Swelling face due to Tykerb/Lapatinib

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chinit0
chinit0 Member Posts: 17
edited June 2014 in HER2+ (Positive) Breast Cancer

hi guys,

my mom is currently taking tyipkerb/lapatinib (1000mg) for about two weeks now as part of ALTTO study. She started last Jan 13 and yesterday she started to have rashes on her face, arms, back and hips. no rashes on her chest area. today when she woke up, we noticed that her face is swelling. onc already advised to stop the lapatinib for 1 week and prescribed iterax for my mom. i'd like to ask if any of you guys also experienced this SE (swelling face?)? how long have you been on tykerb before you experienced the SE and when did it subside?

thanks!

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited February 2010

    I don't have swelling in my face, but I did get another lovely "whole body" rash yesterday :<  It is everywhere (solid rash) except my face....I probably just jinxed myself, LOL!!!   It is soooo uncomfortable!   I think everyone is different, but I got a severe rash a few months ago and my dose was not decreased because I have brain mets.  They might consider lowering your mom's dose.  I have been on it over 6 months now and thought I was past this crap!!   I am at work right now wrapped up in an electric blanket at my desk because this rash is so hot it feels like a sunburn.  My last rash went away after a week or so....and no creams or benadryl helped.  Let us know how your mom is doing!! 

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  • krcll
    krcll Member Posts: 343
    edited February 2010

    My face swelled up last week (with lots of redness and blotchiness) after 5 weeks on Lapatinib. I am also getting weekly Taxol, so I wasn't sure if it was the Lapatinib or Taxol. The onc had me stop the Lapatinib 4 days and it gradually cleared up. I've now started Lapatinib again yesterday so I will have to see if the swelling comes back. I've heard that if you have to take a break because of swelling or rash, it often doesn't come back after the break. I am hoping that is the case, because otherwise I might have to go off the Lapatinib and the trial (ALTTO). I think they are worried that the swelling can get out of control and then it is dangerous. I think the rash is basically OK to have, but there might be some sort of point there too where they might get worried.

    Keep us posted on how your mom is doing. It is certainly good to be sharing info on this site. Everytime I talk to an onc, other than my regular onc, at the cancer center they aren't too familiar with the SE's of Lapatinib because it is a relatively new drug, and until this trial, only used on stage IV women. 

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited February 2010

    KRCLL - good to know that if a rash occurs that it may not come back after you start up again! 

    My rash was everywhere but my face so I have to stop the tykeb for a bit, but with brain mets stopping is not an option.  I am just relieved at the possibility I won't have to live with that painful rash.  In my other post I mentioned I was freezing....turns out I had a temp of 103 which only lasted 5-6 hours.  The next evening I only had a low grade fever and I started to swell :<   Not sure if anyone else experienced a fever with this rash??

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  • krcll
    krcll Member Posts: 343
    edited February 2010

    chainsawz- Boy, it seems like you're having a rough time right now. Is the fever from the Lapatinib? When you say you started to swell, was that in the face? I really hope that a small break will relieve alot of your symptoms and that you will be able to go back on it for a good long time!

    I can at least report that after a 4 day break, I've been back on Lapatinib for 3 days without any sign of the swelling or rash that I had had before. I must admit that the rash I had was never all that bad, it was just the swelling that was freaking me out. 

    I hope you will be feeling better soon!

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  • chinit0
    chinit0 Member Posts: 17
    edited February 2010

    sorry for the late reply. just an update, my mom's face is okay now and the swelling lasted for 4 days. her rashes are also gone and she still hasn't continued the lapatinib. her onc put her to a break for 2 weeks (initially 1 week). She'll continue to take it on friday along with her taxol and herceptin. I really hope that the swelling won't come back as we don't want her to go off to the trial too.

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited February 2010

    I'm glad the swelling and rash have been resolved for you guys!!  I stopped the tykerb and was put on levaquin (antibiotic) and it is almost gone now.  It was all over my trunk, legs, arms and scalp, but spared my face :>  The swelling was mainly on my abdomen and thighs.  I am convinced the fever was part of the reaction to the tykerb....especially since all my labs were normal.  I am starting it again tomorrow, but a reduced dose so we'll see how it goes.  I am going to stay on it no matter what because what's a little rash compared to brain mets...LOL!!!  

    Good luck to all of us!!!

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  • chinit0
    chinit0 Member Posts: 17
    edited February 2010

    hi lisa, you've been on tykerb for 6months now, how often you get the rashes? thanks! :)

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  • krcll
    krcll Member Posts: 343
    edited February 2010

    Just an update- I have taken tykerb again 6 times after my 4 day break and I think I am starting to swell a little in my face again. It isn't much yet, so we will see how it goes. I don't have any rash or redness like I did before. I was told I could take a antihistimine so I will see if it helps.

    Lisa- I hope the reduced dose does the trick for you! That you got such a big rash is a sign of effectiveness, isn't it? What is your reduced dose? On the ALTTO trial, they reduced the dose while we are also on Taxol from 6 to 3 pills a day. It was just in time for me, because at that point I had had a week of crazy diarrhea (not eating for 3 days and still round the clock diarrhea- while taking 10 immodium per day!) and was feeling really weak. Of course,now I worry that 3 pills a day aren't enough, but after the Taxol is done, the dose goes back up to 6 a day. Anyway, I am crossing my fingers like crazy that the tykerb kicks those brain mets butt for you, Lisa!

    chinit0- Glad to here that your mom's rash is better. Tell us how it goes when she starts up again.

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  • chinit0
    chinit0 Member Posts: 17
    edited February 2010

    i hope the swelling won't continue for you krcll. my mom hasn't taken lapatinib since 29th of jan but she's still having rashes from time to time. sometimes she'll have it on chest on the morning and the next day, its gone. sometimes on the neck. i'm not sure if this is still related to lapatinib because she's currently on her break. does it happen to you guys as well?

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited February 2010

    My reduced dose is 4 tabs....I was on 5 a day since 08/09.  I had three episodes of rashes.  First one happened only on my scalp in the first month.  After three months, the back of my thighs were covered, and then this last bout at around the 6 month mark.  I always had a little rash somewhere...usually on my face, which I control with clinadmyacin. 

    KRLL - I am bummed the swelling is starting up again.  Shoot!  I hope it stops so you can stay on the tykerb.  I hate the poop soup - as others have so fondly referred to it!  I can't believe you were on so much immodium.  yuck.  I take one a day and deal with 5-10 times a day.  It's the worst side effect of this med, but I hope it is kicking cancer butt!  I don't know if I could stand 6 tabs a day.  I am hoping they want to leave me on 4....whine!!  

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  • chinit0
    chinit0 Member Posts: 17
    edited February 2010

    thanks lisa. do you still continue the lapatinib even if you have rashes? we just got home from talking with onc and its been a long day... :(

    bad news... seems that my mom will be go off the ALTTO study. she still having rashes, moderate (she has it on her neck and stomach) and onc doesn't want to do chemo and herceptin because of the chances that my mom would experience another severe allergy that might lead to breathing problem. another thing is that onc want to attribute the allergy to herceptin, the reason is that the last time she had her herceptin (jan 29th), she didn't took lapatinib (she last took it jan 28) so the onc believed the allergy is because of the herceptin but I doubt it because the day she had her herceptin, my mom already has spots of rashes on her arms, and the next day (30th jan) her face swelled up. can't you really do herceptin/lapatinib/chemo if you have allergies? and can you also get rashes from herceptin? the altto protocol is that you could only have break from herceptin/lapatinib as long as 2 weeks. we asked if there's still a chance that my mom will still be in the study and onc said she'll get advice from the clinical monitor and will update us asap. 

    I really hope my mom will still be part of the study. we are already shouldering the money to for the weekly paclitaxel and we can't afford the herceptin/lapatinib as it is way too pricey. we from philippines and money is really an issue. :( i know we can't just stand here and wait until cancer comes back, we must do something but what are the other options... *sigh* i'm sorry guys, i just need to let this out. 

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  • chinit0
    chinit0 Member Posts: 17
    edited February 2010

    i just want to clear my post:

    on 01/13/10 - my mom's first chemo + herceptin + lapatinib

    01/21/10 - chemo + herceptin (mom continued lapatinib from 13 to 21)

    01/29/10 - mom only got herceptin (discontinued lapatinib on 28th and didn't get chemo due to diarrhea). noticed few spots of rashes on her left arm. the night of 29th, she already have rashes on all her arms and its itchy.

    01/30/10 - my mom's face swelled up and got rashes over her hips, arms, back and face. still itchy.

    02/1/10 - face is still swelled up, we visited onc and given anti-allergy meds and steroids. 

    02/4/10 - swelling and rashes starting to subside.

    02/5/10 - swelling is gone but rashes is still subsiding. still no chemo, herceptin and lapatib.

    02/6/10 - rashes is gone but got red bumps on the areas that didn't have rashes (like in the neck and chest and stomach). i thought this is still rashes but i just google it and figured out that this looks like hives. its itchy but not that severe which also come and go. she still has it until today.

    still onc want to attribute it with herceptin but i think it is due to lapatinib, i dont know. :( 

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited February 2010

    When I first started getting herceptin, they gave me benadryl as a pre-med to help stop any allergic reactions, but I never had any type of rash...anywhere.  I haven't run into anyone on tykerb that didn't get some type of rash so I agree with you.  Unless my rash becomes severe and messes with my breathing, the tykerb will keep going and I'll take benadryl or steriods (yuck) to help control it.  Hopefully, any occurances will be small..fingers crossed!  I am in a different boat...stage IV, so the benefits far outweigh the risks.  Your mom is stage 2, so they will probably take a different approach and may discontinue the tykerb?  Keep us updated and I am hoping the rash goes away!!  

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  • orange1
    orange1 Member Posts: 930
    edited February 2010
    I've read that people that get rashes on lapatinib/Tykerb, tend to respond better to it than those that don't get the rash Smile
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  • krcll
    krcll Member Posts: 343
    edited February 2010

    chinit0- I'm SO sorry to hear about your mom maybe having to go off the trial! I don't have any experience with Herceptin so I wouldn't know if the rash could be due to that or not. If she does have to go off the trial, is there some way to get help to pay for the Herceptin? In the USA, I have understood that there are different organizations that help people without insurance with paying for treatment. Are there any social workers at the hospital that could help you with this information? Please tell us how it is going with her.

    Lisa- I took so much Imodium because the trial nurse told me they found that it was better to get in there with the Imodium as early as possible and to rather take too much (up to 10 a day) than too little. When it was at it's worst, I don't really think anything was really helping- but it was only for a week so I don't really know. When you say you deal with "5-10 times a day", is that something you always have? Wow. Do you find that you can make any difference with what you eat or not? I can see why you want to be on 4 tablets a day!

    Right now I have a little swelling around my eyes but that is it. My onc said it isn't something to worry about so I'm fine with it. I don't have any rash at all now which makes me worried- maybe the 3 pills is too little to do any good. Poop soup is almost non-existant as well. On the other hand, maybe I should just enjoy it while it lasts- when I am done with Taxol in 4 weeks, I'm back up to 6 pills for the next 9 months. If you, Lisa, can manage to be on it for so long, I am certainly not going to complain having to be on it for just a year. 

    Has anyone had high liver enzymes with Tykerb (and Taxol)? Just wondering, because mine have gone up and if they don't go down I will have to go off the trial. 

    All the best!

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  • chinit0
    chinit0 Member Posts: 17
    edited February 2010

    hi guys,

    me again. got some good news!! today we went to see the onc again for her follow-up checkup and to discuss about the status in the study. guess what, my mom is still on the study. onc said they had a discussion with the sponsor and they ok'd my mom to continue with the study. what a relief!!! onc said my mom will have to take steriods meds a day before, during and the day after her chemo/herceptin to fight with the allergy. mom also had her herceptin today, next week she'll have paclitaxel + herceptin. i hope it all goes well this time

    krcll, we have a charity organization here that gives medicine to those who can't afford (our other option) it but as far as i know, they don't give the full dosage and you will have to fall in line for the whole day before you get entertained (and sometimes 1 day is not enough). my mom will also have her blood chemistry next week, i will let u know if there are some any changes with her liver enzymes but isn't there any meds to control the eleved liver enzyms rather than going off the trial?

     thanks guys for all the support.

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited February 2010

    chinit0 - yay!  I am so glad your mom is still in the study! 

    krcll - When I was on 5 pills (1250) I had 5-10 bouts of diarrhea a day with immodium and 10 to 20 if I didn't....almost a full time job for 6 months! I did fiber, the brat diet....nothing helped.  Now that I am only taking 1000mg a day (4 pills) it has stopped completely and no rash.  The onc has decided that 5 pills is a toxic dose for me because of the severity of my rash and 103 fever, but now I am good to go!  

    My liver enzymes are completely normal, but my last abdominal CT scan a month ago showed my liver has fatty changes from the tykerb.  They don't seem surprised.  I'm not really sure the rash truly indicates the tykerb is working better so I think you are okay.  There are trials going on right now using lower doses to attack the cancer and try to spare the body a bit.  I hope you stay on the trial and get a lifetime of NED!!!  

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  • chinit0
    chinit0 Member Posts: 17
    edited March 2010

    how are you guys doing? i hope all is well with you. my mom is doing okay with herceptin and lapatinib now. her blood chemistry is also normal. she hasn't had any rashes since she got back from lapatinib but she noticed that she easily get tired, maybe this is due to herceptin. she will have another infusion today. :)

     krcll, what happened to your elevated liver enzymes?

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  • krcll
    krcll Member Posts: 343
    edited March 2010

    chinit0- Fantastic that your mom is doing well and not having any more rashes! So many SE's turn up then disappear after awhile. It is confusing...

    After I last wrote, my liver enzymes went down for awhile, then last week they went up again. I am seeing the onc tomorrow (and having another blood test) so we'll see what will happen.  I don't think there is any medication to help with the liver. I suppose it is just a sign that my liver is working really hard on the Taxol and Tykerb and that is probably not too good in the long run. If I have to go off the trial I will get Herceptin instead of Tykerb, so I wouldn't be in any dire situation. But I would probably not be able to stay with my super-duper famous and smart onc and the follow-up is not so close. I will write after I get back tomorrow.

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  • chinit0
    chinit0 Member Posts: 17
    edited March 2010

    we just got my mom's blood test result and she has elevated SGPT. krcll, did your onc gave you any medications to regulate your liver enzymes? we will see onc tomorrow to have her herceptin infusion and also to discuss the result of the test. hope everything will be okay...

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  • krcll
    krcll Member Posts: 343
    edited March 2010

    chinit0- I don't know that there are any medications to regulate the liver enzymes. I didn't get any and my onc didn't mention any. You know that SGPT is the same as ALT? So your mom has the same elevated enzyme as I have had trouble with. Mine went down again to 103 last week. It changes weekly and has been anywhere from 100 to 160. It means that the liver is working hard to process the chemo and/or Tykerb. I don't know if it is possible to lower the enzyme but I have read that it is good to eat lots and lots of vegetables and not much carbohydrates and sugars. Also, no alcohol. I'm giving it a try- no harm eating super healthy! Good luck tomorrow with your mother! Keep us updated.

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  • chinit0
    chinit0 Member Posts: 17
    edited March 2010

    thanks krcll. we had a visit yesterday to onc. she said my mom's ALT/SGPT is elevated but still within the acceptable level. according to her, the acceptable level is 1-2x above the normal level. she did ask my mom to take silymarin capsule to protect the liver. silymarin capsule is a food supplement that is highly advertised here in the philippines. maybe you could ask your onc about that... haven't really researched yet the actual benefit of the silymarin but as the onc said, it will help the liver, not sure how but i believe the onc. :)

    another question, when you do your liver test, does it include the creatinine? my mom's creatinine level is normal.

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  • krcll
    krcll Member Posts: 343
    edited March 2010

    dhinit0- Good news for your mom. Since the 7-56 is the normal range for ALT/SGPT, then she is probably not over 100 yet. It seems that Taxol can also be tough on the liver, so it may be that as long as your mom can get through the Taxol part (ending middle of april?) then she might be fine with just the Tykerb and Herceptin. I have never heard of silymarin- tell me if it works! I looked at my blood test form for next week and they are not testing for creatinine. That doesn't mean they have never done it, but at least not next week.

    The latest with me is that my ALT was down from 103 to 90, but my neutrofils (white blood counts) were down to .7 and they need to be 1 for chemo. This was to be my last Taxol so I was super bummed out! They have put it off now for a week. But I was absolutely exhausted last week, so I figure I will just enjoy feeling better each day until I go in again on Wednesday. 

    Say "hi" to your mom and tell her that even if it seems that the Taxol treatment is never-ending, all of a sudden, there you are with the appointment to your last treatment in your hand! 

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  • chinit0
    chinit0 Member Posts: 17
    edited March 2010

    my mom's SGPT is 10pts above the normal range, but she's still far from 1-2x acceptable limit which is good for her. btw, my mom's wbc dropped so she had neocyte injection to boost the wbc two days after her chemo. she's also having mild back and joint pain in the knee, probably because of herceptin or maybe lapatinib or maybe the steriod she's taking during her herceptin infusion? the problem with so many meds is that when you experience a side effect, you're not sure which meds to blame. tsk!

    i agree that taxol seems like never-ending and i just told my mom what you told me. to hang on and not to think too much about it because she only had 5 treatments to go! =) yey!!! oh i should mention this too, during her allergy period, she skipped two sessions of taxol but onc said that its our choice if we make up those missed sessions but its also fine if we don't. what do you guys think? i'm thinking of skipping the those missed two sessions because she's already having herceptin and lapatinib and it will probably lessen the toxicity and to give her a break also.

    i'm so thankful guys that you are here! i wish i could give you all a hug. many many thanks!!!! 

    i wonder how Lisa is doing, i hope she's having a great time right now! :D

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  • krcll
    krcll Member Posts: 343
    edited March 2010

    Good that the SGPT is not any higher at this point. What is a neocyte injection? I have heard of Neulasta and Neupogen for WBCs and wonder if it is one of those? I have heard that at least the Neulasta can lead to alot of bone and joint pain. I didn't feel anything but others have not been able to get out of bed! Also, Taxol can give you bone and joint pain. Again, I hardly feel any of that- maybe a little in my knee. Anyway, I am telling you this so your mom might be able to look forward to getting rid of these SE's when she is done with Taxol!

    About making up the Taxol, I would do it if the doc (and you) feel that it wouldn't risk being able to continue on the trial with the Lapatinib and Herceptin. I agree that the trial is the most important (especially since I remember that you would have problems paying for the Herceptin if she weren't on the trial), but the Taxol attacks the cancer from a different angle and I suppose you never know which of the treatments are the ones that work the best on exactly your mother's cancer.  In the next 5 weeks you can see how her liver enzymes are doing and how she is feeling. But then again, I am the type that won't let them stop the IV until every little drop of the Taxol is down the tube and in my veins, so I may be a little extreme in wanting to get everything they will throw at me! Maybe chainsawz or someone else more knowledgeable than me will come along with a more informed opinion.

    One thing I have found is that while the effects of Taxol are cumulative, it wasn't true that every week was worse than the week before. Sometimes I would have an especially bad week and I just couldn't imagine having 5 (or 7...) weeks that were worse than that. Then the next week would be just enough better that I knew everthing would be alright. For me, it was important to remember this when I was having a bad week....

    I have had the week off from Taxol, as I said in an earlier post, because of my low WBC's and I have gotten back SO much energy, just from this little break! That made me SO happy, because I see that when I am done with the Taxol next week I will feel at least somewhat better right away. Of course, feeling completely normal may take more time, but not feeling like a 100 year old woman (I'm 49) is a real joy! 

    Yes, I also am hoping that Lisa is doing well and having no problems with rashes, poop soup and other delightful things! Hugs to you and your mom!

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