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hard to connect

mccindy
Posts: 82
Joined: Jun 2013

I'm glad that our cancer is so rare that there aren't very many of us out in the world, but it is frustrating in some ways because it's difficult to find and maintain connections on boards like this one.  I check here frequently, but it seems as though the members from the past are either recovering well, or have lost the fight and don't come here anymore (not that I blame the family members at all).  It's just tough because I beleive it helps each and every one of us to stay connected and talk to each other - after all, who knows better than us what we are going through?  I am hoping we can forge some tight bonds and continue to help each other out.  I personally have a WHO grade II diffuse fibrillary astrocytoma that was 99% resected this past July 11th.  My last MRI was in October and was clear for any regrowth.  I'm scheduled for another MRI and an EEG this coming April. I see an NO at Mayo Clinic in Rochester, MN. 

BenLenBo's picture
BenLenBo
Posts: 138
Joined: Feb 2012

Yes, it is hard to connect with individuals over a lengthy time.  I have noticed since we started on the site when out son was dx with OLI II/III

that most of individuals from a few years ago are no longer on the site.  Once their loved one's have lost their battle, they no longer show up

on the site.  What is great is to hear from the survivors on this site.   Benjamin is totally cancer free, has been since his surgery September 2011.

He did do chemo/radiation for any possible cancer cells, does have 1p/19q deletions.  His tumor was dx at John Hopkins, Mayo did not the

the resources to dx.  He suffered no physical or mental complications, is 100%.  He was put on an anti-seizure medication right out of surgery,

and radiation and chemo started 6 weeks later for 6 weeks, and then Temodar was increased for another 6 months.  Oncologist he had was

in the top 1% of physicians in the USA.  His MRI's are all the same and can be stacked on top of each other, no cancer present.  Benjamin

no goes every 6 months for MRI Scan and checkups.  His treating facilities are Roger Maris Cancer Center, John Hopkins and Mayo.  Roger

Maris Cancer Center has been wonderful, physicians are very upbeat, and have seen patients 20 to 30 years out with this rare cancer. 

      The hardest part was first to accept the words Brain Cancer- scarey for him and also our whole family.  We sat in limbo for weeks after the

initial surgery, waiting for a dx.  Days just ticked by slowly, but we ran our regular schedules while Benjamin was recovering at home.  Tried to

keep our routine as normal as possible.  We had lots of support from family, friends and the community we live in.  Benjamin's friends would stop

or check in daily, even took him on outings with them.  Kept his spirits up: in talking with Benjamin he always stated , " IT IS WHAT IT IS AND WHY

NOT ME . "  as we were all going why Benjamin, he is so kind hearted, loving and a great person all around.

       My experience on the site, has been people are so frustrated with their medical providers or insurances.  I included in one contact session what to

look for in your treating facility. Remember insurance company agents to make decisions are not trained doctors, they are looking at the bottom

dollar amount they can save the insurance company- so fight for your treatment.

      Hopefully you will remain cancer free, and please don't let it rule your life, life each day to the fullest of your capacity and remember to

FIGHT-FIGHT and FIGHT some more.

 

(((Hugs)))

 

Carol

mccindy
Posts: 82
Joined: Jun 2013

Hi Carol,

Thanks for your kind words and support!  I've read quite a bit of yours and Benjamin's story.  It's so inspiring and how wonderful that he is considered cancer-free.  Those deletions really do seem to be the key for how chemo works to eliminate any residual cancer cells.  My pathology for the deletions didn't show any, but then astros are much less likely to have them than olis are,  boo.  My NO was pretty frank with me the last time I talked to her.  I asked her about prognosis since the resection and since my last MRI was clear.  She said, "I'm going to be frank with you.  The surgery did not cure you; you still have cancer.  Part of the tumor is still there and I can tell that it will for sure grow back.  When it does  start to grow back, I am going to use radiation to try to stop that growth.  That doesn't mean you have a number stamped on you; you are not a statistic.  You are a person and every one's experience with brain tumors and cancer is different.  The tumor might grow back in a year or two, or it might not grow back for ten years, no one knows."  I'm guessing she didn't mention using chemo in conjunction with the radiation because I didn't show the deletions and astros don't respond as well as olis to chemo with those deletions. 

that being said, I intend to fight this thing for as long as I have breath to fight with!  I'm hoping that new treatments will come along that might actually make me cancer-free some day.  As my son tells me, "You are a strong person, 20 years from now this will all be a distant memory for our family."

sadinholland
Posts: 226
Joined: Apr 2011

I feel the same way about this site. In 2010, when I first started posting, there were so many here. I received lots of information and support. Now it seems hardly anyone visits this site anymore. I know many of them have lost the battle with their loved one, and it breaks my heart. We have to keep fighting and keep our strength. My husband is dealing with a recurrence now and it is so difficult. He seems to be doing ok, I'm just scared, and it seems there is nobody here anymore that I can communicate with for support and information. I feel so lost. 

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

McCindy: You remind me of my sister. She also has this incredible will to fight. And eventhough your NO is frank and thinks that the tumor will come back, remember there is small percentage of people that do not have reccurences. You might be one of them. So fight but also allow yourself to live carefree if you can.

Sadinholland: I am still here. I will follow your story and your husband's reccurence. Let me know how he is doing. And tell me about how extensive the reccurence is and what is the plan per his NO. xoxo

J.

sadinholland
Posts: 226
Joined: Apr 2011

I_Promise,

Thanks! I appreciate you responding. How is your sister doing?  I recall your last post with wonderful news. I am very happy for her. My husband has an appointment Dec. 5. I'm not sure what will happen, if he will get a second dose of CCNU or what. I am just praying this CCNU is shrinking the tumor and nothing new has developed. I am constantly on this site looking for updates on some of the ones that were here a while ago, but you and BenLo seem to be the only ones still on from when I joined in 2010. God Bless and thanks for responding!  

 

mccindy
Posts: 82
Joined: Jun 2013

Thank you I_Promise, your words are very helpful.  I enjoy reading your posts about your sister, as I find her to be an inspiration.  Most days I try to just enjoy my life and not think about what's going on in my head, or feel positive about my future.  I think the roughest part is thinking about the MRIs and hoping that nothing shows up.  With luck, I'll be one of the lucky few who never have regrowth. 

Sadinholland, I do try to check this board every day, except on some weekends I miss a day!  I'll be here frequently, so please don't hesitate to reach out and keep in touch, whether you are scared and having trouble, or having a good day and want to share.

Ninamom
Posts: 24
Joined: Aug 2012

I check the site every couple of days to see what is going on. I joined last year when my daughter was diagnosed with GBM. I read all your journeys and take your information to help us on this journey. Sometimes I would like to hear from people who have gone through this, and their loved ones battle has ended, just so I can prepare for the worst. I know it is hard during and after, but sometimes it would help us. Doctors can tell you things, but hearing from people who have walked in our footsteps would help. I tell myself now that I will continue when this terrible journey comes to the end, but who will know.

Thank you all for sharing your journey, and I pray for each and everyone of you that God will watch over you and keep this disease from recurring.

mccindy
Posts: 82
Joined: Jun 2013

Ninamom, I'm sorry to hear about your daughter.  GBM as we all know is the worst diagnosis.  What kind of treatments has your daughter had, and how is her progression?  I have acouple of friends on another site as well, cancerforums.net who have lost loved ones to GBM.  They stay active with the forum and are very helpful and understanding. 

Ninamom
Posts: 24
Joined: Aug 2012

Thank you for that information. I went on the site and have received information that was very helpful. I will now use both of these sites.

mccindy
Posts: 82
Joined: Jun 2013

I'm glad you've been able to reach out and get support.  Both sites are very good and have different types of people on them, I am glad to have both!

Kharris92130
Posts: 5
Joined: Oct 2013

Hi Ninamom,

 I also check a site called inspire.com.  The ABTA hosts a discussion group there, and it is much more active than this website.  There are many posts from those whose loved ones' battles have ended.  I wish your daughter the best of luck. 

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