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Gleevec and nf1

Common Questions and Answers about Gleevec and nf1

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Avatar f tn 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.
Avatar m tn 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.
Avatar m tn Based on your follow-up comment, I guess you are assuming that you have Type 1 neurofibromatosis (NF1) and Mevacor medication can help you...? I don't have any experience with Mevacor (Lovastatin) in my clinical practice, but read some studies about positive effect of Mevacor re verbal and non-verbal LD in children with NF1.
Avatar n tn I was diagnosed with CML in May with WBC at 222 and an enlarged spleen. Currently on Gleevec 400mg and the last FBC shows WBC at 2.1 . Still maintaining current dose of 400mg.Apart from some annoying blisters on my palm, other side effects rather acceptable.
605491 tn?1220127619 hi I also have nf1, and have 2 childern, one who dose have nf1 and one who dose not. i think the chances of passing on to childern when one parents has it 50percent. my mother has it asd my younger brother as it. but my 2 older brothers do not. I too only have a few ltoo only have a few lessions and my daughter as none only cafe spots. but my mom dose have many and is very senitive abut her appearance.
Avatar n tn 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.
Avatar n tn My 7yr old son was diagnosed with NF1. He just had a mri, and they said it is found on kids w this diagnoses and generally goes away on its own. I on the other hand want 2 know more about it and what will happen if it dont. Does it mean surgery? What does it mean 4 his future. It was found on the learning development part of his brain.
Avatar n tn t want to see me, that fever was not from gleevec, and that I needed to monitor myself by myself by simply taken ibuprofen. This is what I did all last week and only this Monday he did a blood work. For now, what can I do to help my body to build my immune system back? Any vitamins? I'll appriciate any advice.
Avatar n tn My daughter has Nuerofribromatousis and doctor saw slight colour during routine eye exam and sent her for mri and results came back something on the brain he could not tell me much as not his area of expertise
Avatar f tn 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.
Avatar m tn 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.
Avatar m tn 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.
Avatar f tn 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.
306245 tn?1244384967 t go around giving advice on NF1 without understand this condition. You can get cancer from tumors and it is not harmless just ask all the children that are losing vision because of tumors of the optic nerve. Be careful before you answer questions about such a serious issue. For acturate information please go to: http://***.
Avatar n tn 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.
Avatar m tn Either way, do Neurofibromatosis type 1 patients have regular check ups and would they have their blood pressure and heart rate taken during these check ups?
20793223 tn?1508280050 I have nf1 I have to deal with it for my rest of my life what can I do to stop the pain
Avatar m tn 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.
Avatar n tn 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.
Avatar n tn I took my 7 year old daughter to the kidney specialist and he said he thinks she has something called cafi. she has little dark marks on her skin. have you ever heard of such a thing ....
Avatar n tn call the facility that did the studies and request copies....and then get a 2nd opinion...this way u have a better idea. Things can get overlooked, especially if they were intent on finding something else.
Avatar m tn 4/7 of them are of size and 6/7 of them are very very faint, all of which are atypical. I went to a derm and she has now checked me twice, she thinks 1-2 of them could be post-inflammatory pigmentation or damaged skin - yet I've never heard of that before. My eyes and all have been checked thoroughly, I have no other symptoms at all. Why do I have these birthmarks - should I let this go or could this be related to something else.
Avatar f tn at first it was just tender and i had blood in my urine and was told it was kidney stones and had a xray but no stones found. full bloods and internal swabs all normal.I had last had an utlra sound of my uterus and kidneys when my youngest was 4months old, that was fine. gradually the pain had progressed to my lower back and right side of my back.. been to my doctors so many times. one doctor said it was my sacroiliac joint. Since then ive had 2 uti's.
Avatar f tn 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.