All about Xeloda
Comments
-
Denny, I’m sorry as well. I hope they can help the fracture quickly so you’re out of pain.
0 -
Denny- ditto to the other posts. Hope they get your pain quieted quickly.
0 -
KBH recommended a lotion called Udderly with 20% Urea. It stopped the peeling. I put it on my hands and feet at night. I wear a little slip on shoe after I put the lotion on so it can work all night without messing up the sheets. My peeling fingers stopped. I wear socks and shoes in the house because it makes the tingling feeling in the soles of my feet go away. Here is the link for Udderly with 20% - I order it on Amazon with Subscribe and Save: https://www.amazon.com/dp/B08R6JXCGR/ref=sns_myd_detail_page
0 -
Wow! I am always encouraged when I hear that women with MBC can live 13 years and 20 years! I am in my third year and the normal medicines did not work for me. 10 months of Ibrance, 10 months of Verzenio, 3 months of Affinator - I didn't know that my stomach lining was bleeding and I could have died because my hemoglobin was so low. I had to have 2 transfusions, my curly hair became straight and I have brown spots on my arms now. After Affinator I started Xyloda December 2021. It wasn't until April that my tumor markers started to drop from a high of 198 to their current level of 65. Side effects are not bad for me, although I found out I can't feel the top of my right foot! I take 500 mg x 8 for two weeks daily and then 1 week off. I hope Xyloda continues to work for me. My original breast tumor has shrunk! I have 6 mets, am de novo, and so far (knock on wood) no tumors in my organs. I am working on losing weight, increasing my muscle mass and stamina. I am doing a quick walk/run in our wooded park trail twice a day. 1/2 mile in 6.5 minutes!
0 -
woodlands, it is great to hear that you are having a good response to Xeloda. You sound like you have the right frame of mind to monitor your diet and exercise. Be open minded, you too may be one who will one day be writing that you have survived ten, fifteen, twenty years with mbc!
0 -
Well, I am off Xeloda as of today. My bones are progressing, but, slowly and TMs rising rapidly now.
Will start Enhertu as soon as all the ducks get put in order. will try the cold caps for first time and hope that they slow down hair loss (greater hair loss if you are "heavily pre-treated".) this will be my 4th line.
Good continued luck with Madame X - it worked for 2 1/2 years for me
0 -
nkb, I am so sorry to hear of your progression. Ten years, wow. I am praying you have a nice long run on Enhertu.
0 -
Thanks intothelight! not looking forward to IVs again, but, it has good stats for Her 2 low which I am.
0 -
Oh, nkb, I'm so very sorry to hear of the progression and the infusion chemo change. Since I have been off of Xeloda since january, I only occasionally look at this string. I'm sorry that I had to read this this morning. On the other hand, you're a pro at this, and you'll know how best to handle it. Let us know about the cold cap! I didn't realize that you lost hair more quickly if you were on your fourth line. I learn something every time I'm on here. Good luck, my friend!
0 -
Hi Lynn,
thanks! the primary researcher said that is what they noticed about the hair loss on enhertu- it may be true on other drugs as well.
Hope you are well and still responding to Afinitor!
0 -
nkb, sorry you’re moving on from Xeloda tho glad that you got 2 1/2 years from the treatment. Please let us know how you do with the next one you’re on. I wish you all the very best.
Denny123, we haven’t heard from you since the middle of the month when you posted about your latest CT scan and I have been thinking of you.
0 -
divine...thanks for thinking of me. I have spent way too much time in my recliner since my back feels better then. I am finally able to sit at my computer for longer....so I am back.
My back is slowly getting better with the help of a back support wrap and ice packs.
Meanwhile, I am having HFS again on Xeloda. All that I can think of is that I tried eating Dave's Killer Bread which is organic and supposedly doesn't have folic acid. But it does have whole grains. Before I started on that, I was bad and ate one ear of corn a day for 10 days. So I have a toe that is completely raw on the bottom, and other cracked open areas also. And I have this horrible painful large blood blister on my index finger. It throbs constantly. No idea why it started. Yesterday I called my chemo center and told them that I was taking a chemo break for a few weeks since I need this stuff to heal up.
4.5+ years on Xeloda is kicking my butt.
NKB-I am so sorry that Xeloda stopped working for you. My onc is very excited about Enhertu and its success rate.
Woodlands-kudos to you! No way could I walk a half mile like you do. I have become such a slug lately.
0 -
Denny123,
So sorry the HFS is back- I wonder if a dosage decrease would help? Helped me- although a chemo break if it doesn't lead to progression sounds very lovely.
I don't know how you hurt your back, but, I feel like I turn over in bed or hubby hugs me and I get injured!! I don't know if it is side effects from the radiation I had making my muscles fragile, cancer or chemo treatments. Motrin helps me and being careful- I can still walk several miles, but, never got so many injuries without a real cause. they seem to take a long time to heal also.
0 -
nkb...I was on 2,000 a day until I ate too much folic stuff and my feet got so terrible that my onc took me off Xeloda for 7 weeks. But during that time, I presented with a spot in my liver.
So I begged to go up to 2,500. Now I have a spot in my lung. So I don't want to have a reduction.
I hurt my back when I lifted a bucket with about 1.5 gallons of water....which is ridiculous. I have osteopenia in my spine, but at L1, it is a very low score of penia. I hate winter, but at least I won't have so much yard work to do. That will help my poor body.
0 -
Denny123, so sorry you hurt your back. I have not had it as bad on Xeloda as some. The main problem I’ve had lately is the index finger on my right hand at the knuckle. It keeps splitting open. I had a two-week break, as it had healed after I put a coffee stirrer on that finger to make it stay straight so I couldn’t bend that finger. It’s back, so coffee stirrer back on that finger.
I’ve been so fatigued, but I finally just took my butt and have been walking 1.5 miles every day. I still have a nap most days, but it’s helping with my energy level. I’m hoping to increase how far I can walk, but I’m getting sore feet now. I will try to take tomorrow off from walking.
Every time I have to take my pills, I say I love you, but I hate you. Ugh.
0 -
kbl...that is my problem too-on the cracks on the inside of the fingers on my right dominant hand. I guess that after over 4.5 years of Aquaphor, it was working against me. So during the day I use Udderly or Gold Bond diabetics cream. I still use Aquaphor and food service gloves at night.
I can't straighten out my fingers since that is when they split.
But it looks like you have been on Xeloda for a year. My 4.5+ years is getting really hard.
0 -
So yours hurt when you straighten them? Mine hurts when I bend it. I can’t imagine what these drugs do after being on them for so long. Yes, it will be a year at the end of this month. Ibrance for two years before that.
0 -
kbl - My fingers split on the inside of my hand when I straighten them out. Bacitracin and band-aids.
0 -
Maybe I’ll try that. I’ll look for it. Thank you.
0 -
Question- did you find that with each cycle, side effects lessened?
I am finishing up Cycle 4. I feel like my side effects are almost gone most of this cycle. Still expect a few bathroom trips after breakfast but then GI stuff quiets right down, mostly. Lots of loud rumbles in colon but not constant diarrhea
Find I am more able to putter around the house so much more than the last 2 years.
I am due for scans pretty soon which should clue me in to how well or not well Xeloda is working.
TIA for any repl
0 -
Dodgersgirl,
I did find that the side effects got better (also had a dose reduction and went to 7/7 due to my fragile bone marrow)
it got to the point where only day 1 of the new cycle did I feel more fatigue. almost more side effects on my off week with leg cramps etc.
0 -
Nbk- thanks for sharing your experiences.
Diarrhea and fatigue were so strong in Cycles 1-3 that I wasn’t expecting this cycle to be easier. Hope the chemo is working and this trend con
0 -
DodgersGirl, I’m glad the side effects are slowing down. That’s always so great when we feel decent. The side effect that I had that went away after a few months was the fact that I couldn’t handle anything too overwhelming and really couldn’t do two things at once without having a tear fest. That has calmed way down, thankfully. I’ll have a quick outburst here and there, but no more tears.
I have other side effects, but they’re not horrible.
0 -
I just found this cream and it works pretty well. It isn't greasy like Aquaphor is. I use it on my hands, and still use Aquaphor on my feet. It is only $7 at Walmart.
0 -
KBL— woke up this morning a bit nauseous. Treating that SE as a reminder that each day is unique.
Today is final day of Cycle 4. Will meet with MO next week to see if it’s ok to start Cycle 5.
What an oxymoron to have to be cleared to take poison. Welcome to life of cance
0 -
dodgersgirl - Certain side effects lessened or went away. Terrible taste in mouth and dry mouth were short lived. No more peeling feet.I never had any nausea or diarrhea. I didn't even feel bad on my week off like some do. My tumor markers were at an all time low and my June scan was great. I was feeling the best I have in years. I was exercising and regaining lost muscle tone. My MO asked if I wanted to lower my dose. I told her I feel great so I'm not going to lower my dose until my October scan comes back good. Then fatigue hit in cycle 9. I was only a few days into the cycle so I chalked it up to overdoing things when my son was staying with us. Then it got worse and worse. I lowered my dose to 2500 mg. That didn't help. Then I lowered to 2000 mg. Still no relief. I'm on my off week now and will start cycle 12 on Saturday. I am trashed with fatigue. I see my MO on Thursday. My last blood labs were good so I'm not expecting any surprises on Thursday's labs. I was thinking that I might ask her to test vitamin D level and B12. I don't know what else to do. What could be causing this fatigue?
0 -
Rk2020, I’m also in my 12th month. I’m on 3,000 mg per day, seven on, seven off. I know what you mean by fatigue. I have to nap daily. My hands and feet are not too bad, more so on my feet than hands at the moment. I think it just keeps building up in our system. I had my D and B12 checked at my last visit those were fine. Eve my anemia is better, but I’m still anemic. Have been since before I was diagnosed. It’s not iron deficiency either. Probably because it’s in all my bone marrow.
DodgersGirl, ain’t that the truth about being cleared to put poison in. Ugh!
0 -
KBL -yep. I’m anemic but not worse then I’ve been since this circus started in 2020. My HFS is limited to mild-moderate burning of my feet and I’m losing some nails. Beyond thin nails that snag everything and dry cuticles, my hands are fine. If I can just get this fatigue under control, I’d be golden. I think I’m going to force myself to go to Aquasize this morning even though I’m having issues with water in my ears. I have no ear pain today so I’m hoping my ears are healing.
It’s amazing that I’m baffled why I feel so bad, when like Dodgersgirl said, I’ve got to be cleared to take more poison. SMH.
0 -
I, too, suffer from fatigue. Seems like 30 mins after taking morning pills, I have to take a short nap.
I have been so anemic while on Ibrance and Verzenio that being SOB and really unable to do much more than watch tv and use restroom that I am really noticing how much stronger I feel on Xeloda as my hemoglobin climbs (still too low to be normal but much higher than 8.1)
Scans are today. First scans since starting Xeloda. Hoping to find this chemo is working. Won’t know for a week (that sucks)
0 -
I slept horribly last night. Took about a 1.5-hour nap today. Now thinking it's a vicious cycle of horrible sleep, nap because of horrible sleep and fatigue, take Zquill or have horrible sleep. What is it with the nighttime? I do find that right after lunch, the fatigue hits me the worst.
I have started forcing myself to walk. I am doing about two to three miles, but I took off today because my feet were bright red. They didn't hurt, but I didn't like the color. Hopefully, I'll be back at it tomorrow. It does help a little bit, but then I shower, eat lunch, and nap.
DodgersGirl, sorry you have to wait so long for results. I’ll be thinking of you.0
