'm looking forward to figuring out whether it's a pattern. I love patterns. They're predictable, LOL.
Please, please let the cough be a left-over from the cold (now gone) and not a SE of Halaven.
Sitting here watching the first major snow of the season fall. . .
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This cold that causes lingering coughs has been going around. I still have a cough from last month. Here’s to hoping it goes away Pajim!
I’m officially off of Halaven and on to another treatment due to progression. I wish all of you ladies the best and hope hope hope this treatment works for a long time for you
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Shucks. The MRI didn't turn out well? I wish you the very best of luck with the next treatment. . .
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Founnd 2 new brain mets, lung as akin met progression. Was really hoping this would work, but I was only on the Halaven. The 2 chemos paired I’m hoping will get on top of the disease.
Is everyone here only on Halaven or did you pair it with another treatment?just cu
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Parry, sorry to hear you are of Halaven. I, too, was disappointed I had progression. I thought it was working. I question whether the results would have been the same if I waited my standard 3 months for a scan. Was 2 months too soon? Sometimes these drugs take a bit of time to start working. What will you be moving onto next? Beyond the trial I will be starting with erdafibitinib, my MO mentioned Gemzar or Navelbine as next chemos he would recommend.
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Parry, I'm sorry to hear that. Two chemos with different mechanisms of action might work. They pair the hormonals after all. But do any of these cross the blood-brain barrier? I'm too lazy to look it up. I assume they can cyber-knife the brain mets away.
We're in celebration mode here. My TMs are down 50% in two cycles. Of course scans will tell the story in a month or two, but for the last few years they've been pretty good at predicting how things are going. It's a nice Valentine's Day present for my hubby (who, being the awesome guy he is brought me roses today).
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JFL I worry about the 2 months being too soon, but my MO takes pictures of the skin mets to help keep track so I feel confident the progression is too great to say the Halaven is working. I’m on to Gemzar & Cisplatin. I haven’t heard of Erdafibitinib is it a hormonal?
Pajim woo hoo! Yay for good news 😊😊😊 As for the BBB I spoke to a Neuro Onc and he recommended the Gemzar so I hope it goes through! I’m still banking on the radiation to do most of the work. What a sweet hubby, love the smell of roses
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Erdafitinib is an investigational tyrosine kinase inhibitor. Which makes it a "targeted therapy". It's in the same class as Gleevec (the drug which stopped a lot of CML in it's tracks many years ago.
Google says it inhibits one of the fibroblast growth factors -- FGFR. I'd need to ask someone in my office what that means (or do a lot of reading). I'd assume there are tumor types which over-express FGFR and this will cause those cells to die. It's at the FDA right now for approval for metastatic bladder cancer. The Phase 2 results for that were close to the to-good-to-be-true range.
Looks like the SEs are mouth sores, maybe diarrhea, maybe skin changes. Of course you're looking for skin changes!!!
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I'm back with another stupid question . So my hair seems to be growing back in , I was wondering as anyone colored their hair while Halaven?
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Hello! I start Halaven next week since I failed on abraxane and reacted badly to doxil. Has anyone tried the cold socks/mitts for neuropathy and did it work? I used it for abraxane and didn’t get neuropathy until the 4th cycle but the study I read only mentioned Taxol. Since Halaven is such a short infusion I’m wondering if the cold socks will even affect it? I’m just trying to keep as much of myself intact for as long as possible. Thanks.
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Don't stop icing! My neuropathy got MUCH worse during 6 months of Halaven than it did on almost 2 years of Taxol. I iced the whole time with both drugs. The infusions where I iced less, the numbing got much worse. So even though it didn't curtail the neuropathy entirely, it did slow it down.
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Welcome Wanderingneedle! I'm in the middle of my third cycle. My fingertips have started to get sensitive. They don't hurt, but they're sensitive to sharp touches (like the edge of playing cards which is how I noticed). I've started taking b-complex vitamins on the "can't hurt, might help".
I've never tried icing during the infusion. If it works, it's a really short time to need to do it!
Aside from the fingertips I'm mostly down to minor annoyances. Stinky feet, anyone? And I have a cough after meals. Possibly I should take Prilosec on a regular basis.
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