Are You A Glioblastoma Survivor?
Donna's recovery has been nothing short of an amazing miracle! If you are a survivor, I'm sure that you have had many of the same experiences as Donna has.
When Donna was first diagnosed, the tumor was first resected (removed), then followed with 33 rounds of radiation, and is currently on Temodar in 6-week intervals. Since the time of her operation on August 28, 2000 until now, she has had clear MRIs. When Donna visits with her oncologist and her neurologists, they just shake their heads in amazement!
However, with this situation comes a dilemma. Perhaps you are in the same dilemma. The doctors tell us that Glioblastomas almost always come back. And when they do, their growth can be very fast.
Therefore, the question facing us is: Should Donna stay on the Temodar chemotherapy? And if so, for how long?
Why do we ask? The concern is if Donna comes off of the Temodar, will the tumor reappear?
We do not know the following:
Did the surgeon get all of the malignant cells?
If he did not, did the radiation kill off any remaining malignant cells?
If the radiation did not kill off any remaining malignant
cells, did the Temodar?
Is the Temodar keeping any malignant cells in check,
or are they all gone?
Is there a point after taking Temodar that one can
reach and know that a tumor will not re-grow?
In a nutshell, we do not know how long Donna should continue on the Temodar. It is a problem that we are searching and praying for an answer to.
That is why we are asking for your help. Please send us your story. Ideally, we can compare notes and perhaps we can develop a strategy.
We are not doctors! However, the doctors are in uncharted waters when dealing with Glioblastoma survivors. They sincerely do not know what to do - and we understand that!
Our goal is to share survivor stories with other survivors to give them input to help lead them to an informed decision as to whether they should continue taking Temodar or not. These stories are posted on this site on the Survivor's Stories Page.
We appreciate you helping us. If you do not want you story
posted on this site, but you do want to share it with us, we will honor your
request for confidentially.
Please email your story by clicking here. I will send you a reply of thanks!