Well…it got me!! Hand foot syndrome and mouth sores!! The side effects came on full force following my second Caelyx infusion.
Difficult eating and drinking due to mouth sores. Salt water/baking soda was not helping, Dr prescribed magic mouthwash. My pharmacist had to call my private insurance to get them to cover it. I’m not sure why they wouldn’t given a couple of the ingredients require a prescription…in any case, the $92 cost was reduced to $13 out-of-pocket for me through insurance. The mouthwash provides some numbing relief, but not for a long period of time. I am hoping that this $100 mouthwash will, at the very least, speed up the healing process. In the meantime, my husband (the cook in our house) has been making meals that require minimal chewing (mince and taters, Mac and Cheese, soup, pudding, jello) and I have been drinking Boost to ensure I’m getting the nutrition I need.
My hands started with sore, tight fingers (not much on palms). Left hand has minimal discomfort but right hand has two fingers that are continuously swollen, tight, sore and a little discoloured.
My feet started with a little soreness on the sides of the heels but they are now very sore on the balls of my feet and full heels (pressure points). I’ve noticed that I have callouses where there is soreness. Very painful to walk.
I had been doing everything I could to ward off these side effects (keeping my hands and feet moisturized continuously, icing during infusion), but here I am, flat on my arse trying to find something…anything…to provide some relief. When my feet first started, they were very itchy and sore. I tried hydrocortisone (only on sore spots) and it did provide relief. However, my oncologist told me to stop. Back to the drawing board. Keeping my feet moisturized with 10% urea wasn’t working. Then my feet started to have a burning sensation. That led me to Solarcaine (contains lidocaine). This provided short-term relief, but I found the stickiness when it dried bothersome/irritating. Next…
I find the pain and discomfort worse in the morning and evening. In the morning, I soak my hands and feet in very cold water. Then after cleaning and drying, I slather Bag Balm on my hands and feet. Some relief, plus it is moisturizing. I then take my temperature and, if no fever, take a Tylenol. So far, this has been the best combo for some extended relief. I keep slathering on Bag Balm during the day to maintain moisture. In the evening, I repeat the cool water, Bag Balm and Tylenol before bed.
My Avastin only treatment was delayed a week because Avastin affects the healing process. So they are hoping the delay will allow me to heal quicker. I also know that my Caelyx dose will be reduced due to these side effects and depending on how well I can get this under control, the Caelyx infusion may have to be delayed or stopped. I see my oncologist in a couple of weeks, so will see where we go from here.
I have been dealing with this for about a week and I have been trying everything to relieve the symptoms. There is no sign that it is going to let up soon, so I guess I have to let it run its course and hope that it clears up sooner rather than later. At this point, I would welcome a delay in Caelyx in order to get this under control. I’m sure the drugs are working because my physical cancer symptoms are gone. I hate the idea of delaying or stopping but, honestly, quality of life with these symptoms is severely deteriorated. I will know for sure how well these drugs are working when I get my blood work in a couple of weeks. I also have a CT scheduled for the end of the month.
CAUTION: Always check with your health care team before you try anything!! I am so thankful for the nursing triage system at my oncology centre…just one phone call and I can speak to someone who can confirm that I am (or not) doing the right things. Unfortunately, there is nothing on the market specifically for HFS. Everyone reacts differently to treatment, not everyone will suffer these side effects, and everyone will find relief in a different way.