Questions on how you feel on Lapatinib and Xeloda
 

I tried searching for a thread, but I couldn't find exactly what I was looking for, so I apologize if I'm doing a big repeat here! I'm going to be starting on Laptinib and Xeloda in a few weeks as soon as I'm dome with and past the waiting period after having WBR (three more rads left)! So far, all of KY chemo and Herceptin has been infusions through my port, so I get it all on one day, feel like crap for a few days to a week, then I have a week or two where I almost feel normal again. Since it sounds like I'm going to be taking all of these pills for two weeks on, one week off, I'm just wondering how it works. In general, do you feel like crap every day during the two weeks you take this stuff? The aches, pains, nausea, etc.? And then feel decent for the week off? Or is it something that other than the diarrhea I'm hearing about and the hand and foot evils I've read about, you feel kind of okay during the two weeks? I'm just really nervous about it since I've gotten used to getting it all infused and then moving on for a week or two for the last year, which has helped planning to be able to do stuff with my kids and family. It seems like taking all of these pills every day on top of what I already take, and taking them every day for two weeks might prolong the feeling like chemo crap. I know this stuff can affect everyone differently, but I figured you guys might have some insight.

Don't get me wrong, I'll do whatever it takes to get and keep this crap under control, get some regression, etc. I just want to see if I can start planning how I can LIVE while I'm doing this new treatment and I hate the thought of feeling terrible for two solid weeks and then recovering during a week, only to start it all over again with the next cycle! Thanks so much in advance for all of your help. This site and all your advice sure has helped keep me going the last 13 months! :-)

Re: Questions on how you feel on Lapatinib and Xeloda
 

Krissi,
I was on the combo for 5 months and by the 3rd month I had the drugs down to an art, and had very little discomfort. And no, you won't feel like crap for the 2 weeks your on the Xeloda. Chances are the only issues you will have is sore feet and diahrrea- both are very manageable. Couple of tricks I learned- I did end up decreasing my tykerb dose from 5 pills to 4, and getting by with 1 diahrrea episode/day. I found taking the tykerb at night was helpful because then I would have my "episode" in the AM before I left for the day. Also, I found that cutting out lactose products really helped reduce the diahrrea. So I avoid alot of cheese, and enjoy lactose free milk and lactose free yogert.

As for the hand and foot syndrome, I took 2 pills in the AM and then 3 at night, thinking that the higher dose at night helped prevent the drugs from leaking out and damaging my feet. I did have to decrease my dose of Xeloda. The hand and foot syndrome is caused by the drugs leaking out of capillaries under high pressure/friction (hands and feet), then the chemo does its job, and kills cells- only they are the healthy ones in your feet/hands. When my feet got really bad (usually only lasted 1-2 days out of the 14), it was after being on my feet all day for a couple days. Icing my feet really helped as did tylenol and ibuprofen.

I really didn't mind being on the drugs, I liked the flexibility and not getting poked with needles. On another note, I did end up loosing about 7 lbs on the drugs (probably from the diahrrea), which was a nice surprise.

Be patient and talk to your doctor about the symptoms and side effects- as they can prescribe anti-diahretics to help and can decrease the doses of the drugs. My doc assured me that the lower dose would still be effective, and I shouldn't worry. Good luck!

Re: Questions on how you feel on Lapatinib and Xeloda
 

I cannot thank you enough for your reply. It's such a relief to hear from someone who has been on this one that it is manageable. With a 5-1/2 year old son, and an almost 3-year old daughter, I was so afraid I'd be miserably sick for the whole two weeks on the Xeloda and not have much quality time with them. Thank you so much for taking the time to reply and give me such good information! I have my last WBR treatment this morning, and then I start the Tykerb next Wednesday, and the Xeloda two weeks from today. I'm anxious to get started since it's already been 5-1/2 weeks since I've had any chemo, and I'm terrified the cancer is running rampant through my liver again! I hope the new combo you started in January does the trick for you and you're feeling well! Thanks again!

Re: Questions on how you feel on Lapatinib and Xeloda
 

Hi Krissi and Kristin,

I'm reading with great interest as I was given the choice of Xeloda yesterday for lung mets, but ended up with Halaven because my insurance does not cover non-infused chemo. Did either of you have any trouble with insurance not covering the cost of Tykerb or Xeloda? I don't know if this is something I can try to fight for in the future? I'd regret taking two potentially good treatment options off the table because I can't afford them out of pocket :) Krissi, I also have a brain met I am having zapped next week and my onc did suggest we consider WBR... I only have 1 spot right now, but the concern of course is how many others may crop up in the near future :) Any advice on what to expect from WBR if that is what we decide to do?

Thanks ladies, I am so happy to have stumbled across your thread today :) I wish both of you well in your new treatments!!

Re: Questions on how you feel on Lapatinib and Xeloda
 

Hi Vicky,
I hate hearing that insurance won't cover the cost of medications we may need! I am extremely fortunate in that I just found out that my copay for the Tykerb and Xeloda is $0!!!! It's being delivered right to my house, and insurance is covering everything. I'm so relieved. I do know that when I first learned I'd be taking this, I started looking into payments, etc. I saw that there are financial aid programs for these drugs through so,e organizations, and maybe even through the pharmaceutical companies, so you may try checking into that! I've heard good things about Halaven, too, though, and I figured it might be one we try if the Tykerb and Xeloda doesn't do the trick!

As far as the WBR, we ended up going that route as the best option since I have nine lesions that are spread out all over my brain. Of course, they couldn't centrally locate for me! I just had my 13th and final one today. I'll be honest, I've found it to be kind of tough, and I think I prefer chemo! It's probably the combo of the steroids and the rads that are the worst. I'm not sleeping much at night, so I'm exhausted, but because of the steroids, I'm jittery and can't sleep. The steroids also make me starve...like crazy starve a couple of hours after taking them. I have gained 8 lbs. In two weeks. It's crazy. And that has made my bowels tricky and my stomach hurt. In addition, I just feel a little scattered and fuzzy (kindof like the chemo fog), and I am just so tired for a few hours after the radiation treatment, that it's all I can do to stay awake. Plus, since I've been off chemo for 5-1/2 weeks and can't start back for two more weeks, I'm terrified that the cancer in my liver and bones is running rampant, progressing, maybe spreading. It's terrifying!

That being said, I don't want to scare you about WBR. It's definitely not worse than chemo, just different. I really think it's the steroids and lack of sleep making it worse on me, because the few days I've gotten a good night's sleep, I'm a different person after rads. And, the good thing is, the 13 treatments went very quickly, now it's over, and hopefully, it did its job and killed the existing lesions and will protect against anything else that may have been brewing. I'll have my follow-up MRI on march 21, so praying it's all clear! I won't say WBR has been fun, but it's doable, just be prepared to be tired in a cumulative way and try to get naps if you can! I found timing the steroids helps. I try to take the evening one around 6:00 pm, and then wait to take a sleeping pill around 10:00 or 11:00 to try to get some run out of it late at night!

Anyway, I know I'm rambling! After all, I did get the last noggin scramble this morning! I'm wishing you much luck and blessings! Keep me posted on what you end up doing for the brain met. I hate that we have to deal with this, but I'm so grateful to have people on here who have been here and can relate! Take care! :-)

Re: Questions on how you feel on Lapatinib and Xeloda
 

Hi Krissi!

Thanks for the quick response... I am giggling a bit over the fact I had steroids before Halaven yesterday and managed a couple of hours of sleep myself last night- so I can relate to how it might feel if it were to continue. I'll find out the plan Monday!

Thanks for the good insight on WBR... I know its under consideration, but we will see. I just have the 1 spot right now, but we all realize one can become many in no time.

My onc offered me the choice of doing radiation and then chemo later, but I am like you and thought with my lungs showing progression I didn't want to go too long without something in my system. Crazy to think we thrive on chemo :)

But I am so glad to hear your last session was today!! Two more weeks and you'll be back on chemo and hopefully your scan will show evaporating tumors!!

God bless and good luck to you! You'll have to come back and update!

Re: Questions on how you feel on Lapatinib and Xeloda
 

Vicky,
I do recall the process to get Tykerb approved by my insurance was extensive. Thankfully my doctor and nurse were all too familiar with the process and I never really heard much of it. All I remember was the nurse calling me up saying that it was finally approved and I should be getting a call.
What type of insurance do you have? If you don't mind me asking.

Re: Questions on how you feel on Lapatinib and Xeloda
 

Hi Krissi,

Sorry to read that you have to start a new treatment plan. I'm hoping this one works wonders for you. I don't want to scare you with my story but I do want you to know that you are not alone if you have a tough time with your initial adjustment to your new plan.

I've been on Xeloda for over a year now and added Tykerb to the mix about 3 months ago due to progression. I experienced side effects along the way while solely on Xeloda but nothing that ever prevented me from getting out and doing things. I did find that over the course of the 2 weeks I was taking the pills, I would get progressively more tired. I also seemed to experience every side effect at one time or another. The hand/foot syndrome did get tough at some points but I found that constantly moisturizing with Weleda cream helped to heal my wounds quickly. The cracks in my fingers did give me a reprieve from washing dishes some days - there's always a silver lining! ;)

I was taken off Xeloda in the fall due to eventual progression. It basically wasn't working anymore. But, thanks to my insurance coverage, I had to add it back into my treatment plan in order to get my Tykerb prescription approved. As you probably know, the clinical trials show great results when the 2 pills are taken in combo.

The first 6 weeks I was on both Xeloda and Tykerb were exactly the opposite of my experience on Xeloda alone. I did experience a handful of side effects but it was the gastrointestinal issues that prevented me from leaving my house some days. Luckily, I work part time from home and the bus that takes my kids to school picks them up at the end of my driveway. During those weeks, I tried changing my diet, doses of immodium and some other attempts to minimize the side effects but ultimately I lost about 10 lbs. and lost all energy and desire to do much of anything.

Since then, I have worked with my oncologist to make some modifications to my treatment plan. After hearing about my side effects, my onc decided to cut my Xeloda dosage in 1/2. That helped me quite a bit. I also decided that on days where I want to be active, I don't take my Xeloda at all. I shared this with my onc and he was ok with it since he didn't really think it was working anymore.

Now about 3 months later, my tumor markers have dropped significantly and my skin mets have almost visibly disappeared! And thanks to the changes made to my treatment, I experience less side effects and am active more often (I've skied a handful of days this winter). I still find that I am a bit drained for a couple of days at the end of the second week on Xeloda. But, it's nothing compared to how I felt on IV chemo. I am also working with a nutritionist to come up with a plan to help me better manage the days when I have GI issues (much less often than before).

Timing the taking of the pills has also changed for me along the way. I started taking Tykerb at night before I went to bed. This works for a lot of people from what I have read but it didn't work for me. I ended up being up a lot during the night with an upset stomach. The lack of sleep also got to me. I now take the pills (5/day) first thing when I wake up. I take my morning dose of Xeloda a bit later when I eat. I find that if I am going to have GI issues, it's usually in the morning and I'm usually feeling fine by midday, if not earlier.

Sorry for the long post here...Hope this helps you as you start on your new treatment plan. I wish you all the best ~ Jen

Re: Questions on how you feel on Lapatinib and Xeloda
 

I am following with interest as i have just started this combination. I have had a week and a half of xeloda with no real side effects apart from slight fatigue but added tykerb into the mix three days ago. I have had diarrhea but only once a day so manageable but I feel very foggy and fatigued. I have lost my appetite too- a bit like early pregnancy. I am taking 5 tykerb in the morning and then 4 xeloda twice a day - breakfast and dinner. I have the option to reduce to 4 tykerb and 3 xeloda twice a day. I am going to give myself a bit of time to adjust as I am only day 3 on the Tykerb.
I will have a week off the xeloda after 2 weeks on. My fingers and toes are a little drier but ok so far but it is early days I suppose. I have seen my skin met almost disappear to a pale pink mark on my skin within a week of taking the xeloda so I am hopeful the addition of the tykerb will kick these lung mets away too.
I might try the tykerb at night and see if that makes a difference.

Does anyone know what the most effective doses are?
Thanks,
Amanda x

Re: Questions on how you feel on Lapatinib and Xeloda
 

Thank you for your reply, Bevilj! I am so much more reassured by the replies from everyone on here!

Amanda, I've been on the Tykerb now for two weeks, and the Xeloda for one week. I take five Tykerb in the morning, but since it's supposed to be on an empty stomach, I take it when I wake up to use the restroom anytime between 4:30 and 5:30 am, then go back to sleep until it's time to get my sone up for school at 6:30 am. The I take 4 Xeloda after I eat breakfast, and then 3 Xeloda after dinner, before I go to bed. So far, it has really, really knocked me for a loop. For example, After getting my son off to school today, I went back to sleep and slept really hard until 11:00 am. And I probably could have slept another few hours! I am really exhausted and nauseous, just like you said, like early pregnancy feeling. I really hope it's just my body getting used to another type of chemo and just taking a hit, especially because my family is taking a spring break vacation in about 3 weeks to the beach, and I so want to enjoy it with my kids, husband and our families, and it's during my next cycle of Xeloda! Plus, I'm tired of feeling unproductive and useless around here! I'm just so tired and sick! But I have high hopes and really pray this is working! Wonderful that you can see your skin mets melt away! If you don't mind my asking, what do skin mets look like?

Thanks again, all!

Re: Questions on how you feel on Lapatinib and Xeloda
 

Hi Krissi
I am on my second cycle now - I have changed to taking my Tykerb at night and I feel much better. So far this cycle (I am nearly finished the first week) I have no diarhoea and the nausea is fleeting and the fatigue not so bad. I also have weekly accupuncture and think this helps with my symptom relief. I am taking 4 xeloda with breakfast and dinner and then 5 tykerb at bedtime.
My skin met started looking like a pimple - raised red area - never blistered - then it spread in an elongated shape and eventually a star like shape.
Hope you are doing well.
Amanda x

Re: Questions on how you feel on Lapatinib and Xeloda
 

Hi Vicky,
My response is probably far too late, and a decision has been made by now. However, in case your doctors haven't already done so, I would ask them to very carefully explain the long term side effects of WBR. They can be significant. I didn't have a choice (many many lesions, they didn't do an MRI on time. I still wish I could sue that doctor), but if I had had it, I would certainly have refused WBR with just one lesion.
All best,
Beatriz

Re: Questions on how you feel on Lapatinib and Xeloda
 

Hi Krissi,
I haven't taken Xeloda yet, just Tykerb, and my body got somewhat used to it over time. I certainly experienced a lot of fatigue, but I also got Gammaknife and a craniotomy at that time, so its hard to know sometimes what comes from what.
All best,
Beatriz

Re: Questions on how you feel on Lapatinib and Xeloda
 

Hi Vicky ! Sorry to hear about your problem with the insurance. Under some plans the oral chemo drug is covered under RX plan while IV chemos are covered under medical. Unfortunately RX and medical plans are seperate. I don't know what type of insurance you have. But if you don't have RX coverage, you can also check if the drug company has compassionate usage.. i read about people getting help and it was really a life saver.