Temodar v2.2

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Temodar v2.2

by jon4156 on Fri May 16, 2014 01:56 AM

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Just gave my wife her 2nd cycle of Temodar for this recurrence.  I call it 2.2, 2nd GBM, 2nd cycle of Temodar.

A CT scan Monday (12th) confirmed a large mass in her liver.  NO and radiologist are not sure if it's metastasis from the GBM (very rare) or a liver specific cancer.  She'll have a biopsy Monday (19th) to determine the source.

NO says he has only seen two cases of GBM metastasis in his career.  Well, let's see, NueroSurgeon said only 4% chance of stroke during brain surgery, which my wife had.  And said her recovery should be faster than the first surgery back in 2011, which it wasn't by a loooooooooong shot.  Anyone taking bets on my wife being the third case her NO is going to see for GBM metastasis?

Know what our reaction was?...we didn't have one. 

 

RE: Temodar v2.2

by Ozgirl on Fri May 16, 2014 02:33 AM

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jon, I'm so sorry. I'm thinking of you and your wife always

RE: Temodar v2.2

by loveiseternal on Fri May 16, 2014 04:25 PM

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So sorry Jon.  Have they ruled out gliosarcoma?  I'm sure you have probably explored this, but here is a brief summary:

Gliosarcoma is a rare type ofglioma, acancer of the brain that comes fromglial, or supportive, brain cells, as opposed to theneural brain cells. Gliosarcoma is a malignant cancer, and is defined as a glioblastoma consisting of gliomatous andsarcomatous components.[1]

It is estimated that approximately 2.1% of allglioblastomasare gliosarcomas. Although most gliomas rarely show metastases outside thecerebrum, gliosarcomas have a propensity to do so, most commonly spreading through the blood to thelungs, and alsoliverandlymph nodes.[2]

Gliosarcomas have an epidemiology similar to that of glioblastomas, with the average age of onset being 54 years, and males being affected twice as often as females. They are most commonly present in thetemporal lobe. It has been suggested that gliosarcomas areradiation-induced.

Hang in there.  I know it's tough.  You do almost get numb when you get bad news after bad news (been there).  Sally 

RE: Temodar v2.2

by pdbiar on Fri May 16, 2014 05:51 PM

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So sorry Jon for what you and your wife are going through. I just can't believe why now a mass on the liver. Words are not there or cannot be posted how angry as another patient to patient I feel for your wife. I am so glad she has you as a caregiver and hope you have someone you can talk to also. You are both in my prayers. Pat

RE: Temodar v2.2

by karynk on Fri May 16, 2014 10:25 PM

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Oh my Jon - This whole situation just gives me flashbacks to that final year with my husband.  I remember when he was in the ER w/ bilateral PEs and the ER doc kept telling me "this is very, very serious."  You really get to that point that you just don't react anymore.

I have a collection of words for this whole situation, but if I said them....you wouldn't see this post.  This just sucks....really, really sucks.

-Karyn

RE: Temodar v2.2

by mollie924 on Sat May 17, 2014 01:11 AM

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Jon, just when you think that things cannot get any worse - they do. I am very sorry to hear that your wife has another problem to deal with. My husband is back on temodar also. Since his seizure in December, he is very disoriented and it is extremely difficult to have a normal conversation with him. He is a shell of the person he use to be. Like you, it was paradise compared to now. I'll say to you what I say to myself - take each day as it comes.

RE: Temodar v2.2

by ASurvivor on Sat May 17, 2014 12:14 PM

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The translation of CT and MRI scans are part science and part art. Everyone seems to be confused by what is going on. May the biopsy on Monday reveal a more hopeful translation of the source and best treatment of this mass. Good luck.

Bill

RE: Temodar v2.2

by Patiwalton on Sun May 18, 2014 12:12 AM

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Jon, so sorry to hear about your wife. My husband was told he had GBM only to find that the mass in his spinal cord changed the diagnosis to GSM. This us new to us and he is just in his 4th day of radiation and temodar. Reading stories on this forum is informative but heartbreaking at the same time. Best of luck to you and your wife. Pati

RE: Temodar v2.2

by angieblue on Wed May 21, 2014 06:10 PM

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hi Jon,

I'm so sorry to read this news. It looked like your wife was making progress physically and I hope that continues. Every day is a new development with brain cancer. We are thinking of you and hope for better news for you and your wife soon. 

RE: Temodar v2.2

by vwxyz on Thu May 22, 2014 10:11 AM

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Jon, up to 80% of the liver can be removed with surgery.  In many cases the liver can regrow the part that was missing.  I am hoping the tumor is not in the lymph nodes. 

I am truly sorry your wife has had a stroke.

 All people get blood clots after surgery which can possibly cause strokes.  People with cancer in any part of their body need daily blood thinners because they have a higher incident of blood clots.  The medical field should never discharge a patient from a hospital without home or rehab prevention care for this fact.   In fact, the medical field should test a person for Factor 5 gene mutation "before" any operation, including day surgery.  This mutation causes the body to create blood clots.  Just a simple test of prevention to protect the patient from complications.  

Every time someone goes under anesthesia, they have a harder time bouncing back each time.  When my son had to get monthly bone marrow taps in the Jimmy Fund, the Dr.s stopped the anesthesia for all the children after awhile because of what it was doing to the children. After that, the spinal and bone marrow taps were all done with local area anesthesia awake.  

I am truly praying for your wife and you that it is not a GBM metastasis. 

Jan 

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