Fatigue & Weakness Following Temodar and Radiation

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Fatigue & Weakness Following Temodar and Radiation

by caring_daughter on Sat Nov 26, 2005 12:00 AM

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Hello to all of the strong, courageous people who are fighting GBMIV. My dad had tumor resection on Aug. 29, 2005; completed his radiation treatment on Nov. 17 along with his first course of Temodar 140 mg which he took for 42 days. On Nov. 18, he became extremely fatigued and physically weak to the point that he was almost unable to get out of bed in the morning. This has been complicated by a sudden drop in his blood pressure when he stands up so he is in the midst of medication adjustments for his blood pressure too. I am wondering if others have experienced this level of fatigue and physical weakness following completion of temodar and radiation therapy. My dad is 67. My dad also reduced his decadron dose from 8 mg/day to 6 mg/day on Nov. 18. Could this be a cause of his problems? He is supposed to start his initial cycle of Temodar 280 mg on Dec. 12. Will his dr. postpone this if he isn't feeling stronger and more energetic by then? What might he expect in terms of physical effects when he does start the increased dose of Temodar for 5 days? I would truly appreciate any suggestions, input, ideas you can share with us ...

Caring

by Garland on Sun Nov 27, 2005 12:00 AM

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I think any sudden change in medication is a jolt to our bodies. You see what it does when we start taking something we're not used too...If i read right, he dropped his steroid 2 mgs in a day...thats a big drop. i know we are all different but,I started on 24mgs of decadron in March 05 and my doc has just now reduced me gradually to where i am on 8mgs a day. that stuff is powerful and he needs to be weaned off it. no sudden drops. Sometimes fatigue sets in at different times. I've been that way early in the morn, and sometimes i didn't think i could climb the stairs at night. Let his doc know explicit details of these changes and he may change his schedule on the Temodar. When i changed to the larger dose, i took the zofran according to instructions and the took the larger dose of Temodar and never noticed any change. good luck and keep us posted.

Symptoms

by Babysis34609 on Sun Nov 27, 2005 12:00 AM

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Hello my 13 yr old son has just went through the same thing. He had undergone the radiation and temadar. He was on The steriods also. His dosage was started in Aug when he was diagnosed and he just went off of it in Oct. But here he is back on it since he had a relapse. That steriod is strong. Between that and the other stuff you have to endure, you are worn out. My son still sleeps the day away. He has no energy at all. Radiation is powerfull and it will affect your body. So just give your dad time for his body to adjust to all the things that are going on. Its not easy, but it does take tim. I hope this info can help you.

Caring Daughter

by Daddysgirl_5 on Mon Nov 28, 2005 12:00 AM

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I had chills as I read your post. So many things you spoke of reminded me of my father who was also diag on Aug. 29, 2005. They did a partical resection followed by radiation, tried temodar but he had an allergic reaction to it and is now taking BCNU every 4 to 6 weeks. My father is 65. He was taken off of the steriods after about 6 weeks but a couple of weeks ago they put him back on it twice a day. His last MRI showed signs of no new growth. We are now waiting till January until the next MRI to see what it shows. Just wanted to say hang in there and remember you are not alone. Daddy's girl Rhonda

Fatigue & Weakness After Radiation & Temodar

by caring_daughter on Wed Nov 30, 2005 12:00 AM

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Thank you for replying to my concerns about my dad. It helps to know that others have felt this way following their treatments. In comparison to one week ago, my dad seems to be walking a little taller, experiencing more stability when he does walk. My family was guessing that it was his body responding to the number of medications that he now takes, in addition to the radiation treatments and the temodar. We are definitely willing to be patient as long as my dad is patient with himself and his progress. Take care. Rondi

Daddy'sgirl/caring Daughter

by caring_daughter on Thu Dec 15, 2005 12:00 AM

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Dear Rhonda, I appreciate what you and your family are going through since your dad's diagnosis on Aug. 29. I can appreciate that you had chills reading and responding to my e-mail as our dad's are dealing with similar challenges right now. You mentioned that your dad is 65. My dad is 67. My dad his first post-radiation MRI on Dec. 1 only two weeks after his final radiation treatment. There was no evidence of new growth for which we are very thankful. My dad is gradually regaining a small amount of his strength now. The oncologist postponed his first cycle of higher dose temodar until next week as my dad was just starting to get a bit stronger. Would you be willing to share more about yourself and how you are dealing with things. My dad's tumor affected the temporal lobe. Since radiation treatments, he has lost so much of his cognitive and speech functioning. Of course, we love him no matter what his level of functioning. Also, his vision has been terrible since his surgery as it left him with a severe right field cut so he cannot see anything to the right without learning to compensate for this. he hasn't been able to drive since finding out about his tumor. He is coping so courageously with all of the sudden losses that have come his way. He is such an inspiration. A little about me ... I am the mother of three, including an almost 15 year old daughter and 9 year old twin sons. We live about 70 miles from my mom and dad right now in northern MN. My husband is so supportive and manages things on the homefront when I need to be/want to be with my parents. I hope that you too have a supportive, encouraging support system as well. I hope to hear from you, Rhonda. I hope that your family has a wonderful holiday season and truly treasures the memories as we are trying to do ... Write to this subject line when ever you have a chance and maybe we can support each other. Can you believe that my name is Rondi! Without sounding "flakey", perhaps we were destined to cross paths on this message board to be supportive to each other. Take care, Rondi

Caring Daughter

by Daddysgirl_5 on Fri Dec 16, 2005 12:00 AM

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Rondi it was very good of you to write. There have been so much that has happened since dad was first dx I don't know really where to begin. After starting his radiation they started him on temodar, he had a severe reaction to the drug and tried to continue taking it but over the course of the first week the doctors took him off. He had developed a rash more of a severe sunburn over 90% of his body. Dad said the only good thing about the rash it didn't itch. They waited another week, cleared up the rash and tried again. Same affect, so they took him back off the temodar and starting giving him BCNU every 4 to 6 weeks. He had a MRI a week after his radiation had been completed and the MRI showed no signs of new growth. Everyone was very encouraged by that and now we are waiting till the 6th of Jan. for the next MRI. I'm sure you can relate to how this disease can change everyone's lives that are remotely close or connected to the person that has it. For my husband and I our whole lives changed. The day dad came home from the hospital is the last day we have been to our home. We moved in with my parents. Not only do we have my dad's health to be concerned with but my mother is disabled as well. She had an illness in '94 that has left her dependant on others and my father has been her sole caregiver since she got sick. Luckily my husband has been a great support in all of this, I don't know too many men that would do what he has done these last 4 months. But it sounds like your husband is in the same league as mine, great guys. My father has a very strong sense of faith that he is leaning on. He believes God is going to heal him and will not think otherwise. I'm hoping he does get his miracle he so prays for. Luckily my children are both grown and my husband's daughter is grown as well, they have all been a great support with their granddad. It's been very hard for dad loosing his independence, hard for him to accept help with daily activities but he is doing quite well with that. It's hard for me to watch what he is going thru, wish with all my heart there was more I could do for him. Right now I'm working everyday and getting ready for the holidays. enjoying all the days that we are given. That I try to keep in the front of my mind, be greatful for today and pray for tomorrow. I'm not sure if I've written anything that will be of any help to you or give you any insight to what we are going thru with this disease, but I'm so glad you wrote and would like very much to keep in touch. We are located in the great state of Oklahoma, close to Tulsa. Keep in touch and let me know how your dad is doing and how you are doing as well. Rhonda

Caring Daughter

by Daddysgirl_5 on Sun Jan 01, 2006 12:00 AM

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Dear Rondi, I've not heard back from you since my last post and wonder how your dad is doing and how you are doing. Crazy time of year with the holidays, all the hustle and bustle. If you get a minute write and let me know how you are doing and how your father is. My dad goes back the 11th of January for his next MRI and sees the doctor on the 12th to find out the results. I would be lieing if I said I wasn't nervous about what we are going to find out. He seems to be doing pretty good right now but the last round of chemo hit him pretty hard took him about 4 days to really get his strenght back and the chemo seems to affect his memory a lot or I guess it could be a combination of the chemo and the cancer. It's hard to know and the doctors seem to be only able to give you sterotypical answers to questions. Dad's not really had any side effects to the treatments other than being tired but they always ask the same questions, he says it's almost like they are wanting to hear his been sick, really pisses him off. But then again I'm not sure he would tell them if he had been sick, he's not one to complain. Well I won't keep you any longer but if you do have a chance let me know how things are going for you all. Take care, Rhonda

Daddy's Girl/caring Daughter

by caring_daughter on Mon Jan 02, 2006 12:00 AM

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Dear Rhonda, It was good to hear from you again. I apologize that I haven't had time to write back with the holidays being so busy. My kiddles head back to school tomorrow. My dad made it thru his first week of double dose Temodar. He did quite well thanks to the Zofran. He is weaning off of his decadron also and is taking only 1 mg/day. I have noticed that he has become quite heard of hearing and his speech and thoughts are more difficult to decipher. I will talk with my mom and see if I can check with the oncologist tomorrow. My dad has been extremely weak yet. He is now coming down with a cold no matter how careful he has been not to be around sick people. He cannot see well at all since his surgery due to a right field cut. No further improvement is expected according to the eye dr. His vision is almost a little worse I think. Another issue where weaning from the decadron may not be the best right now. We did celebrate Christmas together. My mom, dad, and nana came to our house and stayed over for two nights. It was nice to be together. Part of me is so depressed when I think what the year could bring for my dad. he has been thru so much in the last 4 1/2 months. He is beginning to get frustrated by his lack of energy and extreme tiredness. He is also in need of more help than he wants. My mom needs to have a hip replacement surgery in the next month or so. They will need to move in with us even if they don't want to, especially when neither of them will be able to drive. Does your dad take decadron? What is his current dose? Have the drs. weaned him from it? Does your dad have any problems with speech, memory, or cognition since his surgery? It seems like my dad is encountering every possible complication ... We are trying to surround ourselves with hope and trust in God's faith and grace. Like you, I cherish the moments with my dad (and mom as well) and hate to see him go thru so much. Anyway, I hope that your family enjoyed a nice Christmas. May 2006 be a time of blessings and miracles for your family and your dad. Let me know how your dad's MRI goes this month. I will keep all of you in my prayers. God is definitely listening .. Take care, Rondi

Caring Daughter/daddy's Girl

by Daddysgirl_5 on Tue Jan 03, 2006 12:00 AM

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Dear Rondi, I'm glad to hear from you. Good to hear the holidays were good for you. To answer a few of your questions. Dad is on decadron and yes they did try to wean him off actually took him completely off for a while but with the swelling and fluid on the brain still the doctor's put him back on 4mg. 2x's a day. There was a marked difference when he went off and when he went back on it, for the better when he started taking it again. The other things you spoke of, speech, eye sight, memory and hearing are all things dad has problems with as well. I see the biggest difference right after he takes a chemo treatment, he sleeps a lot more the first week after chemo and his memory isn't as good as it was before the chemo. He has an appointment with his eye doctor this week but I'm afraid he's not going to get the news he's hoping for there. He does get extremely frustrated more easily these days, doesn't seem to take much to get him going, which isn't the norm for my dad, usually he's very easy going and has always had a lot of patience with my mom, but these days there isn't a lot of that. I've also noticed when he gets stressed his memory and speech are more affected, takes him longer to find the words he's looking for. For the most part he sits in his chair and watches TV and sleeps. When he does try to do something else, putter in the garage or in the yard it really seems to make him extremely tired and weak, but he keeps trying. Has your dad had any weight gain from the decadron? Dad's face has gotten very full in the cheek and chin, this accourding to the doctors is a side affect of the medicine, plus he seems to eat alot as well, another side affect of the steriods. My son who is 26 just left out yesterday for the Army. He and my dad are very close so yesterday was pretty hard for him. Keep me posted on how you and your father are doing and as soon as I know something next week about dad's MRI I will let you know. Take care and you are all in my prayers. Rhonda
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