Halaven - Day 1
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Tomorrow will be my 2nd treatment of my third cycle. My liver numbers last week had dropped back to the normal range. I've looked through a lot of posts where the Halaven only worked for three cycles, so I'll be watching my numbers carefully!
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I know Kathy!!!! Some days I can walk around the house dancing, listening to music, or I'm totally wiped out . Kathy, if you dont mind my asking, why are you doing radiation and off halaven. Unfortunately, radiation wasnt an option for me. Dont be afraid...if you need conversation, anything, I'm here. Just post and let us know how you're doing.
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I finally received my 1st treatment of my second cycle on halaven yesterday. My MO switched my anti-nausea meds from Zofran to Emend, which seemed to help a great deal. I also got a shot of neupogen today and again tomorrow. As of now I am scheduled for my day 8 treatment on June 4th. (I asked to delay it for a work conference)
I feel very tired, and my hair is only just thinning. Which is frustrating!
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Eag, I spent a lot of time and energy fighting to get the eye mets radiated. Finally got my way, but one has to stop chemo before during and afetr because it enhances the sensitivity. Rock and a hard place.
In perspective, halaven has been the easiest chemo for me so far.
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Hey Halaven Ladies...its off to chemo for me this am. Day 1. Allergies have been bad overnight and yay, I get chemo today. Just wanted to stop through and say hello. Just when the fatigue was going away, I get to start all over!
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K-Lo,
Sorry I haven't been in here much but I do get emails letting me know what's going on. I have no idea any more who is on Halaven or not, but don't fret too much about having to stop Halaven to do radiation. You need to do what ever you can to stop the disease...I know Robin had to stop chemo a few times and do radiation. It just what needed to happen and the radiation did work for the areas that were rediated. Please remember that Robin had a particularly aggressive cancer and it was diagnosed fairly late (3b) and it just took over her body. She nor the docs could get ahead of the curve, but that in no way says that is what will happen for you. This disease affects people differently. Keep in mind that my Robin was African American and most African American's don't fair well with cancer or its treatment. It is a genetic thing. I might have said too much and now have scared the hell out of you, and if I have I am sorry, just know that you are doing well and things will work out for you with treatment.
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Hey Donese sent you a pm....how are you? So far I've had a long run on Halaven.a little over a year ...hoping I'm saying the same thing this time next year!
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eag,
I just responded to your pm...I am horrible at checking the posts. I will make more of an effort now.
I am doing okay. Some days are good and some are not, but that is to be expected. I am sooo glad that Halaven is working for you. It did for Robin for a bit.
I am glad I am back in touch with you guys again...I usualy park myself in the chat room because I am in to that instant gratification thing...LOL.
I'll talk to you soon,
Donese
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Donese, Halaven failed me but glad to hear from you. Sending healing energy and hugs to you and your daughter. i hope that you are able to do things that honor Robin and bring you joy. I lost a breast sister in april and i am glad her husband keeps her facebook up.
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penny4cats
I am sorry Halaven failed you. What are you on now, if I can ask? I have never thought of keeping Robin's Facebook up, but what a good idea. I haven't closed it so I will make a post on her account and tell everyone to keep in touch...there are pictures and all sorts of stuff on her Facebook that I am sure her friends would want to continue to see.
Thanks for the tip,
Donese
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i have been on afinitor/aromasin for 2 weeks wanted as much of the summer out of the infusion chairs as possible. when you have time send me a pm and i will let you know my name so i can see robin on facebook. i would appreciate it.
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Hey Bunker, if you see this I'd like to see Robins FB page...anybody else fatiigued?? not feeling well on this Memorial Day because of chemo???? I feel horrible....
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i had to go to urgent care today with 2 degree burns on two of my fingers on my bad side ie the one with no lymph nodes. learning to use my left hand for now. hurt like a bugger last night but when i saw blisters today said better go. silver sulfadiazine cream and fat gauze fingers. lol as i have lots of pain meds. tried my marinol finally at my son's and neighbor's insistence. no high just like an ativan feel but slept well. felled by an exploding sweet potato. forget eatinghealthy.. it isn't fun feeling crummy and staying in. i miss being able to be physically active. this disease ages us in fast forward motion. don't color my hair so qualified for senior meal no questions asked. maybe we should start a thread on read/watch this when you feel crummy. the reads on the book lovers list are beyond me most days i do miss my mind. hoping you're feeling better elizabeth. and i enjoyed meeting robin and donese via fb
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Oh Penny4Cats,
Sorry to hear about your burn! How did that happen?
I wanted Robin to try marinol, too. She finially did but it was only a day or so before she died and honestly I dont think she was able to tell much of a difference at that point.
I am also in on that thread on what to "watch"... sometimes reading is way to much brain power for most people when they are feeling crummy!
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Elizabeth...I am so sorry you are feeling bad. I will pm you and give you the fb page.
Donese
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Hey Penny4..I'm with you on that one...would love to feel as if today were actually a holiday and not just another day. Havent heard of marinol, but I hopeit helps the pain..be careful with the burn. Ok Bunker, and thank you.
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OK I'm here but mostly because I had a PET Scan today and that makes me nervous. It is sad how few people are on Halaven still. WHen i have treatment, and even today with the scan, i try to feel where it is working. For instance on my face where I had skin cancer, it always seems to get hot about day 3. I did have pain in my arm like someone had hit me for a couple days and the next chemo I swear that area hurt but hasn't since.
THis time I had no shortness of breath and was feeling so good decided to go to my son's for Memorial Day. I even drove for 2 hours and the next day couldn't function and had heartburn so bad. My daughter who took me said it was good I went just so they could see how my life really is. I finally signed up for home delivered meals (an advantage of being over 60) so hopefully my appetite and general health improve.
I thought I had it worked out with MO so i could go to reunion and got my plane tickets, but he wrote no notes so I will just have to tell him I am going on chemo vacation!
Time to get to bed, as it is 4 Am but i took a 5 hour nap this afternoon. My world is topsy turvy!
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Penny..... burns, oh the worst! But girl, hang on to that Silvadene, best thing in the world and it lasts forever. Ignore expiration date.
Donese, ty, your note re "being off chemo=okay" saved me.
Eag, I'm with you, Halaven is my buddy. Crossing all digits and extremities. I did have it decreased by 25% after first cycle for low ANC. Doing fine now, everyone in my world is cool with my naps, so, that's all it takes. Well, and ritalin, but in small doses!Edited to add: Working out, as little as 20 mins on treadmill and minimal weights plus stretching, makes my body want to move more. I know: "working OUT, are you crazy?" But doc says take whatever meds I need to get to gym, because it stops muscle atrophy and increases QOL.
Love to all,
Kathy
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Kathy,
I would encourage you to do what every exercise your body can handle comfortably. I agree with the doc. It will help with the muscle atrophy. One of the best forms of exercise is swimming. I am not sure if you have access to a pool but it is easy on the joints but also helps with tone, flexibility, and heart rate. It does help with movment in general. Even just 10-20 minutes is worth it. But what every form you choose, listen to your body and if it hurts stop...if it feel good continue. Pretty simple
Donese
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Hey Halaven Sisters...chemo last Thursday...so not feeling my best today. Had a family picniic this Saturday and Five relatives stayed at my house...they just left about an hour ago. I havent been exercising at all!!!!! I know I need to. Going to start walking in the am...if I only make it ten minutes I'mgoing to do it!!!
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Anyone else with lung mets, do you still exercise? Any fitness tips???
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Elizabeth,
Robin had lung mets as well. She was able to hike for a while but then her breathing became more labored and she quit because she wasn't having fun doing it anymore. My advice would be do what you feel like you can without over doing it. The idea is to keep your body moving and the blood circulating! Watch for signs of short of breath and when you become short of breath stop.
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I walk each morning and each night. Its made a good difference in how I feel. Lately, I've been bicycling too. Only flat rides, but I've been able to bike a half hour, its easier on my legs. Biking is the best.
My lung mets are stable, possibly not as bad as yours. Exercise does help in so many ways. I had to give up the gym, my daughter said to try swimming or water arobics. I honestly didn't feel I could keep up with water arobics, so I tried the bicycle and its been wonderful. Hardest part is setting aside excuses and getting on it.
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Thanks guys...at last scan mine were stable to. I'm just lazy and maybe a little afraid. I've been sedentary far to long. I'm due for another ct scan this month...so you guys keep me in your thoughts, prayers, etc! Soleil, how long have you been on Halaven?
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so my day one will be this coming Monday.
I am reading this thread.. my gosh, it is absolutely fascinating.
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Hey Apple..
Welcome to the Halaven thread. Really hoping that it works for you! I've been on it for about 14 months now..last scan I was stable..this week I havent been feeling my best. My allergies got the best of me this week, so I missed chemo today, which isnt a good thing..Ct scan again this month so I'm praying still stable.
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even though i stopped halaven in april did anyone have rbc/hematocrit/anemia problems from tx or after they stopped. i am almost at the point of needing blood transfusions. ok platelets and wbc.
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Havent reached that point. Dont know whats going on the pas couple of days. Fatigue has been off the charts. Also feeling weak. Didnt make it to chemo today. I know thats not a good thing at this stage.
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Gee, Penny, that's strange! My counts are good so far, 4th cycle day 1 today. They had to turn it down during the first cycle for low anc count. Check with Reesie re low red cell/Hg counts.... maybe there's something to investigate here.
Apple, I hope Halaven is good to you. I find it very live-able. But I'm a big rester!
Exercise is one of those things, for me, that I have to keep pushing myself to do because the fatigue is so much worse when circumstances take over all my time and I cannot devote the 20 minutes plus warm up, stretch down etc. But walking has become a pleasure. On vacation, we over-did it. Tendency now is to lay around to compensate; vicious cycle and all of that.
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K-Lo, I overdid the walking on vacation as well. When walking on the beach, it seems like you can walk forever.
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