sherryhalpert

Sherry,

How is he doing, and how are you?

Johanna

Still catching up on posts that I've missed, Sherry... you asked about Merv's prognosis; his neurosurgeon told me 'about a year from diagnosis', which was in May of this year. The statistics say the median survival time with radiation and chemotherapy is 14 months, but I understand that for patients over 60, the odds are worse. The 2 year survival rate for men over 60 is 4%. (This is for Glioblastoma, mind you, which is the most aggressive tumor type.) He has 5 tumors. The largest of which is enmeshed in his motor control strip, left frontal. No, we don't have kids. A double-edged sword, as we don't have to worry for them and how they are handling it... on the other hand, we are sort of alone in this fight. He comes from a large family, but most are out of town and 2 siblings also have spouses in palliative care, so have their hands full. I am trying not to call in the troops too early. I am pretty sure that there will be days ahead when I *really* need respite, and so I'll try to wait to ask for help as long as I can. I have not really taken much time for myself so far. I have friends who are always telling me I must do it, but I can't see myself relaxing at a day spa while worrying that my husband may have fallen at home and be lying on the floor waiting for me. Again, I know I will need more of this in days to come, but for now I feel I am holding up fairly well. How about you? Family support? Are you managing your own emotions and health pretty well so far?
Keep in touch. I'll try to check in more regularly! xx Jill

Thank you for your kind words of encouragement to amontoya. She is the primary caregiver for my son (who has the testicular cancer that is not in remission after chemo). I am in another state from them and wish I could be there more. Any suggestions on what I can do at this point would be much appreciated; I feel so helpless right now but I do still have hope; there is no other way.
I will keep you in my thoughts and prayers on this journey.

Today was the day we Christians get to light candles. We only get four and instead of lasting eight days they have to last four weeks. The lighting of the first candle includes a mention of our elder brothers and sisters, the Jewish People

Sherry, I don't know if you are a facebook user, but I've found the Glioblastoma group there to be very helpful/comforting. There is another group for Oligodendroglima; I don't know if you are interested, but their group is found at: https://www.facebook.com/groups/445231562261899/?fref=ts

Hi Sherry! Sorry, we've been plagued by a succession of things breaking down around the house and have been shopping for and having installed various things, (toilets, lights, dishwasher, hot water tank)... so haven't been around much. Merv is having a good week! I think the change in his Dexamethasone from 2 mg every other day to 2 mg each day has been a very positive thing. He's much more balanced and feels stronger. Hope things are going well for you two, too. xx Jill

Thank you..let's please stay in touch. My husband was diagnosed with stage IV colon cancer 8 months before his heart attack. It wasn't easy being the caregiver at times but as you know every minute is precious and made it all worthwhile. I'm here for you anytime you want to talk. Take care of you and let others help. This, I know!

Dear sherryhalpert, omg that brought me to tears....that's just what I needed to hear. I just should be so very thankful that I don't have cancer yet I guess I am stuck in this emotional turmoil. I'd like to read the book you mentioned. God bless you and thank you again,
Donna

Hi Sherry,

My husband (63) was diagnosed with glioblastoma multiforme (GBM) in May. If I understand it correctly, GBM is a more aggressive type of tumor than Oliogodendroglioma, but those differences aside, I think we share some common experience.

DH's first symptoms were facial twitching and focal seizures; he didn't have any headaches. He also thought he was having a stroke. He had a craniotomy to remove tissue for biopsy purposes, but his tumor is embedded in his motor control strip, so it could not be reduced or removed. Even digging for biopsy tissue was fraught with the danger of temporary or permanent paralysis. Fortunately, he aced his surgery with no motor deficit.

However, he is continuing to deteriorate in terms of balance/speech/memory. The speech and balance problems are demoralizing and it is a challenge for both of us to keep a positive outlook, but we try! We had a tough week because he had a new seizure for the first time in 3 months. However, an adjustment of his 'Dex' quickly set him right.

DH also had 6 weeks of radiotherapy with concurrent oral chemo (Temozolomide). He continues chemo each month for 5 days on/23 days off.

I'm glad you found your way here to 'What Next'. I come here to learn from other people's experiences, inform myself about my husband's condition, and gain useful ideas and encouragement when I feel like I'm in over my head. Nice to *meet* you! Sending you warm hugs from Canada, xx Jill

Hi Sherry. My tumor is an oligodendroglioma. Grade 2 or 3, depends what lab you believe. I finished chemo in May, 2001. I have been able to resume my life. My husband, who was my caregiver, passed away in October, 2001, of a sudden heartattack. I have lived alone since then. I am able to work full time, but sometimes I get really tired. I have no choice, there is nobody else to pay my bills. I do have family, but so far I haven't had to rely on them. I posted on this site as hope for other people. Don't get me wrong, it hasn't been easy. After my surgeries, I had speech therapy and occupational therapy for weeks. I was diagnosed after a seizure as well. Positive attitudes help a lot! I stayed positive and my husband tried to stay positive for me. I am currently having an MRI every 6 months, and my oncologist is following me. Take care of yourself as well as your husband. I am praying for both of you and hoping that you have good luck with the treatment. Please let me know how it goes. Take care.

My tumor is the same! Just had 2nd tumor and 2nd surgery. starting Temador pills again, the doctors call it "maintence" chemo, which I don't understand unless it is because my first was 3 years ago. The whole thing is unpleasant. My hair is gone from the top of my head in a circle, so I wear a hat alot. I have many and like them, I have also been told that I have a nice shaped head, so I like going without anything on my head.

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GregP 3X Survivor
Team WhatNext Community Mgr.

Hi Sherry. Welcome to What Next. There are a lot of great people here. I'm glad you found us but sorry for the circumstances that led you here. Wishing you and your husband all the best.

Welcome to the WhatNext family! The WhatNext family is made up of people like you who are looking for help or looking to help others. To help you along your journey the WhatNext family has put together a Beginner's Guide to Cancer that I highly recommend you check-out here: http://bit.ly/10BQKCi. Also, please do not hesitate to reach out to others or ask for help.

Wishing you the best.

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