complete loss of NF1 in Schwann cells (rendering them NF1 -/-) and an interaction between NF1 -/- Schwann cells and NF1+/- mast cells. While Schwann cells appear to be the primary tumor causing cell, mast cells appear to stimulate tumor growth by recruiting other cell types and blood vessels to the tumor.
"The mast cell inflammatory response appears to be co-opted by the tumor to enhance tumor growth," says Dr. Parada.
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.
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.
Is it possible that after taking gleevec for only two weeks WBC droped from 36.7 to 7? All other blood counts are also came back to normal range. Could doctor make mistake in diagnosis of CML? Maybe I should get seg second opinion?
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.
In your tags you put NF1 which is neurofibromatosis (I have a nephew with this) - do you have this diagnosis?
White matter is... ambiguous. Your neurologist needs to do more testing to give you more of an idea. This is better posted under the neurology forum than here as well.
After two weeks on 400mlg gleevec my WBC droped from 36.5 to 7.1. My doctor told to come for additional test in two weeks. Now my WBC is 1.3 and absolute neutrophils count is 0.04. I was told to stay home on antibiotics. How long it may take for my counts to clime back to safe range. And of course, I'm off gleevec right now. Does it seem that dose of 400mlg is too high for me.
Am on Gleevec 400mg, now having problems with blisters on the palm. What can I do about it?
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 was just diagnosed with Thoracic spine pseudomeningocele and Chiari malformation. I also have scoliosis and NF1. I started having headache 4/16 and they only got worse. I didn't go to the doctors until I felt so much pressure on my eyes, ears and the back of head when I coughed. It felt like I was going to die. I had a MRI done on a unrelated issue and the image showed something on T8 of my spine. Since I have NF1 that's what we thought it was.
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.
You might find he starts to be able to tolerate the pill. Gleevec is first choice for treating CML, and if he is doing good in every other way then encourage him that he is doing great.
I hope this helps you. I would be glad to help you with any other questions.
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.
I cannot get a straight answer from anyone other than to quit smoking...which I am working on. I also have NF1. Now...where do I go from here. Is my passing out connectied to this demyelination? Is the NF connected to it. What kind of questions do I need to be asking? Sorry about it being so long...but better too much information than not enough. I am suspecting MS...but as I said, everyone seems resistant in giving me some kind of idea of what is happening to me.
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.
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.
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 get my heart checked every 2 weeks now and i am fine with the qt thing. i take the chemo pill called gleevec and have to force myself to eat so i dont get sick when i take it. how long will these withdrawel problems go on? i have xanax to take (1mg) but dont work to good. i should would appreciate any advice from any one on how to deal with these issues, family dr says its anxiety but i think its the withdrawels from the high dose of elavil.
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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