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Long term effects after brain tumor removal

ronefx
Posts: 11
Joined: Jan 2009

I posted this in the Brain tumor section but it might belong here:
I am just curious as to other suvivors stories, I had my tumor( grade 3 astrocytoma right frontal lobe) removed in 1993( 18 years old) and went thru 6 weeks of Radiation and a years worth of Chemo. I am 34 now and I have always felt run down. I have some good days where I can get a lot done, but some days I do not want to get out of bed. I have tried vitamins and supplements, caffine pills, my family doctor prescibed me adderall, which helped out, but its expensive and I do not have presciption drug coverage so really can not afford the medicine, so I stopped taking it. I seem to get fatigued easily and have shortness of breath. I have tried exercising which doesnt make a difference. I have had an e.k.g., x ray/ct scan of my lungs, and I am sure of other tests, just can not remember. I do not know if this is normal and this is how I am suppose to feel. I just feel like a hypochrondriac complaining to my doctor, but I am to the point that I have given up and just going to deal with it. Am I the only one or do any of you have any suggestions as to something that might help me out.

jenben59
Posts: 142
Joined: Jan 2009

I just happen to run across your message while looking for something else. The odd thing is I was diagnosed with an astrocytoma about 4 years ago. I had two brain surgeries and the results came back as grade 1 so I never had to have chemo. The thing is, it took me about a year to get back to as normal as possible. I have pretty bad short term memory and other side effects, but I never really was run down after I healed. The down side of all this is I was diagnosed in December with stage 3c colon cancer...another thing to overcome. I have found very good support (Online too) with American Cancer Society. I started chemo with the hospital, M.D. Anderson, and they don't think the patients are there to complain, they listen and help every way they can. I would try to get in touch with the American Cancer Society and find some help and support. You deserve it! Brain tumors are tough to handle. E-mail me any time if you want. Good luck.

eris
Posts: 1
Joined: Jan 2010

Hello, I am new to this website so I'm a little unfamiliar with how to maneuver around in here. My mom is 65 and first had lung cancer and 2 surgeries and radiation. Then they discovered her adrenal gland was enlarged but before they even ran tests on that she started having terrible headaches and trouble seeing numbers. She finally made an appt and the same day they had her come back because it turned out to be a 4cm tumor in her brain and they sent her to the hospital by ambulance that night to have surgery the next morning, dec 31. it is now jan 3 and she is home. I don't know what I'm looking for here, I guess I'm trying to find out what to expect and what I can do to help her. I live with her and my dad right now. She's always been energetic and independent, it doesn't seem like she's 65, except for here lately. She's supposed to talk to the doctors about chemotherapy and I'm scared about that and the emotional effect going through the sickness, hair loss, energy loss will have on her. If you have any advice please help.

Matty
Posts: 21
Joined: Aug 2008

I can relate to what you are going through. I had an ependymoma (brain tumor) at age 4. I had surgery and radiation to half of my brain. I never relized why I needed so much sleep to
feel awake. As a late effect from radiation your body requires increased sleep. The surgery
may effect fatigue as well, not sure. I am 47years old and never seem to be as energenic as
my older sisters. It gets very frustrating when you need to do something but it takes a long
time because you are tired. Your experiences are quite the norm for cancer survivors like us.
Chemotherapy does the same thing on your body as radiation(chemo brain). I hope my grammer or spelling isn't to bad, this is also one of my week areas.

breazea
Posts: 1
Joined: Sep 2009

Hi ronefx -- I had radiation treatment from the bottom of my brain to the top of my lungs 27 years ago for a tumor is my nasopharynx -- a little bit different location, but similar region. Anyway, do you know if your pituitary gland was damaged by the radiation? After my son was born 13 years ago, I discovered that my pituitary gland was damaged by the radiation -- the doctors called it atrophy to my pituitary gland -- I think of it in terms of a normal gland being like a grape & mine is like a raisin -- some functionality, but not much. Anyway, I've lately discovered that I believe some of my fatigue is due to the lack of hormones coming from my pit. Are you male or female (didn't look at your profile)? I ask because females hormones are rather different from male hormones :o) Anyway, something I found that helps get my energy level up (for a little while) is an herbal supplement called DHEA -- I take it twice a day & it helps with physical & mental energy levels -- might be something to ask your doctor about. My Endocrinologist suggested I give it a try -- I still get points in the day when my brain vegs-out but not ALL day -- so it helps.

I get frustrated because I had doctors for many years send me to couselors -- thus making me feel like I was making it all up -- fatigue, inability to think clearly / communicate effectively. Anyway, I didn't give up & I still haven't -- even though I feel better, I'm still not operating at 100% & I want to be there, just having a hard time getting conventional doctors / specialists to help me in a timely manner. They like to give you something & tell you to come back in 6 months........they don't seem to understand that life is slipping away & I want focus TODAY. Sorry to go off on a tangent -- let me know how you're doing !! Take Care -- God Bless !!

BrittaA's picture
BrittaA
Posts: 20
Joined: May 2009

Hi Ronefx, I am a survivor and was a caregiver to my father who passed away in 2007 from colon cancer. We both suffered from chronic fatigue while going through treatment. While caring for my father I couldn't find much information to deal with the side effects so I started a blog, www.CincoVidas.com, that focuses on the side effects of cancer treatment on the hair, skin and nails. I did a post on yoga for relieving fatigue and gaining some balance http://blog.cincovidas.com/yoga-restoring-minds-and-bodies-during-cancer%E2%80%94some-survivors-call-it-a-%E2%80%9Clife-saver%E2%80%9D. You can also check out the post on http://blog.cincovidas.com/ahhh-acupuncture-relieves-many-chemotherapy-side-effects . I hope this helps. Love, strength and survival Britta

Toshy's picture
Toshy
Posts: 23
Joined: Jul 2010

I was diagnosed when I was 7 with an astrocytoma, "on the floor of the fourth ventricle", the brainstem. Had radiation in late 70's and chemo in early 80's.

I still get headaches and I still get dizzy and I’m still tired more often than not but overall not bad compared to back then. In high school I was hardly more than a skeleton. Now I'm NOT! I have severe (weird) hearing loss and double vision.

I had a stroke last year.

Recently have seen a doctor at Cleveland Clinic who said b/c of the radiation I am prone to strokes and to new tumors were I was radiated. And recently read on-line somewhere that hearing loss is practically a given if your chemo included Cisplatin and my audiologist confirmed it.

Flav1234
Posts: 14
Joined: Jul 2011

Hi Ronefx

When I read your post; I thought my fiance had posted this.... he had a right front temporal lobe astrocytoma tumor removed but was benign. He is also 34 and suffers everyday. He has also been prescribed Adderall and it helps with his fatigue but also has bad side effects that I hate. If he does not take adderall he will sleep for days. His long term effects are extensive, he now mimics many mental disorders ie. bipolar, sschizophrenia with major depression because of the fatigue. He also has a counter full of vitamins and supplements and nothing helps. We search everyday for help and we have not found it either; so you are not alone.

Flav1234
Posts: 14
Joined: Jul 2011

Hi Ronefx

When I read your post; I thought my fiance had posted this.... he had a right front temporal lobe astrocytoma tumor removed but was benign. He is also 34 and suffers everyday. He has also been prescribed Adderall and it helps with his fatigue but also has bad side effects that I hate. If he does not take adderall he will sleep for days. His long term effects are extensive, he now mimics many mental disorders ie. bipolar, sschizophrenia with major depression because of the fatigue. He also has a counter full of vitamins and supplements and nothing helps. We search everyday for help and we have not found it either; so you are not alone.

Flav1234
Posts: 14
Joined: Jul 2011

Hi Ronefx

When I read your post; I thought my fiance had posted this.... he had a right front temporal lobe astrocytoma tumor removed but was benign. He is also 34 and suffers everyday. He has also been prescribed Adderall and it helps with his fatigue but also has bad side effects that I hate. If he does not take adderall he will sleep for days. His long term effects are extensive, he now mimics many mental disorders ie. bipolar, sschizophrenia with major depression because of the fatigue. He also has a counter full of vitamins and supplements and nothing helps. We search everyday for help and we have not found it either; so you are not alone.

Flav1234
Posts: 14
Joined: Jul 2011

Hi Ronefx

When I read your post; I thought my fiance had posted this.... he had a right front temporal lobe astrocytoma tumor removed but was benign. He is also 34 and suffers everyday. He has also been prescribed Adderall and it helps with his fatigue but also has bad side effects that I hate. If he does not take adderall he will sleep for days. His long term effects are extensive, he now mimics many mental disorders ie. bipolar, sschizophrenia with major depression because of the fatigue. He also has a counter full of vitamins and supplements and nothing helps. We search everyday for help and we have not found it either; so you are not alone.

Flav1234
Posts: 14
Joined: Jul 2011

Hi Ronefx

When I read your post; I thought my fiance had posted this.... he had a right front temporal lobe astrocytoma tumor removed but was benign. He is also 34 and suffers everyday. He has also been prescribed Adderall and it helps with his fatigue but also has bad side effects that I hate. If he does not take adderall he will sleep for days. His long term effects are extensive, he now mimics many mental disorders ie. bipolar, sschizophrenia with major depression because of the fatigue. He also has a counter full of vitamins and supplements and nothing helps. We search everyday for help and we have not found it either; so you are not alone.

Flav1234
Posts: 14
Joined: Jul 2011

Hi Ronefx

When I read your post; I thought my fiance had posted this.... he had a right front temporal lobe astrocytoma tumor removed but was benign. He is also 34 and suffers everyday. He has also been prescribed Adderall and it helps with his fatigue but also has bad side effects that I hate. If he does not take adderall he will sleep for days. His long term effects are extensive, he now mimics many mental disorders ie. bipolar, sschizophrenia with major depression because of the fatigue. He also has a counter full of vitamins and supplements and nothing helps. We search everyday for help and we have not found it either; so you are not alone.

Flav1234
Posts: 14
Joined: Jul 2011

Hi Ronefx

When I read your post; I thought my fiance had posted this.... he had a right front temporal lobe astrocytoma tumor removed but was benign. He is also 34 and suffers everyday. He has also been prescribed Adderall and it helps with his fatigue but also has bad side effects that I hate. If he does not take adderall he will sleep for days. His long term effects are extensive, he now mimics many mental disorders ie. bipolar, sschizophrenia with major depression because of the fatigue. He also has a counter full of vitamins and supplements and nothing helps. We search everyday for help and we have not found it either; so you are not alone.

Flav1234
Posts: 14
Joined: Jul 2011

Hi Ronefx

When I read your post; I thought my fiance had posted this.... he had a right front temporal lobe astrocytoma tumor removed but was benign. He is also 34 and suffers everyday. He has also been prescribed Adderall and it helps with his fatigue but also has bad side effects that I hate. If he does not take adderall he will sleep for days. His long term effects are extensive, he now mimics many mental disorders ie. bipolar, sschizophrenia with major depression because of the fatigue. He also has a counter full of vitamins and supplements and nothing helps. We search everyday for help and we have not found it either; so you are not alone.

Flav1234
Posts: 14
Joined: Jul 2011

Hi Ronefx

When I read your post; I thought my fiance had posted this.... he had a right front temporal lobe astrocytoma tumor removed but was benign. He is also 34 and suffers everyday. He has also been prescribed Adderall and it helps with his fatigue but also has bad side effects that I hate. If he does not take adderall he will sleep for days. His long term effects are extensive, he now mimics many mental disorders ie. bipolar, sschizophrenia with major depression because of the fatigue. He also has a counter full of vitamins and supplements and nothing helps. We search everyday for help and we have not found it either; so you are not alone.

Flav1234
Posts: 14
Joined: Jul 2011

Hi Ronefx

When I read your post; I thought my fiance had posted this.... he had a right front temporal lobe astrocytoma tumor removed but was benign. He is also 34 and suffers everyday. He has also been prescribed Adderall and it helps with his fatigue but also has bad side effects that I hate. If he does not take adderall he will sleep for days. His long term effects are extensive, he now mimics many mental disorders ie. bipolar, sschizophrenia with major depression because of the fatigue. He also has a counter full of vitamins and supplements and nothing helps. We search everyday for help and we have not found it ... this was posted in 2009 have you found help yet?

reena27
Posts: 1
Joined: May 2012

Ronefx, this reply is about 3 years late, but I was wondering how have you been since you posted? I have almost the exact same problem. I am 30 and had 2 surgeries, chemo and radiation as well. Anaplastic Astrocytoma on right pre-frontal cortex with radiation on both left and right sides of my brain. It's been almost 6 years and I still feel tired and run down after a day out. Like you, there are good days but then there are days where fatigue just overwhelms me and I have no energy to do anything. Like you, I don't like complaining to my doctor, family or friends because I feel like a hypochondriac...

Do you have any suggestions or have you heard any stories of people who share similar concerns? Any response would be appreciated, thanks! :)

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Hi Reena, I just saw this post and wanted to mention that I too had radiation to the head (for tongue cancer) and it damaged my thyroid. If you have NOT had your thyroid checked, ask your doc to do it (simple blood test). I have been taking synthetic thyroid meds (Synthroid) and it has helped me with the fatigue. There are still days I don't feel like I can even get dressed, but we are still playing with the dosages to get me back to normal.

When I saw your post about the fatigue, I thought I would reply. Maybe it will help your situation.

Pippie49
Posts: 1
Joined: Jun 2012

I live in Ms. And in Sept 2009, I was diagnosed with a brain tumor, I was having these weird head ora's that people had me believing it was nothing and all made up in my head, (Well lol, it was ALL in my head)), I found this fabulous general practioner and he was a doctor who TRULY listened before speaking, I told him what was going on and instead of like most doctors, making you come back for 3 different visits, he had an MRI and cat scan and EKG performed on me at the St. D's hospital. That afternoon I was informed I had an egg shaped tumor on the right side of my front lobe, it was benign and I thank God everyday for that, having an Uncle who passed from tons of spiderweb tumors in his brain, I lost my Moms sister in Feb 2010 from Melanoma then my own Mother from Esophogial Cancer in Sept 2010, 7 months from her sister, during my surgery, I hemorraged because of a biopsy gone wrong from the very start at another Jackson hospital, that biopsy was flubbed and nearly cost me my life, I went through two separate surgeries, my family was called in and I was completely reborn that very morning I awoke and to my left set my son, with tears flowing down his face thinking he was losing his Mother after he just lost his father May 2008, from a massive heart attack, I went through a year of chemo, Temodar, and always felt bad for myself until I saw what my Mother suffered through, Now I see it didn't even run a close second. But I was smoking and drinking before the surgery and afterwards I've NEVER had the taste or want for either, a true blessing from the Lord, but I have had problems breathing, now on a sleep apnea machine, seizure that just occur out of nowhere and was told I would probably have these the rest of my life. I was fired from my 8 year job (with a small good faith check), put on Diability and Medicaid, and thank you Lord for both. Because I had NO medical insurance or any other money at that time, Ive asked myself many times, they say chemo is nothing but rat poison and I tend to believe though it might prolong my tumor growth, i took it for a year and believe that is what polluted my body and the reason I have all my medical problems , I've also been seen as a Hyperchondriac now, I constantly have problems going on with me, I have emotional mood changes while on Prozac and Zanax, I have anxiety attacks constantly, I'm alone, nobody wants someone who's had these sort of problems, I've had relationships and though these men had faults, believe my mood swings had a great deal to do with it plus going through the change of life. I have my MRI's every 6 months and thus far are clear. YAYYY! Thank you Lord! If you question Gods existence, nearly die and you won't anymore. But I need to know if any of you have had emotional problems, personality changing in seconds like Dr Jekyll and Mr Hyde. My email is listed so please letme hear from you . Thank you.

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