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Not a good MRI, have some hard decisions ahead

connsteele
Posts: 232
Joined: May 2011

Well, yesterday wasn't a good day. David's MRI showed "dramatic progression" of the brain cancer. In the words of his NO "nothing we do is going to change the course of the disease." I asked him if the tumor is now a grade IV, and he said, "Oh yes. This thing is very agressive". In fact, to me, he seemed incredulous as to how much the main tumor had grown since his last MRI in December. On first look, he thinks we have three options: surgery, to try and debulk the main tumor. But he said at most, it would buy a few months, if that, because there are several satellite tumors that are progressing too. These are in areas that can't be surgically removed without causing more serious deficits, more than he has now, which are pretty bad. The second option is Avastin (and maybe another drug(s) added). The third option: do nothing and go for palliative care (i.e., Hospice).He also mentioned possible Gamma Knife. He said he will also research a clinical trial, but he thinks it's a remote possiblity that David will qualify for any because not only due to his other medical issues and all the meds he takes for those(Type 1 diabetes, hypopituary), but also because the tumors are in the cerebellum. For some reason, he said the majority of clinical trials exclude cerebellum tumors.

Our NO said that he is presenting David's case to the Tumor Board this Thursday. He will call us on Friday to relay the board's recommendation.

All along, our NO had been very vague about giving a prognosis and avoiding negativity. This time it was different. He wasn't brutal about it, but he didn't pull any punches about what we are facing. When he left the room, I heard him give out a big sigh. Like giving us this news was a hard thing for him to have to do too.

I think we knew that this day was coming, but not so soon. For now, I'm leaning to the Avastin. We are rather numb right now. I think David is too. Waiting anxiously for Friday to see what may lay ahead.
Connie

m/o David, age 34
dx 4-13-11 AA3, now a grade 4.

Raani01
Posts: 68
Joined: Mar 2011

Connie,
Sorry, I was hoping for a better news for your David also. But, don't give up. From my experience, Avastin can be a good choice. As you know, my husband's bleeding issues even before the use of Avastin made it to fail (he went through the surgery to remove the accumulated blood products to start Avastin). Because David does not have that kind of issues, there is a good chance for him with Avastin. I was amazed to see how much the tumor shrunk with one infusion of Avastin for Jacob. Hang in there Connie, I know it is hard at the time, But as Cindy always says, we just have to trust that tomorrow will be better.

With prayers,
Raani

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

Dear Connie,

I am sorry that his MRI showed progression of the tumor. I think Raani is right, Avastin probably would help you and your son; but you would have to time it right if he undergoes surgery. If you choose the aggressive route, surgery coupled with gamma knife is an option. There is also a new way to target the tumors with HEAT. It is a laser and it gets to places inaccessible to surgery. Here is the link:

http://visualaseinc.com/

Theoretically, you can use this laser heat technology to target the cerebellum tumor. Between, regular surgery, gamma knife and heat laser your son's tumors could maybe targeted. I don't know how much side effects he would get from all these treatments.

But ultimately it is your son's decision. If he decides hospice, we will be there for you to help you with the grief.

Love,

Julia

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

I never really know what to say in these kind of situations other than I have all of you in my prayers! Please keep us posted as you can, and never lose faith! Extra prayers going out to you, David, and the entire family!!

Michelle

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

I am so sorry to hear this news. My prayers are with you...

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

Dear Connie,

Early in the morning, I grabbed my iPhone and went outside in the rain in my PJs with David's puppy to give him a potty break, and I read your post about David's MRI results. I stood crying in the rain. It breaks my heart to think about the doctor saying things like the tumor is very aggressive, dramatic progression, etc. I cannot imagine how David and how you must feel to hear these things. I so wanted the MRI to be a good report. It makes my stomach hurt to think about what you are going through right now.

I'm thinking about you and David a lot, and praying for strength and peace for you. I hope that the tumor board will have some ideas that might be helpful and give you and David some hope for better days. Please let me know what they recommend for your next step. I will be praying HARD for you and David.

With all of my love, and blessings to you too,
Cindy

Devman
Posts: 5
Joined: Jul 2011

I am somewhat surprised they have not removed the tumor and proceeded with Gamma Knife (which I swear has been the answered to my prayers) The Gamma Knife stops the spreading. I understand some tumors are to aggresive for the Gamma Knife, but if there is a possibly for you, this is a very simple outpatient procedure, they are in and out within 4 hours. My 22 year old son has GBM grade 4 dx 10/5/2010, we have had two surgeries and the Gamma Knife, radiation and Temedor. He just had another clear MRI yesterday, his brain looks great and I swear by the Gamma Knife, I believe it will prolong his life.

I am so sorry for you and your family, we ALL understand how difficult this is. I wish you the best.

Fight on and dont give up hope.

connsteele
Posts: 232
Joined: May 2011

The possibiity of gamma knife was mentioned by Dr, Cavaliere on Monday, along with clinical trials and Avastin alone or with another drug. But apparently, the Tumor Board that reviewed his case yesterday didn't think our son would benefit from gama knife. He does have one very large main tumor and several satellite tumors that are growing too. Truthfully, I am very leary of any more radiation to the brain, even in the form of the Gamma Knife. He has had two separate rounds of radiation and the last one about killed him, even at the reduced dose.
At this point, I just have to trust our NO. Are we giving up? I don't know. Somedays, like today, I am just so tired of the fight. However, I will call his office on MOnday and ask the question. It never hurts to ask.

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