Halaven - Day 1
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Thanks Nurse, I can deal with constipation....don't like to but can. I was like clockwork and never gave a thought to irregularity until Navelbine and then came Gamzar. I take SennaS and sometime miralax. Feel like I have joined the leagues of the old talking about my bowel movements the way my grandmother always did and Father does now. Thanks for your reply. I will be talking to onco again today....I would like to give Xeloda a shot before doing Halaven, but will do what he wants, I guess.....am trying to just talk to people who have done it since I get more from them that from reading a printout. If the fatigue hits a few days later that would be good since I get it on Wed. and really would like to keep working. WIth the abraxane is was two days later also and I would sleep from Friday afternoon on and be OK on Monday. Thanks again.
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Hi Marybe,
Welcome to the Halaven club... I just finished my 6th cycle of Halaven yesterday. The SEs are manageable and I got some regression on it on my last scans, so hoping to continue it longer.
About my side effects,
1. Complete hair loss - lost all of it after day 8 of cycle 1, the onc said that some ppl lose all, some lose none and some have thinning... so go figure...
2. Neuropathy - Came on very suddenly after cycle 3, but has remained the same in intensity since I have started accupunctue treatments. It is not bothering me too much and am able to function normally.
3. Fatigue - I get treatments on Wed, and fatigue kicks in Fri morning and get worse through the day, by the time I am ready to go home from work in the evening, it is usually very bad and I just want to sleep. I go to bed very early Fri night and sleep for a good 12 hours, Sat morning it starts to get better and am usually fine by Sunday night.
4. Mouth sores and bad taste in mouth - Lasts for a few days, it is manageable.
Take care and let us know what you decide with your onc.
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Marybe, I have completed 4 cycles of Halavan so far and am having great results. I haven't had too much nausea. For me, it feels more like being weak and shaky...almost like low blood sugar. I notice it the most 2-3 days after my second treatment in the cycle. I have to eat something when I start to feel puny. I also have a dulled sense of taste during that time. I haven't had a problem with constipation, but I take stool softeners to help with that. I do get tired, usually in the afternoon, and have to take naps. My eyes tear quite a bit, but it only seems to last a few days after treatment. I do get a mild sore throat which also only lasts for a few days. I have developed neuropathy which I never got with Taxol or Abraxane. My onc actually said it was a common side effect along with neutropenia, which I have also. I have to get Neulasta after my second treatment. I am taking Neurotin for the neuropathy. I have had no problems with my nails...yet
. Overall, I feel really good most of the time. Best of luck!
Nancy and Steve, thanks so much for the information.
Susan0 -
Also, I started to lose some of the hair I had begun to grow while on Abraxane. The hair loss has now stopped and I have most of what I started with.
Susan0 -
Marybe, you made me laugh with your line about talking about "movements". That's exactly how I feel, various people I know sitting around talking about it. Who'd have thought?
I was on Halaven for four rounds and really had few side effects. A little fatigue, but nothing like I've had with other chemos (especially the dreaded Ixempra). My hair actually was growing back with Halaven. It was, for me, the easiest of the whole list of chemos I've done, which is pretty much all of them. We're all so different! I loved that it took almost no time to get. Alas, it also didn't work for me even tho it initially really dropped TMs (then they went back up).
If you really want to try Xeloda first, I'd press your doctor as to why he/she wants to try Halaven first. It is YOUR body. Is there a reason he doesn't think Xeloda is a good pick?
Best to you all,
Paula
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He says eventually we will be doing Xeloda just like some of the other chemos that are out there....his way of saying this is going to be an ongoing saga. But for now it is going to be Halaven and I start on May 4....waiting til then cuz I wanted to get my cataract surgery out of the way....also want to be sure I have hair for a wedding I am going to on May 7,...providing I am not experiencing fatique yet. He tells me it takes about 10 days for the white count to drop down. He said he has had some excellent results with it on patients.
Thank you all so much for sharing your SEs with me....I was listing all this stuff today, telling the onco and he was just looking at me like I had two heads and said I know you go to those message boards a lot, but that does not mean those SEs are going to happen to you and I said I know that, but they could and I like to be prepared. He said neuropathy can happen with any chemo. He does think I should look into disability again (went to SS office two years ago, but just was not ready) because he says it is time I start thinking more about taking care of myself and not the job. My husband went with me, but I do not know how much of this he absorbed. Anyway, I am ready and will for sure be back here to tell you all how it is going. In the meantime I am looking forward to a week with no chemo at all.
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This is probably one of the more stupid thoughts I have had in my life, but I am honestly thinking maybe I don't want to do this treatment. I was thinking yesterday how I am feeling good....really good....better than I have for a long time. My back which is a chronic deal hasn't even bothered me for almost a week. I have been going to the bathroom without the aid of laxatives or stool softeners since it has been three weeks that I have not had any sort of chemo. And I honestly think my memory is a little better or at least my thoughts are not quite as scrambled, but maybe they are really more screwed up that usual because never before have I thought about just not doing treatment. I know it would be suicide, but since my cancer has always been slow growing maybe I would have another year of feeling really great.....or I guess it could end up being painful. It's one of those things I just don't know, but I hate to give up feeling good to feel like crap. Many of you have been very helpful in sharing your SEs with me and in general you have said it is not all that bad of a treatment and is doable, But I also read that it did not work for several of you. I know it is always a gamble when you start a treatment as to whether or not it will work, BUT have any of you done this treatment and had it work on both your organs and bones? Right now my bone mets are unchanged from last scan and it is the liver my onco is worried about, but I need a treatment that is going to work on both of them. My tumor markers are really high, 2,177, and I know many of you had a dramatic drop in those, however when you had scans the tumors were still there. I guess my problem is I want it all....I want the tumor markers to go down and I want the tumors in my liver to shrink and I want the bone to not get any worse. Asking a lot, I know. Are there some of you who can tell me that this is a treatment that has really worked wonders for you?.....I hope so, for your sake as well as mine. I can deal with SEs if the treatment works. Thanks so much.
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Marybe, I want the same things you want. Actually, my onc doesn't even reference my bone mets since it's mostly the liver he worries about. He was excited about Halaven primarily because it attacks the cancer in a different way than the others out there. It did not work for me. But I'm just about at the end of the road, optionwise. I don't envy you having to decide which chemo path to take. But, of course, I wish you great results whatever you do.
Paula
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Hello All
We're back from Hawaii and had a wonderful time with the entire family all 13 of us. Nancy handled the trip surprisingly well. Spent most of the time at various beaches or at poolside at the hotel. Weather was great no rain. Nancy did not want to come home but had chemo appointment today. She started her 4th complete series of halaven this morning . We'll get results of CA15 blood turmor markers next wednesday with her ONC. Her white cells were good and she gained one pound since last visit but her red cells were little low so she is scheduled for one unit of blood transfusion tommorrow. She ate well all week of vacation no problems with appetite. She did have those night sweats most of the nights and around the same time 3 p.m. started feeling tired but after taking neurontin she felt better after about an hour. We did everything to make her trip easy and less walking to save energy. We bought her a wheelchair . It really saved her energy in long airport walkways and at places we went in Hawaii . Well got another appointment today with pain managemnt followup in 45 minutes so till next time we wish everyone the best. Thank you for all your support. Nancy and Steve
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Hello Marybe. My friend Tanya is on Xeloda, and is doing quite well. Started in November and is seeing regression. It is slow, but it is working. She feels good. Tired at the end of each week on, (she takes 1500mg 2x a day for 7 days and then has 7 days off), but other than that she really is holding her own. It took a few cycles to get the dosage right and since her side effects are scarce. We were talking with her onc last week and he wants her to consider adding something to Xeloda later in the summer to see if there could be a quicker, more dramatic result. Gemzar was when he mentioned, a small dose once a month. In reading I found that Taxotere and Ixempra with Xeloda also have increased effectiveness. Anyhow, I guess my thought is if you're feeling good, and summer is a coming, why not start with Xeloda? Something considered to be relatively mild, but something that works on both bone and liver, and something that can be amped up with an additional chemo if you are not happy with the results. Thanks for letting me ring in. Lisa
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Lisa, Believe me I would love to be giving the Xeloda a try, but my onco is quite insistant on wanting to proceed with Halaven. I am now three weeks with no chemo, just my Xgeva shot and I really feel good. Sometimes you forget what good feels like and don't realize you were feeling not so good until you get back to normal, if you know what I am trying to say.I have thought and thought about this and I am still thinking, even went back to see the onco again a day after my appt to ask questions. This onco has kept me going for 13 years and things were looking pretty bleak when I lst went to him so I feel like I need to trust him, but that doesn't mean I am going to like it. Thanks for sharing your friends experience....I have a friend on Xeloda and she gets it the same way a week on and then a week off and she is doing very well also. I still have another week to think about all of this.
Steve, So glad you and Nancy has a nice vacation. I am praying her tests come back showing great improvement. Marybe
Diagnosis: 4/1998, IDC, Stage IV, 0/19 nodes, mets, ER+/PR+, HER2-0 -
Thank you everyone for sharing your experiences on Halaven. My onc is on the Halaven bandwagon right now. I have bone only mets but very extensive throughout the skeleton. Did have one lesion in the brain that was zapped last year so that's not the issue right now. I did have navelbine when I was first diagnosed in 2008. Was stable for a bit. Then after some more progression did a short course on Xeloda in 2009/2010 but TMs continued to rise and there was more bone progression. I then did Quadramet (radioactive isotope) over a year ago (just after the Xeloda) that really seemed to help. The scan last fall (6 months after the Quadramet) showed only 3 of the many lesions were active - quite an improvement. But my scan in march showed all the bone lesions active again and quite a bit of progession in the bone. My skeleton lights up like a Xmas tree on the scans. The bone pain has increased alot and the TMs have been rising - although not nearly as high as I'm reading here. So I have a choice - Quadramet again (having a consultation about that soon since I don't know about any ramifications of multiple doses) or Halaven. So . . . after such a long story, is anyone on Halaven for just bone mets? It seems as though everyone here has some other involvement such as the liver. I asked about a taxane but I was on Taxotere with the original diagnosis and my onc feels Halaven is a better choice. Any thoughts? Thank you.
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Amy, I have bone mets only and am on my 5th cycle of Halavan. I will find out this week if my markers are down again. So far, so good!
Susan0 -
Halavanites....I hope everyone is doing well. I have more good news. My markers went down another 100 points! They are now 230 after 4 cycles down from 1030.
Paula, thanks so much for the info on L-glutamine. I quit taking the Neurotin because of side effects and am starting the L-glutamine today. I hope you are still doing well on your new chemo.
Susan0 -
Hi all,
Well my markers had been going down but just heard 10 minutes ago that my markers went up significantly again. Started at 875 in December, went on Halaven in early January, markers went down to 520 now back to 690. So, I'm going to try to go back on hormonals and try Faslodex again (it's been around 3 years) since they are now recommending an increased dosage.
Best to you all.
Annie
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Oh, Annie, so sorry. I had the TM drop on Halaven, too then they started climbing.
I hope the Faslodex does wonders, esp with the new higher dosage. And I hope you feel great on it
Glad to hear the news about the marker drop, Clemson. That is great news. I guess Halaven is going to be like every other chemo, works for some, not for others. But oncs do seem very excited about it.
My onc says there are two targeted therapies, one Imeltestat or something and the other I don't recall, right around the corner. In fact, the Imetelstate or whatever, is coming online soon for first-line mets. I guess they'll eventually get around to letting us second or ninth-line treatments get it eventually.
Anyway, I'm going on and on, must be the decadron. (BTW, Taxotere, which I've been pushing my onc to go back to for a year, is the only one so far - with Carbo - to earn me a "slightly smaller" on my scan report. So, I'm all for pushing onc for what you feel at heart might work.
Hugs to you,
Paula
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I havent written in a while on the halaven link. i have had decent results on it. i think i started taking it in feb. the only side effects i have had are fevers and tiredness, nothing that severe. i have been on chemo (six different ones) straight for over a year and the only one that really got me was ixempra. i havent had halaven in three weeks. my white blood count was way down. i went wednesday and count was normal enough to get treatment. things were different this time. i started having small fever wednesday night, 100. moved to 101 on thursday. started feeling really sick that day. headaches, fevers, nose bleed, no appetite, very fatigue. huge constipation. friday, i couldnt get out of bed. that night, fever up to 102.9. felt so bad. called doc on call. said it was the chemo and take tylenol and ibuprofen and call back if it didnt went down. fevers go down but i still feel like i have the flu. finally got out of house for a bit today. feeling a little better. ANYWAY, have you had a chemo that suddenly made you feel bad? it sounds like my white blood count is just getting hit hard. they said we could maybe change it to every other week but they said that before this weekend. what do you think is going on? (just did scans, all stable}
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Jenn, could be you got a bit of a bug on top of the chemo. Please also watch for the constipation. That can really cause big problems. And it could just be your counts have just taken such a beating, you need to rest, rest, rest. I hope you feel better tomorrow.
Paula
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Jenn, This last chemo I was on Gemzar made me feel like I had the flu two days after I had the treatment....I ached all over, it hurt to sit on the toilet seat because it was cool and I was hot and it just sent jolts up when when I sat on it, and my eyes really burned. That is always the first sign that I have an elevated temp, my eyes burn. My normal temp is about 96.8 or 97. We did not even have a thermometer in the house so I sent my husband out to get one and when I took my temp, it was 99 (no big deal for a normal person, but a temp for me) It kept going up and the highest reading was almost 102, I just stayed in bed, took tylenol, drank lots of water and ate popcicles and in the middle of the night woke up all wet and even the sheets were wet and then my temp started going back to normal. It lasted for a little over 24 hrs. The onco nurse tried to blame it on the Xgeva shot, but it happened again the next time I got chemo and it was not an Xgeva week....my temp did not go as high and the achiness did not last as long and then it never happened again. My theory is that my body adjusted to it.
Is there a possiblity you might have actually had the flu. Maybe you picked up something if your white count was low. I hope you are feeling better and am glad to hear they your scans are stable.
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I've only been on one cycle of Halaven - will start the second on Monday. I've noticed that I can feel some effects while they are pushing it. The following day, I feel even more. I don't get much of a protection window from the premeds. Also, I've done a lot of chemo but constipation is particularly bad with this one. If I don't stay right on top of it, it upsets my entire GI tract. Hope you feel better!
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Oh joy. My bowels are now just finally back to normalafter being off chemo for 3 weeks. I was constipated the entire time on Navelbine and Gemzar. In the big pic, this is probably petty, but it's those little things that really get to me. I think maybe I will try the suppository route along with senna since sometimes the senna didn't work.
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Have you tried Miralax combined with the Senna? I do 2 tablespoons of Miralax in orange or cranberry juice at night. This combo works for me but I have to get the dosages right for each chemo.
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I'm new to this forum. Wish we could all have met under different circumstances! I just started Halaven on Thursday - first dose. Anyone have/had any intense pelvic pain with it? If it keeps up, I'm calling doc tomorrow.
My oncologist is so excited about this drug - hope he's right - this time..... My original diagnosis was in 1996 - 2.5 cm tumor ER+ at age 37. Did 4 months of Adriamycin and Cytoxan. Was good for 7 years then BAM - the news/phone call you never want. The tumor markers are on the rise. Scans show activity in the supraclavicular/mediastinal area. Biopsy shows same breast cancer - and later determine it is also HER2/neu +. Since 2003 I have been on so many chemos and had radiation twice - first to the neck and chest area in 2006 just to zap some of those pesky nodes that kept resurfacing since 2003. I think I've done most of the chemos out thre but my oncologist (prior to now) kept telling me there was a whole arsenal left to try. Over the years I've been on and off and on again Herceptin. Sometimes mixed in with something else - sometimes just by itself on the rocks! Cancer would usually leave me alone for a year or so in between recurrences - am now on my 6th! August 2009 went to ER with abdominal pain, extreme fatigue. CT of abdomen showed pericardial and pleural effusions. Admitted and sent to OR next day for pericardial window, had VT treatment with Amiodarone during pericardial evacuation. 800cc of pericardial fluid drained and 2 liters of pleural in the OR - coded on table. Returned to CCU with left chest tube and rigth sided portable Pleuravac. In CCU for 10 more days. Post op LV EF lows 20s. EF rebounded 48 hours to 55%. Developed acute SVC Syndrome post-op - hands, upper torso and face extremely swollen and bluish in color. CT of chest showed large left subclavian thrombus - treated with Heparin and discharged with daily Arixtra injections. They didn't expect me to walk out of that hospital but I did. Pericardial effusion positve for malignancy, pleural fluid was benign. Had Pleuravac in for another 4 months until fluid down below 50 cc/day. Put on Xeloda and Tykerb - then switched to a combination of other drugs. First PET/CT scan was clean, so was second - 3rd not so good. Cancer was spreading even while on chemo - frustrating!! In December, 2010 5 cm mass shows on cervix/uterus - biopsy shows from original breast cancer but yet it is ER-. Plus mass is putting a kink in my right utereter and kidney is blocked - nephrostomy tube put in January, 2011. Has it morphed into something else over the years? Apparently, the original recurrence in 2003 was part ER+ and part ER-. They treated me drugs that work well with ER+ I guess because this thing is now ER-. Started 3 weeks of 5FU and 26 radiation treatments in January - they were confident they were going to be able to treat this thing. It only shrunk a bit and latest PET/CT shows the cancer has continued to spread - now starting to show up in bones/hip, internal mammary chain and the heart. CT and TEE shows a 3cm mass extending into the right inferior vena cava. I go to oncologist this past Monday figuring he's coming in to have "the conversation." But, he's hot on Halaven - mixing it with Herceptin and Arixtra again (to prevent anything breaking off and going into the lungs). So, we'll see..... They didn't expect me to survive in 2009, so what the heck. I say, if there's a drug out there that I haven't tried yet, bring it on. I keep reminding them you just don't get me - everytime I get knocked down I'm gong to keep getting back up..... until I just can't anymore.... Best wishes to all who are going through this horrible disease and to those who love, care for, and support us during this journey!!
Enjoy your day - it's a beautiful one here where I am...... There's a great Hooters Song called I'm Alive - YOUTUBE it and listen to the words...... I'll give you some anyway......
I've got a condition for which there is no cure.
I'm in a position that everyone prays for.
Got a sound in my head that could wake up the dead.
Like The Who singing Summertime Blues.
Got no thorn in my side, got no secrets to hide.
I'm completely and utterly amused.
I'M ALIVE..... I'M ALIVE
IT'S A BEAUTIFUL DAY AND I'M HAPPY TO SAY
I'M ALIVE..... I'M ALIVE
AND WHEREEVER I GO IT'S AMAZING TO KNOW
I'M ALIVE!
<SMILE> So sorry for the length of this! I do tend to go on and on and on.....
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ToughIrish:
I have two posts above regarding the very bad constipation I've had with this drug. It can make me feel bad from my breastbone to the top of my thighs until I get it under control. Please watch out for that.
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Nurse-ann:
Thank you. I had read and had heard that constipation was one of the side effects. I just didn't expect it to occur so quickly. After 15 months on chemos that gave me diarrhea, I thought it would ber a welcome change - for a bit at least. I'm thinking the pains are related to the change in the bowels. Had similar pains when I first stated Tykerb and Xeloda.
Thanks for your input! Appreciate it.
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Hello Jleigh
Sounds like you're on the same train Nancy is on. Fever, occational low white blood cell count , lack of appetite, tired, fatigue, cant get out of bed diahrea , chills, constipation, all intermittent or occational. Our ONC said it's the chemo and side effects from other pills like neurontin or gabapentin percoset for pain etc... Chemo kills the cancer cells along with white and red blood cells too. In two instances Nancy had to have lukine injections to pump the white cells back up. Also in two instances she had to have blood transfusions to get the red cells up. Some people take one shot neulasta to get the white cells up but most people dread neulasta. I've read so many bad comments about the drug side effects. Our ONC said lukine is a lot easier than neulasta but it's not a one shot thing like neulasta. It's two to four injections prior to chemo day depending how low the count was. It's given one injection per day. So far as lack of appetite. They gave her appetite enhancement and anti nausea meds. There are several kinds. Chemo also can mess up your tastes buds so when you eat something you really dont feel like eating more. We go to favorite resturants for her most favorite foods either for dine in or take out. Do whatever is takes to get nourishment. It will help maintain white and red cell count which means better protection from other virus like colds , flu, etc. Red cells take oxygen to all parts of the body which gives you better energy less fatigue. The fevers are almost daily accompanied with hot sweats mostly during the nights. Temperature would range from 100 to 103. At times she would take tylenol. Tylenol is also in her pain killers meds percocet she takes for neurapathy. Its either one or the other we dont want to take them both which would cause a tylenol overdose. Doctors have told us fevers are a sign that cancer cells are dying. But it kills the whites and reds too. So far after having three complete halaven series Nancy has had two instances where the reds needed blood tranfusions. One time for two pints and this past wednesday starting the fourth halaven series she had to have a one pint transfussion. Since you both experience similar problems read our past inputs. They may give you a clearer picture of what Nancy has been through. I hope this info helps. Nancy and Steve
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Just finished my 6th round of Havelen (12 infusions total) anyone else make it this far on this juice? I have to wait for scans due to insurance problems. Whole other rant there. This weekend was tough. The fatigue had been building the last several weeks but manageable. After my Nulasta shot on Saturday though I was wiped out.I watched a lot of 80's movies on tv. I have a very odd pain in my hand that happened overnight. Very similar to arthritis. Hurts to hold things and open jars. Just my right hand though.
I am taking a break from Havelen until after my yet-to-be-scheduled scans. I am hoping to get some energy to clean this house and plant my flowers.
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Pattih, I am finishing round number 5 and also feel the side effects getting worse. I noticed pain in my elbow. It feels like tennis elbow to me. I have also noticed some muscle spasms in different parts of my body so I wonder if we are more prone to muscle pulls. I wish you the best of luck with scans!
Susan0 -
Hi Susan yes you are right - weird muscle spasms in my calves also. Also I did not have the constipation problems everyone else seems plagued with this last round. This last one has been completely different. Good luck for #6.
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Hi All,
I'm in the same boat as you. Going to start Halaven in 3 weeks. Been on Doxil for the last 7 months, tolerated it well. Was stable for a few month but now the marker is rising and pain is increasing. Lots of bone mets, spine and pelvis mostly. This is my 10th drug since my recurrence 4 years ago. Feeling a bit beat up. How often is this drug given.
-Katie
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