Halaven - Day 1
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Shetland, you sound remarkably upbeat despite this recent setback. I'm so praying for symptom relief and an acceptable action plan for you.
Pajim, thinking of you and praying things are coming together.
I'm struggling myself. The neuropathy and muscle weakness is taking a real toll and I'm starting to worry about mobility. I'm particularly wobbly and weak in the knees (hello getting up from toilet). I've asked my MO for a phone appointment to discuss. I really hate to burn this tx, especially as it seems to be working, but if it means I've lost mobility then it's not worth it. On the other hand, would the next tx have similar risks? It's odd, on paper I look good, everything stable and no extensive organ involvement. In real life, I feel and move like a 90 year old.
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Jaylea - Oh no, it must be so disheartening, especially if you are feeling it is working at keeping the cancer a bay. It is one of those issues that separates us from the breast cancer “survivors”....quality of life. Of course we all want longevity, maybe even long enough to find the cure but.... Are you finding the weakness a cumulative side effect? I notice you started in June, have you had 3 complete cycles? I ask as, so far after only 2 injections I am noticing weakness too, however, I have been on dexamethasone for 2 weeks and that might be my problem. I so hope your MO consult give some you the answers you need.
May our tomorrow be better than our todays.
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Jaylea! I know the neuropathy is REAL and the muscle weakness is REAL! I’m sorry you struggle with them! I still have the neuropathy but it is not worse. I feel like I’m walking on rocks and around my mouth it feels like I just had a shot of Novocain. The muscle weakness has been the worse during the bad days. My mind has the will to do something but the body does not cooperate. The second week is so much worse than the first. If it’s working for you I really hope you can find a solution with your doctor to stay on it for a while longer. 🙁
Kayla, I believe the weakness is from the Halaven. I had dexamethasone as a premed for 6 or 7 cycles but still have weakness during the bad days after treatments. It lasts longer with each cycle.
I struggled a bit during yoga tonight. My muscles feel so tight in my legs I can’t touch the floor when I bend over and it’s harder each week. I’ve had high heart rate and shortness of breath before with other treatments but not the muscle tightness and weakness like this. Other than this I tolerate Halaven fairly well. I wonder if it’s because I didn’t have treatment for for early stage and have had fewer treatments? This stuff is so TOXIC that we put in our bodies and the permanent damage it does.
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goodness, everyone is struggling! I truly hope everyone (this means you Shetland) are having a better week than I.
I am still in the hospital in Barcelona. With not one but (count em) TWO fractured hips. My company is arranging for an air ambulance home, probably Wednesday night. Guessing I’ll get two partial hip replacements. One fracture is displaced and one is ok.
The care here is good but I wanna go home. Told my husband to stay put because he’s going to have to handle the 2nd hospital stay. One of my colleagues is here with me.
Stay strong my friends
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Kayla, yes, the weakness and neuropathy has been cumulative. I can see it in my checkbook. My handwriting has gone steadily downhill since early August. I'm on cycle 6. I agree with Wandering that it's the Halaven. My first indication of trouble was late July. I went to Starbucks to visit a friend. After about an hour of visiting, when I got up to say goodbye my knees buckled right out from under me and I dropped to the floor. After that I've been careful to steady myself and grab onto something or someone when I get up from a sitting position.
Pajim, I hate to say it but I'm afraid you get the award for worst week. OMG, two fractured hips. I'm glad the care is good and hope you're as comfortable as possible. Your DH must be a wreck, you being so far from home. Do Barcelona hospitals serve wine with dinner? Prayers for strength heading your way.
Wandering, thanks for the validation. Sometimes I think I can just will things to get better, to get my dexterity, energy, and strength back. So glad you're able to keep up with yoga, I'm sure it's paying dividends.
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Oh, pajim, this is terrible! Are the hip fractures from mets, osteoporosis, or both? An air ambulance is definitely the way to travel. I can't imagine your trying to make your way home on a regular flight. I'm glad you have someone with you.
Jaylea, I'm so sorry that cancer and treatment has caused you this weakness and neuropathy. Where do you find solace? Wandering, you too? Yoga has been a mainstay of my wellness program. Oh, dear.
I feel like I have crossed into a new, harsher place with the partial failing of Xeloda. I see it when I read what people on this thread are dealing with. I feel like from here on out my treatments will likely be more difficult, and my losses will increase. When will it take my dancing from me? I NEED a garden and must find a way to get some workers to make my vision a reality. I figure I will almost always be able to enjoy a garden, even when immobile or ill. If I walk to the window of my hospital room I can see butterflies and dragonflies in the sunshine.
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Aah Shetland, I feel the same as you. This is the first thing to go wrong.
What if it’s the first in the final series of things that go wrong? My MO doesn’t think so, but he loves me and will truly grieve when I die.
Here’s hoping that bionic hips can get me back on the golf course. I travel home on Thursday, no idea when they’ll operate.
Sorry it’s hard to keep track of everyone’s posts on my phone but I’ll read them all when I can get my laptop.
Additional thought for Shetland:Does your hospital have a garden? A lot of them do, somewhere. Can u go there?
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Pajim, I am just floored that you are lying there with two broken hips and still offering support to me. Wow.
Yes, “the first thing to go wrong”. Interfering with our lives in ways we simply cannot just push through. Ways that make us miss out on things more than before. Ways that require a break from chemo, and how scary is that. You need to keep golfing and I need to keep dancing. Yes, there are lovely grounds and gardens here at the hospital, and I have taken a walk outside three of my six days here. Once the nurse had to call me and ask me to please come back now as they needed to move me to another room.
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It's amazing how we're all struggling in so many different ways, yet find ways to support and encourage each other. Kayla, I feel so badly for you, coming new to this treatment and right now our little band is in the middle of a crap-storm. Know that many others have done quite well for quite some time on this tx.
I heard back from my MO on email. She recommends taking a month break from Halaven. I have a call into her to discuss (she's just back from a couple of weeks off so her schedule is nuts). I'm in favor of that, just want to understand what's next. Back on Halaven? On to something else? Mentally I'm doing ok. I find strength in my faith, my husband, and family.
Shetland, you said it so well. My "thing that went wrong" was the esophageal met discovered in February. Dealing with everything that entailed and the harsh chemo it took to get it under control, I realized I had crossed into new territory. I'm so thankful for the support here.
Mike, thinking of you and your wife and hoping for improvement.
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Grrrr, just lost a three paragraph reply. Stupid computer! I wonder if I can recreate the brilliance, lol 😂.
So, got home from Pittsburgh and just caught up. Wow, people, lots going on.
Pajim, nooooooo! Who could ever expect something like this, on a trip, in another country. Sounds like you are being strong and handling things, but come on cancer, how about a little consideration here. The good news is that you are in a major city with good medical care. There is a lady on another thread who lives in Barcelona, and she seems to get excellent medical care. I hope that is the case for you. And the air ambulance is a brilliant idea. I'm assuming that means you can receive pain meds on the way if you need them.
Shetland, again nooooo! It sounds like a challenging time for you, but you are remaining upbeat. I hope they get to the bottom of this and back on your way to gardening and dancing.
Wandering, I am glad that Yoga has been a help for you. For me it is walking and I do get grumpy when I miss a day. And it is sad to see the decline in distance that I can cover. This is the first year that I will be unable to participate in the Komen 3day 60 mile walk. The sense of inclusion and love and fraternity and support during that walk is an experience like no other, and walking around beautiful San Diego is very uplifting. I mourn the loss. So my goal is to participate in 2020 but change up the venue and possibly do Boston! We will see!
Jaylea, I am sorry to hear that this treatment is causing so much trouble for you, enough to have to go on a month long break. It can be a little scary to not have any treatment, but hopefully it will give your body some time to recover and rejuvenate. I have been lucky to not have experienced neuropathy so far, cross fingers, so I can only imagine how it must effect everyday life. I do have some weakness and am extra careful to watch where I am planting my feet. I have found myself doing a little lurching, so I make sure to try to navigate things like doorways, where I always feel like I could crash into the door frame at any time!
Mike, so happy to hear the PET showed decent results. We have to take all the grains of good news, don't we? I hope this points a way forward for treatment and strength for your wife.
I got home Monday and was in the big chair on Tuesday morning for round one of cycle three. Just squeezed in with an ANC of 1.4, and that was after 4 Neupogen shots last week, and a reduction in the Halaven from 1.4 to 1.1. Starting on another round of Nuepogen today which will hopefully keep the numbers elevated for round two next Tuesday. So far I'm feeling OK with just a small headache, but I'm still on my steroid high.
Hi 👋 Kayla
Hugs to all!
Donna
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Donnabelle, "Grrrr, just lost a three paragraph reply. Stupid computer! I wonder if I can recreate the brilliance." Yes, I know the feeling. Probably went to the same place where there's missing socks and keys.
"Mike, so happy to hear the PET showed decent results. We have to take all the grains of good news, don't we? I hope this points a way forward for treatment and strength for your wife."
Jaylea, "Mike, thinking of you and your wife and hoping for improvement."
Yes, getting better and better by the day. She goes about the house on her own, with the help of her walker. She's lucid most of the time except for dates and times. I haven't had brain surgery and I have problems with that too. I credit the Keppra, anti-seizure medicine. She was in a down hill spiral until she started taking that.
Meeting with her MO on Oct 10th to decide if she should continue with Halaven. I don't see any problem with that but you never know. I've seen lots of very bad-off people in the infusion room getting chemo. Nurse didn't get into the details but they've had a few deaths right there in the infusion room.
Good mood right now; just got back from spending money at COSTCO.
MikeW.
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I hope this finds everyone, even just a little bit better then yesterday . I am just blown away that you all are going thru so much and yet able to support each other ...I am honoured to find myself in such wonderful company and only find strength from your stories...you all are amazing!!!!
Pajim - the surgery, I'm sure, will be immediately upon your return. Hips are one of those dangerous breaks because to the femoral artery. I remember I had got a hip stress fracture my during a half marathon in Germany although because it was a compression fracture no surgery but I certainly got all the warnings from the docs . You sound so calm, you must be in unbelievable pain...I'm almost ashamed to share my story but I will just in case someone has any ideas.
I have had a couple of major pain episodes in the last 24 hours, I was visiting my Aunt, for a couple of days and unfortunately she had to witness the whole thing...I can't imagine having to watch someone in so much pain and not be able to do anything about it. At least I can moan, groan, switch positions, pace, curse etc etc but all she or my husband can do is watch. I'm back home now and settling in for the night with a full compliment of hydromorphone on board and trying very hard to figure out what's wrong, I'm at the point I need to know exactly what's causing this pain. My mets are liver there Is no fever, no jaundice, nothing other than this debilitating diaphragm/upper abdominal pain, it truly feels like I can feel the tumours growing.
Shetland - yes, a “harsher place" I think that is a perfect description. But we always seem to bounce back with the next treatment. I still think with halaven, we have some hope and for you maybe without Xeloda? I still can imagine a body being an able to handle two.
Wandering - I'm also finding cramping or an “almost cramping" in my neck muscles, have you come across this on Halaven? I usually only used long stretching routines when I was running but maybe taking up a beginner level yoga may help my future mobility?
Jaylea - I hope the break is also what you need, it would still scare me tho'. When will you know what the next step is? You don't have to wait for the next month to know, do you?
Donnabelle - welcome home! I am so happy your white blood cells are bouncing back as they should. Last Thursday I had the second of cycle 1 and today I lost an unbelievable amount of hair, I won't be a bit surprisedif it's all gone by the weekend, are you keeping yours?
All my best. Sorry for the long one tonight, hmm maybe I'm feeling better.
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Kayla, your pain symptoms sound similar to the ones that took me to the hospital. It felt like a tumor growing. It especially hurt if I engaged my abdominal muscles or took a deep breath. Spike from 6 to 9. Needed Vicodin. No fever. No jaundice. Blood cultures negative. A CT with contrast found what was likely an abscess on the left lobe of the liver. The theory is that intestinal bacteria used the stent as a highway and settled in an area of tumor scar/debris. So have they scanned you? You don't want to let any infection continue.
Right, Jaylea? We are watching our lungs or liver or bones, and then surprise, the cancer decides to interfere with the esophagus, or bile duct, or our mobility.
Donna, can you not participate in at least part of the walk that has meant so much to you? And get a ride for the other part?
Mike, I see a deleted post. What's up?
Pajim, safe travels.
Wandering, do you have a yoga teacher who helps you work around the problems and adapt the poses? Mine does, but I still sometimes tear up when I feel there are too many things I can’t do in a class. I should go to class tomorrow, but part of me does not want to go and explain why I can’t do twists right now.
Jaylea and I are both having a month off chemo. Me, because with an infection (abscess) my onc does not want to risk messing with my immune system. The new antibiotic seems to be working, as the pain is almost gone. And the radiologist could not see it or enough of it to do a biopsy yesterday. I escaped the hospital last night and will have a home nurse come once a day to do the antibiotic infusion through my accessed port. I am afraid she will expect DH and me to learn how to do it. Yikes.
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Shetland Pony, Well sometimes I get too chatty. This forum is for you ladies and I want to keep my "chattyness" to a minimum. In short wife is doing better, gaining weight back, walking around with walker and not sleeping all day. I think it is because she's now on Keppra, anti-seizure medicine. Oct 10th her MO will see her and determine if she is to continue to have chemo or drop her from all chemo treatment.
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Mike, cancer has no boundaries and neither do we. Chat us up all you want, if we can be of any help or comfort then it makes us feel better. So glad to hear there's improvement. We'll take that today.
Pajim is probably winging it home now. I must say, I don't exactly know what an air ambulance is, but I'm guessing a specially outfitted plane designed to accommodate medical needs. I hope you're being treated tenderly all the way home.
Kayla, oh no honey, so sorry you're experiencing the pain episodes. Engage your MO pronto and keep us posted.
Shetland, glad you're home and that pain is almost resolved. Do they just keep your port accessed through the course of antibiotics?
Donna, welcome home and I hope the labs stay on track for next week's treatment.
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Mike, I hope that you feel free to talk with us whenever you feel the need. I can only imagine how hard it is watching someone you love go through what we do. It takes a special kind of strength.
Kayla, I'm sorry about the pain episodes. Has it improved? I wish I had some sage advice but so far I have not had that severe of a pain incident. About six months ago, my tumors were pressing on things and causing back pain, but nothing Tylenol couldn't take care of. It's scary to think all of us are vulnerable to that level of pain. Scares the daylights out of me.
Shetland glad you escaped captivity! Sounds like things are getting better. Do you use lidocaine when your port is accessed? I swear by that stuff. Hopefully you won't have to access it yourself.
Jaylea, how are you feeling? Is the break helping?
Pajim, thinking of you today as you wing your way homeward and I hope the surgery goes well and you are able to update us soon.
Wandering, you may have me convinced to try yoga. I was a runner for 40 years and never bothered to stretch very much. Somehow, I managed to avoid injury despite that. But now I am wondering if yoga would help with balance. These meds do make me feel a little wobbly.
Let's all have the best day possible! Hugs!
Donna
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Pajim I hope you made it back stateside okay with minimal pain! You’ll need your strength for that surgery.
Donna, yoga is great for balance. If you feel unsteady you can use a chair or the wall to hang onto. There are a few people in my class who use a chair for some of the exercises but not all. What’s nice about yoga is you do what you can do; there are poses that have different levels and you can go as far as you like.
Jaylea, I hope the month off gives you some relief. A breather! Plenty of time to figure out what comes next!
Kayla, I get cramps when I stretch my legs before I get out of bed or when I sit for a while. My neck is often very stiff. Trying to move it around doesn’t move it very far. You could probably find some good routines on YouTube but a class puts you with people. I go to class because I probably wouldn’t do it on my own at home. Always something else to do.
Shetland, I have never talked to my teacher about my limitations but she always says to adapt the pose to your ability. She makes herself available after class but so far I’ve been able to do most everything. I skip some that require bending over too long because I get dizzy but it’s not bad. Most of the people in class I believe are my age or older (I’m 57) so not a lot of athletic 20-somethings. I go with friends who are in their late 60’s. I live in a small town with a large retirement community. This teacher also offers classes with a mix of aerobics and yoga but I’ve never been. My friend really enjoys them.
Mike, were expecting you to chat it up whenever you feel the need! It just so wonderful the keppra is helping so well!
I checked my bloodwork from Monday and my tumor markers are up. Up to now they’ve been a decent indicator of progression so maybe they are this time, too. I see MO on Wednesday and we’ll see if he’s ready to do something. I’ve asked about genomic testing and the piqray but he didn’t sound excited about either one so I’ll have to push a little more for answers this time.
Everyone have a great weekend! My granddaughters will be here for the weekend and even though I feel like crap I still love having them here. They are a lot of work but what kids aren’t
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Mike - I am so happy to hear there has been some improvement. I truly hope you feel free to type and type. For me it is definitely very important to hear from you...a perspective from our loved ones . I don't think there are many threads here that get to share a special connection.
Wandering - I'm sorry to hear of your markers...I know we're not supposed to rely on these to much but, like you, mine seem to be a close relationship.
Pajim - I hope you're resting on this side of the pond now...I hope your pain is being managed and that the surgeons are preparing for the best possible outcome for the hip surgeries. Oh my, I can't belive you're are going thru this? You are truly in my thoughts and prayers.
Shetland - a weekend home! Yeah! I hope you're more comfortable, not only being in your own home, bed, toilet etc but pain free too. I hope they have arranged a home nurse visit for antibiotics over the weekend...
Donnabelle - hugs back and here's to a great weekend!
Jaylea - hope more of your questions about treatment break and restart have new answer for your beforethe weekend.
I am out of the pain episode and it is controlled with my usual dosing. My hair is almost all gone in 48 hours. Eek. So, my theory...the Halaven did a heck of a number on, not only my hair follicles but, on the tumours themselves and maybe, just maybe, I experienced major cell death, I read some where, probably here on BCO, that this phenomenon exists and can even cause some major complications. I will definitely enquire next week.
We made it, here's to another weekend, better than the last
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Yes, Jaylea, they keep the port accessed for the whole course of antibiotics. The nurse accessed it and left the needle in place and covered with a film. Once a week they will swap it for a new needle and put a new film over it all with the tubing hanging out, and that is where DH and I must learn to attach various things in order to flush, administer, flush, and heparin lock. I hope my skin can handle this. The port will have been constantly accessed and the site covered for thirty days, I think.
Ya, Wandering. I go to the daytime slow or beginning yoga where most of the folks are older than I am. I agree with you that genomic testing should be done at treatment change. Has the marker been trending up, or is this a spike?
Kayla, that would be great if the pain meant dying tumor. When I started Xeloda I got big liver pain, big ache for a few days, followed by a dramatic drop in tumor marker. Drink plenty of water? I am hoping that my hair still falling out means cancer cells are still dying. I have to be off chemo for a month because of the liver abscess.
Mike, it’s good to hear your wife is having better days. Everything crossed for continued improvement.
Waiting for pajim’s report. Wishing you a fast and smooth path to recovery.
Hope you are still feeling ok, Donna, and without the headache.
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Hello All,
It's been almost a year since I posted on BCO. I needed a mental break from the sadness and losses and to step away and evaluate my situation. It's been 6 1/2 years since diagnosis of BC and stage 4 to boot. I've had numerous treatments, mostly very tolerable, but now I start Halavan on Monday October 14th. My last treatment, Verzenio did nothing for a year but let my bone mets increase and created a landing spot on my liver. So now it's time to go back to IV chemo. Something I said I would not do again, but here we are.
I admire you all for your strength and fortitude but most of all, your willingness to support and uplift each other despite the difficulties.
I just want to say hello and thank you for your personal stories some of which are frightening but many of hope. My hope is to continue a good quality of life. To enjoy my husband, adult children and 7 grandchildren. To care for and ride my horse, to travel and to continue with my commitment to church. Like everyone else, I hope Halavan is good to me and it kicks the cancer back. I'm not ready to say good-bye but then again, who is?
Blessings to you.
Amy
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Amy, welcome. Feel free to post or just read along and we'll be here to support you all the way. Wow, 6 1/2 years since dx, that's impressive! Glad to hear the treatments have been tolerable, and there's every reason you'll find Halaven doable, too. Once you settle into treatment you'll be enjoying your life as before, family, horse, church, and all. Sending love across the miles.
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Thank you Jaylea!
I can hardly believe it's been so long and yet it feels like yesterday. I am truly blessed to have lived so well with tolerable side-effects. I hope Halaven is the same. I am rooting for you all.
Amy
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Welcome Amy! I know how you feel about having to step away and maybe get some new or different perspective on this whole scary journey. I took a 4 month break myself, over the summer. I was lucky enough to have a break in treatment, so I put BC on the shelf (mostly) and had a great summer with family and friends. Luckily, it did not adversely effect me too much. The liver tumors grew a bit, but hopefully the Halaven is beating them back again. I am on cycle 3 right now, and have found that it seems to be getting easier. Mostly fatigue for me. And low ANC counts which we are trying to stay on top of with Neupogen.maybe I’m crazy, but I feel like this treatment may be working. I can feel two of my tumors, and maybe I feel like they are shrinking a bit?! But I won’t get excited till my next scan, probably sometime in November.
In the meantime, I had some energy today so up went some Halloween 🎃 👻 decorations! Here’s a sample .
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A welcome from me too Amy...
I’m sorry you have to jump back into the idea of IV chemo. I also was very concerned. My first IV back was Navelbine, which destroyed each vein it entered, but we switched to Halaven very quickly and it is a fast in and out of treatment day. I’ve only completed my first cycle but for some reason, I think I might have success with this one.
For me, the first noticed S/E, I needed a nap three days in a row, but none since. Basically, fatigue, some joint pain and weakness and my hair started falling out this Tuesday and I needed to cut short today with bald spots; I am curious to see if I go completely smooth like way back in 2013/14, but no matter. I am hoping it gets easier and you’re only 1 cycle behind me,so we got this!
Looks great Donnabelle.
Best wishes to all for a comfortable and peaceful night.
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Thank you for the warm welcome friends. I love your Halloween decor. I think I will take advantage of my current energy and do the same before I may not have any.
Take care -
Amy
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Amy, welcome!
I am much more comfortable in the bed in Boston as opposed to Barcelona. And write a dissertation on the cultural differences between medical care in Spain and the US. The US doesn’t always win. . .
The trip home was long, more for the others than me. I slept through most of it. Then, of course it’s the weekend so can’t get much done.
But now we have a plan. Right hip is not fractured. Tomorrow they put a rod into the femur to stabilize. This will be followed by radiation.
Tuesday they do a partial hip replacement on the left. Then I start rehab on Wednesday. The hope is the pain on the right is due to the muscles trying to keep the right hip stable. If not this could get real interesting real fast.
So anyway, I’m about to go under for a few days, maybe a week. Wishing you all the best with no pain and no SEs in the meantime. . .
Pam
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Pajim - I am glad you are back in your hometown. I wish you well for your surgeries and the unbelievable recovery, you are going to be facing. It blows my mind! As you find yourself going off grid, so to speak, know that you are in our thoughts and prayers.
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Pajim, great to hear from you. So glad the right hip isn't broken, and there is a plan to stabilize. It amazes me that you're to start rehab a day after surgery. You're exactly in the right place to get fixed and heal up.
Kayla, did you end up getting a port to save your poor veins? I was very late to that party, only got mine 4 months ago, but am thankful every time it is accessed.
Donna, we love Halloween and you've done it up right.
Mike, thinking of you and your wife and hoping things are still on an upward trajectory.
Shetland, hope you're adjusting to the antibiotic schedule and feeling good.
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Welcome home Pajim. Sounds like you are in a place where you will get the best care. I hope you can get through this as easily and quickly as possible. Positive thoughts are flying across the country for you!
Hello to everyone! Decent day today, I even made dinner. Since being around food sometimes makes me want to barf, I’m kinda happy with myself. Have to be to the infusion center at 8 tomorrow to see if my ANC is high enough for round 2 of cycle 3. Fingers crossed 🤞
Hugs, Donna
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So it was a good day! Was able to get chemo even though the ANC was 1.1. Had an appt. with my MO who I love and is my favorite doctor ever. She seemed pleased with how things are going on Halaven. Since I am slender, I am able to feel several of my liver tumors. She took a feel and thinks that the main one is not as prominent. My opinion is that it definitely hasn't grown, but not sure if it has shrunk significantly. Also, I am feeling no pain from the tumors. It's semi good news that I will hold on to until the next scan.
Hope you all are hanging in there and had a good day!
Hugs, Donna
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