Halaven - Day 1
Comments
-
Wow. I am SO glad to have stumbled across this thread. My oncologist informed me today that I will be starting halaven next week. What's halaven? I've been researching like crazy. It sounds like the side effects are pretty standard for chemo. But I, too, am wondering about hair loss (as my hair is just starting to become manageable after 8 months of chemo and then a few months on various hormone therapy).
I'm so glad to be reading what everyone is posting about their experiences with halaven. I will definitely be following this thread (and maybe posting my experiences, too). I'm anxious to ge to "know" everyone --- as I'm new to the forum. It's such a comfort to hear the stories and even the ups and downs of this cancer journey we all share.
0 -
Congratulations to you trail blazers. Keep giving us updates! Your successes are our successes!
Glenna0 -
Hi, I have only completed 2 infusions and tomorrow will be cycle 2 if my counts are okay. My hair has thinned alot so I sport a very short pixie cut at the moment; haven't had one in almost 50 years. I am asking to have less decadron. i have never been nauseous just the fatigue, mouth ,throat sore, funny taste buds for a couple of days, increased acid reflux despite the nexium, mild constipation. okay enough of the se's. Just wish I had more days of feeling normal other than the few I get right before the next treatment and it is funny when the bottom of y feet go numb. i am so glad someone else posted their se's so i went gee it's just the se's from the halaven. i am still in favor of starting the traveling halaven tee shirt. our sea sponge mascot. penny
0 -
Hey Penny and Elizabeth: Keep on keepin' on. My S'E's are about the same, but they are tolerable. I'm really tired, but my HCT was down to 10 last week, and if it's under 9 this week I'll probably get a couple more units of blood. Chemo seems to knock my bone marrow a little hard and make me very anemic. I've had 3 transfusions in the last 7 months, about every 2 2/1-3 months. Oh Well. They sure pep me up again!! I get 2nd dose of 2nd cycle tomorrow. My skin mets are really starting to look like they are responding !!! That is SOOO good. My head is going to be shaved this weekend; falling out very fast now. I hate the falling hair stuff; would rather just shave it and be done with it. Hey, I'll research the Sea Sponge and see if we can get a shirt going! Elizabeth: Keep us posted.... !!
0 -
i am back to sleeping with a hat on or trying to anyways. the joke on me is i keep my feet stuck out as some of the xeloda must be still in me. any knittters who could make us funny sea urchin hats only kidding. penny
0 -
Now that is a funny idea! I'm wearing a little stocking cap at night too... .I really don't mind being bald except that it's winter and it's just freakin' COLD not to have hair !!! LOL I guess bald men get used to it.....
0 -
so i've read this WHOLE thread the last few days, thinking i may be joining you all soon. I've been doing well on Xeloda but it's efficacy may be waning. we'll see.
0 -
Help! I moved to be nearer to my college students after dancing the mets dance for 2 years already. Time is precious. I interviewed this general hemonc prior to selecting her. I had to go from xeloda and dana farber said halaven now. today was my second cycle day 1. I went thru ses and said i finally felt great the week coming into the new day 1. i said less quality time than xeloda but glad not to have hf anymore. she says to me it doesn't sound like you have much quality of life. this is from a dr who wrote a book about medicare spending too much on a persons last months. i replied politely that only the individual can decide about the quality of her own life and that the week coming into treatment was pretty okay. yes my q of l is different now but i felt she was putting $ tag on how much it takes to keep us alive as we are terminal. this is a small town and i have scheduled a consult with another older onc next week unfortunately they take call for each other. i was polite but now i am pissed off. who are they to decide what the hugs and time with our children and friends is worth. thanks for listening. Penny
0 -
AMEN Penny! "Quality of life" is totally subjective to the person living it !! I might be a quadreplegic, but if I can talk and watch my children play and be part of the family, isn't that worth everything?? If I am not totally 'functional' like I was a year ago because of my cancer, does that mean its time to pull the plug? NOT in a million years!! Hope the older doc has a little more compassion & wisdom about him.
Had my 4th treatment today; doc is impressed (as I am!) with the appearance of the skin mets. This lovely sea sponge concoction appears to be kicking A$$ ~!
Met the only other lady on it today too.... we have known each other for about a year, but we didn't connnect the dots when they told us that "one other lady is starting Halaven today too".... LOL Of course, we didn't ask for names. Her experience (s/e's) is about the same as me... so, not too bad. Hang in there Penny..... !! It's more important to be near family than it is to be near a world renowed cancer center. You are educated enough to know if you are getting good treatment or not, and there are always Oncology centers near you where you can go if your small town just cant' cut it.
0 -
I do not have cancer...dont shoot me...my partner of 5 years was diagnosed with stage 3b in May of 2010. In May of 2011 she was diagnosed with stage 4. She has been on a few chemo drugs and to be honest, I only know a few of them by name. She is starting Halaven next week. I am in hopes that it will make her feel better. She has lung mets that the onc is trying to kill. She doesn't have mets any where else...that is good news...I'm just lookin' for a little support...hope I didn't step on any toes.
0 -
thank you for the support karen. i wish onc could be made into ca patients for awhile like they have teens care for pretend babies. here's hoping the consult will work out i hate to drive or take the medical vans further but will do what it takes. the other onc has given halaven already to several patients and has 20 more years experience. doesn't mean her bedside is any better but i'll see. question on giving the drug the current office ran it thru the pump and today they gave it on gravity drip with more saline to make sure no drug was left in the tubing. the onc nurse told me ahead of time just said doing it differently now. i asked if previously i had received the full dose the way they had been giving it. she said yes. how the heck do i really know for sure other than the ses. karen because my brain is a sieve how many cycles (2infusions=1cycle) for my brain have you run. great news about your skin mets. i feel this drug is working due to less bloating and when i feel better i really feel good. thanks penny
0 -
Penny: Yes, I have been given both ways; kind of which preference of what onc nurse is treating me that day; through an injection slowly, and also through the IV set up with a min or two of saline to clear the line. I just had cycle 2, treatment 2, so 4 total. 2 weeks on, 1 off.
Donese: I pray this works well for your girlfriend... the other lady doing Halaven at my clinic had lung and bone mets, and in fact was on oxygen because she couldn't breath. In just 3 treatments, she is off her oxygen !!! Don't give up hope, stay supportive, and yes, even those without cancer who are taking care of us who do have it can get support and answers here. Welcome. (esp since you are a fellow Texan in AUSTIN !!)
0 -
It's really been hitting me hard that I'm going back on the dreaded "chemo" again. I start halaven in 5 days. While I'm glad to have these next few days to pamper myself and eat LOTS of yummy (and yes, perhaps unhealthy) food, I'm starting to think more about the days ahead. I've enjoyed being off of chemo for these past 7 months and am NOT looking forward to all of the fatigue and nausea and just how much energy has to be consumed in just existing and getting by. I don't like it when cancer is forced to be more at the forefront of my mind. When I'm on hormone therapy (even though it wasn't working), it's easy to pretend that I don't even have cancer. My energy is great, and aside from the normal pains of cancer, I'm not having to deal with side effects of treatments. My hair has started coming back in, and I love it. I feel like my body is finally getting back to "normal" after 8 months of torturous, toxic chemo. Am I truly ready to start all over again?
YET....I am so encouraged that halaven seems to be working for so many of you. Oh, how I would love to see this cancer more stablized so that I won't have to be on chemo for too many months.
So here I am....living in the present, thinking about the future and trying not to let the past bring me down.
Thank you all for the positive attitudes, the encouraging stories and the bravery you endure every single day. It truly helps me to remember that I'm not alone. If YOU all can edure it, then so can I!!! :-)
Elizabeth
0 -
Karen-
Glad to see a fellow Texan! Robin, my partner, had another 500ml taken off her left lung three days ago when they put the chest tube in so we could drain her chest at home. Last night another 500! Good Lord please give me strength. She's coughing up a storm and the onc today gave her a steroid pack to help with the lung irritation and a cough suppressant to help with the persistent cough. The last CT taken a week ago showed increase in METs in the lung and there is something questionable in the liver. God, if your listening, I need a favor: we need some good news...
I am glad I found this thread and I am glad I haven't been kicked to the curb!!!!
The information given here is impressive and well needed. It is through others that we get support, love, and encouragement. Thank you....0 -
I suppose God heard my request! Robin is better and the steriod pack is helping with her lung irritation. She is breathing better, talking more, EATING finally, walking around the house more, and sleeping better. We may have turned a corner!!
0 -
HI LADIES.....WELL STARTED DAY ONE OF HALAVEN YESTERDAY.....ONC INFORMED ME PROBABLY NO SE FOR A COUPLE DAYS.....GO FOR SECOND TREATMENT NEXT WEEK IF LABS ARE GOOD.....IT'S BEEN GREAT COMING ON HERE AND SEEING HOW EVERYONE ELSE IS DOING....THANKS FOR ALL THE POSTS!
0 -
Donese: Thank God that there is improvement... I am praying for more for Robin!
Alice: I think you'll do well... it's no worse than any other chemo. Unfortunately, we all have our own little issues with certain side effects, and we're not all the same. I pray you sail through!
Elizabeth: I hate that you have to go back on chemo also. It's such a roller coaster. Keep your chin up and know that every treatment gives you life, and that's all what we're about. I would just LOVE to go without chemo for a few months, but don't see that happening, but I just finished two complete cycles and there is dramatic (YEA YEA YEA) improvement in my skin mets and lymph nodes already... it is exciting to see a rapid response. Overall, I don't feel quite as good as I did on Avastin/Abraxane, but not majorily worse either... I can't tell if I don't have any energy/pep because of the chemo or if it's just the winter doldrums I get every year!!! LOL Anyway, naps help
Some slight neuropathy for a couple of days, and the dreaded constipation, but that's manageable. I have a cold now, so that doesn't help. The major 's/e's' of feeling 'nauseated', constipation, etc, are the first 3-4 days... then it goes away. I don't really have 'nausea' per se... it's just no appetite, what I do eat doesn't agree with me or taste good, etc.0 -
I am glad halaven cycle 2 day 1 wasn't so bad. i get hit hard day 3 then gradually better although i don't drive until day 6. i am going to try less decadron for day 8 treatment tomorrow. down to 8 so may ask for 6. the halaven hairstyle leaves alot to be desired. anyone have info on when hair starts to grow back? i also upped my nexium to 4o mg bid and the elephant foot on my chest was somewhat better. i stick with the benefiber and miralax. i agree with karen the taste is off but comes back so i don't eat the expensive chocolate until then. i would still like to get a halaven tee shirt going or a flat sea sponge like flat stanley and could take a picture and post it. if anyone finds which sea sponge our drug comes from let me know. i guess eisai should know. i think i felt better as the xeloda was finally wearing off and i bet my markers are down but i prefer to wait until cycle 3 is over. i hate scans/reports more than chemo at least i feel that way today. penny
0 -
Penny,
Interesting idea, flat stanley....ill have to work more on that idea,0 -
Well, I just had my first dose of halaven this morning. I must say that I'm already not a fan of the decadron. I will probably request a lower dose next week. I feel like I have tons of adrenalin pumping through my veins and my vision is doing crazy, weird, shaky, blurry things. From past experience I usually handle chemo and pain better than the pain killers! I'm glad to read this thread and learn that it's okay to modify the pre-meds.
Right now I can't sleep--although I'm extremely fatigued. And I have a pounding headache. I'm not convinced these are related to treatment, though.
I can't tell you how excited and hopeful I am about this "new" chemo drug! Keep on coming with the comments--all you fellow halaven-ians! It's great to know I'm not along in this particular season!
Elizabeth0 -
Well..my break for the holidays is over...back to the Halaven today...I have to be there at 9 and its 822am...can you tell how excited I am to go back to the cancer center...
0 -
Elizabeth: haha... yes, can really tell you are excited ... just remember to hug those chemo nurses anyway.
Steroids affect everyone differently, but yes, they can be adjusted, thankfully ! I thought my blurry vision was decadron too, but turns out it's the zofran (anti-nausea) I get also. Elizabeth, do you get zofran too? For about 36 hours after decadron, I tell my hubby I feel like Jabba the Hutt from Star Wars... a big, bloated, blob of blathering nothing. LOL I'm disconnected, can't focus or concentrate (lordy, I almost burned our dinner the other night, forgot I was browning hamburger meat!!) and it's just the weirdest feeling. Just thankful it's not continuous... couldn't live like that !! Fortunately, I've not had too much trouble sleeping ... but then, I am on continuous hydrocodone too. Before Stage IV, when on chemo, I would take a benedryl to help me sleep on the decadron... no problems.
Penny: I'm working on a t-shirt design... I'll have some samples up in a couple of days. Lots of sponge material out there... LOL
0 -
LOL TexasKaren...Im feeling you...that 36 hours...and then comes Sunday...waiting to see my Onco now..who's always late...can't wait to see the t-shirt! Something to look forward to.
0 -
Can't wait to see the tee shirt design. I just had cycle 2 day 8 wbc a little low so neupogen day 9,10,11. I am curious if anyone who gets halaven at dana farber if they are getting steroids or not. i do not get any antinaus with periotoneal mets and missing parts i can't risk obstruction. i asked for 6 mg decadron today so i will see what day 9-11 bring. i just hate the steroid high and crash at least it is only in the premed. i wish i had the 3600 today cost to have fun instead but there is no price tag on what time i get with my young adult children. maybe i will grow seaweed hair or a new sponge boob. decided i needed to get back in the fountain so will watch stewart and colbert everynight. we all need more laughter. penny sponge boob square?
0 -
Update:
Robin is having her 2nd Havalen treatment today. It is hard to tease out if she had any SE's with the 1st treatment because she was dealing with so may other issues. You might remember that she had to have a catheter placed in her left lung to drain fluid because the disease had increased in size and number in her left lung. They were having to drain her lung too many times and they decided that at catheter would be best. I am hoping it will be a temporary solution to a temporary problem.
Anyway, today is a visit with the Onc and the second treatment. Lets hope that the SE's are not so great. Poor thing has been through hell!
She is better now. It seems the 1st treatment, medrol dose pack, cough meds, and food has pushed her around a corner and she is feeling better.
I don't know y'all do it. I am the caregiver and it is tough on me, but I don't have cancer and the battles you wage to win the war on cancer is amazing. Stating that you guys are strong is so underwhelming...super women seems more appropriate.
0 -
Hi ya Sistas:) I will be starting Halaven next Thursday, January 19th doing the typical 21 day cycle. The treatment plan will be Halaven alone for chemo & Xgeva for monthly bone treatment. I so appreciate all of you who are posting your results, SE's, challenges, etc. I will do the same once I start this. Have been encouraged by positive results I have been hearing.
Since this is a chemo that's typically only offered to patients who have failed other multiple chemos, I thought I would list my prior treatment plans. I will list most recent treatment plan & work backwards from there. I will simply say that each of the previous treatment plans had some positive impact even if for a brief period of time. If anyone wants specifics about my individual results with any of these chemos, feel free to ask here or private message me.
Gemzar=chemo (Xgeva injection for monthly bone treatment)
Taxol with Avastin=chemo (Aredia for monthly bone treatment)
Xeloda= oral chemo with Faslodex (monthly hormonal injection) & Aredia (monthly IV bone treatment)
Arimidex= oral chemo, clinical trial (Zometa IV monthly bone treatment)
Virginia:)
0 -
Donese: I'm glad she's feeling better anyway. I don't think she'll have too many s/e's, especially as she is dealing with worse things than the constipation, taste buds, etc !!! My hat is off to her; and you too; do not ever feel that your role as caregiver is a light one.... you are our rocks and our ports in the storm, and we love you all.
Virginia: You sound very similar to me... weak ER+. My cancer came back in Nov/Dec 2010; and I've done 5 chemo's since then, Xeloda, Gemzar (no response) Navelbine (2 1/2 months before progression again); Avastin/Abraxane (almost 6 months, then prog), and now Halaven. (yes, on Xgeva too) It's a wild ride... but I'll keep on doing whatever they have to throw at me. I wish you great success on Sea Sponge Cancer Killer (!) and look forward to hearing your progress and any problems. Prayers for you too... always help!
AND NOW A SLIGHT DEVIATION FROM THIS THREAD: GO BRONCOS !!!! hahaha
0 -
Just had my 3rd treatment of Halven today. So far so good.
I'm interested in t-shirts--sounds like fun!
0 -
Best of luck to you in your new meds...............
0 -
Karen,
Thanks for the input about your past chemo history. It does sound like we have some things in common. I like your positive attitude and willingness to share your experiences here. We are all in this together and I'm so happy we have this particular thread to track Halaven results. I don't feel as anxious now about starting it this upcoming week since I know I have other Sistas whose brains I can pick.
And I'm up for a sea sponge t-shirt to celebrate Halaven's unique approach. Makes me think of SpongeBob, LOL Keep me posted on that. I'd wear a sea sponge t-shirt, especially to chemo and with a big ole beach hat for emphasis!
VA
0
