Ixempra!

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Anonymous
Anonymous Member Posts: 1,376
edited October 2016 in Stage IV/Metastatic Breast Cancer ONLY

I had my first infusion of ixempra yesterday. Right now I am feeling happy and alert because of the steroid. I am expecting some serious side effects in the next few days, though, so any kind of advice/tip will be appreciated!

Oh, I also got Procrit for my RBC which was a little low, and I am scheduled for a blood transfusion in the next few days because my hemoglobin is at 7.2.

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  • Catesmom
    Catesmom Member Posts: 280
    edited July 2015

    Hi Adnerb, I've been on Ixempra for 3 months now. Doing fair with it. I'm anemic but my hgb is around 9 and my insurance won't pay for Procrit, but I'm too high for a blood transfusion. I think I'm just constantly tired. Mostly I have some level of nausea which is controllable with meds. The neulasta shots to keep my WBC counts are the ones that I find difficult. A lot of bone and body aches. The good thing is that the Ixempra is keeping my mets stable and have improved some of them. There are 3 different doses and I was started on the lowest dose. When they upped it to the next level I literally thought I was going to die. Horrible pain for 2 weeks, no appetite,severe weight loss. I'm at the low dose again of course...once was enough. I hope you do well with it. I find it mostly tolerable. Kelly

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  • diana50
    diana50 Member Posts: 2,134
    edited July 2015

    welcome to our little group. ๐Ÿ’ƒ๐Ÿ’ƒ. I have had three infusions and this last one last week was very different then the first two.

    Did you get neulasta shot for whites the day after chemo? Can make bones ache and I believe the Lxempra also causes serve body aches.

    My worst days are day 4-5. Then start to feel better. Takes 10-12 days and then body is better.

    I am not losing my hair. It's coming back after 30 taxols and eye brows too.

    Be prepared with prune juice for constipation and Imodium for the other stuff. Nsusea with this drug too day 2-4.

    I believe Lxempra to be effective. But it's a bit tough. My neuropathy had improved on Lxempra compared to taxol. Taxol ruined my feet but now improving. I think neuropathy is side effect of Lxempra but not as intense as taxenes.

    Keep us posted. Hope you do well on the drug. ๐Ÿ‘

    Diana

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  • Catesmom
    Catesmom Member Posts: 280
    edited July 2015

    Day one after chemo is my favorite day. Feel the absolute best. Hgb has started to creep up by that point too. I get my neulasta that day. By the end of the day I start feeling the body aches coming on though. That's partly why I blame the neulasta. My onc has me take Claritin and naproxen over the counter the day of chemo and the following 2 days. I do think it helps the body aches some. The infusion nurses say that some people have more help with that than others though. Diana, I do think the neuropathies are not as bad with the Ixempra. Haven't noticed any increase but they are still present from my original Taxol given 4 years ago. My worst days are 2-5 I think. Diana, you helped talk me off thewall with your 10-12 day comment to me when I was so miserable when they tried me at that higher dose-thank you. I hope you do well Adnerb. There aren't many of using this chemo, let us know. Kelly

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2015

    Dear Diana and Kelly,

    Yeah! We have a group! There's also someone with the username "scutters" who had a hard time on ixempra, kept doing it anyway and ended up having NED!

    Today I had my neulasta shot. Monday I get typed for my transfusion. Tuesday I have the transfusion. So far I only have the usual cancer pain (left hemithorax). But even that isn't so bad.

    Hugs,

    Brenda

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  • diana50
    diana50 Member Posts: 2,134
    edited July 2015

    oh. I just love love having our little group of Lxempra girls. ๐Ÿ’ƒ๐Ÿ’ƒ

    I am now at day 11 after infusion. Much better. Some pain lady night but today better. No more intestine or stomach issues. Appetite back. ^5. I have about 12 good days coming up until next infusion july 20. Don't give up even on hard days. Your body will recover. ๐Ÿ‘

    Let's keep this thread going. Will have a scan in month or so yo check on liver and kidneys. So far blood work good.

    Hang in my friends. POW ๐Ÿ‘Š๐Ÿ‘Š cAncer.

    ๐Ÿ˜˜. Diana. And a little of this.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2015

    Thanks for the cheer, Diana!!

    Today is day 3, so far so good, just a little wobbly and tired. Good appetite. This may all change tomorrow, right?

    Hugs to the group,

    Brenda

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  • diana50
    diana50 Member Posts: 2,134
    edited July 2015

    Brenda

    The steroid wears off for me by day 4-5. Side effects show up after steroid wears off plus the energy is "bye bye".( But ๐Ÿ‘ŠPOW cAncer !!)That's when I noticed nausea and either constipation or DiareahhA. It depends on how your body reacts to the drug. I am still learning. # 4 july 20.

    I kept fluids going. Soup really helped eith saltine crackers. Fluids and more fluids. ๐Ÿ‘๐Ÿ‘

    I will be thinking about you. If yoy notice pain in your bones (can be any bone..) it's most likely from neulasta. I don't know if you have had neulasta or neupogen but the bone pain is pretty identifiable.

    Hope this first infusion is gentle on you. Keep us posted.

    Diana

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  • Catesmom
    Catesmom Member Posts: 280
    edited July 2015

    Great advise Diana-keep hydrated. That has been the absolute hardest thing for me and I feel so much better when I am hydrated. Today is a great day. Good appetite. Drinking well. Day 10. Kelly

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  • diana50
    diana50 Member Posts: 2,134
    edited July 2015

    kelly

    Glad you are feeling better. Yep. Day 10. I am on day 11. Didn't realuze we were practically on same cycle schedule. Amazing how after 10 days feeling better. Kelly thinking the rads will blast cAncer out of your head.

    Brenda hang in.

    POW๐Ÿ‘Š cAncer.


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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2015

    Diana and Kelly,

    I had my first infusion 2 days ago (Tuesday). How many infusions have you had and when will you get a scan to check? I love this little group!

    Hugs,

    Brenda

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  • diana50
    diana50 Member Posts: 2,134
    edited July 2015

    Brenda I have had 3. #4 is july 20. I am currently feeling pretty darn good. Keep posted on side effects or questions.

    I love this group too

    Not sure when my next scan is but probably not until August or September. My TMs are good indicator for me. But want to give Lxempra a chance to work. My liver enzymes continue to be in normal range. The Lxempra makes alkaline phosphate elevate week after infusion but then it comes down. Learning to be patient and let Tx work. Always ask about magnesium levels and potassium. If low you need to supplement or get IV help there from doc. Hope Hemogloblin comes up. Google ways to increase Hemogloblin. A year ago I was at 8.4. Now 11.4

    Hang in. ๐Ÿ‘Š๐Ÿ‘Š pow cAncer

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  • Catesmom
    Catesmom Member Posts: 280
    edited July 2015
    Hi! I've had 5 treatments so far. I had a PET scan and brain MRI June 22nd. 3 months in. The PET scan results were pretty good. Lymph nodes improved. Bone, liver mets stable. Lungs slightly improved. My onc was happy with the results of course until it came to the brain MRI. I was found to have another met to my cerebellum and leptomenigeal mets which require WBR. I've only had 1/10 WBR because after the first one I had a horrible headache, all of my CT scans were okay though. We're going to try again Tuesday now that I am on steroids. They also think I may have had problems because it was close to the chemo, and I still was not feeling well from it, dehydrated etc. Am feeling pretty well now so hopefully..... All of my labs have remained fine, just anemic. Don't you love how I say just. Kelly.
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2015

    Kelly, I hope your RBC goes up and that you get to do your WBR without any complications. Is it okay to have both chemo and WBR? I thought you had to stop chemo to go through WBR. I also have something going on in my brain, but oncs want another MRI before they do anything.

    Diana, I'm glad to hear you actually feel good today!! Does that usually happen around 10 days after infusion? Pow, pow, pow!!!

    I feel like crap. I have the weird bone pain (I guess from the neulasta), a little cancer pain (left hemithorax). Time for a pain pill.

    Hugs,

    Brenda

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  • Catesmom
    Catesmom Member Posts: 280
    edited July 2015
    Brenda, I don't think they give chemo during rads but were trying to get the rads in between my chemos. My body was not happy though. I won't be getting chemo until I am finished with the WBR. I just hope I get through the WBR and maybe this little chemo break will improve my anemia, my appetite is already a whole lot better. Trying to put some weight on. I've lost about 15 pounds since starting the Ixempra, although I do think a lot of that is dehydration. The day after chemo now I'm going in and getting a liter of iv fluid along with my neulasta shot. I'm sorry you are starting to hurt a lot and I hope the pain meds work their magic. It seems pretty much how Diana and I have done with this chemo. I also think there is a bit of a cumulative effect with this drug too. You have pleural effusions too don't you? I think I had read that on another thread. (I read your posts a lot, so kind of feel like I kind of know you). Ixempa is suppose to work well for lungs I believe. Hang in there and feel better soon! Kelly.
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  • diana50
    diana50 Member Posts: 2,134
    edited July 2015

    Brenda. How are you? Side effects will be kicking in. Hope you have pain Meds for neulasta pain. Thinking about you. Remember you will feel better by day 10.

    Diana

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2015

    Giving up treatment and getting a pain pump sound very alluring right about now. Today must be my worst day. I usually don't take the pain med till I use the bathroom (tmi), but today I'll have to do the pain med first.

    Thanks, ladies.

    Hugs,

    Brenda

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2015

    Kelly, my pleural effusion is gone. In its place is something more deadly, pleural thickening. At least you can drain pe. Can't drain thickening. Mine is about 4.5 cm and it is pushing up my left lung and causing shortness of breath when I walk.

    Hugs,

    Brenda

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  • diana50
    diana50 Member Posts: 2,134
    edited July 2015

    Brenda

    You are in the really really hard days now Hopefully in 48-72 hours you will get to the other side of Lxempra side effects. It's rough. I spend two days in bed sleeping pretty much and this is the only chemo that I have had that csuses me to spend daytime in bed. Like 6 hours. Hang in. It's kicking cancers butt.

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  • Catesmom
    Catesmom Member Posts: 280
    edited July 2015

    Brenda, I'm sorry about the pleural thickening. I actually was going to have the talc surgery and when he got in there I had too much pleural thickening so I ended up having a decortication which is. Much more difficult surgery and left me with a lot less lung capacity. I wish now I had the talc surgery immediately because I am convinced it got worse because I waited to see if I would have a spontaneous pleurodesis with the aspira drain-which works about 50%of the time. I get short of breath with any exertion. I'm sorry this happened to you. It's not fun. Kelly

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2015

    Kelly, do you have oxygen to help you? My oncs think that my shortness of breath is due to the low hemoglobin, not the pleural thickening. I feel slightly better today, and I am looking forward to the blood transfusion on Tuesday.

    Diana, now I know what you mean by 2 days in bed. Glad to hear there's another side to this.

    I just met another lady on bcmets.org who has had 6 infusions and is right now experiencing major regression of her cancer!

    Hugs,

    Brenda

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  • diana50
    diana50 Member Posts: 2,134
    edited July 2015

    Brenda. You Will gradually begin to feel better. Fluids fluids and more fluids. I have soup for 3-4 days. To recover a little faster I think fluids really help. I tell my peeps " getting on the other side" when I begin to feel better. 10-12 days.

    This is a very hard chemo but I believe it will work. Often times they use it after taxenes stop working b/c cAncer learns how to mutate. The Lxempra will take care if those nasty cAncer cells.

    Remember you have more billions of healthy cells and fewer cAncer cells. Hope the blood infusion really brings you back.

    Kelly we are getting chemo same week I thibk. Scheduled July 20. ๐Ÿ‘€

    POW ๐Ÿ‘Š cAncer.

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  • Catesmom
    Catesmom Member Posts: 280
    edited July 2015

    Brenda, I have been on oxygen since September 24/7. The anemia makes it worse. That's awesome that the other woman on cycle 6 is having major regression. Awesome! Love to hear that.

    Diana, I think you and I are going to get farther away on our chemo cycles because I think I'll be delayed until the WBR is completed. Maybe it will give me a chance to improve my blood counts and help my breathing. I kind of hate to miss a week but I think both are a little too much. Right now I'm focusing on gaining some weight and HYDRATING. Really trying. Not easy for me. I normally weigh about 160# and am 5'10". This morning I was 137#. Scary thin. My clothes are falling off. I also started drinking ensure. I need to get healthier to Help fight this. Take care!, Kelly

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2015

    Kelly, I'm taking Megace for my appetite. I think it works, because it makes me want to eat, but I'm still losing a couple of pounds a week. Do you have the thickening around both lungs?

    My next chemo is on the 28th.

    Diana, thanks for the cheering!!! Pow!!! This morning I woke up without a death wish. I must have done something differently, OR my se's must be getting better. Oh, could my pain be better too? Is it too early to notice that? Day 7 for me and my saga continues.

    Hugs

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  • diana50
    diana50 Member Posts: 2,134
    edited July 2015

    Brenda

    you are getting over the really bad SEs. by day 10-12 you will be feeling much better. i journal on a daily basis to keep track of SE so i know what to expect and i can return to my days and months and cycle as time moves on. it helps me to know what i was experiencing on a daily basis so i don't get all discouraged as i go through the chemo cycle.

    gator aid is a good thing to drink; has some sugar in it unless you get low cal but also has potassium and for me seems to help on the bad days. i buy the Healthy Smart green cups of soup you can heat up in the microwave. i live alone (the cats aren't going to cook for me lol) and those microwave soups work. i also make stuff ahead and freeze so i have stuff on days i don't feel like cooking. trying to keep my strength up by walking 30 minutes every day; on bad days i only go 10 minutes . on good days farther. (i have a dog walking job so i am up early b/c we are so hot here in the desert. my mornings are generally pretty good; by 1 pm i am kinda done. i also nap pretty much every day. i think it helps my body heal.

    this is a nasty chemo isn't it? but, very very nasty to cancer cells and that is what we want.

    i lose weight the first 7=8 days and then i gain some of it back. just made chicken wings and ate some watermelon. i buy the already cut up mixed melon and watermelon has a lot of water in it.

    feel better Brenda and Kelly. i have my spinal puncture Wednesday as they are ruling out cancer in my spinal fluid even though they believe the lesion in my brain is B9 hopefully i can put that part of this ride to bed.

    take good care people.

    POW cancer^5

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  • Catesmom
    Catesmom Member Posts: 280
    edited July 2015

    Brenda, I have thickening mostly round my right lung where I had the surgery. My left lung has a drain in it, and it probably does have some thickening too, am just unsure how bad. My left lung is my "good"'lung I guess. I think my breathing is getting a little better, or it could just be the steroids I am on. Now I have Candida to my mouth and just started magic mouthwash to help clear it up. It tastes disgusting, but so is my mouth! Tomorrow I am going to have a WBR tx. Hope it goes well.

    Diana, I hope all of your tests prove to be negative. And you are right, this chemo is hard. I hope it's hard on the cancer too. I noticed both of you are also grade 3-so chemo can be more effective. I Hope. Kelly

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2015

    Kelly, I feel like the chemo is being hard on the cancer, too! My pain level is not as bad today. I woke up early so I can have an early head start for my transfusion. It takes about 5 hours for 2 units. You probably know that already.

    Diana, today is the 8th day and I am starting to feel better! No nausea, less pain!! Pow, pow, pow!

    Hugs to you both,

    Brenda

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  • Catesmom
    Catesmom Member Posts: 280
    edited July 2015

    Brenda, have a good transfusion. It is like night and day when you are so anemic. My hgb was 7 once so they gave me 2 units of blood and after the first one I was amazed how much stronger I felt-I could walk without dizziness!! I'm glad you are feeling better. Diana is very helpful with her way of getting you through those bad days. Thanks Diana! Sometimes it is so hard to keep positive.

    So for all of the food I've been piling in the last few days plus water I have gained 0 pounds. I was kind of surprised, I guess it will take longer than I thought but I feel stronger. WBR in 3 hours. My MIL is going to take me, she has a very calming effect on me. Thought she was a good choice. I think it will be better this time. Kelly

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  • diana50
    diana50 Member Posts: 2,134
    edited July 2015

    kelly

    Sending you healing thoughts on brain rads. I just know this will work for you. Hang in. It takes me about 10 days of eating after recovery from chemo to gain 3-4 pounds. Weird. I know. I am doing Ice cream cones and Brie cheese too. lol. ๐Ÿ˜˜ it doesn't come back as fast as it would when I was healthy. Lol lol.

    Brenda

    hoping by tomorrow after transfusion ๐Ÿ’‰๐Ÿ’‰ your red cells elevate and you will be feeling better. And as the days move you will keep feeling better. ๐Ÿ‘

    ๐Ÿ‘Š๐Ÿ‘Š๐Ÿ‘Š๐Ÿ‘ŠPOW


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  • Catesmom
    Catesmom Member Posts: 280
    edited July 2015

    Hi! Well, so far so good on the WBR. Feeling good. I hope it stays that way.:). Kelly

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2015

    Kelly, I hear that the WBR works even months after the procedure. Someone at the Brain Mets thread said she had WBR more than 6 months ago and she is still seeing her brain tumors shrinking. Also, some people have to wait up to 6 months to get their full energy back.

    Diana, immediately after transfusion my hgbl was already up to 9.9. If I waited 2 hours it would have been better.

    Day 8 was okay, I am not complaining.

    Hugs,

    Brenda

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