I am frustrated and feeling more vulnerable and overwhelmed than I've felt during most of my 19 year journey with MBC. On day 5 of 7 days off Xeloda, second round of two weeks on, one week off. I phoned the cancer center either two or three times yesterday and twice so far today.
On top of that, I am having what seem to me to be severe digestive issues! Part of my intestines was removed in Oct. as cancer cellls in my abdomen were blocking it. I can't eat a "normal" amt of food anymore, am losing about ten pounds a month. And my bowel movements are unpredictable. At first I had alot of constipation and more recently it's been the opposite! I wear Depends (a brand of "adult diapers") all the time now. It's all so yucky! My body no longer sends me reliable info about what's happening with my bowels, and that can lead to real messes. I didn't like or trust the gastroenterologist I saw in the hospital and need to find another specialist. They are all a hour's drive away and I don't know if I can tolerate that much time in the car! Frustrating!!!
What lotion or creams have any of you found helpful with the red tender hands from chemo?
Mostly I'm venting here but if any of you have recommendations about that, I'd appreciate it. And I appreciate knowing that you'll "get it."
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PJBinMI
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I can commiserate with you; I'm fighting high bp from the ibrance or maybe it's the letrozole?anyway, last night at midnight, it was 217/97 ... scary high and had been high all day ... so I popped another bp pill and now waiting to hear from the doctor. I feel i'm in between a rock and a hardplace, as I'm a caregiver for my hubby so if I stroke out, no help for me, oh he would try .... I'm venting too and sorry to do it on your post; seemed most convenient anyway! More than ever, my prayer is for God to bless and heal us all in Jesus name, amen!
high blood pressure is scary, too! These aging bodies can be quite the challenge! I hope you hear back from your doctor soon. It's okay to call more than once a day for something this important! Sending hugs....
Hi. The hand/foot thing is a bore for sure. I tried lots of creams and what works best, for now, us pure shea butter. I buy it in a tub at Target and slather my feet and hand in it. Anything left over on my hand, I rub onto my face because hey, why not. It has really helped with the cracking in my feet and dry, cracked hand. I think the brand is "SheaMoisture 100% raw". It is not expensive either.
I worry that bag balm and some of the others have petroleum in them, and can't imagine I want that soaking into my skin on a regular basis.
Per GI issues--I take 400 mg of magnesium and a probiotic ever night at bed time. In the morning I drink a glass of organic, grass-fed, unflavored/no sugar Kefir several days a week. This does help.
I’ve tried all kinds of creams, and I like Gold Bond foot cream and also their hand cream. Currently my red feet are peeling so I’m using Udderly Smooth cream with 10% urea. My hands and feet are ugly but they’re not cracked or bleeding and they don’t hurt, so it’s good. At first I was on a Xeloda (capecitabine) schedule of two weeks on/one week off, but my feet were purple and hurt so my oncologist changed the schedule to week on/week off (same dosage) and my feet have settled down a bit. My hands are only red and a bit puffy; no peeling.
I hate writing this, BBJ, but sounds like incontinence - not knowing when you have to poop, loss of control; happens with urine too. An MR I of the entire spine would be indicated. Hope that is not at all it and miserable as ot is - better that I t be entirely a colon issue from surgery. In which case if a GI doc doesn't help - palliative care doc might/nurses with experience often can know what to do - l wish you the best, sometimes it feels like we just have to get lucky, l so wish l could help you more.
First let me congratulate you; 19 years MBC is not only commendable, it give me hope.
I am MBC 18 months, six months on Xeloda. My dose was recently reduced a second time due to severe Hand Foot Syndrome. I went from 3000mg, now to 1500. I have tried so many creams, lotions, oils and plants. I can minimize the cracking and peeling but the only way to reduce the pain is through over the counter pain medication. Some have been prescribed Gabapentin. To date my best strategy has been to lotion up at bedtime and wear socks and gloves. This seems to lock in the moisture. I wear very soft soled shoes and on days I know I will walk more than normal I cut Lindy brand aloe strips and put them inside my socks. For me it is an absolute daily battle but the Xeloda is working so I battle on.
My off week usually leads to digestive issues. Not as severe as yours but I take Loperamide and Omeprazole and that seems to calm my stomach and bowels.
Hi PJB, so sorry you are experiencing this. The hand/foot side effects are common for Xeloda and doctors usually reduce the dose to find a level that causes less side effects (and can still be just as effective for the cancer). They may also change your schedule to 1 week on / 1 week off instead of 2 weeks on / 1 week off. I started off at Xeloda 3000 mg/day and have had to reduce several times, now trying 1 week on/off at 2000 mg/day to see how that works. I find pure coconut oil works well on flaking/cracking skin as well as the moisturizer called Very Emollient Body Lotion by Alba Botanica. My oncologist also recommended moisturizers with 10% urea for skin peeling. Best of luck and hope dose reduction will help!
PJBinMI, we could almost be twins with regard to our symptoms and side effects. By way of background, in addition to having lobular mets to the GI area, I have gastroparesis (slow stomach emptying), some pyloric gastric outlet constriction caused by an ulcer, and a partial obstruction of my large bowel caused by the lobular MBC. These cause abdominal discomfort, distention, gas, burping, loss of appetite, and weight loss. I'm on 2,000 mg of Xeloda, one week on and one week off. I just finished my first week on and the GI issues were horrendous. Depends is now my closest friend!
When diarrhea hits I'm afraid to take anti-diarrhea meds in case they block up my partial bowel obstruction. So I just go (literally!) with it! But I've lost tons of weight I cannot afford to relinquish and have cachexia.
You may want to consider speaking with your doctor about lowering the dose or trying a schedule of one week on, one week off, which is reputed to be a more tolerable regimen. And please don't give up on finding a good GI doctor! Also, you should be on Palliative Care to try to maximize your well-being.
Diet can also play a part - I've learned that I'm sensitive to lactose and of course some folks are sensitive to gluten. A low-residue diet may be helpful.
With regard to the hand-foot, you've received excellent input. Below is a list of options from my Guide. Please feel free to PM me any time, and I hope you begin to feel better soon!
hi Best bird, I am also lobular with recent news of spread to peritoneal cavity… have always had a slow transit time despite a diet mostly fruits snd veg… my nz Dr warned me that I may have to switch to a low residue diet that prob will be hard for me. Xeloda appears to be working for me me as my CA27-29 dropped to 250 from 400-500… after 3 months so I am hopeful that it is working. I always appreciate your advice! Thank you!
Bettybuckets, I am so glad that Xeloda is working for you! And yes, a low residue diet can be challenging but I've been on it for over a year and it is do-able!
Congratulations for your 19 years. We all know it is not easy at times, but to say the most difficult in 19 years really says something. Something I read recently helps me- “you have made it through all of the most difficult times you have ever encountered- draw strength from this.” I probably don’t have it exactly right. But there is something to it for sure.
For the lotion, I was told anything with 40% urea. I had to order from amazon. Not sure it helps- i don’t like how it feels, kind of plasticy . My nurse also suggested Aquaphor. That seems to give me the most relief the urea might if I were more diligent about using it. All I can say about the digestive issues is keep trying to find someone willing to listen and do what is necessary to figure it out. I find a nurse or physician’s assistant tends to be better at listening and helping make additional appointments- more so than my oncologist. Prayers to you and I sincerely respect you for navigating this disease for so long. Give yourself some grace and vent on.
Wow, 19 years! I'm 3 years in now and also took xeloda with foot and hand issues. Skin was red and peeling and lost all of my finger and toe nails. The Aquaphor helped to sooth the pain but didn't stop the other symptoms. I also used 100% cotton gloves and socks to help keep the moisture in. I was also on Taxotere (sp?) and that had similar side effects so It was hard to determine what was causing the issues. The bowels also alternated from one extreme to another but that eventually leveled out. I was on Zometa for the first 2 years but my jaw bone started to die so had to stop that. Currently taking Verzenio twice daily and injections of faslodex monthly and the bowels have been crazy since taking it. I can only tell you to stay tough and live day to day based on how you are feeling. Prayers and hugs go out to you and all of my sisters fighting this disease and are members of the club nobody wants to belong to.
just popping in to say I’m thinking of you all out there. I have nothing helpful to respond with. But just want to say I care. I know that one day this will be me. Just not yet.
DearPJBinMi ----I am just writing to say I "hear" you and am sending hopes and prayers to you that one of the medical people call you back and give you advice to your satisfaction that can help you over this present hump.
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More than ever, my prayer is for God to bless and heal us all in Jesus name, amen!
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