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I don't know if my sister should take Temodar anymore

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

Hi everyone,

My sister has anaplastic astrocytoma. I am terrified of course. I learned last week that she does not carry the mutation that would make temodar effective. So my question is: does she continue taking Temodar?

I know, I know... I will talk to the neuro-oncologist. But the NO are themselves divided on the issue (just by reading the internet) so at the end they will say "it is her decision".

I hate those words. That means they don't know what to recommend 100%. If ypu have a heart attack, you have a catherization to open up the vessel. It really is not "your decision" unless you have a death wish...

I will consult with three NO and then we will make a decision. I am just hoping that the MRI after the radiation shows REMISSION.

I hate this tumor. I hate this cancer. I don't want her to suffer. I want her to be happy and carefree. This is not fair. This does not make sense. Life is absurd.

I love her so so much.

Anybody with no MGMT mutation and therefore less chances that the temodar works? What did you do? Anybody with personal experience, I would appreciate it.

My love to you all and my hopes that a cure happens soon,

Julia

P.S

2 clinical trials for recurrent and new AA 3 at UCLA phase 2

mighty6
Posts: 47
Joined: Sep 2011

Hi, Julia,

I am having the exactly same problem as you have.My husband is dx as GBM (which is worse than your sister,unfortunately). He just completed his 6 weeks radiation. we are now waiting till the end of the month for a MRI. Our ON did not test his MGMT untill I asked for it.

Now it came back with un-methylated results. I too read lots of articles about this. Talked to ON and she said:
. everybody is different. we don't know if one is responsive to a treatment till we see MRI. especially, at this moment, my hubby is doing quite well. only side effect he got from previous treatments are hair loss, sense of taste loss and some fatigue (we were lucky enough to have gross total removal from surgery). Both our ON and radiation therapist think he actually seems to respond well.

. Not response greatly with Temodar does not mean no response at all. Temodar is still the safest/best chemo for brain tumor by far.

we will have more discussion on nest step with ON after this MRI. One thing I know is that the other alternative is Avastin, which is with high risk. Have you read of this: "the inhibitor of MGMT (O6-benzylguanine, O6BG).The subgroup of patients without promoter methylation may be more likely to benefit from treatment with O6BG. " I might discuss this with our ON.

all the best to you all!
Jane

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

Hi, Julia.

We had a similar issue. David did not have the gene deletions (1p, 19q) that would make Temodar more effective. Different mutation since we are battling anaplastic oligodendroglioma, not AA3, but still the same difficult choice. We did Temodar anyway. I also was devastated when David's FISH evaluation came back without the deletions. Our doctor at OHSU strongly recommended taking Temodar, but another doctor thought we should just do radiation and save Temodar for later. Our doctor strongly disagreed and told us that Temodar and radiation would have a synergistic effect if taken together. So that's what David did---he took Temodar while he did radiation, and then he continued to take it until April of this year.

I am glad that we did Temodar. I believe that it was the right choice for us. We knew going in that the doctors expected it to only be effective for a short time. But they told us that about every chemo. David had two years and 5 months with no tumor progression---no tumor at all. He didn't like taking Temodar, but it was not a terrible chemo. David went to work and college, did things with friends, etc when he was taking it. (He took it 5 days a month.) When he was not in the 5 day cycle of taking it, the side effects went away. His side effects: tired, achey, and "chemo brain." Chemo brain for him was some trouble concentrating and some memory loss. He took Adderal on the days he went to college and to work and that really helped.

I don't know about your sister's situation, but one of the doctors at NIH told me that not having the gene deletion was not an absolute indicator that chemo would not work as well. He said that the data was open to some interpretation. He did say that the percentage of people with the gene deletion showed a better response to chemo---but it didn't mean that we were guaranteed no response or a weaker response. The doctor we saw at Fred Hutchinson in Seattle disagreed, of course. That's been one of the hardest things for me--the lack of agreement between the best of the best in brain cancer treatments. Is it an absolute guarantee that chemo will not be as effective for Kat, or just possible that it won't be as effective?

Please let us know what the second and third opinions say about Temodar. And please ask about Avastin too.

I will be praying for you and for Kat to stay strong and for you both to have your hope renewed. This battle that we are in is like a terrible roller coaster. There are days when bad news and information just send us plummeting downwards, but then there will be days when other things will help you to feel hope and encouragement and will swoop you back up. Hold on tight to hope and to each other.

My heart hurts for you both....I am so sorry that you are going through this. I think about you all the time.

Love, blessings, peace, and healing to you both.
Cindy in Salem, OR

PS Oh, Julia, I just want to warn you about the first few MRIs after radiation. I'm sure that your radiologist will tell you this---but the first MRI after radiation can be very misleading. Our radiologist and oncologist both told us that the first MRI could look worse than before radiation. They use it as a baseline to see what is going on in future MRIs. David's first MRI showed a lot of enhanced area and looked pretty scary, but every progressive MRI showed that area shrinking and getting smaller and smaller until it went totally away. They didn't know if it was scar tissue, calcification, a hematoma, or the surgery area healing. They were just pleased that it went away. (It took a while...almost a year, I think, to go away.) So please don't be totally shocked if the first MRI is not clear. It takes time.

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

I'm sorry, Julia. I mixed your post and the next (responding) post together. I thought you were the one who said something about Avasitin. Please disregard my comment regarding asking about Avastin. I'm sorry!
Love and blessings,
Cindy

mighty6
Posts: 47
Joined: Sep 2011

Cindy.

I've seen that you addressed some of my concern on Avastin and un-methylated MGMT. Thanks also for preparing us for the upcoming baseline MRI. My husband had GBM and he was dx almost at the same time as Julia's sister. So we are at similar stage with similar concerns/emotional up-n-downs. I follow yours and Julia's posts a lot and appreciate your information!

Wish the best to David and Julia's sister.

Jane

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

Thank you for writing.

I did mention Avastin instead or/with temodar; Hopkins says keep on taking the temodar; Duke says take avastin and temodar in unfavorable methylation. Again it is hard to heard that there is no consensus.

We are still thinking about what to do. I think it depends how Kat responded to the radiation. They did warn us how the MRI can look worse (30%) after radiation. Especially since we are doing it a week and a half after her last day of radiation (yes normally they say to wait 2-4 weeks but we are in a hurry... and her NO in Orlando gave us the green light). Also we are going to get a MRI spectroscopy not just a regular MRI. It is more detailed and can distinguish more between edema, radiation necrosis, and tumor progression. Our NO warned us that the insurances companies might not pay for it. (I will fight them). Also like any MRI, the first one is to establish a baseline and see what are going to be subsequent ones.

Kat's left arm is now weaker than her right and her fine coordination of her left hand is not what it was before radiation. It is very hard for us to see that. I discussed it with her Radiation Oncologist and he said that it likely to be a side effect for the edema caused by radiation and that she doesn't need steroids yet (we are trying to avoid them because of the horrendous side effects). She can still play the piano.

I mentioned to him if she should try to use her arm as much as possible and he said yes, it would be like physical therapy. So now everyday Kat will be playing the piano (they have one at Hopkins in the chapel) at least 30 minutes; also I told her to use her left arm for EVERYTHING : eating, brushing her teeth, petting her cat etc...

It still very emotional to go through that; she young and so full of life; and now she sees herself half bald and she constantly afraid of being paralysed in her left arm.

I hate cancer.

I want to wake up from this nightmare.

Best to all of you,

Julia

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

Hi:
My daughter has Anaplastic Astrocytoma 3. She is 18 yrs old. She had surgery, radiation combined with temodar for 42 days. NOw she is doing infusions 2x a month of Avastin and Irinetecan. Her last infusion of the month is combined with 5 days of Temodar. the Temodar is 400mg. a day. We have been doing this schedule of chemo for six months. Sarah does not tolerate the Temodar well at all. She throws up quite a bit and is basically non-functioning.
The NO wants to take the Temodar away because she is not sure it is working and they think it is affecting Sarah's quality of life too much. I am worried sick, of course. We have two good MRI'S, so we don't want to change anything.
What else do you know about Temodar? Thanks for sharing and helping others. God's Blessings to you and yours.
Edna

connsteele
Posts: 232
Joined: May 2011

Sorry to hear that your dauther is having such a hard time with the Temodar. Our son (age 34 AA3) has had the standard 28 day Temodar regimen taken in conjunction with radiation (June 2011), and now has completed 2 cycles of the 5/28. So far, the Temodar hasn't caused naseau, just extreme fatigue for a few days. Is takes Zofran for the nausea, and so far, so good. However, he is starting a stronger dose of the Temodar this next round, so we sure hope this trend continues. Has your NO addressed this issue of nausea? The nurse practitioner who works with our NO said that if one gets sick, as in vomiting, etc. while on chemo, then they aren't doing their job. That something can always be done. Sure hope something works out for your daughter and that she can handle to treatments. I sure feel your pain as you support your daughter through this.

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

Hi:
Yes, my daughter takes zofran, emend, benedryl, ativan, scopolamine patch. We even use decradon during the infusion. Wow - that is a long list isn't it, but we pull out all of the meds when we use Temodar. When my daughter took the Temodar inconjuntion with radiation, the dose was a lot smaller than she takes now and she tolerated it fine. We even take the Temodar at night and then she goes to bed after taking it.
Like I said yesterday, I am afraid to stop Temodar because it seems like it is used a lot to stop the tumors. It is so hard to know what to do. Our NO said they don't have enough evidence for this stage of treatment for her to be sure that my daughter getting sick so much is worth it. Praying for answers. God Bless you and yours.

janellie's picture
janellie
Posts: 18
Joined: Aug 2011

Julia,

I share your concern about using time on Temodar with her methylation issue. I think since Temodar is approved frontline treatment, most doctors go with that because at the end of the day they have to cover their own rears so to speak. I asked about my dad's methylation and we would have had to do special testing for that and with his condition, it ultimately will not matter. However, since your sister is a grade III you definitely have a lot more options and a lot more time to make decisions (statistically speaking). If I had to make a decision in your situation I would definitely consider Avastin over Temodar and then find out what gamma options you have. Track down trials and really look at which ones might be more agreeable to her methylation status. My cousin in addition to my father is currently battling this disease. She is much younger and was able to be resected and her Karnofsky score was and remains 100. So she has done far more aggressive treatment for her GBM. She is at her one year anniversary this month and you would not know that she has any illness. She is in amazing shape but has, like I said, done surgery, aggressive infusion treatments and then at about 8 months followed up a few small spots with gamma knife.

Wishing and praying for the very best for you and your sister....if you need to talk, or want to share ideas, please feel free to email me and I will be in touch.

much love,

Janelle

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

HI:
I am wondering what that methylation is? Also, where does your cousin receive treatment? I trying to pay attention to what medical facility people use in case we have to switch. Also, did you cousin use Temodar?
My daughter takes the Temodar but they want to stop it and keep the Avastin and Irintecan, but we are scared to stop it. The MRI's look good right now, but my daugher gets very sick from Temodar. I wish you and your family the best. God Bless.
Edna

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