One patient with glioblastoma still alive nine years later
by GoldDustWoman on Fri Apr 08, 2011 07:24 PM
Hi all ~
So as you know if you've read any of my other posts, my husband is doing great just 9 weeks out from 35 radiation/6 chemo treatments. He's eating, he can taste, he's working full time, he feels great, he has no pain, as he sees it the only side effect left is reduced salvia. Pretty awesome after what he's been through.
He is frustrated and concerned though because his energy level isn't quite where it used to be. He is tired after a day at work, he doesn't have the same physical strength, and he doesn't have the energy to go all day long like before. I keep telling him that this is SO normal! After what his body has been through of course he isn't going to be his old self in 9 weeks. But I don't think he believes it. And I understand why, he feels so great otherwise he has to be thinking that 9 weeks is enough recovery time. I am certain it's not.
So....tell me about your experience with energy level after your treatment ended. How did you feel and when did it improve? Or maybe you still don't feel quite the same - whatever your experience I'd like to share it with him so he knows what he's experiencing is totally normal.
Much love to you all ~ GDW
by Kazmo on Fri Apr 08, 2011 08:07 PM
I am now 5months post radiotherapy and some days my energy levels are zero.
I am really pleased thet your husband has not had many side effects, i am still suffering side effects from the radiation, my mouth and tongue still keep breaking out with sores.
Hope your husband continues with his speedy recovery. XX
by PopPop on Sat Apr 09, 2011 04:04 AM
Well, sounds like your husband is doing darn good in my book. But, he might be pushing himself too hard trying to make up for lost time. His body has been through allot, and even though he might mentally think he is fine, his body is saying something else.
I found this to be true also. I returned to work in a different field and I was told that I ran circles around the younger employees that were half my age, I was 58 at the time. When I got home, I needed at least an hour nap to recharge myself. It caught up with me finally and I started to slip more and more.
I spoke with my family Doctor and he told me that the radiation can cause us to be anemic and that the radiation plays havoc on our thyroid. If we don't produce enough TSH in the thyroid our brain over works trying to produce it and we get tired.
My Radiation Oncologist informed me that we might have to deal with this problem for at least a year if not longer. As it has been mentioned on here many times before, each of us react to treatment and recovery at a different pace and level.
Your husband has to learn to listen to his body and rest when it tells him.
My Best to Both of Yoou and Everyone Here
by steph_rn on Sat Apr 09, 2011 04:20 PM
Please tell your husband that his body has been a war zone and that it takes a LONG time to recover. I had a neck dissection, radiation......and went back to work 3 weeks after treatment ended. I made it.........and didn't miss any work.........but I was exhausted for months. It will be three years this summer.......I still tire out easily. Have his thyroid level checked...........most of us end up with low thyroid after we have been nuked! This can really make you feel awful; tired, cold, no energy, etc.
Your husband is one of the lucky ones..........he has NOTHING to be frustrated and concerned about!! 9 weeks recovery is just the beginning........
by Chrismd on Sun Apr 10, 2011 12:46 AM
Hi Gold Dust,
I ended treatment 10/25/06 (6-1/2 weeks IMRT with weekly cisplatin and erbitux, daily ethyol).
I was hugely exhausted and almost without energy. After about 3 months post treatment I simply assumed this was the new normal. Note that I continued doing light workouts all during treatment and post treatment.
In 2/07 my wife and I took a vacation along the coast of southern California, and that was a turning point (I don't know why). Thereafter my energy levels went up dramatically, which was a complete and wonderful surprise since I had succumbed to my lackluster energy levels. I can't say they went to my pre-treatment levels but I really felt great.
I will say that last year my energy seemed to drop off, and it turned out my thyroid function had deteriorated over time and I now take synthetic thyroid hormone - which brought my energy levels back up.
So, tell your husband to not get too discouraged and give it some more time.
by jalind on Sun Apr 10, 2011 09:46 PM
Fatiguing easily is to be expected, and with most it doesn't go away very quickly, sometimes lingering for a couple years, even with strenuous workouts several times a week. Thyroid should be monitored periodically to ensure it's functioning as it is easily damaged by radiation. How much thyroid risk there is depends on the specific radiation plan. Rad oncologists will protect it as much as they can, but it usually gets hit by some indirectly (e.g. scattering). The side effects don't stop when the radiation ends, they continue, sometimes for several years to include some effects emerging years later.
by REDVETTE on Mon Apr 11, 2011 03:21 AM
It probably took my husband a good year before he started to bounce back - he is 65. I know that age plays a huge role but I was sooo impatient - I booked us a cruise at 4 months out and all he could do was lie in bed. It was tough. He feels pretty good most days but still naps a lot. Chemo and radiation may cure the cancer but it has left my husband with many residual side effects and chronic fatigue is HUGE. We enjoy each day to the fullest! Life is good but not always easy. Hugs and prayers!
by theresam on Mon Apr 11, 2011 06:05 PM
How long is your husband sleeping at night?
During treatment and recovery, my husband didn't work, so he was regularly getting between 8 and 9 hours of sleep. Today is his first day back at work and I'm worried that he's going to go back to his old pattern of sleeping 5 to 6 hours a night. After what our husband's have been through, that's just not enough!
My husband is also a track coach (in addition to being a teacher) so when track season started, he went back to coaching first. That worked well because it only required a few hours a day. However, 2 weeks ago, he had a long track meet on Thursday and an all day track meet on Saturday. That completely wiped him out, but he only slept about 6 hours on Friday night. He was exhausted for days after that last track meet.
During this recovery time, extra sleep is needed. Unfortunately, once they resume work, they also start trying to resume their old bad habits.
by mark5004 on Tue Apr 12, 2011 10:43 PM
Post treatment, hormone production changes.
Depending on exposure, thyroid tends to drop off at an uncertain rate. This gets complicated by a prevalent approach by most physicians to focus on everything other than thyroid function. In short, many (most) force the patient to crash on TSH measured thyroid hormone levels before intervening with synthetic thyroid hormone treatment.
Those doctors suck, they do not even know what it is like for their patients. However, to their merit they face other hormone defficiencies that complicate the total picture.
I crashed until TSH of 27, rendering me incapable of any concentration. Don't let that happen.
by GoldDustWoman on Wed Apr 13, 2011 03:16 AM
Thank you all so much! This is such great information - from all of you. Not only can I share your stories with Mark, but I am going to talk to his doctor about his thyroid. He is constantly cold and that is absolutely not like him at all. He blames it on being "too skinny" but he was skinnier than this when we were married and he wasn't cold all the time then! I am certain now that his thyroid levels are messed up. I'll ask to have them checked next week when he sees his doctors.
You all are so awesome! Thank you for your help!
Much love ~ GDW
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