Halaven - Day 1
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Dear Paula,
I am so sorry to hear that the results weren't what we all were hoping for. I just want to thank you for all of your help and wishing that you find something very soon that does its work. My prayers and love are with you.
Annie
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Hello Paula,
I'm so sorry and disapointed Halaven did not work for you. You have been an inspiration to all of us.! I was also surprised the decision to stop treatment came so early. My ONC said 6 full 21 day cycle treatments outlined in clinical trials approximately 120 days. He mentioned some drugs take longer to work than others. There were times he stopped treatment too soon but got the patients back on it. I guess it depends on each individuals status or severity. .........I always believe that there is a cure for eveything and the science for the cures comes in Gods own time, I also believe in miracles and the power of faith and prayer. It's been 21 years since diagnosed breast cancer and 16 of them were in remission. I am now 64. I been battling breast, lung, and sternum cancer since reoccurence in June 2006 stage 4.. I have the usual SEs everyone else has. I don't take Neulasta. All the bad comments about it I hope they don't require me to take it. They give me Leukine shots instead which is similar to Neuprogen to increase WBC when needed. My appetites okay. ,,,,,,,,,,,,,,I had my very first Halaven treatment this morning. I took about 30 minutes. So far feel just a little Nausea . Thank you Paula, you are in my prayers. You are our team leader!. LOL Nancy
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Rats, Paula...I am so sorry to hear that news...I just feel like there is a magic bullet out there for you someplace - I just know it - you will forever been known as our very first Halevanite - my hopes, thoughts and prayers are with you!
Hugs a Bunches - LowRider
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Hi, girls, I know this is the HALAVEN thread, but any of you already do taxotere/carbo that could tell me about it? I've done Taxotere many moons ago....
I hope all of your get great scans when that time comes up. Halaven is a ray of hope, and I hope it delivers!
Paula
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Hey PJB - I'm not a halavenite, but I did 6 rounds of taxotere\carboplatin 2+ years ago, so PM me anytime you have questions :> I know it seems everyone has a different reaction to this combo so there is no set script. Some have many SE and others hardly any. Lots of fluids are helpful in the days after an infusion. I took lots of anti nausea meds, but I tend to be nauseated so you may not have that problem. I dreaded the neulasta shot more than the TC, but clartin\aleve & vicoden helped out.
I know this combo has kicked some serious cancer butt, so I am hoping this is a great mix for you!!!
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Hi Paula and Everyone
I'm Steve, Nancy's husband. About a month ago cancer researchers annouced if everything goes well by the end of this year a new simple blood test will be in doctors offices that screens for cancer and specifically identifies which chemo drug would be best to fight and eliminate the cancer based on an idividuals body make up chemistry. Apparently no matter where the cancer is. It will be in the blood, It would also eliminate the need for mamograms, colonostrophys and some other screening techniqes. This was hailed as a huge advancement in cancer research and trials were set up at several centers in the country. This eliminates valuable time going from one chemo drug to another searching for the best chemo drug. I think this is worth investigating. I'll try to find the announced report It should be on the internet under new blood test for cancer screening. Nancy's ONC was not aware of it and basically said, well if it is in trials it should take years. Why did the report say if all goes right and no problems arise it shoud be available at the end of this year? ........... Nancy's progress after first treatment slight stomach ache in the evening, slight nausea but managed to eat some mild food, feeling tired, but perked up and and looked like her old self having fun watching Survivors on T.V. Today no stomach ache, feeling tired laying down. Nancy's husband. Steve
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Hey, Steve,
Glad Nancy is perking up and enjoying some good entertainment! I've gotten hooked on Lost reruns in the last month or so. I hope the fatigue passes quickly. Many days, I found if I laid down for an hour or two, even if I didn't sleep, I felt better after. I hope she gets a boost.
That blood test sounds wonderful. Wouldn't it be great if we didn't have to just guess?
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Yes Steve.
Please let us know more about this amazing blood test.
Thanks,Kim
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HI Paula and Kim
Type in " New blood test to detect cancer" on the internet. We first got wind of it front page newspaper story back in January.. You'll see several other postings on the internet reflecting the story. Johnson and Johnson with several major cancer medical centers are involve in trials. They invented the testing device in 2007. They are excited about it. Take a sample and in 24 hours apply the appropriate chemo and see if the cancer cells are killed in a testing container. Let me know if you find it on the internet. .............. Yes Paula, Nancy is hooked on shows like Apprentice, Dancintg With the Stars, Wipeout, Americas Got Talent. Survivors. She never got into the show 'Lost" probably cause it was on the same time of ofher favorite shows. The shows helps her not think about the SEs and puts a smile on her face . Thank you! Nancy's hubby Steve
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Good news is Johnson and Johnson is involved so there is real money being spent to develop this test. Bad news is that I read 5 years. But it still makes me happy if you could get the test with your yearly physical. I had yearly physicals but went 9 years without a mammogram. Early detection is everything but a vaccine for the rest of us would be good also.
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Hello Marybell;
Let's hope that it will be sooner than five years. I read it may be a reality by the end of this year. Just a few minutes ago I read an internet post that it could be 3 to 5 years. This new test should save tons of money for families and our government. It would make sense for our government to expend all resources necessary to make the blood test a reality as a priority. Our children and future generations will also benefit and not have to go through what we go through now fighting cancer. Thank you. Nancy's hubby Steve
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HI Everybody,
Good to catch up with you. I had CAT scans and bone scans. The CAT scans included my neck and went just high enough to catch a tumor in my brain. MRI showed several more. I had NO symptoms. Thank You God. There may be a few more spots developed in my liver, but the largest tumor in my liver shrank significantly, the ones in my lungs looked better, and the ones in my lower spine were gone. The ones in my neck remain unchanged. So at the moment I'm off the Halaven and taking radiation to my brain.
Then my research-doing, speech-giving, texbook-writing oncologist in Indy says he is going to discuss me with some of his colleagues around the nation, discuss it with my local oncologist and me make a plan. Personally, I hope the plan includes continuing the Halven because it was obviously working on some of the cancer.
So at the moment I'm not a Halavenite
, but I'm hoping to be back. Carol
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Just realized I should explain something from that last post. Most drugs including chemo do not cross the blood-brain barrier well. So it is generally more effective to treat brain mets with radiation.
I will get a total of 14 radiation treatments, already had the first 5, and then go on from there. I just hope that while the chemo cat is away the mets mice don't play too much.
God has indeed blessed me so far, why would I expect anything less. I've had breast cancer off and on for 17 years. There's several tumors in my brain, several in my liver, in my spine, and all throughout my lungs and I can still work full time in the ER. I must be the luckiest woman alive. Either that or I'm too stupid to sit still. Love to you all, You are in my prayers,
Carol
Carol
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HI Cashew!
Thank you for the update and some positive information and very informative info on brain radiation treatment. I"m amazed that you are working full time even with all the cancer you are dealing with and that you been in and out of cancer treatment for 17 years. You are truly blessed. I always believe there is divine intervention to bless you in trials especially when dispite your difficulties and suffering you still go out and help others. Your expertise and experience I'm sure is valuable in the ER . .............Update on Nancy she is doing fine third day after first treatment. Tired and fatigued in the mornings but perks up in after noons and evening. Had spighetti dinner with visitng daughter and grandkids even had small piece of chocolate cream pie for dessert. She deals with fatigue and neuropathy, mild head ache this morning that went away. Spends a some time on the phone with concerned family members and friends that call. . She has a hard time seeing on the computer due to vision problems mild catarac in both eyes . They can't do surgery till cancer status improves. Thank You, I'm Steve Nancy's hubby
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Carol, boo on the brain scan, good on mostly good results on the rest. I hope the radiation is as gentle as can be and, of course, effective. Do they zap the whole brain? What are the affects so far? How the heck do you keep working full-time? You are superwoman.
You know, your news makes me want to ask for a brain MRI just in case. They found a positive node in my neck this week (doc was looking for something other than, say, my liver to rebiopsy for HER2 and ER/PR and dammit he found something.
Steve, sounds like things are getting better for Nancy, and that's wonderful.
Take care you guys
Paula
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Hello Everyone!
Yesterday over a hundred doctors, nurses , and physical therapists in nine cities were arrested for illegally billing Medicare more than 225 million dollars in false claims. The FBI suspects Medicare fraud is betweent 60 to 90 billion dollars a year . I heard some time ago even patients are involved getting pay offs being in cahoots with doctors submitting false treatment claims......... It looks like we have to battle the disease and the crooks at the same time. Now Presidant Obama wants to cut the Medicare budget by 450 billion dollars. That's our money that pays for cancer treatment and other medical bills. Can you folks see the handwriting on the wall? Higher copays fewer authorized treatments. We can't let that happen. They have to do more to prevent fraud. They watched these crooks since 2009 before arresting them yesterday. It don't sound like good police work.. Let them steal the money and then go after them after it is already spent. They may go back to treatment only at major hospitals that are fixed as many of these crooked facilities disappear after getting paid on false claims. Stiffer penalties, loss of license to practice and jail time for sure. ..................Nancy treatment update second day since first treatment. She's acting a lot better slight headache use ice pack to relieve it. She is not as fatigued and acts more alert. Takes percoset for neuropathy relief. Her appetite is good. She ate a six inch home made philly cheese steak sandwich that I made with some sweet potato fries for dinner. ......... Nancy's hubby Steve
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Hi checking in here. I started round 3 yesterday. I am six weeks into this treatment. I have about 60% hair loss. No wig yet but it's not pretty when the wind blows. I have scans on Monday to check my liver. WBC are good and I get a Neulasta shot the day after my 2nd dose for each cycle. Platelets have dropped from 317 the first week in January to 121 on Friday. 2/3rds of a drop. Kind of freaks me out. I had a really bad cold last week and I am sure that didn't help. Fingers crossed for good news on Monday.
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Hi Patti - just sending lots of good thoughts for your scans on Monday. Am hoping the Halaven is killing those cancer cells. Wondering -- do you have any problems with the Neulasta injection? They really wipe me out for a few days.
Carol - sorry to hear about the brain mets - but it's a good thing they were picked up so they can be zapped before they cause any damage. Will you be having WBR?? I wish you all the best.
Steve - glad to hear that Nancy is feeling better. I have found this chemo to be easier than most.
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Jeanne - About 12 hours after the shot I feel a little off - 24 hours after the shot I feel like I have the flu. The aches and pains last 2 -3 days and I have little energy. The headaches last the longest; up to three to four days after the shot. It didn'tt help that two days after the last shot I did get sick. Sinuses and stuff. I was sleeping about 14 hours a day. If I was awake I was on the couch. My next shot is next Sat.
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Hi,
I'm new to this thread, am to start with Halaven next week and wanted to see what you wonderful ladies have to say about the side effects. I remember having the Neupogen injections, my husband would give them to me - I was too chicken to do it myself.
But my main question is that I thought Halaven was for HER2+ patients.
Joann
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Patti - meant to add that the last time I had Neulasta (2 weeks ago) the NP halved the dose and it did make a difference. Instead of being out of it for 2 days with slight fever and flu-achy symptoms, it only lasted a day. I was still tired the 3rd day, but no fever, no flu-y symptoms. And my WBC was in normal range this past week - enough for me to get the Halaven. Maybe they could cut your dose too????
Joann - Halaven is for anyone. Are you also taking Herceptin? Welcome to our Halavenite Club. Best of luck to you. For most of us, it's been a rather easy chemo to take.
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Cool. I ask the onc on Fri if she'll halve my dose on Sat. thanks!
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Hello Halavenites, and welcome Joann. This past weekend - it was in my off week of cycle 1 - I was completely wiped out for two days (Friday and Saturday). It also felt like I had nails stuck on my throat and nose - food would not settle (no appetite plus vomit), and lost my voice. In one week, I have lost 10 lbs - and I did not know that was possible (I have always been slim but now starting to look sickly). The exhaustion felt like I was anemic, not enough air, could barely get off bed. My RBC was normal on Monday - but possible I had a sudden drop? Sunday I felt better and today I'm back to normal. Anybody else experienced such things with Halaven?
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Hello,
I had my second does of cycle 3 on Wed Feb 16 and this is my off week. I always lose my voice on the day after my infusion (i.e. on Thursday) and it usually comes back by Friday. I get bad mouth sores which resolve themselves in a few days. I have been exhausted too and feel like I cannot breathe properly (considering I have lung mets, it scares the crap out of me) but that too passes in a few days.
So, hope4us I am right there with you on these side effects. Really hoping that Halaven works for all of us.....
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I, too, have lung mets and really hoping this is a side effect and not the mets getting worse ... thanks for the feedback, HopeToMakeIt, and I too really hope it works for us.
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hope4us: I will ship you some pounds anytime you need them, seems like none of the chemos have affected my appetite but I think that helps me stay stronger.
Mets in liver to the point that we cannot see any clean liver, mets in more lymph nodes and one spot in my bone but the liver is the worry point. Hope to kick this before it spreads more.
Hope to start Halaven this Thursday and knock the heck out of this monster. It does me good to get mad and ready to fight back. I have great support, my kids came over yesterday and stayed all day to keep me entertained, they are great!
Will check in again tomorrow! Thanks for being here.
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jneumann, welcome to the Halaven club and good luck tomorrow - hope Halaven makes your liver happy. Most seem to have easy time with Halaven - all are having easy time at my center, and I hope you do too. For some reason, it has not been so easy on me - and I just want to know if it is working - then I can easily tolerate the issues - will have my scan in 2 weeks after finishing Cycle 2. I look like the skeleton in my high school biology lab and feel like crap - just can't eat, thought of food makes me sick, which is adding to the fatigue. Living on Ensure right now and I have to close my nose to drink that. Aggh!
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GOOD NEWS fellow Halavenites!! After just my first cycle (3 doses) my tumor marker CA 15-3 which seems to be very reliable on whats going on in my body dropped from 805 (yes, very high) to 599. The best news is that I didn't think it was working because I keep getting ascities (cancer in my peritineum (sp?)), and it should be going away if the cancer is going down but my oncologist said that we just have to keep with it and be patient! Which is not one of my virtues! So wanted to share some encouraging news for you all.
Annie
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Yes, good news, thanks for sharing
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Hi, everyone. Great news Annie! I will find out what my markers are doing after one cycle in a few days. Paula, I am so sorry for the bad news but this is just a bump in the road. The next combo will kick cancer butt. Carol, sorry about the brain met but it sounds like it was discovered early and that the Halavan was working well. Patti, wishing good luck with the scans. So far with me, I am losing hair pretty quickly. Drats!!! I have about 1 1/2 inches but it is fading fast. I felt great until about the 3rd day after the med and then I felt puny, weak, tired and slight nauseous (nothing to take meds for thankfully) for about 2 - 3 days. I have been taking Claritin so I didn't have any real bone pain after Neulasta. My hemoglobin is low so that is also making me more tired. On the week off I felt wonderful and even started exercising again. Hope4us, I also got a sore throat and also a headache. Time will tell with this cycle how I will feel. I will keep you posted!
Susan J.
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