Friday, August 6, 2010

So Far So Good!

I went back to M.D. Anderson for my yearly checkup, bone marrow + aspiration. Things are about the same so I consider that good news considering the alternative! I’m still taking the chemo by pill twice a day. I also started taking blood pressure medicine again so far so good.

I apologize to everyone for not getting back with you or posting more often. I’ve been so busy lately with different things life has thrown my way hence the high blood pressure. I still have most of the same symptoms from before that people with SM have learned to just live with but it’s been awhile since I’ve been in anaphylactic shock. I keep the shots handy because we all know how fast things can change.

I recently joined Face book so if you like look me up: Kevin Shoemake

If you read this say hello and let me know how you are doing.

Kevin
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Friday, May 14, 2010

Hello everyone!

My foot surgery went well, I'm still recovering. Been really busy lately, I recently joined Facebook and I'm loving it. I've reunited with so many close friends I've lost touch with over the years :) I head back to MD Anderson in July for another BM to see how I'm doing it's part of the study I'm on. I've had a few close calls but for the most part I'm doing OK. Still playing music, trying hard to keep a positive attitude about life.

I hope all my Masto friends are doing OK, I would say great but we all know you are doing great if you are just OK ;) Take care and God Bless you!

Your friend and fellow masto victim,

Kevin
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Tuesday, March 30, 2010

Surgery

I’m having surgery today, I’m sitting here pretty nervous so I decided to write about it on my blog. I have been retaining a lot of fluid on the bottom of my foot near the big toe area, looks like I’ve messed up the little bone and possibly tore something. I’m pretty nervous about this surgery it’s the first surgery since I was diagnosed with SM. I’ve been putting off going to the doctor for several months I guess I knew they would have to do something to fix it.

I apologize for not writing more often or answering people’s questions. We finally finished moving into our new place, we had so much stuff to sort through. I hurt my back, had surgery coming up on my foot along with my mother-n-law recently having 3 stints put in due to blocked arteries to her heart. She is recovering well she’s staying with my wife and I. My wife took a week’s vacation so she could be home to help take care of us.

If you feel like it toss me a quick prayer, I’ll write as soon as I can to let you guys know how the surgery went.
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Monday, November 9, 2009

Small update – Combo Post: Friends / Problems

When I first started this blog I felt kind of silly posting about my illness and problems. I was like who cares about my problems, who in the world is going to actually read this stuff? To my surprise I’ve had the pleasure of talking to half a dozen wonderful people regarding Masto, not only are they awesome people and I feel better for knowing them it’s made myself worth shoot through the roof to feel like I’m actually helping people. I find that a lot of you are facing the same problems I faced early on with this disease. You have no clue in the beginning as to what is happening you just know this is not in your head like so many Doctors, Family and even friends may try to make you think. They’ll say things like you look fine to me stop being lazy, they may say things like it’s all in your head go see a shrink, I’ve had one Doctor recommend I read this book to name just a few.

I’ve been feeling really well for about 3 years now since I started the Dasatinib (chemo in a pill form those that do not know) a study Dr. Verstovsek allowed me to take part in. Now don’t get the wrong impression I still have some problems. Recently I’ve had about 3 near misses where I was concerned I may go into anaphylactic shock. I’ve been battling with what appears to be gout, it’s the ball of my foot around my big toe and boy is it painful. I went in for it about two weeks ago and they put me on steroids masto patients best friend, even after taking all the pills it began to get worse, sharp pain along with lots of swelling, I could hardly walk on my right foot. After coming home Sunday from deer hunting, I went back to see my Doctor she needed to deaden the area and then poke a large needle kind of like how they drain a knee of fluid. Let me tell you something call me a wuss that was some serious pain. She drained a very large amount and I should get the results tomorrow. I let out a holler that the entire clinic took notice. I was stung in three different areas by some unknown insect that left me itching like a mad man, that all seems to be clearing up now.

I hope everyone is doing well I apologize for not writing something sooner I’ve just been very busy with going to court, taking my girls to volleyball practice, out of town games and now Basketball has begun along with the rest of deer season. You women like to shop and we country boys love to hunt.

I would love to hear from everyone just to see how you are all doing.

Your friend,

Kevin

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Wednesday, September 23, 2009

The BUG has landed...

Looks like the flu has arrived, one of my girls came down with the flu earlier this week, she is finally doing better and returned to school today. My youngest daughter is home with the flu now. I’m constantly washing my hands trying my best not to catch it.

For those that do not know it’s really hard for SM people to overcome common colds, flu and other type of viruses. I can only speak for myself I cannot take any cold medicines that have preservatives or aspirin in it. So that basically eliminates all the good stuff, I have to rely on Tylenol for just about everything. I’ve found this really good nose spray called Astelin that really clears me up it’s pricey as hell though.

I apologize for not writing sooner we have been so busy with school starting up, volleyball season and both girls playing, lots of out of town games and of course day to day struggles.

I have a couple of articles I wish to write about, I just do not have the time to sit down and do so at the moment. I hope all my masto friends are doing OK.

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Sunday, July 26, 2009

Share your Mastocytosis Recipes here!

I don’t know about the rest of you but I love to eat good food, it’s also extremely challenging for us since we tend to be allergic to anything that makes our mouth water. If you have a good recipe you would like to share with the rest of us please do so here, I know we are always looking for something new and tasty.



If we can get enough participation with recipes I'll lay it all out and make it available in PDF. Then we'll have our very own Masto Cookbook!

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Thursday, July 23, 2009

The Results are in!

I had my first small Margarita in 13 years. My friend is the bartender at this very nice restaurant we tend to eat on once a week. He looked at me like I was completely crazy tonight when I ordered a margarita, he’s like Kevin I thought you are allergic to alcohol, I said well I’ve never really found out how I would react, that everyone with my illness reacts differently. So I check the ingredients of the margarita mix it had preservatives so he made my margarita from scratch, poured in the tequila and rounded the glass off with some salt. Now understand I only had him make me a small margarita no sense in going over the top on my first attempt drinking my first alcoholic drink in 13 years. I sipped it lightly at first waited several minutes between each drink, so far nothing. It’s been 3 hours and no reaction what’s so ever.

My friends and wife could not believe how excited I was about drinking a mixed drink, then again they haven’t gone 13 years either. So what I learned is possibly I can drink but I still need to be on guard and drink moderately no need in overdoing it. It really felt nice to be able to go to dinner with my friends sit down with everyone and order a margarita with the rest of them even if I only ordered one about half the size and wound up only drinking about half of it. I almost forgot I honestly felt like I had a very slight buzz! J

Cheers,

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Information Sheet for Patients and Caregivers!

The Mastocytosis Society,Inc. Information Sheet for Patients and Caregivers


This is a brief introduction for new patients and doctors who are unfamiliar with the management of mastocytosis. The information presented here, combined with that available in the cited references, provides a starting point from which to approach understanding, treating, and living with this rare disorder.

Mast cell disease, or mastocytosis, is characterized by the proliferation and accumulation of mast cells in a variety of tissues and can affect either sex at any age. Definite diagnosis is made by demonstrating an abnormal accumulation of mast cells in a biopsy, usually of the skin and/or bone marrow. Other causes for symptoms should be ruled out, and blood and urine testing for mast cell products may be suggestive of the diagnosis. When performed properly by experienced personnel with access to current information on recommended protocols the results of these tests will be useful in diagnosing and evaluating mastocytosis.

Mast cells are widely distributed in nearly every organ of the body, mainly close to blood and lymph vessels, nerve endings, and skin and mucous membrane surfaces. They develop from immature cells produced in the bone marrow, which migrate to the tissues where they mature.

Mast cells produce various chemicals which normally serve protective, inflammatory and regulatory functions as they interact with white blood cells and tissues. In mastocytosis these chemicals, or mediators, are abnormally abundant and cause symptoms.

Mast cell products (mediators)

Some mast cell products are stored in granules within the cell, and others are produced in response to stimulation by the immune system or by drugs, chemicals, or physical factors. Below is a table of some factors which can cause mast cells to release their products. Stress, strong emotions and estrogen can increase their effect.

The products present in granules and ready for immediate release on stimulation include histamine, heparin, tryptase, and chymase. These chemicals cause, and to some extent regulate, allergic and inflammatory changes, and are involved in tissue building or repair. In response to immune system activation of the mast cell, arachidonic acid within the cell is converted into prostaglandin D2 and leukotriene C4, which restrict air flow in the lungs, stimulate mucous formation, and attract some kinds of white blood cells.

Mast cells also generate several cytokines, which are proteins that interact with white blood cells and tissue cells to continue the allergic or inflammatory response.

Symptoms

The symptoms of mastocytosis vary from person to person and may occur as "attacks" or as simply fatigue and a feeling of ill health. Over time, symptoms may become more frequent and more severe. The rate of progression differs from person to person, and there may be an improvement in symptoms for long periods of time. The type and severity of symptoms can also vary greatly from person to person or from one episode to the next. Often, seemingly unrelated symptoms comprise an individual's personal pattern of mastocytosis. These may (or may not) include: flushing (temporary skin redness), itching, hives,bruising, and skin sensations such as tingling. Other symptoms experienced by many of the people with mastocytosis are nausea,vomiting, abdominal cramping, occasional or frequent diarrhea, and excess stomach acid or ulcers. The person may experience unexplained fractures, mild to severe pain in bones, joints, or muscles, enlargement of liver or spleen, bladder pain, heart palpitations or rapid heart beat, chest discomfort, shortness of breath, light-headedness, fatigue,weakness, weight loss, respiratory symptoms including asthma. There may be depression, poor memory or irritability; also intolerance to heat or cold or to a change in temperature. Other symptoms include headaches,fainting or near fainting, and recurrent anaphylaxis.

Treatment

Because there is not yet a cure for mastocytosis, treatment is aimed at reducing the frequency and severity of the release of mast cell products and at countering the effects of mast cell products which are inevitably released. Most patients will achieve relief of symptoms only by employing measures in both areas.

Avoidance of the factors which are known to cause a reaction for the individual patient, and cautious evaluation of other factors, such as those listed in the Table below, are important in the management of mastocytosis.

In using drugs to counter the effects of mast cell products,treatment must be tailored to the individual patient. Most commonly, H1 antihistamines such as chlorpheniramine or hydroxyzine are used to decrease the skin symptoms, vasodilation and mucous secreting actions of histamine. Stomach symptoms generally respond well to H2 antihistamines, such as cimetadine or ranitidine, which can also help reduce skin symptoms.

Aspirin or other non-steroidal anti-inflammatory drugs, if tolerated by the patient, provide relief from flushing and lightheadedness by blocking the body's production of prostaglandin D2. These drugs can cause unexpected severe reactions, though, and their use must be instituted cautiously under careful medical supervision.

Cromolyn (disodium cromoglycate) is a mast cell stabilizing drug which is frequently effective in reducing skin and gastrointestinal symptoms as well as mental and other systemic systems.

For severe diarrhea or malabsorption, collection of fluid in the abdominal cavity, and continued anaphylaxis which fails to respond to other measures, systemic corticosteroids may be required.

People with mastocytosis should carry injectable epinephrine, and they should know how to inject themselves if necessary to treat anaphylaxis.

There are other medications which may provide symptomatic relief if the ones mentioned above are ineffective or undesirable for a particular patient. No new medication or remedy should be started without careful consideration and close supervision, in case of an unexpected reaction.

Prognosis

It is not yet possible to predict the course of mastocytosis in any individual person. When involvement is limited to the skin, symptoms may improve or clear entirely, but it is also possible for the disease to progress to the systemic form. In about half the young children affected, symptoms disappear as they reach adulthood.

When the mast cell infiltration is systemic, symptoms may progress slowly over many years or may suddenly increase temporarily or permanently. The patient may even progress to the more serious categories of disease.

For the small percentage of patients who develop an associated hematological disorder, the course varies, and the prognosis depends on the associated hematological disease. ( 2 )

It is very important for the patient and the doctor to maintain good communication and to work cooperatively to achieve the best possible symptom control. Communication with other doctors caring for mastocytosis patients, and with other persons who have the disease, is important in order to maintain a support and information network. The affected person, or the child's parents, should strive to become educated about mastocytosis and to be aware of their individual needs and responses to triggering factors. A recognized medical warning device, such as a MedicAlert bracelet, should be worn, and extra caution is needed when undergoing dental work or surgery.

The Mastocytosis Society provides education and support to people with all forms of mast cell disease and their doctors, encourages research, and hopes to help find a cure for the disease. The Society also maintains a list of consultants who are available to advise professionals caring for a mastocytosis patient. Because of the rare nature of mast cell disease, we encourage doctors and patients to register with the Society in order to facilitate the communication and information exchange which will hasten the achievement of a cure.


Classification (adapted from (1) )

The following is a useful classification of the kinds of mastocytosis.


Cutaneous mastocytosis: Skin involvement only. This may include:

Urticaria pigmentosa: The typical rash of mastocytosis in the skin.

Solitary mastocytoma - a clump of mast cells restricted to a small area of the skin.

Diffuse cutaneous mastocytosis - skin involvement without urticaria pigmentosa or telangiectasia macularis eruptiva perstans (distinctive patches of discolored skin with small blood vessels on a reddened background. If the skin is heavily infiltrated with mast cells, the release of large amounts of mast cell products may cause systemic symptoms.


Systemic mastocytosis with or without skin involvement: Mast cell infiltration of at least one internal organ (like bone marrow or gastrointestinal tract). (2)

Mastocytosis in association with hematological disorder, with or without skin involvement: For example: leukemia, lymphoma, and myelodysplastic or myeloproliferative disorders.

Lymphadenopathic mastocytosis with eosinophilia, with or without skin involvement: Enlarged spleen and lymph nodes, infiltrated with mast cells, along with a blood count high in eosinophils.

Mast cell leukemia: This is rare but is the most serious form of masocytosis. The treatment and course of the disease is dictated by the leukemia.


Table of mast cell degranulators (adapted from (3) )

Allergens and other immunologic stimuli

Exercise

Physical stimuli (heat, cold, sunlight, friction, pressure, vibration)

Bacterial toxins

Venoms (snake and insect, especially bee and wasp stings)

Biologic polypeptides (released by intestinal roundworms, jellyfish,crayfish, and lobster)

Polymers (Compound 48/80, dextran)

Drugs: Aspirin, alcohol, narcotics (codeine, morphine), polymyxin B,amphotericin B, D-tubocurarine, quinine, iodine-containing radiographic dyes, scopolamine, gallamine,decamethonium, reserpine.

References:

1. Dean D. Metcalfe. Classification and Diagnosis of Mastocytosis:Current Status. J Invest Dermatol 96: 2S-4S, 1991.

2. Linda Golkar, Jeffrey D Bernhard. Seminar: Mastocytosis. Lancet 1997; 349:1379-85

3. Jack Longley, Thomas P. Duffy, Steven Kohn. Continuing Medical Education: The mast cell and mast cell disease. J Am Acad Dermatol 1995;32:545-61

Last update 6th December,2004