All about Xeloda
Comments
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The Gabapentin will make you very sleepy!
As for the HF - I had It it so bad I couldn’t hold a utensil or walk.
This time as it started popping up MO had me hold off. Within 2 days it was much better and I resumed X.
Lotions don’t prevent it but will help soften the skin peeling so it doesn’t crack or bleed.
I would contact MO about diarrhea because they have other meds to help.
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Mel.....
if you have a chest port, probiotics can cause an infection in the port.
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Mel keep us posted how / if the diareah gets better and/or if the probiotic helps.
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Has anyone gotten their labs on the off week and on their on week...if so...were the liver numbers or Bilirubin in particular higher on your on week???
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Hi ladies. I dont have a port but I do have a Nephrostomy tube which is infected again. Joynerl I believe the gabapentin is causing bad sleepiness. I finally got lomotil or whatever its called today and was able to take a dose. I feel like it has slowed the diarrhea down and hopefully I will be able to stop it tomorrow with multiple doses. Im with everybody else ither then taking this break from chemo i dont have a solution for the hand foot syndrome. Ive used gel gloves and every kind of cream. My onc is insistent on me taking vit b6 for this. So Ive bought it. I just have so many pills. Do yall take a lot of pills? Oh and I wanted to ask if yall normally have abnormal bloodwork? What is bad to-be abnormal? My platelets are low and rbc is low. Something about carbon dioxide But what is really bad? I didnt think it was that bad. Anyway enough of my whining. How is everyone doing?
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Mel, Since you have the Nephrostomy tube, Probiotics should probably be avoided.
What does your onc say about your levels?
When I was on Gemzar, my platelets were low and I bought RED grape juice and it really did seem to help, since my platelets did go up.
I was told by my chemo nurses to take Biotin and B6 for my hands and feet. I don't know if they really help, since I am sitting here with my feet on ice packs since they are on fire today.
I do take a lot of pills, but they are all nutritional supplements....Centrum Silver, Vit D3, Calcium, Vit C Pills, Biotin, B6, and prescribed potassium, hydrochlrothiazide.
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Hey Ladies. Denny I see the onc wed. Received a call from doctor today that said positive for c-diff. So between all the new meds I have just received I also get a 10 day dose of vancomycin. Gotta love it. Worked 25 years in a hospital and prevented myself from catching c-diff from one of my many patients that had it. Go out on disability and get c-diff. Ironic. Hope yall are doing well and having a great weekend
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Oh, Mel...that's all you need! At least you're in a lovely place....Fernandina Beach is wonderful. Good luck with getting rid of this bug!
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Wow Mel! so sorry! Prayers for a quick recovery!!!!
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SO sorry to hear about the C-Diff! Best wishes, lit candles, good mojo, prayer flags flying for you!
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How's everyone doing? Is everyone staying safe inside?? In am in W PA, and my whole state is in a Stay at Home order.
I only go out every 3 weeks for my chemo. My daughter is a home health psychology nurse and is very upset that they don't have the necessary PPE's available.
My county has 77 positive cases so far, but I guess that it will get much worse in 2 weeks.
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Melmcbee, nothing will help that grade of hand foot syndrome except a dose limitation. I cried when my doctor lowered my dose but was having the same SE as you. Couldn't go anywhere without adult diapers, completely debilitating. HOrrible pain in my hands and feet. My oncologist explained that a lot of the reason SE differ so much from person to person has to do with how quickly we metabolise the drug. So there is not necessarily less effect from a lower dose. Can't believe your MO is letting you continue with so many problems at that dose!
I discovered gabapentin for my neuropathy and it has been a lifesaver, 300mgx 3. I can type again!
best of luck, xeloda worked for me longer than many others./AMY
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Denny, all good here. We're on the Northern Neck of VA, which is pretty secluded and is a peninsula projecting toward the Chesapeake Bay formed by the Rappahannock and Potomac rivers. Our county has one case so car, and the adjoining county 3, all supposedly as a result of "travel". That will, of course, change/accelerate, but they are so far saying that these four individuals have been quarantined, etc.
Our son called from VT yesterday to say that I was "busted" and had been sighted in a store. He said that his generation (he's 39) is "doing all that we can to follow the rules and flatten the curve", but that across the board, according to his friends, all the parents are being "pains in the ass!".
We heard a very sobering story yesterday from a stock broker in Richmond. He said that until this week, the virus was for the most part statistics to him and the normal nuisance factors. However, his very fit friend in Richmond, age 56 and a vascular surgeon, contracted the virus and was hospitalized last week. He quickly went downhill, as his immune system, in responding to the virus, went into overdrive and attacked his vital organs. He was deemed at high risk of multiple organ failure. The hospital, as I understand it and in desperation, decided to do a "hail Mary" and transfused him, I think several times, in an effort to get the blood which was creating the fierce antibodies replaced. It worked, and he is recovering. My nurse practitioner friend said that this was a "storm immune reaction", and it particularly happens in younger, very fit people with strong immune systems that can go into total overdrive when attacks occur. I'm feeling much more concerned and will start wearing a mask now when I do go out, which is extremely infrequent.
Good luck to all....stay well!!
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Very happy to hear everyone seems to be doing well.
Liz and I in Toronto are staying safe and staying indoors. I've been working from home for the last couple of weeks but our company (manufacturing) is still open.
We've had to venture out to the hospital every day this week for radiation treatments. Liz wears a mask to all her treatments. I'm not allowed in the hospital as their protocol is only patients are allowed in.
Stay safe everyone! Prayers and hugs to all!
Grant.
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Joy, sorry to hear the surgeon’s story and I hope he makes full recovery.
On a side note, I got married in Virginia years ago and have vacationed there several times and find it such a beautiful state.
Denny, Ohio too is on stay at home orders. I’ve only gone out for bloodwork twice in a month. Fortunately its in and out in 10 minutes. Dh is a maintenance tech here in town at a senior citizen building and they have excellent rules in place: he’s not to go in to residents’ apartments unless absolute emergency, everyone there must practice social distancing, common areas like community room and library closed. He cleans and disinfects all public areas every day.
He grocery shops Saturday at Walmart, getting there when they open the doors in the morning. He wears gloves. We have masks, not sure if he’ll start wearing one when he goes out. I certainly will. Dh and I go on country drives for something to do on the weekends. My son and his girlfriend, also in PA, work remotely from home and only go out every two weeks for groceries.
The local cancer center closed because four employees tested positive for the virus. It’s not the cancer center where I go, but I feel awful for the patients. Our county has 13 positives but the health dept said do not let that give anyone a false sense of security as only the more severe cases are tested. There may be many more positives who are just self quarantining at home. They said assume everyone you come in contact with has the virus and take all necessary precautions.
Denny, it is horrible to hear your daughter, being in the medical field, does not have enough PPE. I hope that she is able to remain safe.
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Hey Ladies. Hope everyone is enjoying our staycation. Lol. Or prison. What ever you call it.
Aroissin, i am on a break from chemo until my infections heal and hand / foot/ and mouth heal. Im felling better. Hands and feet are much improved. Im hoping she will put me back on chemo.
Hope all are having a fabulous healthy day. Hugs.
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Mel, I'm so glad that you are taking a break to heal! We always need quality of life, but especially during this crazy time#
Hubby and I are just hanging around the house with the dogs and cats, but there is nothing unusual about that other than having to play grocery scavenger hunt! Thank gawd we've been able to have almost everything delivered or picked up at curbside!
Take care and I'm glad you're feeling better,
Katty
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Hi nicolered,
My mom was on xeloda and her bilirubin levels used to be normal in the on weeks but used to increase in the off week.
We used to track bilirubin every 3 days but realized it goes off track only on week off days.
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Thanks Bct....mine is higher on the ON WEEK...on the off week I seem to recover.
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Joining you guys very soon. I will try to catch up reading last few pages.
In just 3 months, my liver MRI showed widespread "spots" in both lobes. There are so many, but questionable if any can be biopsied..hmmm.
S
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Sandi...were you last on Ibrance??? If so...this is what I hear from so many that fail on it they get widespread liver mets after...one friend said her oncologist wont even prescribe it anymore because he had 3 patients that happened to. Its great when it works..but hearing now that when it fails you can have what they described as an explosion of mets
I am glad you will be here with us though
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Hi Nicole. I am grateful that Ibrance and Letrozole kept me NEAD for 39 months!
I guess when it stopped working (suspect ESR1 mutation) that those micromets in hiding had a freaking field day. Ugh.
Looking forward to collective wisdom here.
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Sandi,
I too started out with AC late in 2015 until February 2016 and went on ibrance letrozole for 24 Cycles. That combo was so tolerable!
A scan in April 2018 showed metastasis to my liver. I also have the ESR1 mutation.
I've only been on xeloda since Nov & my first scan showed great results. My next scan has been bumped and I won't have it till June, but I'm feeling well , the SEs are tolerable for me & my blood work is good so far!.
I wish you all the best!
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Thank you Kattysmith..you have no idea how much your words mean to me, especially right now. I am grateful for the long run of Ibrance/Letrozole, but who doesn't want their treatment to last and last and last...
S
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Sandi, welcome to the Xeloda site. I was with you on the Ibrance site (with Faslodex and Xgeva) for 23 mo and had a good experience. Few, if any, SE. I had some progression in January of last year ('19) and have been on Xeloda and Xgeva since (16 mo). Hand and foot syndrome are pain, but you have to deal with it. Otherwise, my life continues to be relatively normal. My PET scan (every 3 months) is tomorrow morning at 9. We'll see.....:)
We're here to help. When I started Xeloda, I read through much of the string and cut and pasted suggestions I personally thought might help me. I'll copy it below. You may or may not find it useful, but you're welcome to it! Good luck, Sandi-
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JoynerL. Thank you! That list is extremely helpful. I start at 3300 mg total per day.
S
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Sandi...why do you think its from the ESR1?
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Hi Nicole, without the bx with F1, cannot be 100% certain. It was just a guess from my MO since I have been on letrozole 3 1/2 years. I did have a lot if blood drawn and she waa checking for PK3, too.
I asked about 7/7, but she wsnts 14/7 to hit it hard up front and maybe as scans improve, switch to 7/7.
I found it interesting that once I am stable, my MO will switch me to Fas/Ver with the idea I can always go back to X.
Reading like crazy.
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Hi Sandi,
I'm on 3,000 per day and started out on the 14/7 schedule. My MO switched me to 7/7 about two months ago because he didn't like the way my feet were looking, although I didn't think they were that bad. I do like the new schedule and I hope that it will be as effective as the first one.
Joyner, keeping my fingers and toes crossed (ouch!!!) for great results on your pet scan today!
Katty
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Sandi my MO is open to going back to endocrine therapy as well and there is research backing this up that it can work...especially after chemos. I wouldn't go back to Ibrance (I don't want Ibrance) but she mentioned some others.
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