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someone help me to understand

scuttlebug11's picture
Posts: 175
Joined: Jun 2011

hi, i don't post here a lot but i just don't understand why i always feel so bad, i have fnhl stage4 i have been in remission since 2009 i had rcvp in 2005 and rchop in 2008, i read other post of people with the same thing and they don't feel like i do i can't figuer out what i am doing wrong. last month my pet scan showed a hot node in right groin side, i don't see my oncologist untlll nov. his nurse said he beieves its scar tissue from chemo, i did't know chemo left scar tissue. i am always so tired. and i seem to always be sick someone help me to understand what i am doing wrong. denise

palmyrafan's picture
Posts: 397
Joined: Mar 2011

right away. Either your PCP (primary care provider) or an Endocrinologist who will probably order a CBC (complete blood count) to make sure there are no underlying problems going on; i.e. anemia, low thyroid or overactive thyroid, low adrenals, low sodium or potassium, etc.

I have never had chemo but I have heard some peope have bad side effects that don't show up until chemo is over. Same with radiation. I had IMRT in 1996 and the bad side-effects just showed up in January of this year, right on time according to the Radiation Oncologist.

Something else many people don't consider is this. What kind of light bulbs do you have in your home? Sounds crazy I know, but humor me.

The reason I ask is that I have noticed that we had "soft white" light bulbs in our home. Regular and energy efficient (spiral ones). My mood never seemed to lift until I got in an environment where the bulbs projected a "white" light or natural light. So this past weekend, we changed out all the soft white bulbs and now only use the "natural light" or "Reveal" bulbs and I can't tell you what a difference this has made in my moods. I'm not getting the headaches like I used to (used to get them multiple times a day, on a daily basis) and now I barely get them. I am a happier person and am more prone to get up and try to get some things done, even if only to empty the dishwasher and re-load it or to do some laundry.

If you're CBC comes back okay, talk to your doctor about whether or not you could be depressed and if there is anything you can do to help combat that.

I hope you find out what is going on and you get the relief you need.


scuttlebug11's picture
Posts: 175
Joined: Jun 2011

hi thresa thank you for your reply, cbc normal my lymphocytes and platelets are still low i am on cymbalta i don't feel depressed except for the fact that i am so tired, i don't even make it to church anymore, i take thyroid medicine my primary care doctor put on my report for my caregiver services that my health is deterroting i refuse to except this i need help to pull myself out of this how can i build back up my health and immune system which is comprimised there has to be somthing i can do. denise

AnneBehymer's picture
Posts: 739
Joined: Jul 2011

I am still in treatment for my stage 4 overian cancer and I have alot of days when I just don't have the energy to do anything it is the chemo. I have been told this is going to go on for around six months after the chemo has stopped. I would go see you PCP anyway just to make sure it is nothing else. some times it is hard to tell what is chemo and what is something wrong don't worry about talking with your doctor and to a chemo nurse about what is going on they will not feel like you are bugging them. They would rather answer a million question and it be nothing than you not asking and it being something really bad. I would end up in the ER after every chemo for a while because I did not know if what I was going through was chemo or if it was something bad. I would always say I am sorry and they would say it is no big thing we would rather have you come in and it be nothing than you sitting at home with something really bad going untreated.


catwink22's picture
Posts: 276
Joined: Sep 2009

Hi Denise,
Have you thought about getting another opinion? I'm thinking you have probably been going to your onc for years and are comfortable and trust him, but the "hot node" on the PET scan is bothering me. I'm no doctor, but when something shows on a PET scan it means there is activity of some kind (i.e. your brain and kidneys light up because they are active even though there is no cancer). I don't believe scar tissue would show on a PET. I don't mean to alarm you, but why take chances? A second opinion wouldn't hurt and if nothing else put your mind at ease. Take care of yourself and I hope you are feeling better soon.

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