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Update on husband
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I haven't been posting for a while because we had gotten past chemo and things were calm. We even got permission to travel from Chicago to Florida for a month. The first 2 wks were great and then my husband started having problems with tremors. They got worse as we packed to come back to home. I took him to the ER and they found a brain tumor. The Illinois oncologist didn't really think we should could home but they loaded him up with steroids and anti-seizure meds and with help I drove him home.
He had a golf ball size tumor removed 9 days ago and is now in acute rehab. He is like a post-stroke victim. Without the brain surgery, they said he had 4 - 8 wks and he said he wanted to fight. In retrospect a lot of the symptoms he had that were attributed to chemo side-effects were probably the brain tumor. I'm not sure what we're doing here since abdominal masses have increased as well. The medical oncology people tell me we have to treat the brain before doing anything else. The Florida oncology people said that chemo for the EC does not work on brain tumors. They also said that the EC will get him before the brain tumor will. Glad to see some of you are doing better than we are. margaret Posted on 06/30/12, 06:47 am |
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Hi Margaret. I'm so sorry to hear of the turn of events following your husband's past chemo treatments. I know this must be very hard on you, as well, having a loved one go through so much. I have you both in my prayers. Thanks for giving us an update, I've been wondering about you. I haven't seen Patrick post of late, but he was dealing with brain tumors after having Ec. He said he was told it was rare for it to go there, but let's face it - it kinda has a mind of it's own. We're forced to go where it goes and - I'm like your husband and - believe I'll fight it as long as I need to and can. Let me know if you need a listening ear and I'll send you my # through private mail. Brenda 
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Margaret, I am so sorry to hear this. Hugs to you - I know how hard it is to be a caregiver when it seems like you're fighting an insurmountable beast. Prayers going up for you both.
Margi
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Margaret,
I'm sorry ya'll are having to deal with all of this. There is an EC patient named Patrick Lacey, whose EC had metastisized to his brain. He was always helpful, and I hope he is doing OK. Patrick (and I, 1 time) had many brain lesions removed by a radiation treatment called CyberKnife. It is a highly accurate radiation device with millimeter accuracy (I had a cancerous lymph node on my spine removed with no I'll effects). You may already know about CyBerKnife (it is an out growth of the GammKnife), or it may not be applicable to your husbans' situation. I'm not trying to create false hope, but you should at least know about it. Many hospitals have them. Regardless, we'll continue to pray for you all. All the best, Fred
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Thank you all for your support. My husband is doing much better. The first days were hard but he can "walk" his wheelchair down the hall, do steps in PT, and walk 150 feet with a walker. He still has some lingering issues about higher level logic processing but he is doing really well. He is scheduled to come home next Tuesday.
We were also told that it was rare to go to the brain. Fred I hadn't realized you had had brain problems as well. I want you to know that I use your story to encorage my husband every day. They want to do cyberknife on him to be sure everything is gone. One the positive side someelse told me about an EC pt who had brain lesion removed and is back to playing golf. Tom doesn't golf but we could at least get out a bit when this crazy heat breaks. Again. thanks for the kind words. Margaret
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Hi Margaret:
When I re-read what I wrote, I realized it was a bit confusing. My friend, Patrick, had EC metastisized to his brain. He had 20+ CyberKnife "shots" to his brain. I had 1 "shot" to a lymph node on my spine, but I did not have any "shots" to my brain. I did have several TIA's (small strokes associated with EC) back in November. I'm on meds for that. Patrick had both CyberKnife and full brain radiation treatments. The full brain treatments were very hard on him. The CyberKnife was much easier to tolerate. I think you will like the CyberKnife. While it takes time to setup, the treatment was fairly easy, and I noticed only slight fatigue afterwards. I prefer it to regular radiation treatments. I'm curious if your docs think the Xeloda pills (chemo) would have any positive effect in slowing down the EC. I have not heard of anyone trying it for the brain. It might be worth a look. You seem a little more encouraged than before. That sounds good to me. Here's hoping for continued improvement. All the best, Fred
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