All about Xeloda
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I'm praying for you Suze....please keep us posted. Hope so much it is non cancer related. We are holding your hand, Honey. Just keep ta,ing those deep breaths.
Judie0 -
My finger crossed as well Suze. Thinking good thoughts for you. Seems like you can't stay very positive when the pain is so severe. I am sorry!
Without stealing any of Suzes post, is anyone on this low of a dose? 1500mg AM & 1000mg PM? I'm not sure my dose is going to be very effective now. HunkyDory
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Fingers and everything else crossed that this is not what you fear, Suz, and that X is still working for you. But whatever it is, I really hope they can get the pain under control for you and soon.
Good luck to all. Gentle hugs, Angelfalls xx0 -
Thank you all. Hugs & prayers go such a long way.
First things first.. the scans are all good, nothing on them could be causing the pain and everything looks stable with a bit of shrinkage. There are a few small suspisious things in one or the other of the scans but when compared together she thought it was all good! I am still an X Diva !!
The reason she called me in urgently was the scans were in and she wanted to see if she could further look into whats causing the pain. Dont know why I automatically think there's new cancer.....guess Ive been blind sided too often when I wasnt expecting it. Anyway its looking more & more like its the nerves in the elbow and its shooting pain down my arm to half the fingers, we did a few more tests today along with an exray of the left elbow. I have an appointment being set up for a MRI and a Neuro Surgeon. There is a surgery they can do.. something about relocating the nerve to the other side of the elbow. She has had it done and showed me the scar, it was 5 - 6 inches long but she said it was a fairly easy surgery and it worked for her. She also has increased the pain meds dose quite substantually. Dont think driving is a good idea as Im feeling pretty loopy.
Im hoping I can get into see the Neuro Surgeon quickly as the MRI wait lists here are really long.
Big happy hugs that its not cancer and crossing my toes that I can get these appointments asap.
Love & Hugs Ladies and as always thank you for always being there! Suz
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about mouth sores.. there is that magic mouth wash stuff. which quickly gets rid of thrush.. the white waxy coating on your tongue.
i found that eating a few drops of coconut oil REALLY helps with making your mouth feel better. it keeps it from getting dry.. i'd take a few drops 1/8th or a 1/4 teaspoon about every 3 hours works pretty darn good.. just try to keep it in you mouth to moisterize for as long as possible.. it's very good for digestion issues too and supposedlymoisterizes all skin and tissue from within. i really depend on it.. i have a 16 ounce jar in the bathroom and the kitchen.. organic for cooking. makes an excellent face and lip moisterizer too.
it also is great as a moisterizer for the hands and feet with gloves and socks.. maybe not as good as a thick creme.. but definitely good under the thick creme.. such a cetaphil or aquaphor.. nivea.. anything unscented because you need so much.
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Hunkydory,
I am taking 1000mg morning and same evening - only on second cycle and have no idea whether or not it is doing its job. I have no side effects, which is great, but is it working?
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Hunkydory -- I take 1,300 twice a day, and it has worked for me for 8 months now.
Suz: I replied to your other post, but it never hurts to say YaaaaaaaY one more time about no cancer-related issues!
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Just popping in to say hello.
Suze- that's great news about your scans.
I am finishing up my 8th cycle, and after tinkering with the dose, we have settled on 1000 mg in the morning and 1500 at night. My onc swears it is better to stick with a low, steady dose than to have to stop and start treatment due to side effects. My tumor markers have been dropping steadily these past 5 months on X, and I will get scans in a week to see how things look.
My feet are a chronic source of pain. Has anybody tried a nicotine patch for HFS? I read a little about it online, but I would love to hear from you.
My best to all my X sisters!
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YAY for Suz' news!!
HD, I take 1000 mg morning and 1500 mg evening as well.
Where did you read about nicotine for HFS?
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I was on 3,000 mils a day of Xeloda for two years (7 on 7 off). I feet were bad and then it started in my hands. I changed oncs because my old one refused to scan me. This new onc immediately took me off Avastin (said I was on it 2 long, two years). She also cut my Xeloda down to 2000 mils, 7 days on, 7 off. My hands and feet have improved and I don't get fatigued like before.
She said that the leading onc at Sloan Kettering feel that many woman are being over medicated with Xeloda.
Next scan is in June. We shall see. So far I have been stable for going on 3 years.
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I was on 3,000 mils a day of Xeloda for two years. I feet were bad and then it started in my hands. I changed oncs because my old one refused to scan me. This new onc immediately took me off Avastin (said I was on it 2 long, two years). She also cut my Xeloda down to 2000 mils, 7 days on, 7 off. My hands and feet have improved and I don't get fatigued like before.
She said that the leading onc at Sloan Kettering feel that many woman are being over medicated with Xeloda.
Next scan is in June. We shall see. So far I have been stable for going on 3 years.
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TXGigi- way to go with your stable self!
Links to nicotine patch info. Since the trials were a while ago, I am thinking the results were not that great. But that doesn't mean I won't slap a patch on my bod!
http://www.ncbi.nlm.nih.gov/pubmed/17022868
https://www.inspire.com/groups/advanced-breast-cancer/discussion/for-those-on-xeloda/
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Great news Suz! You enjoy that camping. I am on the other side of the state! Just ending my 2nd cycle tonight. (14/7). Not really having any side effects. should get blood work drawn in about 1 week and hopefully we will see the numbers heading south. Doc will rescan in May.
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Sorry angelfalls, I am late on the uptake...it is Ketocanozole 2% cream - just ask the onc and they will write the prescription and it works GREAT - the corners sores are gone within about 2 days. It also works for the inside the mouth sores as well.
The tearing eyes are typical and having lost my nose hairs, the dripping in made worse as there is nothing to catch it. Of course, allergy season is here and all is much worse. I just picked up a gadget yesterday - and I had to laugh - it is called the Sinugator. While the neti pot is wonderful for the nose and lower sinus keeping things moist and flushed, I just cannot seem to learn how to get into the upper sinus areas soooo...this gadget is battery powered to gently shoot the water and saline solution further up into the sinus cavity to drain even more - hopefully relieving some of the tearing associated with the sinus pressure - will let you know! My sister had recommended it - she has terrible allergy and sinus issues and she had gotten the waterpik version and was astounded at the instant relief from the drainage of the upper sinus!
Oh, and anyone that has any ideas on prosthetic nose hairs, my chemo room has been trying to come up with something...the latest is lower false eyelashes formed into a tiny cylinder and secured with a nose piercing to avoid blowing them out when the nose is blown. We do entertain ourselves instead of watching the drip, drip, drip....
Hugs all you Xeloda Divas!
LowRider
PS...found a new cream yesterday too - Carmex (the leader in cold sore treatment creams) has introduced a new line of Healing Cream - designed for the driest, roughest skin on feet, hands, knees and elbows - it is light and non-greasy and only a very light pleasant scent. It has a patent pending delivery system that really absorbs quickly and only a small amount is needed. Sadly, it does contain a vey small amount of paraben but with all the other natural ingredients, I think I will use it if it really works. Ah, what it would be like not to feel like I am walking on pillows!
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My pills arrived this morning, start 14/7 tomorrow. Hoping finally for something that works and is kind to me.
Stopped by Kohls just now and the earth therapeutics stuff is on sale. Gloves and socks were about $6. So I bought their foot remedy lotion.0 -
Hello Dear Divas!
Went to see my Onc yesterday and yup am starting cycle 8 of 7/7 se's at this time are minimal, mostly dry feet with a bit of cracking where the toes meet the feet. Im hoping they dont start splitting as in past years Ive been prone to it. Other than that and a bit of sensitive fingers along with fatigue Im ok with it. Cant believe Ive already been on it for 6 months! On the official scans & bloodwork looks like the tumors are holding steady and my tumor markers are also the same. She said as long as Im tolerating it so well I can stay on it till I get fed up with being on chemo.... ummm not thinking that will happen anytime soon
On the issues with the nerve pain in my elbow & left hand the drugs I was getting (hydromorphone & lyrica) were not working at all! I was in tears the moment we started talking about it. The pain was agonizing and nothing was releaving it. I was at my wits end and didnt know what to do for it. The MRI and nerve conduction tests are both on a waiting list, not even sure how long the waiting list is? Anyway she saw that The meds were not working so I went back to the pain clinic for a re-evaluation. As much as even the name of it horrifies me they wanted me to start on methadone (
) I didnt want to as I have a picture in my head of drug addicts using it. They talked to me for a while and explained why methadone would work as compared to hydromorphone & lyrica (both high doses) So in the end I went on the program of switching the meds which is a very slow process. They said I wouldnt notice anything for at least 3 day but lo & behold not even one day this morning and for the first time in a month the pain is barely noticable. Ive had 4 different doctors & pharmacists tell me that this works incredibly well on nerve pain but I couldnt seem to get over the stigma.... Ohhh Im so glad they talked me into it!!! Cant wait to get off the other drugs!! This is an absolute godsend!Gotta run, Love & Hugs Gals will talk soon xxx
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Wow, methadone for pain. That fascinating. And so glad it worked.
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Suz45...I want to let you know that the methadone does work extremely well but also a caution...don't deviate in any way from the dosage, be very tuned in to how you are feeling and report any odd feelings to the pain team. There are little to no contraindications with other medications but be aware of combining any other pain medications and/or anxiety relief and anti-depressants - while there are no contraindications, they can have other side effects such as memory loss and disorientation.
Please do not be alarmed - and please don't be concerned about the 'stigma' - methadone alone will give you continous relief from the nerve pain for a very long time without the need for additional drugs. So if they should want to add any additional meds, ask questions and keep informed - you will have a great quality of life!
I went through a horrific experience and I don't want to see anyone have the same thing happen - my pain was so bad that I was on the methadone, dilaudid, vistaral, xanax, ativan, effexsor, some nose spray along with some other stuff that the pain management team had me on. After 5 1/2 months, I thought I was ready to just lay down and give up - I am now back on my old regimen and thriving.
Suz...enjoy the relief and just be careful - it really is a Godsend for anyone with the extreme nerve pain and I am so happy for you that you made the decision to get past the stigma. I wish you the best with your upcoming tests and keep us posted!
Many hugs
LowRider
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Hoping not to go back and read the whole thread again, but I want to start tomorrow and should have clarified this with onc but it's been a busy day.
I take Aciphex and have found no indication of a bad interaction so if anyone had trouble with Xeloda and Aciphex let me know. I have some left over Promethezine and Compazine for nausea and want to know if I should take one or the other a bit before the Xeloda tomorrow morning just in case. I'm trying to coordinate with a light breakfast and then dinner.
Ready to take the dive into the deep end.0 -
So glad you've foudn something that is working for you, Suz! Big hugs!
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Chickadee...I am 7on and 7off and am due to restart tomorrow...I have never had any nausea from it at all. Take the dive and become an X Diva!
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So far so good today.
These first days are always the oddest. You stare at the bottle and wonder what is in store for you. It's not like taking Advil where you know your fever will come down or a pain will go away. You are popping a pill which can go either way and the uncertainty is just another pain in the ass.
Bottoms up!
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Cheers, Chickadee...be joining you tomorrow with round number 12 of 7on/7off!
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Cheers Chickadee & Lowrider
Im 7/7 as well (1650mg twice a day) I start my 8th cycle today and Ive not had any nausea issues either.Lowrider, I genuinely thank you for your advise! I read about your experience and am so glad your ok. {{{hugs}}} my dear lady!
Hopefully I wont have to take this for any length of time, I plan on being off the hydromorphone & lyrica asap and will be pushing for the fix (surgery) rather than the bandaid (drugs). Its supposedly a simple surgery once they positively identify that this is the right nerve. So again I wait for a MRI or a nerve conduction test.... whichever I can get into first.
The pain management Doctors did tell me to inform them of ANY medications I plan on taking and gave me a sheet to pass along to my pharmacist as well before I take anything new (both rx and otc meds) I will say I have incredible pharmacists.... they have caught quite a few bad drug mixes over the years for me. Lol, they are actually quite protective of me and go out of their way to spend a few minutes talking about how Im feeling and whats going on in re: to my health. You don't see that much around here and I really appreciate them.
Hugs X Diva's and Happy Easter, Suz
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Second day on X and my left ankle/leg is swollen. It swells in the heat anyway but this is a bit more. I tried wearing a compression sock today with little effect.
Any tips.0 -
Chick, that's weird about your leg.....hope you will call it in.
I believe many of us took prilosec-type meds and then ate something before taking Xeloda. Also, I and some others had unpredictable SE's. Would feel fine, have some random diarrhea, treat it, etc. Also random fatigue.
Best of luck, Chick.
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Well I started my 4th cyle of 14/7 yesterday. Have an onc visit tomorrow and Pet scan later this week. Have convinced myself it is working since my voice is back to normal. My biggest tumor is in my trachea and makes my voice sound gravelly. To me it sounds nasal again-wishful thinking.
Hating this stuff but if it works I will be glad to continue. I have lost 30lbs thru the first 3 cycles. The stomach stuff is just brutal. Also days at the end of the cycle I am only able to walk on my heels. The balls of my feet are so sensitive I can't put any pressure on them. My fingertips are all peeled back and sore.
I had asked about the 7/7 before but he won;t consider it at least til we see what the scan shows. And if it shows good stuff I might be afraid to dial back to the 7/7. He is of the opinion the therapuetic level is better on the 14/7 plan.
Hope everyone is having a good day. I have a run of about 7 good days when I first start taking the X again. Then off week is my worst week by far.
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Hi Chickadee...do report the swelling...I did have some initial swelling when I started on X back in October...it does fade. I also wore the compression socks - they will work in a short time and they do help you feel better. After the swelling stopped and the 'funny feet feeling' started, I switched to diabetic socks...they let your feet breathe and help contain the slathering of moisturizer that I do twice a day at least - so far, no cracking, peeling or anything but the neuropathy. Keep your toenails and figurenails clean - I use an alcohol swab in the area on the sides of the nails - as the skin thickens, it can allow bacteria to get under the nail and cause the nail lift and potential loss of the nails - so far, not even a tiny bit of lifting - I think I have become addicted to doing my nails and it isn't a bad thing...LOL. I checked this with my onc and he seemed to believe it was a good idea.
Suz...so glad I didn't scare you off the methadone - sounds like you have it covered all around and enjoy the relief! My pharmacy is tuned in as well and they have now flagged my chart to question any and all new medications to ensure they are necessary and in addition to checking for contraindications (which none of the meds had, ironically), they are going to check for any other reactions. At the onc's office, my chart was totally reviewed and noted the incident so that it does not happen again. I also have signed a release of information to ALL of my treating facilities to have access to my records. Covered my ass well as I never want to have that experience again! I am so glad that I ended up hiding the darn things on myself (with Divine intervention I am certain) and was able to wake up on January 18th being able to function again! Whew!
Hugs X-Divas!
Low
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Swelling settled down somewhat overnight but I left a message anyway. No other issues yet but I know it's early in this new protocol. Thanks.
Should I start the slathering and cleaning now?0
