Halaven - Day 1
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Thanks, Susan.
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Hi ladies , I just started Halaven last Friday . Side effects not bad except I have a question ? I'm not in pain , in fact I feel great today . But yesterday and today when I pee there seems to be pink color to it , so I'm guessing it's blood anybody have this problem ? I'm scared and want nothing to do with hospitals ! ( been there to many times this year) Should I drink more water ? I just want to get on with my treatment and beat this cancer to the ground !!
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Hi Kimchee,
Glad to hear that you are feeling well on your first week of Halaven. I have never had blood in my urine. I am pretty sure that if I saw pink urine, my oncologist would want me to come in to give a urine sample. I also hate hospitals, but treating something like this shouldn't involve an admittance, should it?
Let us know how you are doing.
*susan*
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I also have never had pink urine (probably blood?). I would definitely check with the oncologist.
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I've had pink urine. Either you have eaten beets, or that is red blood cells, and that is your bladder sending up a red flag (literally).
You need to get a UA done ASAP. As cancer patients, we can get infections, go septic, and things can turn ugly FAST. Don't mess around with bad bacteria because it can always mess around with you more. It's easier to pee in a cup and take a round of antibiotics than to wind up in the hospital for 2 weeks from sepsis.
As for me, I've been on treatment nonstop for 8 years and my bladder is fried. It burns *badly* for a couple days every week and urinating is painful. It's painful enough that I always have to take pain meds and AZO to function when it flares. This has been going on for 7 months and I've been referred to see a urologist to make sure it's not my lobular MBC showing up in my bladder membrane. (Oh great, right? At least that's really rare... but then again so are biliary duct mets and pericardial mets, and those are my specialty.)
I've had multiple UA tests over the last 8 months and they are all negative-- meaning it's never bacteria for me, it's just bad cystitis type inflammation.
I am slowly adapting my habits to protect my bladder better. Basically more hydration, triple IV fluids with infusion, alkalizing powder in my water, never drinking acidic drinks without flooding my system with a big glass of water first, fewer acidic foods, digestive enzymes, dried aloe vera capsules, magnesium oxide, monitoring what I've ingested before a really bad flare, etc.
It's all a pain in the tail, and I mean that literally.
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Thank you everyone. It turned out to be a side effect of the Halaven , I drank a ton of water and flushed it out so I'm doing good now . But Thank you again for you all and your quick response . Hope all is well
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Kimchee,
That is great news! When water is the treatment, life is pretty darn good, isn't it? Is Friday your treatment day? Will you get week 2 then?
*susan*
p.s. I plan to write a longer post outlining cycle 5 later today, but right now I have some Swedish Blueberry rolls to bake.
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hey Susan , I'm going for my third treatment this Friday. So how is everyone doing ?
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Today was day one of cycle 6. I am settling into the "this is my life" phase of treatment. My biggest side effect is the night (mostly) leg and hand cramps. Stretching out my legs before bed does actually help. Until about 4:30am, and then shifting my position can trigger a really nasty cramps. These cramps can make me cry. A friend suggested walking it off. That landed me on the floor. Not going to do that again! I will have scans at the end of this cycle, and we shall see how I am doing.
Kimchee. How are you doing so far?
Susan
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Susan, how bizarre-- I was just coming here to ask if anyone else is having horrific charley horses! I had one in my calf last night that woke me up and I actually had to do Lamaze breathing to get through it! There is NO WAY I could have even stood up till it was over, and yes, there was a tear or three. That calf is still so sore today that I am afraid to walk much for fear it will trigger another cramp.
I took magnesium before going to bed last night, and I am wondering if that triggered a calcium deficit that triggered the cramp. A PT said it could be potassium deficiency also. I ate a huge banana today and loaded up my baked potato with calcium AKA cheese and sour cream. (Any excuse, right?) Just tossed back two calcium gummies. I'm kind of afraid to go to bed!!
I know these meds can wreck our mineral balances. I guess I'll supplement for awhile and see if it gets better. Do you take minerals?
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I have these leg & feet cramps too. Most of the time I have to stand on my feet to get them to go away. I started using a heating pad, actually just changed to an electric throw over feet and legs, and it has dramatically decreased the # I get each night.
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The muscle spasms/cramps are escalating. Today during chemo, I turned to my left in the recliner to get something out of my bag, and my entire right quadricep seized up in a severe cramp that lasted 30-60 seconds. I have never had a charley horse type cramp in my THIGH. It was horrible and it was all I could do not to make a scene. I was in tears.
When I go back in tomorrow for Neulasta, they are going to run a magnesium test. It's not included in my routine CMP or CBC labs.
I am doing better in general with Halaven & Neulasta, except for these spasms. Otherwise, of course I have the usual fatigue we all expect on these meds, and the neuropathy is gradually getting worse despite icing, and I am learning that I cannot let up for one day on the stool softeners or I get in big trouble fast. But in general I have to say I feel better right now than I did on Taxol, and I have less brain fog.
But... thigh cramps... foot cramps... calf cramps... neck/jaw cramps... hand cramps. OUCH.
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Magnesium levels were 2.1, in normal range. Phooey. I was hoping we had pinpointed the problem and it had an obvious solution. Instead, my onco nurse is just saying, "We see these muscle spasms and cramps and awful lot and I'm convinced some chemos just cause them. Don't know why or what you can do about it. Sorry."
Gee, thanks for all the science.
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Gathering some extra energy to report, and respond to Lulubee. I am on day 16 of cycle 6. Scans are tomorrow. Blood work is looking fine; well except for those tumor markers. I had had a steady drop during the first five cycles, but this cycle, week 1, they were back to where we started. Not promising to be honest. Tumor markers, especially 27.29 and now the 15-3, have been very accurate for me in the past. The CEA has not, but even that one has shot up to the highest level in years. If history repeats, tomorrow's scan won't show a progression. The tumor markers go up about 2-3 months before the scans see the uptick. Damn! So yes, I have scans tomorrow. Due to the trial I am on, it is a CT which I detest.
I am not loving this drug, to be honest. As Lulubee mentions above, the cramps are fierce! My trial nurse has stated that they can not be controlled through diet. She has hopes for a topical cream but none of her patients can afford the cream, so she has read the results but doesn't have first hand notations. She has suggested that I do leg stretches before bed and that does help. I have added arm stretches too. But how do you stretch your neck/jaw? And I can't stretch my hands in an effective manner. I am getting what they call trigger finger which is really scary. There you are, slicing garlic thinly and suddenly your hand is clenched and unusable. I have learned how to wake as a cramp begins and work to reduce the intensity. There is a price for that though. Other muscles in my body seem to absorb the tension, and I am simply not getting solid blocks of sleep. Neuropathy continues to be an issue in my feet as well. For the first time, I used my handicap placard in a parking lot since I just couldn't imagine walking from the other spots.
Does anyone else feel that their arms are getting weaker? Lifting a king duvet is really hard for me these days, and I don't recall that being a problem in the past. Getting that same bloody duvet into a duvet cover is like doing pull-ups.
I am not needing stool softeners. The headaches still exist but don't have the same intensity and I can often go several days without an Advil.
My commitment to helping out my daughter and son-in-law with their kid's childcare and preschool delivery has increased dramatically. We now get up at 6:15 every day [early for me] except on chemo days when I have to get up around 5sm. I am making her breakfast four days a week, same with lunch and snack. Some days she carries her lunch to school; others we are at home. Good thing I like her!
Cycle 7, assuming the scans are stable, should begin on Tuesday. I plan to enjoy these few "good" days before then as much as possible.
Susan
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Susan,
I get the cramps too. It could be just a "years of chemo" thing. When they are bad, I take an Ativan. Benzos are a great muscle relaxant - I find they work faster and better than the real stuff.
I have elastic therabands that I use to bust the muscle out of the contraction cycle. It's like steering out of a skid - go in the direction of the contraction at first until the intensity slightly decreases, then ask the muscle to go in the opposite direction.
You can stretch your neck. Are you having the cramps in your swallowing muscles, or the neck turning muscles? I get them in the former. Point your chin in the air as high as you can, take big "Jaws" style chomps while trying to point your chin back as far as possible. In an emergency, you can also drive a knuckle into the center of the muscle to collapse the contraction.
Hugs to your grandchild. I am in awe of your energy.
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Here I sit in an infusion chair at Dana Farber. Scans show stable, so we are off to the races! Cycle 7, week 1.
My PT bands are, it appears, at the end of their life. These were the cheap one that they give you for free at PT. I pulled one out of a drawer, did a stretch, and the thing simply turned to dust. Clearly, I would need to buy fresh ones to do these stretches. Anything to help with the cramps though. They are interrupting my sleep, my life, my happiness. [And it is all about me, isn’t it?]
Nurse Lynn is here
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Hello Ladies
After about 6 months on Xeloda, my onc decided to take me off it because it wasn't working well on the dose I was on, and a slight increase in dosage caused me to sleep 12+ hours a day, and barely function the rest of the time I was awake.
He told me the major side effect of this new treatment, Eribulin, was hair loss, which I really don't care about. But now I see all you poor ladies with massive muscle cramps. I am quite susceptible to them and now I am scared.
I should start this medication as a weekly infusion in a few weeks. We might do a biopsy before then. He wants to send it to Foundation One, which I have never had done before so that should be interesting. They have to decide if it's going to be a liver or bone (Spine) biopsy. I prefer the liver one, it was easy and pretty painless.
Any other nasty side effects I should worry about?
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Hi Mzmerz, Been a long time since I have seen your name. Good to see you once again. My hair thinned [it was already pretty thinned from Taxol] but I actually had to pay someone to cut it this week. How annoying. I don't really have money for hair stuff these days. The muscle cramps are my biggest complaint on this drug. On day 4/5 and 11/12 are the worst for energy. I have headaches [and have run out of Advil! Ack!] Tonight, I am running a fever. Is this the precursor to being sick or a side effect of chemo? I have no idea. I am watching this closely, but going to the ER in a major city on a Friday night is about the last thing I want to do.
Tuesday through Friday, I am starving and have learned to eat as much as possible. Then my appetite wanes and the pounds start to come off. I try really hard on Monday to eat LOTS of calories so that no one on my medical team notices. But, note above, money is getting tight, so my go-to take outs are really not an option. I love to eat Massaman curry on Mondays but Mr. 02143 doesn't like this dish. I simply refuse to make two different meals.
The off week is a bit of a disappointment. When I was on Taxol, there was a great curve upwards for the entire week. On this drug, I sit at the bottom for longer and don't feel that I get the rebound as quickly as I would like.
This is what I have energy to report tonight. Have questions? Please ask. I will do my best to help you out.
p.s. oh the neuropathy and dropped foot! forgot to mention those!
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Susan 02143, When did you develop a dropped foot? I just went to a PT about this happening to my right foot. Have you been able to do anything about it. The PT gave me some exercises....do you think it's due to a neuropathy? I have neuropathy in my fingers but it hasn't been noticeable in my feet/toes.
I'll have to update later on my Eribulin, pembro trial....
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KPW, I think it was around cycle 3 that I started to notice that my left foot didn't always "go" with the leg. I haven't done anything about it, though I have certainly reported this to the clinical trial nurse. My strategy has been to always pay attention when I am on the move to ensure that this foot doesn't get caught on a wire, or area rug, or the kitchen island. I do think, non-scientifically, that the stretches that I am doing for the cramps has helped a bit. I think Dana Farber categorizes dropped foot as a "strain" of neuropathy. Because having one kind of neuropathy isn't enough! i know that I have had at least four different versions over the past two years.
Would love to hear about the exercises suggested by your PT.
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I don't think Halavan is working for me . Freaking out my tumor marker are climbing ! Where to next ?
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Kimchee,
It is always scary when those markers rise, isn't it? Do you have some scans scheduled? Scans always rank higher than tumor markers, at least with my doctors. As to what might be next, since I don't know what treatment protocols you have already done, or which version of this blasted disease you have, it is impossible to guess. Sorry that you are having fears....
*susan*
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Susan, here are the exercises
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thank you KPW. Printing now.
*susan*
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I got great news today, finally. Thought you might like to see my CA 27.29 tumor markers.
Before starting Halaven: 89.9
After Cycle 1: 88.5
After Cycle 2: 95.4
After Cycle 3: 94.1
After Cycle 4: 59.6
Yes, that's right! My results today show about a 40% drop in the last three weeks! This is after having my markers steadily rise for almost two years straight. My scores have not been in the 50's since January 2017.
A research nurse told me back in August that Halaven can be a slow starter and to be patient. My oncologist backed that up by saying she was not even going to look at my labs expecting improvement until we had at least four cycles behind us. I'm glad I listened to them and decided to be patient and not get overly anxious.
I'm supposed to have a bone scan the first week of December and I'm almost tempted to cancel it and save the radiation impact for times when I need the surveillance more.
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Wow, you're on the way to NED. My wife was Stage 4 TNBC and Halaven wiped out all of it. She's NED now. Magic stuff despite the nasty side effects.
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lulubee, I am very happy for you 😉
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lulubee,
If my legs didn’t hurt so much this morning from last night’s cramps, I would be doing a happy dance right here in the Dana Farber waiting room. This is just terrific to hear!!!!!
*susan
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So my doctor called me and said to give Halavan some time to work . So Thank you ladies , I hope it turns out like Lulubees .
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Mike, that is lovely to hear! Hallelujah for your wife's great results!
Susan, I am still having muscle spasms and cramps, but I got a little more serious about taking B vitamins and trace minerals and I do think it may be helping. I am also taking Natural Calm magnesium powder before bed which I think is quelling the nighttime charley horses and also helping me sleep more soundly.
My onc's PA gave me a 10% dose reduction yesterday. She confirmed that I've been on the max dose. Besides the hands and feet, I have now lost a lot of feeling on my shins, which is just a bizarre sensation. I suspect I have a little neuropathy in my bladder, too. I'm going to try KPW's exercises and haul out my lymphatic rebounder.
Kimchee, hang in there! Your good news may be coming, too.
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