One patient with glioblastoma still alive nine years later
by nenid on Tue Jul 12, 2011 05:46 AM
My grandfather is a strong, healthy man with some borderline hypertension. As of June 17, 2011, he is a AML with poor cytogenics patient and has been the recipient of three recent platelet transfusions and about 5 blood transfusions due to low hemaglobin. According to his doctor, there is no treatment available, just supportive care. He's in Ontario. If there is anyone with any recommendations or suggestions, please respond. We are desperate to help him.
by buttercup64 on Mon Nov 14, 2011 10:37 PM
I dont have advice, but a sympathetic ear. my mother has been fighting a primary interperiatenial cancer for five years (closest related cancer ovarian) and last February she received a secondary diagnosis if AML. They doctors ahve fought htis with Vidaza since then, but her blood just does not make platelets, nuetrofils, or or other blood components without transfusions. She is at this point having platelets and 2 units of whole blood every week. As if this were not enough she has developed a severe heart issue. It is so hard to watch our loveds ones go through suffering. I am just trying to let you know, I understand what you may be feeling, and give you support from afar. Take heart, originally they told us mom only had a month to live, that was last February as I said. There are new meds they come out with often, and we are praying for miracles for the individuals and families. I understand this has all been supportive care for mom, but I am grateful for every day I have with her, as I never expected this many more. Take care, and I will pray for your grandfather.
by pborn on Tue Nov 15, 2011 01:39 AM
Thx so much. Godspeed to your Mother. Have to know if her time, is God's will. HE brings us, HE takes us. When that age-is close-no matter what happens. Can just encourage one another-faith and prayer is all we have. We WILL see them again.
by buttercup64 on Tue Nov 15, 2011 08:58 PM
I am so glad to make contact with another believer, I asked God for this. I know eventually He calls us back to Him, and when this happens, she will be home. Thanks again, my prayers will be covering you and your family.
by bwightma on Wed Dec 05, 2012 12:40 AM
On Nov 15, 2011 8:58 PM buttercup64 wrote: I am so glad to make contact with another believer, I asked God for this. I know eventually He calls us back to Him, and when this happens, she will be home. Thanks again, my prayers will be covering you and your family.
On Nov 15, 2011 8:58 PM buttercup64 wrote:
My Dad is 83 now and was diagnosed three months ago with CMML which was re-diagnosed as chronic AML. He goes through a 28 day cycle of 5 days of IV Vidaza and 5 days of oral Revlimid then a reprieve for 18 days. After the tenth day of meds and for the next five he is running on will power only. His treatment is out of M.D. Anderson in Houston. Platelets and other blood components are better than with no treatment (they were falling fast). With treatment (to remove the blasts) there is some leveling out of red blood cells and platelets. Platelets jump around a lot and he has had transfusions. Day by day we go. Other than that, good food, some walking and lots of rests and naps. Doctors do not like confounding supplements or active patient research/meddling, so you have to eat very healthy as a workaround.
Your faith, resolve, and perseverance is your strength, whatever form it may take. God be with you.
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