Halaven - Day 1
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I think the advice on the acid reflux is great. Haven't had it yet on this drug, but had it bad with Xeloda. I was popping protonix or whatever the generic is.
Just had dose 4. My hair, which was lost with Ixempra, seemed to be coming back. Now it's like it's just stuck, not doing anything. And it's not at a great place for that!
I had stomach problems over the weekend. Have had nausea with this on occasion, but this was more. Drug? Bug? But it has passed. Overall, not been the great last week. Lost a close college friend last week (it was a shock), sick on the weekend, went to the funeral yesterday then got rear-ended on my way home from treatment today. Luckily, no one hurt but dealing with the car will be a pain.
Jeanne, I'm glad you got some energy back. Whoa! You did a lot!
Edited to add: After dropping 90 points last week, tumor markers skyrocketed this week (almost 200 points!). Doc says, don't worry, it's tumor flare, It's cells dying and flooding the bloodstream. I sure hope he's right.
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Well crap on the TMs - I'm definitely going with tumor flare and dying cells (burn beasties burn). Paula, I'm also so sorry to hear about your lousy week and the car accident. I hope this coming week is much much better. My hair got stuck for a while on Ixempra, but did not fall out. Now it's just a filled in chemo head look. I hope your hair starts to show some growth soon.
My onc only does TMs at the beginning of each cycle. So I have no idea what the TMs were today BUT I do have GOOD NEWS! While showering this morning before going to the onc for my second infusion, I discovered that a huge swollen cancerous lymph node above my left clavicle, which we have been using to measure treatment response, was either gone or way, way, way shrunk. I'm afraid to jinx myself, because I still have palpable tumors that were in the rads field, but they too have shrunk as well (due to rads). The only sour note was that my WBC was 3.3 (normal range is 4.1 - 10.9) and I have to have the crappy Neulasta injection tomorrow.
Hopefully this provides some hope for those about to start Halaven and those who are on it but have no palpable way of measuring a response. According to the PA in my onc's office, the two other ladies on Halaven in my clinic also seem to be doing well. And no hair loss yet!
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Jeanne, that's fantastic news about the shrinkage! And the hair! Boo on the Neulasta. I don't get it, thank goodness. I hated that stuff.
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I've had the flu like symptoms and very tired as well. I didn't have Neulasta after my 1st or 2nd treatment, I had nupogen injections for 4 days after the 2nd because they said the neulasta wouldn't have time to get my levels up within 2 weeks. I go back on the 9th for my 3rd treatment. i guess that would be cycle 2. My hair hasn't started coming out yet. This will be the 4th time, if it does, and I'm not about hair anyway, so it really doesn't matter to me. Each time I've lost it, it was this time of year, so I get to wear the cute hats and such. I have a hot head in the summer, so I have to go bald. If you saw my pic you can see, I have a big head, not a pretty site. (LOL) I started on protonics today. Seems to help. I'd had it once before when I had theraspheres directly to the liver and it didn't seem to work. Dill pickles seem to help also. Appetite has gone some too, but that is a good thing for me as well. I need to drop some weight. My energy seems to be better today than yesterday. We've been snowed in for 3 days, so I probably have cabin fever. Just need to be able to get out and gets some fresh air. Good to hear what each of you are experiencing. Hang in there. We can all get this together.
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PJB, So sorry to hear about your friend. I too just found out about a co-worker that passed away over the weekend from a long battle with cancer. He was a great guy and everyone will truly miss him. Sorry about the wreck as well. Will keep you in my prayers as you have to deal with that.
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Thank you so much for this discussion!!! I haven't started my Halaven yet due to low platelets but your posts have helped me set expectations. Jeanne, that is awesome on the shrinkage and hair, praying it continues this trend!!!!
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Jane, I'm gonna try those dill pickles! Wish you'd get over the flu-like stuff.
Hope, I hope your platelets fall into line soon.
Paula
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Thanks, Paula. I actually overheard my onc talking to the lady next to me during treatment (I was getting platlet transfusions) saying how TM jumps happen when treatments are working and that he measures them only certain days after each cycle .... I wouldn't read into your TM markers, I think they should be looked at before each cycle or sth like that ... and hope your hair decides to continue growth :=)
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So I had another nausea day yesterday. They just seem to pop up with no apparent schedule (day before I felt great - and that was the day after tx). Doc says to get back on Prevacid, so here goes.
I also asked if there was anything I could do to perk up my appetite. Nurse says nothing really safe and effective but doc suggests a glass of wine - works for him.
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Hi Paula...I often wonder how 'normal' people can whine so much about things - like losing a friend (I am so sorry for you in that), getting rear-ended (major bummer), and then the 'normal' bugs that go around - we get to deal with all the same crap with the added feature of 'the beast' and all the lovely treatments and se's that come with it! This may sound weird - but dang it - I am going to drink my 'whine' and I love that is what your doc suggested - getting permission for wine - how cool is that (was he also volunteering to be your designated driver...lol?)
Halavenites - I love it! Good one - I will quit calling you guys G--Force and use that term if I may.
Can we call your hair 'stable'? Not really progressing - not really NEH (no evidence of hair)...but staying the same - sounds like 'Paula's hair is messing with the Stable Boy' to me!
Goodness, it has to feel pretty good for you to think about all these travel possibilities - with the very real possibility of actually being able to go! That is awesome and your doc sounds really cool (not just for the wine suggestion) as he is so onboard with helping get your plans to work out. Nothing is better than liking where you go to be 'pampered' with this disease - so it isn't a 'spa' experience but I know I sure get treated with such care and kindness where I go, it is my alone time and I will take all the warmed blankies and soft, caring hands I can get! Sometimes, even a snooze.
Hey, I got an idea for the nausea - thinking back on 'morning sickness' - soda crackers and lots of tums. I didn't have 'morning' only sickness but I did have that instant out of nowhere here it comes nausea and those crackers were a lifesaver...just a thought (I carried around those little single pouches of the six sided little floaty crackers they give you with clam chowder - along with the soda crackers - the little pouch things worked better).
I think the treatment is kickin some cancer butt - for TM's to jump like that, it has to be like your doc said and a flare and your body ridding itself of the dying crap...oh, and mum is the word - I won't mention that unmentionable thing you mentioned in a previous post not to mention.
Hugs...LowRider
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Thanks, Low, that is a lovely post. Really.
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Well, OOPS. My tumor did not really evaporate. I was feeling in the wrong place. BUT it did shrink about 1- 1 1/2 cms. and no longer sticks out. And I'll still take that any day. Loved LowRiders hair descriptions (NEH, Stable, etc.) Yes, my hair can dance with Stable Boy, however I'd love it to do a jig with HG (hair growth!!).
Paula, I find that when I get nausea out of nowhere ginger ale (Canada Dry version - it's less sweet) helps as does chewing some dried ginger (just not too spicy). I know people suggest ginger tea, but the ginger ale seems to work better. When all else fails I take .5mg of ativan under my tongue and it works pretty quickly. Another option might be Reglan.
I haven't had any problems yet with my second Halaven injection, but yesterday, after the Neulasta shot, I took some Claratin and tylenol and it knocked me out. (Unfortunately I was playing bridge at the time!!) Last night I had those yucky Neulasta SEs, but this morning they seem to be gone. I had more pains in my tumor areas the first time around- so now I want them again and I'm not feeling them. Whine, whine and then some wine.
I think you have a wise oncologist!!
Rock on Halavenites!!!
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Hi All,
Well I've officially entered the Halavenites club. Got first treatment on Tuesday. They gave me steroids which kept me wired Tuesday evening so couldn't sleep. Are you all on steroids too? On Wednesday, I was just exhausted and yesterday I felt better in the am, but fatigue wiped me out in the afternoon and evening. I was hoping to feel more energetic this morning, but I'm still very tired. It's bumming me out since it's only the first week. Won't it be worse when it's cummulative? Yikes. But just hoping that it works. My oncologist doesn't like to check tumor markers for at least 6 weeks out because of those spikes and to make sure that it has enough time to work. Usually I wait 2 months between new treatments before doing tumor markers which has been good for me mentally. I try to not worry during that time. The good news is that not much nausea or reflux which I have had a lot of because of ascites that was in my abdomen. So hoping that this is a sign that it is working. Don't have much of an appetite. Annie
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Dang, my post just got eaten up. Her's goes again.
It's interesting that Halaven is delivered so many different ways. I think partly that has to do with it being such a new drug. When I was about to enter the trial last November (before it was FDA approved) there were no pre-meds involved. I think that was true of the original trials too, but am not positive about that. Personally I think steroids are overdoing it, but don't know your medical hx and am certainly not a medical professional. Maybe you can ask that you skip the dex at the next infusion and see how it goes.
Aloxi (anti-emetic) was given at my onc's office to the first two patients. However I didn't get any pre-meds (I am patient #3). I also think that fatigue is pretty common with us Halavenites (all 5-6 of us!!!) but for me I felt much better the few days before the second injection and fully look forward to the two weeks off and having more energy after my second infusion on Wednesday. I do hate the Neulasta injections, but my body has been through so many chemos, my onc's PA thinks my bone marrow is struggling along. And my WBC did drop under normal for the first time in months.
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Thanks Jeanne. The only thing I like about the steroid was that I was cooking dinner and doing pretty well that evening of treatment but if I can't sleep, than rather be pooped the first day. Glad to hear that you started feeling a bit better a few days before the next infusion. That would be on my weekend. With 2 girls ages 11 and 13 that have all day v-ball tournaments and basketball games, I'm hoping I can participate in some of those.
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No steroids or pre-meds for me, either.
I'm not sure what my WBCs and platelets and all do, altho I know they drop. Nurse just tells me if I'm "eligible" for the next treatment.
Jeanne, that's great about the shrinkage! Oh, that's wonderful.
Annie, I hope your energy level goes up. That just makes days drag, I know. I feel pretty good on this one most days, but I'm comparing that to my last chemo which turned me into a certifiable zombie. And Jeanne is right, it's GREAT to get past that second injection and look forward to a pretty "normal" week on the off week.
My onc, who used to never do tumor markers (tho now I know he secretly did them years ago and didn't tell me, but not very often) has turned into a TM freak. I get them every time I get bloodwork. Part of me wants to tell him not to tell me, but I know I couldn't live with that either.
You rock, girls.
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Ooooh, I like the thought of the tumour cells being tortured in a tumour flare. Mouhouhahahahhahaaaaa!
Aren't the non-chemo weeks lovely!
Hugs to all you sweet Havalen ladies.
Elizabeth
xox
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My pre-meds consist of benedryl, Emend for nausea and Aloxi for long term nausea. They used to give me decadron, but didn't this time around. So glad. Crashing after being on steroids can be worse than the side effects of the chemo. I agree about the saltines. I hate a whole pack over the weekend, and it does seem to help. After just 3 doses of protonixs, my acid reflux is gone. We will beat this and hopefully this drug is the answer. Wishing everyone a great weekend.
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Hey, there Halavenites! How are you all?
Well, my occasional nausea has been pretty well handled by the daily Prevacid. Except today. Something in the mix of IHOP, ritalin (remember, I'm trying not to be hooked on hydrocodone pill every day) and coke Icee at the movie did not mix well.
Went to IHOP because I wanted to force myself to eat a lot, eating being something I'm not too good at making myself do. Ritalin for energy. Coke Icee because I was feeling reckless (and at movie theater prices, why not).
Otherwise, things are not bad. I still haven't made it onto the treadmill, but at least the hangers are off of it.
Hope you are doing well,
Paula
edited to add: The King's Speech is a very good movie; The Green Hornet not so much.
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Haven't posted in a while. My bone mets pain has been bad lately. Had to call my onc and he prescribed morphine to add to my percocet. Today seems better. Pain is much less, but I sure am sleeping alot. Had treatment 1 of cycle 2 last Tuesday and I am going for treatment again Tues of this week, day after tomorrow. Sure hope this Halaven works for us ladies! Have a good remainder of the weekend!
Side note, my hair is still falling out. It is really becoming thin, but still not noticeable to warrent a wig or scarf. Keep you posted...
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Hi All,
Well, just sent home when waiting to get my second dose because of low white blood count. Very depressing. Never has happened to me before after 6 years of dealing with this. Had all the schedules worked out with the kids for the next week. Now have to ask everyone to help instead next week. I don't want to whine, but I'm depressed.
Was all ok with having treatment. Felt pretty good. All that really affected me was the fatigue. Now I know why so bad.
Annie
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Oh, that's frustrating, Annie! Makes me glad I have my blood tests the day before, so I know ahead of time whether treatment is a go or not. Can they do that for you? It's like they don't realize you have LIFE to live outside of getting treatments. Man, that would make me mad....
Leanne, hope the pain meds are working along with the Halaven!
Paula
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Annie, so sorry to hear about the drop in WBC and getting sent home without treatment. Just wondering: were they planning to give you a Neulasta shot after your second infusion?
So the Neulasta sent me to bed from Thursday afternoon to Sunday morning. Yech. I hate those shots. Otherwise, I'm feeling okay - a little less okay today than yesterday (it should be the opposite - this is my week off!!). No hair loss yet. I wonder when it would start if I were going to lose my hair.
Paula, how are you doing and how's your hair? I do hope it's decided to stick around!!! (I plan to see The King's Speech sometime this week. I've heard it's great.)
Leanneh, good to hear that the added morphine is helping with the bone mets pain and that your hair may only be thinning. I also pray that this sponge (Bob Squarepants) chemo will work for us all.
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Jane or is ti Janet,
There's those dill pickles. I looked pretty silly working at the triage desk in ER last week. I kept a puke bag in close reach, not for the patients but for me. My Manager noticed and promptly went over to the cafeteria and came back with a glass of dill pickle juice. She said to drink a couple tablespoons. Not long later, I noticed the nausea was gone. When it came back that afternoon, I drank a little more and it worked again. Love those simple, non-medication cures.
My hair is nearly gone. Funny thing though, that goofy peach fuzz on my cheeks, like where my son has massive sideburns, is going away VERY slowly. I still have eyelashes and eyebrows. I also have an adorable wig, and several cute hats and a few scarves. What a fun fashion adventure.
I too hate Neulasta side effects. I hate them so much that I called Amgen, the company that makes it and asked about reduced dosages. They are overnighting me some info about that. My WBCs were too low to get my treatment on Day 8, I got neupogen. WBC went from 2.8 to 10.1 in just one day. So I got my treatment on day 9 (yesterday) and am scheduled to go back for Neulasta today.
Neupogen is the short acting cell stimulator, 24-48 hours. Neulasta is longer acting and can only be given at least 24 hours after to treatment or 14 days prior to the next treatment. Wonder when the white count gets the highest after administration.
Carol
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I am going to have to go get some dill pickles, that's all there is to it.
Gosh, Carol, seems like maybe you could get Neupogen instead of Neulasta. Is it less awful than Neulasta? I remember back in the old old days of ACT in 2004, I went in for several days for Neupogen shots after treatment.
Shhhhh.... I think I have fuzz on top of my head. Not so much progress on the sides. I have about 3 eyebrow hairs and 2 lashes. I look sort of Star Trek-y, but....
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Wow.. dill pickle juice sounds like a good idea...
I am not getting any Neulasta or Neupogen shots, yesterday had my 1st dose of cycle 2... so far so good! I used to get Neulasta when I did AC + T when I was dxed at stage 3. The bone pain due to Neulasta was horrible.
On another note, my hair did completely fall out 4 days after dose 2 of cycle 1. I wasnt prepared for it, my onc had told me there would only be some thinning probably but it all came out. I got a cute wig and dont mind it so much now.
PJB- i hope your fuzz becomes a nice crop of hair soon!!!
Are you going to get scans after 3 cycles or 4?
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I'm so vain - yea yea, most important is for the drug to work, but it can work while I still have hair ..... so it does look like it is 50/50 with the hair loss? Here is my count based on Lowrider's categorization:
No Evidence of Hair (NEH) = 3: HopeToMakeIt, Cashew, Leanneh
Stable = 1: Paula
Progressing = 3: CancerKicker, Jeanne46, Janetwit
Note: If by one month from first treatment it hasn't started falling out in clumps, it probably won't?
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Based on past chemos and the 14-day rule, I'd say if you still have your hair after a month, maybe possibly you're good.
It looks like from their prescribing info that during the trial about 45 percent had hair loss.
HopetoMakeIt, I see the onc on Tuesday (starting round 3) and we'll discuss scan date then. I'll get TMs again Monday and we'll see if they have come down the rollercoaster. I suspect that'll have something to do with it. Here's hoping after the big drop then bigger jump, it's back down again. I think 0 sounds good.
So I seem to be on a rollercoaster, too. One day I'll feel fine. The next, very tired. The next fine. I should start to keep a journal (something my sister has been urging me to do since 2004 original diagnosis. So probably not likely)
Hope you guys are having good days. It just got really horribly cold here, blech.
Paula
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Paula, hope the TMs drop way down Tuesday. Was thinking the fatigue should be none on the off week, but guess no, huh? I'm still waiting for platelates to come up so I can start Halaven - my 3rd week since carbo/gemzar/avastin, everything WBC, platelates, etc low despite Neulasta, still fatigued ... Halaven seems gentler although the fatigue, when do I get energy, ahhh .....
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45% lost hair huh.... of course I had to be part of that group.. but anyways, DH really likes the wig, so thats a plus
PJB - Hope the tumor markers come down and yes 0 sounds really good!! I am probably going to be scanned after 3 cycles, my onc does not do tumor markers at all.
I am feeling some fatigue with Halaven and finding that 20 mins of walking on the treadmill is helping... just have to force myself to do it everyday
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