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Ferritin Level

Chelsea71
Posts: 1170
Joined: Sep 2012

You guys aren't going to believe this but Steve is experiencing an unusual problem.  I have mentioned in my recent posts that he has been experiencing extreme fatigue since taking a chemo break from May 14 - June 27.  I noticed it when we were in Vegas.  He seemed to sleep a lot.  It got progressively worse to the point of sleeping almost constantly.  

Example of a typical day

Go to bed t 10pm and sleep all night.

Up at 9am for breakfast.  Back to bed and sleep till noon.

Lunch and watch tv until 2 pm then asleep until 5 pm.

On a good day he may be able to stay up until 10 but may also require an evening nap.

 

Social situations exhaust him.  When we spend time at my parents house, he will be asleep on the couch for 85% of the visit.  Despite kids running around and making noise.  He will wander away from the dinner table in the middle of a meal to sleep!

 

Keep in mind this problem began when he was not taking chemo.  Since starting Folfox, the fatigue has been no better and no worse. He has liver tumors which will cause fatigue, but this seems like something more.  When he was hospitalized in Feb for the spontaneous hematoma, his onc prescribed iron - ferrous gluconate 300 mg T.I.D.  His ferritin level has never been tested.  Two weeks ago I checked off ferritin and B12 on his chemo requisition.  (yes, I am a bit of a rebel).  At chemo I inquired about these levels and was shocked to hear that the ferritin which should be in the high 200 was actually 1300.  B12 was 1200 (should be no higher than 600).  He stopped taking the iron.  I could tell by the nurses reactions that these levels were exceptionally high.  I googled iron overload and the most common symptom his extreme fatigue.  It is not a simple case of stopping the supplement and the level returning to normal.  Once the iron is there it has to be removed through blood letting or chelating medications.  The PDN says we will monitor the level for a month.  Steve doesn't have a month to spare on just waiting to see what happens.  We want to do things.  I want rid of this iron immediately.  We have an onc app on Tuesday and I plan to push for blood transfusions.  I am worried she will insist on waiting. 

 

Has anyone had this problem?  Any advice?  Do you think it's the iron causing the fatigue or the liver problems?  Do other people with extensive liver mets experience fatigue to this degree?

 

Thanks guys

Chelsea

renw's picture
renw
Posts: 282
Joined: Jan 2013

Wow wow wow. I don't believe that any sane doctor would prescribe iron to a cancer patient. Low iron is a good thing.

Just google "iron cancer growth". You'll find study after study that link iron to enhanced tumour growth. In one experiment, iron chelated mice had 3 times slower cancer growth etc. etc.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

dear chelsea,

sorry to hear about steve problems, I used to donate plasma before cancer, they have away of removing iron and blood cells and returning the plasma, that way you dont need a transfusion to get rid of iron. unless the transfusion is for another reason. i think transfusions should be avoided, personal opinion few support.

I hope this plasma technique is available to steve.

last thursday dendtritic vaccine shot was cancelled due to suspected xeloda wbc issues, the naturopath recommended

this iron supplement https://www.abacohealth.com/index.php/prodid/SALU006

I have heard the warnings about iron and cancer and found this article helpful http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3079335/

As I exercise, do saunas and full body hyerthermia and ipt. all hgh sweat activities I am focused on maintaining essential minerals and vitamins, clearly i have recently failed given my blood counts. so i will keep on trying.

I will ask the doctors about iron and cancer, i think it comes back to the angiogeic switch, that I hope I have turned off. without iron, we run low oxygen, which is hypoxic and boost hif1, so we are dammed if we do and dammed if we dont. I will be watching my bloods and tumours markers like a hawk.

so our medicine is not only personalised, but it depends on the stage of the illness.

I ordered some raw organic liver today, its supposed to help boost blood counts. looking forward to it.

sorry to hear about steve problems, I used to donate plasma before cancer, they have away of removing iron and blood cells and returning the plasma, that way you dont need a transfusion to get rid of iron. unless the transfusion is for another reason.

goodluck,

hugs,

Pete

ps thanks ren for the warning, another piece of info to juggle

Bee bee
Posts: 27
Joined: Jul 2013

I know every situation is different but what you described matched my dad's sleep habits in the last 2-3 months before he passed away. He had prostate cancer with significant metastases to the liver. He was extremely fatigued and we were intially worried too but our hospice nurse said this was not unusual. He wasn't on any supplements or any treatment at that time, mostly just pain and anti-nausea meds. Please don't take this to mean that's the case for Steve but I did want to respond to your question on whether this was possibly from liver metastases.

i'm very sorry you're going through this...

Chelsea71
Posts: 1170
Joined: Sep 2012

I actually forgot about this thread.  Thanks for the responses guys.  They did an iron study due to the ferritin level being so elevated.  It showed that there is no elevation.  No iron overload.  Apparently when there is a problem within the body (such as liver failure) the ferritin level can jump sky high.  I realize now that this fatigue has been due to the liver metastasis.  I guess I preferred to think it could be caused by something less serious.  Something that could be reversed.  All his symptoms are due to liver failure.  

 

Thanks again 

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