All of my life I have been experiencing problems when it comes to listening . I am pretty sure I have a listening learning disability. Will me actor help me it says it's the cure for nf1 and what kind of doctor do I go to to get these type of medications.
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.
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.
I have NF1 with several fibromas under my ribs which have become more painful over the last few years some days a 9-10 on the pain scale. I had a neurologist that prescribed Lidoderm patches topical 12 hours on 12 off that were effective. I have new health insurance that won't cover the patches. I went to a new pain management doc that prescribed a cream that works quite well.
Am on Gleevec 400mg, now having problems with blisters on the palm. What can I do about it?
I think you are a normal mom concerned for her child ,why did they do a check of eye nerve damage was that because of the head aches what did they say ?
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.
I went to UCLA medical center to see a NF specialist. We thought what was on my spine was a NF's and was shock with my diagnosis. The Neurologist I'm seeing now does specialize in Thoracic spine pseudoomengocele and Chiari malfunction. Everything I'm reading about the surgery sounds scary. My doctor said we just have to wait for my symptoms to get worse, because their will be multiple surgerys. The cure sounds worse than that Disease.
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.
I knew I had two cafe spots on my shoulder and arm growing up but recently shaved my legs for sport and realised I have another two, does this indicate anything bad? I know NF1 developes as a child and I have no symptoms whatsoever, but I’m extremely worried as of now.
Hi, according to studies done, in patients with Neurofibromatosis type 1 had excess of arrhythmias. There were, however, fewer cases with episodes of bradycardia among the NF1 patients than among the controls. This might be explained by vagus nerve involvement. Regards.
These disorders cause tumors to grow on nerves and produce other abnormalities such as skin changes and bone deformities. Treatments for both NF1 and NF2 are presently aimed at controlling symptoms. Surgery can help some NF1 bone malformations and remove painful or disfiguring tumors> But there is a chance that the tumors may grow back and in greater numbers. Surgery, radiation, or chemotherapy may be done.
Consider post contrast images for complete evaluation as well as short-term imaging follow-up dependingon the clinical presentation....There are no definate signal abnormalities with in the corpus-collosum or inthe posterior fossa.
I am 42 years old and female.
How are you? How is your daughter? Cafe au lait spots are pigmented birthmarks that may vary in color from light brown to dark brown. The borders may be smooth or irregular.The size and number of CAL skin lesions widely vary, and they are usually the earliest manifestations of neurofibromatosis. This link may be of help: http://en.wikipedia.org/wiki/Caf%C3%A9_au_lait_spot
Take care and keep us posted.
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.
ve mentioned this before, but in addition to MS I have another neurological disorder (neurofibromatosis, type 1, or NF1) and degenerative disk disease.
The major problem with NF1 is that tumor-like growths, of various sizes, can grow anywhere in the CNS. It has been known for some time that I have some small ones in, what I am told, are “non-strategic” areas of my brain, and several of various sizes growing along the length of my spinal cord.
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