In their report, the researchers also discuss the compassionate use of Gleevec in one young neurofibromatosis patient with an airway-compressing plexiform neurofibroma. This patient was not considered an ideal candidate for surgery given the location of the tumor and its vascular nature. A three month administration of the drug was effective in significantly shrinking the tumor without any observed side effects.
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.
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.
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 think my son who is 4 mo. old has neurofibromatosis.....He is starting to show numerous cafe-au-lait spots....not all are the required 5 mm spots but there are many of them...what should I do??? Please help me, I am sick....
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.
Does Neurofibromatosis type 1 cause a high heart rate? I have read that it causes high blood pressure, but does the same apply for heart rate?
I saw the xray and it looks like white circle around the nerve. My nephew has Neurofibromatosis but my sister stated this is not the same. My daughter also has sleep apnea and I was wondering if the pressure from her cpap machine could have caused this. If not could you give me an idea of what could be the cause. We have an MRI scheduled for next Thursday but I am anxious to know what the causes are. I have not been able to find out any info.
Is neurofibromatosis always genetic? I was diagnosed via MRI at age 65. Neither parent ever had any signs or symptoms(via mri,no sin discoleration) I had negativee mri's for several years. I never had
cage ay lait spots. Last year I had mri positive for neurofibromatosis,cervical to lumbar. This year mri shows danger of tethering. These past two years,I developed neurifibromas of my left inner thigh. Could my exposure to heavy spraying of Agent Orange in 1967-69 be a factor?
Does Neurofibromatosis type 1 cause a high heart rate? I have read that it causes high blood pressure, but does the same apply for heart rate?
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.
Gliomas on both nerves is unfortunate and uncommon. Does he have neurofibromatosis? If they are talking about radical surgery that will take what's left of his vision, it doesn't hurt to get a second opinion from a well respected academic center. Unfortunately though, these kind of tumors wrap around the optic nerve and are virtually impossible to remove without sacrificing the nerve. Most grow slowly though and are not removed unless threatening other vital structures.
Hi There I need to give you a little history first. I have this disease called NEUROFIBROMATOSIS. my now 6 year ols has the Cafe au lait marks like 6 or 7 of them but don't measure up. he has has a cardiac history. ASD, large VSD, pulmonary stenosis, pectus EX (not sure if he was born with it or if it is due to his surgery) he is only in the 20% for height and 30% for weight. he had to get PT because he was developmentally slow. he has large eyes, smart, and so on.
Is there any link between neurofibromatosis and mirgraines? I've been getting them every since I had my craniofacial operation when I was 17. I am now 31 and sometimes they get real bad. I have a few neurofibromas along my scalp that I can feel whenever I comb my hair, and was just curious.
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.
The lumps which come on and off could be neurofibromas. “Neurofibromatosis is a genetically-inherited disease in which nerve tissue grows tumors (e.g. neurofibromas) that may be harmless or may cause serious damage by compressing nerves and other tissues.” Refer: http://en.wikipedia.org/wiki/Neurofibromatosis
Hope this helps. I think you should discuss this possibility with your doctor. It is difficult to comment beyond this without examining.
I have pain and aching in my face. I have neurofibromatosis. Can the pain be caused by the disease.
What can be causing the pain and how csan I approach my doctor. I have mentioned it several times and he seems to take it lightly.
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