Frustrations -update on my sister dx anaplastic astrocytoma

I think of you all often
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

thank you for the update...and David's status
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

cindysuetoyou said:

thank you for the update...and David's status
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

Caregiver
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 said:

thank you
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

happy for you!
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

cindysuetoyou said:

thank you for the update...and David's status
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

Anaplastic Atrocytoma III
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

alutiiqmom said:

thanks for the update
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

Edna,
I was just looking
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

SH2012 said:

Anaplastic Atrocytoma III
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

I just want to let you know
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.