Krystalbleu

Krystalbleu's Recent CancerCompass Activity

• Krystalbleu has replied to a post on the message board

  Well to all of you with all your great info and input of personal experiences. . . Thank you We just got back from Dana Farber. On my mother's most recent MRI the tumor has stabilized as the Docter said it looks better than stabilized. The Avastin appears to be working. They are continuing the Avastin treatment. The are also continuing the tapering of the steroid. It would be nice if she could get off the steroids ...

  March 24, 2012 view post

• Krystalbleu has replied to a post on the message board

  Very interesting  Thank you for your info.

  March 24, 2012 view post

• Krystalbleu has replied to a post on the message board

  The reality of this disease is to get your affairs in order. Especially with mom in the fact that when the tumor progresses it effects her communication and comprehension. We have done the five wishes, discussed cremation, memorials, I've been added to all of her bank accts ( which I've had to sign her checks at times when she is unable to sign. We also have Hospice palliative care involved. A nurse comes in once a w...

  March 15, 2012 view post

• Krystalbleu has replied to a post on the message board

  Thank you it was shocking that within a week after the first infusion she came out of what seemed like ground zero. Thank you to everyone for there input it is good to hear everyones experiences good and bad - Reality !! Good luck to everyone and please keep posting it's good to connect with all of you who are going through similar situations. Thank you Kristin

  March 15, 2012 view post

• Krystalbleu has replied to a post on the message board

  Thank you Sally I am the one in the scenerio who stays in what I feel is reality my  brother would call it at times being negative.  The night I heard what the diagnose was I knew it was cancer I imediately started researching and advocating. I've told the family from the beginning to just come and enjoy time spent with her. Luckily for her sake during this she has been more positive and in the moment the...

  March 15, 2012 view post

• Krystalbleu has replied to a post on the message board

  Hello I believe the radiation worked for my mom for a few months. I'm not sure if the Temodar with the Radiation and then alone kept the tumor from progressing as well. The steroid has definately been my mom's energy and with the tapering we are seeing some welcome fatigue. Lots of sleepless nights full of cooking, organizing, sewing and recently knitting. Good luck on Friday I know the Dr. always tells us not to...

  March 15, 2012 view post

• Krystalbleu has replied to a post on the message board

  Wow your positive attitude sounds like my mother. She was 61 when she was diagnosed. Through out all of this she says she can only do today and she keeps doing and doing. She appreciates everyone and everything. I feel that her forced retirement has taken the stress out of her life.  Ironically she has always been a healthy vegetarian but the steroid has definately increased her appetite and her cravings for i...

  March 15, 2012 view post

• Krystalbleu has replied to a post on the message board

  I was wondering how long this form of treatment has worked for other patients.

  March 13, 2012 view post

• Krystalbleu has replied to a post on the message board

  So far it seems to be working and she hasn't been fatigued. But I think the steroid is masking any fatigue. So far she has had 3 treatments and her speech and comprehension is starting to improve again. We go back to Dana farber on the 21st to do another MRI. Is is possible the tumor may reduce again. It has been such a roller coaster.

  March 12, 2012 view post

• Krystalbleu has created a new message board discussion

  Hello My mother experienced what seemed like stroke like symptoms in June of 2011. We found out within hours that she had a mass in front left temporal lobe. (Effecting her speech and Comprehension.) So far she had surgery to debulk the tumor. Then Radiation and Temodar. Then Temodar. After 2 months on the Temodar the tumor progressed. So now she is on Avastin.  Most of her side effects she is experiencing rig...

  March 12, 2012 view discussion