Halaven - Day 1
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Thanks Mam. I will definitely be asking my onc. about the pain with eating. I have managed to avoid any further pain by eating a lot less and much slower. If it didn't let up, I would have definitely have gotten a hold of someone STAT! Luckily it faded to normal in a little over an hour.
I would like to believe that the Halaven was keeping my liver busy, killing the liver tumor that lives there. Not giving much thought to the food that wanted to be processed. So the food got ignored because the Halaven was doing such a great job of destroying the tumor. That is what I was trying to focus on during the pain. It could be true, right? 👍🏼😊
--Liz
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Now, that's a positive mental attitude, if ever I saw one! Another thought, oncology gives me an rx for omeprazole with any IV chemo. I forget to take it, but it is totally helpful for that raw, yucky gut thing that happens sometimes. Lately I will use one the day after, and maybe one for a couple other days in the first week. Its for heartburn, which before ca. tx, I never had.
Glad you feel better and have figured out a way to manage.
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Mam. I will definitely try the Omeprazole. Thank you for the suggestion. Another plus for taking it (Omeprazole) - it gives me diarrhea. That is good because the anti nausea drug they give me with the Halaven gives me severe constipation. Tried all sorts of natural remedies this week, (prunes, apples) then colase, then a couple other things that I won't mention. I feel like I am already in the "too much information" zone. 😊 Finally, magnesium citrate did the trick. Omeprazole may keep things "going" for my next Halaven dose. Less discomfort too. Prunes and apples are still on the menu, don't want to give up healthy fiber. Has anyone else had this problem. And if so, solutions?
Sorry if too detailed, but I am guessing this isn't the first time this treatment has caused such problematic side effects. Let me know though, and I will be happy to be a little less specific in my descriptions. 😊👍🏼
As always, thanks for reading. ❤️
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Yes, that is really common with these chemos, playing side effect roulette. I get confused as to when to take what, until I am in a few rounds. I also have gotten more sensitive to digestive system effects as I work my way through the various chemos. The big D, the big C, and such, are big concerns around here. Best of luck with it all.
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I agree, MameMe, about knowing when to take what.
Kriet, be on guard that digestive changes may happen throughout your cycle. I start out only a bit constipated after an infusion (not near the extent your dealing with) but usually have more of the big D than anything. I don't have it too bad, but I do notice it.
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Good advice Southernsurvivor. I will definitely be closely monitoring my symptoms. Thanks guys for all your advice. ❤️. Fingers crossed!
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Hi all. Just an update. Started Havalen Friday. They didn’t feel I needed a port. Pre- med was compazine - anti-nausea. Am also cold capping - which was cold and uncomfortable - have my doubts it will work anyway but gonna try. SE- some nausea, no appetite, headache, tired...but also waiting for the other shoe to fall. Worried about neutropenia because that was pretty bad for me during AC. Second shot/infusion this Friday and the plan is for a total of 8 every week for two weeks and then off one week!Hope everyone is doing well and gets excellent results with this treatment!!
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Good morning ann1999. The first dose is always seems to be the worst, untill you know how you will react.
Here's to the next few being a lot easier. ❤️
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Hi kriet33. Thanks for the positive thoughts. Here’s to long and tolerable treatment for everyone. Am going to see if I can get a port...my poor arm is black and blue- and sore- they say I’m a “poor stick”. Funny - thought maybe they need more practice (and not on me)LOL 😣. Oh well.
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ann - Yes. Definitely get a port. Sooooo much easier and less painful.
Just got my second dose of Halaven yesterday. The SEs are better already. I spent three hours eating dinner slowly last night, felt a little quesy, but NO HORRIBLE PAIN this time! It might have been the anti nausea med, Aloxi. I got it the first time, but I switched back to ondansatron yesterday, since they both cause constipation anyway ( I was trying Aloxi in an attempt to avoid the constpation - but there are meds to fix that too, and the ondansatron is cheaper -$10 vs $50). Plus I am taking it in pill form, so I have more control over the dosage. The Aloxi was a one time iv dose and lasted three days.
Also, Since I had a couple of bad headaches last time, I took a precautionary dose of naproxen before anything had a chance to kick in, so all I am dealing with today is a bit of a stretched feeling. A little weak, but not too bad.
I did learn one thing this morning at 2 a.m. I need to get my future infusions in the morning, as early as possible. Yesterday's dose was at 2 p.m. ....the steroid they give you is not indusive to sleeping. I fell asleep O.K., but was up at 2 a.m. ☹️
Hey, at least I got to work early! 😁Hope everyone is having a good day. Or at least a tolerable one. 😊
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kriet-33- glad your day went better yesterday. My 2nd injection is tomorrow. I am going to switch from compazine to something else too. I didn’t have too much pain with eating or nausea but had a lot of anxiety/jitteriness for at least the first three days after- pretty yucky feeling and I’m blaming the compazine. I have some headaches and a very dry mouth which is really annoying. Hard to even swallow food. You are working? That is amazing!
Hope everyone is hanging in there.
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I had my 1st infusion of my 16th cycle today. I'm getting tired of chemo! It certainly can be worse, as I know, but my energy has been low lately. My bloodwork is good. I think it has to do with too much stress and trying to do too much.
Today I start having family in for my younger son's high school graduation Sat night. 9 people in my house for a week. It's a lot when you are on chemo. I'm used to 3 of us as my older son has been away at college. Now he's home with 5 family members of my DH coming too. My parents are in town now too but staying with my sister. In addition, on Tuesday it's both my birthday and my in-laws 65th wedding anniversary, so we will be celebrating then. Wednesday is wedding dress shopping for my niece with all the girls. They leave Thursday morning and then I have chemo at Noon that day. Lots of activity!
I'm praying for strength to get through and enjoy these moments!
Thinking of all of you tonight!
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Hi Everyone!!
Well...started round 6 Tuesday, uneventful, and still cold capping. Although, I almost feel like I can stop. I have new growth in my thin patches and haven't had shedding since round two.... Any thoughts? Anyone else notice that it seems to be an initial reaction? Southernsurvivor thoughts?
My tumor markers are playing with my head. We check them at the end of every cycle..last cycle up 6... cycle before down 9... cycle before that up 11... what the heck. My Onc says that is stable...I am losing sleep. This disease is unfair. It is all I can do to not have mental breakdowns on the daily.
Hope you all are feeling well. Hugs to all💕
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Southernmost- wow 16th cycle- amazing! I can understand it is getting old -but what can we do right? This drug is kicking my butt with nausea, fatigue, bone pain, dry mouth etc. I don’t think I could take all that on right now. I hope your days are fun and memorable though- sending virtual energy!!!
Teachermom2- you are ahead of me by a few. Sorry to hear your stress about the tumor markers. I freaked out when I learned mine had gone up by 150 at the time of my met DX. My new oncologist doesn’t do tumor markers. I have scanxiety enough to put me over the edge every three months. Been doing this for 18 or so years and boy it doesn’t seem to get any easier.
I’m sitting in the chemo chair right now for my second shot. No go on the port. A really good nurse got a vein on the first try so that went better. cold cappin. Head is freezing but hope it will be worth it. Shedded a little last week but still have most of what was left after I/F. Looking forward to two weeks off
Keeping everyone in my thoughts and prayers.
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Hi all. Had my 3rd dose (start of second cycle) yesterday. Pretty uneventful. Had seen the PA just before and due to having a lot of SE she decreased the dose by 20%. She said the efficacy would be the same- guess I have to believe her. Anyone know different? Next scan won’t be till August- sure hate waiting to see if this is working. Still cold capping but shedding a lot so may need to make a wig purchase soon. Thinking of everyone!
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HI Ann, yes on Halaven I needed to buy a wig. Halaven worked though, it made the metastases in my bones and lymph nodes go away. Its a pretty wonderful chemo. Get the best wig you can afford, I say.
Best of luck !
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Teachermom2 - great that you have been cold capping all this time. I agree with you - my shedding was at the beginning and not much since, although I didn’t do cold capping so not sure if you stopped what would happen. I have about 20-30% of my hair left. The other 70-80% of hair follicles are gone. The hair remaining grows, which is actually annoying, as I have to keep shaving it shorter to wear the wig without it slipping. My tumor markers are similar to yours the last few cycles. Up 24, down 5, down 8, and up 5.
Ann - I would think that the 20% dose reduction would still work just as well. I’ve seen many others do this type of dose reduction on other chemos and it still worked with less SEs. Keep it up - you can do this! I have a wig too, but I didn’t cold-cap either.
Waving hello, amarantha! Are you still on Halaven?
Kriet - how are you feeling? Please update us. 💕
I got busy for awhile these past 2 weeks but missing hearing from everyone. Hope y’all are hanging in there and that Halaven is working! Take care all and have a wonderful Sunday with rest and relaxation included. 😀
❤️ Southern
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Hi all: My status is below. I also posted this in the peritoneal carcinomatosis thread. I appreciate any feedback you have. Continue to hang in there, gals
Well, I started my 17th cycle of Halaven. I've been on this chemo since 7/20/17, so 11 months. Today my tumor marker went up 32 points - I'm not a happy camper. We will do this one more 3 week cycle and reassess & maybe do a scan, although who knows what that will show! Disappointed but not panicking yet. My chemo choices are dwindling and none are "easy" that I have left, which includes Doxil, CMF, Taxotere, AC (since I haven't had the lifetime yet), and Afinitor. I have had
- AC, Taxol - first diagnosis in 2007
For Stage IV, diagnosed in Jan 2014 (belly mets officially diagnosed in May 2014)
-Faslodex
-Abraxane
-Gemzar and carboplatin
-Xeloda
- Ibrance with Letrozole
- Ibrance with Faslodex
- Halaven
I'm exhausted. Any thoughts as my next great chemo treatment?
Thanks for letting me pick your brain. 💕
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Hi Southernsurvivor, can you expand on what you mean by belly mets? I'm starting halaven on Monday for a new diagnosis of mets in ascitic fluid in my abdomen. Or something like that, I don't fully understand it yet and Ive never come across anyone who has had this.
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Hi jillts, first, I’m very sorry you have to deal with this. I have found Halaven to be fairly tolerable for me and much better than some chemos I’ve been on.
I will say my mets are hard to see on any scan, just see a lot of thickening, but my duodenum has been completely obstructed, and is 100% blocked with tissue growth since 2014. I have ILC (invasive lobular cancer,) so it’s infiltrated through the tissue. Mets we’re finally found in the abdominal wall by Mayo Clinic in MN. Was on a feeding tube from Aug 2014 through April 2015 in order to eat and drink. The thought was by all the MOs that chemo while on the feeding tube would shrink the tissue in the duodenum. That never happened. I had major stomach surgery in March 2015 to move my intestines from right side off the duodenum to left side directly off the stomach to allow me to eat and drink again. Feeding tube was removed in April 2015. My case is very unusual. That surgery definitely saved my life, as my surgeon said I was quite close to death. Now I continue to battle the cancer, of which none could be removed during my surgery due to the fact it was so invasive and embedded in the tissue - not actual tumors.
I have not had a lot of ascites and have never had to drain them, but several ladies here have. I know Navelbine helped Cathy’s ascites (user name retrocath) and Halaven actually cleared up the small amount of ascites that was seen on my scan before I started Halaven in July 2017.
Please join the “Peritoneal carcinomatosis” thread on this forum to give you more information about peritoneal area (belly) metastasis and you will see several of us do have this, although it is quite rare. You can read the most recent several pages of that thread to give you more details too.
I wish you the best on Halaven and let me know if you have additional questions.
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HI Southern Survivor !
Jayzus, I just read your story. Holy Moly ! You are a trouper !!
They took me off Halaven because the right side was progressing during it, however it did a good job of beating back the bone and lymph node mets and the skin on the left side. The right breast and left ex-breast have different profiles and do not respond to the same things ! so now we are trying to cool the cancer in the right breast with daily radiation, and weekly Cisplatin, hoping to get to a place where a palliative mastectomy will be safe. However now the left side is marching forward, with skin mets moving down the abdomen. I guess skin mets are not that concerning, won't kill me, but maybe are a screen for worse ? Not sure whether we are going to go through with the whole of the planned five weeks of Cisplatin and rads now because the radiation doctor was worried. Anyhow, that's more than you wanted to know I'm sure ! I'm still feeling pretty upbeat most of the time, although yesterday was a bit of a meltdown. Argh. I'm happy to see all my old friends here on this thread, quite an active thread, isn't it. Okay, well good luck ladies !
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Oh Amarantha - this stupid cancer has a mind of its own! Sorry you are going through all this - it certainly can be overwhelming. I pray this radiation and Cisplatin works for you. Although you are leaving Halaven, please come back and update us - we care about you!
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Oh my goodness, southernsurvivor, you have been through it! And I apologize that my question was so direct and didn't even acknowledge your post at all.
I wish I had some advice for you. I have done Afinitor and had to get off of it because, perhaps by coincidence and perhaps not, I developed blood clots and pneumonia while on it but even worse for me was the effect it had on my legs. I had a terrible time walking while on it, with pain/weakness in my thighs. It could have been the aromasin I took with it, not sure. But that said, I never found ANYONE who had leg issues like I did and other than those things I mentioned (ha) I felt fine on it. I just wish I would have been on it longer to know if it was working.I wish you luck with your decision and thanks for the info on the other thead, I will check it out.
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Hi all - I started my 18th cycle of Halaven yesterday. MO and I are going to see how my TMs do after this cycle then reassess.
Need to get some things done today, as then the next two days I’ll be in bed or on the couch. Hate days 3 and 4.
All these chemos have crappy side effects. Thanks, jillts, for the side effect info on Afinitor. That doesn’t sound fun AT ALL. Weird how we all experience different things, although none are very good. I told my PA last time that I don’t feel like I have any “easy” chemos/treatments left.
How’s everyone else doing? Who is still cold capping? I just had my sister shave my head down to 1/4 inch. The follicles that I have left were getting too long.
Hope y’all are hanging in there. 💕💕💕
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18 cycles Southernsurvivor is absolutely inspiring! I sure can relate to hating days 3-4 but I’m more like hating 1-7😣 but yet very grateful for the treatment. The dose reduction helped though so SE aren’t so severe - little bit better QOL. Cold caping didn’t work. I have about 10% maybe little more of shoulder length hair mostly in the back but can clearly see the scalp...grrr. Bought a wig. It’s interesting how u get to have TMs done - my MO won’t do them so I have to wait till August for next scan. I’m on my week off before I start cycle 3. Here’s to stable TMs and doable treatments
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Hi Ann - happy to hear from you! Happy I'm still on Halaven as honestly, it's been easier (not easy for sure, but easier) for me then many other chemos. It's one of the few that hasn't given me nausea, which is wonderful when you have stomach mets. Glad your dose reduction helped and your MO was diligent in knowing QOL is key when we are talking long-term treatment. My mets in the stomach are difficult to see sometimes on scans but luckily, I'm one of those individuals where my TMs, since original diagnosis 11 years ago, have been a great predictor of progression and indicator of how my cancer is doing. Progression definitely shows up in TMs before it does on a CT scan.
Sorry the cold capping didn't work. Once I was diagnosed Stage IV, I decided I didn't want to bother (or pay the hefty price) of constantly cold capping with most every treatment. Plus, my hair is naturally thin, so pretty much any loss at all would mean needing a cap or wig anyway. My hair grew back with Xeloda but then I promptly lost it with Halaven. I will say it sucks not to have hair. I've lost my hair 3 times now. 😡
Enjoy the day all! 💕
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Jilts, I also got pneumonia and terrible leg problems on Afinitor/Aromasine. My left leg swoll up as if I had a heart problem, which I don't. And this summer, heat and all, not being on Afinitor, my legs are perfectly fine. I must say, I'm thinking Afinitor is a tough tough drug. Very glad not to be on it. Halaven was a walk in the park in comparison, I think. Once this stint with Cisplatin and radiation is done, I would not be surprised if we go back to Halaven.But yes, it did a number on my hair.
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Amarantha,
I just progressed on Afinitor after 9 1/2 weeks (actually I progressed the entire time on it) and in the last 3 weeks my left leg swelled up. Did your swelling go away? Mine is terribly painful. Also ended up with lung problems.
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Amarantha,
I just progressed on Afinitor after 9 1/2 weeks (actually I progressed the entire time on it) and in the last 3 weeks my left leg swelled up. Did your swelling go away? Mine is terribly painful. Also ended up with lung problems.
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Morning All!
I hope everyone is feeling well. I just completed round nine this week...side effects are still just a little fatigue, so I hope I can ride this train a while longer, but my tumor markers are playing games. Last check they were up 2...which my MO didn’t blink at..however they were up 5 the round before. We will check this week with blood work and see how they are. If they continue on the upswing,we will scan,but MO say she they seem to be hovering at stable. I would feel better if they were down 2, hell, I’d even settle for down 1!!!
I am still cold capping, and hair is actually starting to fill in, I have been contemplating stopping. It would seem it’s initial shedding and then it stops for all...so I may roll the dice soon, I will keep you posted.
Have a great weekend everyone!
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