All about Xeloda
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Roses. This go round my hands are my bigger issue. Yikes!!!! I take my last dosage Fri AM. I think tomorrow Am and Fri Am I'll only take 3 pills as my MO recommended.
Thank god I haven't Rasheed--- yet. One never knows with Madame X!
Babs
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I just bumped into a study about an effective remedy (not a palliative like vaseline, emollient etc.) for HFS, and which seems to even reverse symptoms:
Lademann J, Martschick A, Kluschke F, et al. Efficient prevention strategy against the development of a palmar-plantar erythrodysesthesia during chemotherapy. Skin Pharmacol Physiol. 2014;27(2):66-70. doi:10.1159/000351801..
I want to pursue this for my wife, because it is apparently effective for both Xeloda and Doxil. Has anybody tried or heard of it?
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Very interesting study. How can we get our hands on this lotion?
BTW, I've had great success with a lotion called Flexitrol Heel Balm (http://www.flexitol.com/us/products/foot-care/heel-balm). It is not a prescription lotion. I just buy it at Walgreens. You can also get it through Amazon. Urea and a variety of emollients. Over a year of trying at least a dozen creams, this has been the most effective for me by a long shot.
Hugs, Susan
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My blood draw last week was botched, so back to Dana Farber I went today to give more blood so I could have the blood marker tests done. Just got a call from Dr. Christina, and this stuff is still working! In the past six weeks down another 19%, for a total of down 43% over the past four months. Makes how crappy I feel today worth it. In fact, she called right after I got yet another cut in my finger from peeling a hard boiled egg.
Cheers to MadameX!
*susan*
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Susan. Great news. Do your happy dance but be seated while you do it. X is tough on my hands and feet but worth it for such good results!!! I agree with you on that!!!!
Babs
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Yay Susan!!
And SusanF, thank for the tip on the lotion. I try everything, so this sounds like another good bet.
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That is really great news Susan!!!
I just swallowed the last 4 of the my very 1st wk on X and I have to say it has been rather rough! I think the majority of roughness has been because of my fibromyalgia, however I think it is the X that has caused me to ache and hurt terribly worse. My pain meds have not been very much help at all which is unusual. Anyway, I have been basically in bed since Sat evening. Low grade temp most of the week-highest so far was 100.2 last night. Headache everyday, dizzy, and loss of balance. At times I feel like my eyes are kinda jumpin around in my head. Anybody had that feeling? I feel real "dingy" and "chemo-brained". I've been too afraid to even drive because I don't trust my judgement or reaction time. Then yesterday, a red itchy rash showed up on top of my hands and one side of my neck. The center of my chest is bright red on up to my neck, but it does not itch. I feel like such a mess! What a wasted week
Haven't had energy to go back a read where I left off. Hope everyone is having great scans & low TM's!
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YAY, SUSAN!!! That is fantastic news!
ps. My grandmother taught me an egg shelling trick: Douse the boiled eggs in cold water till they cool off a bit, then drain all the water out of the saucepan. Shake the pan vigorously over the sink. Shake shake shake. The colliding eggs will all but shell themselves. Then just pinch the shell off the eggs under a trickling faucet.
It's kind of fun, actually.
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NicciJ, I'm sorry you've had such a hard first go. But hang in there! My first cycle was so awful I was not sure I could stay on Xeloda. But in the 60-70 cycles I've taken since then, I've never had another cycle anything like that first one. I bet your second cycle will be much easier.
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Thx lulubee. I'm sure you're right. Who knows if the Ibrance is even out of my system yet, ha! Looking forward to next week. It surely has to be better!
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Susan, so happy for you with your good news! Hooray!
Nicci, if you haven't yet, please call your onc about the fever. It's probably not serious, but it could be a sign that your white blood cells are getting dangerously low--best not to mess around with that!
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Susan in SF,
I'm trying to get more details on the preparation of the cream to cure PPE (HFS). I remember you were one of the few who tried uridine cream with me, and perhaps we can put something together. A study mentioned in the bibliography* of the previous article has more details:
- The test formulation contained 1% submarine cave water, microparticles with a size of 10–100 µm, consisting of a mixture of Hippospongia communis and silica. The porous microparticles were loaded with antioxidants, such as green tea, complex-V-containing green coffee, Pongamia pinnata seed extract, and Angelica extract, at a total concentration of 3%.
Apparently the cream base or samples were donated by a cosmetic company Lancaster, Monaco, and Medac, Germany. But I'm not sure how to get samples or equivalent substances. Maybe you have further ideas?
Note*:
Lademann J, Richter H, Golz K, Zastrow L, Sterry W, Patzelt A. Influence of microparticles on the homogeneity of distribution of topically applied substances. Skin Pharmacol Physiol. 2008;21(5):274-282. doi:10.1159/000148043.0 -
Hi Giovanni. You might be able to get the cream by calling a compounding pharmacy and giving them that part that you just posted. I'm going to try doing that next week. This week was really hard on my hands!!!
Babs
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Babs,
Let me know what you find out. My experience with compounding pharmacies has not been positive.
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While reading recent articles that explain the most recent theory for HFS, it realized that to my wife it occurred mainly in her soles, rather than her hands, because her feet have thicker soles and are sweatier than her palms. The theory is that HFS is caused by a combination of sweat glands and thickness of the stratum corneum, the thick hard part of the skin. Did anybody observe the same? I'd like to get some feedback to confirm this.
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I am cold all the time. No sweating here at all. I have barely taken off socks for 6 months. My feet were worse first, but now my hands are being affected as well.
*susan*
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Susan my feet were also bad but now my hands are worse
Bab
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My toes and fingers were affected more than the soles or palms. A lot of peeling and cracking around the toes (especially the big toe) bothered me the most.
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me too sandielee. My big toes are the worst. Sides of gross next. But this month my hands have been awful.
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hi Nicci - sorry to hear that your first cycle has been bad. I too have Fybromyalgia and I tend to get the odd dizzy spell especially when I have not eaten for a while. I sometimes get a bad headache too when I take my evening dose.
I can identify with people saying that their hands are worse than their feet. My feet seem to be better now but my hands are stinging more now I'm on my fourth cycle. I wear white cotton gloves in bed once I've covered my hands in cream - I was joking that I was like Michael Jackson but my son pointed out that he only wore one white glove!
One thing I have also tried is taking the probiotic drinks. While I still have to rush to the loo, my stomach is generally more settled and the smells coming from me are less bad! It's awful what we have to go through!
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My hands are worse than my feet, but mostly cuz I sit most of the time. But it's the tops of my hands, not my palms. They are so red, they look like they have been chemically burned! Cracked, splitting skin, I most have to keep them like claws. Opening them completely hurts, as does making a fist.
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My hands are worse than my feet, too, and it's been that way all along. My feet get lumpy calluses, every now and again they hurt at the end of the cycle, and I got a blister once, but that's about it. And this is with being obsessive about getting in my 10,000 steps a day every single day. I need to be careful with shoes and socks, but that's not too bad.
My hands, on the other hand (ha!), were red and hurt to touch until I started using urea cream. Now, even with the urea cream, they split at every joint and on my dominant hand the fingertips are all peeling, occasionally to the point of peeling down to where it hurts.
I feel very lucky, because it's still very livable for me and I'm willing to pay that as a price for taking a currently successful drug, but it definitely has it's moments.
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The creases on my fingers hurt. From the first crease to the tips are swollen. I no longer can sign into my phone with a finger print. The tips of my fingers are cracked and are peeling. I sleep with cream and white cotton gloves at night. At work I keep moisturizing and I wear black cotton gloves. Thus far the best topical has been Triple Paste AF. The first time I used it it restored the natural color of my hands and took away the severe pain. I would recommend it to all. I also use it on my feet and it's helped as well
Boy do we deal with a lot!
Babs
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Even when you do not feel sweaty, your skin is always transpiring. A common science experiment has students encase a forearm or a foot in a clear plastic bag, tightly sealed with masking tape, at the beginning of a class. After almost an hour of normal class activity (mostly sedentary, in an air-conditioned room), there is always a surprising amount of moisture in the bags. The other arm or foot, by comparison, feels dry and not sweaty at all.
The study posted here earlier this week emphasized neutralizing the free radicals (med toxins) that transpire through the skin in perspiration, before they are reabsorbed into the skin layers and trapped there. Antioxidants are key here.
Here's my thought. I note that the ingredients in the cream formulation used in the study include essential oils which have high antioxidant activity. Vicks, which has proven surprisingly effective for many here, is basically a petroleum-base carrier of essential oils which have powerful antioxidant properties. My thought is that both the cream in the study and Vicks work through the property they share: essential oils which neutralize the free radicals/toxins in perspiration. Just a theory, of course.
It's interesting to me, after reading that study, to note that the pump bottle lotion on my bedside table (the one I default to when I realize I have gotten in bed once again without remembering to balm my feet and am too tired to get up and fetch my fancier foot balms in the bathroom), contains essential oils of frankincense and myrrh (high antioxidant), and chamomile (high anti-inflammatory) in a rich base of emollient plant oils like shea and cocoa butters and argan oil. So there ya go. Maybe it's been even better for me than my arsenal of balms?
It also contains no silicones, which are included in many emollient formulations because they seal water into the skin. So now I'm wondering if silicones (dimethicone, etc) are counterproductive in treating HFS. Might they trap and seal the sweat toxins into the skin? I do not know. But it seems quite possible to me.
However, comma. There are obviously other biological factors in play which make one person more prone to HFS than another. For instance, one study confirmed that patients who have the a1298c variant of the MTHFR gene polymorphism are far more likely to get HFS during chemo than others. Patients with the MTHFR gene variant which I have -- c677T-- proved far less likely to get HFS than those with the a1298c variant. (And this is just ONE gene variant out of thousands we all have.)
The MTHFR angle could come into play on the metabolic level in any number of ways. I am not qualified to unpack that. But it is apparent that something in the methylation pathway impacts the way some people's skin divests itself of free radicals, etc.
What would be interesting is to take a population of patients with a1298c MTHFR and use the cream formulation from the study on THEM. Yeah, baby. Play your act for the toughest crowd, right? If it proved preventative in that population, we would all sit up and pay attention for sure.
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Doc wants to take me off Xeloda for now and try Tamoxifen. I've never been on it. He thinks because I'm fairly stable now, it would be a good time to try. So, I think I'll make the switch this week and give my hands and feet a needed break. If I can stay on Tamox May, June and July at least, I'll be feeling pretty good for our trip to Quebec this summer. It would be great to be able to walk around the city, pain free.
My onc is a fan of hormonal and targeted treatments. Will do chemo if necessary, but thinks often hormonal give a longer progression free response. Worked for me with Faslodex, but not so much with Femara/Ibrance.
We'll see.
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Lulubee,
That's an extremely interesting hypothesis, about the anti-oxidant connection between VapoRub and the remedy. I'm also going to try with a bunch of antioxidant found usually in a household, e.g. tea, ginger, cinnamon, rosemary and others less usual ones, e.g. turmeric.
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Lulubee- So you know which version of the MTHFR gene deals with folic acid? I had totally forgotten about this gene until you mentioned it. When I was pregnant with child 3#, it was discovered that I had a mutation of this gene. It was keeping me from processing folic acid correctly. This led to my baby being small and we had to watch her careful thought the pregnancy. Funny how this same gene is associated with Hand foot disease. Now you have me wondering. Very interesting. Thanks for the information.
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Lovetosing, do you take anything for the fibromyalgia? I used to take Savella, which was wonderful. I had mostly good days and I was able to work. Once I started chemo (AC), it slowly got worse and worse to the point it totally quit working and I had to quit working as well.
Questions...which cycle did everyone start having the problem with their hands and feet?
Also, how many cycles or at what point did you know the Xeloda was working? I am so nervous now since the Ibrance didn't work. In just those 3 months, my tumors in my lungs/lymph nodes in my chest all doubled and I collected some new ones--one that is already 1.3 x 1.6 cm!
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Sandi, good luck on the Tammy train, let us know how it goes.
Nicci, for me the SE's were rather accumulative. It started out mild, early on in game, and over a year later it's way worse. Plus I've upped my dose, Which really reeked havoc on my hands. Horrible D yesterday and I've been off for a couple of days!
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NicciJ, I've been taking Xeloda for over two years. I experienced bad hand/foot syndrome 10 days into my very first cycle.
Goldie is correct in that Xeloda side effects are cumulative. I switched to a 7/7 schedule only a few months ago because my hands and feet were so painful on the 14/7 schedule. Even so my skin is in bad shape.
Does anyone else notice the side effects are somewhat delayed? My skin is at its worst during my Off week and my skin is at its "best" when I resume taking Xeloda.
Surprisingly my Hand/Foot Syndrome is almost as bad on a 7/7 schedule (my daily dose was not increased). I can't believe I took Xeloda on a 14/7 schedule for as long as I did! At that schedule there were days I couldn't walk normally due to foot pain and had trouble holding a toothbrush or writing with a pen!
Kessala
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