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Ubsueg's Message Board Messages

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RE: ATM gene mutation

by Ubsueg - April 20, 2018

Thank you for you insight. I had not thought about future generations. I will make sure all famiy members who are possibly affected by this mutation know that they must be tested.

ATM gene mutation

by Ubsueg - April 19, 2018

Just learned that I have this mutation after genetic testing due to multiple siblings with rare type cancers. Doctors don’t have much information on this mutation...one saying it’s not a big deal but it is concerning... Maybe someone can shed some light on this for me in language I can understand. Thanks in advance
Thank you all for your caring words and advice. Only those affected by this understand....
Please tell me your experiences with hospice pros and cons.. How did you know it is time.. How hard was it to make the decision.. GBM 8/11

On Oct 31, 2012 2:49 PM dadsglio wrote:

My dad was diagnosed on Aug. 9th with GBM. He seemed to respond well to radiation and 100 mg of temodar and rehab. He had left side weakness due to the are of the brain the tumor affected.  He finished all treatment Oct. 10 but continued rehab. Now he has been in the ICU for 11 days, 10 on a ventilator due to possible PCP (pneumocystic?? sp?), a pneumonia related to temodar. He also has blood clots in his lungs and legs. Can't have blood thinners as they don't want to make the tumor bleed.  Has anyone else had these complications? We are devistated as he was doing so well. The next MRI was supposed to be late next week. We might not make it to then. Sigh.

My brother also suffered blood clots that went undiagnosed and end up with a big saddle pulmonary emboli. He was treated with heparin while in the hospital and is now being discharged with lovinox blood thinners. He has GBM also but if they didnot treat him he would die. They put a vena cava filter in while in the hospital to reduce the risk of further clots. He is on avastin and now there is double risk of bleeding due to the anticoagulation. We are taking one step at a time. He was on a prophylactic dose of bactrim to prevent pcp while on the temodar but ended up with high fevers in the past that was diagnosed as aseptic meningitis. That was treated with IV antibiotics and cleared. He has been through so much. He is only 59 but his body is strong. I understand where you are right now. This has been a very very difficult 14 months.
Please make sure he doesnot have a blood clot in his leg. It happened to my brother with GBM. Lots of swelling vague leg cramping, unable to walk easily. Doctor dismissed the swelling saying he is not concerned. He ended up with major pulmonary emboli that almost killed him. Insist on a Doppler of his legs. Brain tumor patients are prone to blood clotting..
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