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Frustrations -update on my sister dx anaplastic astrocytoma

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

Dear all,

I did take a break from posting just because I though I could tame my addiction regarding this website. But I follow your posts closely. each one of you is dear to my heart. I think of you every day whether or not your love one is still alive or not.

I have been desperately searching for a decent immunotherapy clinical trial my sister can participate in. The last one was involving alloTCL in the Omaya reservoir. But once again we were turned down because there is no recurrence. My sister said to me:

"I feel like everyone is just waiting for me to have a recurrence; just doing MRI after MRI, waiting. What about doing something to prevent a recurrence?"

And I agree with her. Because we both know the numbers: that more 90 percent will get a recurrence at some point. I am sorry if I upset some of you by pointing such an awful truth. But I know the numbers and this is why I think chemotherapy just does not cut it. We could be some the lucky ones and escape the odds. But meanwhile dear people I know are further along in this road and my heart just bleeds for them, knowing what they going through. Could something else be done? Is the treatment out there but because of FDA regulations we don't have access to it? Are doctors afraid to take a risk because they rather have the cancer kill our love one rather than the treatment?

My sister has anaplastic astrocytoma diagnosed in August 2011. Thankfully she is a full functional adult writing her PhD and going out with her friends.

After surgery and radiation, she is getting (while still on chemo) MRI spectroscopy on top of getting the regular MRI with and without contrast. While the MRI are stable and not showing tumor recurrence, the choline to creatinine ratio of the MRI spectroscopy has been climbing. Normal brain has a choline to creatine ratio of around 2 to 1. She had several peaks, some as high as 9 to 1.This can represent more cell turn over i.e cancer cells. My sister -the physicist- actually understands the graphs better than I do, and she took the lead when talking to her doctor. However the neuro oncologist is puzzled because my sister does not have any increase in the blood flow (a definite sign of tumor). We were told it could be a calibration error of the machine and my sister will get the MR spectroscopy repeated as soon as the machine are recalibrated. However if it shows the same thing, then she will be moving to having MRIs every month instead of every 2 months.

I hoping that the choline to creatine ratio is back to normal. Meanwhile my sister is still living to to the fullest. A friend and her are going to Denmark and Russia in July. They should have a grand time.

We are going to have to stop the Xeloda (her WBC count and platelets were trending down); xeloda was the chemo experimental pill that we decided to add on top of the Temodar because the genetic analysis of the tumor showed a sensitivity to it. But meanwhile, her Neurooncologist agreed to inject her Omaya reservoir with chemo; it will not be absorbed by the brain but will at least attack (in theory) the cancer cells on the cyst.

"The side effects are minimal for an uncertain benefit." said her neuro-oncologist. He is a wonderful man by the way. He spends over an hour with us at every appointment. I could not ask for a better man. I am just afraid that no one can stop brain cancer not even the beast doctor in the world.

The last thing I asked him was if anything could help enhance the Temodar and he said yes Poly-MVA. Has someone heard about it? I was looking for POLY-ICLC a few months back and could not find a pharmacy that would sell it. But apparently poly-MVA (lipoic acid) is easier to find and is seen as a safe supplement by the FDA and therefore is not a presciption.

Overall, I have not accepted my sister's diagnosis; I will never accepted it. Life as know it stopped making sense the day she was diagnosed. I have not cried as often but I am as angry.

We planted a small garden in the backyard and planted tomatoes, corn, cucumbers, pumpkins and everything is growing so fast!

with lots of love,

Julia

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

Hi Julia,
I think of you and your sister often. I know your feelings all to well. Im glad that your sister can go on that trip and enjoy her life. We didnt get much of the wait and see with the MRI's. It just went straight forward at 100 miles an hour non stop, that damn brain cancer. I miss my sister so much. Enjoy every minute...
Im trying to get myself together, and like you became addicted to this site.
One thing im doing right now to try to bring some peace and beauty to my life by rooting roses from my sisters garden, so that some day I can look in my backyard and see all the beautiful roses that my sister loved. Her favor was sterling silver a purple rose that is so hard to root. Well to my surprise just one of those got a new leaf on it. Made me smile, my sister sent me a gift from heaven....
Brenda

connsteele
Posts: 232
Joined: May 2011

I think of you all often too, even though our son lost his battle with AA3 seven weeks ago. Sometimes I feel like I shouldn't post to this list anymore, because this list is for cancer survivors. But for over the past year I was on this site, at least once a day, and gained so much valuable information about what is out there re: treatments and new therapies. Most importantly, I came to see eveyone on this list has fellow travelers on the journey. So, I still wonder how everyone is doing.

We are doing OK...miss our son terribly but striving to adjust to a new normal.

Julia: Your sister is so fortunate to have such a knowledgeable and strong advocate as yourself. And I am so glad that she can live life to fullest.

FortheLoveMySis: Roses...What a wonderful gift from you sister!

Connie
mother of David,
dx AA3 4-10-11
passed away 4-14-12, age 35

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

Hi Connie,
I am so sorry about your son. I don't think you should feel bad or weird about posting on this site. Even though David has passed, you are still part of this family. Like you said in your post, you are here to see how the people you have connected with and cared about for so long. My daughter is fighting really hard for her life right now. Her tumor continues to grow and she feels her time slipping away. I will definetly need all of you when things really start to progress. I know that I am glad that you still post :)
gotta go now. Take care

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

Hi, Julia.

I follow Kat on FB and I was concerned when she did not post the results of her MRI. I kept checking every day, and I could feel my anxiety building. I'm really glad to hear that there is no tumor recurrence. I can understand your concern with the spectroscopy results but I am still really glad to hear that the blood flow hasn't increased and that she doesn't have any tumor growth.

I just don't have the heart to really write much about David. It's all heartbreak and sorrow. We are basically living each day, one at a time. Right now he and I both have pneumonia. I'll get over it, but I'm very concerned about David. He is so weak that he cannot cough. We found out about the pneumonia when we had to go by ambulance to the hospital for a seizure on Tuesday night. He didn't recover from it like he normally does. It turned out that his blood sugar plummeted from the seizure and it was affecting his brain. Very scary. So when we went to the ER, they did a chest X-ray and told us that David had a "lesion" in his lung now. A tumor in his lung. And they thought that the main tumor in his brain looked larger. When I pressed them for details, they said that it might not be a tumor in his lung....it could be pneumonia. Apparently X-rays are not very good diagnostic tools. Anyway, to make a long story short, David's NO does not think that it's a tumor. They believe it's pneumonia. Seems strange for me to be relieved that he has pneumonia....but it's better than a met to his lung.

We haven't heard back about the tumor size. When I asked the ER doctor if it was bigger than the last time, he said that they didn't have anything to contrast their CT with. So that was basically no help. But it really shook us up.

David is so weak. He cannot walk more than a few steps at a time. He's taken several bad falls. A lot of the time, it's too much work for him to lift silverware to his mouth. I need to feed him. He sleeps a lot. His mind is clear and he totally knows what is going on. His body is just giving out on him.

I worry about the level of care that David needs and if I can keep this up for an extended period of time. I wondered if I should make arrangements and schedule people (family) to come on certain days and stay with David so I can run errands, etc. I called our NO and talked to the non-dog nurse. I asked her (because I'm a total fool and I guess I am not miserable and grief-stricken enough) if David could live at least another year. She said no. She said that it's really hard to tell and that they are wrong a lot of the times, but she would think that he had maybe four months. I was shocked and appalled and I felt this blackness just come over my heart and soul. She said that if we wanted to stop treatment, they would be on board with that. I hate that she said that. In fact, it pisses me off big-time. I will tell her if we want to stop. She doesn't need to suggest or offer it. David says he wants to fight, that he wants to do the chemo and Avastin. I told her that David will probably keep fighting and doing treatments until he dies. She was like, "well.....okay...." Anyway, I do not accept four months. I just do not believe that's all that he has. I think that this is another time that they are wrong. I should have never asked.....

We have had to postpone David's MRI because of the pneumonia. I need to know if there has been any results from the carboplatin and the Avastin. If it's not working, then I think we should consider another type of chemo. How can we even think of not doing treatments when we don't even know if the carboplatin and Avastin are helping or not?

So...today is my little granddaughter's 2nd birthday. My son Dallas planned a big party for her at Chuck E Cheese. David said that he wanted to go. I thought he was being totally unrealistic but I always do my best to honor whatever he wants to do. So my husband and I got him out to the car, packed up his wheelchair, and we went to Chuck E Cheese. Everyone was so glad to see David, and I think he actually had a good time. He ate a few pieces of pizza and a piece of cake (ugh, blood sugar issues...) and he watched all the kids play and have fun. It really wiped him out and we could barely get him back in bed, but I think it was worth it.

Thanks for listening. I think of you guys all the time and I still check this site several times a day. Connie, please keep posting. I really miss your posts, and I hope that you are healing from the loss of your David. Momsworld, I am so sorry for where you are at on this journey. I pray for you and your little girl all the time. Brenda, I do so much with my sister.....she is my best friend and my faithful supporter....and it makes me think of you and how much you love and miss your sister, and I am so sorry for you pain. Julia, I am so glad that Kat is living life so fully. I understand your fear and I can relate to your desire to help your sister and to find something that will make a difference for her in this battle. What a blessing you are to your sister.

I'll be here, lurking, reading posts, thinking of you all....

Love and blessings,
Cindy

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

I dont like that non dog nurse. She should not throw a number out there like that. She doesnt know. I have family members ask me that question a lot. I never give a number ever...I can usually tell if they arent going to be there my next shift,I may tell a family member if that was my family I would stay the night, and they can if they would like to, and thats my nice way of saying they arent going to be there in the morning. And sometimes Im wrong. I just had a guy in his 30's last week, the doctors kept saying a day maybe two, but he had other plans. He went to a place on hospice, I think he might still be there, he just wasnt ready...
I think about David and you every day. Im glad he went to the Birthday party. I hope he is able to go to the wedding too. Would love to see a picture of him with his sister on her big day. Prayers and hugs going your way.
Brenda

Beckymarie
Posts: 358
Joined: Aug 2009

Cindy,

Again, so sorry for what David and your family are going through. Reading your post brings back alot of painful memories. Yes, you should get as much help in as you can arrange...not just for David, but for you and for all those who love David and want to spend time with him. You have been so strong but it is time to get some help.

We had Hospice involved for the last 4 weeks of Terry's battle. They were wonderful. I can only describe it like being at the helm of a ship in a horrible storm and having someone come in and say, "I'll take over." They were helpful, respectful, I could go on and on. They ordered all the necessary equipment, dealt with the doctors, ordered and had meds delivered to the house. I was able to focus more on my time with Terry and less on the time consuming, running around tasks.

I wish you some level of peace during this time. I think of you often.

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

my dear friends for all your support; I think of you guys and your struggles every day. My sister's diagnosis is all I think every day; I would do anything to save her life... here is an example of how crazy I am (please don't judge)...
My husband and I are expecting our first child; I welcome with open arms some happiness in my life after such a horrendous year. This first born is a dream that we both had to postponed many times in our lives because mostly of our long schooling (grad school then med school and then residency etc..). But even during this pregnancy bliss I am trying to find a way to collect during the birth (so that no harm can come to the child) BOTH the cord blood and especially (rarer) the amniotic fluid. Amniotic fluid contain stems cells a thousand times more potent than cord blood and that can be differentiated in... you guest it... brain cell. It is very very long shot since we don't have the medical technology yet to treat a a brain cancer patient with stem cells from amniotic fluid but... why not? So everything always comes back to my sister. Always. Always. Always.

Dear Brenda, I feel your pain for your sister because this could be my pain in the future. Thank you for your kind words. Connie, momsworld thank you for writing to me. And Cindy, darling Cindy, I just wish there could be a magical wand that could bring back David to healthier state. Little is a consolation in moments like these, but remember you make his life the happiest it could be with a diagnosis like that. All the happy moments David experienced since his diagnosis, you (directly or indirectly) made it happen. He is very lucky to have you.

Julia

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

Oh, Julia....congratulations! I'm so happy to hear that you are expecting a baby! Kat will make a wonderful auntie...there is something so special about having a baby around, and then little kids. My four grandkids...David's nieces and nephew....are one of the few things that still brings a smile to David's face. They are little rays of sunshine with their innocence and their cute little ways. Having kids was the best part of my whole life. :)

Thank you for your kind words about me and David. Tonight we had our weekly Sunday dinner, and David was able to get up and have dinner with us at the table. Afterwards we all piled in his room and laid on his bed with plates of red velvet cake. The kids were in and out of the room, making us laugh, and I teased David about his OCD in the way he washes his hands. Long before he "got sick," he was always fastidious and he washed his hands, one finger at a time, with a circular motion around each finger, making sure that he got all the way to the joint where it connects to his palm. He still washes his hands that way. I even got him to laugh about it. So we really had a lovely, sweet evening together. I cherish every good moment that we have. And we do have a lot of good moments.

Thanks for the ray of sunshine your news brings to me!

Love and blessings,
Cindy

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

You are both such an inspiration to me! You are both so unselfish in the time you dedicate to your family! I am so glad that I found this site, and enjoy keeping up with your journeys through this battle. I believe everyone on this site has been touched by the information that is put on this site. I have your families in my prayers each night, along with the other members on this site!

Congrats Julia, you will be a wonderful Mother just as you are a wonderful Sister!

Michelle
Mobile, Al
AA3, DX 10/20/09

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

For the good wishes.

Good news: my sister's repeat MRI Spectroscopy showed that everything was stable. The recalibration of the machine got rid of the tall peaks of choline/creatine.

I fell a bit better.

Michelle, I am following your journey as well. You have no idea how happy I am you are doing well into your third year of your diagnosis.

Lots of love,

Julia

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

Julia...YES YES YES!!!!!! I feel like I personally kicked cancer in the face when I read that the recalibration showed good results! Every victory is a shared victory for all of us!

Thanks for more good news!

Love and blessings,
a smiling Cindy in Salem, OR

SH2012
Posts: 3
Joined: Jul 2012

I am new to this forum. My wife 49 diagnosed of Astrocytoma III in two locations, left frontal cortex and in thalamus. Doctors have initiated radiation and she has completed 4 weeks. Feels head ache and nausea now. Due for MRI soon and sure will add Temedol. She seems to be holding fair. Feels weak and tired but we are praying and staying positive. Can you give me some advice on the road we are travelling? What should we expect interms of effects and sideeffects of this treatments? I am truly inspired by the folks in this forum and has infused an extra strength to fight.
Thanks

staceycheek
Posts: 11
Joined: Nov 2011

I just want to let you know my husband just passed away from brain cancer at age 32 and If I were you because she is young to I would go to the Burzynski clinic in Houston Texas. I didn't get the chance to go there because my husbands tumor was so aggressive but I had paperwork filled out and had sent it to them. IT is expensive but money just doesnt matter anymore once this is affecting a love one. We also went to Dukes Brain tumor center which was also good but I still think check out the clinic.

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

Hi Julia:

I read your post and I curious about the MRI spectroscopy? What is that? Sarah has not had that done. Where do you live? We live in Alaska so it may not be available here. I share the same frustration as you with regards to waiting for a reoccurrence. I think there must be something they could do to maintain this level of health after the initial treatment.
Sarah is doing MRI's every 2 months but not taking any other meds after her 12 months maintenance of Avastin, Irinetecan and Temodar. I wanted to keep the Temodar going on a lower dose because I read much success on that path. No doc agreed. In the meantime, her MRI's are stable. Her treatment ended in April 2012. I remain in faith but I check this site to see what are people doing and pray for everyone on here. I am glad your sister is enjoying her life. God Bless you and yours Julia.

Edna

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

Dear Edna,

An MRI spectroscopy gives more information about the tumor and the brain. It analyses the composition of cells (choline for example). We know what normal brain would look like; different peaks can give info. My sister could probably explain it better. An MRI spectroscopy is sometimes covered by insurances. We have blue cross/blue shield. Is it important to have it? I am not sure. I always think more info the better. But like mentioned earlier, when we though the "peaks" were off, the neuro oncologist was not going to act on it (I don't think there is a treatment protocol); this prompted my sister to say " why are doing these MRI spectroscopy it is not going to change my treatment?"

My sister is only on temodar and I am also uncomfortable with it since she does not have the genetic deletions.
I am extremely glad that you daughter's MRI remain stable. So many of our friends here are losing the battle. My heart goes to everyone.

Julia

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

Hi Julia:

Thanks for the quick response. I forgot to congratulate you on you upcoming bundle of joy. How exciting. You can enjoy your pregnancy with your sister. I like what you wrote about the placenta and cord - who knows? The medical field does not know how to cure this ugly diesase right now but they will some day. Keep fighting and enjoy today. Blessing to you.

Edna

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

Edna,
I was just looking through the site. Great news that you daughter has finished her treament plan. I felt the same way you did about stopping the temodar with Benjamin. His doctor's stated that it does not make a difference to continue. They had one patient that didn't want to give up the temodar- so they placated him for a few more months- he is cancer free, with very little chance of recurrance.
Benjamin is cancer free, and physicians say because of the great hands of the surgeon removing
99%, and the aggressive treatment plan, he should not have a recurrance for 10,20 or 30 years. Jumping for joy here!
We did build up the courage to ask the chemo doc, if he had treated many patients with this cancer and what there out comes were. Answer was yes, and some are over 20 years out, many working
there way into the big numbers, and very few back, but stable. Which we feel was great news.
May your daughter continue to fight and remain stable the many, many years.

Carol

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

Hi Carol:

I am happy for you and Ben. I also very happy for Sarah. These young people are determined and it is amazing. Sarah just had a good MRI. I hold my breath for each one and then I tell myself "Oh ye of little faith..." Sarah is so busy just living and I love watching her. I read the CSN and worry about what the future may hold for her and for us, but for now we are just living day to day and making the best of it. Take care and God Bless.

Edna and Sarah

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