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

I_Promise's picture
I_Promise
Posts: 208
Joined: Aug 2011

Dear All,

I have not posted an update in a while.

My darling sister is doing well (if one can do well from a diagnosis such as hers, anaplastic astrocytoma). Her MRI brain is improving, she just got the results of her latest one; there is no abnormal blood flow seen on the MRI spectroscopy. The cyst that had formed in the resection bed is getting smaller, now it is 5x2x2.5cm. She is working full time and she just completed a 5k race for miles for hope (a charity for brain cancer). She actually gotten quite good at running, and she signed me up and my husband to do another 5K.

She is going down to 2.5mg of prednisone tomorrow and I am glad because steroids affect the immune system and I want her immune system to attack the remaining microscopic tumor cells left behind. As I am typing this, she is on her day 4th of 5 of Temodar (plus Xeloda, the chemo that her tumor cytology analysis showed being sensitive to) both oral pills; she is feeling more tired than usual but her friends convinced her to go an event downtown where a lot of young professionals meet; she loves putting on a pretty dress, high shoes and feeling that she is not a brain cancer patient but only a nuclear physicists chatting with lawyers, doctors, etc.. I will go as well and mingle.

One thing that is always on my mind is recurrence. When I read past posts on this website, I see that people sometimes are doing better, go on with their lives and suddenly, the tumor is back and the nightmare comes back in full force, even worse than before. I know that some tumors don't come back; but all health professionals agree that it does most of the time.

To that effect, I am not comfortable waiting. The treatment offered is just not good enough. So night after night, I read about clinical trial. There are so many barriers to participate to a clinical trial that I would laugh in ridicule if it were not for the fact that I want to cry.

I believe in a few things:

1) It is better to approach the tumor via multiple treatment: this is why I have been looking into immunological adjuvant. There is a new one the NY-eso-1 vaccine trial. But when I asked for more info, such as testing the tumor sample to see if it carries the NY-eso-1 antigen (because if it does not, then why give the vaccine???), the secretary told me that they do not test for it; which is a contradiction from what I read at clinicaltrial.gov.
And then there is this mysterious GAA synthetic vaccine used in glioma (so you don't need surgery to make the vaccine). It is used here and there in clinical trial. I can't find the list of which GAA peptide they are using (because then I could have my sister's tumor stained for such antigen); and I can't find results of the phase 1. The same GAA vaccine is used in recurence AA3, low grad AA, GBMs and children. I finally decided to give the info to my NO and see what he dig up.

2) About the risks of clinical trial or trying something a bit new: I would rather die trying to beat the disease than have the disease beat me. I read that once in a post here, and it made a lasting impression. My sister feels the same way.

I want and I need to create options for her while her MRI is stable. Because if there is a recurrence, I will drop in panic mode and I don't want to make a mistake and pick the wrong treatment. My friends always tell me that I have done everything that can be done and the rest is not up to me. I disagree. There is still much much more to be done. Look at Michael J. Fox changing the face of Parkinson.

I love you all,

Julia

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

Your sister is very lucky to have you looking out for her. I admire the love that you guys have for each other, it reminds me of my brother and I. I am so glad that her MRI is stable, and will continue to keep her in my thoughts and prayers!

Michelle

connsteele
Posts: 232
Joined: May 2011

Good to hear that everything is stable for your sister. I really appreciate your updates and especially the information you provide re: treatments and clinical trials. That's another value of this list: we all learn from each other's experiences and knowledge gained on this road.

I too am trying to figure out a plan B and plan C, should our son need it, but I'm at a loss. It seems that the ones I've seen on the .gov website all list criteria that excludes our son (he's a type 1 diabetic, his tumor(s) are in the cerebellum, and his Karnofsky score is maybe a 50 (not sure how to properly evaluate that...could be a 60).

I've been thinking about this alot because on Monday he has his MRI and I'm not expecting a good report. (The last one in Dec. wasn't good either...showed a new tumor.)In the past week, his balance has gotten a little worse, so that he now uses the walker all the time instead of the 4-prong cane. Even with the walker, he has almost fallen twice, both times backwards, which of course a walker can't prevent. Go figure. I also think his fine motor, especially on his affected side (right) has gotten a little worse.

On a brighter note, he seems a little sharper mentally and is more involved with his computer and XBox, a big improvement over laying in the recliner with a blanket pulled up over his head. It might have to do with the fact that he is back up to his regular anti-depressant dose, something that had to be cut back while he was taking the procarbazine.

That's what's up with me today. So glad there is a place like this list to unload.

Hugs to you and your sis.

Connie
m/o David, age 34
dx June 1985, medulloblatoma (complete resection, radiation to head and spine, CCNU, vincristine, prednisone)

dx April 2011, AA3 (surgical biopsy/debulking, radiation/Temodar, 5 cycles of 5/28 Temodar, completing first 6-week cycle of CCNU/Procarbazine

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Connie.

I hate the feelings that come up when an MRI is in the near future. I will be praying for a good report...and I'm so glad to hear that David is feeling like doing stuff with his XBox and computer. I always feel a little better when my David is using his iPad.

Does your NO have any suggestions about alternate plans for your son if there is a need for a different course of action down the road? You are really in a tough spot since your son has other issues that eliminate him from participating in any clinicals. Is another surgery out of the question?

I will be especially thinking of you and David on Monday, and I'll be checking CSN for an update. Please post when you can and let us know what the MRI shows. Sometimes when I thought we were going to get really bad news--like when they did the MRI after David's two really bad seizures and I thought it would be a really bad report, but instead there was dramatic improvement.......I was surprised and we got good news. There's been several times that that has happened. You just never know when you are dealing with brain cancer.....

Love, blessings, and peace to you,
Cindy in Salem, OR

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

Hi Julia:
I completely agree. We want to be ready. That is why we are going to MD Anderson to hear what they think of Sarah's treatment and what we should do in the event of a reoccurrence. Sarah just had an MRI so we could bring a current one with us. Her appointment is March 5 at MD. I am nervous about the MRI because we lowered the Temodar quite a bit between October and December. Thanks for sharing your options. I still have faith! I know he is on this walk with us. God Bless you Julia - you are an awesome sister. We do not know the genetic makeup of Sarah's tumor. Our NO in Seattle said it is not generally done for AA3, is that what you found to be true Julia? MD requested her tissue so perhaps they will tell us. Julia, I appreciate your research and knowledge. Often times, I feel overwhelmed by all of the information. I send God's blessings to you and your sister.

Edna

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Julia, and everyone....

I have written so much and then deleted it and written more, and then deleted that too. I feel like I am being so negative....I'm still having a hard time, I guess. It's like I am grieving the initial diagnosis all over again....

I had asked our NO and the doctors at NIH about vaccines and they both said that the research is still in its infancy and isn't available for David's situation. I didn't pursue it but I think they were saying that because David had a recurrence---the vaccines are more for an initial diagnosis? Is that correct, Julia? But anyway, I feel like the die is cast for us...we are committed to the BBBD now.

I think I was naive about recurrences before David had one...I don't think I realized how very serious they are. I am learning the hard way. I am going to start researching clinicals again but I have a bad feeling that if the BBBD doesn't help David, he may not be physically able to participate in another clinical. This one---the BBBD---is (in my opinion) very harsh and it's taken a lot out of David. But not everyone has the issues that David has had. I have a hope that this treatment might be the one that knocks David's tumor out for good. That maybe David will be an anomaly and beat this. Just maybe....I'm praying for it to happen.

Here's the clinical in which David is participating: http://clinicaltrials.gov/ct2/show/NCT00303849?term=blood+brain+barrier&rank=6

I hate reading that one of the purposes of this trial is to determine "toxicity levels." I don't want them to get near toxic levels with David.
I hope that it was a good choice to participate in this clinical. Like you said, Julia...there's no room for mistakes.

I got a voice mail confirming a test for David, a hearing test that they do right before a BBBD. They had it scheduled for Tuesday. I was dumbfounded because David is in no shape for another BBBD. I seriously think it would kill him if they did it right now. So I was going to call them and tell them that David is not up to a BBBD but I wanted to talk to David first. As we were talking about it, David said matter-of-factly, with a tinge of regret, that he didn't really care if he lived or died any more. He said that he couldn't do anything he liked....couldn't go to the gym, couldn't play sports, can't really do anything...not even walk next door to the neighbor's house. He said that he didn't really have much of a life any more. He said that he would still fight though, for the sake of his family and friends that love him. I bent my head down and wept. I told him that I didn't want him to suffer for my account. I said that he was totally entitled to feel that way....but that there were still a lot of things left for him to do and enjoy...Sunday dinners with our family, playing Bananagrams, going to a friend's house and watching the game on TV and eating pizza, seeing his nieces and nephew grow up, spending time with his family and friends who love him....and I told him that I believe that once we get on top of the infection etc and get the BBBD "tweaked" and he gets the right amount of disruption, that things could be a lot better. I think I helped him because later on, he actually laughed at some of the things I said and did. I try so hard to lighten things up and not let our situation be all doom and gloom....

I called the NO and the voicemail was a mistake...they have us on the calendar automatically for treatments every 4 weeks. They are saving a spot for us in their treatment calendar, so that's why I got that call. They said that they won't even consider another disruption until the middle of March at the earliest.

But...guess what? Listen to this.....David told me that his leg---not the one with the two clots in it, but the other leg--was numb. I waited overnight to see if it would go away...maybe he slept on that leg funny and it went to sleep? I called our NO this afternoon and he said that he was concerned that David was developing more clots in his other leg, so he told us to go to ER. So off we went....not talking much. I'm sure that David was thinking the same thing as me....not more trouble! How much more can he take? Well....they did an ultrasound, and surprise! Not only did he NOT have any new clots....the two original ones are gone! YAY!!!! Finally some seriously good news!

We're hanging in there....

Love and blessings,
Cindy in Salem, OR

mighty6
Posts: 47
Joined: Sep 2011

So happy for you and David, Cindy! i, as most of everybody else on this board, listen and follow your story a lot. Thanks for sharing all the details, up and downs. I will continue to cheer for every success you and all other have.
My husband has GBM4, which probably is the worst you could get. This is why 90% of the brain cancer trials are for GBM. So we seem to have lots of options :-( But trials are for research purpose, saving one's life is just the secondary goals for researchers.Just like a few others mentioned, there are many barriers to get into the trials, I hate this fact. but had no choice.

In a way, I am happy for David, Julia's sister and all others with 2/3 grade tumors, because you loved ones get better chances. But hey, even we are doing fine after 7 months. My husband's KPS is still 100, can you believe it!

Please keep us posted. All the best to all !
-- Jane

I_Promise's picture
I_Promise
Posts: 208
Joined: Aug 2011

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.

I_Promise's picture
I_Promise
Posts: 208
Joined: Aug 2011

A few words to all the people newly diagnosed: after the chaos of the diagnosis, the surgery, the radiation and the chemo... you can have a normal life again. My sister and I are in a routine now; of course we live in the fear of a recurrence. But we have moments of happiness when we "forget" the tumor and just enjoy life.

Love,

J.

blackngray
Posts: 11
Joined: Mar 2011

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.

I_Promise's picture
I_Promise
Posts: 208
Joined: Aug 2011

We believe in alternative medicine: my sister has a row of bottles: she takes fish oil, antioxidant, vitamine B, melatonin (because of the Italian studies on brain tumor and the survival with melatonin) and others supplements like green tea, some mushroom from Japan etc..
She is training periodically for a 5 K; I firmly believe that while there is no cure for astrocytomas, a new homeostasis can happen where the tumor is kept in check by the bodies immune system.

Don't let the tumor bring you down. Please be as active as possible. Every day that you spend in bed, the tumor won. I know it is easy for me to say, I am not the one with the tumor. But I can assure you that there are times I have transformed myself into a drill sergeant and got her out of the house to at least go for a walk. It is called tough love for a reason :)

She is exercising more than I do now. There was a women who was diagnosed with AA3 and she was a triathlon champion. I don't know if she is still out there, but I know that she was at least 15 years out of diagnosis. And then there is Lance Armstrong who has mets to the brain and the lungs that ended winning 6 more tour de France. I hope I don't sound to much like a preacher.

All the best,

J.

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