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Post Op AAIII scary MRI Results????Any advice...

penron04
Posts: 5
Joined: Oct 2009

My husband, 32, was diagnosed with AAIII in August 09. Had successful tumor removal Sept 1 2009. Follow up with Chemo and Radiation for 6 weeks, clear subsequent MRI's. Still takes Temodor one week out of the month. Started getting headaches, rash on face, sores in his nose, and pink eye. Dr.'s requested immediate appt for MRI, I have the results but the Dr's wont be able to see us until Monday. I am going crazy because when I look at his pre op mri and this new one, I see a spot farther back on the right front lobe, behind where the orignial tumor was. I can't tell what it is, if it is another tumor or blood or something else. Does this seem too soon for a relapse? Could it be something else? Radiation maybe? Does anyone have any advice to help me get through the next two days until we can see the doctor? Has anyone suffered those similar symptoms? Any advice is greatly appreicated.

PBJ Austin
Posts: 347
Joined: Mar 2009

I've just returned from 2 weeks out of town so I'm just now seeing your post. I'm sorry I was unable to help when you first asked. Please give us an update, I hope everything is OK.

aranda
Posts: 11
Joined: Aug 2009

Hi there,

My husband and your husbands cases seem very similar. My husband is currently in the hospital, he had a 2nd crainiotomy yesterday to debulk some more tumor. They also implanted chemo wafers directly to the tumor sites. I hope your MRI results have a good outcome. Here if you need to talk

Jen Aranda

aranda
Posts: 11
Joined: Aug 2009

Hi there,

My husband and your husbands cases seem very similar. My husband is currently in the hospital, he had a 2nd crainiotomy yesterday to debulk some more tumor. They also implanted chemo wafers directly to the tumor sites. I hope your MRI results have a good outcome. Here if you need to talk

Jen Aranda

penron04
Posts: 5
Joined: Oct 2009

Well from what we were told on Tuesday it has almost doubled in size now 12mm since December. It's still small and he was told he could have cyber knife if needed they want to wait a month and rescan again i've never heard of chemo waffers i will have to ask about that today when we go back to the do. Were they able to remove the whole tumor the first time with your husband??? Mine they did and said it looked really good but now that they are seeing this it worries them if it would be comming back so soon. I will let you guys know what they say today my husband is getting everything together inorder to be able to take time off work again. So we will see what happens. He turnes 32 next friday and is very healthy so he has all that on his sida

penron04
Posts: 5
Joined: Oct 2009

it seems like all of us started this adventure around the same time.We have 2 more monthe of chemo. Unless they tell us different today. Thank you all for your support

patriciam
Posts: 39
Joined: May 2009

HI,
My daughter, age 17, was diagnosed at 16 with AA3. She had a full resection, 6 weeks of radiation and same cycle of temador that your husband is on. She had a rash, sores in her mouth, and nausea too, but not too bad. She is doing really well now, a year later. She has a follow up MRI next month. Just wanted to let you know that you are not alone......
pat

penron04
Posts: 5
Joined: Oct 2009

We went and saw the doc today and they feel strong that it's only fluid from the radiation. So now we can all sleep a little better tonight knowing that it's not back already. They want to rescan in 3 months but everythings looking great right now. It was kinda nice to go in with all the info i got and not need to even need it at this point. And even better to know i'm not alone. Thank you everyone for you support and if i can be any please let me know. It seems like all of us are very close in treatment. With being diagonsed close to eachother. My husband has 2 more months of Temador. And i cant wait to not pay that bill anymore. lol Thank you all again

PBJ Austin
Posts: 347
Joined: Mar 2009

I'm so happy for you penron!!

I don't mean to hijack your thread but may I share some great news as well? My kid sis has been in treatment for AA3 for the last year and it looks like her tumors are going away. The doctors are surprised it is happeneing so quickly and she might be able to stop chemo in May.

This CAN be beat!!

penron04
Posts: 5
Joined: Oct 2009

Hijack all you want. Good news is always good.I'm so happy for your sister.Congrats!!!!!!

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

Sounds like this is a good news thread! Repeat coming...lol My hubby, 44, was diagnosed August 2009 - AAs (he has three - inoperable). 33 radiation treatments and 44 days of Temodaor (lower doses) at Duke Oct-Dec. He is currently on his 4th cycle of the 440mg of Temodar. He has tolerated it well. Worked all through it. He's fatigued during these weeks, and sometimes the week after, but he has no nausea, no pain, no symptoms besides some minor belly bloating (ice cream...lol).

Each MRI has shown shrinkage, and we go back to Duke on April 22nd for the next. They are doing them every two months, after two of the Temodar cycles. They have already said he'll be on the Temodar for 12 cycles at this dosage, so that puts us finished up with this in November (or before when these tumors disappear into oblivion).

Hubby's 2nd round of brain cancer in his life but as before, he's fighting and expecting another miracle! Treatments have come far, and that has put him at ease that he is not currently affected negatively by treatment. (In 1987 the infusion chemo made him "throw up his toe nails." His quote.) Much has been learned in the last 23 years, and I know much more will be.

Continued good health and clean MRIs to all.

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