Ixempra-My experience
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Hello Ladies, my name is Marla and I am joining this discussion on behalf of my best friend of 20 years, Sally. Sally, 46, has been on Chemo (every single one of them) for the last 5 years. 2 years ago she developed Bone Mets and they spread quickly throughout the spine, pelvic & shoulder. Up until 6 months ago she was pretty active and had the pain under control.
When the pain and quality of life became unacceptable we looked to radiation to reduce the tumors in the spine and therefore, hopefully, relieve some of the pain. When we had the MRI done a 2.5cm brain tumor was found behind her left eye. She decided to go ahead with the radiation to the spine and full head radiation. That girl is so brave.
She is now on Ixempra. Her onc told her this was her last option. I am so grateful for this post and I stayed up very late last night reading every single page. It is encouraging to see that the SE's are lessening for most of you and the tumors are shrinking.... YEAH!! She is very weak now and because of your postings I am going to suggest to her onc that he look at reducing the dosage (her 2x is tomorrow).
The other SE that she can't seem to get control off is Acid Reflux. We are not sure if it is from the radiation or the Chemo and she is taking Previcid, but not much relief. Any suggestions? Any other help, tricks of the trade you can offer is greatly appreciated. God Bless you all, you are very brave, couragous women and I truly am inspired by each and everyone of you.
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I've read many of you did not have hair loss on this. Mine is starting to come out. Did anyone have complete hair loss or just thinning? Severe thinning? My onc said my hair might thin out but she minimizes SE. I had 1 round three weeks ago and two days ago I notice some heavy thinning. Been bald twice not looking forward to three but I have my wigs ready.
Thanks,
Patti
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4Sally,
I have also had the acid reflux. My chemo begins with a premed of an anti-acid... I think it's Prevacid also. I continue with the daily dose of oral Prevacid after chemo. But what I have found to help the most is to eat yogurt and drink milk with my meals. The dairy products help to neutralize the acid and coat the stomach. I'll drink a small glass of 2% or whole milk before my meal, and that usually puts the fire out. I'll drink another glass before bedtime.
Hope that helps- good luck!
Susan
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Oh, and Pattih,
I unfortunately had total hair loss...yet again. My Onc also said I may not lose my hair on Ixempra. This is round 3 of baldness for me, so yeah, I know what you mean. My hair fell out at about 3 weeks. I remembered losing my hair on day 17 before, so thought I was in the clear... but no. You'll look great, even with wigs...
Oh, and cross your fingers 'cause I think that last night I felt a tiny bit of fuzz growing back...so maybe the complete baldness is a temporary thing and we'll get it back while still on tx. That happened to me on Taxol.
Susan
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Susan, Thanks for the heads up, literally.
Patti
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4Sally -
You might want to try Nexxium or Protonix for the Acid Reflux. I've been on chemo & hormonals off and on for over 4 years, and have had to switch acid reflux medications several times. The Prevacid worked well for me, but the Nexxium works even better - and my medical plan charged me $30 for the Prevacid and $0 for the Nexxium. The onc may have samples.
I also found that Extra Strength Tums worked quickly for really bad bouts of acid reflux - but didn't last long - but a good stopgap.
Good luck to your friend Sally -
Lynn
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Pattih,
I also lost most of my hair. Though I've had fuzz return, it's spotty. So I keep my head shaved regularly and use my wigs or hats. I have full support from everyone around me. It really is a small price to pay to stay alive. I hope this doesn't sound cold or insensitive to you in any way. Keep up the good fight!
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Lifeline59, It's cool, I'm not sensitive. I was asking more for logistics. I have young kids and I'm trying to figure out waterparks, amusement parks and swimming pools this summer. Yeah I'm ambitious but determined to do this stuff. I just don't want a wig/scarf to fly off and embarass the 10year old or have the six year old laugh his head off at the wrong moment. Then there is sunburn! Yikes. DH said he was acutally getting used to the bald/shaved me. What a trooper.
I'm just in the begining rounds of Ixempra/Xeloda so far SE's are minimal but from what I"ve read can show up at any time. THanks for hte feedback.
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For acid reflux, I take nexium and also I take Gas-X after dinner. Zantak is part of my pre-med at the infusion and I always have Tums handy for a quick fix. (I feel like the queen of reflux).
I've been on Ixempra for a couple of months now and still have most of my hair. I don't know why. I'd like to get a cut and style, but don't want to bother if it's going to fall out, I have had it all fall out once on another chemo.
I wonder if the side effects of Ixempra are doable for me. The worst being fatigue. I just go from the couch to the bed for a few days after infusion and just when I'm feeling peppier, it starts all over again. Depression seems to be starting and it's not something I've had before (I mean serious depression). I have been depressed before but never considered taking anything for it. I'm going to ask about reducing the dose, but I think we've already done that. Good luck to you all.
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I take Nexium for the acid reflux. Seems to do the job for me. The milk comment I agree with. It does help fend off the reflux. Sometimes I have a few bites of vanilla ice cream and between the coolness and the coating it seems to help also.
The fatigue seems to be the main side effect for me so far on the Ixempra. I do notice that my legs don't ache nearly as much as they did when I was on the Taxol.
Girls ..... soak up as much sunshine as you can! Spring thank goodness is almost here and the sunshine is so good for us. Take it in as much as you can!
Debbie
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Hi All,
I am new to this.
I read all 11 pages of all your wonderful messages. I wish you all the luck and hope you all are victors of cancer. My mother is the reason i am writing this for. She was first diagnosed with BC in 1997. She had a masectomy in the right breast. and 6 months of chemo and radiation. The cancer was gone and she has been cancer free for 12 yrs. She was on Tamoxafin for almost 12 years. Though in a very reduced dose in the last 4 years. She stopped her Tamoxafin in Dec 2008 and the fisrt sign of cancer was early Jan 09. She developed ascites suddenly. She is in no pain but has gotten very weak. She Needs to be drained every 5 days. The Ascites is malignant. And it has metastatesied from the breast . It has spread a lil bit to liver. She has tried all chemos . xeloda then carbo/ gem and taxol. Now as nothing has worked they want her to try Ixempra. But they said it is a very risky chemo. They want to do it in the ICU so that she is monitored properly. I want to know if anyone has had ascites and if it is worth doing this ixempra as there is no cure for her condition( Malignant Acites) they may only slow the cancer down. But i Dont want her condition to get worse. What ever little time she has left i want her to be happy and in no pain. Let me know if you guys have any views.. thanks
nanai
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I have my 3rd treatment of Ixempra in a week. I have it every 3 weeks also. Breast cancer DX in 2004, lumpectomy, radiation, chemo. Mets to lung and liver in 2007, chemo, radiation. Mets again in colon/rectum, left femour (or however you spell it) Will return to MD Anderson for Pet and CT scan in April. Taste buds are really screwed up, and neuropathy pretty bad, (but had it even before starting Ixempra) Other than those SEs not doing too bad. (fingers crossed) on my next scans.
This stuff sux....
Thanks for all the info girls...I feel blessed to have such good friends as I do here.
Any good remedies for the neuropathy?
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Bumping this back up top
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How long does the fatigue last for? I had my first Ixempra on 3/19 and was OK on 3/20, but since Saturday the 21st I have been really tired. Does it go away? Same with the nausea..I am still taking anti-nausea meds and its been 6 days now.
Jan
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Hi Ladies, Thank you for all of your suggestions for the reflux issues. We seem to have that at bay for now. Starting tx #2 next Friday and was hoping you could enlighten us as to other side effects besides fatigue. Since the first tx (1/2 does) she has experienced nausousness and some black vomit (which may be from the reflux damage to the esophogus). She also has a swollen and hard liver and has not been told that she has liver mets. Any suggestions? Thank you again. Sally's Friend, Marla 0 -
You had your 1st Ixempra the same day I did. Here is what my SE were day to day. 19th Treatment, felt good due to the steriods, 20th still felt good--started feeling SE this evening with tongue feeling swollen. 21st woke up with severe muscle pain. Felt like the really bad achy flu. Start taken pain meds. This SE might be due to the Neulasta injection I received. I don't do well with those. In Bed all day, tongue and throat felt like there were sores. Hard to swollow. Sunday 22nd still in bed with muscle pain, tongue and throat felt better. Monday 23rd muscles felt better but the fatigue was overwhelming. Having a hard time napping and sleeping at night. Still in bed. Nausea started. Started taking oral anti-nausea pills with 7-up. Tuesady 23rd Still overwhelming fatigue. Wednesday 24th woke up and felt good. Made bed, did laundry, went to store, fixed dinner. 26 & 27th felt pretty good. No real issues. 28th(today) had more fatigue, not a bad as a few days ago. Took Ritalin and feel normal with no other issues. I hope this helps and I hope you are doing better each day.
Take care and Gentle Hugs!
Jean Sadler
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Jean, I had the same overwhelming fatigue on Monday the 23rd and Tuesday, and I also was a little more energetic on Wednesday - felt well enough to go to my Bunco group. At least I know what to expect for next time, although my overwhelming fatigue day will be on Easter Sunday. What do you take the Ritalin for? i was taking some Tylemol PM to help me sleep better, but I haven't had the pain that some of these ladies have had. Maybe it is becasue my onc started me off with a reduced dosage rightaway becasue he was concerned about the neuropathy. I must say that the fatique has been a lot worse than any of the other chemos I have been on. My hair did start to fall out on Sunday the 29th which was day 11. It came out in clumps this morning and I am still trying to hold on to it, but I came in to work and ordered another wig because I doubt I will have it much longer (I even brought my old wig with me becasue I pictired sitting at work and all my hair falling out at once) I know; I really overthink things.
Take care.
Jan Fattore
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Hey Jean~hadn't noticed on the boards about Ritalin being used, is this for your fatique? I was in a study at MD Anderson for just that very same thing. How's it going for you? I don't take them every day, cause somedays I just want to be lazy...anyway, hopes things are looking up for you
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I'm 14 days into my second Ixempra cycle. Still very fatigued, although maybe not quite as bad as the first. I have been feeling nauseous almost everday but Sunday and yesterday - days 12 and 13 - felt even more nauseous. My anti-nauseua meds didn't work, now I am better today. may have been a stomach bug becasue 2 ladies at work had it. But are you all finding that the nausea is a constant thing from one infusion to the next? i even had to get extra anti-nausea meds when I was receiving the Ixempra.
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Seems the more I take it the weaker and more nauseated I feel. I'm taking it in combination with Aridia every 4 weeks and those treatments are harder that Ixempra on it's own. Interesting that you said it was like a stomach bug because that's what I thought when I gave in and stayed home yesterday from work. That it was like the bug on top of everything else. This just has to be worth it right!
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Thanks for doing this - I'm new to Ixempra/Xeloda - midway thru 2nd cycle. I briefly had the bone/back pain in the first cycle but then it quit. Hope this happens with you. I found that I could sleep in a chair sitting up with pillows around me when it occurred. I also have the foot/hand tingling. Bad nausea first cycle but OK so far on this one. Hope the pain goes away for you.
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Sydpen2, You are right. This better be worth it!! I told mu husband yesterday that I don;t know if I want to stay on this with feeling so tired and nauseated most of the time. Do you find that anything works to help combat the fatigue? I am not the most active person but I never never laid around and slept this much. And sleep doesn;t even help. Then I am too tired to get up and eat which I am sure is adding to the fatique becasue I am probably not eating enough. Now I am getting all worried becasue I go for my third treatment this Thursday and I am not looking forward to it at all. So maybe it's part depression as well.
Jan
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Hi all from Surprise, Arizona!
Starting my second round of Ixempra tomorrow, Wednesday. My hair did start to fall out last week so I've been cutting it shorter and shorter. I've been dealing with this for so many years now I have a collection of wigs that I wear when out.
It's still depressing though; I remember when I first started treatment and how my hair looked; but, at least I'm still here to remember - lol.
I'm hoping the second roundof Ixempra will be a little easier to handle.
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bumping this thread as a few others are starting this...good luck gals! All I can say is dosage dosage dosage. If you have problems, ask for your dosage to be reduced.
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Thanks for your diary on this new drug. I am due to start Ixempra on Weds and am very worried. I had so much pain when I was on Taxol, so I suspect I will have the same with this. It's nice to hear that your pain has subsided after a few rounds. Maybe I will be able to hang in there.
Good luck and please, keep us posted....
Linda
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Hi:
I had my first does of Ixempra last Weds. Pain started on Friday afternoon and I am still in pain. It's different than it was on Fri and Sat, as it has started moving around. I started off getting pain from the hips all the way up on Fri and Sat. Even my jaw/gums hurt. Now my upper and lower abdomen hurts, I am getting shooting pains in my hands and my ribs, shoulders hurt. Just took two percs a while ago and still don't feel great. For those that have experienced the bone pain with this drug, how long did it last for you. I keep hoping I will wake up pain free. I felt pretty good this a.m., but still had the abdominal pain. Once the day wears on, the pain just seems to spread. I also had the shot to boost the blood cells last Thurs, one day after dx, so that might be some of it too.
Thanks,
Linda
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Hi Linda,
This was the toughest chemo I ever did! And it was relatively new when I did it. The docs I talk to now about it say it is a nasty one as far as SEs go. My pain was bad for about a week after the infusion. Then I just had tons of nausea and feet tingling and intermittent shooting pains.
It was so bad that after a few infusions I asked the doc to lower my dosage and he did and it helped tremendously so just keep that in mind if it gets too bad for you.
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Thanks Too Young! I know I will talk to the doc about a reduced dose next time. I'm hoping I don't end up getting the nasuea on top of this in the next few days. So funny, Friday morning I was telling my sisters, I don't feel too bad. Maybe I won't get any SE from this... lol.... now I feel like shit!
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Hey Toyoung,
Im on day 6 Ixempra so far Ive had terrible pain everywhere called onc today and he gave me oxycodone for pain because vicodin wasnt cuttting it and I was having to take it to often and he said that could damage my liver. It has helped couple of major issues are FATIGUE, appetite loss and severe constipation even with help from stool softeners,enemas and flax and metimucial yuck.Dr. said SEs should be subsiding next day or two yeah... Keep your chin up and rest,rest,rest.It would be nice to keep in touch with you to hear your progress Pm me anytime.
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Hi Denisela:
We shared posts last wk as we both just started this drug. My sister took over and called the onc this morning and got another script of perc and a script of oxy for me. I didn't get the oxy filled yet. My reg pharmacy didn't have any and when we found one that did, my insurance didn't want to pay for it. But, having the additional percs helps a lot, because I can now take them when I need them. Of course, the constipation is awful but the pain was worse. There is no way the onc will give me a full dose next time. I agree with too young ... This shit is brutal. I don't know how to pm on this board but am willing to learn so we can stay in touch. I am glad you seem to be handling this stuff O.K. Here's to our success!!
Take care,
Linda
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