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Papillon

Papillon

Total Messages 3

Subject:chondrosarcoma + CFS

Diagnosed with chondrosarcoma right femur epicondyl. Surgery 27 july 2007 removing tumor, medial ligament cut and repaired, allograft repair. I am currently recovering and doing quite well, walking short distances etc, bending as far as screws alow (one is 'rubbing' the ligament).

Inflamed tendons of achilles and patella. Achilles tendon is toughest, patella tendon seems to get better. Have more pathologies like Fibromyalgia, Reynauds fenomenon and Back trouble (degenerated discs, herniated discs, arthrosis and osteofytes) which make recovery tough.

Yet fatigue is very serious even though I took and take time to recover from surgery. I know CFS and surgery do not go well together... but fatigue getting worse is worrying me.

Can you give advice? Food/ food-supplements...?

I take L-Carnitine 500mg and Vit. C 1000mg once a day and Diclofenac 75mg retard twice a day. For sleeping-aid 1 gram Rivotril (Clonazepanum). Not drinking alcohol, nor smoking.

Suppose chemo or radiation will be adviced, for now I'd say 'no' to these options as my immunesystem is too low, am I right? Untill now it hasn't been discussed, but since extra pain coming up and new CT etc I want to face options and be prepared.

Tired Papillon.


Posted: 06 Jan 2008 09:58 AM
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Lhearn

Lhearn

Total Messages 104

Subject:chondrosarcoma + CFS

Fatigue is the primary side effect for most cancer therapies, and it sounds like yours is complicated by additional fatiguing conditions. Lifestyle factors, including nutrition, physical activity and sleeping patterns, are all very important in fighting fatigue; however, it is unlikely that these efforts will eliminate this troublesome side effect entirely. We would encourage you to consume a diet rich in fruits, vegetables and other plant foods in order to meet all of your nutrient needs and maximize your energy levels. Physical Activity can also be very helpful in increasing your feeling of energy, range of motion, joint motility and overall sense of well-being. If you are not already exercising, talk with your healthcare team about any limitations you may have. Continue your walking and/or water exercise, if this is more comfortable on your joints. Increase duration and/or frequency of these sessions until you are achieving a daily total of at least 30 minutes of exercise.

L-Carnitine has been shown effective in improving fatigue in multiple conditions, including cancer and autoimmune diseases (most studies have been of short duration with few participants, but results are promising nonetheless). Few, if any, safety concerns have been raised with short-term L-Carnitine supplementation, but longer-term studies are needed to confirm safety and efficacy. You should be aware that both L-Carnitine and vitamin C have anti-oxidant activity, classifying them among other dietary supplements that may interact with standard cancer therapies such as chemotherapy and radiation.

Sleep patterns are also integral to fatigue management. In general, avoid long naps during the daytime, allowing for longer and deeper rest overnight. You can discuss your sleep habits in more detail with your healthcare team. Overall, your description of worsening fatigue may need to be evaluated more thoroughly by your physician. Melatonin is a naturally occurring substance that is produced in the body, found in some foods, and can be purchased as an over-the-counter dietary supplement. Melatonin is commonly used to relieve jet lag but is also a helpful sleep aid in many individuals. Small amounts of melatonin are found in corn, oats and rice. Alternatively, 1-3 mg of Melatonin in supplement form can be taken just before bed. Melatonin is an anti-oxidant, so concerns similar to those outlined for L-Carnitine and vitamin C should be considered.

In reference to the inflammation you mentioned, omega-3 fatty acids have anti-inflammatory properties. Choose fatty fish (e.g., salmon, herring, sardines) as well as plant foods high in omega-3 fats (e.g., flax seeds, walnuts) regularly.

Your final question about whether it is appropriate to decline chemo and radiation on the basis of a suppressed immune system is one that only you, in conjunction with your oncologist, can answer. You must consider whether deferring these treatments for a short time will be sufficient to allow recovery of your immune system without presenting a greater threat to the status of your cancer and overall health.

Dena Norton


Posted: 08 Jan 2008 02:38 PM
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Papillon

Papillon

Total Messages 3

Subject:chondrosarcoma + CFS

Thank you Dena!

Thank you for answering so thourough, I really appreciate your effort!

Untill now I have no 'team' that helps out so I have to go to seperate drs and try and figure it all out myself and find good comobinations so your response helps a great deal in putting two and two together!

I read that there can be a concern about anti-oxidants where untill now I heard that we should increase our anti-oxidants! Can you tell me what the concern is? I'd like to get a good balanced food-intake.

The L-Carnitine is something I have taken for many many years and wondering if maybe this could have a negative side-effect. Haven't found anything so far so I'd really appreciate if you share your knowledge about L-Carnitine so I can make better decissions.

Is Melatonine something that can be combined with Clonazepam?

Papillon


Posted: 09 Jan 2008 01:49 AM
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skshort

skshort

Total Messages 36

Subject:chondrosarcoma + CFS

I'm glad the response was helpful to you and I will try to answer your follow up questions as best I can.

The two primary concerns regarding anti-oxidants, particularly in higher doses provided by some dietary supplements, are these:

(1) A certain level of oxidation is necessary for normal body function, so the recent craze over eliminating oxidative damage entirely may lead to misconceptions in this area. Here at Anderson, we certainly advocate a diet rich in antioxidant nutrients (aiming for at least seven servings of vegetables and fruits daily is a fantastic way to achieve this), but we await more conclusive data regarding supplementation with doses of antioxidants (e.g., vitamins A,C,E, melatonin, alpha-lipoic acid, etc.) before recommending these during traditional cancer treatments (namely chemotherapy and rradiation).

(2) In addition to the above, individuals receiving cancer treatment using chemotherapy and/or radiation should also be aware of the potential for high-dose antioxidants to interfere with these therapies. This potential is primarily a theroretical one, and more large-scale clinical trials are needed to confirm whether it has a real effefct in humans receiving therapy, but it remains a possibility nonetheless. Many chemotherapy drugs work by searching for oxidatively damaged cells (cancer as well as other cells) in the body and destroying them. In theory, if one is consuming large amounts of anti-oxidants that prevent and repair oxidative damage, the chemo may have less than maximum opportunity to find and kill all the cells it otherwise could. Radiation therapy also involves oxidative damage, and similar concerns related to interactions exist for this form of treatment.

In response to your request for more information about L-Carnitine, it is actually produced in the body but is used in supplemental form to help combat fatigue, chest pain, peripheral neuropathy and other conditions. It has a fairly clean track-record as far as safety/side effects goes, but you would want to discuss with a physician or pharmacist about possible interactions with existing medical conditions or prescription medications. You may also appreciate the extensive list of "fact sheets" on individual dietary supplements, including carnitine, posted on the National Institutes of Health's Office of Dietary Supplements web page:

http://dietary-supplements.info.nih.gov/Health_Information/Information_About_Individual_Dietary_Supplements.aspx

Finally, I will have to defer to a doctor or pharmacist for a definitive answer regarding combination of Melatonin and Clonazepam as that is outside my scope of practice.

Dena Norton


Posted: 11 Jan 2008 03:02 PM
Originally Posted: 11 Jan 2008 03:00 PM
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