Hi there.
It is important to be empathic, and let your brother know that you are always there for him. However, you should not overdo this, since this might lower your brother's self esteem further and cause him to have self-pity. CML is a manageable disease given the appropriate medications. Not all CML's are candidate for Gleevec. Only those who tested positive for the philadelphia chromosome or the bcr-abl gene would be candidates to receive gleevec.
Did a biopsy of rash on belly.Still waiting for results. He said it may or may not be Mastocytosis but I definitely have too much histamine. I'm up to 4-10mg of Atarax a day so I can function again. Still having flares though so we'll add a pill a week until we find the right dosage. So my question is what else could cause too much histamine. I'd like to take something else back to the doc since they seem to be at a loss if not Mastocytosis.
Hi, I don't know the answer -- but since both CML and Gleevec toxicity produce anemia because of marrow suppression, maybe it's not possible to tell the difference. E.g., both would show a low reticulocyte count.
This full text paper on anemia from Gleevec https://onlinelibrary.wiley.com/doi/full/10.1002/ajh.23879 shows that other signs such as red blood cell size can vary, so that doesn't seem to help. Sorry.
I was diagnosed with CML and given Gleevec 400 ml. After taking gleevec for 2 weeks doctor took additional blood test. My WBC dropped from 36.5 to 7.1 and all other blood counts came down to normal range. I'm wondering if gleevec could give such fast hematological response or I was possibly misdiagnosed originally. I don't and didn't have any symptoms, my spleen and liver weren't enlarged, no enlarged lymph. Should I get second opinion asap? Please, help me.
Hi.
Response to imatinib (gleevec) can be dramatic just like what you experienced. Myelosuppression with neutropenia (decrease in neutrophils) and thrombocytopenia (decrease in platelet count) can be a side effect of treatment. Usually, discontinuation of drug intake is advised until the blood counts increase. You should have your white blood cell count repeated after 1-2 weeks and see if it already improves. You should report to your doctor if you experience any symptoms like fever.
Did a biopsy of rash on belly.Still waiting for results. He said it may or may not be Mastocytosis but I definitely have too much histamine. I'm up to 4-10mg of Atarax a day so I can function again. Still having flares on 3 so we'll add a pill a week until we find the right dosage. So my question is what else could cause too much histamine and all those problems. I'd like to take something else back to the doc since they seem to be at a loss if not Mastocytosis.
Am on Gleevec 400mg, now having problems with blisters on the palm. What can I do about it?
However when i moved from Atlanta they insisted on a bone biopsy that said no to Mastocytosis. All my Atlanta drs said Mastocytosis explained everything including my reoccurring pericarditis. So if its not Mastocytosis, what is it. They offered nothing here in Chattanooga, so I dont know what is wrong with me.
I was diagnosed last year and was immediatley put on gleevec 400mg/day.At my last consult my metabolic stats had risen,hence blood tests to determine if the gleevec is no longer working.I am still in firstphase and wonder what my options are if the gleevec is no longer an option.Amin pretty good form,just very tired and a lot of bone pain.
dear doctor, can you please tell where we can treat Mastocytosis, the baby was born with it and it's 2 months old now, he was born with swollen liver and spleen and he was treated only after a month with antihistamine, we are in Macedonia.
I have CML and was treated with Gleevec for 4 years and achieved remission. I have for the past several months been experiencing sudden onset of weakness which last for hours, to days. My blood pressure which has remained under control for several years with atenolol has been running 145/105 and higher for the past three to four months. I have a feeling of fullness in my stomach, and I have sporatic episodes of mild coughing, this occurs maybe once a week.
Because of my symptoms he has scheduled me to have a bone marrow biopsy to look at gene mutations to check for MPN disorder or check for Mastocytosis. I got to thinking after I got home if I have an MPN disorder or Mastocytosis wouldn’t shonething show up in my blood work? Or is bone marrow biopsy sometimes the only way to diagnose it?
Mpox is not only transmitted by touching, but is also transmitted by respiratory droplets. If the children in your life are immunocompromised, wearing a mask would help.
Have you googled symptoms of mpox? You can avoid contact with anyone who has a rash, but people are contagious 1-4 days prior to symptoms.
Honestly, I'm not sure why you've latched onto mpox.
A lot of people with dysauto also have allergies, but then again a lot of people in the general population have allergies so I don't know if any statistically significant correlation has ever been found. Searching Pubmed and Google scholar right now, I don't see any articles about allergies in dysautonomia unless I'm missing something.
I'm not sure if that could possibly point to MCAD/mastocytosis or not. Does anyone know if masto is ever triggered by traditional allergens?
My daughter has Mastocytosis, was a hair stylist for over 20 years, all the chemicals she breathed in has caused her to be allergic to almost everything.
If you breathe it...you eat it.. it's in your body.
Occassionally it flares up and becomes red and raised but presents no discomfort and as such has not been a cause of concern for me as I understand that it will hopefully disappear over time.
She has had a few outbreaks of hives though. This covers most of her body but is wrost on the back of her legs and buttocks as well as on her arms. She is 3 yeras old and has had about 4 or 5 outbreaks.
i was diagnosed with cml in march of 2009 and was also taking 150mg of elavil at bedtime to control migraines for like 10 years. then this past dec. a heart test showed i had prolonged qt of the heart so i was stopped 'cold turkey' by a dr and its been down hill ever since. i have had the shakes, loss of appetite and constant nausea. i wake up evey morning shaky really bad.
I have no idea how your question has come to be on the Mastocytosis Board but, I'm not sure if you have something serious or not. Contact your doctor and go in and get a check-up and let her/him know what is going on and see what their thoughts are. Good luck!
January 2012 - while vacationing at the beach had a big lump appear on the bottoms of each foot. It was hard, painful and itchy. At the time I was taking 2 anti-biotics for a bladder infection. I didn't not pay any attention to food or anything I consumed. I thought it may have been a reaction to the sand or something there.
Jan. 2012 - a week later I broke out in hives all over my body and felt my throat tightening.
Hello,
I am sorry that you are experiencing these symptoms. I know it can be frustrating and downright scary when no one seems to have an answer. I am responding because I too suffer from extreme fatigue/sleepiness, neck pain, memory loss, fogginess, inability to handle stress and can't handle too much stimulus. I take Hemocyte-plus for anemia and Synthroid for hypothyroidism. I have recently been diagnosed with systemic mastocytosis.
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