All about Xeloda
Comments
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Goldie you might also want to try putting a cup of Epsom salts in the water and see if that helps.
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BuckeyeAmy, the HER2Climb trial and Xeloda have officially failed me. I´ve had three cycles. I joined the trial because I have skin mets, and the phase I trial showed very promising results on skin mets. I may have been in the placebo arm. Today my MO finally realized that I´m immune to all the chemo drugs and HER2-targeted therapies available, and that she has to think out of the box. On one hand I´m kind of relieved that I´m done with Xeloda/HFS in addition to the pain from my extensive skin mets. On the other hand it´s really scary that apparently no treatments work for me.
I wish you all a very long run on Xeloda with minimal SEs.
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ADDK, just throwing ideas out there. Did you try to look into immunotherapy? I know Foundation One is really expensive in Europe but if you can afford it, it might help you pick some relevant clinical trial to your specific case. I know for sure though there are now companies that are developing their own test and it's cheaper than sending your specimen all the way to the States. I easily found some for Italy when I looked up, I am sure Denmark might have some. Also, I was just reading yesterday about some promising clinical trials with Taxol and other agents done in Denmark of all places.
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Daniel86, thanks a lot for your input which I really appreciate. They have squeezed me in for a scan tomorrow to find out if I still have skin mets, only. In case of organ involvement I guess in any case I´m due for yet another round of some kind of chemo. Otherwise, I´ll be transferred to the experimental unit of my hospital that does genomic profiles, researches in immunotherapy a.o. In addition, I know of two on-going trials for HER2+ cancer at my hospital. Depending on the scan results I´ll look deeper into these.
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Finally signs of intelligence are being observed coming out of the medical community, although this article was published by the Telegraph—the equivalent of Fox News—so take it with a grain of salt.
Il seems that a bunch of cancer researchers have decided to analyze the DNA of the carcinogens associated with each individual cancer, to determine the origin: ie patient's exposure to certain pollutants, or carcinogens found in workplaces, neighborhoods, food supply, water etc etc, instead of continuing to analyze and treat the symptoms that constantly change as the cancer progresses.
What a concept! They actually want to understand the causes!!
So may God help us and them in this quest.
May we all soon be told how we can change our lifestyles and be given the right medication targeted that that particular carcinogen.
Cause of cancer is written into DNA of tumours, scientists find, creating a 'black box' for origin of disease
https://www.telegraph.co.uk/science/2019/04/15/cause-cancer-written-dna-tumours-scientists-find-creating-black/0 -
Wow Miramix!!!! Thank You for posting this news.
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miaimix,
Thanks For The info.
I allways wonder why there is a link between some Cancers and certain Pullants , But .. Somehow BREAST CANCER has never been indentify with any specific pullants
Breast cancer is one of the most publicized cancer, the one witch receive allot of publicity and money.... But still we don't have any information about how we got it , or how to prevented .
i hope we will see the day that Breast Cancer won't be anymore a deadly deasease .
Thanks for the info
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I still don't have my X. Grrr. Some sort of insurance glitch. Have I said I hate insurance companies recently? It makes no sense because they approved it for me with no co pay in February, then I changed doctors, and now they won't approve it? Crazy
My MO said to get a cream with Urea in it, OTC, and if I need stronger she will RX. Any better suggestions? I'm ready to start down this road but I cannot start without the pills!!!!
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I am getting X delivery tomorrow. Yay
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Grannax, so glad you are finally getting your med!! Good luck with it! I’m on it just about a week now but have to go off early and be off for 2 weeks because I am having the stent in my kidney changed next Wednesday. But at least I’ll get almost a full cycle in before I have to go off
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Hi all,
I just failed right out of the gate with Ibrance. I am guessing Xeloda is next. Has anyone here had no luck with Ibrance but improved on Xeloda?
Thanks!
Diane
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Grannax start with the cream you have, it might be enough depending on the severity of the symptoms. I hardly have any after nine months. I found a peppermint foot spray to be a great relief when my feet get hot and sore before applying a generic foot cream from TJ's.
I also lightly sand down my skin when it gets dry and rough instead of ripping it off
DianeEliz....I failed ibrance and been doing well on xeloda, but tomorrow I'll get the results of a recent pet scan and will find out if I can continue to be on this treatment.
Good luck to all you ladies that are just starting out on X.
I find X to be the best treatment in comparison to all the others especially Afinitor and the hormonals.
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We did not fail Ibrance. It failed us. I had one year of Ibrance maintaining the great job Taxol had done, then the second year of slow progression (first in TMs then finally on scan). But Xeloda took me to NEAD and has stayed that way for almost two years. I agree with Miao, X is my favorite treatment. What a strange life we lead to have a favorite treatment.
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Thanks, Miao and Shetland, needed words of encouragement that hit the spot. What would we do without one another? I was just hoping for ANY time on Ibrance. Cancer sucks. When I got the scan results could barely hold it together in front of my 10 year old, but I did. She knows the broad strokes of what is going on, don't want to take her on ever bump in this road. Oh the humanity sometimes. We live to fight another day.
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Yay Grannax. I just started cycle 2 today so we will be on the same schedule. Let's walk this together and hope for maximum efficacy and minimal side effects!
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Dorimak. YES, together. My son, age 45, said we should re name Xeloda as one of the X-Men. I've never watched X-men so I'm clueless about which Mutant to pick or should we create a new one just for us? He said there are female ones, but they don't sound very nice. Of course we don't want xeloda to be nice to our mets! We want X to seek and destroy. It would be nice if we could have an x-men to rebuild body parts, I have a couple of boobs that need replacement. Lol I just realized I don't have a clue how X actually works, I just am hanging on those of you who have had good results.
Thinking of you, Mia. You get results today, Wednesday? I remember asking about creams etc when I was on X for two weeks in February. Thanks, again, for the info. Peppermint spray sounds great, ripping off blisters does not.
Shetland, I agree we live strange lives, speak a strange language, are motivated by things most people never think of. Glad we have each other, regular people do not know how to break our code.
Yesterday I spent four hours trying to blow all the leaves out of my backyard. My motivation: I start X today, thought I better try to do the hard yard work before I get blisters on my feet and hands. 💞
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Hi all...unfortunately my Xeloda days are over. (For now....maybe?)
The recent pet found a small lesion in the liver ( my first) and more bone mets.
My MO called, he said they will do a biopsy to determine what to prescribe next....but he also said that it might be too small to biopsy, he has to check
I'm sad and don't feel like switching but I had been feeling a small twitch in my right flank that seemed suspicious. I can't think of another medication I'm ready to accept right now, but I'll surely change my mind once I carefully look at all my options.
All you newbies enjoy this relatively harmless treatment and make it last
Grannax, in my case I didn't get blister....xeloda dries you out...you'll find yourself going to the bathroom a lot! The skin of your hands and feet gets so dry that whole areas start peeling off...I found it this easier to gently exfoliate before moisturizing, instead of loosing whole layers of skin....
they have to be smoothed somehow as they get caught on everything. No cream will ever soften them long enough, unless you don’t use your hands period!
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Miao, I'm so sorry to hear your news. I believe that Grannax had a small lesion on her liver, which the oncologist said they might not be able to biopsy, but she pressed them, and they did. Grannax, correct me if I have this wrong. Also, I thought that X was good for liver mets? Hoping for the very best for you and a very tolerable treatment. Keep us posted.
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thank you Lynn...I was hoping to join the ladies for whom it's still working after so many years, but that was not meant to be. I knew something had changed when during this last session I didn't experience the usual SE.
If I'm still estrogen positive I'm going to ask my MO if I can go back to Faslodex and ibrance and see if I can get some mileage out of that combo before going to the other untried and more invasive treatments.
I will keep you guys posted, meanwhile may you and everyone one else enjoy and get good long-lasting results with this treatment.
You know what’s strange? I have been more active and pain free than ever before but here we are....cancer is a strange beast indeed
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Miao, have you done the Foundation One genetic testing yet? That might provide you with some very valuable information. I read the Oncology Business Review daily email, and it's amazing how many studies are ongoing related to various mutated genes. If you have not had that test done, it might be worth doing.
Also, if you are unfamiliar with the OBR Daily and want to p.m. me your email address, I'm happy to forward you one of the emails. You can sign up to receive the daily issue. You have to assign yourself a role. I chose volunteer, since I'm not a doctor or a nurse, for example.
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Lynn thank you so much for this information. MSK has their own in-house labs for determining the genetic profiling of biopsies so I think that's what they'll do this time as well. He said that if the lesion is too small they will take it from the bones. ( truth be told, I've been self medicating with Aromasinin, and I could simply have an inflamed liver, the SE from that med, which I stopped taking today, hopefully by next week there will be nothing to see, I'm praying)
Complicating things, I have the ILC type of cancer, thus medications that work for the IDC group don't necessarily work the same for us. One of my mutations was the AKT, but based of my past terrible experience with AFINITOR, I have already told my MO that I'm not taking any new reincarnations of that drug.
What I really want is Herceptin, but that's for brac2 type cancers, and my MO said it's unlikely that my cancer has mutated in that direction.
I'll PM you my email....thank you Lynn!
Please don't laugh...I know this is crazy...but I just placed a warm pack of Castor Oil on the liver site that hurts and wrapped the cashemere soaked pack with Saran Wrap to keep it in place! I know it must be just auto-suggestion butI have to admit that I'm experiencing a huge relief like something inside is relaxing...it's an ancient remedy that was used to detoxify the liver before chemotherapy came along....desperate times call for desperate measures....
Ps: after heating the castor oil repeatedly on the stove—very boring—I realized it was easier to wear a heating pad over the pack and voila...maximum comfort without the hassle!
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Miaomix- so sorry to hear about your progression- I do hope the liver is not cancer. There is a subset of ILC that gets a + Her, I think that it might be Her 3- that could prove helpful. Most MOs treat ILC the same- although there are some trials in Europe for ILC that could prove that the treatment should be different. I wonder if going to Abemaciclib might make more sense if your MO would go back to a CDK4/6 since it is not dependent on the hormonal to work. I did not find an MO willing to do that - studies are being done now to see if it makes sense or not.
If you have a PI3K mutation- perhaps the study of Alpelicib- though it is the same pathway as Afinitor just in a different place- perhaps fewer side effects. It did have a PFS of 11 months, but, is in trials still and you have to prove that you have a PI3K mutation.
There is a study with oral Taxol, also oral SERD, Morpheous study etc. But, Morpheous study as Fulvestrant as a control arm and that didn't work for me- so would be a poor choice if you have already failed fulvestrant.
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thank you NKB...I will run some of these ideas by my marvelous MO on Friday. I want to go in prepared, and I would take the meds you've mentioned if I qualify.
but probably no decision will be made till the results of the biopsy comes back....
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I did have y90 for mets in my liver. It was effective for 18 months. So sorry, progression is the pits. I hope they will offer you a TX that be effective but not too harsh.
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Thank you Grannax!
i have now moved the oil pack and the heating pad to my lower back where it's been hurting a lot lately...and voilà.... i'm experiencing the type of relief that my fentanyl patch never afforded me. I am stuck laying on the couch though which is quite limiting for this cat
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Miaomix - I said the same thing to myself. I was so surprised that there was progression because I was telling everyone how much better I feel!! My husband said did I lie? I said not at all. But I've been doing acupuncture, massage, meditation/breathing, reiki, slowing down work, getting regular exercise, eating better..... was told I LOOK great which I have to agree :-) My acupuncturist said focus on THAT of course that is hard, once you have the scan results. It is very weird to feel better and actually be worse according to the scan. I need to get to the place where I can just focus on the present
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DianeEliz I hear you! All aspects of cancer and the prescribed treatments are weird and contradictory....like you I plan on doing what I know is right to increase my health....
tomorrow morning I will get back to doing coffee enemas to detox the liver from all the accumulated toxicity of the cancer medications.I will pull out my champion juicer before I go to Whole Foods to load up on green vegetables, beets and carrots. It's a lot of extra work, but the drinks are delicious, the enemas make me feel 10 years younger, and all this can't hurt because I know how great I'll feel afterwards.
Tonight, just applying the heated castor oil packs resolved most of the aches and pains i had been experiencing for the past week....much more effective and faster acting than my pain killers...
The show must go on regardless of what our PETs indicate....best wishes to you my friend!
Does anyone know of a clinical trial in the NYC tri-state area where antifungal medications are administered in combination with the usual suspects? I would gladly volunteer for something like that....
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Miaomix, oddly I asked my MO today about going back on Ibrance and Faslodex but she says I am doing well on Paclitaxel and we will carry on with it. I star cycle 6 tomorrow. She did say that if ever there was evidence showing Ibrance and Faslodex would be worth a try and I needed it, that it might be possible since our cancer agency did not pay for mine so they really don't know. I hope for you that you have a good meeting with your MO on Friday and that there is no liver progression.
Marian
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thank you Marian for that information....many wishes of continued success with your current treatment.
I will let you know if my MO thinks it will be a benefit to try that again...a lot of it depends on the results of the biopsy.
I'm dreading this disruption to my peaceful coexistence with Xeloda.
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Hi dear friends...It’s official, I will be starting Xeloda as soon as my pills arrive from the specialty pharmacy. My doctor did a fine job explaining potential side effects. I’m told that if I ever have a fever of 100.4 to call immediately day or night. IV antibiotics may be needed as my immune system will not be able to fight the sickness. I’ll be taking 3 pills Am and Pm. My brain shut down for a moment, but I think he said that equals 900 mgs. Does that sound right?? Also, 2 weeks on and 1 week off. I’ve enjoyed a 2 month holiday from AA but now it’s over. Praying for success for all of us on Xeloda.0
