AA3 and decisions about treatment

momsworld

Hi there,
My daughter, 13, has AA3. She had her 4th clear MRI yesterday. YAH!, as happy as I am to hear that the MRI is clear, the doctor offered us some options for treatment. 1. continue with treatments as it seems to be working 2. stop treatment and observe(this is my daughters choice). or 3. continue with partial treatment (stopping the meds that are giving her side effects). I do not know what to do. I am scared for my daughter to stop treatment. I do not want her to but, she is tired of getting treatments. She takes a lovely cocktail of meds everyday, 2 of them being oral chemos and then receives Avastin every other week. This means she will miss at least 1-2 days of school every other week. She will be going into the 8th grade and is the high man on the totum pole at her school. She feels this will be a big year for her and she wants to enjoy it without all the pills etc. What do I do? do I take a chance and stop treatments for her? should I honor her decision being only 13? please help, any advice is welcome. Thank You

PBJ Austin

Tough call indeed
Geez momsworld, your daughter and the rest of your family have been through so much and now you have this tough decision to make. I am very happy about the continued clear MRI's, HOORAY for that!! I'm a little surprised she is still in treatment after 4 clear MRI's, as my kid sis was allowed to stop and observe after only 2. Of course every case is different and I don't know your daughter's medical history so I am not qualified to say what is best.

I probably sound like a broken record always singing the praises of second opinions but have you considered asking the opinion of another oncologist? Another doctor can always add a new perspective and help provide some insight.

Good luck with your decision, I'm sure you will do the right thing.

Pam

momsworld

PBJ Austin said:

Tough call indeed
Geez momsworld, your daughter and the rest of your family have been through so much and now you have this tough decision to make. I am very happy about the continued clear MRI's, HOORAY for that!! I'm a little surprised she is still in treatment after 4 clear MRI's, as my kid sis was allowed to stop and observe after only 2. Of course every case is different and I don't know your daughter's medical history so I am not qualified to say what is best.

I probably sound like a broken record always singing the praises of second opinions but have you considered asking the opinion of another oncologist? Another doctor can always add a new perspective and help provide some insight.

Good luck with your decision, I'm sure you will do the right thing.

Pam

hi there
I have been thinking of you and your sister, how is she doing? I know this decision I have to make is a hard one. The reason she is still on treatment is because during her radiation treatments and temodar, the tumor grew back. She has had 4 crainiotomies to remove tumor growth. This is why this decision is so hard because I fear that the tumor will grow back without treatment. As for the 2nd opinion, I totally trust her doctors at childrens hosp/Jimmy fund in Boston. They are the 2nd opinion people (lol). Her first doctor told us that there was nothing they could do and to enjoy my time with her and now, 10 months cancer free. thanks for you input and please keep me posted on your sister. Take care

PBJ Austin

momsworld said:

hi there
I have been thinking of you and your sister, how is she doing? I know this decision I have to make is a hard one. The reason she is still on treatment is because during her radiation treatments and temodar, the tumor grew back. She has had 4 crainiotomies to remove tumor growth. This is why this decision is so hard because I fear that the tumor will grow back without treatment. As for the 2nd opinion, I totally trust her doctors at childrens hosp/Jimmy fund in Boston. They are the 2nd opinion people (lol). Her first doctor told us that there was nothing they could do and to enjoy my time with her and now, 10 months cancer free. thanks for you input and please keep me posted on your sister. Take care

Thanks for asking
My sister is still doing very well. They told us remission would never happen but it did happen over a year ago. They are now doing MRI's every 4 months instead of every 3 months.

I can see your dilemma since the tumor did come back. I would be afraid it could come back again too. I wish I had the answer, but please know that you, your daughter and all others in this cybor-family are in my prayers every day. Good luck with your decision.

alutiiqmom

curious about your medicine
HI:
My 17 year old has anaplastic astrocytoma grade 3. We had brain surgery and 33 sessions of radiation. Now she has an infusion the 1st and 3rd week of avastin and irintecan. The last infusion is combined with temodar pills for 5 days.
Do you mind if I ask what medicine your daughter takes? I am so happy for you. What hospital do you go to? We go to Seattle Children's. This is such a scary illness. MY daughter is supposed to have these infusion until next May - OMG!
God Bless you and your daughter.

alutiiqmom

momsworld said:

hi there
I have been thinking of you and your sister, how is she doing? I know this decision I have to make is a hard one. The reason she is still on treatment is because during her radiation treatments and temodar, the tumor grew back. She has had 4 crainiotomies to remove tumor growth. This is why this decision is so hard because I fear that the tumor will grow back without treatment. As for the 2nd opinion, I totally trust her doctors at childrens hosp/Jimmy fund in Boston. They are the 2nd opinion people (lol). Her first doctor told us that there was nothing they could do and to enjoy my time with her and now, 10 months cancer free. thanks for you input and please keep me posted on your sister. Take care

Pray!
HI:

I saw your daughter goes to Jimmy Fund hospital in Boston and it was a second opinion. That is a tough call. But I would pray. Pray with your daugher. Ask the doctor about the risks of stopping versus risk/side effects of the medicine. Again, I wish you the best.

momsworld

alutiiqmom said:

curious about your medicine
HI:
My 17 year old has anaplastic astrocytoma grade 3. We had brain surgery and 33 sessions of radiation. Now she has an infusion the 1st and 3rd week of avastin and irintecan. The last infusion is combined with temodar pills for 5 days.
Do you mind if I ask what medicine your daughter takes? I am so happy for you. What hospital do you go to? We go to Seattle Children's. This is such a scary illness. MY daughter is supposed to have these infusion until next May - OMG!
God Bless you and your daughter.

Hi
I am sorry to hear about your daughter. My daughter is on a 5 drug regimen. Here is a list of meds she takes, 1. Etoposide, 2. cyclophosphamide, 3. Thalomid, 4. Fenofibrate,
5. Avastin every other week, there is also celebrex and prilosec for her stomach. This lovely cocktail of meds stops bloodflow to cells so they die. Unfortunetely, it stops bloodflow to healthy cells also. She goes to Dana Farber/Jimmy Fund clinic and Childrens hospital in Boston Ma. They are awesome there. I don't think there is any place better for her. My daughter has been on this treatment since last october. She is tired of treatments and just wants to be normal again. I agree with you that this illness is scary, same diagnosis with different treatments, same cancer, but responds to treatment differently. That is scary. Where was your daughters tumor located? my daughters was in her cerrebellum. I hope to stay in touch with you as our kids are similiar in age and it's nice to talk to someone

momsworld

alutiiqmom said:

Pray!
HI:

I saw your daughter goes to Jimmy Fund hospital in Boston and it was a second opinion. That is a tough call. But I would pray. Pray with your daugher. Ask the doctor about the risks of stopping versus risk/side effects of the medicine. Again, I wish you the best.

I do pray and I do believe
I do pray and I do believe in the power of prayer, my daughter wishes to stop treatment so she can just be normal. This is a big year for her in school. She will be in 8th grade and they go to washington dc with the school, she wants to do all the things that her friends do. I don't blame her one bit. She has been dealing with this since march 2010. Her doctor knows this is a hard decision so he told us that he can help us with the decision. Monday will be the day we decide. We go to boston for her avastin and then we can talk to the doctor and go from there.

connsteele

momsworld said:

Hi
I am sorry to hear about your daughter. My daughter is on a 5 drug regimen. Here is a list of meds she takes, 1. Etoposide, 2. cyclophosphamide, 3. Thalomid, 4. Fenofibrate,
5. Avastin every other week, there is also celebrex and prilosec for her stomach. This lovely cocktail of meds stops bloodflow to cells so they die. Unfortunetely, it stops bloodflow to healthy cells also. She goes to Dana Farber/Jimmy Fund clinic and Childrens hospital in Boston Ma. They are awesome there. I don't think there is any place better for her. My daughter has been on this treatment since last october. She is tired of treatments and just wants to be normal again. I agree with you that this illness is scary, same diagnosis with different treatments, same cancer, but responds to treatment differently. That is scary. Where was your daughters tumor located? my daughters was in her cerrebellum. I hope to stay in touch with you as our kids are similiar in age and it's nice to talk to someone

AA3 in cerebellum
So glad to hear that your daughter is doing well. I'm curious. You said your daughter's tumor is located in her cerebellum. That's the same location as our son's (AA3, dx 4-18-11). Is she having any problems with balance, and hand dexterity? Before his surgery, our son's balance and fine motor seemed OK, but he was having problems with confusion, slurred speech, and hallucinations of bugs being all over the place. Right after surgery, he did better...no more bugs around and more mentally alert and speech improved. His balance worsened, but not enough to warrant walking aids. Now, things have gotten worse, started while on the radiation, which was really hard on him. The docs said they couldn't tell if this decline was due to radiation or tumor progression. His first post-radiation MRI didn't help much either.

Now, he needs assistance with walking to avoid falls. His speech has stabilized but he still has problems finding the right words. And, he has periods of double vision. His hand dexterity hasn't improved either. The doc said these are all "cerebellar" effects. All of this means that he can't do some of the things he enjoyed before...like billiards (he was a champion pool player) and video gaming. Plus, he doesn't really talk to anyone, including us, because speech is so difficult. So, all he does is sit in the recliner with his ball cap pulled down over his face. It's hard to tell if this is depression (understandable...I am too) or from the disease.

Just wonder how your daughter is doing? Is she able to go to school and function on a pretty high level? Appreciate your comments.

Prayers and healing thoughts for your daughter.

momsworld

connsteele said:

AA3 in cerebellum
So glad to hear that your daughter is doing well. I'm curious. You said your daughter's tumor is located in her cerebellum. That's the same location as our son's (AA3, dx 4-18-11). Is she having any problems with balance, and hand dexterity? Before his surgery, our son's balance and fine motor seemed OK, but he was having problems with confusion, slurred speech, and hallucinations of bugs being all over the place. Right after surgery, he did better...no more bugs around and more mentally alert and speech improved. His balance worsened, but not enough to warrant walking aids. Now, things have gotten worse, started while on the radiation, which was really hard on him. The docs said they couldn't tell if this decline was due to radiation or tumor progression. His first post-radiation MRI didn't help much either.

Now, he needs assistance with walking to avoid falls. His speech has stabilized but he still has problems finding the right words. And, he has periods of double vision. His hand dexterity hasn't improved either. The doc said these are all "cerebellar" effects. All of this means that he can't do some of the things he enjoyed before...like billiards (he was a champion pool player) and video gaming. Plus, he doesn't really talk to anyone, including us, because speech is so difficult. So, all he does is sit in the recliner with his ball cap pulled down over his face. It's hard to tell if this is depression (understandable...I am too) or from the disease.

Just wonder how your daughter is doing? Is she able to go to school and function on a pretty high level? Appreciate your comments.

Prayers and healing thoughts for your daughter.

Hi there
My daughter does have problems with balance and her left side has been affected. The doctors say the same as yours about why, but I think it is from radiation. They radiated her whole cerrebellum, so to me it is not surprising about her balance. She has a hard time walking straight lines and falls down if she turns her head to quickly. She needs to use hand rails to go up and down stairs and she is very slow. She does go to school but needs to use the elevator. She also has a 504 plan in place at school. She tried to ride her bike the other day but wiped out and got huge bruises on her legs from that. She cannot do some of the things she was able to do before. It has been hard on her.

connsteele

momsworld said:

Hi there
My daughter does have problems with balance and her left side has been affected. The doctors say the same as yours about why, but I think it is from radiation. They radiated her whole cerrebellum, so to me it is not surprising about her balance. She has a hard time walking straight lines and falls down if she turns her head to quickly. She needs to use hand rails to go up and down stairs and she is very slow. She does go to school but needs to use the elevator. She also has a 504 plan in place at school. She tried to ride her bike the other day but wiped out and got huge bruises on her legs from that. She cannot do some of the things she was able to do before. It has been hard on her.

Kudos to your daughter's courage
Thanks for the reply. Has your daughter had any physical therapy? Our son is starting that today. Yesterday, we had his second appointment at The James at Ohio State. (we transferred back to Ohio after moving our son back home with us from where he lived in Virginia.) We weren't sure if he was going to have the Avastin infusion or start the 5/28 Temodar. Even though our children have the same dx (AA3), the treatments are different. So far, he's only had radiation and the accompanying Temodar. And his only surgery was to debulk the main tumor and obtain tissue for the biopsy. Since your daughter has done so well on the five drug and several surgeries, this makes me wonder why our son's treatment regime is so different. So far, the docs haven't mentioned any more surgeries. He did say that if David has a repeat of the dangerously low blood counts on the Temodar, he would put him on the Avastin. The James at OSU is very highly rated, and affiliated with the National Institutes of Health, so I assume they are up to date on all the latest treatments. Makes me wonder, are we doing all we can for our son? It's so hard to find the balance between quality of life and treatment. Hope and pray for kids to win this fight!

momsworld

connsteele said:

Kudos to your daughter's courage
Thanks for the reply. Has your daughter had any physical therapy? Our son is starting that today. Yesterday, we had his second appointment at The James at Ohio State. (we transferred back to Ohio after moving our son back home with us from where he lived in Virginia.) We weren't sure if he was going to have the Avastin infusion or start the 5/28 Temodar. Even though our children have the same dx (AA3), the treatments are different. So far, he's only had radiation and the accompanying Temodar. And his only surgery was to debulk the main tumor and obtain tissue for the biopsy. Since your daughter has done so well on the five drug and several surgeries, this makes me wonder why our son's treatment regime is so different. So far, the docs haven't mentioned any more surgeries. He did say that if David has a repeat of the dangerously low blood counts on the Temodar, he would put him on the Avastin. The James at OSU is very highly rated, and affiliated with the National Institutes of Health, so I assume they are up to date on all the latest treatments. Makes me wonder, are we doing all we can for our son? It's so hard to find the balance between quality of life and treatment. Hope and pray for kids to win this fight!

Hi
Hi, I think the treatments are different because they were able to do a full resection of her tumor. Another boy at the clinic has the same as my daughter and they are treating him with a different treatment. I also think that the location of the tumor is a big thing. Every cancer reacts differently to treatment. My daughters did not respond to temodar and radiation, so we had to go to the next option. It has been a long 17 months. She did have some physical therepy after her 2nd and 3rd surgery. She has come along way. Keep positive :-)

Alexanderson

Hi !
I am happy to hear that all went good for your daughter, my mother have also AA3 and she should start radiation soon... I hope the God will help us, if there is some advice I would like to hear..
Thanks forward !

alutiiqmom

momsworld said:

Hi
I am sorry to hear about your daughter. My daughter is on a 5 drug regimen. Here is a list of meds she takes, 1. Etoposide, 2. cyclophosphamide, 3. Thalomid, 4. Fenofibrate,
5. Avastin every other week, there is also celebrex and prilosec for her stomach. This lovely cocktail of meds stops bloodflow to cells so they die. Unfortunetely, it stops bloodflow to healthy cells also. She goes to Dana Farber/Jimmy Fund clinic and Childrens hospital in Boston Ma. They are awesome there. I don't think there is any place better for her. My daughter has been on this treatment since last october. She is tired of treatments and just wants to be normal again. I agree with you that this illness is scary, same diagnosis with different treatments, same cancer, but responds to treatment differently. That is scary. Where was your daughters tumor located? my daughters was in her cerrebellum. I hope to stay in touch with you as our kids are similiar in age and it's nice to talk to someone

Checking in
Hi:
Thanks for sharing that. We are doing Avastin and Irinetecan two times a month and then we also take Temodar for five days a month. She takes Keppra for seizures. We saw a naturopath and he wants my daughter to take Maqui Berry powder which is supposed to be good for brain cancer and Curapro for inflammation during cancer.
My daughters tumor was on the front left side. It greatly impacted her speech and some memory problems. Her balance is good, but her right side is very weak right now.
I hope you are doing ok. God' Blessings to you and your daughter.