Author Topic: Achey at 9 weeks post CK  (Read 3976 times)

sher

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Achey at 9 weeks post CK
« on: November 23, 2008, 10:34:05 pm »
Hi fellow ANers,

I am havin a hard time.. I am feeling like I felt right after CK. Achey and fatiqued and alittle depressed. Has anyone experienced this at this period after CK? Kindof in a vicious cycle right now... not feeling well, not cooking.. so not eating well, not exercising to gaining weight and no energy to pick myself up and make the changes I need to. Do you know what I mean? anyone?

Sher
1.2cm x 0.6 cm extracanicular component (7 mm) 05/08/08
MRI in AUG 08  showed 30 % growth
Having CK 9/30, 10/1 and 10/2/08
1/12/08 MRI shows swelling

SuzeAN

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Re: Achey at 9 weeks post CK
« Reply #1 on: November 25, 2008, 04:53:53 pm »
Hi Sher,

I remember feeling like that, so I hit the books on nutrition and added some supplements to my diet.  I wasn't taking any vitamins, but found after I start with a multi that had some iron I felt a bit better.  Then I started eating lots of fresh fruits and veggies, and an exercise routine.  It wasn't easy at first but energy level did get a boost. 

`Sue
2.5 cm, left side
CK-Barrows 10/05

goinbatty

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Re: Achey at 9 weeks post CK
« Reply #2 on: November 25, 2008, 05:01:51 pm »
So sorry you're having a tough time with side effects.  I had some fatigue after CK.  It seemed to return to a lesser degree probably 3x since then.  I try to get plenty of rest and take a short nap when needed if I can.  I've had a sedentary desk job for years and have not been the most compliant with exercise so I've added that.  I find that just getting outside walking helps me mentally also.  I hope you get to feeling better soon.
Sandra
1/2007 - 6 x 4.5 mm AN
8/2007 - 9 x 6 mm
CK at Georgetown 1/7/08-1/11/08; Dr. Gagnon
3/2008 - 10 x 7 mm
7/2008 - 9 x 10 x 6 mm (NECROTIC CENTER!!!!!)
5/2009 - no change/stable
4/2010 - 10 x 7 x 6 mm; stable/no change
5/2011 - 10 x 7; stable/no change
6/2012 - 8.1 x 7 mm
4/2014 - stable/no change

sher

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Re: Achey at 9 weeks post CK
« Reply #3 on: November 26, 2008, 12:13:38 am »
Thank you Sue and Sandra,

I have been drinking more water than usual and that is helping the acheiness some. I haven't been eating much, just haven't felt like it so I went to a salad bar and made me a yummy salad, it tasted so good. I must be deficient in some things as I devoured it.
Have a great holiday,
Sher
1.2cm x 0.6 cm extracanicular component (7 mm) 05/08/08
MRI in AUG 08  showed 30 % growth
Having CK 9/30, 10/1 and 10/2/08
1/12/08 MRI shows swelling

ppearl214

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Re: Achey at 9 weeks post CK
« Reply #4 on: November 26, 2008, 06:49:34 am »
Hi Sher,

I think okiesandy and I have had discussions a long time ago (either here or on the CK boards) about the achy feel, not long after CK... kinda like flu-like symptoms without the fever.  You can try doing a "search" option here from the main forum page... .you may find it.  Besides myself, I know of some others (not many, but some) that also experienced it......  Had also noted it to my CK team and basically, I got a lot of rest.

re: Fatigue... here is the link to the "Brain Tumor and Fatigue" brochure.

http://anausa.org/forum/index.php?topic=1969.0
(Please see Stein78's post - 2nd one down - with stein78 "CLICK ME FOR THE ARTICLE")

I know many here have gained insight.... unfortunately, for many, it's part of the territory.  Provides remedies on how to counteract fatigue.... exercise is key.... helps to activate the endorphines to give us energy. Not sure if you have read it before, but it may be of help.

Hang in there... listen to your body if it hints for rest... and happy Thanksgiving to you and your's.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

pearchica

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Re: Achey at 9 weeks post CK
« Reply #5 on: November 26, 2008, 02:19:26 pm »
Hey Sher: sorry you are having side effects from the CK.  And I am sending positive thoughts your way! November in general always gets me down. (It's cold, dark and when I used to sell fruit, it was always slow).  I have found over the years that light is very important, particularly at this time of year.  Sounds new agey I know but for me lighting candles, have full spectrum light bulbs (when I lived in the NW) was really helpful. Also cheerful music.  I don't want to come across as a 'pie eyed' optimist, especially when you are feeling aches and pains.  I just know for me when I mentally feel better, the aches are more manageable.  I hope things get better for you and that phyl's info post will in particular be helpful.

you are not alone in this- we are all here (and hear) for you.


Take care, Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

MaryBKAriz

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Re: Achey at 9 weeks post CK
« Reply #6 on: December 11, 2008, 11:44:41 am »
Hi Sher,

I think Annie has some great ideas and Phyl is always such a good kind hearted inspiration. Sue and Sandra - great ideas. When you put all of this together it makes such good sense. Nothing too radical, some fun things, too. Dealing with doldrums is probably quite common with us all - I am so glad we have each other. We all know we are not alone in our feelings. Laughing always helps me. I try to stay in touch with the funniest, most loving people I know. I try to enjoy the bright sunshiny days at this time of year.

Sending you a big hug,

Mary
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

Tumbleweed

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Re: Achey at 9 weeks post CK
« Reply #7 on: December 11, 2008, 05:36:23 pm »
Hi, Sher:

Try taking a solid extract of Rhodiola rosea, a natural herb, for fatigue. I take 450 mg once a day and it helps me immensely. Take it early in the day on a mostly empty stomach (immediately before a meal seems to work best for me). If you take it too late in the day, it might keep you awake at night.

Make sure you're eating plenty of food rich in B vitamins, to combat depression. And exercise and get outdoors in the sunlight.

That should help.

Best wishes,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

fbarbera

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Re: Achey at 9 weeks post CK
« Reply #8 on: December 12, 2008, 05:30:00 pm »
Hey There, Yes, it can be pretty slow going for several months after CK.  For me, months 2 through 8 were the worst, but it has been all uphill ever since.  There's a "post-treatment" section of my website below where I recount how I was feeling in the months after CK treatment.  Good news is -- it will pass!  Be well, Francesco

sher

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Re: Achey at 9 weeks post CK
« Reply #9 on: December 13, 2008, 12:32:19 am »
Thank you everyone!

I was doing better until I got a BAD cold and bronchitus, but I will get through it. Everyone around me has had it so I don't know why I thought I wouldn't get it. But boy I did. I about died when I got on the scale at the Doctor's office... I better get going with my Wii soon. Did any of you gain weight after your balance went wacky?
Sher
1.2cm x 0.6 cm extracanicular component (7 mm) 05/08/08
MRI in AUG 08  showed 30 % growth
Having CK 9/30, 10/1 and 10/2/08
1/12/08 MRI shows swelling

ppearl214

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Re: Achey at 9 weeks post CK
« Reply #10 on: December 13, 2008, 07:53:41 am »
Did any of you gain weight after your balance went wacky?
Sher

Initial dose of Decacrap helped with the weight gain.....  dang it!  >:(    Increase appetite is one of it's side affects.  Hoping you are doing some form of exercise, regardless, to help... plus, with the holiday season......  oy.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"