What Hand-Foot Syndrome looks like

Left hand

Right hand

         

You can see every line in my hands. The redness doesn't photograph well but occurs at every fingertip and in the webbing between the fingers, especially between thumb and index fingers. This is what Hand-Foot Syndrome, a side effect of Xeloda, looks like.

Right heel: see how cracked and red? Plus a spot where skin is peeling off. Ouch!

Hand-Foot Syndrome

Xeloda's Hand-Foot Syndrome side effect has really got me these days. Today is the last day of 14 when I actually take the drugs, then I get a week off. The problem is that the pain in my palms and soles has gotten much worse over the last couple of days. It was so bad last night that I had to skip the first synagogue board meeting of the new year. I couldn't stand, couldn't walk, could hardly sit without discomfort. My hands are bad enough that it's tough to open a jar or turn off a lamp switch.

Both my palms and soles have peeling skin and all the lines that you normally don't see are visible. I have some cracks in my soles as well as some peeling skin.

H-F S happens when the chemo leaves a body. Normally that takes place via urination, but in the case of Xeloda and some other chemos, it leaves the body via the palms and soles, causing burns as though from the inside out. And the ongoing neuropathy in my toes doesn't help either.

I'll try to get Rik to take some photos so you can see what I'm talking about. In the meantime, maybe a piece of that MMJ brownie might help....

This is my right foot. Note the red areas on the heel and ball of the foot. Ouch!

Xeloda round 6 / MMJ

The fifth round of Xeloda knocked me down pretty hard. I had diarrhea and bad hand-foot syndrome for seven days, maybe longer. My hands have started to clear up as I start round 6 but I don't know how much more I can take. Tincture of opium finally cleared up 7 days of diarrhea.

I went to a medical marijuana coop yesterday and got a thorough education from the staff. Evidently some kinds of mj have more THC, the cannabinoid that makes you high, and other types have more of the cannabinoids that help relieve discomfort. I bought some salve for my feet (supposed to be helpful for neuropathy), and will use it for a week before commenting. They gave me  some "medibles:" a lollipop to suck on when pain is bad, and in lieu of a gram of MJ (I don't smoke), a 'special' brownie. 

I cut the brownie into 8 tiny pieces and tried one, even though I didn't have pain at the moment. I caught up on the ironing and went to take a nap. As soon as I lay down on the sofa I knew I was high (this is 90 minutes after eating the brownie bite). 

I felt detached from my body, had trouble focusing on a phone call, and slept hard for three hours. Basically it reminded me of morphine highs. I didn't really care for the experience but meanwhile the brownie is in the freezer. If I have nausea or other side effects, I can always take another bite.

It goes on and on

Although my diarrhea has slowed considerably since starting the tincture of opium, it's not gone away completely. My feet are still bright red and they get tender by the end of the day, and I don't have much appetite. My energy has improved, though. That's a good sign.

I'm enjoying the sunshine from my spot on the deck lounge chair, but wish I could be playing in my garden. So much still to do!

Still with the diarrhea

It started Wednesday night and hasn't stopped yet. The Lomotil prescription from my oncologist didn't help any more than the OTC Immodium.

So I called Nurse Jaque this morning and she spoke with Dr G, who gave me a prescription for tincture of opium. This helped once before when I was hospitalized for about two weeks after a poor reaction to 5FU. I've had one dose and am supposed to take it every three hours. I sure hope it helps, because given the choice, I'd rather be constipated than have diarrhea.

I was very fatigued today as well and spent a long time on the couch. Yesterday two of my best friends came over for a long visit, which turned into an impromptu dinner (rice wraps with veggies and chicken) and a large selection of incredible desserts from Bakery Nouveau. We all over-indulged in chocolate praline cake, chocolate cheesecake, twice baked almond and chocolate croissants, fruit tart, and carrot cake (burp). I felt so much better with all the company, but I was extremely tired after they left and I think it carried over to today.

The lovely sunshine today made me want to work in my garden, but wasn't a strong enough impulse to actually get me out on my hands and knees. I did sit in the hammock and read for about an hour, which was delicious. And I watered, because it's supposed to be very warm this week.

Xeloda side effects

(Don't read this if you think candid talk about cancer side effects is TMI...)

I finished the last dose of Xeloda yesterday, but the day before the diarrhea and fatigue had already begun. Yesterday I "crashed" on the way home (not literally) -- had to call my mom to have her keep me awake while driving, and yes, my car has a hands-free cell phone. As soon as I got in the door I ran to the bathroom yet again.

The diarrhea has been frequent enough, every four to six hours, that even a double dose of Immodium (the "oncology" dose) taken at each episode wasn't helping enough. Rik took care of everything while I was on the sofa. He fed and walked the dog, ordered Chinese food and then went to pick it up, fed me dinner and let me grouse to him. It's funny that even with diarrhea, I still get hungry. (I wonder, if I fasted but drank water, would the diarrhea stop sooner?)

This morning everything hit as soon as I finished breakfast -- diarrhea and crushing fatigue. I spent the entire day snuggled with the dog on the sofa, except for bathroom trips. At 2:30 PM I called Dr G's office and spoke with Nurse Jaque, who then talked with Dr G. There is a prescription for something stronger than Immodium waiting for me at the drug store. However, things may be easing up, so I may not get it.

At 5 PM I got up and went for a tour of my garden. The sun had been shining all day long, and I wanted some fresh air. I saw one fig on the fig tree, some cherries on the pie cherry trees, and MANY raspberries. There were even some Chester berry flowers already. A few potatoes left over from last year have sent up leaves. The snow peas are about two inches tall, and the red chard is growing nicely. The salad greens aren't doing too well. Maybe I should plant from starts instead of seed.... My tomatoes are a foot tall, but two of the three basil plants have died.

I'm trying to drink lots of water, I feel perkier (hence the blogging) and hope to be better tomorrow. Meanwhile no groceries, no Shabbat cooking, but Rik has walked the dog, ordered pizza for dinner and he will make the bed with fresh linen.

Back to Aredia

Dr G spoke with my dentist Dr Amy; I spoke with my orthopedist; Dr G and I conferred together and everyone agrees that my bones need more protection. So this week I started again on Aredia, a bisphosphonate that strengthens bones. Of the three major such drugs, Aredia is the oldest and the least strong. Hopefully it will not cause any issues with my osteonecrosis of the jaw and hopefully it will increase my bone strength. I first took it ten years ago when my mets were detected.

This week's infusion lasted a very long time. I arrived at 11 AM. First the nurse had to hook me up. The lab was quick and had my Avastin to me in mere minutes. That infusion lasted about 35 minutes (good to the last drop). Then we started the Aredia drip, which is supposed to take about two hours. Well, what with the whole "good to the last drop" thing, it took almost 2 1/2 hours to finish. Then it was time for my monthly double shot in the tusch of Faslodex. It was about 3:30 PM when we left and then I absolutely had to have an ice cream at Molly Moon's (earl grey with hot fudge -- yummy!). Special thanks to my friend J who sat with me the whole time, got us lunch, and kept me entertained.

I will continue with all three drugs once a month. On the other hand, the Avastin is only every other week. Hopefully adding in the Aredia will make a difference in my bone health.

I will continue on the Xeloda for the time being.

A spring bouquet from our garden!

Slow blogging these days

It seems to me that the better I feel, the less often I blog. I've felt pretty good since getting Dr G's word that all seems stable. Here's the report from last week's visit.

At my request, Dr G is putting me back on the standard dose of Xeloda starting this week. I figure, if I felt good this last time, maybe I could tolerate the standard dose better now.

I've recently noticed some arthritis in my thumbs. It's not very painful, but noticeable, especially when I use my hands to open a jar, etc. Dr G told me that although most cancer drugs actually help arthritis improve, evidently aromatase inhibitors make it worse. So I will stop the Aromasin for the next few weeks and we'll see if that helps the arthritis.

My insomnia has worsened due to the neuropathy in my feet. I feel the stinging/numbness/pain every moment of every day, but it doesn't usually bother me while I am awake. As soon as I get into bed, though, I lie awake for hours listening to my feet "talk" to me. By the time I take an Ativan it's often 2 AM, Even if I don't take an Ativan, I don't fall asleep until 2:00 or later. Both my friend J and Dr G recommended the same thing: take the Ativan earlier in the evening. So I am trying to take it at 9 PM but I don't have any meaningful data to report yet.

I am probably going to start taking the bisphosphonate Aredia again in two weeks. Dr G still needs to connect with my dentist, but I sure they will talk soon. My bones need the extra protection, and that may outweigh the risk of increased ONJ. Dr G will order the Aredia and Avastin to be given one after the other so my time in the chemo chair can be all on the same day for two hours instead of one.

Another loss

I just heard that another friend of mine has died of metastatic breast cancer. A young woman in her 30s, we became friendly when she was originally diagnosed and then when her disease spread. I had recently referred her to Dr G when she became disenchanted with her previous oncology care. She had extensive bone and brain mets, possibly lung and liver as well. I had tried to check in with her just this past week, but didn't realize that her health had failed so rapidly.

This is why breast caner is a tragedy. Here was a lovely young woman who hardly had a chance to start her adult life when her fast-growing cancer hit. She had to retire from work, could not continue the Jewish education she loved so dearly, and moved into a group house when she could no longer live on her own.

I wish I could say more, but want to protect her family's privacy. Nonetheless, I will try to go to her funeral and the shiva minyan tomorrow.

May her memory be for a blessing to all who knew her.