All about Xeloda
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Oh, Shetland... hoping for the very best outcome and pulling for you and your family. Sending big hugs to you!
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And Megan, I totally agree with Shetland. Your onc should be listening to you. If he or she is not, get a second opinion and/or get another onc.
I am another who has fired an onc. Mine was considered stellar in the area, but she wasn't paying attention. She missed several critical elements in my treatment because she was too busy. I moved on.
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Shetland you are our Rock star THIS cannot be happening. So sorry. But I'm praying the stent will last a long time. It really helped when my hubby had pancreatic cancer. And then another TX to stop whichever cancer it is in its tracks.
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I recognize some of you (Denny) on this thread and am just commenting on my recent 1 & only course of Xeloda (capecitabine).
The common side effects literature doesn't mention photosensitivity since it is a rare problem. However, I had it in spades. Had to go to the ER burn unit since Oncologist feared Stevens-Johnson syndrome. My lips were blistered terribly, in addition to my face, hands, arms, chest, upper arms - anywhere the sun hit my skin once on the Xeloda. Severe diarrhea as well.
I managed only 9 days of the 14 days of pills (of course, my Oncologists believe in using a high dose so I was on 3500 mg/day) before I had to stop.
They believe I'm allergic to the stuff so I am done with that. Already!
Just beware. Use your sunscreen and stay OUT of the sun. Maybe others have different, better experiences.
Even though I took the stuff June 5th to June 13th, I've been having HFS on my big toes and the heel of right foot. No hand issues..yet.
Moving on to Halaven.
Sorry if this scares anyone, but I thought I'd better mention it.
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Hi Miriam! Good luck! I am only on 2,000 a day and have been okay in the sun while doing yardwork. I always use sunscreen though.
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Thanks, Denny.
I think that's interesting that you are on 2000mg of Xeloda/day. On what is that based? My MO said it had to be based on my surface area. I am 155 lb, 5 ft 6 in. A couple of people who have been on Xeloda told me that was too much at 3,500 milligrams/day, which is what they dosed me. I'm wondering if my oncologist give me too much of this drug?
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MirriamWillits,
Thank you for sharing your story. Sorry it was so challenging for you.
I just started 4,000/day 2 wks ago. Bad HFS hit day 4-5. Lips tingled and burned. I have a lipstick allergy and it acted the same with X. Arms, neck and "public" area (hahaha) had/have a rash...PIcture is about 1/3 as red as real appearance...
MO had me skip last dose, do 1 wk off and will cut dose to 3,000mg/day to start this Saturday.
HFS was so bad I could barely walk for 2 days and with much pain for many more days. I am hopeful at reduced dose, I will do better on X. Concerned of allergy like you...
Good to know I am not alone with this reaction...
Hoping you have a much better go with your next tx. What is that going to be?
Gumdoctor
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Thank you all for the support and kind words!
Gumdoctor, 4000 is crazy imho. Old school. I don’t know how many pages back someone posted research about the effectiveness of lower doses. Maybe you could look for it. I
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I make my own dose, and my MO is ok with that. In the beginning my lips blistered, I had an itchy rash all over my body. I think my nose even blistered. But after dose reductions and being on it for 4 years, I'm doing ok and I'm ok with the HFS. My eyes and nose will drip/water, and my eyes are very sensitive to the sun. So maybe just reducing your dosage, and then after a bit if you feel ok with it, increase it. I had trouble with 6 and 7 pills a day, so I am on 5 (500mg) on a 14/7 days. Hoping this helps some of you.
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Shetland - My Dr Angel is new and says it is based on body surface area. I start cycle 2 tomorrow with 25% dose reduction at 3,000 mg a day, 7 days on, 7 days off.
Hoping I will do alot better...
Gumdoctor
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Have been looking at X dosing info as Shetland Pony suggested...
Just read a review article from 2010 about using less than the recommended dose.
And just GUESS WHO WROTE THIS REVIEW ARTICLE...
None other than my former oncologist "Dr Strangler" Michael Naughton.
For those who don't know this story...I had big communication issues with MO ever since MBC diagnosis. I wanted to switch and was told I could not. Then I received a call in Dec 2018 that he was on indefinite leave. Turns out he was arrested for attempting to strangle his estranged wife. I call him Dr Strangler, in this site only. I call his replacement Dr Angel because she rescued me...
Gumdoctor
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Hi all,
Just started Xeloda on Thursday. Was previously on Ibrance/Femera for 30 cycles, then on the alpelisib/faslodex trial in October but had such a bad reaction to alpelisib then left me on falso as a single agent but liver met kept growing, the trial police kicked me off the trial, so here I am. My MO wanted me on a new trial that uses an oral faslodex and if you progress they add Ibrance, but for some reason the trial has been delayed starting since May1.
In reading this thread I found it interesting all the different dosages given and so I'm glad my MO suggested only 500mg twice perday for 14 days, then 7 off, even though I am 5'10, 160lbs. Because of my previous problems with new meds, she felt we could start low & move up if need be & I saw an article here that supports that.
I started using magic mouthwash immediately, using udder cream on my feet which I already have heat & dryness issues so that's going to be a challenge for me.
cheers, dee
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GG, we are about the same size, I do 5 pills a day. I think some start high and then lower because SE's are so difficult. I think starting low and working up is a wise choice. But give it time, maybe a month or more. Good luck!
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Gumdoctor. I do remember that crazy strangler story. How spooky was that? Glad you're with the Angel MO. Hoping that lowered dose is already helping.💞
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Miriam....I am 5'1" and weigh more than you do. I am only on 2,000 since I am NED. I am also on my old stand-by, Herceptin.
Gumdoctor...Wow-how scary that is!!!
GG27....oral Faslodex sounds a lot better than the shots!!!!
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Gumdoctor: They want me on Halaven on 7.30 but I am resisting, asking to stay the course with simple Herceptin & Perjeta for a while I seem to be getting prone to skin issues (after 8-1/2 years, who can blame my poor skin?) and one of our sisters here mentioned she had blistering rashes with Halaven. I think I'm in that tiny lane that experiences these sorts of problems, as Doxil rashed me as well and they reduced it twice. At 3,500 mg/day, we were in the same ballpark.
Goldie: I like your MO and wonder if you have to be just forceful and tell them, "this is what I want to do". I've always just done whatever Fox Chase told me to do and I'm starting to see problems now that will force me to take the reins more. Not what I want to do as I just don't know what's right anymore. But I'm not up for undue suffering. My kids would like me to keep trying, but I'm a bit weary of this and I've got a much better place to be, LOL. Seriously.
Does Dr. Strangler's bad reputation cancel out the science behind low dose metronomic chemo? I hope not. I think it bears looking into, the reduced dose. It's just that my Docs like to start out with guns blazing. Not sure why.
Denny: Sorry to bring up weight matters. I'm to the point of not caring anymore (I used to jog, lift weights, play racquetball, and here I am a jello mold...LOL). I have started back to the gym, though, I have to brag. I was given a free membership and while off chemo decided I had to get my wiggly under the arm jigglers into some sort of shape. Herceptin is good stuff and I'm thankful that it works for me.
So, I'm gonna try and see if I can stay off the Haloven due to fears I'll just rash out and ask them to just do maintenance drugs (H&P) til my next scans (late August). If there's serious progression and/or I feel lousy, I will get back on the roller coaster. I think, provided I feel good, I'm willing to allow a small amount of progression.
In the meantime, I'm looking for an integrative Oncologist to see if we can get creative.
Love and bear hugs to all of you folks in the trenches on this crazy battle!
Miriam
P.S.: Photo at the Mann Music Center, Philadelphia - sorry it's blurred...I had a really nice wig on, and I'd had a coupla glasses wine, LOL. This is my excellent family.
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Miriam - Beautiful family and beautiful you. I love your wig.
Good point about Dr Strangler's review article. No his situation does not negate the science.
Started 3,000mg/day today. I can feel my feet burning already but I believe it will not be so bad this time. Experience also helps, knowing what to expect and what to look for.
I see Dr Angel in 2 days for a 2wk check after starting X. Blood work and visit with her. I like seeing her so it should be a positive visit.
I understand about wanting to hold on as long as possible with what is not so bad as the next option...my 4 cm liver met did not ask me what I wanted to do. Mr Liver moved in with Mr Clot and told me how things are gonna go from here...
Gumdoctor
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You look beautiful Miriam, and so does your family. My MO is awesome. He tells me, this is my ship and I'm the captain. We want to treat the patient, not the cancer. I was also supposed to have labs done every 4 weeks, I told him I'm not doing that. I'll do it every 6 weeks, not going to live my life 4 weeks at a time. I also choose when I will have scans. At least for the last 5 years I have. Mainly because I have no pain. The only issues I have are SE's.
This is MY body and you work for ME!
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Goldie, Since it's likely that I'll be on xeloda in the near future thought I'd ask you a couple of questions. Do/did you only have bone mets while on xeloda? Or did you also have soft tissue mets? For you, did xeloda shrink you mets or just keep them from spreading to other areas?
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Snooky, only bone mets. Started out on Faslodex and Xgeva, didn't help, then went to X. Been on it for 4 years. Bone mets have spread, but no organ involvement. Mets to hips, groin, spine, jaw and ribs. But no pain anywhere. Haven't been told that anything shrunk.
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So, it's keeping everything in a holding pattern. Well, that's good. I'd take that. My ONC wanted to completely shrink tumor in breast, and small lung nodules and then switch to something else with the chemo. And taxol is doing that but it's been six months and the SE's are getting to me. I live alone and the constant intense depression is getting more difficult to deal with..
Me too mets to furmur, ribs, spine and one rib. And like you no pain. Taxol is doing nothing for bone mets. I see ONC in am for another infusion and I"m wondering if I should push for a treatment change. I was originally told just 3 mos of taxol and then change. Well after scan he said that it worked so well, I had to stay on it. "standard of care"... So I agreed, but it's getting to me now.
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Thinking of you, Grannax, and sending wishes for the very best scan results this afternoon.
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Thanks Kendrasue. I'm counting down the hours, sure glad my son will be there if I have a meltdown.💞
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Grannax -
Just remember that beautiful, powerful woman on the runway we know and love...
That woman can handle it!!!
That woman is YOU!!!
Gumdoctor
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Thanks, I can't wait to see your posts on FB.
Yes, I've done harder, braver things than this. I can do this. Whatever this is? That's my challenge. Even in the worst case, I trust my new doc. Unlike my old doc, I had no trust for her. I just want to uphold my image. LOL. I really don't want to have a meltdown. Or, maybe it's ok to have a meltdown. I might meltdown if it's good news, a meltdown of relief. I'll let you know.
With HFS is it Okay to have a pedicure? I'm thinking about getting one prior to going to MO. For some reason I haven't had Feet on Fire ( FOF) yet this cycle. I'm through with the first week. Last cycle at this point I was fully on fire. The randomness.
This too, will pass.💞
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Grannax, I have regular manicures and pedicures!! Good luck with the scan!
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Grannax2, I’m sure they are used to meltdowns. Happens all the time. Not an inappropriate reaction. So please don’t worry about it.
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Hello All -
Can't sleep...so here I am to give you an update...
What I thought would be a routine visit for 2 week follow-up since starting Xeloda...turned into a very bad situation...
Dr Angel was about ready to let me go...we had already reviewed Guardant liquid biopsy report (2 Ibrance resistance mutations showed up), prescribed topical steroid for bad rash on arms, prescribed magic mouthwash to swallow for bad heartburn...she left the room then came back with lab results...liver tests are bad...AST and ALT highly elevated...she is VERY concerned...
We are stopping Xeloda immediately, scanning on Wednesday then deciding what to do next.
I was on Xeloda a total of 10 days...this is mid-cycle #2...
THIS IS CRAZY ! ! ! THIS CANNOT BE HAPPENING...BUT IT IS!!!!!!!
Gumdoctor
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of gum doctor, I am so sorry. Hoping stopping Xeloda csusedcthe values to decrease. Thinking of you as you navigate the new waters and hope you have a plan soon that brings you peace.
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I'll be leaving this thread too Gumdoctor. My PET results showed it has not worked at all on my mets. Three months lost. Mets are much worse in liver and medistinal lymph node area. I'm not sure yet what TX I'll be on next.
Frustrated and disappointed. 💞
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