Brain Tumors/Anasplastic astrocytoma - inoperable thalamic tumour
How fantastic it is to read your story! A longterm survivor.
I am a mother of a 21 year old girl, who was diagnosed in December 2013 with a large anaplastic astrocytoma grade 3 in her right thalamus region. Because of location it is inoperable.
So she received 30 treatments of radiation, which made the tumour cystic, but smaller and with less activity. Then she received 9 series of temozolomide (temodal?), and in March this year her tumour had shrunk, there was no activity. The MRI showed the tumour just like a grey shadow. So far so good. She was taken off temozolomide, because her blood counts very dropping. Her MRI scan this month unfortunately showed that the tumour is growing and showing activity. This week she started on avastin and lomoustine. I asked her oncologist what to expect from this treatment. She just looked at me and said: not much. Only about 10% respond positively to this treatment. And if she doesn't, we have nothing else to offer. Oh, crap. What do we do then, I asked. She just raised her shoulders and said: I don't know. If she doesn't respond we may search for 2. opinion, but it takes maybe 4 weeks to get an answer. Now, my daughter is feeling fine, she is active - using both her body and mind. Eating healthy food, I think she is doing everthing right. And neurologically she is completely intact. I would like to know what kind of treatment you received, also at which hospital. Do you do anything special in your daily life? I am thinking about if you are on a special diet, doing meditation, exercise etc.? We live in Denmark, but we are willing to travel half way around the world to get at treatment that might not cure her but a least give her some time, - hopefully years! I am thinking M.D. Anderson in Houston fx. But also the hospital in Duke, NC where they try polio-virus to really kick-start the immune system. Any advise or recommendations that you may have, I would be happy to hear. I give all my respect to you for taking time to answering questions on this site. I hope my english is okay and make sense.
Best regards Maibritt
I am happy to answer your very clear question to the best of my ability. As you read in my story I too was malignant and inoperable. At this time I was over weight and smoked, now I am going to ask you a very personal question as it is very important to my story. Do you have any belief in God or a higher power/creator? I ask only because I don't push my beliefs on anyone for any reason but this very relevant to my story. I did not have much if any faith at the time, but my mom did and took me to her church in Penticton BC Canada, the elders laid hands on me and prayed, I felt, what I now know was, the Holy Spirit in my body, what a strange sensation that was, but very calming!
Anyway to the meds chemotherapy was(intravenus) Vincristine a mild plant derived medication and two oral meds Procabazine also known as Natulan, or Matulane, and Lomustine also known as CeeNU or CCNU. Remember your daughter and you can choose another Doctor if you are not happy with who you have. YOU are the boss not them. I fought my fight with stubbornness and lots of support from my parents and friends. My third child was only 9 months old when I was diagnosed, I think I mentioned that in my bio. I really did nothing more than live life, no special diet no special exercise program no vitamins other than what was in my food intake. When my treatment was said and done Me and my family moved to Vancouver island and within months I kicked out my husband found out I was pregnant with my fourth child! I named her Journee, because my life had been such a journey up till that point. Meditation and/or visualization are good I used to visualize little worker bugs going in one ear and coming out the other with chunks and pieces of tumour. My surgery was at the Kelowna General Hospital in Kelowna BC Canada. My treatment was through their cancer clinic they also have a cancer lodge there very near the hospital. The only other thing I can say stay as positive as possible and kick that tumour's butt! Never give up until there is no more breath to give! affirm yourselves daily, carry some with you to remind yourself during the day. make recordings of your own voices saying affirmations and listen to them often. I also refused to listen to the negative outcomes and looked for a better one to focus on. My personal e-mail is firstname.lastname@example.org if you want to contact me that way.. I am also on Facebook.
Just so you know, Maibritt, I thin this is the longest I have ever spent on a reply I truly hope and pray that your daughter will have a wonderful long life, forget what that doctor said about outcome, choose a new ending!
With more respect than you know hugs and love Maryann Carrigan