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


Do you have a question? Feel free to ask here!

I figured I would try something different, if you have a question you need answered just post it here and I'll do my best to answer it. Also if another reader knows the answer please feel free to jump in and help.

Wednesday, July 22, 2009

I’ve been contemplating something and need some advice!

I’ve been debating if I should try and drink a margarita or sip some wine. I know it sounds crazy, I’ve never been a drinker so don’t get the wrong idea. I’ve been 13 years without a sip of alcohol sometimes I just wish I could have a nice glass of white or red wine with my wife at a nice candle lit dinner. I wanted to know how many people with Systemic Mastocytosis are still able to consume alcohol. If I try I will have my shots handy and only take a small sip. You are probably thinking is this guy crazy?

Sometimes I get so pissed at all the things I’m not able to do anymore.

My Visit to M.D. Anderson | Another Bone Marrow Biopsy & Aspiration

In case you did not know I’ve been participating in a research study at The University of Texas M.D. Anderson Cancer Center for over 3 years now, My Doctor is Dr. Srdan Verstovsek he’s been a key speaker at many of our past annual meetings.

2005 Annual Meeting - Dr. Srdan Verstovsek “Latest Treatments for Mastocytosis”
2006 Annual Meeting - Dr. Srdan Verstovsek — “Recent and Ongoing Studies for Systemic Mastocytosis”
2007 Annual Meeting - Dr. Srdan Verstovsek — “An Update on New Therapies for Systemic Mastocytosis”
2008 Annual Meeting - Dr. Srdan Verstovsek – “An update on new therapies for Systemic Mastocytosis”

I’ve been taking the Dasatinib (chemo pills) for a little over 3 years now. When I first started the clinical research study I was very sick. I was going into anaphylactic shock on a regular basis, the first time Dr. V (Dr. Verstovsek is known by many of his patients as Dr.V.) called me I did not wish to enter the study so I declined. A couple of months had went by and I had a severe Masto reaction to something I had eaten followed by a severe case of anaphylactic shock, I was also told I almost did not survive after waking up in ICU. When I was released from the hospital I immediately called Dr. V., I asked if I could still be included in the study? He of course said yes. Now understand this is NO cure but since I’ve been on the Dasatinib I have not been hospitalized, I’ve had some close calls. I still carry my shots and take all the required precautions, watching what I eat, staying away from strong odors, avoiding to much heat if possible and I still pay my friends son to cut my yard, these are only a few triggers I avoid. For the most part though the Dasatinib has been very helpful and I’ll continue to take my current protocol. I currently take 40mg of Dasatinib twice daily, 150mg Zantac 2 to 3 times daily and 1mg Xanax as needed. My protocol prior to the clinical study: Doxipin 10mg AM, Doxipin 25mg PM, Benadryl 25mg daily, Prednisone 5mg daily, Zanatac 150mg, Xanax 1mg as needed and Benadryl high potency shots 50ml as required. I’ve taken just about every drug known for Mastocytosis over the past 13 years. The current protocol I’m currently taking has been the best by far.

One of the drawbacks to being on this study is every time I go in for my checkup and to pickup new medication I have to undergo a new Bone Marrow Biopsy and Aspiration. I was trying to count for you how many of these procedures I’ve had done and to be honest I’ve lost count, I’m pretty sure it’s around 14. Now realize these people that do the biopsy specialize in just that, seriously they do a great deal of these every day probably over a 100. What I’m trying to say is it’s no backwoods hospital that may do a total of 1 biopsy a month. I’ll share more about the biopsy in a moment.

I wanted to share with everyone a couple of photos of the people I have entrusted with my well being. The first photo is of Dr. Verstovsek and his PA. (She was new and I cannot remember her name). Dr. V. has been great not only does he take my calls If I have a question he takes the time to answer my email. Even though he is very busy when I go to see him for my regular checkups I do my best to make him laugh or smile at least once before I leave. I’m very lucky to have him as one of my Doctors.

This lady here is Kay she was the research nurse for the study for a long time, she made sure I received my clinical meds along with making sure I turned in my pill diary. Kay told me something once, she said usually the ones who are starting to feel better get relaxed and don’t turn in their paperwork anymore. Needless to say she had to stay on top of me about my journals. I have to keep a day to day journal of when I take my Dasatinib in the morning and evening. Kay has become a very close friend even though she is no longer the research nurse she still works at the same clinic I go to for my checkups. Here is a photo of Kay and me.

I was excited to show Dr. V. my blog yesterday while in his clinic. He was also very excited to see me writing about my life occurrences while living with SM. He agrees having a positive outlook is always important.

I wanted to share a real detailed experience for those who have never had a Bone Marrow Biopsy and Aspiration by sharing detailed photo’s of the whole procedure but was not permitted to take pictures even though it was of me. Instead I’m going to describe as best I can how it went. Now remember everyone is different and everyone handles pain differently so what works for me may not work for you.

I took two 1mg Xanax about 30 minutes prior to my Bone Marrow Biopsy and Aspiration, this helps with the anxiety we tend to stress about the procedure so much beforehand causing ourselves to have complications before we even begin. I’m now able to use some type of lidocaine to deaden the area before they begin the procedure. I have my shots lying next to me in case I have a problem. Once the area is very numb they began the procedure. I’ve found that laying flat on my stomach and resting my chin on a pillow while using my hands to grip the sides of the head rest helps with the discomfort. You should only feel pressure when they begin to push down into your hip (bone marrow). Once they begin to pull the sample I feel a very sharp pain. Now the better your bone marrow is the more this will hurt. I was told the reason it may hurt more than other times is because our marrow has more good cells. When they begin the Aspiration I always ask them to pull it out slowly, not too fast. For me when they pull it fast it is more painful then when they pull it slowly.

13 years ago when I had my first Bone Marrow Biopsy and Aspiration I was unable to use anything to help with pain or discomfort, they had to do the procedure while I was on an epi drip and admitted in the hospital.

I almost forgot to tell you, when I first started the study I had to come back every month then it was every 3 months, 6 months and now I only have to come back once a year. I’m one of only a couple still having success with the drug, when I say success I mean I’m not going into shock left and right like before. Dr. V. did tell me they are starting some new studies and he would keep me updated on how that progresses.

If you have any questions regarding the above feel free to ask and I’ll do my best to answer.

Sunday, July 19, 2009

Small Update / New LQQK

I’ll be heading to The University Of Texas MD Anderson Cancer Center for more bone marrow biopsies and aspirations Tuesday the 21st. I have these done every six months to evaluate my masto while taking the Dasatinib chemo pills. I don’t know about the rest of you but I dread having this procedure done.

I’m sorry I’ve not posted my pictures from my trip to Oklahoma. I’ve been very busy and very tired of late. We had a great time, the trip was very hot. My wife kept spraying cold water on my neck to keep me cool. We also stopped about every 100 miles to rest. I will still be posting some pictures time permitting really soon.

I’ve almost gone into shock twice, once on Friday and Saturday. I’ll share more about what happened in my next post. I’m doing OK but I’m on guard more so than I’ve been in awhile.

My middle daughter turned 14 today it’s hard to believe how fast my girls are growing.

NEW LQQK: So how do you like the new look of my blog? Let me know I would love to hear from you!

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.


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.


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.


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


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.


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