Counts coming up

Both my red and white cell counts are rising enough for me to feel better and go out to be with people. I'm still not sleeping well, which only contributes to my fatigue, but in general things are better.

Dr G plans to reduce my next dose of Alimta, hoping that it won't hit my counts quite as hard. I had a fascinating second opinion with Dr Julie Gralow at Seattle Cancer Care Alliance, and will post about that soon. One of her recommendations was to try bicaludamide again, given my androgen positivity. So I think Dr G will prescribe a lower dose of that as well. And he's agreed to take me off Faslodex, given my years of treatment with it and the scar tissue it has left in my tush. Time for a break.

Here's a pic of Boychik, who follows me everywhere. He's not really asleep, just in "paws" mode while I'm typing. When I stand up, he's awake and following me into the next room.

Bob tried to eat my mouth guard again this morning. For a dog with bad teeth, he sure likes to chomp on things!

Radiation etc.

It's been a whirlwind week of doctors but now I know what to expect through the next several weeks. If you remember, I told my mets many years ago that if they were quiet, they could live with me, but if they got noisy, I'd bring up the big treatments. So here we go!

1. I met with Dr Sandra Vermeulen, the gamma knife (targeted radiation) specialist, and she says she can zap my brain mets. Maybe only some of them, but some is better than none! She's going after the ones on the top of my head, where most of them live. Then she's going after the three largest in my cerebellum. We actually had a chat after our talk about where to zap, and she's not a chatty lady. Go Dr Sandra!

2. Then I saw Dr Stephen Eulau, my general radiation oncologist. He's treated me several times over the years, from the very beginning in 1999. He's an incredibly sweet, kind man, just the type of person you want on your care team. Now he will treat the two skin mets (the one on my head, the one on my chest), the enlarged lymph node on my neck, the newly diagnosed left shoulder bone met and the also newly diagnosed right lower rib bone met. I had a simulation last week and have to wear a plastic mask each time. It's got holes for my nostrils, eyes and mouth, but still it's icky. I get zapped for ten days, thirty minutes at a time. I didn't like the face mask at all, but a little Ativan helped relax me, as well as some yoga breathing and remembering to keep the top of my head touching the inside of the mask. It's pretty awful but I am tough. Tough enough to deal with a two inch round permanent hair loss. I'll just have to have a comb over like The Donald.

3. I spoke to the wonderful nurse Sally at the Cherry Hill Wound Center and she told me to stop wearing the plastic-ey Tielle bandages and switch to a gauze bandage attached to my skin with tape after I start radiation. I will be sad to lose the Tielles since they work so well and I can wear them in the shower with no extra covering, but Sally told me I can either remove the gauze bandage or cover it with Cling Wrap in the shower. Either way works fine.

4. Dr Flugstad the orthopedist was so happy to see me. It had been two years since our last visit. He's the amazing guy who fixed my left leg and kept me dancing all these years. Dr F confirmed that my left shoulder was not in immediate danger of a fracture (yay!) and that I also have some arthritis in that spot (boo). I guess not a surprise, since I have occasional off-and-on pain from arthritis in both thumbs. He also looked at the recent X-ray of my right rib and thought radiation would be fine for that spot, but noted that I have multiple bone mets in my ribs anyway. Then he watched me walk and confirmed that with the lift in my left shoe (and they were pretty amazing ankle boots) I could walk and stand without issue.

5. Then last and of course best, I saw the Amazing and Wonderful Nurse Jacque. She had to send me over to the lab for a blood draw, since I don't have a PICC line anymore. We shmoozed a little and Dr G came in for an exam.  He still wants me to see someone at SCCA for a second opinion. The only issue I have there is that they think inside the box and Dr G clearly thinks outside the box. But as he says, they know what's coming up next in the research and that can only help. So he will contact Dr Julie Gralow's scheduler. When I spoke with them she couldn't see me until January. Maybe Dr G can do more. And while I was sitting with him, he took a call from a doctor at interventional radiology about putting a "passport" in my right arm. He called me not a patient, but a close friend who is a patient of many years, gave him all the reasons I couldn't have another port-a-cath. From memory. I was so pleased to be in the room while he spoke to this doctor about me and let me overhear the details. This is why Dr G is clearly the doc for me (with apologies for the awful rhyme).

6. I also went to my weekly support group. When I gave my update -- I hadn't seen them in two weeks, since my collapse with shakes and fever while there -- four people offered to help while I was in radiation. Walk the dogs. Drive me to or from. Bring whatever I needed. It was so lovely to have friends new and old step up to help, even while they deal with metastatic cancer. Luckily when I scheduled the radiation, almost all of it will be at times when Rik can drive us both.

7. On Friday I had my latest dose of Alimta (pemetrexate), the new chemo Dr G wants me to take. I ran into a friend and we managed to get the nurses to put our chairs close together. She was alone but I had a friend and the three of us enjoyed a really good visit. This is my second dose of Alimta, and other than feeling like crap when I got home, I spent the day today lazing in bed. Dr G wants me to take Decadron on the day of chemo and for three days afterwards, but it's a very light dose for home. I hope not to have the midnight shopping mania so frequently associated with this steroid. Alimta is given once every three weeks.

That's a lot to report but it should take me through the next two weeks. I will write about how the radiation goes. Onward and upward in every direction!

Update from Dr G

Rik and I saw Dr G last week. He wants to retest my lungs with another CT to make sure my pneumonia has ended. Also I think he wants to me take a blood test for pneumonia markers. We even talked about the possibility of the pneumonia vaccine to prevent another month like this.

As far as treatment goes, we have several options --

• Pembrolizumab trial (If I qualify. Usually they want someone with fewer pre-treatments and bone-only mets.)
• Testing my tumor for micro satellite instability (this is the very newest treatment)
• Choice of chemo: Taxol (paclitaxel, which I had one time, a few years ago), Ixempra (ixabepilone), or Cytoxan (cyclophosphamide, which I had during my original early stage cancer 16 years ago)

He wants to incorporate neuroprotective medicines. I'm not sure which meds he means, but the idea is to prevent further neuropathy in my feet and hands.

Healing

I'm pleased I felt healthy enough to travel to Washington DC at the invitation of Susan G. Komen © for a breast cancer bloggers summit this past weekend.

On Tuesday I saw The Amazing & Wonderful Nurse Jacque, who gave me a Neulasta shot so that my white blood cell count would rise and make me fit for airplane travel. Ever since the news story broke about the cancer patient who Alaska Airlines asked to deboard a plane, Dr G has recommended his patients carry a letter confirming his medical opinion that they may travel. I carried the letter, wore a mask (to prevent catching something from another passenger), and showed the letter to every flight attendant. No one gave me any trouble. I flew Alaska Air.

The GelClair arrived at the hotel before I did -- a full case of it. I really only needed one box for the duration of my trip, but didn't realize I'd receive the entire order at one time. I put off worrying about to pack it to bring home.

The combination of Orajel and GelClair has helped tremendously. I still have about 10-12 mouth sores, and found it difficult and painful to chew over the weekend, but I did eat. And somehow managed to gain five pounds.

I spent too many hours in shoes that weren't supportive enough, developed blisters and swollen feet. My feet actually swelled so much that I traveled home in my UGG bedroom slippers, the only things that felt comfortable. I haven't had this experience before while traveling and wasn't prepared with compression socks.

When I saw The Amazing & Wonderful Nurse Jacque today to have her change my PICC line dressing, she looked at my feet and recommended I start wearing the compression socks until my feet return to normal size. Fortunately I have several pair left over from previous hospital stays. I've been in them all day and I can already see an improvement. I also plan to sleep again with my feet elevated.

My hand-foot syndrome has begun to recover. The skin is peeling from my left thumb. Did you ever pick at scabs when you were a child? I have that same irresistible urge to pick at the dead skin and cut it away. The henna did help.

I changed my fentanyl patch while away and reduced from 100 mcg to 75 mcg. I'll be sure to report this when I see Dr G on Wednesday. Maybe he will have me reduce it again. Or not yet.

My mouth tastes funny all the time and food doesn't taste right either. This feels like a new side effect to me, although I know many people go through it. I just don't remember going through this before.

And I should receive some news on next chemo steps on Wednesday. Hopefully not Taxotere. That one dose and its ridiculously painful side effects is plenty, thank you.

More soon on the Komen © blogger summit later.

Major Taxotere side effects

On Friday the major Taxotere side effects hit me hard. I would have chalked it up to participating in the Gilda's Club fashion show and luncheon, since invariably something goes wrong for me that day, but the discomfort continues all weekend.

I had offered to speak in a short film about Gilda Radner and the impact her life continues to have 25 years after her death. This brought me to the Westin at (for me) they very early hour of 10 AM, dressed to the nines and prepared with memories and a quote from Gilda. The filmmaker asked me a few general questions, I shared my quote at her request, and she seemed pleased with my short interview.

The luncheon featured a photo booth where a (volunteer?) photographer took pictures of people in front of a cororate-sponsored backdrop. I got in line since I had dressed so well and here is the photo he took. (I made a copy with my iPhone.)

Karan Dannenberg, who dressed me for my first Gila's Club fashion show (which I never attended, due to a hospital stay), recognized me, as she always does, immediately said "Nicole Miller," (the dress's designer), and chatted me up for a few minutes. The shawl is courtesy my mother.

Back to Taxotere side effects.

FRIDAY
I went from the Westin straight to my oncologist's office, hobbling on both feet. Dr G and Nurse Jacque looked at me and said "hand-foot syndrome." Now why didn't I recognize that? Dr G told me to go home and start the henna again, since I believed it helped me last time this happened. He also prescribed a short, tapering course of steroids to reduce the swelling in my hands. For the pain in my mouth (mucositis? stomatitis? mouth sores, for the laypeople among us) he wrote a scrip for 25 mcg Fentanyl patches. The patch form delivers a steady dose of pain relief for 72 hours. He also gave me an Rx for more hydrocodone to relieve the break-through pain.

Next I called my naturopath for a recommendation on more ways to treat the mouth sores. Dr Bufi suggested gargling with baking soda mixed in water but not too strong. I should also have asked one of these docs for some Magic Mouthwash, but I could barely walk by then and wasn't about to go to yet a third (compounding) pharmacy.

At home I mixed up some henna, put on my pajamas, and slathered my feet with it. Even the cool sensation helped. Now my feet and hands are bright orange but the henna does seem to help.

My friend H came over and walked the dogs, helped me change the bed linens, and cooked us a lovely Shabbat dinner of Vietnamese spring rolls with fresh vegetables and fried tofu and homemade peanut sauce. After dinner she taught me how to get started on the iPad a friend gave me. We spent a lovely evening together and I was in bed by 10 PM.


SATURDAY
I woke up at the crack of dawn to feed the dogs. At least they bear with my stiff movements and are happy to go back to sleep with me after they eat. They're also willing to poop outdoors and saved me the discomfort of trying to walk them.

I started the steroids as instructed before breakfast and stayed in my jammies most of the day but at some point I couldn't stand myself. I took a shower and actually dressed and sat outside in the sunshine. Then I took each dog into the shower for a quick shampoo which they desperately needed. I Skyped with Rik's family to show off my clean, wet doggies, spoke with my mother and felt much improved by this point. However, I am still popping hydrocodone every 3-4 hours for breakthrough pain in my mouth and gargling with diluted baking soda every hour. It was hard to get a forkful of food into my mouth at dinnertime.

The rest of the day passed reading a new book by Michel Faber (not quite as good as I'd hoped for),  eating leftover fesenjan with rice for dinner. and watching the second half of The Music Man. Robert Preston! I would have fallen in love with him to if he'd used the "think system" on me instead of Shirley Jones. And little Ronny Howard was only eight when he made this movie. Such talent evident at such a young age!


SUNDAY
I slept off and on (remember, taking steroids?), woke up early again with the dogs, fed 'em and went back to bed. Around 8 AM I got up, ate some yogurt, drank a mocha, and reapplied some henna to my left hand. Still haven't showered or dressed or walked the dogs but I see some of that in my future. Plus lunch out with a friend.

It's time to stop blogging and move on with my day. I do want to get out to see my friend. The sun is shining and I refuse to let cancer side effects make me a prisoner in my own home. But on Monday I'm going to have a serious talk with Dr G about how this is not the way to maintain quality of life.


And that Gilda quote I chose?

"Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious Ambiguity."

Ibrance update

The first three days of Ibrance were full of mild nausea, moderate fatigue, and general ill-feeling. Thankfully by the Monday I felt like myself again. The fatigue has continued, but who doesn't appreciate an afternoon nap? The first two weeks were basically fine.

Today, the beginning of week three, started with more fatigue (i.e., I didn't get out of bed until after 1 PM), and then moved on to diarrhea. So I am still in my pajamas, even though it's lovely outside and I had planned to run errands and do some garden work. Thankfully Dr G gave me great meds to address the diarrhea.

I'll take the Ibrance for one more week (21 days total), then get a week off. Dr G wants me to have labs taken again in two weeks. I'll see him after Passover and hopefully start another Ibrance cycle if my white, red and platelet counts stay high enough.

So I'm taking today off and will nap again in between doing loads of laundry. And that's life on chemo!

A week with Ibrance

This week I've been getting used to Ibrance (palbociclib). This is the brand new chemo recently approved by the FDA.

I took the first dose last Thursday morning and felt woozy and slightly nauseous all day long. After asking my nurse, I switched to taking it at night. Her theory: if I took it at night, the nausea etc. might not bother me as much. All weekend long I was still slightly nauseous and tired, but by Monday morning I felt like my usual self. That's continued for the rest of the week.

Other side effects have included joint pain in my wrists and elbows as well as in my hips, but hip pain was a chronic discomfort long before I took the first dose of Ibrance. I've felt moderately fatigued, and sleep about 12 hours a night. If I feel nauseous, I take Ativan and it stops the nausea but also puts me to sleep. So I've napped every afternoon as well.

I've had an odd side effect. I've felt a strong need to urinate, combined with low back pain, that caused me to suspect I had a urinary tract infection. Lab tests indicated no trace of an infection, but I still had that too- frequent urge to "go." Nurse J is looking into this as a possible side effect, and a friend who is on the extended trial at Swedish told me that one of those women reported something similar. We shall see. I've been taking AZO over-the-counter to help deal with the pain and discomfort I experience at night. Last night was the first night I slept straight through from 1 AM (the last time I gout out of bed to pee) until noon.

Now it's time for my nighttime snack. Ibrance must be taken with food. Let's see, shall I have a bowl of cereal? Cracker with cream cheese or nut butter? Half a toasted bagel with butter? My stomach grumbled at that last, so bagel it is.

Do send me your ideas for a quick and tasty late night snack, preferably low in sugar. I clearly have to expand my snacking horizons...

Ibrance tomorrow

Today is my last day before starting Ibrance (palbociclib). This is the drug the FDA approved on February 3, 2015 -- only five weeks ago! -- that my health insurer has approved as a treatment for me, and for which they are willing to pay $10,000 per month. And it's a pill! I look forward to being much less tied to the chemo chair.

It has the usual side effects, with a special emphasis on neutropenia, the fever accompanying low white blood cell count. I've been fortunate in this long dance with cancer that only a few chemos have had intolerable side effects. I'm hoping that palbo will fall into the majority camp and be both tolerable and effective.

In the meantime I've tried to enjoy my three week chemo break before starting the new stuff.

The latest

On February 3, 2015, the FDA recently approved the newest drug for my kind of metastatic breast cancer, Ibrance (palbociclib). Last week, Dr G told me he wanted me to try it. Last week my health insurance company approved one month's supply. Yesterday the pharmacy called to tell me the drug had arrived. Now that's what I'd call fast service.

Dr G wants me to take it because palbociclib was first used to treat brain cancers and I have brain metastases. Abraxane was beating down my red and white cell counts and my platelets, so it was time to move onto another therapy.

According to the website, "IBRANCE is a prescription medicine that is used along with the medicine letrozole for the treatment of postmenopausal women with estrogen receptor (ER)-positive, human epidermal growth factor receptor 2 (HER2)-negative advanced breast cancer as the first hormone-based therapy for their metastatic disease."

You can read more about Ibrance here. I'll be sure to blog about how it affects me. Let's hope again for good tolerance, limited side effects and fast work at reducing my tumor markers!

More white blood cells at last

I had labs last Monday, last Friday and again yesterday. Dr G finally approved chemo since my white blood cells had increased enough (not sure how much is enough). I ran into him in the hallway and he said that we may be at the end with this cycle of Abraxane. It has to be effective without taking me down a little more each time. So he will do some thinking and research, as will I, and after my scans next week, we will perhaps make a change.

Tumor marker down again

Just a quick update to say that my tumor marker went down another 30 points after last month's chemo. Dr G is watching my red cell count (I am a bit anemic). My white cell count is okay but my platelets are low.

I started another round of Abraxane again today. Plus Avastin and Faslodex (two shots in the tuchis). I'm still taking Aromasin daily as well as Cymbalta, L-glutamine powder and gabapentin/neurontin to help with the neuropathy in my feet. And a multivitamin. And vitamin D (not so much sunshine here in the Pacific Northwest). And calcium/magnesium. I'm sure there's something else mixed in there.

How do I keep all this straight?

Tumor markers down

I saw Dr G last week and after repeat scanning of my liver and brain, it appears that my mets are stable and my tumor markers have dropped another 50 points.

The potential infection in my port line may or may not exist. Last week I saw an infectious disease specialist who is not convinced that I have an infection. He wants me to stop using my port for blood draws a few days before using it for chemo, to give anything that might be brewing a chance to heal. So I will go early to chemo, have my blood drawn for labs, and spend an extra hour in Ballard waiting for results, instead of having a phlebotomist stick me in the arm, and then run out of usable veins in a matter of weeks. That's why I got a port in the first place. Lymphedema in one arm means no needle sticks; crappy small veins in the other arm means I prefer to use the port. And no one wants to have to stick me in the feet or in the neck, the best other options. Uggh….

Back for more chemo tomorrow!

Chemo update

I finished the third dose of Abraxane last week and this morning I noticed that my hair has started to fall out. Right on time, I suppose. I made an appointment for tomorrow morning with the hairdresser to buzz cut my hair and trim my wig. I may want to buy a second wig in a slightly different color. My wig, which cost a lot of money and is artificial, is much darker than my hair color now after a summer in the sun.

Other than hair loss, the side effect from Abraxane that bothers me is the increase in neuropathy in my feet and its beginning in my fingertips.

My fingertips aren't painful, just a little sensitive. The neuropathy hasn't spread further down my feet; it's still confined to my toes, but the intensity has sharpened dramatically. I will try to get in to see an acupuncturist.

My feet hurt so much most nights that it can take me about four hours to fall asleep naturally. If I need to be up and active early in the morning, I take Ambien and hope that it gives me a full night's sleep. I just don't want to be dependent on it. So I'm learning to get by with less sleep.

I'll try to remember to post a photo tomorrow after my buzz cut. Hopefully the hairdresser will leave a little hair, maybe half an inch in length, so that I'll look trendy instead of bald.

And I am so thankful that I had my eyebrows tattooed a couple of years ago! Now I won't see a space alien, or a balding brother, when I look in the mirror.

Resting up or recovering?

Ever since Rik came home I have spent a lot of the last week sleeping or napping.  I think I am making up for lost sleep (dogs waking me every morning at 5 am) while Rik was away. Or it could be regular Xeloda/Methotrexate fatigue. I am looking forward to having the rest of the month off of chemo!

My tongue is much better but lately my BRONJ spot has been bugging me. I am going to try to see my dentist this week. I've had multiple infections in this spot in my mouth and I don't want to go to Bulgaria already sick with something.

Speaking of, I feel almost ready to depart. Still some medical stuff to take care of (unbelievable! I've been doing this for weeks now but I keep forgetting things.). Money issues all squared away, packing list started, borrowing a mid-size suitcase from a friend, etc. Just have to learn the last two songs…..

Post-Xeloda stuff

I finished my recent round of Xeloda last Saturday and by Monday the side effects kicked in hard. Painful numb feet (neuropathy and Hand-Foot Syndrome), cracked and painful hands (Hand-Foot Syndrome again), fatigue, diarrhea etc. Plus Rik is away and so I have picked up all his daily chores in the meanwhile, such as waking up at 6 AM to feed the dogs, walking the dogs twice daily, and more. It makes me more tired than usual, and perhaps that's why I feel the Xeloda after-effects more than usual.

I had my last major infusion (before going to Bulgaria) of Avastin, Aredia and Faslodex yesterday. It took more than three hours plus the time I waited for Dr G to sign the orders. (I do think he's the best, but getting the details done while I wait just frustrates me.) Then of course I had to fight rush hour traffic, feed and walk dogs. By 6 PM I was crashing. Good thing I predicted this would happen and moved choir rehearsal away from here so that I could sleep.

Rik texted me at 1 AM this morning. (I don't think he read the time difference correctly.) But it was our first chance to "talk" since he left. Even though texting is no substitute for a real conversation, we got caught up a bit.

PET/CT results and new plan

The results of my recent PET/CT scan are the typical, some good and some not-so-good. Nothing has grown a lot, but I do have some new mets. Dr G has decided it's time to add a new drug to the cocktail.

After repeatedly going back and forth over ixibepalone (Ixempra), he checked on the likelihood of peripheral neuropathy this drug causes. 88% of people taking Ixempra develop neuropathy! That is way beyond what I consider an acceptable risk and is inconsistent with trying to balance treating my cancer and living with it. Fortunately Dr G agrees.

In 1999, when I was originally diagnosed with early stage breast cancer, I chose to receive CMF -- Cytoxan, Methotrexate and 5FU -- instead of Adriamycin. My thought at the time was that if my cancer came back, I'd still have a strong drug to go to. And since my paternal grandmother had stage IV breast cancer, I kind of suspected mine might return at some point.

Now Dr G has decided to give me Methotrexate again, since it did a relatively good job in 1999 and was quite tolerable. It comes in IV and oral forms, and he is trying to get my health insurance to approve the oral tablets. If they do, I will take M twice a day on one day, then repeat a week later. It's greatest side effect is that it causes low white blood counts, potentially putting me at risk for infection. I don't know if I will also receive Neulasta to boost my white count.

Now I am waiting for approval and the meds to arrive. In the meantime I started round 14 of Xeloda, went back on Avastin after my second cataract surgery, and continue with Aromasin and Faslodex.

Cancer treatment is very complicated!

I am a Bad Girl

Sorry I haven't posted more. When I feel well, I tend to be too busy to blog. Here's the recap:

Dr G says my numbers are good. The tumor marker has gone down another 20 points, so I am staying on Xeloda for another month. But somehow I got hooked on the nightly Ativan. Of course, I'd been taking it for about two months... Dr G recommended it as a way to "quiet" my feet at night, by taking 1 mg of Ativan an hour or so before going to bed.

Sadly, Ativan is a bit habit=forming, and after eight weeks, 1 mg was no longer enough to give me good sleep. So now I am dealing with rebound insomnia. I didn't sleep at all for a couple of nights, then took an Ambien, then didn't sleep again at all last night.

My feet continue to feel numb and painful at the toes. The neuropathy is a holdover from almost two years ago when I was on Abraxane. It leaves the body very slowly, in some cases never. So it's lingering in my feet at the toes, the last extremities.

In any case, I've felt well enough to go to synagogue, out to dinner, cook dinner, etc. Yesterday was the start of my second week off Xeloda, and I hope to feel even better and get more sleep!

Good news on tumor markers

Sorry to be slow in reporting the good news, but I have had extremely low energy for the past ten days, which is why I haven't blogged much.

Last week's labs showed a decrease of more than 40 points in my tumor markers, now below 200 for the first time in a long time. Yay!

Dr G says my feet are "barely tolerable" but we agreed on a new regimen. I will have two weeks off between Xeloda cycles. As of today it's been one week and my feet are a little better, my hands too. I hope that an additional week without therapy will help.

The diarrhea has stopped but it lasted for about a week.

A friend came across the idea of using henna to aid in Hand-Foot Syndrome. The Pub Med article is here. Monique Doyle Spencer, who has used henna successfully to treat her HFS, posted about it in her blog, http://xelodasideeffects.blogspot.com.

The fatigue continues to knock me down. Yesterday I took and morning nap, went to my support group, and took an afternoon nap afterwards. Today I slept until 11 AM, missing a meeting, and I'm ready for another snooze now. I don't have much energy for house chores, except laundry, but Rik has picked up making dinner, shopping, and much more.

I hope this additional week off Xeloda will help restore energy as well as give me more comfort in walking. I'm getting very good use out of my bright pink UGG bedroom slippers, the only things I can tolerate walking in!

Diarrhea again

The Xeloda pattern seems to give me diarrhea at the end of the second week or the beginning of the third (off) week. Today has been miserable, with tummy upsets. I am taking the tincture of opium but not sure it's really working. It's holding back each round of diarrhea by about six hours. I can take it more often (up to every three hours) but I don't want to go too far in the other direction.

I got on the sofa right after breakfast and slept for several hours, then woke up to use the bathroom, drink a glass of water and eat some crackers. This is also the part of the cycle when I lose a couple of pounds -- I don't have much appetite and I'm afraid to eat all the yummy fruit we have in the house. So it's BRAT for me (bananas, rice, applesauce and toast). And water.

My feet are still red and painful, same for my hands but not quite as much. I see Dr G tomorrow so will faithfully report all these side effects.

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!