Halaven - Day 1
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Shetland, with your fever climbing like that, I'm glad you checked yourself in, as much of a pain as it is. Now they can do all the care and you've taken yourself out of the "should I or shouldn't I" position. I did have a couple of episodes of fever early on with Halaven. Just one night, probably around day 2 like you, but always leveled off at about 101. I took a couple of Tylenol, went to bed, and decided if it was still there in the morning I'd go in, but it always broke before morning. You're in a totally different place, though, with two chemos and a stent to worry about. Sending you massive waves of support.
Kayla, glad to hear the tx isn't too rough on you. Keep on icing!
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Right you are, Jaylea.
A fellow came by to see me here in my hospital room. I think my onc is mentoring him; he was up on my case. I know I have to get the stent changed soon. And the lesion on the right has grown larger fast. This cancer is a different beast than it was. Kayla, I think my onc will indeed be on it Monday. The fellow said Monday morning my onc will consult with a team that includes the liver/biliary specialist, the endoscopy specialist, the radiation oncologist, etc. And someone, I assume my onc, will talk to me Monday afternoon.
We talked about why the fevers and he brought up how they happen after my infusions. Yes! Thank you for noticing. Bottom line, he thinks two chemos are just too hard on my body, and my immune system etc. are not optimal because of this. I think he has a good point. Am I exercising here in the hospital? Am I cooking healthy meals at home while exhausted? How much can a pony bear? Well, actually a lot, but we have our limits. My spirit is fierce but my body, not so much. I am not to start my next Xeloda cycle tomorrow. I also wonder if we will do a different chemo than eribulin.
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Shetland - oh how wonderful to have access to a Fellow...I am relieved that this has gone this way for you, rather than being filled with antibiotics and sent on your way.
Yes, indeed, what a fierce pony you have turned out to be! I had a horrible time on Xeloda, my hands, feet and mouth were raw, and so far I’ve had three naps in three days on Halaven, I haven’t napped in years! And your poor body is trying to manage both? I can’t imagine.
Jaylea - yes icing will be a necessity for me as well.
Donnabelle and Pajiim - safe travels to you both
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Shetland - I am hoping you got to consult with your doctor today and get some answers. Please let us know. My MO told me that my body has been so heavily treated that it is just not recovering as fast as it used to. Hence all the low ANC readings. Right now I’m feeling ok after treatment 2 of cycle 2 last Thursday. Actually was able to do a five mile hike with my son yesterday, although I was a puddle of mush for the rest of the day! I have had 3 Zarxio shots and one more tomorrow before I leave for Pittsburgh on Thursday. I just want to have some energy for the trip.
Kayla, I am hoping your body adjusts to the Halaven. I was a fatigued blob after my first treatment, but did much better after number 2. Of course, my dose was lowered to 1.1 so that has probably helped.
Olé Pajim! 💃
Jaylea, hang in there girl! Not sure where you are in CA, but I hope you are having the glorious weather we are experiencing!
Hugs to all!
Donna
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Shetland, I'm so sorry you had to spend the weekend in the hospital. Ugh. But I hope you're feeling much better today.
I head out for Spain tomorrow night. See a PT in the morning. Hopefully THE PT. LOL.
Meantime they have diagnosed an ear infection and I've got drops. Right now I can't hear out of my right ear. Hoping this will clear it up. I'm just a wreck. And I'm starting to get cranky about it. But if lo I can hear again that might make me feel better.
Donnabelle, I couldn't do a 5-mile hike if you paid me! Even without the leg. 2 miles was my limit earlier this summer.
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pajim - I sure hope your infection clears up, flying just might be a little hell of its own when it comes to ear trouble, you'll be in my thoughts. I don't know how you possibly can be doing all of this, it amazes me. Work last week, and travel this week, with your leg being as it is...I think you do a 5 mile hike too. Have a wonderful time.
Donnabelle - very inspirational on the hike. Here's hoping you ANC recover and this treatment is doing what we all hope it will.
Today, I think I'm running on pure steroid...I've been cleaning most of the day and have no need for a nap; it will be interesting to see how injection #2 effects the energy level on Thursday. I had a breakthrough pain episode yesterday but pain is under control today, so all in all, Halaven has been an easy transition.
Shetland - thinking of you and I hope everything is going well. Look forward to your update.
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Sounds like our Halaven crew is getting knocked around a bit.
Kayla, what is the source of your pain and what are you taking to keep it under control? I just weaned myself off a fentanyl patch and am always looking for things to put in the arsenal.
Pajim, hoping for good chemistry with PT and fast acting ear drops.
Donna, I'm in the SF bay area and in day 2 of a massive heat wave. I stay indoors in a/c comfort, but it makes me cranky.
Shetland, I hope the consults gave you some answers and a path forward. Post when you can.
Hugs to all, JL
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My wife recently had to go to the hospital via ambulance because of another seizure. She was sitting on the chair of her walker and started shaking all over and foaming at the mouth. She was gulping in air with fish mouth like gulps. 911 call and off to the hospital she went. Most of her blood work was good. They found low potassium, sodium and one kidney operating at 20% and pumping urine into her blood. An MRI showed no cancer present in the brain, however it found areas of scar tissue. This residual scar tissue was probably causing the seizure they said. The medical staff was stunned she hadn't been put on anti seizure medicine already. She now has a prescription for Keppra, Vitamine B1 and the antibiotic cefadroxil.
She has a PET scan Friday. Her MO has taken her off chemotherapy (Halaven) because she's too frail. I fear that if they keep up this "no chemo" policy she might not last long. This is so frustrating as Halaven has worked so well for her in the past. We don't know if it's still working or not. Even if it's working perfectly still no chemo treatment.
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oh Mike I am so sorry to hear of your wife’s latest seizure. Although I am new to the Halaven thread I did read back a few pages and saw a bit of your background. With each delay in treatment over this past year I have had, I experience frustration and doubt...I’m truly hopeful her MO is making the best and most importantly the right treatment choices. Please keep us posted.
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Kayla250. Thanks for the concern however. "I'm truly hopeful her MO is making the best and most importantly the right treatment choices." His treatment choice is no treatment."
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mike3121 - yes, I see what you’re saying...I am sorry, I was assuming that it was a temporary no chemo plan, I didn’t realize it was the the whole plan...I hope someone can give you a clear explanation as to the MO thought processes.
Jaylea - they haven’t given me definitive reasons but my major pain episodes coincide with major progressions, so liver capsule stretch is one reason also one of the tumours is at the dome touching the diaphragm and as of last scan ascites but that is discomfort. Main is hydromorphone contin with an immediate release for breakthrough pain, this month they added dexamethasone for inflammatory responses and I think that’s the one helping the most at this time. I was too scared to try the patch, how did it work for you? MO is confident Halaven will get things under control.
Wishing everyone peace and rest tonight, may our tomorrows be full of answers
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No treatment is because my wife is too frail, lost a lot of weight (weight loss stopped about a week ago), twitches, mumbles and not coherent. MO feels chemo might be too much for her and even kill her.
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Mike, such very sad news. I sincerely hope hospice care can improve things enough for your wife that you two can yet have some good moments together. Sometimes less is more. In any case, sending you support.
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Mike, I’m so sorry to read about your wife’s seizure. I hope that the Halaven has done a good enough job that she can be treated for her other issues without progression. Good bloodwork is definitely a plus! May tomorrow be better than today.
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Mike, I'm so sorry to hear this latest setback. Hoping you get all your questions answered and that your wife is comfortable.
Kayla, it's hard to say how the patch worked for me. I was having sternum pain from an esophageal met and that's what put me on the patch. Over time I went on autopilot and didn't think too much about it as I changed it every 3 days. Then one day I realized that since my esophageal met had resolved at least enough to eat, that maybe I didn't need the patch. It was a drawn out effort to get off it as it's the equivalent of 25mg of morphine a day. I bridged with liquid morphine, lowering every 4th day by 5mg until I was off it completely. Knock wood, I don't have pain currently. I don't notice a huge difference alert-wise being off it. But I wouldn't hesitate to go back to it if pain was an issue.
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Mike, I am so sorry to hear about your wife's troubles. Being frail is something that I worry about. After such heavy treatment for so long, it does take a toll on our bodies. Keeping weight on is difficult for me, yet I know that it is so important. It is hard to eat when appetite is nil. It does sound like you can hold onto some positive news with the good bloodwork and the no cancer in the brain. I pray that things turn around for your wife. I hope the Keppra helps.
DH and I successfully made it to Pittsburgh. Good, on time flights. I have had a little more energy lately due to introducing caffeine into my diet! My MO suggested it and darn if it isn't working. Funny how things change I used to not be able to tolerate any caffeine, it made me shake and my heart race. I guess coming from such a deep well of fatigue is the difference of how my body is processing it.
Shetland how are you feeling? Have they made the decision to stick with one treatment? Sounds like you are going through so much. Hang in there, pony!
Kayla, hope your second treatment went well and the SEs are minimal. Good for you to get the cleaning done!
Jaylea, hope the heatwave is over. Fire danger is high and I worry. We had a brush fire two days ago that was about five miles from us. Luckily, our awesome firefighters got it under control quickly, but it is always so scary to see those plumes of smoke.
Donna
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Donnabelle, thanks for the concern. Yes, the Keppera has helped already. Still the night rages with her moaning and groaning and babbling incoherently. Important PET scan day. I've had her up and about, using her walker more (me, the bad nurse Ratchet making her walk around). She's maintained her weight so far, well at-least stopped her continual weight loss. At some point her MO has to be convinced to put her back on chemo. If he refuses well maybe a different health provider. Kaiser Interstate Oncology, Portland, OR has been great for her so far; I was surprised they seemed to give up on her so quickly.
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Greetings from the NEJM Group booth in Barcelona! Lots of oncologists here, LOL. Good food here, good wine, sore body. Zero trouble getting here.
Mike, I'm so sorry about your wife. It may be that the docs feel that if she's just having seizures all the time she isn't having any quality of life. What you likely need is for that seizure med to take hold. I hope the PET scan results are good!
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Pajim, glad you got there okay. Don’t work too hard and I hope the soreness goes away so you can enjoy your visit!
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Yay,Pajim is in Barcelona! Glad you made it and can't wait to hear more about the good wine and food.
Donna, what do you do to work around the low appetite? It's a constant struggle for me and I'm always looking for tips. I've concocted a pretty calorie-dense power shake, but I'm getting kind of tired of them.
Shetland, thinking of you and hoping you've got some answers.
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Pajim - Great to hear that your trip was trouble free but it still must have been hard on you. I would love to sit and have a nice red with you, enjoy to your fullest!
Donnabelle and Jaylea - I cannot help on the appetite issues, I have always had the opposite trouble, mine in insatiable. Coupled with the steroid, I have become quite plump, no one would believe I was on chemo, just need to keep the hair. But all kidding aside, maintaining a good weight is crucial for those times when the body is fighting infections and, well, fighting everything.
Mike - I also hope the PET scan results are good.
Shetland- you're in my thoughts.
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PET scans were good, considering my wife has only had about 4 to 5 Halaven infusions since mid February. Starting in February she got 3 months off, no chemo. Then 2 infusions before her seizures in Mid-May. Mess ever-since due to brain surgery and WBR, with only 2 to 3 Halaven infusions since.
PET scan showed mixed results; (all bone mets) some progression yet some areas showed cancer receding.
She seems to have improved quite a bit since she's been put on Keppra for seizures. Last night was the first night she slept right on through. Maybe, just maybe, things might get better for her. Praying, crossed fingers and knocking on wood.
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Mike, that’s great! Glad to hear she slept and is improving! Hope you’re getting some rest, too!
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Mike - I am so glad she was able to sleep. I can’t imagine having to go thru this with her, you are amazing. I, too, hope you are able to rest. Thoughts, prayers, and fingers
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I’m sorry to report that the world has crashed in. My other leg has gone bad. Hideous pain when I try to move it.
I can stand and sit, luckily. Just can’t get from one to the other. (TMI but think toilet seats. . .)
I’m in the ER in Barcelona waiting for the trauma surgeon to read the X-ray. ER docs say nuttin there. And I have a plane ticket home tomorrow. It’s going to be seriously painful getting home.
Got oxy but this is acute pain. I need a nerve block, lol
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Oh, no! I hope you quickly get some relief! Maybe the trauma surgeon will have more empathy than the ER docs and give you something strong enough to handle that pain while you travel home. I’m really sorry this is happening to you
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Oh, Pajim, I hope you get some pain relief pronto. That will make everything easier as you trek home. Sending prayers for travel mercies, and some answers on what is going on.
Mike, amen to a good nights sleep. Let's go for more.
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Pajim, Oh no! You've always been such a determined traveler, adapting and keeping on, and it's just not right for this to happen. Maybe you will stay in the Barcelona hospital until you know you can get the right pain control for travel. Trip insurance with medical transport? I'm sure it is an added stress to be far from your own medical center and doctors. They will communicate with Barcelona, right?
Here is my overdue update. I am in the hospital for the fourth time since July. This is Day 4 of my captivity. The first three hospitalizations were for fever, and only the first time do I believe there might have been infection, near bile duct stent. The other two fevers I think were induced by Halaven. But this time I came in because of abdominal pain, upper inner left. If I moved the wrong way it would spike and make me cry out. Getting in and out of bed was difficult and painful. Chairs/toilet also (sympathy, pajim!). I had to get help and try to use only my arms and legs and not engage my abdominal muscles. Had to take Vicodin. Long story short, a CT showed probable abscesses on left lobe of my liver. Although it could be tumor. Waiting to hear if they will attempt biopsy. Too small to drain. So I am on IV antibiotics AGAIN. The infectious disease specialist went over the whole history and prescribed a switch to a new one that I am happy with. She agreed with my concerns about antibiotics that can cause neuropathy or muscle/tendon/joint problems. The only thing is, this one is only IV, so when I go home a visiting nurse or my DH will have to inject it through my port once a day. How will my skin survive four weeks of being accessed and taped? And I suspect they will continue to withhold my chemo, which frightens me. My onc gets back tomorrow. I advocated for myself and am only hooked to the IV for infusions, then I get a flush and heparin lock. No way I could bear being tethered to the pole; that would have been torture, especially as the constant drip makes one have to get up and use the bathroom constantly. The pain has diminished, though it is not gone.
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Donnabelle, what a clever doctor to recommend caffeine to you. I’m glad it is helping and you get to enjoy coffee or tea guilt-free.
Mike, so glad to hear of each little improvement. May they continue
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Pajim - I am so sorry to hear your latest struggle, and for it to be the other side is just horrible. I truly hope that the pain relief plan is put in place for your return flight. I am in awe that you could even put an “lol” at the end of your post. Wishing best case scenario home.
Shetland - I am thankful to hear from you. I’m sorry you have had a such a hard time this past week. Pain episodes that put me in the ER have been my worst experiences since diagnosis, because all they do is load me up with morphine and send me home, even when I presented with a fever and pain. I hope your sentence at the hospital ends soon and I sure hope treatment can continue as soon as possible.
I know I’m new to the tread and have no experiences that can compare to the hell you all are going through right now, but I do want to thank you all for sharing the ugly truth of this disease because it shares your strength and grace
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