Foul Mood

OK...so these are fowl, not foul...but it doesn't stop the fact that I am in a foul mood.  My feet hurt.  My hands hurt, and digging out the weeds and three foot high mulberry, and two foot high hickory trees out of my perennials beds is not in the picture.

But more importantly, I'm irritated with Nancy Snyderman....or maybe just the state of health care in general. Why?  She was honest...and in talking about scans and tests, she said that we should do less (and I don't disagree with this as I feel that often a test is required just to cover one's bases...even if there are other means to find out things more easily), and accept the fact that some people will die because of it.  Starr asked if it was all about money...and Snyderman said yes...that we should do what is best for the bottom line....

Hmm.  So this means that the wealthy, who already have access to better health care, better doctors, and more adjuvant treatment than the middle class or poor class, are more valuable to our society than the common folk....and that through some quirk of fate, those of us who do not have silver spoons in our mouths, or had the misfortune to suffer a disease, accident, or say....an I.E.D. are some how lesser beings and not as important to save....

I resent the fact that I have worked. I have paid insurance, and now when the chips are in, I don't have equal  access.....and that people like Snyderman, and the insurance companies and dictate who is valuable and who isn't.  I dislike that fact that I risk bankrupting my family....I resent the fact that it seems like people who have advanced cancer, stage IV like mine, are considered expendable....I resent the fact that things which probably would ultimately REDUCE the cost of health care for me, chemo in particular, are not covered (I'm thinking rational therapeutics here--and perhaps more study to see how effective it is in seeing which drugs are most likely to work).  I didn't ask for this disease.  I do ask, however, that I am not marginalized nor made to feel like my life just isn't worth it when compared to others.

Yes...I know....this is probably because my hands and feet hurt....but I am getting weary of this...I am getting weary of attacks being made on the affordable health care act without offering a solid plan, or one which doesn't allow exclusions for pre-existing conditions....

So, forgive me...and allow me this one little fit of pique...I'm sure I'll have more....but I'm thinking that those of us who have been touched by Stage IV cancers need to make our faces known just a little more...and start roaring....Black-panther style? Probably not.  Pink Panther style? Well....I'm not so much into pink and the pink parade which is beginning to gear up because they seem to forget the MBC patients...and I certainly don't think we are a laughing matter, but we do have to get the message out there.  Our Lives Count!

Hand and Foot Syndrome

OK...so I'm a little wierded out by my feet...and sort of hesitated to share this with you, but I decided it was better that I do.  Yep..this is my right foot.  You can see how the skin is peeling off and the foot is very reddened in areas. On the upper side of my instep you can see the remains of a rash I had.  I'm not sure if the rash is from the Xeloda, or if it is a reaction to something in the salves I have been using.

I do know, however, that this series has resulted in the most painful foot and hand issues for longer than any other session....It got bad once, then the last couple of series were better...but this is the pits. I am finding it very difficult to walk and my fingers are extremely sensitive.

I do laugh when people suggest to start using salves IMMEDIATELY particularly one called Bag Balm.  I did..and I'm still a hurting puppy.  Genentech, the Xeloda manufacturers give you a little tube of Udderly Smooth, the current name for what was once known as Udder Cream.  I know it well. In fact, I have a pot of it--a large canister--as it has long been used by hand-quilters to calm the fingertips on the under-hand.  The medical field bought into it and often hands out samples for a variety of reasons.  I like it, but it is very light and I find that it just isn't heavy duty enough.

I have used Bag Balm and slather it on at night and put on socks to go to bed....and that has resulted in a rash, although it did help some.  One draw back with both Udderly Smooth and Bag Balm is that they contain parabens, the most common being Methyl-paraben and propylparaben.  The parabens are used in cosmetics, food and pharmaceuticals as a preservative (an anti-microbial).  The problem is that they are absorbed through the skin and the gastro-intestinal tract and they mimic estrogen...Not something I should be using (for more on this, please refer to this article, and I am sure that there are more in-depth discussions elsewhere on the web.)  It is extremely difficult to find lotions and deodorants which don't contain parabens...

One salve which DOESN'T contain parabens and does a really good job is Burt's Bees Miracle Salve, but it is often difficult to find.  I found another product which helps with the cracking/deep fissures and the general hurting on my feet is a heel cream which is in a stick form from Kohl's.  It is horribly expensive, doesn't contain a list of ingredients, and doesn't last long, although it works well (it sells for $10 per small stick).  Gold Bond makes an Ultimate Healing Foot Therapy cream, which smells nice and works well....not as great as the Miracle Salve for serious stuff, but for day to day it's nice.  But (there's always a but, isn't there?) it contains both methylparaben and propylparaben, and is a little hard to find. Another Gold Bond Product which is lighter yet again is Gold Bond Ultimate softening foot cream with shea butter....but I think the Ultimate does a better job..and no surprise, it also has the parabens.

Dr. Scholl's "for her" Intensive Heel Repair Cream doesn't appear to have parabens (at least I couldn't find them listed), but I don't think it works as well as the Gold Bond Ultimate Healing Foot Cream.  After hearing that someone was doing a study with Xeloda users to see if using an antiperspirant on the feet would help, I went out to find an antiperspirant....and ended up buying a men's antiperspirant as it was the only one which seemed to fit the description..but it too had parabens in it, and I don't think it did anything.

The only thing I haven't tried...partly because I don't want orange feet and partly because it seems silly is to get some henna and put it on my feet....leaving it on for I think 20 minutes....plus, it's a little difficult to find around here.

What do you use?

Xeloda and its Side Effects

Some signs of hand and foot syndrome.

Toxicity rash the first month. 

Xeloda (capecitabine) is sort of an odd drug.  For most people, it is viewed as an "easy" drug which is quite effective.  For others, including me, it is more problematic.  Usually, side effects start appearing in 7 - 10 days.  For me, they start getting bad on about day 10 and it lasts through day 21, getting slightly better, but never going completely away, depending on the particular side effect.

The most common side effect is what is known as hand and foot syndrome, not to be confused with Hand, Foot and Mouth disease, a virus with which children are often infected.   Of course it also isn't related to "Foot in Mouth disease"  to which I also often succumb. You can see the beginning of the side effect in the photo to the left. Hand and foot syndrome with Xeloda is the redness and tenderness of the hands and feet.  With me, I slough off skin, bit sheets of skin on my hands and feet.  They become tender, and have a burning sensation.  In addition, they swell and feel tight. It is not unusual for the heels, toes and sides of the feet to develop deep fissures or cracks. Up to 60% of the patients taking Xeloda suffer from this, and it varies in severity.

It isn't pleasant.  The "solution" is to slather the feet with lotions and salves.  Avoid soaking in water to prevent a bad situation from getting worse.  Several of us on the Inspire.com website joke that we would be able to do some great jewel heists because we no longer have fingerprints (the sloughing skin and the thinness of our new skin makes fingerprints more or less disappear....much to the consternation of people who are trying to take fingerprints for identification purposes, people who are trying to open those annoying produce bags in the supermarket, and for me...my iPad balks at my touch.).  The lotions are only moderately  helpful.  I liberally coat my hands feet in various salves and wear socks and gloves to bed.

When I first started taking the correct dosage of 4,000 mg a day (2,000 in morning (4 500 mg tablets) and 2,000 at night--remember I accidentally took a half dose for the first treatment) two weeks on one week off, I had massive issues.  I had diarrhea, gas, nausea, and constipation (yes, even while I had the diarrhea), dehydration, dry eyes, dry mouth (cotton mouth), cramping, stomach pain, loss of appetite.  It was severe enough that the oncologist backed it off to 3,000 mg. a day .  That took care of the most severe problems--the nausea, and diarrhea and stomach pain.

With 3,000 mg. a day, I still have: periodic constipation, hand and foot syndrome, vision changes (dry eyes which makes things sort of hard to focus on), dry mouth/cotton mouth, lack of taste, toxicity rash (the rash you see in the bottom picture which can also blister and tear easily...I call them my toxicity evening gloves), thinning hair (boy is this one annoying! I just got hair back and then I started to loose it again!), sensitivity to the sun, higher blood pressure than I usually do, discoloration of my nails and the worsening of a nail fungus, fatigue, anemia, heart burn (for which I take Prilosec--well actually it's generic form omeprazole).  My feet also often get little blood blisters, which my onc says is probably because my skin is so thin...you bump it, and then you get a blister.  Fortunately, I only had mouth sores (stomatitis) once--and that oddly was when I used a mouth wash to help with the cotton mouth (dry mouth).  For a full list of side effects, look here.

Fortunately, these are annoying, but I am able to deal with them.  Many people don't have much of a problem at all.  Often, people are put on a regimen of one week on, one week off.  My doctor chooses not to do this as he feels there hasn't been enough long term study of the effect of the chemo even though the lesser dose has been proven to be beneficial in managing the side effects.  He did offer to back it down to 2,500 mgs...but to be honest, I am chicken to do this while my tumor markers (which have always been pretty reliable for me, and since my insurance won't let me have any more than 2 PET scans a year...if that) are still fairly high.  (Currently they are at 150 and the high end of normal is 38....I started at 318).  Once my markers drop down into an area I am comfortable with, then maybe I'll reduce the dosage.

The good news is that for many people, this is an effective and fairly long lasting drug.  But like all chemo-therapies, the cancer can mutate and the particular regimen be ineffective.  This is do-able.  Is it something I would do for fun? No. But I can handle it....although yesterday when I was walking around the AQS Quilt Show in Grand Rapids, I really regretted it...my feet took a major beating....and I'm exhausted.  It is going to take several days to recover.   If I had been able to do this maybe next week, or the week after it wouldn't have been so bad.

We tend to think that this is a "mild" drug....but it is still chemo and because it doesn't cause as many serious side effects, it doesn't mean that it is any less toxic.  It is an arrow in our arsenal...and an arrow is still a weapon which may hurt us as well as kill the enemy.

Participate!

Yesterday, I spent two and a half hours at the University of Dayton working with Mary Fisher, a Phd. candidate in Physical Therapy.  Mary's a pretty interesting person, and she's doing a study on Breast Cancer patients and muscular strength and endurance.  I did part of the study with her last fall....this time was a bit more honed.

It was non-invasive...except for the fact that Mary now knows my weight and blood pressure (the weight thing is definitely not something I share, although I am 25 pounds lighter than I was 2 years ago).  I got nothing in return except for sore trapezius muscles (hey, I don't usually lift 15 pounds over my head multiple times) and the knowledge that the information Mary gathered, might someday help some other person or doctors to understand what we really go through....

Just think....if we do participate, then doctors might learn that something works....or doesn't.  Or....like the CRS study, it just might validate what patients have been saying for years....only to be dismissed.

The Army of Women frequently puts out calls for women (and men) in certain categories and looks for people who have or have had cancer and those who haven't in order to study the effects.  I have participated in a couple of studies with them, and some of them have even meant me having blood drawn and shipped off to the facility which is doing the study...once to St. Louis.

In Mary's case, she put out a call to various cancer support groups.  In my case she contacted the Noble Circle, to which I belong.  However, she said she has been having a hard time filling the study.  So....if you're in the Dayton area and can give up a couple of hours of your time, contact me, and I'll put you in touch with her and send you the flyer on the study.

What ever you can do...just might change a life or change the way of looking at the disease.