Halaven - Day 1
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Well, wanted to post yesterday but that survery wouldn't let me on this post even after I completed it! That's interesting about doing the markers the day before Paula. Now I understand the difference between Neupogen and Neulasta. Man, from all of your comments, I don't want to have Neulasta but all of my counts are really low. I was at 1.7 on WBC and anemic and low on platelets. And now my ascites has come back in my abdomen. I'm very down. I haven't been anywhere since Tuesday since they want my WBC to be higher. I'm going to go for a walk in a little bit because it's sunny (I live in Portland, OR) and it probably will do me some good. So, maybe need to get drained on Monday and see what my counts are on Tuesday. Also, has any one of your Doctors just decreased the dose due to low blood counts? I'm a bit nervous doing that. I just want this to work. So far, no hair falling out but only got one dose.
Annie
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Annie, I'm sorry you've been stuck at home! Ugh, major cabin fever. Good for you to get out walking. I walked around the block today (it was 60 degrees!) and it left me breathless. Sort of embarrassing. But I'll work on it. You guys are a good influence.
Annie, hope you get that WBC back up (and rid of that ascites). I know what you mean about the WBCs. I swear I can't believe there's nothing but rest that can bring them up! Too bad it's not chocolate or wine or cookies....
Hubby is sick with a nasty cold days after son was sick with stomach bug. I'm treading carefully.
Took half of one of my "magic" pills to pep me up some. Taking my mom out for her 79th birthday. She's the fittest 79 year old ever, probably. It's a little embarrassing, too. But good when I need someone to lift something too heavy for me,
Best to all of you.
Paula
I got stuck in that stupid survey loop, too. Even took it twice to try to get rid of it. Had to change browsers....
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Hello fellow halavenites. Glad to hear the dill pickle suggestion worked. My dad makes them every summer an actually told me to try that or pure vinegar. I opted for the pickles. My hair started thinning last weekend and was so thin on the sides that I just shaved my head yesterday. I was tired of hair all over my clothes and in my face. I've been so confused about how halaven is administered. I finally figured it out this week. I'm going to blame it on chemo brain. I had my 1st dose of round 2 on Wed. Go back next Wed for 2nd. They'll probably scan me after the completion of 3 rounds. They'll give me my xgeva and either neulasta or neuprogen next week as well. I've not had any bad side effects. Just want to sleep all afternoon and haven't been out of the house. It's so cold here, it's hard to get motivated but I'm determined to go to the mall tomorrow. Now they're predicting snow again for next week.
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Well, good to know about the dill pickle juice. So Jeane, you're saying you don't get bad side effects from either neulasta or neuprogen? I'm sure I'm going there tomorrow so hoping. I'm getting the ascites drained tomorrow. Not too much fun. And hoping that I can get chemo too. What a weird sentence!
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Hope you guys are doing well... TMs are down just a few points, but at least they weren't up another 200. I'll take it.... for now. Next cycle starts tomorrow, and we'll schedule scans.
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I'm still hanging onto my hair, but it doesn't seem to have grown much in the past few weeks. (I like "growth" rather than "progression"!!). If my blood work is okay, I will start cycle #2 on Wednesday (that would be 21 days from the start). I had it done today so I don't have to drive up to my onc's office (an hour and a half away) just to get sent home! The Neulasta injection put me to bed for two and a half days last weekend (UGH) and this weekend, when I should have been having fun, I got hit with something that has knocked me out for the last three days. Low grade fever, mainly in afternoons and evenings, ZERO energy, not much appetite, achiness all over, slight cough, and difficulty staying asleep (weird dreams and hot flashes or maybe fever breaking). Hubby was sick earlier in the week.
Paula glad to hear the TMs are down - if even only a few points - hope you have a good cycle and the fuzz (shhh) keeps growing in.
I also got caught in the stupid survery loop, so just decided to leave the site until another day!
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Annie - Hope your counts come up soon ... neupogen/neulasta is not really bad for everybody, I have had no issues with either and if you do get them I hope the same for you. If you are too anemic they may give you arinesp as well, which I have had with no bad se. I am struggling with counts although it has almost been a month out since my last chemo (different combo) mainly with platelets which they have nothing for ... really hoping Halaven will be gentle on me so I can stay on schedule.
Jeanne - I like growth too, progression has a bad vibe :=) Hope you get energy back up soon!
Paula - Yae for the TMs being down and hoping for bigger drop next round!
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So, did they automatically give you guys Neulasta/Neupogen or only after you had low WBC? It pains me to hear how much it can pain you guys.
Saw onc today, am going to have scans on Valentine's Day. Results the next day. So we'll see what's really happening. Gulp.
I have to say, on Ixempra and now on Halaven, I've had the return of hot flashes. I meant to ask onc what that meant, but forgot..... Weird, haven't had them since had the old ovaries out and started Femara back in 05. Or 06, whenever that was. Chemo brain!
Have a good one girls,
Paula
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Hi, ladies! This is a great post and I have gotten wonderful info. from
it. I will be joining you on Halavan on Monday. I sure hope it works miracles!
Susan J.0 -
I was automatically going to get the Neulasta, but just before the second infusion, wriggled the PA into being flexible if white counts held up. Then my blood work came back with a WBC of 3.3. That sealed the deal. It could be that neupogen is easier on the body - but the cost can be prohibitive. If insurance requires that you get that from the oncologist it would cost (me) $15 a day times 5-7 (or however many shots are required) days vs. just one $15 co-pay for the Neulasta. If insurance allows you to self-inject, the neupogen shots are very expensive if ordered from a pharmacy.
Also, just a heads up. The last time I got an Aranesp injection (actually a week AFTER) , I was handed one of those "warning" waivers about Aranesp and all the terrible things that could happen. Honestly it was a dire looking document. Made me almost think a transfusion would be better. I think there must have been some problems because the company is now requiring patients to sign the waiver.
Started to see a few hairs flying around today. I certainly hope they were errant strands (well, petite errant strands).
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I was given neupogen on day 8. Onco said it bumped up the wbc faster than the neulasta since I would be back on day 21 for the next round. I had 4 shots. One at the hospital then took three home. After my BC/BS paid, it was over $300 out-of-pocket. Found out today that my platlets were to low to have treatment thisThurs.They were at 91 and he wants them at 100, so I have to wait until next Wed. This will be my 4th treatment. They were at 88 last week, so I'm confused as to why I got treatment last week. Can they be low for one treatment and not another?
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Jeanne, I'm sure it was just windy and blowing those hairs around....
Susan, glad to have someone else to share her experiences with this drug. Hope it works great and is gentle.
Paula
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Hello I am taking Havalen also. I start my second round this Friday. My hair just started this morning to go. I was hopeful but for me once it starts to go it goes all the way. I made it almost to the end of January though. So far no side effects. The Nulasta shot was worse than the Havalen. Not tired and I am trying to start walking more for exercise - made it 30 minutes yesterday. Hope this keeps the beast at bay. 4th time going bald.
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Patti - you are definitely a trooper. My hair has started "thinning." I refuse to admit defeat yet. However, this will only be the third time I have lost my hair (if in fact I lose it all), and for me, that would be three times too many. I also started my second cycle (of Halaven) yesterday. Fortunately my WBC was on the high side of normal so I'm hoping I won't need a Neulastata injection next week. It is much worse than the side effects of Halaven! I am trying to walk at least 30 minutes a day - I live at the top of a hill, so returning home is a bitch! Puff, puff.
janetwit, I don't know anything about platelets and what the cut-off is for treatment. I did find the following through Google:
http://www.chemotherapy.com/side_effects/platelet/managing_platelet_count.html
Managing Low Platelet Count (Thrombocytopenia)
Platelets, also called thrombocytes (THROM-boh-sites), are fragments of bone marrow cells that are found in the circulating blood and are critical in stopping bleeding. Platelets, along with other blood components, rush to the site of an injury and work to form a blood clot, which is necessary to stop the bleeding. A low platelet count is referred to as thrombocytopenia. Thrombocytopenia is a common side effect of chemotherapy.1,2
Causes of a Low Platelet Count—Thrombocytopenia
Normally, there are billions of platelets in the blood; however, certainchemotherapy drugs can cause thrombocytopenia.2 Chemotherapy works by destroying cells that grow rapidly, such as cells in the bone marrow that generate platelets.3
A low platelet count typically occurs 6 to 10 days following administration of chemotherapy and continues for several days before the number of platelets in the blood increases to an adequate level. Infrequently, you may also experiencethrombocytopenia from other medications or as a consequence of your cancer.3
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Boy, you girls put me to shame. I did 10 minutes walking this morning. Will try to do some more after I go pick up my son... I walked around our block last weekend and was really winded.
Tomorrow is my last day at work (really, I've just been puttering around up here 12 hours a week for the last two weeks anyway).... I will miss the people, but not the work... well, most of it.
Found out one of my sisters is coming down for my scans. That'll be nice. And I'll be "retired" so we can do some things. I'd best get cleaning.
Jeanne, hope you skip the Neulasta... and hope everyone else keeps their counts up, up, up! Odd, isn't it, to really want to be poisoned?
Take care, girls,
Paula
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ok. i am joining your group next thursday! i will be going back and reading your posts and posting as well. thank you for your honesty! will really help me as i venture on a new treatment.
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Wahoo! I got my TMs back and they have dropped 100 points after the first 2 infusions of Halaven. The bad news is that my brain MRI from earlier this week shows a 4 mm lesion in the left frontal lobe. And my acoustic neuroma seems to be a little larger. Still waiting for the addendum of the report which compares the films from the MRI in early November. Shit. I'm sick of this roller coaster, but will take the good news about the TMs and try to ignore the rest for the weekend!!
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Jeanne, dang! Hold onto the good news until you get more information on the brain lesion.
Thinking good thoughts,
Paula
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Good news about your TMs. Hope you have a wonderful weekend with that good news. The other can wait until Monday. Why burst your bubble????
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Wow! I am so amazed with you all! Thanks for doing this! It will be a huge help to others that follow!
Just wanted to add: pot/mary jane/marijuana/weed/grass/reefer...... or as medical pros would put it, Cannabis. THAT is what you need, Paula. Honestly, it will increase your appetite 100 fold. (yep, I remember that from high school). It also helps with depression, anxiety and just plain ole "feelin bad". SE's of it are far less than just about any other drug listed on this thread. 'Cept the pickle juice, of course.
Good luck to you all! Peace out!
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Pot puts me to sleep.
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lisa,
The pot these days is so much stronger than the days of yore. I did use it a while back for stomach pain and it worked like a charm BUT the smoke made me cough and instead of increasing my appetite I zoned out big time. I think one has to be careful. I was afraid to eat it because I worried about how much I would intake and also how long it would be before I would get relief. By smoking I got almost immediate relief - with a sore throat. I do agree, it's much less harmful than any other treatment with no real problematic side effects like constipation, wooziness, risk of having to increase dose, etc. But one has to be careful. A friend of mine tried using it for nausea, but the "high" made her feel kind of freaky. If you take the THC as a pill, there's other stuff added to it and it made another friend of mine so sleepy he had to be awakened for meals.
So proceed with caution. I still would rather use pot than a pill!
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Oh, believe me, i've thought about the pot option. Brownies, anyone?
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I haven't had to use it. yet. But..with that said, I would have no problem whatsoever using it if or when I need it.
I used it... quite a bit during my "party" days.
Yep, I ate a TON. Laughed a lot. And then, became paranoid. I honestly believe however, that the last SE was d/t to the fact that I was using much too much at one time. Today, if needed, I would just hit it 3 times or so. What a relaxing feeling that would be. (I'm about to talk myself into wanting it) haha.While I was in nursing school, we had a book that listed ALL drugs. Medical use, as well as illegal recreational drugs. Pot had THE LEAST SE's of any of them... including drugs that were given to pregnant women!
And Jeanne... if you eat it, as in the brownies Paula will be making for us..
.....the trick is to only eat a small amount. And for how long it takes to have an effect: NOT LONG! haha.I think I'm gonna copy and paste some of this as a new thread. Don't wanta highjack this one. This one really needs to stay on topic!
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I think my cat is a seriously bad influence on me. I was really sleepy all day yesterday.
My allergies are also driving me nuts. My nose running like crazy (it's especially bad when you don't have any hair in your nose - thanks ixempra). So, today I tried a ritalin and we'll see if it does anything. Hubby's gonna go take me and my son on a few errands and I'm supposed to have dinner out with mom and sister this eve.
I seem to hit a run of fatigue/sleepiness two days after treatment. How about the rest of you? Didn't happen first round, but has happened since.
How's everyone's hair? My onc was very interested when I told him what others were experiencing, especially hairwise, on the board. He has yet to put anyone else on Halaven. I guess I really am his guinea pig. But so are you guys.
Hope you all have a good weekend. Supposed to be beautiful here, in time for really crappy weather to come the day I have to drive to treatment. Jeanne, we're here waiting for you to find out Monday that that MRI was not what it first appeared to be.
Paula
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The first day after treatment I was v-e-r-y slow and by afternoon was aching all over. Finnaly it dawned on me to take some ibuprofen and by dinnertime I was feeling much better. The second day after my first infusion of second cycle, I did okay. No real problems with fatigue (of course I did't do too much either). However, I'm embarrassed to say that I didn't wake up until 9:30 this a.m.
My onc's office has three gals on Halaven at one office and two at another site. Reports seem to be all over the place, but one consensus (but not mine) appears to be complaints of tumor pains about days 4-5. One gal has extensive bone mets, so she is pretty uncomfortable those days.
Thanks Paula for your good thoughts. (How's your hair doing?) It's like paradise here this weekend - so plan on soaking up some sun (Vitamin D officially!!), playing in a bridge tourney this afternoon, and seeing a good movie! Hope you all enjoy your weekend as well.
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Hi Everybody,
Just caught up with all your posts. We are all over the place, some feeling lousy, some feeling good, some with hair, some without. Can't wait to hear what the first set of scans show for all of us. I'll be praying for the whole lot of us.
Amgen, the company that makes Neulasta, sent me the results of some studies. I convinced my oncologist to give me 4mg instead of the usual 6mg. And it worked! I respond with gusto to neupogen and Neulasta. One week after the Neulasta my WBC was 23.1, but then I've never had more than one Neupogen shot. That takes my WBCs from 2.8 to 10.3 in one shot, one day.
I go for the first day of round 3 tomorrow, so we'll see what my WBCs are then.
Decadron???? You don't all get pre-medicated with decadron do you? I really don't want it because it keeps me up all night the first and sometimes the 2nd night. I don't see anything in the prescibing information that suggests pre-medication, although I'm hesitant to give up the Aloxi for nausea.
I felt great this week, maybe because of the decrease in Neulasta. I cleaned drawers and closets. I went back to working my whole 12 hour shifts in the ER. Feels great. Hope next week is as good.
Keep smiling, God has a plan.
Carol
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Cashew, that's great that you're feeling so great! 12-hour shifts, oh my! I'm actually starting LTD this week. A lady of leisure. My project for the week, cleaning out closets and such in my son's room.
I don't get decadron or aloxi, but maybe I should look into that aloxi. I always hated decadron for just those reasons. One some chemo I had (who knows which), I did take a real low dose of prednisone for five days after chemo and it really made me feel good those days.
TTYL, Paula
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Just managed to catch up with all your posts, Paula, and this sounds so promising! This drug is due to be given the go ahead here in Holland in about 4 months' time, so is another to add to my ever decreasing list! I think we'd try Navelbine first, though. Thanks for sharing your experiences; it's such useful information for all of us who are likely to give this a try!
Good luck with those scans in February! We are all rooting for you!
Katie
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Hi All,
Well, I had to wait almost 2 weeks between my first dose and second dose which I got on Friday due to low blood cell count. My oncologist didn't want to give me any Neulasta or Neupogen because he wanted me naturally to get my white blood count up so I could get chemo. It seems very different from a lot of you but he was one of the Dr's on the Havalen trial so I'm listening to him. Since the first dose wiped out my white blood cell count, he did lower my dose on Friday and the effects (basically extreme fatigue) have been much better.
As far as my hair, it all went bye-bye on last Wednesday (just after 1 treatment!). It just came out in clumps. Wasn't prepared for it to shed that fast so quickly went to the wig shop to get mine restyled!
Some naturapathic things that are supposidily good for white blood cells are Astragalus, Coriolus (a mushroom extract).
Anybody with neuropathy? I just started feeling some tingling and burning in my feet last night.
Regarding Pot, I just can't deal with the eating afterwards. I just want to gorge and then I get sick! Great for pains though.
Annie
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