Fusionera

Hi Fusionera, Thank you for following me! I don’t know where I’m going most of the time, but somehow I manage. And I love your cat! What a cute photo! Hugs!

I was told at my radiation oncologist follow up that my chemo oncologist may switch me from temodar to avastin. I knew I heard a negative effect about avastin and I remembered you had said it has a high stroke risk to it. Now I will be talking more to my doctors. That really scares me. My cyber knife post mri is being scheduled soon. I await to see if the chemo oncologist will wait as well for results before deciding to change chemo meds. I've done so well with temodar I hope he will not switch me. have a great day keep positive...

Thank you for answering my question of hair loss with cyber knife. I appreciate it. I am on chemo pills and know that hair los occurs from that as well. I have a little bare spot above my ear again hair had grown back. Could be from sleeping on that side as well. I see the radiation and chemotherapy oncologists next week and will ask thEN. was cyber knife effective for you? I have not had the follow up mri as of yet. Dr wants any brain swelling gone. Ive had bursts of energy since cyber knife no fatigue. I feel great. Thank you again. I'm just new to this wesite and learning as I go. My best to you.

SO sorry about your misfortune, Fusionera!! Heal well!! Stay hydrated! My bad; I didn't and healing slowed, as a result!!

Again, dittos of thanks as with Lilly. I thought Medicare you had to be 65, but I'm glad to hear that it may be available before then should it be necessary. It's nice to meet people who've traveled this unfamiliar path, that nobody chose. My friend is helping me with steps as her battle is even more severe. Thanks for the tips. Kind thoughts returned.

Glad it was not bad. You are a wonderful inspiration to all of us. So many turns in your journey and never giving up. Love and hugs. God is with you.

Thanks for your post earlier. I have oligoastrocytoma stage 2.this coming Friday 30 I go to my oncologist to see what my treatment plan will be. So nervous.i read your story and it is nice to meet others that are going through what I am. I have a wonderful family but it makes a world of difference to know people who are going through it as well.

Welcome to the WhatNext family. I am an oncology nurse and I am always available to answer any questions you may have. There are many here with similar circumstances willing to share their experiences with you. Best of luck to you, Carm RN.

I saw your profile/story on the latest What Next update in my email ... and I've read all about you on here. It is amazing to me how similar our stories are. I was diagnosed 11 years ago with an Oligodendroglioma in my right frontal lobe and have had 2 crainiotomies (2002 and 2006, Temodar, PVC, and Avistan as well as gamma-knife radiation). Lots of MRI's here too ... I've not been as thorough as you and counted them though. When I first signed on to What Next, I did not see as many others in my situation, but I would like to get to know you better and maybe share some more of our stories. My email is relaymama@gmail.com if you'd like to message me.

God Bless,
Sharon

Just wanted to say hi! I have been newly diagnosed, with one pathologist calling it astrocytoma, and one thinking it might be an oligo, but reading your page here gives me so much hope!!! We will know soon which kind of tumor and I will probably start radiation and chemo soon (still recovering from surgery three weeks ago). Thank you for posting on here!!

Thank you so much for sharing your journey. It gives us so much hope. Keep up the fight!!!

Thank you so much for sharing your experience. I wish you all the best for the future and for your book! let us know when its published!

Thank you for sharing your story. Eighteen years is a long journey for sure, but by sharing your experience you give hope to countless other brain tumor survivors. I am a 4x cancer survivor. 2x systemic NHL and 2x CNS (brain) Lymphoma over 14 years. Very sorry to hear that you have gone through so much, but happy to hear about your strength.

Hi; Your story is a commentary on the resilience of human kind. This is a long freaking time to be sick but, as is obvious, better sick than dead. Even better is well.

You appear to be very bright. You've been repeating activity with the same results for nearly half of your life at this point. Even better is well. You are also educated in things which I am not (like computer basic software). Would you be interested in trying something radical which can both do no harm and (check with your doctor once I explain) not interfere with your current treatments?

Also, if you aren't working at current, I can offer you a small job as an editor/layout person for a book I wrote. The software is mostly unknown to me (WORd) and it is taking me longer to format the thing than it did to write it.

I'm a great believer in using food as medicine. Nothing formal, of course but I do believe that the food we eat is one fourth of the key to excellent health.

Enjoy your evening. I'm glad you are around.

Read Fusionera's story on our blog here>>https://www.whatnext.com/blog/posts/how-to-beat-brain-cancer-6-times-in-18-years-fusionera-s-story

Your WhatNexter of the Week article you gave me a month or so ago will be featured in our Newsletter this week. Just FYI

hi i havent had the best of times ritenow my tumor is dormant im havin overdraining issues ritenow i hope all works out for u. i cant remember alot but after my 3rd surgery i was really sick all year in the hospital 17 times then i had radiation n my tumor came back grade 1 had 4th surgery at age 17 they got 99% of it

Hi - thanks for writing on my wall. Is your tumor still there? I still have a small pieice because it's in my speech area so the surgeon couldn't remove iit all with the technology back in 1999. It hasn't changed in over 13 years. Still going for MRIs every 6 months. Are you on seizure meds? I am on Neurontin and Keppra. The Keppra is making my hair fall out, so I wear a wig to work. Are you currently working? I am working over 40 hours a week. I am very curious how you are doing and what I can possibly expect. Thanks again. I look forward to hearing from you.

Thank you, Fusionera, for sharing your story. I'm recovery from breast cancer and all these reconstruction surgery issues have really got me down in this past couple of weeks. Your story inspires me.. fight sweetie, you have so much more to do with your beautiful life and we need to hear your messages!

Fight the fight! Wishing you good thoughts & great strength!
Best to your future book!

I saw your story on Facebook. You give me renewed hope. I was first diagnosed with an anaphylactic astrocytoma in 2003 at the age of 29, had surgery, radiation and Temodar and then was in remission for 9 years. I had a recurrence in 2012 had another surgery that left me partially paralyzed on my left side, more radiation, a clinical trial, and now I'm also on Avastin every two weeks. My tumor shrunk after the first few rounds but was stable at my last scan. I'll have another in January.

Thank you for sharing your journey. Very inspiring and gives me even more hope. God bless you.

Hello,
I am an oncology/end of life nurse. Welcome to the “What Next” family. If you should have any questions or concerns that you feel that I might be able to help you with, please do not hesitate to ask. There are many excellent people here always willing to help in any way with the latest information or experiences to share. You are among friends….there are no strangers here. I hope you find all the information and support you seek, Carm RN.

I am amazed reading your journey sorry you are back in treatment. Thanks for being a Temador Queen the research has helped many of us. I am 53 and was diagnosed 20 months ago.

Hi Fusionera. Just wanted to get in touch. Looks like you have had a time with all your treatment and you are such a beautiful girl. I am new to this and have had my 3rd radiation treatment today. So far so good. Misdiagnosed for about 8 months and finally biopsy showed atypical aggressive malignant meningioma. If there is anything or any information you could share with me I would so appreciate it. I have been having good days and some not so good. One thing I can say for sure. This is a hidden blessing in a horrible disguise because every day is sooo beautiful and wonderful. Life IS good!!! Your friend.