All about Xeloda
Comments
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Hi, for my third cycle of Xeloda the dose will be reduced from 2 x 1,450 mg a day to 2 x 1,000 mg. a day. I´m on a 14 days on, 7 days off schedule as part of a clinical trial. I asked my MO today whether the lower dose would be less effective. She couldn´t say for sure, but due to SEs the dose had to be reduced . The point of my MO was that lowering the dose would give me a longer run with acceptable SEs. I think it really sucks that I have to economize the number of steps I´m taking.
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ADDK....MSK developed the 7 days on and off schedule because they found that too many patients refused the medication because they couldn't put up with the hand and foot disease.
But taking less medication will probably achieve the same results. Good luck to you ADDK, please keep us posted on the results as you proceed with this trial.
Do you know what the second medication is? Or is supposed to accomplish in combination with X
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Shetland,
When a cancer is scored as ER-positive, it is because the estrogen receptor is present, and they can see it by staining the cells (and score them by how many cells have ER expressed, 50%, 70% positive, etc). However, this does not tell them if the estrogen receptor is working normally, and if it is driving the growth of the cancer. When the PI3K kinase becomes mutated and active, for example, it takes over the controls and drives cancer growth independently of estrogen or the estrogen receptor. In that scenario, the ER is still present and will still be stained, but it is useless to the cell.The goal of the PI3K inhibitors then is to block the PI3K pathway, and the cells then just revert back over to the ER and use it again. Triple-negative, by contrast, means there is no estrogen receptor expressed in the cancer cells and they have no mechanism to ever be senstive to AIs or Faslodex.
Joyner, if the triple-negative cells are skin mets, can't they be electrocuted/zapped in some way that dermatologist-oncologists? use to treat skin mets, since they are located on the surface? I don't suppose it would necessarily mean that you also have triple-negative mets in other locations on the body?
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Curious, that's a really helpful explanation (albeit disappointing for me). I think I'm either 90 or 99% ER+ and 20%PR+ and just have not been having a good response on the AIs. That explains it. Sounds like my receptors are there but not functioning. When I went on Faslodex, MO said he had women on it for years. He explained that it worked by plugging the ER receptors. It didn't work for me. Wonder how the ER receptors get that way and if there's anything they can do to get them working normally.
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I have read, (grain of salt needed here) that estrogen and progesterone need to be in balance. If there are tests for this, I do not know. Husband, since you like to research perhaps you could check out this angle? for us. Just a thought. Bye the bye two different anti-hormals did not work for me either.
There also is a lot of research regarding (oh geesh there's a name for it) zeno?, anyhow these are substances that leach from plastic products made from petro chemicals. Our bodies think they are estrogen not synthetics .Supposeably, one should not store food in any sort of plastic. (dry foods in plastic is suppose to be ok)
Also, carpet and furniture has substances that leach from them for years. I could go on and on but, it does seem to make one want to run for the hills. In a nutshell, our bodies have been exposed to chemical substances, EMF fields, a totally new way of agri -farming and it messes with our immune system. Please folks, these are my beliefs, I'm not pushing them on anyone.... Just trying to make sense as to way the cancer rates are going up in last 100yrs.
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Miaomix, thanks for your kind words. I´m on Xeloda+Herceptin+tucatinib/placebo. I understand from your profile you have been on Xeloda since June 2018. I´m really impressed. How are you doing?
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Cure-ious, thanks for the explanation about the PI3K inhibitors. I find it difficult to get all of this straight, and a clear, simple explanation is so very helpful.
On the skin met: I am told that it reached my forehead via the lymphatic system. The Xeloda appears to have zapped it, as my oncs hoped it would and interestingly, the dermatologist told me that Xeloda is one of the cancer drug regimens (there's a name for this category, but I have no idea what she said) that drives pre-cancerous basal cell carcinoma-type skin cancers (what my mom used to call "barnacles") to the surface early prematurely and dispatches/kills them while you're on the drug. She alerted me to be on the watch for red spots which would appear and then go away. She was entirely correct.
I'm not sure why the cancer in the lymphatic system would be triple negative and that in the bone ER+ (50%), and the only way to test whether the bone remains ER+ would be another invasive bone biopsy, which they're unlikely to do for a while (last in mid-December, 50% ER+).
SO....I remain in the dark as to whether a future organ metastasis would thus be triple negative as a result of the lymphatic experience. I'm guessing that the oncs would expect it to be. I didn't think to ask.
MSK doc said that we treat for "worst possible", which is the triple negative manifestation. To make things even more frustrating, the skin met biopsy didn't get many cells, so the biopsy was, to my reading, not a slam dunk. However, when they went back to take another slice at my request for verification, there were no cancer cells (because, apparently, Xeloda had killed them). They tried re-testing the initial slide, but there wasn't enough tissue to do so. I was told that their conclusion was that the initial path report was accurate. I am unconvinced, but I also believed in the tooth fairy for quite a while, so......
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hi ADDK....I’m doing quite well so far on xeloda— no hand and foot disease— but I’ve been on it only since June of 2019.
Since I haven’t had a pet scan in 5 months, I’m not sure if it’s still working. I’ll find out in april....
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JoynerL...for what is worth....I read somewhere ( I think it was in a book on cancer written by MO Simoncini) that he successfully healed skin cancers by the repeated application of iodine on the skin leasions. Apparently, a scab forms and when it falls off, new healthy skin is regenerated. Problem solved.
Since iodine is a well known disinfectant, it might not hurt to try, just in case your distrust of your doctors assessment proves to be correct and Simoncini happens to be right
Wishing you the best outcome with all your TXs
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Thanks, Miaomix-good thing to try when (and if) the next one appears!
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Cure-ious, Thanks for the excellent explanation on PIK3CA inhibitors! I have that mutation and have been watching the alpelisib trial closely. If alpelisib becomes available soon, it would be approved in combination with either Faslodex or letrozole. I've already progressed on tamoxifen(from Stage 1 to IV), letrozole (after an effective 18 month run) and faslodex(didn't work at all). I have not tried exemestane, so maybe that could be combined with alpelisib. Although, from your description, it sounds like PIK3CA inhibitors may make previously-utilized hormonal treatments effective again. I also developed an ESR1 mutation while on letrozole.
JoynerL - I had what looked like a cyst on my upper back. It turned out to be a skin met (ER+/PR+ even though I've progressed on many hormonals). They removed the skin met, but did not get clear margins. The surgeon told me that it looked like it had spread through the lymphatics. The oncologic dermatologist also told me that Xeloda would treat any remaining cells and that precancer and early basal cell cancers would be treated by Xeloda. I guess that's a bonus! I'm sorry that you were not able to confirm with a second biopsy that the skin met was in fact triple negative.
Thanks for all the information sharing! It's nice when we are actually hearing the same information and also useful when our doctors have different opinions. Knowledge is power! Theresa
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Thanks, Theresa....so interesting! I felt as though I were the only one with this experience!
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Miaomix, great that you don`t have hand/foot issues! All things considered, compared to so many other chemo treatments Xeloda is quite manageable. I’m convinced that your scan in April will show that it`s working for you
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Hi all and welcome dorimak. I've been enjoying a month off meds after a bad time with AA. I am finally moving on to X. Dorimak, I think I will be starting on Saturday. I am close to you/ I am 5'4" and weigh 138. I'll be starting 1000 mg Am and Pm 14/7. Also having a biopsy by bronchoscope to see if cancer has mutated from Estrogen + to something else. I hope not any nausea or Dia/Con, but that is probably wishful thinking. Your posts are so important to me, so thank you all. Blessings to everyone.
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Nancylm, hopefully given your lower dose you may do okay with side effects. I have a littla nausea mostly in the morning probably because my evening dose is not taken with as much food. I drink ginger tea. Not sure if it's helping but I generally feel better as the day goes on. I find calcium carbonate tends to constipate a bit for me so day one when I felt like things ere getting loose, I started taking the calcium. I had a consultation a few years ago with an integrative clinic at our university hospitial and they recommended magnesium citrate "to keep things moving" so I figure I have natural supplements to address either issue. Good luck with this treawtment.
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Cure-ious, Thanks for the excellent explanation on PIK3CA inhibitors! I have that mutation and have been watching the alpelisib trial closely. If alpelisib becomes available soon, it would be approved in combination with either Faslodex or letrozole. I've already progressed on tamoxifen(from Stage 1 to IV), letrozole (after an effective 18 month run) and faslodex(didn't work at all). I have not tried exemestane, so maybe that could be combined with alpelisib. Although, from your description, it sounds like PIK3CA inhibitors may make previously-utilized hormonal treatments effective again. I also developed an ESR1 mutation while on letrozole.
JoynerL - I had what looked like a cyst on my upper back. It turned out to be a skin met (ER+/PR+ even though I've progressed on many hormonals). They removed the skin met, but did not get clear margins. The surgeon told me that it looked like it had spread through the lymphatics. The oncologic dermatologist also told me that Xeloda would treat any remaining cells and that precancer and early basal cell cancers would be treated by Xeloda. I guess that's a bonus! I'm sorry that you were not able to confirm with a second biopsy that the skin met was in fact triple negative.
Thanks for all the information sharing! It's nice when we are actually hearing the same information and also useful when our doctors have different opinions. Knowledge is power! Theresa
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Is anyone still taking Tamoxifen while on Xeloda? I start with Xeloda on Tuesday but have not been told to stop Tamoxifen. I asked the nurse yesterday and she said it is down to my oncologist to make the decision. Have left a message for him but just wondered if it is usual to be on both
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Just popping in to give everyone prayers and positive thoughts on your Xeloda journey. I pray that you all get minimal side effects and the treatments are effective!
Liz just started her 4th cycle (14on/7off) today. She had to stop the treatments because she had some prophylactic surgery done two weeks ago. There is some bone mets in her femur and they recommended IM nailing of the femur to prevent a future fracture. The recovery has been difficult due to all the pain. Liz is managing with only a cane after Day 4. Unfortunately the pain is disrupting her sleep as rolling around in bed causes pain. I just pray that the recovery is quick and pain disappears...
Grant.
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JoynerL - I also felt like I was the only one with this weird skin bump met far away from my breast. The oncologic dermatologist thought it was just a cyst until I had it removed and sent to pathology. Although the surgeon told me it looked like cancer with lymphatic involvement even before the pathology came back.
Grant - I'm sorry to hear that your wife liz is having trouble sleeping due to pain from the femar surgery. When my dad had knee surgery, my son carved one side out of a medium carboard box so that the covers would not pull on his knee while he was sleeping. I wonder if something like that might work for liz. By the way, did she have bone mets in her femur or was the damage to her femur from Xgeva or bisphosphonates?
I'm on my off week from Xeloda and for the first time my feet have recovered really well during the off week. I added a B6 supplement, so maybe that helped. It's hard to know.
Best to everyone! Theresa
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With summer sandal-wearing time approaching, I guess I will be putting a band-aid on my right toenail to hide it. There is only about 1/4 of the pink area left.
My feet are really sore and raw and I am only on 2,000 a day...one week on, one week off.
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Denny....maybe you can reduce the xeloda since you are already on Herceptin. From my perspective, Herceptin is the only drug with a proven record to work consistently for years instead of weeks....
ask you doctor.....having raw feet consistently doesn’t seem right....
but you are a long term survivor and maybe I should just shut and learn how to survive MBC from you.
My best wishes for continued success!
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Ohhh, Denny, I can’t imagine putting a sticky bandaid on Xeloda skin. Somewhere in my research I read that sunlight on chemo toe nails is not a good thing; it can cause more discoloration. How about some closed-toe but airy shoes made with a sort of lace or crochet material, or cut leather — full of holes but covering the toes?
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This talk about skin bumps is very interesting to me. When I first started Xeloda I got a few red marks on my legs and one on my face right under the left eye. A few days later I got a matching one under the right eye. I think it's weird how some of the side effects are bilateral. My feet were the same way with the sore spot being on the exact same spot on each foot, one a little worse and a few days sooner than the other. Not very long before I stopped xeloda I had a bump on my right shoulder, like a mosquito bite. Kind of unusual but there were more mosquitos than usual due to all the rain, so I didn't think much of it. Very itchy and time I touched it and it felt bigger. By the time I got to the mirror it had opened and clear fluid came out. Strange. about a month later I had a scan and that area glowed big time! The report said it was the muscle that had the active area. Before the itchy bump I had a tetanus shot, but all 3 of these things happened far enough apart that my mind didn't put them together. It healed normally so I guess I won't know what it is until the next scan. My dad got cancer at the injection site of a flu shot years ago. It get sore and never healed and had it removed about a year after the shot. He never got one again. I told my new PCP about it when she tried to push the flu shot on me and she gave me a boring lecture about the myths of flu shots like I was an anti vaxxer. That got a bit off track but just wanted to chime in about the skin bumps.
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Denny, my dose was reduced from 2 x 1,450 to 2 x 1,000 mg (2 weeks on, 1 week off) because I could barely walk on the higher dose. Perhaps a dose reduction is required since your feet do not recover during your week off? I´ve learned that pure silks socks are better than cotton socks (expensive, but worth every penny), that I must wear socks at all times, and that I should only wear sneakers with soft inners soles - no more fancy shoes, and no bare feet in sandals :-( I use a cream with 63% fat content morning and evening on my feet, which are hot, red and sensitive, but my skin looks okay.
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Good day to everyone here. Just posting that my sister will be moving on from Xeloda after almost 6 years. I have gained great hope and knowledge from everyone here. She is doing and feeling good. Her CA has been creeping up, even though a scan in late Dec showed zero progression.
She was on every dosage tried, it is a great drug. I hope everyone has the sucess that she did. Her ONC thought of maybe trying the Afinitor combo, but she never repsonded to hormone therapy.
Sister is starting Havalen. Anyone have any quick thoughts? Or somewhere to read a forum? Thanks so much.
Mark J.0 -
I am about to start Xeloda so good to hear that 6 years is doable. Can't really help with your question, but just wanted to say thank you for posting. Feeling apprehensive about starting this treatment!
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Mark, my experience is not such that I have any valuable input. However, I am sending you and your sister my very best wishes for success in the future. You're lucky to have each other.
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ShetlandPony….I was able to wear Skechers sandals last summer, but now my feet are worse. Will see how it goes. As far as sun on my toes, I don't get out much at all. This stuff has made me a hermit.
With the cold weather, I wear thick socks and closed toe Skechers. But with capris in the summer...….nix to socks.
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I am not on Xeloda anymore but echo sandals were great for my sore feet.
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Kamala1962, its amazing that your sister responded for 6 years!
This is the stage 4 thread for Halaven : https://community.breastcancer.org/forum/8/topics/.... That being said, I was on Halaven for stage 3 (in place of Taxol) and found it quite doable. It was the easiest chemo I was on and also the most effective.
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