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Update on my sister grade 3 AA- adjuvant therapy-

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

Hello,

My sister got diagnosed with a grade 3 anaplastic astrocytoma July 2011. I still want to scream and throw up when I write these words. Cancer stole our happiness. We are sometimes happy but never again that perfect innocent happiness that I knew and cherish so much.

She already had 2 surgeries, completed the radiation treatment and is now on the Temodar (even thought she has an unfavorable MGMT mutation and idh1, but the neuro-oncologists just do not have anything else to offer her -opinion from Hopkins, Duke, and MD anderson). The second surgery was to drain a huge cyst that formed in her brain after the radiation. She developed extreme vertigo and was bed bound for a while. It destroyed her physically and emotionally. But since then, the vertigo resolved. She started to go out again with her friends to eat sushi, wear her high heels. My husband and I took her to the Canyons, Utah where I skied and she wrote her novel and worked on her PhD thesis by the fireplace in our hotel. It was snowing and the xmas decorations were pretty with twinkling lights.

I am not comfortable with the wait and see approach.

Our next MRI is december 14th. And while I hope it shows that the tumor is in remission, I know that these tumors come back years later (except for a few cases, documented as anomalies in the literature). First I researched vaccines and realized that I missed the window where the tumor lysate is converted into a vaccine right after the surgery (UCLA, miami). Then I researched the generic vaccines (not made from the tumor but from the common peptides): the one ones out there are for the GBMs or for children or for the grade 2. My sister grade 3 was eliminated not because there is no benefit but because she does not fit the experiment requirements.

So then I turned to the world of oncolytic virus. I guess I naturally turn to immunology (vaccine, viruses) because they make sense to me; and I view chemotherapy as a toxic substance that is a substitution for a real cure, like chicory instead of coffee. Well none of the oncolytic virus showed any real curable levels. The ones that I am interested in, the New Castle disease or the VSV are not ready. When I emailed the leader researcher on the VSV oncolytic virus he said that the road block was a financial one. They were still trigging to raise money for a clinical trial no matter how many mice he cured of their glioma. So cures are not found or they are delayed because of financial reasons. MADDENING.

Finally I turned to three interesting substances:

DCA- University of Alberta. I waiting their results. The clinical trial is closed. If the results are promising, it would be great. DCA is a cheap cheap substance and would be easily produced.

Melatonin: ahhhh these Italian studies in the literature, so small in numbers but so compelling. My sister is on 15mg per night per my recommendation.

POLY-ICLC: I finally got in touch with Oncovir. It looks like I have to work really heard to get these injections part of my sister's regimen. POLY-ICLC has been used in healthy volunteers and Phase 1 has shown that it is a safe drug. In a small study, grade 3s lived an average of 6.5 years. (better than the 3 years average).

So my sister and I have settled in a routine. The holidays will be joyful (but not perfectly happy, I was listening to some carols and tears started to go down my cheeks as I realized again that my darling sister has brain cancer). We will get the xmas tree and we will toast to the new year and say that these dark times will pass, that the tumor will disappear and never never come back. And we will believe every word of it.

My love to you all

Julia

connsteele
Posts: 232
Joined: May 2011

Thanks for your updates, especially about the ongoing clinical trials, etc. I know the burden you feel, that never again will life seem carefree. I'm not really looking forward to this Christmas. Christmas is suppose to be this wonderful fuzzy Norman Rockwell scene, but I can't help but wonder is this will be the last Christmas spent with our son (age 34, dx 4-13-11 AA3, tumor debulked only). If I could, I'd like to fly away to some tropical paradise where Christmas is not celebrated.

Your sister is fortunate to have such a dedicated and caring sister such as yourself.This has got to provide her with the strength and hope that she will need to fight this.

Our son is due for his MRI on Dec. 15, so it looks like that will be a big week for both us.

May the results be good and provide us with a wonderful Christmas present.

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

I'm having a hard time with the holidays too. Connsteele, I also wonder if this could be the last Christmas....I fight hard against that thought. I have thought that same thing every Christmas since David was diagnosed in 2009. The first Christmas, Christmas 2009, we didn't even really do Christmas. We went to California instead for ten days and visited relatives and went to Disneyland. We bought five-day passes. Most of our family drove down to Cali together and we all stayed in a hotel together. It was good to do something totally different, but it wasn't easy. David was still regaining his strength and he was recovering from the radiation treatments, and his sister Christy was in the early stages of pregnancy and she was throwing up all the time. I got sick during the trip and wound up with double pneumonia. But overall, it was a good time and we were all really glad that we went. I think it was a good idea to do something totally new and different for Christmas.

This year is harder for us because David is so sick and we are so discouraged because.....well, because I guess we didn't really believe that David was going to have a recurrence. I mean, I knew that the doctors basically PROMISED us that it would return, and I was always so scared of that, but we were so shocked and devastated and just blown away when he had the recurrence in July. And it wasn't just the recurrence that stunned us.....but the way it has grown so very, very fast, and how it spread to both sides of his brain. It's been so hard to hold on to any real hope for a future for David. I'm just so heartsick all the time.....

We are such traditionalists....we have always made such a big deal out of the holidays, and especially Christmas. I have special ornaments that I bought for each of my kids, each year, from birth to about 13 years. Little gold ornaments with their names engraved on them, ornaments with their pictures, ornaments they made themselves when they were just little kids. So now I'm decorating the tree, digging these ornaments out of boxes, and they break my heart. I keep weeping while I'm trying to decorate.

David will also be getting an MRI and another BBBD procedure later this month....sometime right before Christmas. I'm not looking forward to the treatment, but at least I know that they can manage the nausea that David feels. I just wish that David felt better for the time between the treatments. He has felt pretty rotten this whole time, and now it's almost time for another round of chemo. I really am desperately hoping and praying that his MRI shows some improvement, because I don't know what David will do if it doesn't. I can't imagine him going through these treatments if they aren't showing some sort of benefit.....

Praying that we all get good reports from the upcoming MRIs. It would be the best, most wonderful Christmas present....

Love and blessings to you guys,
Cindy in Salem, OR

Raani01
Posts: 70
Joined: Mar 2011

Cindy,
Lots of people are praying for you and David for a good MRI. You will see deeds and gestures form your family and friends each day that give you peace in this difficult time.
Raani

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

Thank you......I am trying to focus on all the positives. David hasn't had those terrible headaches since his started the BBBD protocol. And no seizures....

I'm also trying to take it one day at a time. When I think of a year of BBBD treatments....it's overwhelming....

Thank you again.
Love and blessings,
Cindy in Salem, OR

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

Im sending you a big hug your way, I hope you can feel it.

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

Thank you so much. I don't know what I would do without the support of everyone on this site. I'm like Julia....I check it all the time, several times a day. Sometimes I just go back and re-read all the posts. It brings me a measure of comfort to know that others understand what this is like, and that people care and are praying for David.

Love and blessings and peace to you,
Cindy in Salem, OR

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

I totally agree about this site. This site and all of you are the reason that I am still sane. It is so nice to know that we are not alone in this. That we have eachother

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

Hi Tina, Cindy and Julia:

I agree with all of you. I check this site several times a day. It does give me great comfort to know that there is someone else out there that really understands our struggle and our pain and fears. I am so thankful I found this site. I also learn a lot about what other treatments and doctors that are out there. I also appreciate Julia's knowledge and her diligence. And I feel like Cindy - overwhelmed to try and process all of this information. But, I will keep sorting it out because I ALSO HAVE HOPE! God Bless all of you.

Edna

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

Hi Julia:

My heart breaks reading your post. I know exactly how you feel. We also have to do an MRI in December for our daughter. I dread it. I feel sick just thinking of the fact that my daugher, my beautiful, 18 year old daughter has brain cancer. Will I every accept it? I don't know. It makes me want to go out of my mind with fear! But, we live every day, one step at a time, doing what we have to and need to. She will beat this! I appreciate all of your knowledge when you write. I feel like you, I am not going to sit back and wait. I want to keep looking and looking for her cure. I know that is our role as her family. I wish you the best. My heart is broken too. As is your sister's and my daughter's, but they will mend and someday all of this horrible stuff will be behind us. I send love and God's blessings to you from Alaska.

Edna and Sarah

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

Thank you all for your replies. I check with this website often (too often sometimes for my own good). I hope that we all come out of this nightmare one day. I will never accept this diagnosis.

Curious thought: I emailed John Hopkins (were my sister's tumor was removed in July 2011) and I asked if there was any way I could create a cell line from her tumor. Now I know that it is a very very long shot, maybe scientifically impossible. Tumor cell lines are created from fresh samples. Her tumor has been preserved as a specimen, dehydrated, maybe in some kind of formaldehyde (I actually don't know because I am not a pathologist). The first answer I got was that it was impossible. And then I got another email saying that the lead pathologist was looking into it. I gave me a glimmer of hope.

The reason I would like a cell line from the the montruous tumor is that it would allow me to have a lab grow tons of it so that it can be tested ad nauseum. So down the line, if my sister needs another kind of therapy I can test it on a mouse first. Or maybe I grow a tumor lysate (like they are doing in UCLA) , show the tumor cells to my sister's dendrocytes (immune cells) and inject the modified dendrocytes into her as a vaccine. the modified dendrocytes are now programmed to seek out and destroy the tumor.

Maybe this whole brain cancer situation is making me loose my mind and transforming me into a mad scientist.

Julia

sadinholland
Posts: 237
Joined: Apr 2011

We are also going for an MRI on Dec. 22. I am a nervous wreck,as I am always weeks before his MRI check-ups. Please keep us in your prayers as well!

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

Just heard from OHSU. Actually, I called them because they never got back to me about when David would be treated again....but that's a whole other issue....

David is scheduled for an MRI on Wed. 12/14 and another course of BBBD treatment on the 15th and 16th. David never really got over last month's treatment. It's hard to think that he has to do it all over again in one week from tomorrow. I can feel the fear, dread, and loathing for the hospital stay and the treatments beginning to sweep over me....and that's only me. What must David be feeling?

I'm praying for David, for me, for you all....
Love and blessings,
Cindy in Salem, OR

connsteele
Posts: 232
Joined: May 2011

You and your son David will be in my thoughts and prayers on Dec. 15-16. May he have a successful and easy time during his treatment.

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

You are right....December is the month for MRIs for so man of us and our loved ones. I will be praying for you son too. Thank you for remembering David and for praying for him. It's hard any time, but it seems like the holidays bring up a lot of emotions......I wish we didn't have MRIs right now.....but I guess there's never really a good time for them....

Love and blessings,
Cindy in Salem, OR

allan9
Posts: 1
Joined: Oct 2011

Hi Cindy-I just read up on an article about the BBBD (from 88)-hoping all goes well

Edward A. Neuwelt, 39, a neurosurgeon at the Oregon Health Sciences University in Portland, is taking the most daring and direct approach. Neuwelt treats patients with brain cancer by injecting a sugar-rich solution into an artery. When the solution reaches the brain capillaries, it acts as a kind of crowbar, temporarily opening the tight junctions in the brain capillary walls. Into the breach Neuwelt then injects anticancer drugs. The barrier stays open for about 30 minutes. Once the effect of the solution wears off, the tight junctions are restored. Neuwelt's success rate has been impressive. In one type of brain cancer, a primary lymphoma, his preliminary results show that he should be getting complete remission -- defined as no tumors reappearing for at least five years -- in 40% of his patients. This would be a cure rate more than ten times better than that with most conventional radiation and chemotherapy. In all, Neuwelt has already performed about 1,000 barrier openings in more than 100 patients; one has had his blood-brain barrier opened 48 times. Most of the patients have experienced no permanent side effect

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

Yes, Dr. Neuwelt is the big dog here in the Pacific Northwest. Actually, I think he's pretty well known all around the country.They know all about him at NIH. He's definitely an expert in brain cancer treatments. We've had some issues because he was not at all positive about David's chances, but we understand that he's going by statistics, and statistically speaking, David is not in a good place. But we are praying for a miracle, and as long as David is alive, there is hope. I am feeling emotionally beaten down because David has felt so sick for a long time now, but I'm trying to get back on top of things emotionally.

The BBBD procedure is not an easy thing. It's basically an angioplasty--two of them, one done one day on one side, then the next day it's repeated on the other side. They run a catheter from his groin up thru his femoral artery, up to his aorta, as close as they can get to his brain, and they shoot mannitol (the sugar compound) into his brain, and then two chemos. The third chemo is administered via a port in his chest. This chemo delivery technique is believed to amplify the effects of the chemo 100 times. I think it may amplify the negative effects a lot too. David has to have shots to protect his hearing, and he has to be sedated almost to the point of being in a coma in order not to throw up. He is unconscious most of the two days of the treatments. Probably better that way.....

Dr. Neuwelt has made it very clear....abundantly, painfully, grievously clear---that there is NO CURE for David. He is just trying to buy some more time for him. Dr. N's head nurse/top assistant said that they are hoping that David will have a year while doing this treatment, and then hopefully another year, progression-free, after the treatment. She said, however, that there is no guarantee that this treatment will even help David. But it's the best shot that he has. I think they have had much greater success with CNS lymphomas than they have had with anaplastic oligodendrogliomas, which is what David has.

When David had a recurrence in July, it was shocking and terrifying how aggressively the tumors grew and multiplied. Dr. Neuwelt told us that he considers it "rapid growth." David has had a lot of MRIs in a short amount of time...some of them only two weeks apart because of seizures, tumor bleeding, headaches, etc. and each MRI showed definite new growth. It was heart wrenching to see all the areas that lit up, and to see the expression on David's face when we saw the MRIs......I can barely stand to think about it.

David will have his second BBBD treatment next week. They will do an MRI on Wed and that is when we will have an idea on whether or not this treatment is working. I am cautiously, warily, guardedly hopeful that it is helping because David has not had those terrible headaches that were sending him by ambulance to ER, and he hasn't had any more seizures. But it's hard for me to be optimistic because we've had a lot of nasty, unexpected surprises.

So...that's where we are at right now. I will post frequently next week while David is in the hospital getting treated.

Thanks for the info about the BBBD. I am always interested in what has been said and is being said about Dr. N and the BBBD.

Love and blessings,
Cindy in Salem, OR

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

Hi, Sadinholland.

I totally understand the way you feel about the upcoming MRI. I will be praying for a good report! And for peace and strength for you too.

Love and blessings,
Cindy

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

Dear Julia,

I always read your posts carefully and I am so grateful that you are always thinking, researching, brainstorming, asking, probing....I believe that's exactly how the cure will be found one day. I wish I had the background and the understanding that you do, and that I could apply myself to researching more diligently....I felt buried and overwhelmed when I tried to sort through all the clinicals etc. Right now we are putting our hope into the BBBD treatments. But it will only buy David a few more years, best case scenario. So absolutely heartbreaking...he's only 28....we had dreams of a wife, children, a happy future....dreams and hopes, just like everyone else here on this site....

I will keep hoping and praying for a cure/miracle for David. I would be thrilled and overjoyed if by some miracle, David turned out to be one of those anomalies that you mentioned.....I'm discouraged and scared, but I still have some hope....

Love, blessings, peace and strength to you,
Cindy in Salem, OR

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