Shifting Side Effects

I guess by the time I get through all of this I'll have it all figured out. We finally figured out how to avoid the nausea (ginger, taking Ativan during the infusion, using a motion sickness patch, taking anti-nausea drugs) and then another nasty side effect showed up. The last couple of times I had a hint of the new side effect but this last time it was pretty strong. I'm talking about hand-foot syndrome caused by the infused 5-FU. If you follow the link I have provided you can find out all the details about this, but it pretty much made my hands and feet very sensitive, made raised red areas on my hands that were blister-like, made red patches on my feet that actually made it painful to walk. The cause is that the 5-FU leaks out of capillaries and damages the tissues. Usually it's caused by pressure or friction, from walking or running  or from using tools. But all I did was pretty much sleep, I wasn't walking or using my hands. The only thing I can figure is I took a shower that was too hot. My hands were so affected that it was hard to even hold a fork. They were pretty much useless. Luckily I planned to sleep a lot so I didn't really need them. When I went to the infusion center on Wednesday to get unhooked from my 46-hour pump, the nurse told me to put a coating of hydro cortisone on the palms of my hands and soles of feet, slather on an emollient lotion such as Eucerin or Bag Balm, and put cotton gloves on my hands and socks on my feet. I did that several times per day Wednesday and Thursday. By Friday they were improving so I didn't do it as much. Today they feel better but are a touch sensitive, which could be a neuropathy.

The side effect of this side effect is that I can't do things like work with gardening tools. I'm cautioned against using a chef's knife. Also my showers need to be cool. I'll be sure to keep the water cool and use ice packs if I have to to help keep the syndrome at bay. Also I've been told to take vitamin B-6, vitamin B-12, glutamine, and a prescription drug called gabapentin.

On another topic, I should have a CT scan this week and it'll tell us what's still happening and where. If any activity is limited to my liver then we may make a slight change to the plan in order to give me a break from the systemic treatments. We would do a procedure involving loading my liver with irinotecan-saturated beads. Irinotecan is one of the chemotherapy drugs I'm currently getting by infusion. The goal would be to saturate my liver with Irinotecan which will deliver a local and sustained dose of drug to any tumors that are there. If we decide on that, I'll get all of the details and post it here.

One thing that I've noticed is that any time I'm lying down resting or sleeping, Theo is my constant companion and guardian. It's really touching that he's taken on this job for himself.

Here's him keeping me company when I was in bed yesterday:

And here he is earlier today in the living room:

What a sweet, loving boy!!

Not Anemic, CEA, Comments on Ginger

Well, I guess we can just blame my paleness and tiredness (and purpleness) on just generally feeling "punky". My RBC (red cell count) is 4.44 (normal is 3.50-5.50) and my HBG (hemoglobin) is actually a touch high: 15.2 (normal is 12.0-15.0). I guess I'll just have to get over it. I am feeling more energetic today, so I'll rest when needed but try to keep this momentum.

My regular doctor gave me a muscle relaxant to help my left shoulder and it actually seems to be helping.

Lastly, my CEA is 16.7, which in this case is good news. Since I started this version of chemo, it had actually been going up. Here are the last few numbers:

• 20.3 on 3/8/2013
• 17.2 on 2/21/2013
• 12.6 on 2/8/2013

 I started this version of chemo on February 11th. Dr. Dormady told me it's normal for the CEA to spike a little at first because it's an indication that CEA is being released from lysed (disintegrating) cancer cells. But last week I could tell he was concerned that it was still going up, but was hoping what he was seeing was the top of the beginning of a downward arc. And it appears he was correct since it has gone down to 16.7 since then. We'll look for it to keep declining with our fingers crossed. That will mean that we are winning this battle.

I wanted to touch on something that I thought about yesterday. I learned last time I was on FOLFIRI+Avastin that when I started to take ginger supplements as indicated in a 2009 Mayo Clinic study that my nausea was greatly reduced. Here's an article that I found in the Fall 2009 issue of The Olcology Report.

Anyway, what I remember then is that someone advised us to get the ginger from GNC to ensure that it's effective. So, we did, and it made a remarkable difference then. I take the 1 gram dose for six days as described in the article.

This year I forgot that advice and I ordered some ginger off Amazon, I don't remember the brand name. I had quite a bit of nausea during my first two round of this treatment despite taking the ginger. And then I remember the advice about GNC so I went there to get their ginger. I took that during the last round and I have to say, my nausea was much decreased. We also made some additional changes at the same time. I put the motion sickness patch on the night before. I got Pepcid in my drip. I tool lorazepam during the infusion. So, all of these things probably contributed in some way but I cannot discount the change in the ginger brands either. I think I'll stick with what works.

Pale and Purple

Hello everyone. I didn't post Round Three's experiences yet because I've been so tired so I've put it off. Round three was actually not as bad as round two. I put the motion sickness patch on the night before so that it was in my system the next day. And when I got to the infusion center I took a lorazepam (Ativan) to essentially knock me out. So I slept through the infusions. At the end I asked for a Pepcid infusion as well. When I got home I went straight to bed. I didn't suffer from the extreme saliva and mucus production that had been upsetting my stomach. I didn't throw up at all. I did feel very tired, but I just slept a lot and that was OK. I also got some fluids on Wednesday and on Friday because I really am having some problems with dehydration.

And dehydration is what I've been blaming my tiredness on.

But today I went to see my regular doctor for regular stuff and she commented that I look pale. I also have no energy. My heart rate is fast. I have some shortness of breath when I go upstairs or exert myself in normal ways. Plus she also said I looked "purple". I exclaimed "I look pale and purple!!" What she means is that my gums look tinged with purple and also the palms of my hands in certain places. She said that anemia or a lack of oxygen can cause that. She checked my oxygen using a little thing on my finger and it was fine. So, she's pretty certain I'm anemic. Which would cause rapid heart rate, tiredness, shortness of breath, and "duskiness" which is the purple thing. On top of all that, my throat is red and feels "cottony" to me. She swabbed it and said I have an infection on my throat. And my shoulder is still hurting... she gave me a muscle relaxer for that.

Basically I'm pale, purple, and feeling pretty bad. But it'll all pass.

I will go tomorrow (Thursday) to get my bi-weekly blood work done (a day early) and that will tell us if I am anemic. The fix for that is probably a blood transfusion, but let's wait for the blood results before we start thinking about that. I'll keep you posted.

Round Two

Last week I had my second round of chemotherapy. I have to tell you, Monday (the day of the infusion) was not good. I was so exhausted and sick, I was telling David that day that I don't want to do this anymore. I'll talk it over with Dr. Dormady this coming Monday and see if he can do anything to make it less intense. I have compared the dosage this time compared to last time (with my previous oncologist) and I see that I'm getting more of the drugs this time.

When I came home Monday I went to bed and stayed there until Tuesday afternoon. I just wanted to sleep as much as I could to escape from the discomfort.

The good news is that when I went to get unhooked from the pump on Wednesday I got a bag of fluids and felt very good that evening. I went back for more fluids on Friday and felt fine and was very energetic this past weekend. So much so that I probably did too much and tired myself out, but that's just the way it goes. I got a lot of sleep last night and feel good today.

I have also noticed more hair shedding this time. Last time I didn't lose my hair but we'll see what happens this time around. If it goes, then I will just get to have fabulous hair all of the time because the wigs will be nice ones. ;-)

This is my non-chemo week and I plan to rest up, watch the birdies, start my seeds for the summer garden, and try not to think about next week.