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Repeated Radiation

Raani01
Posts: 68
Joined: Mar 2011

I am starting a new thread to hear the experiences of you who went through a radiation treatment second time. I wanted to learn as much as possible before I make the decision for my husband. Jacob has a recurrent Oligodendroglioma grade 3 on the left frontal lobe. He had the dx in 1997 with oligo 1 and went through radiation in 1998 and temodar chemo (no surgery, because all 4 oncologists we consulted said no to surgery because of the tumor location). He has been leading a normal life followed with MRI every 6 months with two biopsies and temodar chemo now and then. In 2008, the tumor level changed to Oligo 3 and he has been continuously on temodar followed by CCNU for about five months. In December 2011 he went through a surgery to remove blood/fluid that was accumulated in the brain. Then, in January this year he got his first infusion of Avastin and which resulted in an acute bleeding in the brain. Now, Jacob is very weak cognitively .We met with our NO last week and he was saying that a second radiation is the only hope for Jacob ( not gamma knife or high dose at one time , he says recent studies showed promising outcome if give low doses over a week time as second round of radiation).

Our NO called me over the phone today and said that the tumor is very stable in the MRI they took yesterday compared to the one they took on Jan 23rd. He said he's scheduling radiation treatment for Jacob in 2 weeks Please share your thoughts/opinion/suggestions freely; good and bad. Don't feel shy to say the facts and I promise I will look at it very objectively. I just want to make sure I did my best for my husband (he has been making the decisions until about 6 moths ago so it was not this hard for me. Now he can't and I have to do it for him which I find it very hard emotionally. Thank you in advance for all your support.

Thinking and Praying for all who is fighting this disease with me and Jacob.
Raani

I am listing excerpts from our phone conversation today to get an idea of my current situation :-)

Me: Dr, I am not comfortable with a second time radiation after hearing the experiences of my tumor friends. Because Jacob's cognitive ability is affected very negatively after this bleed, I am very concerned. Aren't we taking a big risk with side effects?
NO: Mrs...I haven't said there are no risks with a repeated radiation. There is nothing else I can offer you at this time.
Me: Can we consider any clinical trials?
NO: There is no clinical trial available here at Mayo clinic for Jacob.
Me. How about clinical trials in other facilities, dr?
NO: May be there is, but I can't do it for you, you have to find it yourselves. However, I highly doubt any available because of your husband's bleeding issue.
Me. Sorry dr, I didn't expect you to do that. I am sharing my thoughts and I would appreciate any helpful input/direction you may have for me.
NO: Sure, sure, how about this. I will schedule an appointment with a radiology oncologist (note; he refers to the dr that will do the radiation treatment for Jacob) and also with the Dr. T... at the University of MN (note: referring to the NO who has been treating Jacob until we went to Mayo in April 2011). This will give you an opportunity to learn about the clinical trials University of MN doing. Also you might come up with some food for thoughts after discussing with them.
ME: Thank you dr for this great help. Can I make an appointment with you to discuss after these appointments to make the final decision?
NO: Sure, I will find a time to meet and discuss in one week.
Me. One last question dr. If the tumor is stable, can we wait for a month to give Jacob some time to recover more.
NO: I don't recommend waiting more than two weeks. Even though the tumor looks stable now, it will grow, in my opinion. Waiting for a growth to treat the tumor is not my approach.

connsteele
Posts: 232
Joined: May 2011

I wish I had some good advice for you. You are to be commended for trying to get all the information you can for your husband...you are a good advocate for his care. One thing that doesn't sit well with me is that your NO wants you to confer with the radiation oncologist who would be treating your husband. If you do meet with him/her, I would brace yourself for a big sales pitch.

I think I've given you a breakdown of our son's experience with radiation, right? If not, I'll try to make it brief:

Age 8: had radiation to whole brain and spine, with a boost to back of brain where tumor what located (posterior fossa). It was hard on him, lost his appetite and weight, took anti-nausea med. He did bounce back, which I attribute to his youth and good health at the time.

Long-term effects of the first radiation: hypo-pitutary, which means he takes hormone replacement for thyroid and cortisol. It also caused him to be growth hormone deficient. He started taking growth hormone when he was ten, taking it for three years. He then was diagnosed at 13 with type 1 diabetes, which they think was caused by taking the growth hormone. So, the GH treatment was stopped and as a result, his adult height is 4'9".
He also has a mild learning disability, which qualified him for special tutoring and disability services in school. With that support and his hard work, he went on to do well, even being inducted into the National Honor Society and graduating from college.

Jump forward 26 years later (age 34), and he had a grand mal seizure, which prompted the trip to the ER and the beginning of this latest nightmare. After his surgical biopsy, he was diagnosed with AA3 in the same location where he had the radiation boost. All three docs (neurosurgeon, NO, and radiation oncologist agreed that this second brain cancer was caused by the radiation he had when he was 8. And we were told that his cancer would never go away, that he would be on treatment for the rest of his life in order to "slow things down."

So, when his neurosurgeon referred him for radiation , I was really resistant to the whole idea. Afterall, all of his late effects were the result of the first radiation. But our son said he wanted to fight with everything available, so we honored that and went to talk with the radiation oncologist. I have to say, the radiation oncologist (RO) was very sympathetic. Said we had the choice to say no, but he recommended giving David a reduced dose of the standard treatment. He felt that would be safe since so much time had gone by since the first radiation. I am so glad he did, because I think if David had gotten the full dose, it would have killed him. David got 2/3 the standard dose of radiation. After about the second week of the five week course, he went down hill fast. Couldn't walk, speech really bad, mental status declined, and slept all the time. It got so bad that the RO feared it was tumor progression instead of radiation swelling. David was put on 24 mg of Decadron, which helped some but he was still a mess. I found out later that the chemo doc and RO were both considering Hospice "if he continued to deteriorate".

While he is much improved, he has never been the same since his radiation, but it is hard to say if it is due to the radiation or tumor effect. He has balance, speech, and fine motor deficits and some loss of mental status. He has never had a clear MRI since diagnosis. And our latest MRI shows significant tumor progression.

In conjunction with looking for a clinical trial, have you thought of getting a second opinion from some one of the big names in brain cancer? I went to a brain tumor support group last week, and a woman there had sent her husband's records and scans to docs at MD Anderson, and they reviewed his case and gave a second opinion. They didn't have to travel there. We are considering the same thing for our son. It's not that we don't trust our son's NO, he is wonderful, but like you, I want to think we are leaving no stones unturned in seeking out the best treatments. I don't want any regrets.

Good luck to you and your husband.

Connie

Raani01
Posts: 68
Joined: Mar 2011

Connie,
Thank you very much for sharing your experiences, suggestions,concerns etc.etc.You are helping me a lot. I am thinking about getting another opinion.Could you be able to find out from the woman in your support group what to do as first step to contact MD Anderson? I have only 2 weeks to make a final decision.
Are you hanging in there? I am waiting to know what the feedback from David's NO. Please be strong at this very difficlut time. i am sending my prayers and positive energy on your way.
Raani

connsteele
Posts: 232
Joined: May 2011

I would like to help you, but not sure what the first step is either. As for the woman in the support group, I don't know her name (it was her first time there, and just my second). And I don't think that the faciliatator of the group is at liberty to give out names (privacy issues). But I'm thinking that you can call the NO department at MD Anderson and ask to connect you to someone who could get you some information about second opinions. The phone number on their contact info page is : 713-792-2883.
I got the number from the following link on their web site:
http://www.mdanderson.org/education-and-research/departments-programs-and-labs/departments-and-divisions/neuro-oncology/contact-information/index.html

Also, I believe that another person who posts to this blog, alutiiqmom, is going with her daughter to MD Anderson in March for a second opinion. I bet if you start a new thread, asking for alutiiqmom
to help, you would get a response.

Good luck. On one hand I think we should get another opinion, but on the other, we are just plain tired. We feel our son is getting good care so we will go with that. But I would very much like to know if you do get a second opinion at MD Anderson and what it the NOs say there.

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