Halaven - Day 1
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I waited forever for the research nurse to come after my treatment was done. Two hours I will NEVER get back.
These muscle spasms that I am getting are known, if rather rare, side effect of Eribulin. Nurse L doesn't think diet can control them since it has nothing to do with potassium levels. She did suggest some new products from Theraworx. She doesn't actually have any patients who have used it due to price, but the reviews around the web seem to indicate that it could work. The "tight" muscles in my upper buttocks/lower back is also "normal." She suggested a heating pad or a massage.
Halfway through day 8. The low grade headache is back and I am tired. Then again, I did get up at 5:30 to get to the hospital.
*susan*
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Whew. I made it through infusion 2.....seems like barely. Susan - your energy levels are giving me hope that maybe a dose reduction could help me deal with this a bit better!
So - had my 2nd infusion last Wednesday - Sept 12th. We dropped the Decadron and just did Zofran for a pre-med. I felt great for the first 24 hours - no headache, just a bit sleepy Wednesday night. We scheduled pre-emptive fluids for the following day when I was going for nuepogen shot. Got through that - felt just a bit sluggish so came home and took a nap. I woke up with the chills and low and behold a fever of 102.6. Argh!! Headache, but not as bad - more of the feverish type of headache. Anyway - I had been directed to call onc if fever went over 100.3, so I did and they sent me to the ER. I will spare you the details of that particular sh*t show, but they were able to rule out infection and get the fever down and the headache controlled with tramadol. I was released to go home. Went back in the next day for my second nuepogen shot and went back to bed. Still had a bit of a headache, but nothing like the week before, however, I developed a cold and was back at Urgent care on Sunday. Low grade fever again at that point. Given anitbiotic and today is the first day I have my voice back and feel human again. Still battling a sore throat and cough, but on the mend. Geesh. That was a rough first cycle! Thankfully, I am off this week and hoping to actually leave my house a bit for something other than doctor's appointments! Hoping to get a better handle on things for round 2.
How is everyone else doing? Lulu - back this week? Hoping for nothing but good for you this week, Susan. Keep it up!!
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Mustang, what a rough week you have had! So both you and Lulu are getting Neulasta/Neuprogen and I am not. To be honest, I am feeling very, very lucky. My counts haven't needed a boost. I don't recall having any problem with Neulasta back when I was doing A/C, but the stories that others told showed me that this drug can be really hard for some folks. But, to have the drug and STILL get a cold seems just plain cruel. I hope that you are able to leave the house during this off-week. I admit, I didn't. I will be right here rooting you on!
Day 9 is almost over. No Advil yet. I was able to eat two real meals today, and did a grocery store run [though I didn't do the driving.] I have prepped a pork butt. Half is going to become a Santa Fe Carne Adovada, a dish I had for the first time a year ago when visiting a friend in that city. The rest will become two different versions of breakfast sausage. I am in a search for a decent breakfast sausage formula. Sometimes, I just want a bit of breakfast sausage, and if I had patties made in the magic freezer, it would be simple to satisfy that craving. In fact, restocking the magic freezer is one of my goals. I need to make some breads, stocks, stews, and perhaps a casserole or two. One of my major goals is to put on a few more pounds. I was given the "lecture" again this week. I had to take a 20 minute nap around 2pm, but it was so pleasant, I chose to extend it another 20 minutes. That felt luxurious!
*susan*
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Day 10 I did too much. By 7pm, I had to move to my chair. A version of collapsing, I must say. I mustered enough energy to set up breakfast for the morning guests, but it was not easy!
Day 11 I was whipped from the moment the day began. The headache was back. I wake early on Friday to care for the grand, and boy do I miss those 90 minutes of sleep! Even when I woke I could tell that my blood counts were dropping– rash a little bumpier and itchy, a mouth sore or two, generally dragginess. At 8am, the grand announced that she wanted pizza for lunch, and we hadn't even had breakfast yet. I did it. Made some dough right after oatmeal was served. Her new thing is to have quiet time on a "pretend" bed in my office while I nap. She falls asleep just as I wake up, giving me a bit of Susan-time. I slept long and hard last night. I was whipped. I think I need to scale back today and give my body some time to heal.
At this point, I think it is safe to say that Thursday [Tuesday infusion] is a downward slide; Friday is the hardest energy day; Saturday is a day to rebuild.
This is my off week! I really hope that I have made it through the worst of this cycle, which is infinitely better than those 9 weeks of hell I endured for cycles 1-3.
Thoughts to all of you,
*susan*
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Well, an update....my kidneys responded really well to the steroids and my creatine is basically normal so I received the Halaven dose Tuesday, although the nephrologist said that Halaven would have been ok with some kidney issues and shouldn't be an issue. They are decreasing the steriods, but will take 6 weeks! They are negatively affecting my sleeping, so now I have to take something for that. But I was very happy to get the Halaven dose at a reduced dose. It's not clear whether I'll ever get the Keytruda/Pembo. The kidneys were a grade 2 injury, for the trial you aren't allowed to receive it again if you have a grade 3. So, we haven't totally ruled it out, but if I have a similar response in the future it may damage my kidneys worse the next time. If I don't get the Keytruda for >12 weeks I think I'm technically off trial. I really want to stay on it, or see what the next scan shows in Oct.
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KPW, great that your kidneys have responded so very well, but six additional weeks of steroids sounds nasty! I would be the angry, almost-bald woman getting irritated in the dairy aisle at the dawdling people who don't know what kind of yogurt they like to eat.
Do you know what your reduced Eribulin dose is/was? Are you feeling more alive with this reduction? For me, the difference has been amazing.
*susan*
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Susan, just checked the MD notes and looks like I went from 2.55 mg IV to 2.0 mg IV. This was due to increasing neuropathy. I'm feeling pretty good, there are several things that could be contributing to feeling better....I've been off the chemo/Keytruda for several weeks, my kidneys are recovering....I don't think my neuropathy is worse this week, so that's good.
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KPW, that all sounds positive. The neuropathy on Eribulin was shocking, since I thought I “knew” neuropathy from my 19 months of Taxol. I am thinking this morning, that my neuropathy in my feet is actually receding a bit. Hands are still a mess, but fingertips are also better.
Hope that the rest of your week is equally good!
Susan
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Susan, hope the recession of neuropathy continues with your feet and fingertips. I find my fingertips the most sensitive. I do notice an improvement with the week off.
My kidneys are back to normal, labs good and I received the Havalen today. Woke up just after 4am, got tired this afternoon and had to take a nap. I really don’t like taking the time to sleep in the day......I’m not completely sure it makes sense to feel annoyed, but I’m am. I wanted to exercise and get the Havalen coursing throughout the vasculature......but have developed plantar fasciitis over the weekend-Argh
KP
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KPW,
Ah naps and daytime sleeping. I gave up being annoyed with that some years ago. What annoyed me was during the first 3 cycles of fun-dose, I was requiring three naps a day! There was no day left! So now, I am grateful if I just need a 20-minute snooze. Funny how our perspective can change, isn't it?
Susan
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NED! Wife's PET/CT scan results. NO METS, OMG! And today was her birthday. She is (was) TNBC with extensive spinal and hip mets. Tried Xeloda and it failed after 18 months. She's been on erublin (Halaven) for last 4 months with two push infusions for two weeks then a week off. She'll probably have to stay on it for a while to get rid nasty lingering buggers. Still in shock!
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Awesome!
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That is wonderful Mike! The two of you just be "over the moon." I am fascinated that you believe your wife will be able to continue treatment free. I was never given that option when I was NED; guess things have changed? Doesn't matter.... enjoy this moment!
*susan*
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Just checking in.
Mike - Congrats on NED!!
Susan - Glad to see the neuropathy is getting a bit better. I may have missed it - but are you taking anything for it? I haven't experienced any yet - but I am only in cycle 2, so....
KPW - so glad your kidney's are back to normal. Do you know yet if you get to go back on the Keytruda?
Update on my experience with Halaven...I posted about the horrible Cycle 1. I went back last Tuesday and met with my MO. After thoroughly going through the timing of all side effects, we determined that the one thing in common with both infusions was the horrendous headaches began 1-2 hours after the Zarzio (similar to Nupogen) shots. So, we eliminated it for last weeks treatment. It was definitely the culprit - last week was downright easy in comparison! I felt tired on Wed/Thursday - did have a very low grade fever on Thursday but I was able to get it down with Tylenol and it didn't come back. No nausea to speak of, just fatigue. I can handle that. I was able to have a normal weekend spending time with family with NO NAPS! I am so relieved. I go back tomorrow for infusion 2 of this cycle and am not really even dreading it. I just hope my counts came up enough naturally that I don't have a delay. We shall see. He said as I will get normal dose if I am at 1.3 or higher. If between .8-1.2, I will get reduced dose. If under .8 - I will have to go away and try another day, lol.
Oh, and did I mention.....my ca125 came down 7 points after the first cycle. I know that isn't a lot - but -- they didn't go up!!
Lulu - how are you doing?
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Mustang, so good to hear you solved the headache problem. Here's hoping your WBC will play nice with you without that extra drug.
I've had a rough patch and haven't been posting as much because I can barely type.
On 10/13, I had a terrible triple-impact fall and had to spend a hard night in ER. Thankfully nothing fractured, which is a miracle considering I have mets in almost every bone, but I do have serious radial nerve damage in my left shoulder down to the fingers (which still feel almost dead, and I don't have much use of that arm), several rib contusions, lots of deep, deep bruises from head to toe. I am in physical therapy for a while to try to regain use of, well, everything.
Like cancer is not enough hell, y'all. Oh no, I gotta be an overachiever and find ways to suffer even MORE. LOL. But Seriously.
I was on my patio when a wasp stung my finger. I flicked it off but then heard the hum of more wasps headed my way. Fight-or-flight kicked in-- and I have now learned the hard way that primal instincts do not stop to remember you have neuropathy. So my legs started to run toward the back door, but my feet totally failed to keep up. This launched me into a double plate-glass patio door, face and shoulder first. Then I ricocheted into a brick wall on my right (ear, skull, other shoulder), then I crashed hard onto concrete on my kneecap, big toe, and elbow. So yeah, I looked like I'd been in an alley gang fight or a terrible car wreck. Black and blue everywhere. I'm healing slowly, but it is getting better.
My tumor markers were steady after the first cycle of Halaven, whereas they had been climbing a bit every month before, so that is good but not good enough to pop a champagne cork over... and it meant we needed to go ahead with treatment a few days after the accident. Hell, I tell you. I've finished two cycles and now begins a much-needed week off. Praying big for a drop in markers on this Friday's labs.
One thing... the first Neulasta On-body or whatever they call that beeping belly pod thingy... almost wrecked my will to live. So this past week I lobbied for a half-dose, a 3mg injection in the belly the day after chemo. MO agreed to try that, and so far it has worked a whole lot better for me. Nowhere near the bone agony as the belly rocket pod dose.
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MustangIA, Keytruda is still a question, I won't know for several weeks.....after scans and evaluation at my local hospital and Dana Farber. Technically I could get it, but there are questions whether it would cause worse kidney damage the next time, if there was a reaction.
Lulubee, What a horrible fall! I hope you are able to recover more on your week off. Do you take a claritin with the Neulasta? I think that helps me a bit.
Susan, Glad to see the neuropathy is a bit better. I think mine didn't progress at least with the decrease in dosage of the Halaven.
The steriods are not letting me sleep.....and that is something I've never had issues with. We started Trazodone but I think I need a higher dose. I like getting enough sleep....
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Mustang, how wonderful that your blood booster was to blame for your misery. So glad that you didn't need it this week. And it sounds as though Lulu was also slammed by her blood booster. It sounds as though you are having a similar experience as me, though I am on the lower dose.
I started cycle 5 yesterday. Uneventful day at a hospital that is known for great delays. I was home by 10:30. But, within moments of my push, my headache was back. Had some stomach pains for the first time. It was also the first time I ate something before the treatment. I won't do that again! Only new physical side effect I have noticed is my left hand, which can cramp up so that all the fingers are tightly agains the palm of the hand, and the fingers simply won't move. I use the skills I developed when playing violin professionally to talk my hand through relaxing. It takes a bit of time, and I don't like it at all. Otherwise, feet are pretty much the same. I continue to have large muscle cramps, mostly at night. And that left foot wants to drag.
I have sent in my application to get a handicap placard for my car. I can see that there will be days that I will need it. These benchmarks are hard.
*susan*
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Hello All,
After 15 cycles on Doxil my tumor markers have increased, but more importantly, my liver enzymes have shot from low normal to all quite a bit elevated. Sigh. Time for a new drug. I have one MO saying Navelbine should be my next move. Another MO states that I should consider doing Halaven. I know everyone reacts differently to different drugs. I have heard that this is tougher than Navelbine but over on the Navelbine thread it seems like quite a few women are having a tough time with Navelbine. How are you finding Halaven? Any thoughts if you have experience with both of these would be greatly appreciated.
MRI (for persistent headache) and PET scheduled for Friday morning. I expect progression but am hoping to avoid brain mets. Trying not to be too frightened right now. Doxil has been the only drug that has worked for me so I am working hard at trying to stay balanced.
Warm blessings,
Kimberly
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kachincolor, I got 9 months on Halaven. Day 4 and 5 were my 'I need to rest days' but I could still function. Also do lots of mouth care and a mild laxative and you will be fine.
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Tennille, I really want more than 9 months.... way more. It makes me a bit anxious that each treatment [that I respond well to], I am getting less and less time.
Kachincolor, as I see it, I will get Eribulen/Halavan and Navelbine. The only question is in what order. My concern about Navelbine is the whole diarrhea thing; with some others on these boards over the years needing adult diapers to go out. I just don't think there is a crystal ball to tell us how our bodies will respond. In my case, since there was a trial that my oncologist recommended, the decision was made for me [ in a way.] And why do you have TWO oncologists?
*susan*
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Thanks for your thought Susan. I really appreciate them. When I was diagnosed with MBC within a year of being treated with chemotherapy for stage 1 cancer, I wanted to get some perspective outside of the Midwest where I live. I went to Dana Farber and really liked why the consulting MO had to say. So both my MN MO and my Dana Farber MO collaborate on my case. Which is really good because yesterday I thought my scans would just tell me how much more progression I would have in my bones/liver. Today they discovered doing a brain MRI that I have more than fifty teeny tiny brain tumors. So no chemo for me until we finish whole brain radiation. Sigh
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I've seen 3 oncologists....2 in Boston, one where I had my surgery at MGH (hospital), and one at Dana Farber (DF). I live a couple of hrs away. I have one locally and so far they have offered me here (the trial, I'm on now) what they offered at DF. But, I'm very interested in clinical trials and DF did offer more trials and MGH different trials than I may have access to here.
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kachincolor,
Well darn! I don't care what size your brain mets are, though teeny tiny is better than like a grapefruit, that is not good news at all!
I found Dana Farber so off-putting my first few months there, i am impressed that you could look past the factory setting and focus on what your consulting MO had to say. In my case, i followed my doctor there, and was a bit grumpy about it. And I had had my first real progression, and was very grumpy about that.
Best...
*susan*
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Kachincolor, I’m sorry to hear about the brain mets. I have a friend in CA that was treated for brain mets 5-6 yrs ago and they have not come back...she still has bone mets and has those for - 10 yrs.
My grouciness when I visit DF is the all day affair....I hate that my husband, who comes with me to all apts with MOs, has to take an entire day off. But I feel like I need his ears and brain there....and opinion. I do feel like they don’t rush me and feel like I get excellent information, so I go infrequently when a new decision needs to be made.
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Dear *Susan* and KPW3
Yeah, the tumors were totally a shock and my MO and RO have called it a “medical emergency.” I had the mask made and my first round yesterday, and today theyopened the Radiation Oncology unit just for me to get another round of radiation. I have NEVER taken such a big step with so little information since I was diagnosed in January, 2015.
Anyway, I had a horrible time at Mayo Clinic. It is wild how sometimes the “great clinics” near us just don’t work out and the “great clinics” away from us work out. I liked my Mayo Oncologist but everything seemed to slip through the cracks and I could never get ahold of the same nurse or asstant. My MO even bragged that her assistants shielded her from too many patient calls. That is when I concluded that this was not the place for me.
I think areas have certain trends in their approach and I just like having a quarterly relationship with my MO at Dana Farber. I have a son who lives in Boston to it is fun to come see him on a quarterly basis as well.
Won’t know what my chemo regime will be when WBR is done but will check back in to see how you all are faring.
Warm blessings,
Kimberly
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kachincolor… good good luck, my mum was met diagnosed 4 years ago, she was diagnosed 6 months ago with "uncountable brain mets", she did WBR in the middle of May and an emergency brain scan showed NED in brain (at the end of August), it was a superficial seen scan but at least if the brain is not clear at all it isnt worse.. She was taken halaven, after 15 days she was taking halaven again. best wishes
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Today was cycle 5, week 2. I had a different research nurse today, with different suggestions about my side effects. But first, I made several people laugh! I mentioned that I had had a fever last Wednesday. It reached the magic 100.4 level, and I explained that though I had been told to call or come in at that temp, I have a different rule. My fever must remain at that level for at least 3 hours before I will even consider a trip to the ER. That made them all laugh, and then they all agreed that it wasn't a bad rule. Anyhow, this nurse suggested taking Magnesium and Vitamin B Complex pills for the cramping in my large leg muscles and hands. Has anyone tried that? As I listed my side effects, she kept jotting down notes. She then looked up and said, "Wow. You are getting all the rare, but documented side effects." Lucky Me.
New routine at the hospital today. If you agree to a flu shot, you no longer have to go to another floor and wait in line. The shot is sent to your infusion nurse and given as you finish treatment. I always forget how sore the injection site is after a flu shot.
So, overal, I am doing okay.
Oh, one other thing. Research nurse allowed how there is one more possible dose reduction possible and still stay on this trial.
*susan*
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Susan, do you know the particulars of your dose?
My fingers are getting worse and worse, and by now and I am certain that foot neuropathy caused my horrible fall last month. I would be very interested in a dose reduction except I'm in cycle 3 and my markers are still inching up. Dang it. Not the trend I was hoping for.
On that thought, where do y'all think Halaven falls, generally speaking, on the fast--slow response time continuum? How long before you markers started trending down? Some of these drugs have slower response times than others (Ibrance comes to mind) and I'm wondering if Halaven can be one of those for some people.
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Lulubee,
Found the dosages on one of my previous posts, "here are my dosages: full dose was 1.4 mlg/M2 [squared]. I am now getting 1.1 mlg/M2 [squared.]" My tumor markers are going down, but more slowly than when I started other treatments. [Let us see how this cut/paste goes:
Easy to see where I started to "smoulder." Cycle 1 of the Eribulin was on July 10th. Look how slowly they are drifting down. I would have thought I would be back in the 70's by now. I reduced dosages on cycle 4. I couldn't handle the neuropathy and fatigue at all.
Sorry, this site destroyed the html, so I have added a screen shot that is a bit small.
Hope this helps,
*susan*
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