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I'm not sure where to go right now, so this thread seems as good as any. In November 2007, my partner began having severe headaches. He soldiered on through the holidays, headaches getting worse, but finally went for an x-ray in early January 2008. Of course, it was a brain tumor: stage 3 GBM. It was removed surgically and he went on Temodar combined with radiation. His last round of chemo was this January. He had his regularly-scheduled MRI earlier this week, where they found some "enhancement" or "spots" in the place where the tumor was. Today, his doctors basically told him that the cancer is back, and that there appears to be a tiny new tumor in a different area, behind his right eye. I'm still in a little bit of shock, as there was nothing on previous MRIs, the last in November. He's going in for a PET scan next week, we assume in preparation for a gamma knife procedure. Anyway, I'm just hoping for a small miracle and reading about other people's so-far-successful battles is good.
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Feb 27, 2009 18:17
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Hi, Nannypea, Dick, and all the others in this thread dealing with brain tumors. I've posted in here before, but need some encouragement, strength, and advice once again. Some backstory: my life partner was diagnosed with glioblastoma multiforme in January 2008. The tumor was resected, and he underwent therapy with Temodar and radiation. In March of this year, he had a recurrence in a different area, and was treated with gamma-knife surgery. Afterward, he was put on 8-12mg/day of dexamethasone (steroids) to control edema. In late May, because of the horrible side effects of the steroids, he stopped taking them, unbeknownst to me and his doctors. His brain swelled, and he was hospitalized for several days to control the edema and pain. Two weeks ago, again after trying to self-taper on steroids due to side effects, his brain swelled and he was hospitalized. (I know, he's a stubborn sh*t! That's not what I'm here to discuss!  )Anyway, my partner's neurosurgeon says the MRI taken two weeks ago shows necrosis and fluid in both former tumor areas, but no evidence of new or growing tumor. His oncologist basically agrees with that diagnosis, and further agrees that my partner needs to get off the dexamethasone because of the side effects. On Thursday, they began bi-weekly treatment with Avastin. The oncologist says this will allow my partner to taper off steroids, perhaps completely, within 30 days or so. Right now, my partner is extremely fatigued, has lost muscle mass because of the steroids, and is feeling very depressed. I am doing what I can as his life partner and caregiver, but it's rough for me, too. So, I guess I need some uplifting from Goons who have gone through this, or can at least give some realistic expectations of what Avastin will be able to do for him. We are both encouraged by the neurologist's view that there's no new cancer, but it's still a tough row to hoe. I have been very encouraged by the stories here, and I do believe my partner will be in that long-term GBM survival category as well, but it's hard. I would love to hear from both people who are dealing with this disease, as well as their caregivers, if for no other purpose than to compare notes and commiserate. Thanks in advance.
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Sep 14, 2009 01:17
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An update on my partner, whom I've written about infrequently in this thread. He was diagnosed with glioblastoma multiforme (GBM) in January 2008. T has been dealing with weakness in his legs since mid-September. We're told it's from the steroids he takes to keep brain swelling in check. He started on Avastin at about the same time. On October 12, for reasons unknown, a blood clot hit his lungs and just about killed him. The hypoxia caused some stroke-like damage to his left arm. T was in the hospital until this past Friday, when they moved him into a rehab center to help him strengthen his legs and regain use of his left arm. T's doctors say that he is in remission from GBM, and in fact his scans look "miraculous" (their word). There is no sign of tumor progression. His lungs are clearing, and his oxygen sats are where they should be. The physical therapist says he should be back home in about two weeks, and he should be able to start back on Avastin soon after that. They will be weaning him off the steroids at the rehab center. The last three weeks have been hell, and I'm sure the coming weeks will also be hard. I'm hanging in there as best I can. Thankfully, I have help from many friends and family. I'm not sure how much time T has left, but his doctors remain fairly optimistic. I'm trying to remain optimistic too. My prayers and best wishes to all of you dealing with this terrible disease.
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Nov 3, 2009 17:08
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Hi, Nannypea et al. I haven't done an update in a while because the last couple of months have been absolute hell. My partner is now on hospice and not expected to live much more than a few weeks. He wasn't progressing with rehab after a blood clot/stroke in October. Eventually, he became totally paralyzed on the left side. Insurance would no longer pay for care at the rehab center, so I took off work and cared for him at home for a few weeks around Christmas and New Year's. He continued to decline, and the pain in his head got much worse. Hospice stepped in, and we moved him to a nursing home about two weeks ago. Hospice has his pain under control now, but the cancer is obviously growing and spreading. He can no longer see out of his right eye, sleeps 20+ hours a day, and when he is awake, he stares off into space and is totally confused. His short-term memory is gone. He's on high-dose pain killers to keep him comfortable. The situation is almost overwhelming. I cry at the drop of a hat. Our home seems so empty now. Our family and friends have been VERY supportive... without them, I'd be a total wreck. My work has also been very supportive. We were able to sketch out a "celebration of life" service before his mind completely went, so I've been making those plans. He wants a party, not a funeral, so I am going to make that happen. It's almost too much to think about life without him, but I know that I'll be confronting that reality sooner than I expect. My best wishes to all of you fighting this disease.
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Jan 25, 2010 01:06
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After a very brave and courageous battle with cancer, my partner passed away on Monday. I'm still having trouble believing it. He was so young and full of life, and I hate what cancer did to him in his final days. I know he's at peace now, with no more pain, no more suffering, and no more cancer. I miss him so much, and although I thought I was prepared for the end, I wasn't. Monday was, by far, the worst day of my life. I take comfort in knowing that he's watching over me now, taking care of me like he promised he would. I also know that I will see him again someday. He taught me a lot about life and living with no regrets. I just hope that I can be even half the man he was, and to continue his legacy the rest of my days. Thanks to all here who have kept us in their thoughts and prayers. Yes, you may just be random Internet strangers, but there is a bond forged by our experiences with cancer that cannot be denied. Again, thanks. Rest in peace, my sweetie. I'll see you soon. I love you.
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Feb 12, 2010 15:41
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That's great news, Nannypea!  As for me, it's been a little over two months now since my partner passed away from brain cancer. I miss him everyday, and even talk to him every night before I go to bed, but I don't cry at the drop of a hat anymore. The pain is diminishing, and I think the fact that I'm back on anti-depressants is helping as well. I'm signed up to do the ACS Relay For Life in our area, as well as the Komen walk since that was also a cause dear to his heart. And once I get the life insurance settled (it's been a fight from day one  ) I plan to endow a scholarship at his alma mater.
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Apr 13, 2010 15:07
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Solaron posted:If you don't mind me asking, how old was your partner? The thought of losing my wife to cancer (let alone at all) is terrifying. He was 39 years old, and yes, it was terrifying. I still vividly recall the night at the hospital when we found out he had cancer. quote:Good job on the relay, and I really hope you're able to get things worked out with the scholarship - that would be an awesome legacy. Thank you. I feel it's important to keep his memory alive, even though that chapter of my life is coming to a close and a new one is just now beginning.
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Apr 13, 2010 22:37
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drat, and only 21 years old? That's harsh. Here's to you, Bob Vance. And to his family, if you're reading this,  from across the miles from someone who has also lost a loved one to this horrible disease.
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Apr 16, 2010 15:13
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bellybutton posted:gently caress cancer. This needs to be re-emphasized. gently caress cancer. I wish Rasser had been around when I was dealing with my partner's illness. There are times that I feel the doctors were blowing sunshine up my rear end instead of telling me how dire the situation really was. And I suppose I was also in denial. On a happier note, I was one of 71,805 people who took part in the Komen Race for the Cure in St. Louis last weekend. I'm told it was a world record for this type of event. All I know is, there were a LOT of people... and it was hotter than hell by the end.
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Jun 15, 2010 20:32
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Nannypea posted:Good News! I saw the neurologist yesterday and she confirmed I'm doing great. In fact she commented on the change from when she first meet me to now. I was originally hairless with loads of issues and now I had gotten the seizures under control and looked beautiful with hair. She doesn't mind if I take Adderall and I don't have to see her for another 6 months. That is GREAT news! I needed to hear something uplifting after the week I've had.
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Jun 18, 2010 20:46
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bottles and cans posted:I lost my Dad in September to a Glioblastoma Multiforme. Six months between diagnosis and death.  My condolences on your loss. I lost my partner to GBM in February. Cancer is a bitch, and I wouldn't wish it on my worst enemy. I actually came back to this thread because I'm having a little bit of difficulty dealing with the holidays. Christmas was my late partner's favorite holiday, and this will be my first one without him. I broke down crying this afternoon when I heard one of his favorite carols. It helps to hear the good stories from you all in your battles with cancer... and special thanks to Nannypea for the "finding a new normal" speech. I needed that reminder.
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Dec 16, 2010 05:27
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Wren, you are in my thoughts. I think docdued said it best: cancer is just pure, random evil. If I had a wish, it wouldn't be for world peace, it would be to eliminate cancer. It's coming up on a year now since I lost my partner to glioblastoma, and I still miss him everyday. All my best to you and everyone else fighting this disease. gently caress CANCER!
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Feb 1, 2011 19:18
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Can I just reiterate gently caress CANCER! My brother-in-law has just been diagnosed with oral cancer. He's 31 and has two kids. He dipped as a teen, but hasn't done it for years now. He's going in for surgery next week. gently caress CANCER. My sister-in-law has been having terrible headaches for about the last month. They finally did an MRI this week, and found a tumor the size of a marble. She's 29 and also has two kids. Her quack of a GP says she can wait another six months for another MRI, since "only cancer grows." Whatever.  I told her she needs to find a new GP, go to a neurologist, and demand a PET scan. I can't say that she definitely HAS cancer, but I know this is how my late partner's cancer started out. gently caress CANCER AGAIN.Goddamn this loving disease.
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Mar 25, 2011 03:12
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Wren, you are an amazing human being. Words can't express how much I admire and even envy you. You are a gift to humanity. I hope you know that there are people, all over the world, who are lifting you up in love and support.
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Jul 30, 2012 05:20
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I can't say it any better than others already have. My thoughts are with you both, Wren and ExoticCorpuscle. And with you as well, Sad Mammal. May you all find peace, strength, and most of all love.
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Aug 7, 2012 05:25
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Rest in peace, Wren, and condolences to you and yours, ExoticCorpuscle.
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Aug 9, 2012 03:01
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