Halaven - Day 1
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Wanderingneedle;
Thanks I will keep those in mind. So far so good with my sister. She has changed up her diet. Her blood work looks ok. Her CA was 170. At one point over 6 years ago, it was 2100. We are just looking for a daily quality of life. Thanks to everyone. Powerful thoughts of peace and healing for all.
Mark J.0 -
Happy Birthday!! And here's to many more, she says, lifting a glass of water because wine already tastes bad. . .
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phew, doing ok on the neulesta shot. I'll just get one shot the day after my first dose of halaven. Had chemo tues and doing ok so far. A little achey and I do not sleep sound. I for sure need a stool softener! This part is hell!
I wrote the first paragraph early in the day so I’m now getting achey legs. Does anyone else get that? Last dose I had it was my back that hurt bad. Seems like Tuesday, Wednesday and Thursday I’m ok but by Thur night and fri I’m achey very bad.
I had the chills and slight headache today too. No taste and dry mouth. I will see what tomorrow brings.
Sarah
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phew, doing ok on the neulesta shot. I'll just get one shot the day after my first dose of halaven. Had chemo tues and doing ok so far. A little achey and I do not sleep sound. I for sure need a stool softener! This part is hell!
I wrote the first paragraph early in the day so I'm now getting achey legs. Does anyone else get that? Last dose I had it was my back that hurt bad. Seems like Tuesday, Wednesday and Thursday I'm ok but by Thur night and fri I'm achey very bad.
I had the chills and slight headache today too. No taste and dry mouth. I will see what tomorrow brings.
Sarah
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Thank you for the birthday wishes, pajim! I hope I get many more, too! Too many with this disease don’t get enough! And about all I drink is water! Lots of it!
Oh what a long week! I forgot to post my blood test results. After having my granddaughter spend her spring break with me and my aunt and uncle coming in on the day she left, I was a bit tired. They left on Sunday.
My WBC were 10.4 - almost high. Absolute neutrophils were high - 7.3 - but not much. The doctor didn’t mention it. Tumor markers were up - 35.5 vs 33 last week (they’ve never moved moved much but when they’re higher my current med has stopped working). Doctor said he didn’t know why they’re up but he thinks my tumor has shrunk more so I’m having a PET/CT scan next week. Another marker that went up but is still in the normal range - LDH. It went from 146 last month (that’s about where it’s been since I started) to 175 last week to 216. Don’t know what to think. I’ll wait for scan results and see what it shows. I’m hoping for a scan with no mets showing!
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wandering- I did reada few ladies on here had numbers go up and had scans and no changes. Hoping that for you!
Does anyone get bumps? I got them on my neck after the first dose. Now round two, second dose I have them on my arm. Not red and not a rash. They don't hurt at all just small bumps. Ones on neck are still there and lots of lotion makes them smaller but when that wears off they are back. Lots of back pain and dry eyes after this dose.
Still doing ok on the hair. It was growing back some so hard to tell if it is thinning. I don't think so bc I don't see any on clothes and it is black hair.
Sarah
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Hi Sarah! No bumps for me. But again, a mouth sore. With normal neutrophil levels at infusion. Sigh. Ow ow ow.
My hair is growing back too, but really slowly. I don't know if it'll make it back. The white fuzz is about an inch long, maybe more. The brown hair looks like a marine buzz cut. I'm not ready to go out in public this way.
I am on the road at a conference. One talk down and one to go. I'm wearing a formal head cap (black with a white head band). I thought of bringing and wearing my wig but decided to send the message that chemo patients go to work and can give talks at conferences too. Not a soul has said anything. Maybe they're talking to my colleagues behind my back. Very interesting though.
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I’m on my off week after round 2. I am tired this week so can tell the neulesta does help.
I can’t really tell if my hair thinned but I don’t think so. It’s finally growing in on the sides. I always had a tiny amount on the top of my head through ac chemo but nothing on sides and very tiny amount on back of head. I have had to shave my legs twice now. I for sure did not miss that!
Good for you pajim for not doing the wig. It is true you can still do many things as a normal person with cancer. I’m not ready to go without a wig either.
My stomach hurts as well. It seemed it started on the off week. It feels more like someone punched me in the gut.
Did you get any news yet wandering?
Sarah
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I’m up early to have coffee before my 24-hour pre-scan. ☕️ I told my son it’s for his protection. I’m already wired from the steroids they give me with the Halaven. 😜 I like the 6 am check-in for scans so I’m in and out. People are usually focused for the first appointment of the day and not behind.
I’ve had two instances of shedding since I started the Halaven in February but not enough to keep wearing a wig. I had shaved my head to make my wig fit better when on abraxane so it’s short but I’ve had short curly hair for most of my life only growing it longer in my 30’s. I don’t mind because not many people recognize me when I go out and that’s fine. I prefer to remain anonymous! Let’s me do what I need to do!
I hope your stomach feels better today, skitzblitz - figuring out which treatment causes which side effect can be tiresome, and then figuring out what to do about it!
Pajim, I hope you’re having a good time at your conference! I haven’t had mouth sores but some tender spots on my gums. I’m prone to fever blisters and have had 2 of those in a month. Do you have the magic mouthwash? I heard it works.
Coffee is done, off to start my day. I love taking my granddaughters to school and having the youngest one after school. They are my delight.
Have a good day everyone!
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Scan results are in - size and SUV decreased on main tumor. Only one lymph node lit up and it also showed decreased size and SUV. The lesion on my pelvis still shows up but said it can’t be assessed on current exam. Had uptake throughout the bone marrow from the CSF shots I get. This is the smallest the tumor has been since I started treatment in January last year. I’m hoping the Halaven continues to work.
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wandering- yeah yeah yeah I’m so so happy for you I could scream! I’m so glad it’s working. How many treatments have you gotten so far? I know halaven can be great when it works and I’m glad you are one of them! How have you been feeling?
I go to the big chair tomorrow for dose one of round three! Hoping my numbers are ok. I’m tired off and on. Son that makes me fear my whites are still low. I am very Achey but some days I’m busy and that seems to set it off. I was on xgeva every four weeks but when I switched to halaven he switched me to every six weeks for the shot. I have been on it three years now though. I man also not going to get Lupron any longer. Not sure if it’s wearing off and making me Achey or not. I’ll ask about it tomorrow.
Glad to see some good news for once!
Sarah
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Sarah, I’ve finished 4 cycles. I can’t believe how fast it worked for me. My other treatments worked well until suddenly they didn’t so I’m hoping these results stick for a while. I also get zometa and faslodex, and the shots I take for white blood cells cause pain for a few days but they let me keep going and I have lots to do. I watch my two granddaughters after school and my disabled son lives with us and my husband still works full time so the fun never ends at our house.
Good luck with your time in the chair tomorrow. I know it sucks but it keeps you going. Are you able to get your blood test results before you go? All my blood test results are online so if there’s enough time before I get chemo I can see my results and can ask questions. The same with scans. I like to know what’s going on.
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Wandering, that's just awesome!!! Congratulations! My NP told the that people to respond to Halaven tend to do it for a long time. I don't know what her definition of 'long time' is, but in my book it's at least a year.
Skitz, hang in there!
I go into the chair tomorrow for Day one of I can't remember. Round 7? My husband is sick. coughing, sneezing, etc. He slept in the other bedroom last night and I left for work as early as possible. If I catch whatever he has it's going to make the next two weeks miserable. I've decided to ask for the GCSF just in case. I hope the shot doesn't make me too achy.
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wandering- I did get all my numbers. I usually do before I start chemo. My liver bloodwork numbers were all up- ast,alp and alt. Not going to worry just yet bc I have seen that with others in past reading of this blog. In four weeks I’ll get a cat scan. I didn’t get back my ca27.29 yet though and keep checking online. Was this time the only time you’ve numbers were elevated?
Pajim - I hope you do not sick! I seemed to have escaped all colds cough and flu this year with my crappy immune system! How bout your numbers? Have they gone up as well?
Sara
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I get mine tomorrow afternoon just before I see the MO or NP. Think it's the nurse this time. Because I need an iv I just suck it up and spend the afternoon in the waiting room. My TMs seem to have flattened out. If I don't hear tomorrow I find out on the portal in a week.
My LFTs are always high. Always. Sometimes they are higher. I don't worry about them as much as my MO does. I keep pointing out to him that's they've been higher than normal for years.
I'm uncertain whether to ask for a scan. Sounds like you guys are scheduled regularly, like every 3-4 months?
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pajim, if you are comfortable with your scan schedule then you don’t need one more often. My MO is conservative preferring to go at least 6 months between scans. Because my tumor has been shrinking I asked for one so I could see if the mets were responding. I know some people go a year between scans because they’re stable and there’s nothing to see.
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pajim- my doctor is pretty conservative too with scans to save me on radiation. Since the numbers are up and i didn't get both doses the first round he said he wanted to check to be sure. After that I prob won't have another scan till numbers jump again.
My ca27.29 was up as well. They called me late today which is odd. I normally know that before I leave the office.
I asked about why I'm so damned achey and he said it could be from coming off the Lupron. I had that thought as well but wasn't sure. Between no Lupron and xgeva every six weeks inflammation could also be a reason my numbers are up. I have heard that before. Time will tell but I'm just not freaking out about it yet or four weeks until scam will feel like 6 months. I think they should call u the night before and say “scan tomorrow" so u don't have to sit and worry worry worry. I'm lucky though I get results the same day. My doctor goes down himself to look at them with radiology and then radiology reads the mail further.
Have a good night
Sarah
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Aah! You guys don't get scanned regularly either. I had my last on in December -- showed major progression. TMs have dropped like a stone since then. So we assume everything is better. And normally we wouldn't scan again until something happens. But then the radiologists are comparing to last december. Which means it would have to be pretty bad before they declare a progression from Halaven.
Maybe that's actually fine? I don't like to switch treatments too soon. I like to wring out every last month I can get.
Idle things to worry about on a Wednesday morning before heading to the cancer center. Normally I don't worry about these things. Or it's all subliminal.
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where is everyone? How is everyone holding up? I did get my sending does of round 3, today!
I still have my original tumor in breast. Tonight it was throbbing and had stabbing pains there. I can tell it has shrunk quite a bit on halaven! To me this is a good sign bc it seems to go up and down as I have shrinkage or progression.
I will take any regression I can get.
My uncle was diagnosed the same exact day i was with cancer. He has bladder cancer. He has been on Keytruda just about a year and has now stopped working. I’m so so sad for him I can’t even text him. I don’t know what to say. I’m at a loss here with this. it’s a stabbing in my heart. He has so much more trouble than me with having cancer. I’m also scared bc every time he has a bad report I do as well. I kid you not, every time. Neither of has told his mom, my grandma about our cancer. She is 99 now and worries about everything way to much. We didn’t want her to have to suffer. It’s now like omg will we even out live her? She is the toughest cookie I know. If I have something shorty going on I say if grandma can do it god damned it so can I.
I hope all of you are doing good!
Peace
Sara
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Hi, Sarah,
Glad you made it through another round! I start round 5 tomorrow. I also still have my original tumor and on the scan the edges were “ill-defined” and the doctor said the SUV was almost low enough to be in the normal range and not even need to be reported. I’m talking with a surgeon next month to discuss surgery. My oncologist has said it’s unnecessary since it’s spread but the original tumor has always been an issue for me. Every progression it has grown larger and more painful and then the medicine shrinks it until it quits working but it has never gone away. I want to see if cutting out would keep it from seeding new mets. I may or not go through with surgery but I at least want to feel sure about the decision.
I’m really sorry about your uncle. It’s hard enough to do this yourself but to watch someone so close go through it at the same time has to extremely difficult. And hiding it from your grandma!
I wish you the best, Sarah, with this conundrum!
I went to Disneyland yesterday and I’m exhausted today. Hard to get moving!
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Just a quick note. My wife had a similar situation. The Dr. left the tumor in. Suddenly a TNBC formed in the core of the lazy ER/PR+ and went wild. Contained for now by eribulin. Longer and more complex story than this but this is a quick reply. Wife hates internet, well except for eBay and Amazon.
MikeW.
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i was told the same as well about my tumor. It was to late the damage was done. My only reason for keeping it would be that they take samples and grow them to use for things like car T cell things. I do don’t want to miss out on anything like that.
Thanks
Sarah
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mike- how did you end up testing the tumor again? Does your wife still have it?
Thanks
Sarah
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skitzblitz here's the full story. Better get a cup of coffee before you settle down to read the whole saga.
I writing this for my wife as she hates the internet (except Netflix, Amazon and oh yes a Sudoku site).
She's a wonderful person and was diagnosed with ER/PR+ Her2- in Dec 2012. She had a large tumor in her right breast and a small metastasis on her spine.
She had AC but no Taxol as her first infusion caused an almost fatal reaction. She was also given Nuelasta but had an almost fatal reaction to that as well.
The AC worked for a time and reduced the main tumor and completely eradicated the met to her spine. She was given Afinitor/Aromasine but had a nasty reaction to them and was given tamoxifen. This worked for a little over a year but then the tumor in her breast sudden went crazy. She had an immediate mastectomy and lymph node removal.
Results of the operation showed her main ER/PR+ tumor to be 100% estrogen and grade 1, there was a second tumor inside the main one and was ER/PR+ 30% estrogen, grade 3. In 9 of her 19 lymph nodes removed was found triple negative metaplastic cancer.
Lifetime amount of AC and radiation seemed to take care of everything and was given tamoxifen. Everything was fine until, after about 14 months, tamoxifen failed with numerous mets to her spine. Also, her ER/PR+ turned to triple negative.
Next she was given Halaven (erubilin) and it worked for her. After six months of it she was NED. She was then off all chemo for 3 months but a PET scan showed the TNBC was back (small amount though). She's back on Erubilin again and, like all of you, are waiting for a medical miracle. Weird but maybe a dog parasite medacine might be worth looking into.
MikeW.
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hello Halaven ladies!
Looks like I’ll be joining soon but I’m really not mentally ready to go back to IV chemo with all its drama: neutropenia, hair loss and other side effects..Besides, I feel Halaven is my only real last option.. going there so soon means I'm nearing the end
Any words of wisdom?? How is Halaven for those who tried it? Anyone tried fasting with it? Any supplements that made it work longer?? Did cold capping work?
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thanks mike for the crazy story. I wonder if that is more common than we know to have two types of cancer in a tumor. I know they can change but I am now wondering when the take a sample how do we really know the whole tumor is what they say. I just can’t remember if they took more than one sample from breast tumor or not, from me. I did also have one from a hip bone and that confirmed the same, er+ pr- her2- .
I am shocked they took her off medicine. I was told from the get go I’d be on it for the rest of my life.
I will be praying for halaven to work for your wife.
Thanks for the info. Always good to hear stories of things you would never think of.
Sara
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nouzay0 - I have just completed round three of halaven. Scan early next month. So far not so bad. I have not lost my hair but just completed 7 rounds of ac chemo so this is prob less harsh than that. It’s growing slow but filling in. So, no cold capping for me. I think jfl did for the short time she was on halaven.
I get some joint aches and back aches and tired into my week off. Red blood counts stay good but whites tank by end of the off week. I do get neulesta the day after the first treatment and it lasts for ten days in the system.
I’m tired off and on. The halaven itself is fast, almost to fart. They mix mine in a small bag with fluid and drips in for maybe 5 min. Chemo is like me time and I don’t get any time now with this one! I’m in and out. It takes longer for the bloodwork.
Sarah
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I’m shedding again. It doesn’t happen with every cycle and it’s not a lot but my sink looks like I’ve been shaving. My blood test on my week off is so normal! It’s amazing the changes with chemo happen so quickly.
I hope everyone has a great day today! Dentist appointment and nivestym shot coming up and grandkids after school!
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Hi Halaven tribe, I'll be joining you in a couple of weeks. I was on Ibrance/Letrozole until February of this year, but honestly I think it started to fail around November. I had a sneaky esophageal met that didn't show up on any of the scans that reared it's head in a nasty way in February, landing me in the hospital. I just finished 3 cycles of dose-dense taxol and gemzar. Scan results were mixed - liver and lung mets are much improved, but bone mets kind of took off, so on to the next. MO said my options were Xeloda or Halaven. But since Xeloda depends so much on good absorption in the stomach and I have GI issues, she said Halaven is the better option.
NouzayO, I know what you mean about the fears of moving to a new chemo. My hope was that after the taxol/gemzar I could move to a hormonal for a while. But the bone mets precluded that. It's frustrating that I burned through that first line so quickly and now am on second line chemo. But MO says this tx should be easier than the taxol (which shouldn't be hard, it was rough.)
Sending prayers to all ~
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NouzayO, Jaylea, welcome! I was adding up my cycles and think I'm in the middle of cycle seven. I've been at it since January 2nd.
I find it "not as bad" as I expected. I have a routine now and know what to expect on most days. It can change somewhat if I'm traveling or doing something but after infusions on Wednesdays I do try to 'rest up' one day of the weekend.
Still go to work full-time. I hit the wall on Friday afternoon around 2:30 and just head for home.
The only meds I take are ibuprofen if I feel 'bad' plus the occasional Zantac and a whole host of senna.
I had a disaster my first cycle -- I had a cold when I started the cycle -- and all my hair came out. it's growing back, very slowly. I look like I've been to army boot camp. But once it gets warm enough I'm going out in public with the boot camp look. We did lower the dose so I only take 1.1mg/m2. That's much more tolerable.
MO and NP both said that having your hair come out was very unusual. Normally it thins out. Your experience may vary.
You can do this! If the 1.4mg/m2 causes you a lot of trouble ask for the reduction. My TMs have fallen like a stone. Scans are in three weeks.
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