Lizard SKin (Warning: Graphic Photos)

Psalm 73:26 King James Version (KJV)

26 My flesh and my heart faileth: but God is the strength of my heart, and my portion for ever.

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Thanks for all the prayers and phone calls.  It means a lot to me to have so much support as I continue to deal with the 

November 6 was the last day I took Xeloda, 20 days ago.  As time has gone on, all of my skin that had burned like fire has died and started to peel.  Prior to taking the medicine my feet were as smooth and soft as ever.  Not now, though!  The skin on my hands and feet is coming off in large pieces.  The skin on my chest, shoulders and back is flaking off daily and doesn't seem as if it will stop any time soon.  I am posting some photos I took today of my hands and feet in their current condition.  My hands have been peeling for over a week and are still very sensitive to heat and are very tender.  I can now grip things without pain if I use a towel.  My feet started peeling yesterday in huge sheets.  They are very, very tender today.  Walking on carpet feels cool and walking on tile feels like walking on ice.  There are areas on my feet that are super sensitive and other areas, not so much.  Below are pictures of my hands, feet and the skin I peeled off of them.  There is still a lot more skin to come off my feet.

Feet before peeling:

Feet after peeling:

This the skin that came off my right foot:

This is skin that came off my left foot:

The cloud has lifted

Isaiah 43:1-2 New King James Version (NKJV)

The Redeemer of Israel

   43 But now, thus says the Lord, who created you, O Jacob,
And He who formed you, O Israel:
“Fear not, for I have redeemed you;
I have called you by your name;
You are Mine.
2 When you pass through the waters, I will be with you;
And through the rivers, they shall not overflow you.
When you walk through the fire, you shall not be burned,
Nor shall the flame scorch you.

Today is a new day and a better day.  In my last post I was one miserable human being.  The scripture above reminds me that through all I was going through and will continue to go through I can count on the Lord to help me weather the storm.  In my deepest, darkest moments I called on him to ease my pain and he did.  It kept coming back but each time I asked he would respond.  As of today, I am absolutely getting better.  I still have pain in my feet and hands although it is substantially less.  There are a lot of things I cannot do using my hands due to their sensitivity to pressure.  The pain in my feet have moved from the bottoms to the sides and I still cannot walk heel to toe.  I have to walk flat footed or the friction from rubbing inside my shoes, even with socks on, causes pain.  It's like having blisters on my hands and feet.  My chest still burns and itches but it's more like an old sunburn.  My nostrils are not as sensitive but still bleed when I blow my nose.  My fingers are beginning to itch and I am hopeful that is a sign of healing.  

We saw Dr. Arb, my oncologist on Friday and she told us that my body lacks an enzyme that metabolizes the (capecitabine) Zeloda.  1% of the population cannot take Zeloda and I am in that 1%.  It's a genetic disorder.  So, basically, the Zeloda was poisoning me and that's exactly how I felt.  I likened it to Radiation poisoning.  We asked about all the burning and itching and peeling of my skin and she said Zeloda goes after precancerous cells and any place I have had a sunburn the Xeloda will react with the skin.  That explains why my chest, arms, top of the hands, face and lips were burning so bad. She likened it to the effects of Efudex used to treat skin cancer.  (Note: The only genetic testing I had done was for the ovarian cancer gene and it was negative.)

EFUDEX:  It is a cream that is applied to the skin where there is the presence of skin cancer cells.  Wayne and my Step Dad have both used it.  And, what happens is the skin will redden (severely in some cases), it makes the skin raw because it is eating through the layers and your skin looks like angry sores.  It is very painful and burns really bad.  Your face looks like a monster.  You continue to apply the cream and gradually the cancer cells die, the skin heals and you're good to go.  

So, the doctor said it will take 4 to six weeks for the effects of the medicine to go away.  She has prescribed two new meds for me to take.  My treatment plan is called AA Therapy.  I will take Aromasin (exemestane) 25 mg. daily, once a day.  It is available through my local pharmacy. And also take Afinitor, 10 mg. daily once a day.  This medicine enhances the effectiveness of the Aromasin.  I will also use a prescribed mouth rinse, Decadron (dexamethasone) 4 times daily to prevent mouth sores.  The mouth sores are a common side effect and it is within the first 6 weeks they will show themselves.  Also, a skin rash similar to acne may happen and the doctor will prescribe something for that should I experience it.  I will take these meds continually without a break like the previous meds I was taking.  There will be a high out of pocket cost for the Afinitor and we'll find out Monday what that will be.  I will still get an Xgeva shot to protect my bones once every 3 months.  I will follow up with the doctor again on Dec. 20 for labs and to assess my tolerability of the AA Therapy.  I have a CT Scan scheduled for January, 2020. 

Thanks for all the phone calls and prayers, it means a lot that so many have reached out to me.  May God bless you all.  If you didn't reach me by phone just know that I was overwhelmed and I was also sleeping a lot.  I am looking forward to getting back to 'normal' whatever that may be. 

I love you all,

Glenda 

Here is info on the enzyme my body is lacking:

Dihydropyrimidine dehydrogenase deficiency

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Dihydropyrimidine dehydrogenase deficiency
Other names	DPD deficiency
Dihydropyrimidine dehydrogenase deficiency has an autosomal recessive pattern of inheritance.
Specialty	Medical genetics, endocrinology

Dihydropyrimidine dehydrogenase deficiency is an autosomal recessive^[1] metabolic disorder in which there is absent or significantly decreased activity of dihydropyrimidine dehydrogenase, an enzyme involved in the metabolism of uracil and thymine.

Individuals with this condition may develop life-threatening toxicity following exposure to 5-fluorouracil (5-FU), a chemotherapy drug that is used in the treatment of cancer.^[2][3] Beside 5-FU, widely prescribed oral fluoropyrimidine capecitabine (Xeloda) could put DPD-deficient patients at risk of experiencing severe or lethal toxicities as well.^[4][5]

Genetics[edit]

DPD deficiency is inherited in an autosomal recessive manner.^[1] This means the defective gene responsible for the disorder is located on an autosome, and two copies of the defective gene (one inherited from each parent) are required in order to be born with the disorder. The parents of an individual with an autosomal recessive disorder both carry one copy of the defective gene, but usually do not experience any signs or symptoms of the disorder.

Diagnosis[edit]

Detecting DPD deficiency[edit]

A small number of genetic variants have been repeatedly associated with DPD deficiency, such as IVS14+1G>A mutation in intron 14 coupled with exon 14 deletion (a.k.a. DPYD*2A), 496A>G in exon 6; 2846A>T in exon 22 and T1679G (a.k.a. DPYD*13) in exon 13. However, testing patients for these allelic variants usually show high specificity (i.e., bearing the mutation means that severe toxicity will occur indeed)but very low sentivity (i.e., not bearing the mutation does not mean that there is no risk for severe toxicities). Alternatively, phenotyping DPD using ex-vivo enzymatic assay or surrogate testing (i.e., monitoring physiological dihydrouracil to uracil ratio in plasma) has been presented as a possible upfront strategy to detect DPD deficiency. 5-FU test dose (i.e., preliminary administration of a small dose of 5-FU with pharmacokinetics evaluation) has been proposed as another possible alternative strategy to secure the use of fluoropyrimidine drugs.

Epidemiology[edit]

Current research suggests that nearly 8% of the population has at least partial DPD deficiency. A diagnostics determination test for DPD deficiency is available and it is expected that with a potential 500,000 people in North America using 5-FU this form of testing will increase. The whole genetic events affecting the DPYD gene and possibly impacting on its function are far from being elucidated, and epigenetic regulations could probably play a major role in DPD deficiency. It seems that the actual incidence of DPD deficiency remains to be understood because it could depend on the very technique used to detect it. Screening for genetic polymorphisms affecting the DPYD gene usually identify less than 5% of patients bearing critical mutations, whereas functional studies suggest that up to 20% of patients could actually show various levels of DPD deficiency.

Women could be more at risk than men. It is more common among African-Americans than it is among Caucasians.^[6]

XELODA: THE PILL THAT KEEPS ON GIVING!

Joshua 1:9 

Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.

XELODA:  THE PILL THAT KEEPS ON GIVING!

On Wednesday, November 30 I had an appointment with my Oncologist, Dr. Birgit Arb.  Since the new cancer was found in my liver we discussed my treatment going forward.  She recommended Xeloda and prescribed 4 pills at 500 mg each in the morning and 3 pills of 500 mg each at night (12 hours apart).  My first dose was taken on Wednesday night.  Zeloda is a Chemotherapy drug.  She forewarned me of a common side effect that usually showed itself in about 2 weeks.  She said my feet and hands would start drying out and cracking and to start applying creams, lotions, vaseline, etc. to those areas and sleeping with socks on in an effort to ease the discomfort.

Two days and 5 doses of medicine later the bottoms of my feet began to hurt.  The best way to describe how they felt was as if I was walking on hot asphalt imbedded with glass.  My underside of my hands began burning, too.  It all seemed as though I may be able to bear the pain so I continued taking the medicine.  I had made plans to visit my niece and her family in Bluffton, SC on Tuesday, November 5 and I seemed well enough for the trip so, off I went.  That Tuesday night I took my 13th dose of the medicine and that was the 'tipping' point for me.  Almost at once the skin on my face felt like I had 3rd degree burns.  My hands and feet also started burning.  Inside my nostrils and my mouth were on fire.  My eyelids felt as if they would burst into flames because my eyeballs were so hot.  My chest began to burn.  The tops of my shoulders developed water blisters.  It was just like someone who had radiation poisoning and were burning from the inside out.  There is no way to describe just how much pain I was in.  I shed many a tear over the pain.  I had Ursula, my niece, check my temperature several times and it was alway 98.1.  Inside my mouth began to swell and my tongue, too.  I got worried about my throat possibly closing up and seriously contemplated going to the ER.  I took a few benadryl to help with the swelling as a precaution.  What I really needed was some pain meds.  Since the opioid crises I didn't think the ER would give me anything for pain so I didn't go.  I took a couple of extra strength tylenol and suffered through the night.  The next day I didn't take any of the medicine and knew there was no way I would ever take another one of those pills.  First thing Wednesday morning I called my DR.  She called me back and said to stop the meds and to see her on the 15th and let the medicine get out of my system.  Well, I seriously thought after stopping the meds I would have immediate relief.  NOT!  Things only got worse.

So, Wednesday was a continuation of Tuesday night, my nostrils were raw, my lips looked like raw meat, the bottoms of my hands and feet were as red as fire.  My fingers looked like Vienna Sausages.  My face, chest and shoulders were red and splotchy.  My gums had receded from my teeth and would bleed with the slightest brushing.  My nose began to bleed when I had to put vaseline in it or blow it.  On Thursday, I seemed to be better but then experienced stomach cramping and vomiting.  Later on I began to feel good enough that we made a trip to Walmart for a few things and I quickly ran out of gas.  I had not been able to eat very much at all due to the sore mouth and mangled lips so I had very low energy.  Ursula nursed me through all that and I started feeling better.  Friday, I was better and I limited myself on how much I was walking.  Every step was like walking on sharp glass.  My hands were so bad I could not open a coke bottle, turn the knob on a table lamp, floss my teeth and could barely suffer through holding a toothbrush.  Buttoning my shirt, zipping my pants, pulling on a pair of socks, putting on my shoes and tying my shoes were an effort of sheer will power.  Anything I tried to do with my hands that required the slightest pressure felt as if I were grabbing hold of a tennis ball embedded with razor blades.  Never, ever in my life have I experienced such pain.

On Saturday, Ursula had a yard sale and I tried to help her.  It wasn't much but it was all I could do and of course, Ursula didn't want me to do anything.  By then, my skin had started to peel as if I had been sunburned.  The burning sensation in my skin continued but it started to get better then come back again.  The tip of my middle finger on my left hand had a place on tip that turned bright red.  It looked like a blister under the skin.  To even lightly touch that spot felt like I was slicing it with a razor blade.  On Sunday, was better than the day before but that's not saying much.  My quality of life from the beginning of taking Xeloda was a 10 and quickly went to a ZERO!  Ursula and I did a few home improvement things to her house and took it easy for the most part.

On Monday, the 11th I prepared to go home.  It was another bad day, feet wise.  Ursula had to load the van for me and I headed home.  As I was driving home the fire in my body started getting worse.  I stopped in a rest area for a bathroom break and didn't think I would make it back to the van because of the foot pain.  I also notice my nail beds were turning yellow.  I called the doctor's office and left a message with my concerns and then called Wayne.  He was working and was in the Raleigh area and he arranged for his co-drivers to take him to I 95 at Lumberton so he could drive me the rest of the way home.  I was sooooo happy to see him.  The doctor's office called back and said I just needed to give the medicine time to get out of my system and I would get better.  I really thought she might tell me to go to the ER but she didn't.  After arriving home, Wayne did all the unloading and I parked on the couch.  Walking was still causing excruciating pain and my hands were still painful as well.  Before I went to bed I found a pain med I still had from my gall bladder surgery and took that and it definitely helped with the pain and allowed me to get some much needed sleep.

Today, Tuesday, November 12, I woke up around 3 a.m. and my lips were stuck together and I was thirsty.  I got up and my first steps seemed that my feet were a little bit better.  I had to walk flat footed and hold onto the wall and anything else in my path to keep from losing my balance.  I managed to get my lips parted and drank some water, watched a little tv and started falling asleep on the couch.  Wayne got up and checked on me and I went back to bed soon after.  I was able to get even more sleep and make up some of the deficit.  My feet are better and walking on our thick carpet is somewhat comfortable.  It's the hardwood floors that create pain due to the pressure.  The end of my heels are super tender.  My face and chest are still hot and itchy.  My eyes are itchy, fingertips are numb.  Still can't open a drink bottle or turn on a lamp unless it has a push button.  Gums are getting better so, all in all I can see improvement.  I have no idea what treatment options are still open to me but we will find out on Friday and I will update this blog once we know.

As always, I appreciate all the prayers.  All of this is in God's hands and I have to trust in Him 100%.