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my darling sister, MRIs, and myself

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

Hi all,

I have been thinking of every single one of you on this site; even the ones who already lost their love one and come here for comfort. From the bottom of my heart and send you my love and hope that tomorrow is a better day.

My sister and I went for her MRI yesterday; she insisted on wearing her highest high heels and a knee length dress. She looked like Audrey Hepburn. It makes her feel confident and powerful. And when it comes to brain tumors we need all the help we can get. We saw her nurse arriving from a far:

"You are going to hear her talk to me like a 3 years old", my sister utters under her breath for my benefit. "Last time she told me they were going to give me "medicine" through the IV for the MRI."

"Medicine really?" I arch an eyebrow. "Does she know you are a PhD candidate in physics and probably can explain to her how an MRI works?"

"No, we never got that far."

"Hiiiiiii!" says the nurse with a huge smile, "are you ready for a tiny bitsy needle in your arm? It won't hurt at allllllll, I promise."

It could be a lot worse, I tell myself. We could have a nurse who bark orders.

I wait patiently in the waiting room; I call MD Anderson (her oncologist) to find out what is the process to get the old medical records. I have to prepare a file for UCLA, Dr, Linda Liau who is doing a lot of immunotherapy clinical trial. I told her about my sister and she wants to review everything, from the beginning. I am feeling a bit hopeful about UCLA, but at the same time I have already explored so many avenues that lead nowhere and we are still doing conventional treatment. Plus most the clinical trial wants some tumor recurrence, which just makes blood icy to hear to read the word "recurrence". But lately I have been thinking about my sister's tumor history differently: in 2005, there was a lesion on a MRI that was misdiagnosed as focal gliosis secondary to mononucleosis. Fast forward to 2011, the lesion is now a mass in the right frontal lobe that needed emergency resection. So I guess, I could call that tumor progression. Could that history open more doors to clinical trials?

I was discussing this with my mom the other day and how I am still looking for a clinical trial. I know she is disturb by the fact that I am not satisfied with the status quo. She says: "What if she gets worse from the clinical trial? She perfectly ok now." " It would be a risk," I answered, "but so is doing nothing when we know the recurrence rate. Medical journals say that it eventually comes back. She could be one of the lucky one that never has a recurrence. But maybe the clinical trial would put the odds in our favor. I would prefer to die from the treatment than from the disease."

Of course while speaking with my mom, I became the patient and I am the one with the brain tumor and not my sister. I tend to do a lot of that. The latest trail I am following is regarding a clinical trial that injects directly into the tumor white blood cells from another person. For course the while blood cells (which serve to kill pathogens) are treated by different methods before putting them into someone's brain. An old pilot study did it on 6 patients: 3 GBM and 3 anaplastic astrocytoma. All patients were facing hospice. Unfortunately the GBM patients died because the tumor was growing too quickly. Of the 3 anaplastic astrocytoma, one survived 40 months, and the other 2 are still alive 16+ years.

I well aware that a study of 6 patients cannot be conclusive. But it gives me hope.

My sister is coming back. I can see that she is crying. Tears are running down her cheeks.

"Are you ok?"
"I am afraid. I am so afraid. I have not been able to sleep well this week. I wake up at 5am and I can't fall back to sleep."

I don't tell her that the MRI is going to be ok. She knows I cannot promise her that. I give her a hug in silence. My heart breaks. Once again I feel like destroying a wall, or wailing to the sky down on my knees. Why is this happening?

Our neuro-oncologist told us last time that we could ask for a wet read, so that we would not be in agony waiting for the results until next week, when we meet with him. The nurses and the receptionists are at first reluctant to do so:

"You really can go home. You can call your neuro-oncologist to find out the results before next week."

Have you tried to get in touch with a doctor? I want to say out loud. But instead I say:

"No, we will wait."

So my sister and I make ourselves comfortable. I get some salt and vinegar almonds that I have in the car, since we are both hungry and some bottle water. We manage to read all the trashy magazines, like People, Fitness, Glamour. I think the receptionists got the message that we were "camping" for a while, because one of them came to see us and said:

"Our radiologist got in touch with your doctor. You should check your email."

Sure enough there is a message from our dear Neuro-oncologist. We squeeze each others hands. My sister's phone is faster. She sees the title to the email first: Congratulation. She exhaled loudly as if she had been holding her breath for the past week.

"Congratulations again to a very good MRI! Whatever you are doing young lady, keep it up!"

"He means that you have to continue wearing high heels" I say to my sister.
"You are so stupid" she answers back lovingly.

nettw
Posts: 5
Joined: Mar 2012

Hi,
This is the first time posting, but your post made me want to share. My husband has AA3, this is his second go with brain cancer. But the real reason I wanted to post is because he also receive a clear MRI scan this week. I dont know how long out your sister is, but my husband is only on the first scan after baseline after surgery, chemo and radiation, but I dont think it matters how far out but that it was clear of course we have a long time ahead of us and a lot of stress but I like to be happy for the moment.
Annette

Scottgri
Posts: 44
Joined: Mar 2012

Congratulations on the clean scans!

Me too, exactly , to the day, one year from my first one showing the tumor "GBM". I am still tumor free and back to life as normal!

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

Hi Annette,

My sister had a tonic-clonic seizure on July 26th 2011; the MRI showed the tumor in the right frontal lobe; she underwent debulking in august 2011, followed by targeted radiation and Temodar. We added a second chemo Xeloda a month ago. She is still on keppra and her natural supplements. She is off steroids!! :)

When was your husband first diagnosed? You said that this was a second go with brain cancer. Tell us more. I am happy he has a a clean MRI!!!

And Scott 1 year out and clean MRI!!! Yahoooo!
Julia

nettw
Posts: 5
Joined: Mar 2012

Hi
My husband had a grade 2 oligo mixed, right frontal lobe also, in 98-removed 99 no further treatment, other than for seizure but was off all meds when he had a seizure June 27, 2011 at work,we knew deep down that it was back, he has had total of three seizures this time, he is on Keppra for life. We went to see a Neuro surgeon at Johns Hopkins in July -Aug time frame, said it was back after looking at previous and new MRI's. Had surgery 2 on Sept.16, at our follow up we were told AA3, we expected this, lots of research. He had 33 radiation treatments with temodar, he had to stop temodar with 9 treatments left, platelets plummeted. After that 4 week wait baseline MRI, which was good. He could only take one 5/23 maint, dose of temodar again platelets to low and not rebounding quick enough. So now we are on 2 month scans, life is still worry some with what ifs, but I try to put them aside and live for the moment, Hope this gives little background, he was 36 the first time and 47 the second, much scarier this time for all of us we have 3 kids, 28,26 and 19 and 2 grandkids 3 and 4.
Annette

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi:

I am very happy for your good news. I think of you and your sister often too. I love it that she likes to dress up and wear high heels because so does my Sarah. Sarah has quite the collection of high heels. I also feel hope when I read about the trials you are tracking. Both of you sound amazing - very intelligent. Julia, did you ever read that there was a connection between mono and brain tumors? I thought I read something about that. I find that interesting because Sarah had mono as a Junior and then got her tumor a year later as a senior. I hope you and your sister are having a grand time together. Sarah has only one more month of chemo. She is very excited to be finished. I am very nervous. I am still looking for another neuro-oncologist to help us if we have a reoccurrence. I am curious about John Hopkins, UCSF and Duke. UCSF sounds promising. John Hopkins looks top notch. I have not looked at Duke at all yet. Sending God's blessing straight to you and your sister Julia. Expect A Miracle! Love, Edna and Sarah

hunter49
Posts: 200
Joined: Oct 2011

I am a prostate cancer survivor but I have a friend whose father in law has a gliosarcome and my dad had a GBM. This is a great story keep it up you will inspire many and that can be the best treatment. So happy for your success

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