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Clean MRI !!!

falcon69
Posts: 25
Joined: Feb 2012

Yesterday my son, Scott, had his first MRI since the one immediately following his craniotomy on 12/23/11. The post op swelling has gone down and it his NO was happy to report that it was a total gross resection!! No visible tumor on the MRI! Of course his NO tempered it with, "of course we know it is still there"....meaning that there are still cells not visible on an MRI. He said that if the tumor shows no regrowth at the next MRI in June, which would be 6 mos out from surgery, it will most likely be many years before recurrence. Scott's drs. have never mentioned statistics about survival time, they are very positive and my husband and I really like that. In addition, his NO said that oligo/grade 2's rarely show regrowth at 6 mos out, so the news is very good for now. The course of treatment remains the same. Monitor w/MRI's every 3 mos for 2 years, every 6 mos for 1 year and then 1 MRI yearly. Chemo/radiation will begin upon recurrence, which is hopefully many years from now.

Blessings to you all,

Julie

Mom of Scott/31yrs (for 2 more weeks)
seizure/Nov. 2011
dx/oligodendroglioma/right frontal lobe
craniotomy/12/23/11
gross total resection
final path report/oligo/grade 2/with 1p 19q deletions
monitor w/MRI's every 3 months
1/6/12 major reconstructive shoulder surgery due to fall during unwitnessed grand mal seizure due to tumor
Barnes Jewish Hospital-Siteman Cancer Center- St. Louis, MO

leprechaun2
Posts: 76
Joined: Jul 2011

Wonderful! Congratulations to all of you and thanks for sharing the good news with us!

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

That is so great to hear!!! I will keep you guys in my prayers!

Michelle
Mobile, Al

BenLenBo's picture
BenLenBo
Posts: 144
Joined: Feb 2012

Our son Benjamin was diagnoised with Oli II/III with 1p19q deletions, had 99% removed, no visable tumor on MRI. John Hopkins, Mayo and Roger Maris Cancer Center decided to treat this cancer aggresively- 6 weeks Chem/6weeks Temador. One month out no visable
tumor on MRI and is due for his second MRI Apri 13th. He is also, doing 5 days/28day cycle of temodar for the next six months. Benjamin is doing outstanding, back to work, hanging with friends and living life as he normally did before his tumor diagnois's. He is 28, diagnoised September 25, 2011.

Our cancer treatment facilities- all three have seen patients 18 and 20 plus years out, but were the ones that had the 1p/19q deletions. Also, have read survivor stories 30 plus years out. Doctors should never date cancer survival rates, as on survivor put it, he was given 5 years, so for those years he prepared for the end, he is now over 10 years out.

On this site I have noticed that each treating facility as different methods of treating the same type tumors. Is it a guessing game or what? Some facilities treat according to the deletions and other shrug it off. Who is correct?

Prayers for complete recovery!

Carol

stacy0611's picture
stacy0611
Posts: 14
Joined: Feb 2012

Thank you for sharing your wonderful news! These are the stories that keep the rest of us fighting hard!

Blessings!
Stacy

Scottgri
Posts: 44
Joined: Mar 2012

I just had my 1 year anniversary since original GBM diagnosis. Back to work and right back into my normal life again. Gliadel,radiation,temodar,Avastin has been my magic mix. 4 more cycles and then we'll put together my next plan.

I feel great!

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

Hi Scott:
Congratulations ! One year! I am happy for you. My daughter was originally diagnosed with Anaplastic Astrocytoma 3, but a 2nd opinion thought it was GBM. She had regular surgery, radiation with Temodar and now she has been doing infusions of Irinetecan and Avastin (2x a month). At the beginning of the 2nd infusion she takes Temodar at home for 5 days. Her MRI's are stable so it seems to work. Thank God! I am very concerned about a plan if the tumor begins to grow back. Where do you receive care? What is you plan going forward? We have one infusion left and then we will do MRI's every 3 months. With God's blessings my daughter will go to college in the fall and this mess will be behind her. Congratulations on being back at work and having that normal life again. What a blessing! Happy Easter and God Bless you and yours.

Edna

Scottgri
Posts: 44
Joined: Mar 2012

Hi Edna,

I'm enrolled in a phase 2 trial being managed by Duke University, I do not have enough words to describe how wonderful everyone there has been. I have a local neuro Onc. that administers the Avastin. Same schedule as your daughter-28 day cycles, days 1-5 on temodar, days 1 and 15 i get Avastin.

I might go with Avastin every 3 weeks instead of 2. My local guy thinks im tolerating the Temodar well enough to keep pulsing it too. You probably already know this, but the downside of Temodar is it's toxicity, it's pretty nasty stuff, but it seems to be killing my bad guys off. I haven't had any platelet or cell count issues for 4 cycles now, so i'm good!

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

Hi Scott:

Thanks for the reply. So you already have taken Temodar for one year? And then, you may continue Avastin every three weeks, but is that the only drug you will continue on? And how long will they keep giving you Avastin?

I have heard very good things about Duke. Thanks Scott. God Bless you.

Edna

Scottgri
Posts: 44
Joined: Mar 2012

Hi Edna,

Unfortunately none of those time frames are defined yet so I just don't know. We're talking about developing the long term treatment plan in May when I go back. My local NO think I should also keep pulsing the Temodar too. I finish the trial in July.

Scott

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Edna,In reading your posts I was confused. Did they confirm its now GMB ?

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

Hi:

In March of this year MD Anderson's pathologist said it was Glioblastoma. I have the pathology report. They used some of the tissue from the original tumor removed in Febuary 2011. In Febuary 2011, she had her tumor surgically removed at Seattle Children's. Seattle rated her tumor Anaplastic Astrocytoma 3. When we got home from Houston, I gave Seattle the information. The Seattle NO stated that pathologist sometimes do not agree, they do not change their finding. MD Anderson said due to the abnormal blood vessels and the rate of cell division they considered it GBM.
The good thing was that MD Anderson thought her care was appropriate. So, I don't know for sure what it is. The NO in Seattle said they are both of Glia cells, they would not change the care.
We still feel in limbo though because we do not have a plan going forward if she has a reoccurrence. She stops her treatment at the end of this month. The next MRI is in May.
I was thinking of looking at Duke or John Hopkins. UCSF is supposed to look at her records. It seems like everyone was concerned that she already had Avastin. I wanted her to do the low dose Temodar longer but everyone thinks she needs a break. I want her to have a break, but I am petrified.
I don't know how else to confirm it, maybe a 3rd opinion? I am just worried that so many docs will confuse it. But, I was hoping to get hooked up with a bigger hospital that is on the leading edge of the treatment for this. Seattle has been very good to us, but I was thinking a bigger one that is a leader in treatment. This is so confusing! Thanks for all of the information everyone. God Bless you all.
Edna

BenLenBo's picture
BenLenBo
Posts: 144
Joined: Feb 2012

Edna,
My treating facilities are Roger Maris Cancer Center- Fargo, ND, Mayo-Rochester, MN and John Hopkins- Baltimore, MD, when I was diagnoised all three facitlies had a treatment plan from day one. On my first meeting, I was told how they would approach my cancer, all the drugs that would be used and for how long. Treatment plan has not changed, only problem I had was Low Platelet Count, caused from Temodar. I only have two treatment left, done day before my Dad's birthday. Then I will have MRI's every three months for the first
two years, then every 6 months after that. My physicians were very adamant about this treatment plan, proven winner for their patients who are 18 plus years out, there are some
who are 30 years out.
Only thing, I worry about is after reading what everyone else is going through, will my
day come when I am sick or the medicine makes me unable to function at a 100%. Because I have not had any problems with my treatments. Physicians believe in treating the symptoms before they arise- when I was doing 6 weeks Radiation/Chem, I took a motion sickness pill 20 minutes before I took my Temodar. No problems. Now, I am taking 340mg of Temodar and
Ondansetron (Nausea) for 5 days and 28 days off. Month 4-platelets were low, I was put on Decradon for 4 days, results were dramatic- platelets jumped to where they were suppose to be 150,000. My mother also found diets promoting platelet development ( eating like romaine lettuce, blueberries, protiens etc).
One issue, I do have about this site, is each area of the country seems to treat the same cancers so differently- for example- 1p/19q deletions were an important factor in my
treatment plan, whereas other facilities have stated differently. John Hopkins is the authority on Brain Cancers- so who is right, or is it physician's personal ideals? Who does one trust fully with their life? Just pray they are all working for the good of the patients and not their EGO's!
Just a comment: My grandmother had leukemia, she was on so much medication, had developed so many symptoms, that one day my grandfather and her threw out all her meds, gave her time to recover. She started over with only one needed medication, living another 23 years. She died when physician gave her 5 pints of blood so fast, it burst the vessel in her brain. If that didn't happen she would probably still be here. My parents constantly stress, the medication part - how necessary is it, what are the benefits.

Prayers to you and your daughter for better days ahead!

Scottgri
Posts: 44
Joined: Mar 2012

I had 2 pathology labs take over 2 weeks to decide if mine was and Astro or a glio, and that was worth daily pressure from my GP to get an answer. I took from that it's hard to tell the difference. Mine turned out to be classified GBM. I think there are certain markers that lead them to a conclusion, but there is a lot of human interpretation of what they see under the scope.

bt1943
Posts: 6
Joined: May 2012

I praise God for your son's good report. I pray he
will continue to get good MRI results. My 40 year
old son is not so lucky. He had his second brain
surgery in June, 2011 and now the tumors are in liver/
stomach area. I covet your prayers. BT

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