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Update on my sister grade 3 AA- 1 year out

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

Dear all,

It has been a hard few months on this board. A lot of people I have formed relationships with had their love one take a turn for the worse. Some died and some are dying. But through all of it, I am always amazed of the unconditional love that I witnessed.

I though some of the survivors out there needed some positive stories. My youngest sister (30 years old) is doing very well more than a year after her initial diagnosis of AA3. She still has zero deficits, running 5k, swimming and going out with her friends; she still works in physics (PhD) and she is still is the most intelligent person I know. She travels often (with me, her friends, or boyfriend) and enjoys life to the fullest. If she has any dark moments of desperation, she has not shown them to me. Her MRIs are stable.

I would have like for her to be in a clinical trial but she seems to be doing alright without it. I sometimes can go for a few hours and "forget" that she has been diagnosed. We are living a very normal life. If it was not for the wigs she has to wear and the monthly temodar we could almost imagine that this terrible nightmare never existed.

I know it has only been a year; but the longer she is in remission, the more I am hopeful. She is talking about having kids of her own one day.

Julia

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

Dear Julia,

It's wonderful to read such a good report about Kat! I love thinking about her doing all the things that she loves and enjoys. I'm sure that she and you both are really looking forward to your baby being born. I bet Kat will be a wonderful aunt!

Thank you for sharing this great news and for bringing some light and hope to this site. :)

Love and blessings,
Cindy

mighty6
Posts: 47
Joined: Sep 2011

Congratulations to you and your sister on her one year post-BT!
We started this journey almost at the same time, except my husband was dx with GBM. I am so glad that both your sis. & my husband are doing well after 14 months into the journey. As you said, the longer they are in remission, the better chance we've got.
With two young children constantly needing attention, we also get to "forget" the tumor lots of the time. The shadow will always be there, but we will enjoy what we have now.

Jane

connsteele
Posts: 232
Joined: May 2011

That is wonderful news! Even though our son lost the battle, I rejoice when I hear of others doing so well. I hope and pray that the good times continue for you both. She is fortunate to have such a strong advocate as yourself. Cheers to you and Julia. And please keep posting.

Connie
Mother of David
2/28/77-4/14/12

mighty6
Posts: 47
Joined: Sep 2011

Connie, thanks for your nice comments. You and Cindy has been courageous to share your journey and feeling while dealing with the hardest thing of one's life: watching your children leaving this world. As a mom myself, I can not even imagine that. yet you two, and other few moms on this board, dealt with it, full of passion and grace. I really look up to you, and I am sure your sons/daughters do too!

--Jane

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

Hi Julia:

I am very happy for you and your sister. That is amazing that she has no deficits! What a blessing. It must be wonderful to sometimes forget about this illness. Sarah has quite a bit of deficits but I guess it is because of where her tumor formed (left frontal lobe). Sarah just had an MRI and Alaska said it was unchanged. We are waiting to hear from Seattle. It sounds like good news. Most recently, Sarah had a seizure (first one since treatment). She woke up to a seizure on Monday. I was so scared and so was she. It temporarily impaired her but she has since recovered. We are back on Kepra and no driving for 6 months. Sarah is very very sad that she lost her driving priviledges. I was going to attend the Joyce Meyer Women's Conference but I cancelled that due to Sarah's recent problem. Overall, Sarah is 19 months out and she looks really good. Her MRI's are stable and her speech is getting better. We just live one day at a time with a positive outlook. We always have faith! Many blessings to you and your sister. Love, Edna

P.S. How long will Julia do Temodar? How much does she take?

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

I am so sorry she had a seizure! I had seizures in February, and have had a clean MRI for almost 3 years. They also took my driving privileges away for 6 months, and August was my 6 months. All my scans said everything still was stable, so tell her to not lose hope. They told me anytime you have head trauma, surgery, etc that there are stronger possibilities to have a seizure. They also put me back on Keppra to help keep them at bay. I had been off the Keppra a year, now I have been back on it for 6 months.

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

Hi:

Thank you for the encouragement. Sarah is very bummed out that she lost her driving priviledges. I try to encourage her and tell her that she needs to focus on the positive that her MRI is good. She really has been a trooper because she has been through so much. Thanks for sharing the information that it does not mean her tumor is back or growing. The doctor said the same thing. I am very happy that you are doing good. Sarah is taking three classes at the University and we are so happy that she is moving forward. I will continue to pray for all of the patients and their family's on this site. God Bless you and yours Michelle.

Edna

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

I am so glad that she is doing so good. I will continue to keep her in my prayers.

Michelle
Mobile, Al
DX 10/20/09

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

with stable disease. Jane, I am ecstatic that your husband is beating the odds. This is very very good news. And Michelle, you are more than 3 years out now right? I am very happy (and your family picture is so cute!). Edna, I am also very glad that your daughter's MRI are sable. My sister's tumor was on the right and your daughter's is on the left. If she is right handed then her speech center is on the left; but the brain is pliable, I am hopeful that her deficits will become less and less. We have not talked about stopping Temodar. (although a long time ago, someone mentioned a year).

Dear Cindy and dear Connie I have witness your battles and I will always continue to read all of your posts.

Sometimes, I feel it is just a luck game. Yes my sister is eating well, exercising, has a positive outlook... but I think luck plays a huge part of it. Lance Armstrong "It is not about the bike" felt the same. I feel out of control because it is not in my hands. I can just be as informed as possible and give my sister unconditional love. Lately I have also taken a step back and let her live her life. She knows I have her back. So she is spending more time with her boyfriend; often she is not home. Even though I miss her, I know it is a healthy sign that things are great.

Julia

sadinholland
Posts: 220
Joined: Apr 2011

We are a little over 2 years out and although my husband is doing ok for the most part, I am so scared. I read about how sudden things can change. He has never had a seizure. He is no longer working due to his fatigue and retaining information but overall he is doing well. The unknown worries me. I try not to think about it but I can't help it. I am glad to hear about loved ones doing well. I pray that they continue to do well for many more years.

God Bless!

PBJ Austin
Posts: 346
Joined: Mar 2009

In March of 2009 I joined this board just 2 days after the devastating news that my 25-year-old sister had been diagnosed with AA3. We were told she had 3-7 years to live and there would be no remission. I imagined that by 2012 she would either be gone or on the way out of this world.

My kis sis is a rebel and she never does anything she is expected to do, and her cancer journey was no exception. In less than a year's time she shocked the doctors by going into remission. She has been in remission for over 2 years now and she is going strong. Except for a big scar on her forehead you wouldn't know anything ever happened.

Never give up and remember that statistics do not apply to you. You are an individual person and cancer is different for everyone. Treatment is improving all the time and there is hope for everyone, I don't care what the doctors or the stats say.

God bless you all.

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

more good news.

Sadinholland, it is great that your husband is doing well and that his cancer is stable.

PBJ Austin, I always like to hear news from you because we both have sisters close in in age with the same diagnosis. I am ecstatic that she has been in remission for 2 years and I want it to be like that for a very very long time.

I only ask from life that one day at 80 years old, my sister and I can look back and be glad that these recent times were just a big scare. That we lived long and happy lives.

J.

biodeb
Posts: 5
Joined: Oct 2012

It is wonderful to read about people doing well in spite of brain cancer. My youngest son, 25 years old, has an AA. He was diagnosed last October and virtually no symptoms. The only thing he is dealing with is insomnia and some exhaustion. He is doing his monthly oral chemo, but other than that, he takes no other medication. He's still working and playing golf - never complains and just simply lives his life. I know he wonders about his future, but he doesn't seem to dwell on it.

We call this the new normal - life looks different now - but in many ways is still very normal.

I hope and pray that your sister is able to have children one day - she sounds like a lovely person.

God bless you all!!

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

My sister saw her neuro-oncologist a few days ago and he told her that now that she is a year out with stable MRIs her grade 3 is behaving like a grade 2. I shutter to think that it could behave like a grade 4.

When I was looking at the MRI spectroscopy I remember that there was one area that seemed more aggressive and the rest seemed indolent. I had asked the neurosurgeon if he was going to be able to take out all of the portion of the tumor that "lighted up" on MRI spec. He said yes. So I am hoping that what ever was left behind ( because you can never take all of the tumor out when talking about astrocytomas, oligo or GBM; it is actually a pet peeve of mine when I see posts saying "the surgeon took it all") is an indolent grade 2 astrocytoma and my sister will be cancer free for a very very long time. (maybe for ever?)

She is finishing up her last round of chemo. And then nothing. Just the supplements, the melatonin and the keppra. If she does well, the keppra will eventually be weaned also. Kind of scary to think that we are not doing anymore treatment against the monster. I know that she is relieved. She was even more relieved when we stopped the Xeloda. I am not the one taking the pills, so it is easy for me to say, why don't we continue a little longer?

Biodeb, I am glad that your son is living his life normally. I wonder if it is harder for the family than the patient to not dwell on the diagnosis? Since I am in the medical profession, I just know too much.

J.

sadinholland
Posts: 220
Joined: Apr 2011

I_Promise,

I wasn't aware that they couldn't get all the tumor on an olio. My husbands surgeon said he removed 100% of his timer. It's in all his records. Did someone tell you this?

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

Dear Sadinholland,

The surgeon probably said he removed 100% of the visible tumor. Unfortunately, oligodendrogliomas are a type of glioma and cannot currently be differentiated from other brain lesions solely by their clinical or radiographic appearance. Classically they tend to have a vasculature of finely branching capillaries that may take on a “chicken wire” appearance . They invade grey matter structures such as cortex.

Because of their diffusely infiltrating nature, oligodendrogliomas cannot be completely resected and are not curable by surgical excision.
You could get more information by reading journals on Pubmed or simply go on wikipedia. Or also ask directly your neuro oncologist for more info.

All the glioma have microscopic cells that have invaded the brain, non visible. In comparison, meningiomas (not gliomas) can be resected completely.

I hope I have not triggered any anguish. Someone did not tell me this information. Unfortunately I learned it in medical school. I never imagined that my own sister would have a glioma and that this nightmare would start.

J.

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

What Julia said is almost word for word what our NO told us when David had surgery. Our surgeon also said he removed 100% and then our NO told us that they can never get 100% -- there's always microscopic infiltrating tumor cells. I didn't understand back then -- or maybe I just could not accept it. I argued and said how could you know for sure that those cells were there if you couldn't see them? He sighed and tried to explain.....

The chicken wire vasculature and the presence of necrosis are two of the distinguishing characteristics that helped determine the anaplastic features of David's tumor--I think that's why they said it was a grade three.

I hate remembering when David was diagnosised. I hate every single thing about brain cancer.

Love and blessings,
Cindy

BenLenBo's picture
BenLenBo
Posts: 137
Joined: Feb 2012

Hello,
Yes, you are correct on the fingerlings that are associated with this type of cancer, that is why it is treated aggressively with Radiation and Chemo right after surgery. My son had Oli-3, he also has the 1p19q deletions that determine effectiveness of treatment on his Oli. All cancer lights up bright green on testing, so far his are clean. John Hopkins, Mayo and Roger Maris Cancer Center have patients with my son's diagnois's 10, 20 and 30 years out, and many who have never had a recurrance, but have all had the deletions.

We were only given these sites to gather information, physicians feel these are the only trustworthy sites:
www.nccn.com
www.cancer.gov
www.cancer.net
www.uptodate.com/patients
www.rtanswers.org

I do notice on this site, that every treatment facility has different treatment plans and
opinions on how to treat this type cancer. We are confident in out facilities, they are tops in the field of treating brain cancers, and can actually state facts on their patient history and treatment plans. My son is being treated by the top 1% Pediatric/Hemotologist Oncologist in the country. He has been through the whole treatment plan, not symptoms, no problems and no physical defects. He is living his life as if nothing has every happened to him. Physicians call him boring !!!!

Hope this helps others!

Carol

connsteele
Posts: 232
Joined: May 2011

It's so heartening to hear the success stories here. Also, Carol, thanks for sharing the web addresses of reputable web sites. I will bookmark them for future reference (my husband is a long term survivor of prostate cancer). I have a question re: your son's treatment and doctors. I agree that it seems every treatment facility has their own particular approach to treating aggressive brain rumors. You memtioned three top centers. Which one does your son go to? Did you get second and third opinions from the other two? Did they ever disagree on treatment plans and diagnosis?

Sometimes I feel so guilty that we didn't go to some other centers for additional opinions. (in one sense we did, I guess. he was originally diagnosed and had his surgery and radiation at Inova Med Center in Wahington DC. In addition, the rad doc sent his tumor sample to a Dr. burgers at Hopkins and he 's the one who dx AA3 ; his surgeon said medulloblastoma. Dr B also noted that his was an unusual tumor which leads me to think they really didn't know what kind it was. We then moved him home to Ohio and he was treated at The James Cancer Center at Ohio State and Dr. Cavaliere agreed with the treatment protocol..)

I guess my bigger question is: if indeed one goes to a major cancer center, how different would it be from the other top centers in the field? And what to do if there are differing opinions? It can drive one crazy during a time when one is hanging on by a thread anyway.

Hope that these good stories continue.

Connie
Mother of David
Dx AA3, April 2011

2/28/77-4/14/12

BenLenBo's picture
BenLenBo
Posts: 137
Joined: Feb 2012

Connie,
My son is being treated by all three facilities, it is a group effort in the treatment plan. John Hopkins, Mayo and Roger Maris Cancer Center are all working together. When our son had his tumor removed, all three diagnoised, met, ran genetic molecular tests, Benjamin was scanned from one end of his body to the other, before treatment plan was determined. All information about Benjamin's treatment is shared between the three facilities and are in constant contact with each other on his status. We were told, he was being treated aggressively, because they have the best survival rates. It does break my heart to see others on this site to are unhappy with their treating facilities, or insurance doesn't cover, or treatment is totally different. I guess we were blessed to be in the right place at the right time, or the fact he is being treated by physicians who are in the top 1% of the best doctors in USA. They had a group meeting of about 30 doctors, with various training from oncology, genetics, radiology, neurology,pathology, etc, when treatment plan was being set-up. To answer your other question - go to the centers that have a good track record for treating brain tumors.
I hope this answers some of your questions - I am so sorry to read your son's battle with
cancer- it is never easy, and I've said it before, "There are no owners manuals given out when
our children are born". All we can do is love them !

Carol

sadinholland
Posts: 220
Joined: Apr 2011

I_Promise, and Cindy
I am not angry at all. I appreciate the knowledge shared on this site. I never knew 100 % didn't mean all of it. I thought the infiltrating cells meant it was going to eventually come back. I always wonder if the NO is being totally honest with us in what he is seeing on my husband's results becausevhevgoes so fast. Thank you so much for all the information. Although it hurts to know, I feel it's best to know.

I too will never forget that day! I still worry every day about it coming back. I am terrified.

sadinholland
Posts: 220
Joined: Apr 2011

I_Promise, and Cindy
I am not angry at all. I appreciate the knowledge shared on this site. I never knew 100 % didn't mean all of it. I thought the infiltrating cells meant it was going to eventually come back. I always wonder if the NO is being totally honest with us in what he is seeing on my husband's results becausevhevgoes so fast. Thank you so much for all the information. Although it hurts to know, I feel it's best to know.

I too will never forget that day! I still worry every day about it coming back. I am terrified.

AshleyWF's picture
AshleyWF
Posts: 43
Joined: Aug 2011

Hi Connie,

I don’t think you should feel any guilt for not going to other centres. I think if you felt compelled to or if you didn’t feel you were being taken care of, you would have. Our strong feelings direct us.

Everyone’s story is different. My fiancé was diagnosed with Grade II Oligodendroglioma in his left parietal lobe last August. He went in for surgery immediately and was at 90% removal when he came out. A panel of doctors across Canada went over his genetic molecular tests (1p19q deletions) met and discussed his diagnosis and treatment needs. A portion of this tumour had stemmed to the other side, and due to location, it is not in an area they will ever be able to remove. After surgery we were advices to take the “wait and see” approach. There is no need for radiation if he can live the same quality of life for 5 or 10 years as is, as mentioned, the location plays huge into this. We did reach out and ask for a second opinion, only to be told the same thing (this is where we found contentment, but we were content in the wait and see prior as we have full faith in our doctors at the BC Cancer Agency)

I do not believe that anyone should feel broken hearted for reading or hearing that someone else has taken a different treatment plan or approach than another. What is suited for one is sometimes not suited for the next.

We are a year in now with no progression showing on his MRI’s. He is back at work, and unless he shaves his head, you would never have a clue that he has this. He lives, he smiles, he finds joy in everything he does. It’s often easy to forget at times the news we were hit with last year. I think when you follow your heart, when you trust your team, if your plan is not like someone else’s you’ve read on here, it creates less confusion. I remember in the beginning being so overwhelmed with the different stories, different treatments, different opinions. . . It’s nice to have the support and a place to ask questions, but you do need to find a point to draw the line and not let what you read here, effect or confuse you.

I am wishing you the best and you will be in my thoughts and prayers. There are many different success stories accomplished by many different treatment plans!

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