One patient with glioblastoma still alive nine years later
by redskinsfan69 on Fri Dec 07, 2012 06:28 PM
Hello to all. I have a question. A dear friend of mine found out on Tuesday that she has a Glioma tumor. It's inoperable due to its location near the brain stem. She's an adult female, mid 40's. She is seeing her oncologist today at 3pm. What can she expect? I let her know that I am here for her and will offer whatever support I can. What are some things I can do? Sorry for my vague questions I'm just hoping someone can/will shed some light for me. Thank you so much!
by future2020 on Fri Dec 07, 2012 07:14 PM
Your friend is only 40 or so, and that younger age works in her favor. They will prescribe chemo and radiation to slow down progression of the cancerous cells. While in radiation/chemo, my husband was prescribed Zofran for the nausea. The bi-monthly MRI’s after the daily radiation/chemo ends will monitor the tumor’s progression (if any). After the daily radiation and chemo, Dr’s will most likely put her on a maintenance dosage of 5/23 Temodar.
Get ready to apply for Disability Social Security if (when) it becomes too hard to work. They approved my husband's application the first time, no questions asked. GBM is a terminal disease in the eyes of Social Security. Glimoa near the Brainstem sounds the same. I believe someone on this site mentioned that after a one and one half year on SS Disability, the person then qualifies for Medicare??? I could be wrong.
There are also clinical trials you can look into:
My thoughts and prayers are with you and your friend.
by redskinsfan69 on Fri Dec 07, 2012 08:17 PM
Thank you so very much for the prompt reply. She is in the Oncologist right now. She said she'd call me when finished. They're moving quickly, it seems, as she had the MRI on Tuesday and is already being seen by this doctor. She is a waitress and I'm not sure how good her benefits are, if any. Your links and info are helpful. Thank you! This just sucks.
by redskinsfan69 on Sat Dec 08, 2012 03:19 PM
I heard back from my friend last night. She is "off and running for more tests", but feeling exhausted. She said it's "low grade glioma" but said that it's "on brainstem and messy". I let her know about the disability but she said she is too tired and impatient for applying. I told her that I would help her however I could. If anyone reads this, how can I help her get started? Does she need a lawyer? Does it cost money?
by redskinsfan69 on Sat Dec 08, 2012 06:52 PM
Oh well. Thank you to the person that replied. I am genuinely and sincerely thankful. I suppose since I'm not a caregiver or battling this beast, many are hesitant to help me. I'm just so worried for her and her kids. I'm sad that she is facing this. Very sad. I want to do what I can to help and support her. My brother is also battling cancer, he has a Cutaneous Squamous Cell Carcinoma with Bi Lateral Lymph involvement. He's finished his 3rd round of chemo but he's not very forthcoming with information because he's very private. So... I'm lost and looking for answers. Thanks again.
by tromda on Sat Dec 08, 2012 07:00 PM
On Dec 07, 2012 6:28 PM redskinsfan69 wrote: Hello to all. I have a question. A dear friend of mine found out on Tuesday that she has a Glioma tumor. It's inoperable due to its location near the brain stem. She's an adult female, mid 40's. She is seeing her oncologist today at 3pm. What can she expect? I let her know that I am here for her and will offer whatever support I can. What are some things I can do? Sorry for my vague questions I'm just hoping someone can/will shed some light for me. Thank you so much!
On Dec 07, 2012 6:28 PM redskinsfan69 wrote:
Wishing for the very best possible outcome for your friend.
by brittsmom on Wed Dec 12, 2012 06:25 PM
I also have a friend that had/has a tumor on her brain stem. They did do surgery, removed as much as they could. She is going thru radiation right now, this is week 3. They did tell her that it's a grade 2, and that chemo will not work on this type of tumor? I'm not familiar with this. My daughter is now 26 and has AA3 and has been clean for 1.5yrs now! My friend however, is terrified about what will happen with her. She's trying to stay positive, which is all you can do at this point. Like another poster mentioned, apply for SS. My daughter's was alo approved immediately. Once approved, there is insurance she can then apply for as well. They will base the premium on what your income is. My daughter is very young, and had only worked a couple of year, so not much paid in, so very low $ being paid to her for SS. However, the insurance she got thru them pays everything and so far her premium is 0. It's so worth it! Be sure she talks with her oncology nurses. There are people available thru the hospitals that will help her thru the process as well. I know our nurses were VERY helpful in getting us to the right people. They know how to get things done. She is going to be under so much stress from treatments, etc, that this will be one less burden for her. Also with SS, she can still work and earn up to a certain amount and still keep her benefits. My daughter has been able to work some at a convience store, gets her out of the house and being able to see/talk to people. Something she really needs. Be sure that she gets a second opinion on the surgery as well. My friend here was told that the dr's wouldn't operate either, but she did find one that would. They knew they may not get it all, but he said he would do the best he could. Hopefully the radiation gets the rest. Sorry to ramble, just want to stress what the other poster said, help your friend as much as you can. Do research for agencies that help with expenses, etc. They are out there, and it's a huge help and a huge relief to be able to get some help financially as well. I will pray for your friend as well, it's about all we have, and with my daughter now, I BELIEVE that prayers work! Dr gave her 2 years, and in May her 2 yrs will be up, and there is currently NO sign of the tumor!
by lcarite on Wed Dec 12, 2012 07:10 PM
On Dec 08, 2012 3:19 PM redskinsfan69 wrote: I heard back from my friend last night. She is "off and running for more tests", but feeling exhausted. She said it's "low grade glioma" but said that it's "on brainstem and messy". I let her know about the disability but she said she is too tired and impatient for applying. I told her that I would help her however I could. If anyone reads this, how can I help her get started? Does she need a lawyer? Does it cost money?
On Dec 08, 2012 3:19 PM redskinsfan69 wrote:
My husband was recently approved for SS disability and it was very simple. If you have certain types of cancer you will qualify very easily. Go the the SS website and you can complete/submit the application online. You will also have to send in documents showing you have the qualifying cancer. My husband has EC cancer and I sent the very detailed notes the Radiation Oncologist took and a copy the gastroscopy he had done. He was approved in about 20 days, now the bad news - there is a 5 month waiting period, so he will not get his first check until April 2013. You can help your friend apply if needed.
Hope this helps! Lisa
by redskinsfan69 on Thu Dec 13, 2012 09:09 PM
Thank you both, so much, for your replies. Sorry to know that you both have to see loved ones with this dreaded beast. My friend has gone for the MRI's and Mammo's, etc, to see if the cancer was a met from somewhere else. Yesterday she still didn't have answers but was being referred to a neuro doc, so hopefully this is a step in the right direction. I do plan to help her out with some of this necessary (non health related) steps. I appreciate the information, thank you. I guess it's true, the waiting is the hardest part. Altough, maybe not. Ugh!
by redskinsfan69 on Sat Dec 15, 2012 05:11 PM
Hello again. I received new information from my friend re: the next steps for her. I'll type her words below:
"turns out the tumor cannot be removed or debulked in anyway due to the extremely tight location in my brain. any attempt could kill me or even worse, leave me in a vegetative state. I will be starting radiation 5 days a week for a minimum of 6 weeks, this is to reduce the swelling to make me comfortable and possibly add time to my life. this is not a cure, there is no cure. However there is always hope, there are always miracles and I believe in both. The meds are working ot manage my symptoms. My brain is in overdrive , I can't shut up. I have a million questions and another million decisions to make. It's really quite overwhelming and I just don't know where to start but there is an upside, I'm not alone. There is always someone to hold my hand, pull me through, and love me another day..."
It sounds like she's handling it okay. Almost upbeat. Is this normal? What will radiation be like and what will the side affects be? Thank you in advance for your response.
When you track a discussion, you will get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to track this discussion?
If you stop tracking this discussion, you will no longer get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to stop tracking this discussion?
If you were considering traveling for cancer treatment, which headline would you find more interesting?
Destination: HOPE. Cancer care that is worth the trip.
Over 84% of our patients travel to our hospital from another state
Neither headline is interesting
We care about your feedback. Let us know how we can improve your CancerCompass experience.