Badges (1)

About

Member has chosen to not make this information public.

Groups

Member not yet following any Groups.

Pages

Member not yet following any Pages.

Posts (26)

Sun, May 10 10:37pm · Radiation with or without Temodar for Glioblastoma? in Brain Tumor

My situation was a little different… inoperable left parietal AA3 diagnosed in August 2019. Thirty treatments of proton beam radiation along with 42 does of Temodar. I was told the radiation and chemo was more effective together. After one month, I went on the standard of care of 5 nights of Temodar at a larger dose per month. I am actually beginning the 6 month tomorrow. I have been downgraded from AA3 to molecular GBM. Been suffering from large amounts of swelling and a lot of problems with language, which was the initial symptom one year ago. On top of this, I came down with bilateral pulmonary embolism and dvt, so I'm on lovenox injections for three months. Add on the dexamethasone and I'm a walking blue and black bruise.
Not this helps your question, but always keep asking questions until you are satisfied. Best of luck!

Nov 23, 2019 · Waiting for scan results. Is this part of scanxiety? in Cancer: Managing Symptoms

Not worried about the actual MRI, just the results.

Nov 17, 2019 · Waiting for scan results. Is this part of scanxiety? in Cancer: Managing Symptoms

My first post-treatment MRI is scheduled for 11-25-2019. My 30 proton beam radiation treatments and 42 oral chemo doses ended on 10-28-2019 for grade 3 anaplastic astrocytoma glioma. I'm feeling well, except for fatigue, feeling colder than normal and still not much taste. I've returned back to work, albeit part-time and am hoping to get cleared for full time at the time of my MRI and oncology visits. I'm still on anti-seizure meds and well get a prescription for 5 more doses of Temodar (chemo). I've been trying to stay busy, but the closer my scan date gets, I'm starting to really dread having to go. Any tips to combat the fear and anxiety?

Oct 28, 2019 · High grade Glioma - What questions should I ask? in Brain Tumor

Hello all! Well, it's been a whirlwind lately. I finally was authorized for Proton Beam Therapy and tomorrow marks treatment #30! Tonight is the last dose (#42) of oral chemo! I'm finally going home from Phoenix! Six weeks is a long time to be away from home. Good news, I made it thru the 6 weeks with the help of family and friends. My seizures haven't surfaced in over three weeks either! Lucky the extreme fatigue hadn't hit until this past week. Bad news, I lost a ton of hair from the radiation but I'm assured it'll grow back, but extremely slowly. Taste buds are way off, so food tastes very bland and I'm suffering from a ton of gi gas and reflux. But… that's it! I can deal with that! In two weeks I hope to be back at work, in a light duty capacity. Won't know till several MRIs over the next months and a few more 5 day doses of chemo to see if this treatment plan has worked. I know it's not curative, but more of a controlled plan in hopes of buying myself more time than was outlined in the statistics. Mayo has been great, I'm in several research studies that won't actually help me, per se, but maybe could help others. I'm very appreciative of all the effort that has been extended to myself and my family during this journey. Stay positive, people!

Sep 11, 2019 · High grade Glioma - What questions should I ask? in Brain Tumor

I'm just hoping the insurance authorization comes back in my favor! I hate waiting. Want to get moving forward! Many thanks for the support!

Sep 10, 2019 · High grade Glioma - What questions should I ask? in Brain Tumor

I was in Phoenix. Got worked up for my CT simulation for proton beam radiation therapy, but am waiting for authorization from the insurance. The chemo meds were mailed to my home in NM. Had a post biopsy MRI which shows things as "stable", which is as good as I can hope for. I'll be driving back to Phoenix on Sunday the 15th, with the intention of starting treatment on the intended day of Monday September 16th. Have my Airbnb reserved for six weeks, so I'm anxious about getting this process underway. (Due to the location of the "big ugly", surgery of any kind was not advised).

Aug 31, 2019 · High grade Glioma - What questions should I ask? in Brain Tumor

Thanks so much, Colleen! A wealth of info here!