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

  1. #61
    Super Moderator Top User
    Join Date
    Dec 2011
    Sounds almost like it could be focal seizure activity? Is it constant?

  2. #62
    yes its constant. He had this during radiation treatment and it went away like a week after radiation was done.
    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

  3. #63
    on a separate note, do you guys know any organizations that help pay off the growing deductible for brain tumor patients?
    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

  4. #64
    Super Moderator Top User
    Join Date
    Dec 2011
    If there is anything, the American Cancer Society would be most likely to know about it, I think. Are you registered with them?

    You might also try posting a question in the "Financial Issues" section of the forum, here:

  5. #65
    I haven't registered with them. I guess I will. Thanks for the link @ GBM

    The MRI shows lots of improvement from June. However, not as clear as in April. We are continuing his avastin every two weeks and he has a follow up to see if it's still working four weeks from
    Now. And MRI 8 weeks from now.

    His tightness is what's bothering the most. The doc says it is most likely due to the location of the tumor sending off a tightness sensation. She increased the neurontin and we are hoping it goes away when the tumor shrinks.

    Thankful for a good report.

  6. #66
    Super Moderator Top User
    Join Date
    Dec 2011
    Glad to hear about the good scan; sounds like the Avastin is working.

    When I first joined this forum, the data was that Avastin only had an effect in 40-50% of cases. However, more or less everybody on this forum who's tried Avastin has gotten some good results from it.

    Hope the tightness symptom improves.

  7. #67
    Hey everyone

    Haven't posted in a while being busy with his care. Hubs on avastin as of now and Doing alright. His walking has gotten better, although still with a walker. Has any of you had loved ones come off walker after therapy and treatment? His new lesions are on the cerebellum so I think the walking issue is due to that.
    He also has this tightness or pulling sensation on the right ride of the face. This is more nerve than muscle issue. His last MRI showed a lesion near CN V. I'm assuming that's causing that, will have to ask the doc.

    I wanted to ask you guys if anyone had advice on how to get ready and what all I should buy for a time if and when he can't walk and is bed ridden.

    How do you bathe them? Brush teeth? Restroom? Prevent sores? What all did you do to prepare or what advice can you give that I should have at home? Thanks.

  8. #68
    Super Moderator Top User
    Join Date
    Dec 2011
    Hi. Glad to hear he's doing better right now.

    Depending on where you live, supplies, when you need them, are quite easy to get. (Even in the rural area where we live, there's a medical supply store 30 miles away that's open 365 days a year.) So in terms of getting needed things, you really just need to find a medical supply store near you that will take his insurance. And if they deliver, so much the better.

    I can tell you the things we ultimately needed for my sister, but don't buy them in advance; there's a period of in-home care in the endstage for most people with GBM but not all, and besides, having the stuff around the house could be a bit of a downer:

    - bedside commode
    - bedpan
    - hospital bed (important for raising him to a sitting position) (these are rented, not bought)
    - alternating pressure air mattress (prevents bed sores)
    - tray table for eating in bed (I had to make this myself; couldn't find it for sale)
    - waterproof mattress pads (buy two of the washable ones; the disposables cost too much)

    Later you can donate most of this stuff to the VFW for redistribution.

    It's also a good idea to have several pillows on hand for propping up. You can get these cheap at Kmart or somewhere.

    The alternating pressure air mattress is a wonderful invention, and I'm still amazed that no one told me it existed till I described the problem to a clerk at the medical supply store. However you'll want to put double sheets on top of it because the surface isn't particularly nice. It should be delivered and set up by the medical supply company.

    You'll also need a rotation of help on hand; lifting is going to be a problem. (Changing sheets is a challenge.) If you think you might need to hire someone, you could do a little info-gathering on that now. It may not be covered by insurance. Your county social work department may keep a list of people available to hire.

    Hospice is highly variable from county to county around the country. My friends in Chicago got 24 hour in-home care from hospice. We, on the other hand, got offered an LPN for half an hour a day, which wasn't much use to us because we already had a county public health nurse stopping by three days a week, and we all adored her and didn't want to trade her for a stranger. (At least in our area, hospice takes full control of health insurance, and other services can only be gotten with their approval. This may vary by county.) So stopping by and having a talk with hospice now to find out exactly what they offer --and what they expect in return-- might be a good idea.

    (We never did sign on with hospice, even though the hospice people did their best to convince us that it was impossible to die without them.)

    Bathing can be done by sponge bath. There is a special soap and waterless shampoo that you can use for this. I forget the name but they'll know at the medical supply store.

    Really, the most insurmountable problem we found, and that most people find, was lifting. If you can identify friends and family for that now, that would be helpful.

    Here's hoping you still have good times ahead, but the above is for when you need it.
    Last edited by GBMsibling; 09-13-2017 at 01:49 PM.

  9. #69
    One thing that was a Godsend to us was in-hospital financial assistance. My husband's hospital was wonderful. The Mayo in Florida was not but did write off the bill. They made me feel pretty bad about myself but I just did what I had to do. The other hospital paid what our insurance didn't for 2 years but I had to reapply each year. The Mayo just wrote off our bill and told me I couldn't come back. No problem But not having to worry about it those two years helped so much. I could concentrate on my husband.
    My husband was very incapacitated during his chemo. Like I said, this really isn't in the realm of this forum so I hope GBM doesn't mind. My son and I helped him to the bathroom and then gave him sponge baths when he just felt too bad to walk. We used a large bowl and glasses of water to brush his teeth. Wevdid have a medical toilet by his bed but he was loathe to use it. We played soft music in his room. Have you checked to see if your insurance would cover some health home care nurses to come in and help?
    During my son's brain surgeries, he slept most of the time. He had a benign epenyymoma (sp?) tumor that was removed but left him with epilepsy. His care was easier then my husband's. He preferred his father take him to the restroom and bathe him. The portable toilet was not allowed in his room. He was having none of that. I dealt with the meds and food mainly.
    I hope this helps a bit.
    His fight is over. How brave he was. 47 years of love.

  10. #70
    Thanks so much guys! I'll go ahead and do the stuff you guys mentioned and keep a list of things I may need later. And thank you for the advice. Helped a lot!
    I don't think he would be too happy about bedside commode either. Maybe diapers? He is too big to lift and take to the restroom. I'll have to look up the nearest Med supply store and see what all they have. Thanks so much.

    Ps- he is doing this thing of blaming his doctor for not starting treatment early and saying she gave him temodar and it's causing his walking and speech issues.
    I don't think he has accepted it is a Tumor since it was something they could biopsy. Some form of denial?


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