Halaven - Day 1
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Hi ladies. I start my first tx next Wednesday. You are all scaring the crap out of me. I can't imagine being more tired than I already am. Most of my life these days consists of either sleeping or feeling like resting. Any more tired and I'll never get up.
So far, my train ride into chemoland has been mostly smooth, and I'm hoping my luck continues with Halaven. I have my biotene at the ready and re-did my bedroom for all the sleep I'll need. Other than that, I hope it's gentle. I can't take prilosec as it can reactivate c-diff so if I get heartburn, I have to live with it. I suffer terribly with neupogen and all colony stimulating drugs and claritin is no help. I hope to God this doesn't mess with my white count too much because I just don't think I can take leukine/neupogen/neulasta again.
I'm hanging my hat on the fact that my onc thinks I'm strong enough for this one. I wanted to go back on gentle Abraxane but nope. It has done all it can do for me, which was pretty much nothing.
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Most of the time I feel pretty good other than the 20 hour nap in the middle. Since I woke up from my nap at 1pm today, I've been able to do lots. Grocery shopping and other errands. I'll be fine to go to my kids soccer games this weekend. I would say this is more like an isolated fatigue.
I know I've been REALLY lucky, but I've only had tingling fingertips and the long 20 hour nap. Can you take aloxi? That's the only thing I get before my meds. I told them I was done with steroids.0 -
Cool,
Are you taking probiotics? After reading your story, I added two differrent kinds, one by Schiff (Digestive Advantage) and one by Jarrow (name escaping me and too tired to go downstairs and check). It has seriously helped with my GERD and IBS, so much so, that I've stopped taking the proton pump inhibitor (in my case, Prilosec).
My intestines have never behaved this well. Granted, I'm getting weekly steroids, so that might be helping as well.
My Mom passed from C-Diff about two years into her bowel cancer "journey", "fight", whatever. There are no good words to describe the process. She picked it up after a resection. Her cancer was stable. She died of multi-system organ failure brought on by intestinal necrosis. So, I share your fear of C-Diff.
I wish I could wava a magic wand and make it all better for all of us. I'm having one of those days. Tired. Achy. Living in semi-squalor because I'm the clean one, and I'm not up to snuff lately.
Anyway, thread digression stopping now. Here's to hoping Halaven is the drug that gets you to NED. You are still low volume for mets, right? That's a good thing. Imaginary glass clink.
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I'm terribly sorry about your mother, Jennifer.
I stopped the probiotics but will start them up again in preparation for what's to come. My bowels have been normal for a few months and all that yeast in the Saccharomyces boulardii (the tested one against c-diff) is not really good for cancer patients either. But, I'll go back on it and Culterelle; there is some evidence that it can protect against c-diff reinfection. I also have vancomycin in my house. If they do an ablation on me, they will have to do it without preventative antibiotics and I just hope they are super-sterile. At least it's out-patient. (I think)
Fears of c-diff are well-founded. It was the worst thing I've ever been through or hope to go through. I hope my end days with cancer are a lot more gentle than the violence of my c-diff experience as my bowels started to die. It took me months to recover and it gave me a sad taste of how very sick a body can be.
I am not a big believer in supplements but I've also added - along with my calcium (my oncologist insists) some CoQ10 (my MUGA numbers dropped) and some Tumeric. Can't hurt, right?
The problem with cancer treatment, I've come to learn, is that it wears us out. I don't know if we die so much of cancer as just exhaustion. I can't imagine another chemo - my sixth. Or, another surgery. My body is so tired. I was so strong when I had my liver resection and now I'm just...not. The c-diff weakened me permanently and the chemos I've done since have made it worse.
I want to live, make no mistake. But, who know it would be so much damn work? I used to think "never give up" and my sister and friends all still think that way - keep going no matter what. But, I now understand how you can just get too exhausted and want to stop and let nature take its course. I am not there yet, but I understand it.
And yet, it's true. My tumor burden is low. I have one tumor in my liver, 3 cm now. Even the SUV is low so it's not very active. It's the treatment that's making me tired, not the cancer. I had a two month cancer break but it didn't give me my energy back. I need a year, but I will never get that.
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I'm so sorry to read that you have to go back to chemo....I was hoping you were free and Ned.
Good luck with the Halavan
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Yeah, its a little algorithm; do I want to continue treatment? yes. Well here are the options......
The only thing that makes it worthwhile is to focus on what I'm living for. what do I enjoy. How can I make my DH's life better? Can I heal other relationships? What can I think of immediately that gives me joy?
Otherwise I'm a machine.
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A machine. Interesting. You get up, mechanically, go to chemo, let them do to you what they will, oil and lube you? You have no power, just functioning?
It's an interesting analogy. The algorithm is true - a is treatment, b is no treatment. A is life, but a diminished one, B is a death.
A diminished life is still a good life. I am not going to take up jogging or bodybuilding but am able to read a good book, enjoy the laughter of my family, make my husband smile. I worry that I am a timebomb that may explode all over my family, leaving shranels in them, so I want to put that off as long as I can. A is the the only choice, but it isn't always the easy one.
Anyway, a lot of people seem to find Halaven easy. I did find Abraxane easy and hopefully I will have no major SEs from this one either. But if I do, I'll deal with it, won't I?
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Yeah, if i stayed on a bad chemo like Doxil, just to stay alive? Its something like a machine, like those bodies in Coma except you get to suffer. Just Call me Ms Sunshine.
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Yippeeee, MO gave me an extra week off! Now, how frequently she will do this is another story.
But this week I shall fully enjoy and use it to recharge.
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Hi Everyone, hope you don't mind I am sneaking over from Stage IV caregivers. My dear Sis was diagnosed unofficially in July with Stage IV breast with mets to the lung. They started her on Halaven, and she has done 3 cycles, then got pneumonia and is now about 2 weeks behind. From reading as much as I can it appears that she could go back on Halaven and be okay, it was decreasing tumor size. Her current Onc (he is on the precipuce of being fired) wants to start "palliative treatment", he will be so fired when she gets out of the hospital tomorrow. Am I right that some of you lovely ladies have been on Halaven for close to a year?
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i wish you good luck w the tx. may it kick butt
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<< on halaven since March w/ 6 week break for radiation. Dont know how long she will leave me on but we made amazing progress this year.
I would think it is early to go to palliative for your sister.......
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I am so upset. My moms markers have risen for the second time on hale van. Sloan never takes you off a drug unless the scans show progression and onc says too early to scan. It seems to me that if the markers are rising well thats just not good. She is on her fourth chemo and I'm scared for her. Liver numbers are still ok. Two of them are little above range but not bad. Has anyone had a great tumor marker surge before a downslide? I keep hearing about these great tumor kill offs that raise the markers but I've never seen it. I'm sorry I'm so down and pissed off. Ready to fire the onc, fire Sloan, fire everyone. I'm so tired of them not considering anything we suggest. I'm so tired of seeing mom suffer. I would rather suffer. Where are the drugs that kick ass? So sorry for the rant. Mary
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I did experience a tumor flare. Have her tumor markers always followed her cancer growths?
I hope for the best. I hope you can get her scans early. My onc said that insurance will only pay for an early scan if there is pain. Make sure she tells her onc every single SE she has. Maybe that will help convince your onc and insurance company to allow an earlier scan.0 -
I wonder if I"m having tumor flare. I can feel the tumor in my liver now - it hurts. Not badly or anything but I can feel it. I'm also really tired, not that I wasn't before. I guess the rumors are true. I am sleeping until noon these days. Gotta ask for ritalin!
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The doctors told me no one can feel a tumor underr 8 cm. I feel that statement is what we call a little white lie.
Sometimes, I've felt pain in my liver when the chemo was actually working, I think it was the chemo breaking up the tumors, not sure.
However, often, I've felt pain in my liver when the cancer is growing.
I'm pretty sure you are tired because you are on halavan
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Thanks ladies. I want to tell you all that each one of you is a Hero. You are batteling a foe you can't see, and the courage and determination, and encouragement I read here is amazing. I am awestruck. I am wondering if Sis is experiencing a tumor flare. Unfortunately she does not have tumor markers, so the only way to tell is by scans. We are to see a new onc tomorrow so hoping for the best. Prayer's to all of you, I keep asking God for a round of NED's for all!
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It is hard to speculate with each other from the direct source, much less from a third party. Jac, you may be causing yourself undue anxiety and suffering.
I have never had a tumor marker. I'm glad because it seems to upset peeps without definitive knowledge.
For me, I live between routine scans. I pursue new symptoms, go to specialists for treatment if the area of my body is in their domain, eg, pulmonary for cough, ortho for bone pain/tendonitis. Not because I expect a different dx (although they have definitively proven that very thing) but to keep the QOl at max.
It may be that the reason you see us as heroes is because we have become OUR OWN ADVOCATES. Not because we are brave but because we empower OURSELVES with our rights and that is powerful. These docs make a lot of money and are accountable to us.
Speech over.....
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Ann, I had pain in my liver while on Halaven. I think it was because the chemo was working. My last scan showed that to be true.
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Hurray! I am happy to read that Holdontohope! Good news, for sure.
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K-Lo, I'm enjoying my tumor markers. I can tell the chemo is still working for me and everything is in the normal range. It can give you really happy news too.
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Good to hear, Spam. I hope it works for those following them.
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Sorry if my "bully" came out with that rant. She's in there.......
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Thought this might be the time I made it to 'day 8' and a whole cycle of the stuff but neuts only 0.3 despite 3 filgrastim to boost marrow. Very frustrating as I think it's working as my ascites haven't come back yet. They have me 3 more filgrastim to take and review a week on Monday. Really don't want to stop unless I absolutely have to...
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Maybe it IS working, you may not need that much to knock the buggers dwon???
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I had halaven #2 yesterday. I am really not feeling well. I've had stomach cramps a lot of the evening and I woke up in the middle of the night with terrible acid reflex. It had all come up and burned my throat and mouth and that's how I woke up. I can't take most acid medications because of c-diff so I took a tums (that had expired in 2004, buying new today). I slept until 12:00 today and have had stomach cramps off and on.
She gave it to me as an infusion instead of a bolus. Do you think that could be the difference? It was a short infusion but I didn't really pay attention. I thought it was pre-meds in the bag, but then she said she gave it as an infusion, that some nurses gave it as a drip and some as a push, and I was all done. I thought it was supposed to be push but I don't know if it matters, or if it could have anything to do with side effects.
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Do you get aloxi in your premeds? Maybe you need a bag of fluids to calm your nausea. Do you get steroids in your premeds?
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I get mine as an infusion over 10-15 mins but nurse stays will me to check things ok with my vein (no port). I did have really bad indigestion (of the 'crap is this my heart' type) a few weeks ago and wind - joy - and they settled with Gaviscon and Windease (does what it says on the tin!) Overall, I've felt pretty lousy on the drug and see it as being as bad for me as Taxotere. However the fluid has not built up in my abdomen so far (though think it might since I missed day 8) and have appointment to see onc on day 15 so they might give me more then.
One of the big problems I have had is ulcers along the side of my tongue which make it difficult to eat and I have tried avery damn liquid and ointment etc for them. Also am producing less saliva so have to take a bottle of water to bed with me or else my mouth is too dry to open in the am.
Hope things settle down for you soon Ann
Lx
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Yes, I get Aloxi and Decadron. I guess these are just the SEs I have to deal with. Slept until 11:30 today. No major heartburn last night but I took some (fresh, new) Tums right before bed.
Oh well.
I hope my doctor gives me the ritalin and it works for me. Sleeping all the time means I'm missing what is left of my life.
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The Ritilan does nothing for for the fatigue on day three after the halaven. I don't have any sores in my mouth. I use baking soda toothpaste and crest advanced mouthwash. I don't know if that prevents them or I'm just lucky. Maybe it's all the coke I drink:). I take Prilosec for my heartburn.
I hope things get better for you guys. I only have 2 SE. Fatigue and my fingertips are a little numb. My scans are good and my tumor markers and liver enzymes are all in the normal range. I hope this chemo continues to work for me.
My onc has noticed that Halaven seems to work better if you are under 50 or 60.0
