Halaven - Day 1
Comments
-
thanks RonnieKay..I'm at the point where it's like do what you gotta do to keep me alive. I'm 31..lost my breasts, lost my chance at having children on my own (thanks to fertility I have 21 embryos waiting) I don't want to go anywhere. I'm to young for this! So I continue to fight. I'm grateful it's not in an organ it's just some nodes but I want to kick them to the curb before it turns into a disaster! I just can't believe a two years ago I had not one care in the world, healthy about to be married then BAM! This all happens. Thanks Brca gene! 😩
0 -
Jill I'm so sorry you are here. It sucks and agree you are a young woman. I hate cancer. Halaven can make you lose your hair. About 47% lose hair. Mine thinned a lot. I could use that stuff you brush onto scalp by Joan rivers makeup but wear caps and gives the appearance of full head of hair. If you kept hair with taxol, I suspect you'll be amongst the thinning group. Smart idea saving embryos. Halaven caused a neutropenic fever on first treatment resulting in a hospital vacation. It was determined the combo from previous chemo was too close. After recovery dosage is fine and I'm functioning just fine. Fatigue can be an issue so I plan for rest 3 days post infusion. I thought taxol was more difficult for me. Good luck. Keep me posted.
Love
Maureen
0 -
thanks for the info! I didn't lose my hair on taxol at all, it thinned and like small clumps would come out in the shower but I still have a full head of hair. I already use that stuff by Joan rivers because my sides are VERY thin so when my hair is up you can't even notice the baldness. I've been so lucky to not lose my hair at all but if it happens, it happens. I tolerated taxol well. By day 3 I was fine and back at work! No nausea or anything? I rarely had nausea with taxol. The main question is..did Halaven work for you?? I'm combining it with carboplatnin so I'm praying it gets rid of these nodes!
0 -
I take Zantac for heartburn and 4mg of dissolvimg Zofran every so often when nausea rears its ugly head but pretty rare and easily controlled. The 4mg is probably close to a pediatric dose but nausea isn't my thing and I like to eat whatever I want. The other chemo you mentioned may cause hair issues so get a couple hats just in case.
0 -
so far halaven seems to be working. Liver enzymes are normal and markers are dropping. Pet scan planned for September so confirmation of success at that time. My markers are usually clear indicator of mets so I'm hopeful
0 -
funny thing is..I get a CEa done which has always been normal..ca 27.29 which spiked to like 50 at one point but now normal and my liver enzymes were thru the roof on taxol and carbo my last round. I stopped carbo since the 1st week of July and kept taxol but then my enzymes went up and down. Carbo worked for me got rid of a positive node from February to June. I think taxol stopped that's why I'm changing now! I'm a little nervous about the hair. I've been so lucky to never lose it but it is what it is!
0 -
it appears your markers do not reflect tumor growth. That is a common issue with markers causing many oncs to rely on scans etc. spiking of enzymes can be reaction to chemo or tumor flare. Hardto tell in some people without supportive scans. Losing your hair the first time sucks. It's one of the outward signs you are sick. I hope you can hang onto the bigger picture of kicking this crap into remission for a long time and enjoy life. Did you happen to request the information that a women named bestbird on this site has put together. It's a comprehensive document that discusses different chemos and such for stage IV mesters. There is a pin at the beginning of SIV threads for requesting info.
Maureen
0 -
What thread is it? I am just getting use to this site.
0 -
I just saw her message, she is away until mid September! Just my luck!!
0 -
crap. Send a private message and maybe she'll check the site when she's away. You need to add her as a friend before you send message. It's a PDF file so I cannot cut and paste without her permission.
when is your first halaven? I'm going tomorrow for #6 I think. LOL I can't remember anymore. Then camping for the weekend. I don't think they have WIFI and response might be delayed.
Hugs
Maureen
0 -
I start Monday. Would you think getting halaven on Monday I would be able to work on Wednesday? I was able to on taxol.
0 -
I'd guess yes. I'd be concerned for the demanding nature of your career. I was an engineer and could work from home if necessary so I worked right through treatment with no issues. Is it possible to have a coworker on standby for the first few weeks until you know how you'll react? ICU nurse is pretty intense.
0 -
I thank god work 3 days a week only. So as long as I feel good I go and do my 3 days. I was on disability for a year and a half and it was horrible. I actually went back to work this past July since we realized how I was on taxol and my blood counts never really dropped much enough to be at risk. My job works really well with me so my boss is on standby for Wednesday in case I don't feel well. But if I have no nausea and not much fatigue I should be fine. I guess Monday will be a test run. Hope you enjoy your camping weekend! I'll keep you posted on Monday after halaven #1!
0 -
Got my first dose this morning..felt tired this afternoon but i also had a busy weekend. Other than that, I feel good! Lets see what tomorrow brings! ;-)
0 -
Great news Jill!!! Stay strong. Just arrived home from camp. Great weekend. I had a chocolate martini my liver didn't appreciate but I did LOL. tried to learn how to line dance for country night and enjoyed family. Good weather. Highs in upper 70s and nights in the 50s. Wonderful.
0 -
How are the halaven girls doing?
0 -
I had my Halavan on Tuesday...I believe this would be about my 6th or more which I have every 8 days..and once a month I have halavan...Falasdez...and bone booster (Xevada) ? I have been doing really well for about 3 mths..when I got that late 6pm call from OC say that my tm sky rocketed from 300 to 800 ..Question to you ladies..how low has any of you gone with tm and were doing well ...So CAT scan scheduled for next Friday...just made my OC a little curious..due to the fact I have been feeling and doing so well gaining weight ect.
So of course I go through a Emotional/Mental breakdown for 24 hrs...say gee louise what the Freak now...Been able to go to functions/camping/enjoying life the last 3 mths...and then BANG!!!!! It gets all shot down...DAMN IT!!
So I'm going on this weekend worry
Question for you ladies...How are you all with drinking Alcohol...such as wine...My OC told be to enjoy a few glasses on weekends..I have not indulged...but some nights it would be nice to just enjoy some Pinot Grigio...glass or two...to just relax ..I been around others that have indulged with wine...who their OC has told them it would ok on a Occasional basis only...OPINIONS please.
Just thought that Cancer Cells feed on sugar and that is any sugars am i right...
Sitting here with my thoughts while i'm trying to figure out what I did or didn't due to have the tm go up..i'm just so sad
It's like a roller coaster 3 mths well ...now probably 3 mths down..up down up down..enough all ready please...
Love and Respect and prayers to all you beautiful ladies...Carla
0 -
Hi Carla. I'm sorry to hear of the sharp increase in your tumor markers. My halaven schedule is two weeks on and one week off with the bone boost every other month. Doing ok so far. Sometimes the markers aren't reliable so scanning to see what is going on inside your body makes sense but I know the feeling of the late night call. When the phone rings after a scan I can physically get ill. Take some deep breaths and get through the scan so you have the whole picture to make the next move.
Alcohol opinion: every onc seems to have a different opinion. My onc says everything in moderation. I will have a glass of wine every so often and a chocolate martini at lunch with friends monthly.
Sugar: I don't shy away from sweets occasionally but avoid before scans and in moderation.
You did nothing wrong. Cancer is a pain in the ass. If alcohol and sugar caused cancer they'd have a cure. It's a crap shoot and very sneaky beast. There are so many pathways to grow hence the different chemos. Your onc is ahead of the beast and if something changes they have to change treatment. Everything contributes to cancer. I believe catching the changes early is key.
Good luck and post how the scan went
Hugs
Maureen
0 -
Hi All,
Carla, I am sorry to hear that. I am unfortunately heading in the same direction, probably. My tumor markers started at 380, down to 230 and now 280. I still feel great compared to how I was in May, though, so I am frustrated. I've only been taking Halaven since June. Booooooo!
With respect to alcohol, my onc has never specifically prohibited it, but my liver has been so inflamed off and on that I just don't drink. The few times I have tried, I ended up feeling nauseated.....dang it. I just want a cosmopolitan or a mojito!
Liz
0 -
Hi Ladies!
I sem to be doing well on Halaven physically. I do not get sick and I usually feel pretty normal on it. Did not lose hair, I am on tx #3 that I got today. I get it day 1, day 8 and on day 8 they give me carboplatnium as well. Now thats annoying!
Im having a problem with my clavicle again. Last year in November it fractured randomly which turned out my Stage 1 early cancer, cancer free they actually told me in October 2014 turned into stage 4 because the fracture ended up being bone mets. I got radiation during christmas break and it was gone by Februarys scan. August 2015 scan shows a small area on my clavicle next to the old mets lit up. So thats why Im on halaven and carboplatnim. (along with two nodes in my chest under 2cm that lit up) Who knew a small area on your clavicle and two positive nodes makes you Stage 4..but anyway my clavicle has been killing me again..tried to ignore the pain until my December scan but its getting annoying..went to my radiation oncologist who finally listened to me and scheduled me for a CT scan of the chest. I am just afraid of another fracture, or maybe this new area on my clavicle needs to be radiated! The RO said it could be inflamed from chemo targeting the area and aggravating it..but come on do we ever believe doctors these days??
Fingers crossed my scan is ok!! Hope all you ladies are doing good!
0 -
Hello Halaven Ladies!
I have been on Affinator for almost a year with so so results. Markers went zooming upwards and scans showed some slight growth in the liver tumors.
So here I come Halaven! I now it sounds so petty but I have done the hair loss thing before and I hated the wig. For the pat 2.5 years I have been working and living my life with none of my co workers knowing anything I would love to keep it that way but the SE of hair loss makes me think that the jig is up. Any ideas? My hair stylist has suggested getting the wig and then styling my hair around the wig so that it just flows together. I am optimistic for this treatment and I tolerated the SE's of Affinator very well. My workplace thrives on gossip and I am a private person so keeping this private is really important to me.
Thanks for listening and I appreciate any advice. I know I am fortunate to be able to continue my life as "normal" and I am so grateful for that!
Cisco711
0 -
lost my hair for the fourth time. Can be tough but I purchase wigs at a local place who trims and has lace top. They look very real and work nice. I didn't care for real hair wig because it's too much work. Good luck at work with the rumor mill.
Maureen
0 -
question
What is your cycle for halaven?
0 -
Hello ladies, I am starting Halaven today. Have already been on FEC-T, Tamoxifen, Xeloda, Vinorelebine (Navelbine) and Taxol with no response. Liver mets continue to grow with new ones appearing and bones are active as well. Stage 3 BC diagnosed at the age of 38 in June 2012 - liver mets dx December 2013 followed by bone mets Sept 2014. I am asymptomatic and feel great. I have chosen to stop working as a law clerk to focus on raising our 3 beautiful kids, 16, 14 and 10. Soccer is a huge passion in our family - all 3 of my kids play at the competitive level and my middle son has had the good fortune of experiencing soccer in Europe. Not having a second income has added a large financial burden but I try not to stress about it as I continue to be thankful for my blessings. I am also very active in treating the disease in a holistic nature as well. I use a lot of immune building vitamins (ganoderma, chaga). I ate well, exercised regularly (ironically I found the lump myself in a zumba class), had an occasional glass of wine and piece of chocolate cake and I still won the Big-C lottery!! Thank you ladies for sharing your experiences, being able to connect with others on this journey is a silver lining. Wishing you all healthy and blessed day ahead!
0 -
Hello Halaven ladies (hello SoccerMamma3!),
I have started Halaven (Dec 1) and have my second dose of 1st cycle is Wednesday. I have just come off of Taxol which worked well for 8 months, but slight progression in my liver and lungs have become active again (after being silent for over 2 yrs). So on to Halaven!
I guess I have been very lucky so far, of the several treatments I have had so far, I haven't had any se's that have stopped my treatment or caused me severe problems (ok hand and foot from Xeloda sucked). I even have thinned hair left while on Taxol..............but Halaven and I don't seem to be getting along so well! To add to my frustrations, I also have my trusted Med Onc moving across the country and am getting a new one that doesn't know me.
If anyone can help me with some info, I would appreciate not feeling like I am going crazy! I have read a bit back on this thread to try to get a good overview and everyone's contributions are much appreciated!
So here goes:
I am having terrible heartburn- my centre thinks it's nausea but the anti nausea drugs barely touch it. I have read on here about heartburn, took some of my husbands Nexium and felt so much better. The centre doesn't seem to think this should work.....
I have been taking a half dose of Celexa (5 mg) to "take the edge off" and only use Ativan occasionally for sleep, otherwise I use melatonin with no issue. This weekend I was extremely anxious with heart racing, feeling depressed (truly not normal for me) and sad. I truly do not feel like myself from 1 week ago! Again the centre thinks this is odd and not Halaven related.....is it me?
I want to keep taking this drug as I am ever the optimist that this might be the one, and I'd hate to come off of it if I can't get this all figured out.
Anyone with similar experiences?
My best to you all,
Maureen
0 -
I had my 2nd halaven treatment of round one today. It sure is easily administered! I will have next Wednesday off and receive the first treatment of round two on January 13. So far side effects have been mild nausea and constipation (which could be from the nausea meds). My counts were good today. I do feel more tired than I have on other chemos. Seems like there isn't a lot of action on this thread. I'd sure like to hear results from some of you who have taken it.
0 -
Still feeling pretty good after my 2nd halaven on Wednesday. Was able to go to a couple of meetings yesterday and out to dinner last night with my husband and some friends, slept well, even on the decadron. Sometimes I want to feel some se's to know the chemo is doing some good but then again, it is nice to go about my normal activities. Am taking miralax to keep things moving but that's about it. Onc has upped my fentanyl patch to 50 from 25 and that has been a tremendous help.
Maureen, no problems with heartburn. How is it going with your hair? Is it starting to grow back on halaven? Sometimes that happens.
Soccer Mom, how are things going with you? You're about a month ahead of me on halaven. Is it going well?
Cisco, did you lose your hair? What I read said 50-50. On some chemos I lose mine and on others I didn't. My hair grew on navelbine so I'm hoping to keep what I have on halaven.
Re drinking, the literature says no or minimal alcohol. My oncologist has always said drink red wine becaus of the reservatrol (sp?) in it, but I haven't asked him specifically about drinking on halaven. I usually don't drink during chemo weeks anyway, figuring the liver is already working overtime. During my off weeks I usually indulge in a glass or two a night but haven't decided what I'll do this time. The pharmacist at my chemo center did ask me if I had had drinks the night before when my liver counts were high. That did get me thinking that maybe I should do without.
Hoping to hear from some of you on halaven. Am guessing the holidays have kept everyone too busy for BCO. I go in spurts myself.
Happy new year! Glenna
0 -
wow your my inspiration. What kind of holistic medicines and vitamins did you use. I'm really big on the vitamins, but would be interested in what you took and how you are doing. I just got diagnosed with liver and bone mets.
0 -
Hello Ladies and Happy New Year!
After a great week away south, I am feeling really good. I had a tx before I left, missed the second dose and now go in this week for day 1 and next week for day 8- I will be 2 1/2 cycles by next week. The heartburn persists but everything else is seeming ok. I still have my hair, but it is thinning.
I return to work tomorrow, was taking that day by day since I started this tx beginning of December, but I seem to be ok for now.
Wishing everyone well and great responses!
Maureen
0 -
I was started on Halaven and Faslodex about 1 1/2 years ago. My TM's seem to be a pretty good indication of what is going on with the ILC in my abdomen. After about two months my TM's started going down and four months after that were in the normal range. A CT showed no evidence of disease. Yay! NED! MO stopped the Halaven. Then about 5 months later the TM's started going up again. The Halaven worked before so why not use it again. TM's went down again and I've been off Halaven since late October. CT in November showed something suspicious in thoracic and lumbar spine. PET showed NED. I asked my MO how he could be sure since ILC can be very hard to diagnose from scans. He said it showed very clearly 1 1/2 years ago.
I'd love to say I feel great, but I still have some abdominal pain. Lots of pain from neuropathy and generally achy but no problem getting around. Both times I lost about 1/2 hair on Halaven, but it grew back in the six months off and is growing back again. I'm still feeling a lot of fatigue but not as much as when I'm on Halaven.
Right now I'm on Faslodex and Aromasin but I'm pretty sure I will be back on Halaven when my TM's start to go up. I also take Protonix for acid reflux and Ursodiol for a "sandy gallbladder"
I hope this was of help to somebody and that we all can find that magic that will give us a little more time.
0
