Halaven - Day 1
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Pajim I would definitely want to know what it is! Not panicking is easier said than done. In this crazy cancer world we live in it’s hard to pass over anything unusual as being nothing to worry about. I worry about everything but I just don’t tell anyone. Making doctors work is not a bad thing - keeps them thinking! 🤔 I am glad it’s all okay.
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I second Wandering, pajim, glad it's ok (ish). We walk such a weird path, it's impossible to know what's panic-worthy and what isn't. And what with everything we go through, our defenses are always turned up to 10.
Right now I'm really struggling with my weight. I continue to lose, just a little bit a week, but still...my MO says she'll dose-reduce if necessary. I'm considering it, but struggling with the "what if's". I haven't scanned yet on this protocol, so I don't even know if it's working.
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Jaylea are you due for a scan soon? My MO gave me a 25% reduction for neuropathy and as far as I can tell it’s still working. I have a CT scan coming up and I’m hoping it’s still working for me. Doing away with the nivestym shots and steroids makes this much more tolerable so I’m not so anxious to change to something else. I’ve never struggled with losing weight only gaining so I’m not much help there unless you would like to come over for some biscuits and gravy and blueberry cream pie. Sourdough bread. Chocolate chip cookies. 🍪🥧
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Thanks, Wandering, you just made my decision a little easier! I'll pop over shortly for some pie and a cup of tea. Scans will be in September. Like you, I need to get as much time out of this tx as possible - options are narrow after this. When are your scans? I'll be praying they offer good news.
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Jaylea, I feel like I eat like a pig but I'm still dropping weight. I've lost 20 pounds since January 1. I could lose another 10 before people really start to notice but then. . .
I haven't gone on a campaign to eat more, but I don't worry about what I eat. If I want dessert, I eat dessert. Is your problem you don't feel like eating? Or things don't taste right? [I get both of those for a few days a cycle]
Wanderingneedle, can I come over too? Chocolate chip are my favorite.
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I’m spending a week in Texas then having a CT scan on Monday when I get back. From the frying pan and into the fire!
I love making cookies with the granddaughters. We use special dark chocolate chips and mini m&m’s! It’s easy enough to keep their attention and they like to eat what they make. Sometimes I will freeze some dough so we can make a dozen cookies in a flash!
I’ve lost 70 pounds since going keto in January last year but not dropping any pounds on Halaven. My taste/appetite are different.
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Pajim, certain days of the cycle I have total and complete lack of appetite. Foods do taste different, but I can usually work around that. I try to eat really moist things, as my mouth and throat are often dry. Compound that with no energy to cook. DH does his best, but cooking was never his thing. So, lots of smoothies, sandwiches, and frozen/takeout. Like you, I don't really worry about what I'm eating. I don't even pretend to get 5 servings of fruits/veg a day. But I do worry for my DH. This kind of eating is not great for him, but I've had to let that one go...
Wandering, what part of Texas? I have loved ones in Houston. Hope you have a marvelous time!
Mike, hope things are going ok in your corner.
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Jaylea my dad lives near Tyler in east Texas. I grew up north of Dallas and left as a teenager. He is from Oklahoma and moved here after retiring. I love to sit on the porch and watch the deer come in and the birds and squirrels.
I’m not much of a cook anymore but will make some things in bulk for the freezer like meatballs and lasagna and soup/stew. I will cook up some chicken breast and cut it up and freeze it for salads. I will use frozen veggies for stir fry. Throw a roast in the crockpot. My husband works a swing schedule and isn’t home for dinner 5 days a week but I cook for our son since it’s as much trouble to help him follow a recipe as to cook myself. Sometimes I have a quesadilla - easy dinner! My husband likes to grill and has a new smoker so does some cooking on his days off. Except for baking - I do that. Some days I have to make myself eat - I have the granddaughters most days and need the energy. And vitamins.
I know my taste and appetite have changed. My dad’s plum jam, pear preserves and chow chow all still taste good!
Everyone have a great weekend!
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This is what I watch with my morning coffee.
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I'm writing this in my wife's hospital room. During in her week off from Halaven she got a bad uniary tract infection. With a bunch of antibiotics she's manager to get ride of the infection. However her ANC is low, less than 300 at times, and they won't release her until it's 1000+. She's due to start her next chemo cycle this week. Big mess. Sorry for spelling and other mistakes because I'm writing this on a tablet.
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Mike I hope things are better today. I think the nights are hardest when you’re waiting something out. ❤️ Please let her know we’re thinking about both of you.
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Thanks Wanderingneedle. Today's ANC is, drum roll please, 1610!
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AWESOME!🙌🏻🙌🏻
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That's great Mike! homeward bound?
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Great news, Mike, I hope your next post is made from home. Best wishes that your wife is comfortable and gaining strength every day.
Wandering, what a lovely way to start the day. One of my favorite Christmas decorations is a rustic scroll with a quote that reads "One touch of nature makes the whole world kin".
I talked to my MO and we decided to go for a dose reduction next cycle. She says if I do really well, we can escalate the dose from there.
Making the most of my week off treatment. Long drives with DH and visits with girlfriends and family on the books - yahoo!
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Back home now. Here ANC was 1610 so she was released. However, the antibiotics she has to take have given her a bad case of the big D's.
Chemo scheduled for tomorrow (maybe) if the Big D lets her. She's taking Imodium to lessen the effects of the antibiotics. With antibiotics you have to take every last pill or otherwise it doesn't work. Someone please explain that to me.
Also, wife's MO is going for a dose reduction to lessen side effects. She's already at 80% now. He doesn't want to go down too far but to get to that perfect balance point. Effective but not disabling SE's.
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Mike, there's actually a lot of controversy over how much antibiotics people need to take. And in some cases it's been proven that a shorter course is OK. And in some cases it's been proven that the longer course is better.
Docs simply don't know so they prescribe a lot.
The original theory was you needed to keep the blood levels up for longer so they would kill all the bacteria. That if you stopped too soon you were only going to kill the weak bacteria and the strong ones would (a) continue to reproduce and (b) become resistant. And in a lot of cases that is true. Think tuberculosis. But it's not true for all infections.
Probably more information than you wanted -- I know your question was out of frustration. Since I find Halaven major league constipating, possibly the chemo would help your wife's diarrhea?
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Aw, Mike;
Sorry to hear she's on antibiotics due to that UTI. At least, she's home. What a difference that makes.
You know you can actually double the dose of Imodium, right? What the bottle says is often insufficient dosing and you can actually take more than what it says. Ask her Docs if you're uncertain how much is allowed, or possibly it's working? I'm starting to get to be an expert on diarrhea (not really, LOL!). But my recent Xeloda (Capecitabine) fiasco taught me more about Imodium then most of us want to know.
And I'm betting Pajim is right about getting back on the Halaven. It IS supposed to constipate.
Folks, I saw an Integrative Onc on Friday (8/9). While he wasn't someone I will switch to (I merely wanted a 2nd opinion), he DID tell me that my cancer is not "progressing" as per the RECIST measurements. I had never heard of RECIST so I had to research it. I still want to think about all the stuff he said because Fox Chase Cancer Ctr. is more aggressively whacking at my cancer. But he thought a break was in order. When I discussed all of this with my husband later on, he suggested I get my next scan, THEN decide if I needed Halaven. In other words, don't start it on 8/20, but 3 weeks later. He suggested that perhaps the Xeloda actually did some good in spite of all the damage it did. I have a call in to my PA Zach to see what he thinks. If I hold off on the Halaven (presently sch for next Tuesday, the 20th), I would just get the Herceptin/Perjeta biotherapies as maintenance, waiting another 3 weeks. My husband may be wrong. But I can't BELIEVE how differently I feel being off chemo since June but just on Herceptin & Perjeta.
Isn't it sometimes alright to just do the maintenance drugs for a while if you don't see serious progression?
Any advice would be welcome.
Miriam
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Ah, Miriam, the break dilemma. When I failed taxol/gemzar and knew Halaven was coming, I asked for and MO agreed to a two week delay. I have to say, it wasn't that enjoyable. Firstly, I don't think it was long enough for me to feel all that great. Second, every pain I encountered I was sure was progression. So in my case maybe not the best choice. However, if you're feeling good, no signs of progression, and with the doctors blessing, I say take that time, fill it with good times, and enjoy it. Let us know which way you go.
I'm really struggling with neuropathy lately. Fine hand coordination like typing and writing are challenging. I get my first dose-reduced tx today. And I will be vigilant about icing at treatment. Hopefully I can nip this in the bud and maybe reverse some damage.
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Miriam, I've been taking breaks in the middle! I took an extra week off in June and will be doing another in September, My MO says he has someone on Halaven one week on, one week off.
Another thing to think about -- most clinical trials require a 14 or 28 day wash-out period. So they want a break before you start a new drug, LOL.
RECIST is what trials use to measure progression. Which is why they don't want to take women with bone mets only -- you can't measure those by RECIST criteria.
Here's the last thing to think about. You're in charge. Not your doctor. You. If you want three more weeks off, it's up to you. Now you should expect your MO to tell you if he or she thinks it's dangerous, or there's some major reason not to do it, but so long as you understand the consequences, whatever they may be, go for it. Aren't H&P doing the major lifting anyway?
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Wanderingneedle, how did your scans go?
Mine are "about the same". The really good news is I have negotiated three weeks off two cycles from now. I'll be traveling some which is part of the story but my MO thinks I need a break. Guess he doesn't think it's dangerous either.
The bad news is I've been having some thigh pain. Went to a masseuse who worked on loosening up the pelvis and leg. Today my quadriceps muscle has been getting progressively worse. At 5:00pm I had to break out the crutches. Sigh. No idea what is going on. Something she did caused it I'm sure but I was feeling so good walking out of there! This morning I was just a little sore.
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Pajim, enjoy those 3 weeks off! What a treat!
I am waiting for my results to be posted in the portal but it says not until Saturday. 🙁 I see the MO tomorrow and I’ll know more then. My most recent blood tests have been really normal and I enjoyed no steroids this last cycle. My week in Texas was just what I needed after a stressful summer that’s not quite over but almost!
Pajim, every week when I go to yoga I feel like I’m starting over. I feel stiffer than the week before and my muscles - especially my leg muscles - feel really tight. I don’t know if it’s related to your leg pain but I haven’t had this problem with other treatments. I don’t go to a masseuse or get my nails done, etc, I don’t like being touched so I sore muscles and raggedy nails! I hope you feel better tomorrow and maybe you have some muscle relaxers? I’ll check in tomorrow after I get home.
Jaylea I hope the dose reduction works for you and you had a good week off. Mine has not gotten worse since my dosage was reduced and even though I still feel it doesn’t seem as bad. It’s been at least two cycles. I’m hoping it’s not permanent. My dad had some heavy duty chemo 10 years ago and still has neuropathy side effects.
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Interesting that your muscles are stiffening too! All of me is a little stiffer and I don'tt do yoga to keep them going. And I remember back in the thread people talking about leg cramps. I haven't had any of those.
But now I can't walk. Grrr. I can stand on both feet but my left quad can't take the full weight in order to walk. I'm using a crutch and will go hunting for a cane. Staying home from work with the laptop acting as a heating pad.
My MO is hooking me up with the RO. And I learned a new 'technical term' yesterday. He told me ABC. Always Blame Cancer. If you have advanced cancer and something weird/bad happens, it's almost always the cancer's fault. So I guess the cancer in my femur is wreaking havoc with the thigh muscles. [Since my right leg is OK and has no cancer in it that's probably all true]
I sure hope this isn't permanent. It would put a serious crimp in my style.
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Good timing, Pajim, I had my first leg cramp last night! Not sure what to do about it, it wasn't severe, but comforting to know others have experienced it on this regimen. But I also had a fever spike last night. I've had a few on this tx, just one night when I run a fever of about 101. I just let it run its course, hoping that whatever my immune system is fighting might include the cancer, so bring it on.
Wandering, sending massive positive thoughts for your appointment today.
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If you search the thread for leg cramps. . .Susan was having them and there were suggestions to things to do. It was either last August or last December because I was reading the thread in case I was going to start Halaven.
Wandering, good luck with your MO!
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My MO was pleased with the scan results. I have a lymph node that has increased in size and a tiny dot - 1 mm - on my lung. He kind of glossed over the report so I will have to look at it when it comes up on the portal on Saturday. We will stay the course since I have no serious side effects that we haven’t taken care of. I think not having the steroids allowed me to feel tired from the chemo instead of no sleep from the steroids. I’m dreading tomorrow though, start of the next cycle. My granddaughters are staying until Wednesday. It’s my last extended time with them since they’re moving and we’ll see them only every other weekend instead of every day. I figure I can feel bad next week
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Well, yay!! That sounds excellent.
I'm sorry your granddaughters are moving. :-( Mine live 3000 miles away so I know. Not that I would have the energy to hang with them like you do.
In my experience you can plow through, particularly on the first week, and feel tired later. Of course then I always wonder why I'm so tired later! [But it's Monday! I'm supposed to feel good by now!!}]
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Wandering, yay to staying the course! I'm so happy this tx is tolerable and doing its job for you. Pajim, your post made me laugh. I do the same - this is my off week so why am I not feeling better?! I want every one of those 7 days to feel good, I've earned them, darn it!
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How is everyone doing? I'm still not walking. Sigh. I start radiation to the left femur on Thursday. Guessing I'll need a masseuse or a PT when they are done as the muscles are wrecked
Originally she (RO) was going to treat just the hip and the nodule but has now decided to treat the entire leg. I went along with it but. I asked what the downside was and she said 'lower blood counts'. Of course this was one the phone and I was driving so I failed to think fast enough to ask whether this was permanent or just temporary. Does anyone know?
One thing's for sure -- the TMs should go down, LOL. And I get a second week off of chemo. Still trying to figure out the schedule for September. Which includes my trip to Spain regardless of whether I need to take the crutches.
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Pajim, sending prayers that radiation eases the pain pronto, and that everything aligns for a wonderful trip to Spain. I vaguely remember when I had rads at initial dx that low blood counts were a SE, and only temporary while getting treatment. I think it will be the same for you.
I'm really struggling with neuropathy in my hands. I've been on SSDI for two years which means I qualify for Medicare, and have to fill out paperwork to turn over to my insurance company. Having my husband fill it out because I can't trust my hands to fill in those tiny blanks. MO says only thing that would help is dose-reduction, which I'm already doing. If September scans are any good, I may take a chemo holiday. We'll see. Otherwise, heading in to my week off and looking forward to some energy and appetite!
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