Halaven - Day 1
Comments
-
Hi All,
Just wanted to let you know that I didn't take any anti-nausea IV when given the Halaven and then didn't have any problems with constipation at all!! Halaven did not make me feel nauseaus. I also think that it was the Neulasta that made the terrible joint, bone pains and I did have cramping also in my hands but I think that may have been from the Halaven.
Annie
0 -
The typical dosage is on the 1st and 8th day of a three week cycle with you having the third week off. It's a drug that they give by pushing it into the saline line over a period of 5 minutes. My Onc gives 2 premeds with it (one pushed and one drip). I'm in the chair for an hour of so.
Some people on the site have gotten it without premeds and some have had their timing changed due to SE's. It's likely that they will start you on the dosage I described unless you have other problems with platelets, etc.
0 -
I got my lst treatment today....they gave me aloxi and decadron ( I think that was it, some steroid.10 mg maybe?) .....the actual treament would have only taken about 45 mins including the premeds and saline drip, BUT they always make you sit there forever. Fortunately I know a lot of women there from always going on Wed. so we sit and visit. My white count was 6.4 today when they ran the blood work. I don't get a shot of neulasta until next week and then on the 3rd week when it is a non chemo week, it will be time for my Xgeva for my bones again. The best news is that I met a woman in the treatment room who has been on halaven since Jan....she said she has tolerated it very well, her hair is actually growing back even though she is still getting treatment and the TUMORS IN HER LIVER DID NOT SHOW UP at all on her last scan. The onco was going to reduce her dosage since she has really bad neuropathy....can't grasp things and drops things a lot, and the neuropathy in her feet has gone all the way up her leg. She has been on several chemos before and said this is an easier one, at least for her. I know many of you told me this and I appreciate all your input and feedback, but it really helps to actually physically see someone who is on it. I kept asking her things....she said her nails are very brittle and she has a difficult time typing....now that could really cramp my style....if I am unable to clean teeth, I would at least hope to be able to type on the boards in my free time. But I have to keep in mind, we are all so different. I will keep you posted and will be coming here to see how the rest of you are doing. Got a RX for zofran filled, but don't know if I will need it or not. I am so glad this thread is here.
0 -
Marybe, that is truly good to hear about how well the Halaven has worked for your infusion-mate. I hope you don't get the neuropathy. We can't have you not typing here on the boards!
Paula
0 -
I know it is too soon to be able to tell if I am going to get SEs since I just had my lst treatment yesterday, but so far so good. I did get some finger cramps last night and woke up because of a shooting tingly like feeling going up the back of my leg from my foot, but I am attributing it to the fact I have not been drinking much water and I know I should. The onco had me get the Zoffran Rx filled, but I don't feel the least bit of nausea. So we shall see. Slept well last night which surprised me since I got the steroids in the premed mix.
0 -
Mary, I got zero premeds with Halaven. I had a little of one of those teeny bags of saline, I guess just to give them something else to charge me for while I waited for the pharmacy to get the drug ready.
It's interesting to see so many people are getting them (I just had a script for nausea stuff after if I needed it). Maybe that's why I had so few SE. Or maybe they've learned some things about the drug since they started giving it!
0 -
Hello All!
Nancy's CA15 markers went from 128 to 127. This count was after completing three complete series of halaven. She completed her fourth complete series this past wednesday. We were surprised that the count did not go down more. Her ONC say don't get to caught up on markers. He feels Nancy is stablized and will do a CT scan 12th of May. The CT will give a better picture of her condition. I like her ONC and trust his judgement. At first Nancy and my daughters said he wasnt warm and fuzzy enough. He's more so quiet, and business like. They like him now. We been with him since August 2006 . . .........Thank you all for sharing your experience, and your prayers for Nancy.. There was a time I was afraid to pray cause the more I prayed the worse Nancy got. I kept the faith and continued praying and inspiration came to me out of the blue. "Your prayers will be answered when you help answer the prayers of others." There is so much suffering in the world today. People losing everything, even their love ones through natural disasters. The poor, the hungry, the homeless, the sick, needy, depressed and oppresed, the fatherless, the widow the lonely. Do what you can whether you have cancer or happen to be the family member of the person who has cancer. It may be the key to healing . I believe the Lord will keep us here longer where we can do much good. Nancy's first occurence of breast cancer started at in 1989, over 21 years ago....... Thanks again, Nancy and Steve
0 -
Does anyone know if Halaven causes aches and pains?....muscle I am thinking because it doesn't really feel like bone. I woke up and am just aching all over the place although will admit I feel better now that I am up, but my fingers, my legs, my shoulders, even my artificial knee were aching. It is good this is happening on a weekend as I have enough left over drugs to experiment and see if something works...am going to start with the muscle relaxant, but know I cannot take that and work because it puts me to sleep, also I have lots of pain pills and think I will try tylenol before I dig around and find those. I was thinking maybe I am dehydrated since I had a margarita and mutiple cups of coffee at the wedding reception I was at.....but I also drank more water than I have for a long time. I know water is important, but unless someone is filling and refilling my glass I just don't drink it. Tonight I did so that is a good thing. But what is with this overall achiness...this is not even a listed SE and up until tonight (morning really I guess) I have been feeling absolutely fine and the lst treatment was on Wed. I am going to take a muscle relaxant and go back to bed now.
0 -
This ought to be good since I am a Gamecock girl but seem to have other things in common also. I am also on Halaven with extensive bone mets. I have finished three complete rounds. We will be doing another scan after this round.to see what else is going on. I am so thankful for this page because I have so many questions. I am the first patient that my Dr has prescribed this to so we are learning SE's together. Alot talk about tumor markers but we tract CTC's or CCC's some call it. (Circulating Cancer Cells) Does anyone else use these blood tests.. Ideal is to be below 5 but mine are 227. I have had a little thinning of the hair, FATQUE, but the main problem is I feel like my throat is closing ot there is something in there. I am on my off week and do not want to go to Charleston to be checked and I know if I call my Dr that is what will happen. But I am having scab like clots and small nosebleeds.like there is an obstruction in my nose also. Is this normal for anyone else? Also is anyone else usinf the CTC blood tests. It will be such a relief to have someone to talk to because I have a hard time getting my thoughts across when describing my problems...
0 -
Marybe, I was just whining to my husband about my aches and pains this cycle. I have had some sharp shooting pains all over, but mine feels like bone pain and could also be attributed to the Neulasta shot I got last week. For me, I still get aches and pains with just the Halavan. It's nothing horrible but I feel like a rusty tin can sometimes
Yaiyaicoty, I also get mild nosebleeds and often wake up needing to blow clots (yuck!) out of my nose in the morning. I get a sore throat for a few days after my infusion as well. My onc uses the CA 27-29 marker to monitor me. It was 1030 (!) when I started Halavan and is now 230 after 4 full cycles. Hang in there with me, ladies!Susan
0 -
Clemson:
I am encouraged by your success. The nose bleed thing scares me a little - I'm hoping you and yaiyaicoty have good platelet levels. I finished my 2nd round today and got a lecture from the Onc Nurse to call with any bleeding. I also live in an area with minimal humidity and I use a large humidifier in the bedroom - I think it helps.
yaiyaicoty:
A trade off might be to call the chemo center tomorrow and talk to a nurse. Also, every Oncology Center that I've gone to also has rotating oncologists. If you call (not too late at night but maybe 7 or 8 pm, you could get good advise without a visit. My current Onc takes emails.
Before, I list my SE's I want to say that I've only done the two cycles and my dosage was reduced because of my platelets so my SE's could be milder. I'm also getting premeds which explains why I'm hyper on chemo day emailing at 10pm. My worst SE is constipation - very bad but I try to stay ahead of it. The day after chemo I have very bad upper GI distress and have to double up on meds for this on the day after. I then have a couple of good days (with exception of constipation) then towards the end of the week I have a couple of days (midday) where it feels like my head is going to drop in my lap. I have a cup of tea and just try to push through it. Six to seven days out I've had bone pain in lower back, ribs, hips, and neck but I mainly ignore this an just rub these areas and apply heat. I don't get the Neulasta shots so my bone pain is from the chemo. I don't consider the SE's bad with this chemo but I'm on the reduced dosage.
My onc uses the CA27-29 so I'm not familiar with the one you are doing.
0 -
NurseAnn, Two cycles equal 6 weeks, right? What dosage are you getting? I get my 2nd dose tomorrow....so far so good. If there is one thing I am used to it is constipation...both Navelbine and Gemzar caused it for me. the latter the worse of the two. Sometimes laxatives would work, sometimes not. I felt better than I have for a long time the three weeks I was off treatments, going to the bathroom, sleeping without any problem, aches all gone. However I will say I have not really had any SEs at all from my lst halaven last Wed, but I know it is too soon to tell....get #2 tomorrow afternoon and then the following week am off so will only be getting my Xgeva shot then. Do they automatically give me neulasta or wait to see if I need it? Did your white count stay where it should be?
Yaiy....I think that throat feeling may be neuropathy....a woman in the treatment room was having that sensation and told me that's what it was from....I was thinking it only effected extremeties, but guess it can go anywhere.
Neither one of you with the nose bleeds and clots are doing Avastin are you?....just Halaven. I am sure there are many SEs that don't pertain to all that they don't even tell us about. Very impressive about the tumor markers, Clemson. I sure do hope mine go down down down.....2,709 is a bit too high for my liking.,,,that is what we are calling my starting point .
0 -
Marybe:
Yes, I've had 6 weeks of treatment - 2 cycles. As others have said, sometimes it's hard to know whether or not its the premeds or the chemo. I will talk with the Onc about increasing the dosage the next round - she is currently giving me a reduced dosage of 1.82 mg - I think the normal dose is somewhere around 2.5. Maybe you will not have SE's - mine have been pretty constant from the start.
One thing I forgot to add to my SE list is foot and leg muscle issues. They tend to get real tight and I exercise them several times a day. I point my toes to my shin and stretch the back of the calf - trying to keep the feet and calves limber.
Good luck.
0 -
Marybe, I have taken Abraxine and Avastin and that is where the nausea and bleeds and clots started. Today I am on my week off after 3 rounds and I woke up with 5 or 6 fever blisters on my tongue and lips. So painful..and naseau is more frequent at times than with the many other treatments with the exception of that red devil...One of my main questions is, "has anyone ever used the CTC or CCC blood test?" It is one that has to sent off but it filters the blood and extracts the actual cancer cells so you know how many cancer cells you have in 7.5 mm of blood. It needs to be under 5. After 5 cells it is positve and you can determine your cancer in the blood that may be spreading..or if the chemo is working or needs to be changed...Mine increased almost 400% last month and that is why I was put on Halavene. My oncologist was going to put me on docile but after the big jump decided on Halavene. I am his first patient on it. Thats why I am relying on you guys to help with SE"s. I have found that when I first started I had no SEs but the more I take the more side effects are showing up. Especially the fatique.Good Luck and Thanks to all of you
0 -
Hello everyone! I am new to this site unfortunately not new to breast cancer. I was originally diagnosed with Stage IIIa in 07/2008. Unfortunately, I found out last July that the cancer had mestacized to the liver and bones. I immediately started Avastin/Xeloda/Zomeda and had great results heading into remission until my latest CT/PET Scan last week. Unfortunately, the disease has progressed again and I started Eribulin this past Monday. I was very glad to find this board and I am nervous as we all are. The first evening I was a little nauseas but since then
I have been very sleepy. I finally stepped out of it today but I woke up with sore shoulders. It made me really nervous because one of my new spots is in my femoral head (shoulder arm bone). Then I realized it was on both sides and seems to be more in the muscle than the bone. It feels like I just got a bad flu shot in my arm. I noticed another lady had the same side effect. I had a glass of wine last night at dinner and I am wondering if dehydration as she stated before is the culprit. I am praying that we can all find some success with this therapy. My oncologist is optimistic but as we all know there are no guarantees. I am only 35 and I have beautiful 5 year old girl to fight for. It has been a mentally challenging week. I went in under the pretense that if everything came back good then I was going to get a break from therapy. Instead I am at the starting line again. I am praying for a cure and enough medicine to keep us going until then.0 -
BMAGIN, So sorry you are joining us, you are so young. I also have it in my humeral heads....both of them....actually I have it all over the place in my bones, but none below the hip. Sacrum, sternum, ribs, spine, all over the place. But it is the liver that has them worried.
Yaiy, I have one called a cell search done and know it is one of those....it was 1 one time, but I actually think they screwed up on reading that and it was zero because the next time they told me 0 and I said oh, it went down and the PA asked what I meant and I said the nurse told me it was one last time and she showed me the test and said no, it was zero, she was looking at the wrong thing. Now that gives me a lot of confidence in getting my results over the phone. But every time its been zero and I have had it done about 10 times total over the last 5 years....it's a circulating cell search, I think. The CA27/29, the one that is sky high, 2.709, I have had done every few months ever since I was diagnosed Stage lV.
Today I want for my neulasta shot and took claratin as someone advised me to do to lessen the SEs. So far nothing. Also I have now had two doses of halaven as of yesterday and no SEs with it either....I am sure I would have gotten nausea by now if I was going to. And actually I am much less constipated that I was on navelbine or gemzar. They told me my hair will thin out, not fall out like it did before, but like I said nothing, absolutely nothing so far. Oh, my white count did drop in half , but that is why I am getting the neulasta shot. Next week, I am having no treatment since it is my week off, but I will be having blood work and also getting my Xgeva shot for my bones. Maybe this drug will be an easy one for me....I just hope it works.
More than one person told me to expect bone pain with the neulasta, but that it won't start for a few days.....sure do hope I dodge that SE.
0 -
Maybe,
I am in the places as you in the bone. I also just had another liver spot appear and questionable area in the adrenal glands. I had three spots in the liver in July and they all went NED on my last treatment until this PET. I am praying that the liver will go NED again and stay that way. I did Neulasta on my first chemo round in 2008. It gave me really bad restless leg and knocked me out of it a bit. They reduced the dosage in half and I did fine from that point on. Good luck and I hope you continue to have a lack of SEs.0 -
Hello Everyone. I am Susan , aka TJ's Gammy. I am new to this site but cancer and I are long enemies. I developed breast cancer in 2000.I did adriamicin and cytoxin, radiation and tamoxifen for 5 years. The cancer came back in 2006 in my bones, about six months after my beloved grandson TJ was born. The cancer is everywhere in my bones . Spine, pelvis, ribs, head, shoulders, breast bone, collarbone, hips. We discovered it because the pain got to be so bad that I couldn.t even lift my beautiful little 5 lb bundle of love. Since then I have had radiation (which was a miracle for the pain) and too many chemo drugs to list or remember. I had my first halaven today.so far no side effects. I've had the neulasta before with no sides from it. I hope this time will be the same. I'm also on a 50mg fentanyl patch and zometa once a month. I have great support from my husband and sister. They won't let me drive or go to any DR appts by myself. My sissy is so easy. She carries and lifts everything. I love her.
I have also had almost 5 years of the most joyful and lovefilled time with my dearest TJ. When he comes running into my house, yelling GAM..MY I HE..AH I completely forget my pain and am filled with so much love and joy for that little guy.We have developed quite a bond..I will stay in touch about whatever side effects develope. Thank you all so much for your comments. They have given me hope and a good idea of what to expect. Susan0 -
Susan, Praying this one works for you. I have only been on it a little over a week and have had two treatments and think I have no SEs....have terrible heartburn today that kept me awake most of the night that my nexium did not take care of,but I honestly do not know if it is related to anything or not.
0 -
Dear Marybe,
Thank you for your response . Guess I was too optimistic about the sides. I woke with aheadache from my ear to half way down my arm. One 20mg dialaudid helped greatly. It"s a waiting game for us I guess. I am sorry about your heartburn. Not only does it hurt but it keeps you awake at night. Ask your Oncology Nurse about increasing your nexium. So far one a day is good for me but some of my chemo buddies take it three times a day.. Thank you for your prayers and know mine are comming right back to you and continued success with the sides. Susan
0 -
I stilll think I am doing OK with the halaven, but that neulasta shot is a killer....already wrote about the heartburn and don't know if that is realated, but yesterday afternoon, OMG, I was one big fat ache. It was like instant arthritis and felt like a bad case of the flu coming on. I should have taken claritin BEFORE the injection, but didn't find out in time.....next time, since I think I get this every two weeks, believe me, I will be prepared. Have a headache and I never get headaches....every part of my body hurt, but it is getting better today.
0 -
Well the neulasta did what it was supposed to do....today my white count was 39.9....last week it was 3.4, 3.2?, I foget what, but know it was half of the week before when it was in the 6s. Nurse said next time they may half it since I responded so well to it. Hair just started coming out tonight....not clumps, but is shedding all over the keyboard. This is my week off so I only had an Xgeva shot today and those do not bother me.
0 -
Marybe, the Claritin has really helped me with the Neulasta. I still get a mild head ache and aches in general but it's tolerable. I also get heartburn and finally broke down and started taking OTC Prilosec. I haven't had any problems lately. Oh...my hair has stopped falling out and is starting to grow again so don't give up on yours yet!
Susan0 -
Oh, I am not giving up just because of hair. I was reading about those penguin cold caps you can use to avoid hair loss....no way would I spent three hours after treatment doing something like that....plus I hate cold. I am just praying this one is the chemo that gets me back to stable....if there is one. I take nexium and normally that works very well.
0 -
Hi, ladies. So...after cycle 5, my tumor markers went down 20 more points. I am really happy for the decrease, but it is much smaller than the decreases I have been getting. I hope this doesn't mean the drug is beginning to fail me. I hope everyone else is doing well!
Susan0 -
Yea, Susan! Hope they keep dropping and the lesions shrink.... Paula
0 -
Bump for EllsJen
0 -
hey, i have been on halaven for months. made small tumors in liver disappear and is keeping the big one in liver stable. i was put in the hospital a couple of weeks ago due to infection from chemo. they are reducing my halaven by 20% whenever i can get it again. blood platelets have been down so couldn't get it last week. try again tuesday. is anyone on a reduced rate? and can you tell a big difference from full to reduced in your side effects? as you can imagine, i am a little nervous to get chemo again. 7 days in hospital was horrible. but i got to keep fighting! thanks!
0 -
Susan, Maybe your body is just getting used to the drug and not reacting as much, but at least they are going inthe right direction, down! I had treatment #3 yesterday, which I guess was the start of cycle 2. I believe he said we would do a CA27/29 after two cycles. My white count yesterday was 5.4....a big drop from the 39 the neulasta shot took it to....there were several things that are low...hemoglobin, hematacrit and I forget what else, all having to do with red blood cells. No one went over this with me so I am not sure what this means. Hair is still coming out, but really to look at me you can't tell. Does this drug by any chance cause rosacia (sp)?....my one cheek got a big pink circle on it today like a bad rouge application and then by the end of the day both cheeks were like that.
0 -
I've started Havalen this month. I'm praying that this will work. Started out Stage II when first diagnosed in April 2006 and so far its been easier for me to tolerate than the Adriamycin.
0
