Halaven - Day 1
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Spam-a-lot, The very first cycle knocked my neutrophils way down. They cut the dose by 10% and its been up or just making the cut since then. Suddenly she is cutting again, by 15%!
She never really answered whether the SE's are cumulative.
Made meatballs w spaghetti tonight as a red kind of valentine gift. Son and GD came over. She just couldnt be cuter. I'm teaching her to call me Gamma. Pretty cool, right?
Yall have numbness?
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ME AGAIN!
Had halaven Tuesday, today worst nausea (7/10). Do y'all hesitate to take Zofran b/c of constipation? Frequently, Nausea is telling me that I haven't eaten in a while. But I had a big lunch, followed by chocolates (Rolos, mm) and diet coke (my favorite energizer) and didn't really want to eat. Zofran helped.
Kinda wished I could hook up an IV and run fluids in. They should let us do that! Water, yuck!
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I have so many problems with my blood counts. They have dropped the dose down to 75% right now and hopefully that will help. It kilss all my counts. WBC, RBC and platelets. Got one dose then had to have the transfusion. then a reduced dose and we will see what Tues brings. Otherwise no side effects and my hair is growing back!!!!
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Hey, Kimberly, congrats on hair! Why is it that some people's counts go so whacky? I've known several people who got called in emergently by their docs. I wonder if treating us by weight is a factor? Some people are heavy but their frames are small.
K
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Heavenlies,
hows it going? Kimberly, are your counts more stable?
I guess Im at 75% now too. yet, im getting skin and delicate tissue sores...??? Whats with that after all this time (1 year on H) Not as bad as Xeloda or the drug whose name must not be said (D-X-l)
Anyone have neuropathy? Past few weeks my toes and fingers are like your foot when you sit on it... kinda dumb. D-numb.
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Numbness is an sE. I've had random cramps in my foot and can see my toes curling literally. Random. It happens the day after treatment and then goes away. Quite painful but only lasts for about a minute ir so at a time. I'm now on cycle 6. My registrar told me they only give 6 cycles SO i went to see my oncologist prepared to do battle citing my understanding that in the us they give it until it's no longer effective. My onc grinned at me and said I was the first if his 6 patients that had tried the drug to do well on it. And then said if everything was good at next examination in three weeks time he would sign off on another four! It's a new thing in the uk. I'm so glad of this thread as it prepared me for what I could expect since theres very little info in the uk. My hair thinned but is still there. I get steroids and odansetron in pre med. Odansetron causes constipation so I take a docsulate at night for a couple of days after treatment and it sorts itself out. I also try to eat foods to help things along a bit. I made a lovely apple and rhubarb crumble yesterday. Yum! Also, a couple of dates every now and then help lots. I started eating them instead of eating sweets cos I'm far too over weight now due to stuffing my face and then not being able to exercise too much due to hip.
X Sarah0 -
Hey Sarah, can you ship rhubarb crumble to the US ?
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Sooo glad your onc is aware that this drug is used for long periods. I'm at 12 months. They don't give steroids here, maybe your team will back off. I'm rarely nauseated and then it is like 4/10.
For severe reactions ( eg low blood counts), they tend to decrease dosage a little. Find your perfect dosage and you may be able to stay Halavenly for a good while.
Hugs. Kathy0 -
My onc is pretty hot stuff. Cutting edge of research etc. He's biopsied me twice and I am waiting for another appt for one as he wants to see if my status has changed as he has me in mind for a trial targeted therapy treatment and wants everything in place in plenty of time. I'm very fortunate. I'm on top dose at the moment. I'm weaning myself of the steroid dose as I become more confident with this drug. I hate feeling sick. Steroids are ok at the moment because they ease the pain in my hip a bit and also sorted out blocked saliva gland this treatment. So it's been a bit handy!
X Sarah0 -
Hey all. The counts are at least where I can get chemo, but still low. Hoping that with getting this it will kick the cancer out of the bone marrow and up my counts!
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Yeah, loving momma! Glad you are able to get your treatments. Let's kick that treatment to the ground and don't let it back up again.
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I started my 2nd cycle of halaven today. The first cycle I experienced nausea, neuropthy, dry heaves 3 days after treatment, hair loss, extreme fatigue. My counts have been low but now low enough for the shots but they figure I will have start them soon. I hate those shots. They make my joints ache so bad. Love and Blessings to all.
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Butterfly, Did they turn the dose down???? I read where the first cycle hits you hardest and thats when they determine you may need a ~ 10% lower dosage. Ill try to find the article.
Lovin..... hoping with you. Its been a great drug for me.
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BUMP
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I finished my 5th round on Feb 27th. Within about 6 hrs I started to feel bad and I felt bad for the next week. I've never had a chemo treatment hit me that quickly. I had to go in for a Neulasta shot the next day and barely had the strength to go in. Main problem was fatigue plus I ran a low-grade fever. Yesterday I started feeling better and today I felt pretty good. My WBC's were pretty low, so I'm guessing that's why this treatment hit me so hard. My other treatments have been pretty easy.
Now for the good news! I had a CT scan done on Feb 19th. It showed my lung mets are stable and so are the bone mets that are visible on the chest CT. Before and after the last treatment, I've felt better than I have in months. I'm breathing better, I'm gaining a little weight and my skin mets are continuing to shrink.
I posted my scan results in another thread, but I wanted to include it in this thread, too.
Looks like I've finally found a drug that is going to work for me. Just hope the next treatment won't be so hard on me.
Jan
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Butterfly, do they give you premeds before you get your Halaven treatment? I get a drip of steroids (Decadron) and Zofran.
Jan
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Jan, i agree that this is one of our better drugs. Did they turn YOUR dose down? Sorry for the misery..... happy for the stability!
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re-bump
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K-Lo, no, they haven't lowered my dose. If I have another treatment that hits me as hard as the last one did, I'm going to talk to my onc about lowering it.
Jan
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Halaven has been such an easy chemo for me until my last two treatments. During some of them I couldn't even tell I had taken anything. That changed after the treatment I received on Feb 27 (treatment 2 of round 5). Within 8 hrs after I got the treatment I started feeling bad. I've never had a chemo treatment hit me that quickly. I was extremely tired, weak and wobbly on my feet. This lasted all week. The following week was my "rest week" so I didn't have a treatment. I went in on March 13 for treatment 1 of round 6 fully expecting at least one of my counts to be too low to get the treatment, but instead my counts were pretty good, so I got it. My hemoglobin was still low (9.4) but was higher than it's been in a while. Apparently I'm experiencing cumulative fatigue. I haven't felt any worse since getting the last treatment, but I'm still very tired.
My latest tumor markers were 186 (down 24 points from 210), so it's still working. It's disappointing, tho, to go from feeling so good to being so fatigued.
Jan
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Jan
I have had the same experience. The fatigue with Halaven is impressive.
What is odd is the inconsistency. I can't really predict the 'fatigue' day and sometimes nausea crops up unexpectedly.
Has anyone else had this roller coaster experience?
In the scheme of things, it has been one of the easier drugs and the push is so fast. I like the short visits.
I had a good 6 month run but last PET showed slight progression. Probably will move to Kadcyla.
Hope you get a very long Halaven run.0 -
My counts still are low but ok to take. Had a circulating tumor cell test yesterday to see if this chemo is working. It had better be. Need it to work.
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Bump for newbie Emily.
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Bumb.
I made the mistake of playing with my hair until the point I had to shave it off. Within 3 months, it started to grow back.0 -
Welcome, Emily. Hope H is as good to you as it has been to me. Many of us have thinned hair, but are able to fix it to hide patches.
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Any tips on dealing with the fatigue? Foods, supplements, etc?
I am tired of being tired.
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Have you tried Ritilan?
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I think I have heard of that being given for this. Have you taken it? How do you feel?
Do you know if the fatigue is cumulative? Gets worse over the cycles?
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Hellooooooo anyone out there? This board has been "dormant" for awhile but I just started Halaven and would like to connect with others who have been on it or are on it!!! I hope someone sees this!!!
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hi filmsical. I was only on Halaven for four months. Once I got over the initial physical shock of being poisoned all the time again, it was a very tolerable treatment. The fatigue was a lot at times, but I was doing rads at the same time too. I hope you have good results and minimal SEs!
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I have had 2 cycles of halavan, I feel pretty good on it but worry about neuropathy. Taking vit b complex it only one a day becsuse it upsets my stomach
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