What to do when an MRI is stable -update on my sister- and some rambling thoughts

I_Promise said:

Illusions
Dear all,

Jane, I always read your post because I I know how much you have read about clinical trials. Please continue to post your information and how your husband is doing. I want him to do stellar and beat this monster.

Cindy, please continue to post; your love and courage never fails David. I am with you in spirit. I want David to recover some strength, and he will. I am glad that he feels that he can be honest with you and tell you his fears and state of mind. His tumor is shrinking. The infection will resolve. He will get some muscle mass back. He was an athlete.

And to all, regarding clinical trials it is tough, yes, but I do believe there is more than one way to kill cancer; some are more effective; some have more side effect. An NO at Hopkins once told me: you can only take the best decision with the information that you have at that time.
Yes the phase 1 are all about toxicity and safety; but at least the clinical trials exist. At least we have some treatment options. And I want my sister to be as healthy as possible for such a trial.

I remember talking to my sister with a stern voice telling her to go outside and jog. Yes, she was weak from the chemo, the keppra, the radiation, the surgeries, some depression?, but I did not care. I pushed her to do something. Walk to the post office. Get out of bed and go to the coffee shop. You would think she would hate me talking to her like that. But no, she would listen, cry a bit, and then put her shoes on. Now we are over the hump. She is hardly home now, busy with her life.

I think that in terms of numbers, most of the trials are for recurrent GBM, then it is for GBM, then recurrent disease gliomas, then newly diagnosed anaplastic gliomas, then a few for newly diagnosed grade 2. So from the worse prognosis to the best. So Cindy to answer your question, there are more clinical trial for recurrent disease then newly diagnosed.

I have heard also that vaccine and oncolytic viruses are in infancy. I asked twice about the vaccine while my sister was being evaluated at Hopkins. I even talked about it to an ex-boyfriend who was now a neurosurgeon in LA. But then when I did my own research, I learned that Dr. Linda Liau (and a few others) was offering a tumor vaccine from the patient's own tumor. The surgery had to be done at the facility where the vaccine was offered. I deeply regret to having my sister part of this vaccine. Does it work? We don't know. Does the current treatment work? No of course not. We all know the odds. So my feeling is yes, vaccines and oncolytics are still in infancy but they are the window to a real cure.

I made my sister cry the other day and I felt awful. I was debating whether or not to test her tumor for a certain antigen. There is not a lot of her tumor block left at Hopkins. What if something better comes along and we can't test for it? And even if she is positive for this antigen, would we want her to be part of a clinical trial phase 1? She would have to stop all chemo agents to be part of this study. Is it worth it? Is is safe? I was having an internal debate and I wanted to talk to her about it. So I met her out at her favorite coffee shop.

"I saw your tumor like a horrible big spider, " I said next to her, "and through surgery and radiation we got it down to just miniscule baby spiders -"

"What do you mean baby spiders? My scans are clean" she interrupts me

"I mean at the microscopic level. You can't get rid of a glioma with only surgery and radiation. It has tentacules. Why take chemo then? You know that -"

I interrupt myself because now she is crying. I take a deep breath:

"I always will believe that you are going to live a long long life. We did everything that we could to put the tumor in a dormant state. But we don't have a cure yet. This is why we are looking into clinical trial; your clinical trial actually, you are the one who found that one."

She smiles a bit. We walk home. I felt regret. I should not have robbed her of her illusions.

J.

blackngray said:

I have the same tumor type as your sister
My MRIs have also remained stable ever since diagnosis. It is almost a strange limbo period to be in. The oncologist says to watch and wait. Seriously? But when I was diagnosed with this imposing tumor, I had a huge support system, plenty of on call doctors, nurses, volunteers, friends, strangers, visitors. NOW it is watch and wait. During the last 3 month doctor visit, me, my mom, my dad, and my daughter piled into the tiny office and waited two hours to for my oncologist. He looked at the MRI. I had all ready picked up the radiologist's report the day after the MRI, so I knew the results before him, I'm sure.
I can completely relate with how you feel in your message above. I was diagnosed with the same tumor as your sister in 2010. It was completely removed by surgery. I have not had a recurrence. All MRIs have been stable but one. I had one scare and it was possible that the scare was a spot of necrosis or a small tumor growing on the right side of my brain. We are unsure at this time and continue to remain unsure. Each MRI makes me and my family so nervous. All my support system is gone, except for my family. We truly have to be our OWN advocate and healthcare advocate. It's the honest truth.
Now that I am off of temodar I have made the decision to take on supplements. This is my attempt to take an alternate route in care of myself. Supplements that are natural and support natural bodily functions. I'm all about it. I feel good. I feel healthy. I'm not putting toxins in my body. Everything is available at GNC or at vitamin stores, or Amazon.com if I want bigger bottles. It's expensive, but cancer won't beat me and I won't watch and wait.
I like that your sister is active. I know that when I let cancer bring me down, I stay down. Getting out of bed is the hardest part. I feel the worst is when I stay in bed all day, but that is when I have a "bad day".
Ironic how the tumor is gone, but it feels as though is has taken away so many years of life away. Maybe that's the cancer treatment? Who knows.
But I love the support that you are giving your sister, but also remember to give some to yourself too. Pat yourself on the back too. Caregivers get tired too.