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Follow-up on DavidO

cdolive4
Posts: 34
Joined: Sep 2011

Hi to all -
I don't post very often, but I definitely keep up on the board and pray for all of us as we go through this difficult journey. My husband, Dave, age 51, was diagnosed with a GBM last March. They were able to resect it, and he has undergone the standard of care, although he hasn't been able to complete very many cycles of Temodar.
The doctors think that his tumor may have returned, but they can't differentiate between recurrent tumor and the necrosis which he had removed last August, which showed no sign of tumor. They are going to put him on a clinical trial which will consist of a biopsy next week and a possible virus injection as well. He can still have the mass removed at a later date if needed, but we're going to see what the virus does first.
We've done a lot of research and put a lot of prayer into it, so we're feeling relatively peaceful and are hoping for the best. It helps a ton to remember that the Lord is ultimately in charge, and that all things will be done according to His will. The hard part is remembering that He does have a plan, even if we dont always understand it.
I will update when I get a chance, and wanted you to know that I'm hoping for the very best possible outcome for each of us. CindyO

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

Hi,

My thoughts are with you and I hope that the protocol works. Could you please tell us which virus and which institution is doing this protocol?

Thanks

J.

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

Dear Cindy,

Thank you for the update. I had you and your husband (and Michelle!) on my mind and heart and in my prayers last night and this morning.

I'm very glad that your husband qualifies for a clinical trial. I don't know much at all about the virus injection clinicals but I've had several people tell me that I should look into them. Right now we are participating in a clinical involving the BBBD, which has been very up and down. But we had a great result, so we are staying the course.

I personally believe in investigating and participating in clinicals whenever possible because I want to think outside the box. I don't like the results that people are getting inside the box, if you know what I mean. So I think it's great news that your husband will be participating in that clinical trial.

I will keep on praying for you and your husband...for healing, strength, and peace.

Please post whenever you can and let us know how you and your husband are doing.

Love and blessings to you,
Cindy in Portland (still) Oregon

cdolive4
Posts: 34
Joined: Sep 2011

Thanks so much for your good wishes, guys. We really appreciate them. Julia, the trial is the Delta-24 at MD Anderson. We'll update once we know more. CindyO

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

I looked it up. It looks very promising. I am so glad your husband is in a clinical trial at an excellent institution.

Raani01
Posts: 68
Joined: Mar 2011

My husband's NO mentioned virus injection during the talk. My husband has AA3 and Avastin failed.Can you please little more details on this virus injection?
Thanks,
Raani

cdolive4
Posts: 34
Joined: Sep 2011

Hi to all -

Especially to Cindy - I have noticed that you've been quiet lately, so I hope things are going okay for David - I know it's a very fluid situation, but I'm hoping for the very best for you.

My Dave's surgery was today, and he came through it very well, and we feel blessed. Unfortunately, they did find recurrent tumor cells when they did the biopsy, but they did go ahead and inject the adenovirus and proceed with the clinical trial. They will monitor him very closely to see how things go, but are definitely onboard with removing the mass if they see a need to do that.

We appreciate the support and hope that everyone else is doing well. Raani01, I don't think your husband can qualify for many clinical trials if Avastin has failed him. You might want to check out the virtualtrials.com website run by Al Musella. He correlates all kind of clinical trials there as a service to the brain tumor community. I wish you luck with your husband - I know it's a very difficult place to be. CindyO

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

Hi, Cindy.

I'm so glad that your husband is doing well after surgery. And I am really glad that they started him on the clinical trial without wasting any time. I will keep praying for you guys and I'll keep watching these boards for your updates. How exactly does that clinical work? Do they inject the virus one time, or will he need several more doses? If so, how are they administered? Is there a link or a website where I could read more about your husband's particular clinical trial? I'm thinking that there are several different clinicals involving viruses....or maybe I have that mixed up with vaccines? I don't know anything about either type of treatment and I really need to put more effort into educating myself. I think I am counting too much on the BBBD alone, and I don't have a good "plan B" or "plan C" in mind....

Thank you for thinking about me and David and for asking about us. We are doing really well. Once we left the hospital and got home, David started making some real progress in recovering from that whole ordeal. We have had a few rough spots but we got past them. I feel like I'm constantly posting all my drama so I thought I'd give you all a little break from me haha.

David went outside to get his camera out of my car a few days ago, and then he decided to take a few pictures. I thought it was great that he felt up to it. He went outside by himself, and he squatted down to photo a flower in our neighbor's yard. He lost his balance and pitched forward into the mud. He could't get up. He crawled over to my truck that was parked next door at my daughter's house and tried to pull himself up but couldn't. I came outside after about 15 minutes and I saw him on the ground and I just totally panicked. I screamed, "Oh, my God! David!" and he called back to me, "I'm okay...I just can't get up." I ran over to him and tried to help him but his legs were totally powerless. I called my husband and he came over and the two of us were barely able to get David back in the house. He had lost control and soiled his pants and he had stool packed in the huge wound that the drs had made last week to drain that abscess. Well, to make a long story short....I cleaned him all up, even his wound, and he's okay. He has to use a walker because he's just so weak and trying to get up really drained him. It was pretty demoralizing but mentally, David actually bounced back pretty quickly. He was joking about falling down with some family members who dropped by later that afternoon. David is really amazing....

We went up to OHSU yesterday and the doctors were very, very pleased with how David is doing. His wound (the drainage hole) is healing really well, even with David being compromised from chemo, etc. They said I'm doing a fantastic job with dressing it, which is like a miracle, considering how awful it is to me to have to dress it...I mean, it's BAD. I have to stuff gauze down inside that gaping hole, following the surgical track...anyway, I'm doing it, and I'm also doing the 2x a day blood thinner shots. Hating it, but it has to be done, so I do it.

So....they said David is done with the IV antibiotics, so we don't have to spend 3+ hours every day, driving to an outpatient clinic. We had to go to a different town because Salem's clinic was full. We were supposed to go one more time today so David could get his port de-accessed, but David tore the access tubing etc. out in his sleep last night. That upset me because i'm totally paranoid about infection...so we went to the clinic today even though the access lines were totally out of his port. I wanted them to check on David. They said that everything is fine and we don't need to come in any more.

David is really weak but weakness and tremors are side effects of several of the medicines he's taking. He is on an oral antibiotic for ten days, then he should be okay and able to do a BBBD again. David and I are both having a very hard time with the thought of another BBBD. I just can't think about it right now.

I am weird. Everything is going good right now, but I am having a hard time. I am crying a lot, mostly in the shower. I am very nervous and jittery. I bought an expensive, high-end baby monitor and I put it in David's room. It has a video feed....with infra-red for night vision too. I am so glad that I have it. I can check on David all through the night. At first he thought it was kind of creepy haha :) but then he said go ahead and use it. I only turn the video on when I hear any questionable noises. It's just so great at night when I hear a thump or something, to be able to tap a button and see that he is okay and not in the throes of another seizure. Before I had the monitor, I would leap up and dash in his room several times in the middle of the night, and I'd just about have heart failure.

Speaking of seizures...when I go to bed and shut my eyes...I see that whole incident when David had that terrible seizure in my mind. It messes me up. I'm having trouble sleeping and my chest feels really tight. I hate that I am this way....David is the one who had the seizure and he doesn't keep having issues about it like I do.

I went grocery shopping today with my daughter Christy. She told me that when we were first in the hospital, in ER, waiting for David's surgery, that when I went out to talk to our family in the waiting area, that David said to her, "I think I am at the end of my run this time." I was shocked that he had said that, and it upset me so much. I just started sobbing so hard, right in the fruit and vegetable section. The store was so crowded and I couldn't see because I was crying so hard. My sweet daughter put her arms around me and patted me and said, "It's going to be okay, Mom." I bet she was sorry she ever told me. It took me quite a few minutes to get a grip but I managed and we finished our shopping and went home. Some friends brought over a lovely dinner and we all ate together and I felt better.

My husband is off work tomorrow and he's going to spend the day with David so I can go for a ride on my horse. I have such a longing for the peace and solitude of the forest. It's like a physical craving. My heart is yearning to go deep in the woods and just lose myself for a few hours.....

So that's where we are at. When David finishes the antibiotics and has a little more strength, we will have to face another round of the BBBD. I need to be grateful that we have this opportunity instead of fearing and dreading it. I'm working on it.

Thanks again for reading another one of my epic posts. At least I gave everyone a little break for a few days! :)

Love and blessings to you all,
Cindy (back home) in Salem, OR

Radioactive34's picture
Radioactive34
Posts: 387
Joined: May 2011

Thanks for the updates. We post here because we have a freedom we don't with family and friends. Hugs and prayers. I think of everyone on here all the time.

connsteele
Posts: 232
Joined: May 2011

Thanks for the update Cindy. Been thinking about you guys. We went to a brain tumor support group last night. Not a big group. Our son David went with us, but he said it was a big waste of time. Probably because no one there was his age (34). My husband didn't feel it was much help either, but I found it helpful. Mainly because it made me feel that we are not the only ones dealing with this terrible disease. And that's how I feel about this discussion board. And like Raani said, I've learned so much about brain tumors and treatments from all of you.
Prayers and hugs to you and all of us on this list.
Connie
m/o David, age 34
dx AA3 4-13-11
radiation/Temodar completed, 5 cycles of 5/28 Temodar, now on CCNU/procarbazine

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

Cindy,

I find myself looking on here for your posts. You are not burdening us with your posts, I actually feel a sense of peace knowing you are there posting and keeping us informed. Please do not feel that you are posting too much! You are a very strong woman, and sometimes it helps to get your feelings out. We are here for you so please never feel differently. I hope you enjoyed the ride on your horse! Just to get away and get lost in your own little world for a little while. Recharge your batteries! Glad to hear David is healing better than expected! God is Awesome!!!

Thoughts and Prayers,

Michelle

cdolive4
Posts: 34
Joined: Sep 2011

Cindy,

I'm so glad to hear that David is doing well, although you are definitely still having some dizzying highs and lows on that intense roller coaster ride we're all on - wow. I hope you get to enjoy a beautiful day high in the forests of Oregon and can drink deeply of the beauty there.

I understand the trauma of seeing David go through the things he's been through, particularly the seizures, and I wanted to make a suggestion. The timing may not be right (as in, you're too busy at the moment), but I have a very good friend who is a family therapist and she (and many other) therapists use a technique to help people deal with trauma which is very successful. It's called EMDR, and it specifically helps the brain process trauma in a very simple but effective manner. The client still remembers the event, but is able to move past the emotional upheaval associated with it so that they are no longer "haunted" by it. EMDR has been around a long time, has been proven to be very effective, and there are nationwide therapists who use it. If you're interested, you could look up information about counselors in your area or I could give you more info as well. Just something to consider.

As far as the details of Dave's clinical trial, treatment plans are so individualized that I'm not sure it would be helpful to give you all of the details of his treatment. It sounds like you have more of a need to gather general information, so I would suggest going to the virtualtrials.com website hosted by Al Musella. He's an amazing man - a chiropractor whose father passed away from a brain tumor, so he's dedicated himself to providing updated information on clinical trials to the brain tumor community. He's very involved with the yahoo brain tumor groups as well, and is a font of information for those searching for more information on clinical trials. You can email him directly and he will answer questions for you also.

I hope you get to enjoy a beautiful day of peace and rest, and that all continues to go well with David. Never feel bad about venting to the board - that is it's purpose. You also give far more support than you could possibly have received, and your posts bless many lives - probably many more than you'll ever know. Thanks for leading the way for the rest of us. ;-) CindyO

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