Last week started on cape after dec 19th abdominal Ct scan for surgery the next day turned up cancer spread to liver and throughout. Lobular was so sneaky that the regular PET scan just weeks before was reported out stable.
So for Xmas, I quickly switched from Verzenio to Cape. They mailed it to me and I had a chat with the nice pharmacist about dosing. 3000 mg 7 days on 7 days off. It was a busy week of running around for me just like all of you. Foolishly I played pickle ball during this week. A few times squeezing last min fin in as I knew the effects would be cumulative. On New Year’s Eve I got dressed up and went to a restaurant but had to wear my slippers as everything was too tight and hurty. A friend lent me bigger sneakers to try to walk in. My own shoes won’t work right now and I wonder… should I buy new bigger wider shoes for this new normal?
Please learn from me and go easy when you start on Cape even when your feet look and feel fine .
I am hoping for help. I have grade 4 blisters in my week off. I went from plying pickle ball one night to being unable to walk around my house the next day. I know my fault but can you help? I wonder if moleskin will help like when I have had hiking blisters or if they are to be avoided.
How do I keep these open sores from getting infected? That would derail my hopes to stay on this last oral therapy and travel with my husband to New Zealand for 7 weeks at rh end of January.. do you soak in rosin salt or anything else?
Do I bandage or let air dry and stay in bed? Do I soak in epsom salts?
Do you change your socks a lot? I heard it is the sweat glands damaging the soles of feet. When I hiked, we used to put roll on deodorant on my feet and it worked so well to prevent blisters.
Do you sleep in white loose socks with lotion on them? If so which one?
My oncology team is off today and will be slammed tomorrow and so I am reaching out to all of you to get help. Thanks for sending some ideas my way.
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I haven't heard of pickle ball ball before! However I wear Australian lambs wool UGG Slides in pink! These slip ons are so comfortable and could help. Personally I would bathe your feet in warm salty water twice a day and creamed feet in socks overnight! Good luck 🌷
Claire I wrote to you but it didnt post up….I’m going to try the Epsom salts…the HFS is still an issue after 7 days of no drug…so doc wants me off longer and then to decrease my dose.
So sorry for this miserable side effect. I would try bag balm—readily available in any drug store, always in a green colored tin cube. Just slather your feet and cover with socks. Works VERY WELL!! God bless you!!
thanks Linda.. I am ordering some new larger socks as my ladies one are too tight. Luckily my hubby is good with Amazon… for times like these I am very thankful to not have to walk into a store snd look for socks!
For sports blisters we have used 2nd skin which is similar to a jelly patch and also new skin which is a liquid. IMO 2nd skin works far better but harder to find. Last time we had to order on Amazon.
Glad you were ready to take on some pickle ball. Now need to get those puppies health for your trip to NZ!
thanks for the encouragement! I am trying to stay active but off my feet. Just came from swimming in the pool. It’s harder when your feet hurt just walking in and feel a bit nauseous… but I am sure many others have felt worse and kept going. I finally stopped complaining as this is not that bad in the cancer continuum!
Hello! I don’t have any experience with Cape but I hope the side effects improve quickly for you. I love that you travel and play and are super active! Here’s to getting the foot situation under control and continuing your adventures!!
thanks miss ticket! This should be a great trip if I can get my blisters from Cape under control. It will be summer there and I bet swimming in the ocean will be good fro those feet.
I bought some very comfortable sneakers—I tried on several pairs and picked the squishiest ones that weren’t too geriatric and ugly (I am vain)
I found the hand and foot side effects were worse the first few cycles, they ultimately tapered from what you’re describing to mildly irritating. I get cracked feet for example but no blisters I am pretty active, ride my horse walk etc I found that exercise helps—as long as it’s not too much pressure on your feet
My onc recommended a couple of advil at bedtime when pain is really bad. It seems to calm things down.
Some women say folic acid in foods contributes to HFS. So things like avocados and spinach should be eaten in moderation. It doesn’t bother me, but might be worth googling what foods are high in folate and cutting back. The trouble is a lot of those foods are also nutritious…
I use a mix of creams. Nothing works brilliantly.
Stay super hydrated. I put Nuum tablets in water to up the electrolytes.
If all else fails, you can ask for a dose reduction.
thanks PBSoup! I rode my bike for past few day but too cold today so I did lap swimming… feet felt tingly feet after. But didn’t hurt while exercising. I just want to keep active. Today made the decision that I can’t physically do the bike ride in Nz… long planned for with my sister and BFFs. But we can still go to nz just not able to be out in the wilderness riding in case I need to be rescued and cant walk out. It is only my first week on the drug and hasn’t gotten better in the few days off so I imagine the cumulative effects are going to get rough.
I’m strapping in for the rough ride. Thanks for your support.
Sorry to hear about the effects. It’s so frustrating getting used to a change in meds. For your feet I’d suggest a 20 minute soak in Epsom salts then some antibiotic cream. Personally I’d try and let the air help but you might have to wear socks for warmth. I hope you don’t think this is daft but my teenage grandsons have been wearing crocs and raved about comfort as did a woman friend. I had mine delivered from Amazon yesterday and they suit my feet perfectly. I got a size 10 which is my usual size and walked around the garden up and down as I’m trying to straighten up after radiation. Highly recommend! . One other thing would be. I think you need to rest a wee bit more. Get wild when you get to New Zealand but get your strength back for now in preparation for the trip. Hugs Chris
So sorry you are going through this. I can’t give you any specific advice as I’ve been lucky enough not to suffer any side effects from Capecitabine. Except that I think it may be affecting my mood a bit (I seem grumpy for no reason and surprise myself, sooo unlike me).
I’m an Uggs girl at home as they are so soft and comfortable and I have a very comfortable pair of shoes I live in for going outdoors. Perhaps all that exercise and friction may have possibly brought on the H&F SE. 🤷🏼♀️ I have heard that folic acid can also bring it on. I am going with the notion of not taking folic acid supplements but eating normal amounts in food should be okay. I’ve also been told that chlorine in pools may irritate but I’ve had no problem with that either. Perhaps swapping out the pool for the sea in NZ will do the trick.
I hope you can delay cancelling your cycle trip and have the option to cancel last minute if your SE don’t improve.
Make sure you are taking the two daily doses exactly 12 hours apart. I’ve been told by my onc that if I don’t take it within an extra hour (13 hours from the previous dose) that I should skip the dose altogether. I am yet to find out why but I think it’s a SE thing. So far I’ve managed to stay on track.
Hopefully you can read this link below. I found it really useful, but honestly I don’t know why some drugs have affected me and some have had very few side effects.
I find wearing no socks and lambs wool slipper or shoe most comfortable. Also I ordered silicone socks on Amazon. I lather feet in cream and wear these, cannot walk in them as it is very slippery but keeps feet very moisturized. Talk to your oncologist, you may need a dose reduction.
I also soak in epsom salt if they get very sore and red. But very important to moisture after as the salt dries the skin even more, but I find it soothing when feet get really sore.
I definitely can walk as far as I used to, this was a hard adjustment as I enjoyed long daily walks before.
Hope you find some relief. My first month was the worst, it has gotten better, but I have had dose reductions a few times also. I started at 2000mg twice daily, two weeks on, one week off. Went to 1800mg, then 1650mg and have been on 1500 mg twice daily last few months.
I also read that eating too much folic acid foods and dark leafy vegetables can make feet worse.
Overall I have found cape a more trying treatment, then previous Ibrance/Letrozole. Definitely harder on my system. First month I struggled with severe mouth sores until I got the magic mouth wash. This helped tremulously. I think dose reduction helped also. The dose is geared to your weigh I believe.
Good luck, sure hope you can go on your trip. Sounds like an amazing adventure!
Hi ! I too am on cape 5000 mg twice day for 14 days and 7 off. So far no issues with foot and hand syndrome. So sorry you are going through this. I do soak my feet periodically with epson salt and nightly and use a cream with 40% Urea. It was recommended by another survivor. I found on Amazon. So far my feet are ok. Trying to get ahead of side effects. Best! Happy New Year Stay Strong!
I'm impressed on how active you are staying throughout treatment, which is really important for mental well being but hard with tiredness and other symptoms. One of the difficult aspects has been whether to plan foreign holidays, when a changed scan can change things. Have you got health/travel insurance for your trip and have you updated them after your latest scan? If travel insurance gets invalidated for undeclared changes, the hospital bills and repatriation costs can be astronomical. We wouldn't get covered for travelling to the USA for example but have managed to book a week in Europe (we are in UK) and will have to tell them if the Jan scan results show further progression. If they deny cover we would cancel
I really hope all goes to plan for you and definitely feeding off your positive energy. xx
Would you mind sharing where you got holiday insurance from? I am in the UK also and had to cancel a USA holiday in October last year but hope to get coverage to go to Iceland in March or April. I am on Cape and my next scan will be later this month- I am cautiously hopeful!
hi Jackie- I am now in USA and buy good insurance that was covering Ibrance and Verzenio but when I go back to nz I am a kiwi and shuffle back to see my old oncologist. If I need to start chemo while I am away for 7 weeks it will be in a piblic hospital for now charge. So we don’t get insurance while we go back home. I wish the USA would get universal health coverage as I see that it works well.
Hi Jackie, we got ours from 'InsuranceWith' but have also previously used 'StaySure'. We found the prices were a lot better on chemo tablets than ibrance even though there had been progression, but whether that was because fewer different medications or improved pricing post covid, we're not sure. Good luck
----and I think that I have problems-----hummmm. Dear Betty, I'm sitting here crying for you, not that that helps at all. Of course, you will have this problem licked. If fact, I see that you posted this twenty hours ago and have had many replies. You are bound to get on top of this. Maybe you have, by now. You are one of us. We are surviving together.
My SEs were much worse in the first cycle- appetite loss, nausea- but have been fine since. I do get HFS but this has been better since a 10% dose reduction- now on 3600mg daily ( I am tall and overweight, began with 4000mg). I have invested in some bigger size shoes, thick socks and gel/memory foam inserts. I survived the Cologne Christmas markets with just some warmth and tingling in my feet!
I have contact with an integrative oncologist at Mayo Clinic Jacksonville FL. She indicates she has her patients do Topical Heparin Gel....says it has been a lifechanging thing...has patients back at running, soccer, tennis, etc. It is a compounded item which requires a prescription, but here is contact info for pharmacy so your oncologist could connect: (this is a pasted copy from email exchange with her).
North Beaches Pharmacy 904-241-5171 (pharmacist Zach). The pharmacist there compounds the same concentration as the Menaven gel product at 1000 IU/gram. I have my patients apply it 4x a day.
holy mackerel! Topical heparin gel sounds like a game changer! I read that study you attatxhed above which said that 90% of study women improved grade of HFS and none had to go off the their meds! I’m going to try to get from my oncologist or will order from the compound paharmact you recommended. Thank you so much for sharing!
If your oncologist needs further info, the integrative oncologist I consult with at Mayo/JAX is Dr. Dawn Mussallem (D.O.) I do work with a medical onc there as well, but she fills in the gaps...her primary forte is Lifestyle Oncology & Nutrition (encourages plant based). She herself overcame breast cancer & is now a mom. Super gal....I do telemed zoom visits with her. In order to get it, you do need a script from SOME doctor. Hopefully your onc will connect about this for you.....if not, perhaps see if you can get on as patient with Mayo to get connected with her....but that might be a process, since I think you have to go through medical onc before connecting with her. I wanted to get dosage info from her 'cuz I wanted to price shop it. That pharmacy's price is $120/240gram tube. Spread only thinly, pharmacist thinks should last about 4 months or so. You might want to price shop at compounding pharmacies near you.
I spoke to Zach the pharmacist at the Florida compounding place and he said he tries to keep the price low- $110 including them mailing the 240 gram tube. I’m having a zoom in the morning to discuss dose reducing or a longer drug holiday plus will ask about the heparin.
don't have any info on it other than reading....makes me wonder if applying milk thistle oil (such as from Andreas Seed Oils andreasseedoils.com/product... ) might help. I checked with my integrative onc who confirmed no negative interaction with cape and milk thistle at levels we'd used for supplement, so I think i might try using oil on feet to see how it goes.
If you get the topical heparin, please be sure to post update so we all know how it worked out for you!!!
I spoke to my onc today while he was on vacation in Florida…so kind of him to ask me to ring him…but he didn’t want to order the Heparin as he likes to limit all variables while figuring things out…He is very concerned how bad my feet got after 1 week of cape…and still are after 7 days off…so he suggests that I have to take a few more days off and then start back on a smaller dose. If that doesn’t work, I hate to think of moving on to a new drug after only 1 week…and it appears to be working! It has shrunk my big new lymph node back down to tiny. And my belly pains are much improved! So I hope I can sort this out.
thanks for sending the info… I am happy to read about it… hoping for a solution. I’m on day 7 off drug and feet are still red and swollen when I walk in them. So metronomic may work
to think about to discuss with onc....the heparin gel is TOPICAL, not systemic. this puts it more into the category of emollient creams....hoping he reconsiders🙏🙏
I was sad that he didn’t go for it. It sounds great and I spoke to Zach the pharmacist in Jacksonville FL and he says it is really taking off among ladies like us.
I was on taxol last summer and ordered a new pair of sandals - good brand, 1/2 size larger than usual. They rubbed my feet badly and left open sores on the tops - I'm sure you have all had experience with this. The reason I am telling you this is that a nurse friend suggested that I expose the sores to air as much as possible, rather than bandaging them. Prior to that I'd been using an antibiotic cream and bandages, but they were not healing. With no bandages and letting the air get to them, the sores healed quickly. I am afraid to wear the sandals again, even though my feet aren't swollen now.
I wasn't on cape so don't know if this will work for you. I second the suggestion re crocs - so comfy. Fingers crossed you find a solution soon.....and can you shorten your bike trip rather than cancel it? Good luck and let us know what happens!
Hi VC, thanks for you help with great suggestions. I’m going to try exposing the open sores to air more. Good suggestion for healing. I wish I could shorten but it is 6 days into the hinterland so it is really all or nothing. But instead of biking I will be able to sit on rh beach in Nz god willing!
very good suggestions. My oncologist is now away in Florida ( he is very old now) and won’t be back until after I fly to NZ but just texted me to set up a call with him. So kind as this is on his vacation!
I will discuss dose reduction or longer drug holiday. Thank you for reaching out. I will post pics when I finally make it to nz… we moved back to USA one year ago from this small island paradise. This ver next to the ferry terminal.
I will send pics! Hoping this new side effect Hand Foot from my new xeloda pills won’t derail me! One week off the pills and my sore feet are keeping me from being able to go for walks. Doc says stay off it longer than the usual 1 week break and then try at lower dose. Hope this works..
WOW, Beth, this is much too much for your poor body! I really admire your pluckiness, and your attitude is beyond simple admiration. I'm glad to see that there are so many replies. Someone may have answers for you as I've not been through such hurtful side effects.
Best of wishes that your trip is as much fun as you are hoping it will be!
hi Cindy-I am so thankful for all the great responses and I think loads of women can benefit from the advice contained here. People are so generous to take the time to share this knowledge
Hi Beth, I am so sorry about your progression and drug side effects. What a pain! I am sending this note to tell you what an inspiration you are; you keep moving no matter what and have such a genuine, wonderful attitude towards the hardships we face and life in general. I hope you make it to NZ. Sounds like you have time to heal so I’m sure you’ll be able to go. I am there now and have been since September. We head back to the states tomorrow. It would be fun to meet up here sometime. Best to you and safe, happy travels. You’ll do it! MK
Dear MK, Darn we missed each other! I’m glad you are over visiting your daughter. But it will be so hard to leave. Be prepared for big tears! I’m going to try to message you privately if I can figure out how.
My onc and nurse have emphasized any cream with a high urea percentage, applied liberally whenever you can. I recommend it. Also, soak in epsom salts as much as you can.
you amaze me! Whenever I come across one or your posts, I can’t stop reading, even when the topic isn’t related to something I’ve experienced or even a medication that I’m on.
you have been through so much recently yet you are trying to find ways to heal your feet so you can do even more exercise lol.
I have no doubt that you will overcome this hurdle and that you will have an amazing trip.
You are very sweet- I’m trying but today I took my first nap ever…sometimes I lie down to rest but never fall asleep until today. For 3 hours after getting the bivalent Covid Booster my onc wanted me to have before travel. Knocked me right out…but no pain or discomfort. And I loved having a lovely nap! I will send pics from NZ!
Hope you are doing better with your new treatment protocol. I see a post below that you are still struggling with HFS. I am so sorry to hear that. I know that many on this site gave you recommendations for things that might work and I hope you are able to find something that does so you can have a wonderful time in New Zealand and play some more pickle ball. Picked ball is big in the golf community I live in in Florida as well as throughout the area. I have not tried it but I have many friends who play. I take Epsom salt baths and they are wonderful. I have heard that Epsom salt foot soaks are helpful, too. Keeping you in my thoughts and prayers. Safe travels and have fun in NZ!
thanks for thinking of me. I love to visit my friend in fort meters who lives at a golf community and has pickle ball across the street and pools too. Good livingbexcept for horrendous traffic. I just bought some Epsom salts and will try that today. I imagine I must use tepid not hot water! Thanks for helping.
You are welcome! I actually live in Naples, about 45 minutes from Ft. Myers. It is paradise for golf, weather, etc., but traffic is not great, especially when all of the snowbirds are here. There is a great pickle ball facility in Naples that hosts many tournaments. Our community is looking to expand our pickle ball courts as it has primarily been a golf community. For the Epsom salts, I actually use pretty warm water to dissolve them. I soak for at least 20 minutes. If you take a bath in them, please be very careful getting out of the tub. The salts are very relaxing. Best wishes to you.
Just under 3 weeks away…. So I should make it over but will be rough. Cape for first week week plus the 7days off snd barely recovered my feet to walk around the house. So travel will be hard. My onc wants a few days off and then start back at laser dose. Still worried that may be too much. I started with 3 pills twice per day and now will try 2 pills twice per day.
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Ibrance and mouth blisters
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