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Thread: Cancer- the six letter word that changed my life.

  1. #31
    I'm hoping so. He seems to be less dizzy and complaining less of headache today and a bit more steady.
    I'm guessing brainstem tumours are different since you can't do surgery on them before radiation or chemo.
    Last edited by seaofgladness; 01-22-2017 at 04:16 AM. Reason: Wording

  2. #32
    So repeat advanced MRI scheduled for the 14th. But guess what guys? He was on steroids past few weeks and yup, got a perianal abscess. We are at MDA getting it drained now. Sigh. Can't catch a break.

  3. #33
    Last MRI is inconclusive, it doesn't seem to be a new tumor on the left side, right side seems clean. They are going to wait another four weeks and do a repeat advanced MRI of the left brainstem.

  4. #34
    Super Moderator Top User
    Join Date
    Dec 2011
    Do they think it's pseudoprogression?

  5. #35
    They say it's most likely radiation side effects and wanna wait and see if it clears up in 4 weeks

  6. #36
    Regular User
    Join Date
    Feb 2017
    I didn't know which one to reply to so this is to Cancer the six letter word. so this is in general. We are just starting our journey with the Gleoblastoma grade 4, and reading the other blogs, I Thank you for me not feeling alone. Even tho for 15 years I took care of my sister who had an AVM, then breast cancer and at the time of in surgery to shrink the AVM to get the pressure off to stop seizures, she had a frontal aneurysm just about ready to burst. She survive 25 yrs after her surgeries and being on meds. about 2 years before she died, our mother was dx with leukemia at the age of 85, she died shortly after her 86th BD. 6 years later I actually took a home care class, the following year I was recruited by a hospice company. 6 years later I had to take a disability early retirement. Loved doing what I was doing, but now I'm on the other side and the compassion I had all those years was OH MY my mind is going all over the place tonight.
    The blogs are really helpful and scary at the same time. My hubby is having his 5th out of 15 treatment tomorrow. His moods are starting to change,he's always been a positive person and laid back. Now he's impatient at times because he's having trouble to think things thru like he always has. I'm feeling guilty of my impatient thoughts at him. My tongue is always bleeding from biting it to not be snippy. LOL. From seeing my patients on their journey I know what is ahead of me. and no one in the family knows what the real journey is going to be. Thanks all for being on board

  7. #37
    I am sorry you had to face this personally @ wonder. I totally understand what you mean about holding your tongue.

    update- we have been getting advanced MRI scans every 4 weeks and so far no tumor and just radiation side effects. We are just waiting and hoping that its gonna be a boring scan on the 20th. The thing that surprised me is the amount of radiation side effects!. I am of the opinion working out would help some of it but he is unsteady in his walk so walks very little.
    Anyway, nothing to report right now which is why I have been quiet. I hope it stays the same.

    One thing i was wondering is, how do i even know if its an actual tumor? I mean they never took a biopsy cuz of the brainstem location. And they never did a advanced MRI the first time to see if it was a tumor. maybe I am just in denial. Anyone else deal with a brainstem tumor? any experiences?
    Hubby with inoperable brainstem glioma. Dx- 8/30/2016. Finished radiation- 10/28/2016. started temodar 5/20/2017- didn't tolerate it. started avastin 6/24/17. Tumor growth (Glioblastoma) avastin stopped 9/22/2017. Hospice started 9/28/2017. Went to heaven- 3/4/2018

  8. #38
    Super Moderator Top User
    Join Date
    Dec 2011
    Glad to hear the scans are stable.

    It is true that unless they do a biopsy, they have no proof that it's a tumor or what kind of tumor it is. That said, experienced neurosurgeons and neuro-oncologists will make educated guesses based on what they see on the scan, especially when it's in an inoperable area.

    I think you should probably ask them what led them to conclude it was a tumor.

  9. #39
    Well so much for uneventful scans. Had doctors appointment yesterday and it was Not so great. The regular MRI shows new lesions (spots) on the left brainstem (original tumor was on right) and also on the cerebellum. However the advanced MRI (spectrometry with MRI) in the same areas does not seem to be consistent with Tumor and may be radiation side effects.
    She is not sure what to make of it because for three months we have been seeing that area of the lesion grow however advanced scans don't show Tumor and since he has no symptoms it was watch and wait.
    Advanced scans show less blood flow to those lesions and less evidence of cell division - both of which would be high if it was tumor.

    She is going to meet with tumor board on Thursday (week from today) to see if we should start chemo or wait another 4 weeks since he doesn't have debilitating effects yet.
    Chemo has its own side effects so she doesn't wana start him on it unless needed. She also mentioned asking if someone is willing to biopsy the cerebellum lesion and what the risks are for that biopsy and if we wana take those risks

    Options are : wait and rescan

    Start chemo - assuming it's tumor growth

    Start chemo- to reduce radiation side effects

    Hold all chemo (avastin) even for side effects until he starts showing symptoms that his body needs help to fight the side effects. And keep scanning

    Take biopsy from cerebellum to see what it is and treat accordingly. Also considering effects of biopsying a sensitive spot like that.

  10. #40
    He is going to start Temodar.

    Any tips or ideas to make taking it better? What were the side effects you all had?


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