Cachexia - Anyone heard of this??

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jcavanaugh
jcavanaugh Member Posts: 100
edited March 2014 in Colorectal Cancer #1
Hello:

Long story short, my dad has stage IV cancer since May 2002. Multiple reucurrences. Just got over pnemonia in August/September. Back on treatment. Did not eat much in August/September. According to scale, he weighs 185 which is fine. He has a bloated stomach which we cannot seem to get rid of. He is on new medication for that. I think he has lost more weight. His arms and legs are so skinny now. He pointed this out to the doctor last week and the doctor did not say anything. I thought that this loss of muscle and fat was due to a month of not really eating catching up to him. So, I went online to research weight loss and muslce loss and found this term - cachexia. I am very scared. I think my dad has this and if so, this is the end. I do not know what to do. From what I have read, there is not much that can be done once someone has this. I am puzzled why the doctor has not brought this up. It is obvious that my dad has lost some weight in his arms and legs - in my opinion, very skinny. Please help!!! Any news of encouragement would help me at this point.

Jennifer

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  • msccolon
    msccolon Member Posts: 1,917 Member
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    you'll hear it more often referred to as wasting
    And yes, unfortunately, it is common in cancer patients and some believe it's a symptom of the final stages of cancer. BUT!!!! There is always a but! With your description of his other symptoms, mainly extension of his abdomen, I would guess the wasting is due to the fact that the fluid building in his abdomen is making him unable to eat due to no place for his stomach to expand. I had a recurrence in 2006 of a tumor on my ovary that was producing huge amounts of ascites (the clear fluid that tumors "weep") which made me look 9 months pregnant. I had to have the fluid drawn off weekly in order to be able to eat and pass my bowels. They removed 4 liters of fluid every week! I then could eat and noticed significant decreased ability as the week went on. By the time I had the surgery to remove everything, I had lost a significant amount of weight. I couldn't really tell how much I had been losing since my large abdomen made me feel so big! The point is that I am still around 2 years later and have more than gained all the lost weight back! Why isn't your onc draining his fluid? What medication is supposed to be getting rid of the ascites? Didn't know you could get rid of it through medication. I would definitely ask about having it drained. It's a simple in office procedure which kind of freaks you out the first time, but the relief is so great you get to look forward to it. Of course, you have to address what is producing the ascites or it just continues to accumulate. And by the way, I actually weighed myself after the fluid draw and found that I lost 8 lbs with the 4 liters of fluid.
    mary
  • Wissurvivor
    Wissurvivor Member Posts: 5
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    cachexia and acites
    I had this last winter. Dropped weight from 210 to 149 in five months. Fluid stressed my abdomen and required draining on three occasions about 6 weeks intervals, took from 6 to 8 liters each time. I take two diruetics each morning and nightto keep fluid in control now for seven months. Developed navel hernia and had surgery to repair in the sixth month after all this fluid began in October 2007. Have been fighting stage IV colorectal cancer for 33 months now. I took Megase to increase appetite and now weigh 205 again, working out at the gym six days each week. Your dad can get better, do not lose your hope. Best of luck to your family.
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
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    Hang in there!
    Hey Jennifer,

    Don't panic... and certainly don't lose hope! I'm surprised his doctor isn't looking into what is causing the build up of fluid and having that fluid drained. You say he's on meds for this... the only meds I am aware of are diuretics but it sounds like his fluid needs something more aggressive.

    As for the losing weight and "wasting away"... I wouldn't worry about that at this point. There are oodles of us who have lost lots of weight and (unfortunately) gained it all ack.

    When they didn't know what was wrong with me, or why I was having a pain in my left side for 6 months... I lost 75 pounds. At the time, I was ecstatic!! No diet had ever produced such great results, and I didn't feel I was starving myself. Of course, this was also a clue that something was wrong... that I had the pain in my side and I lost so much weight over the summer. Then they found the cancer. I look now at pictures of myself in the hospital... yikes!! Losing weight causes wrinkles!! ;) Anywho, I think you would probably have thought I was wasting away if you saw me in the hospital after my surgery.

    But after I recovered from the surgery, the weight came back on. I thought for SURE I would lose that weight again once I started chemo. Wrong! So, once they get him fixed up, and he's up to eating again, it will come back :)

    Hugggggs,

    Cheryl
  • jcavanaugh
    jcavanaugh Member Posts: 100
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    cachexia and acites
    I had this last winter. Dropped weight from 210 to 149 in five months. Fluid stressed my abdomen and required draining on three occasions about 6 weeks intervals, took from 6 to 8 liters each time. I take two diruetics each morning and nightto keep fluid in control now for seven months. Developed navel hernia and had surgery to repair in the sixth month after all this fluid began in October 2007. Have been fighting stage IV colorectal cancer for 33 months now. I took Megase to increase appetite and now weigh 205 again, working out at the gym six days each week. Your dad can get better, do not lose your hope. Best of luck to your family.

    Thanks for all the support
    I think that he can get better too but I a fear that my mom has given up on him. She thinks that nothing more can be done. The fluid pills that he is taking are working. Since he started taking them last monday, his stomach has shrunk a lot and he lost 9-10 pounds of fluid. He ate well yesterday - three regular meals. He often says that he feels full because of the swelling. The cause is too much cancer in the liver. He is supposed to be on xeolda, avastin, and oxalplatin but has only been on xeolda and avastin for the last month due to an allergic reaction when he last received oxalplatin. He has had oxlplatin before and did not have a problem. He did have an allergic reaction the first time that he received erbitrux but the doctor tried it again the following week by giving him benadryll (sp) and giving it to him in smaller doses. My parents have an appointment this Friday with the oncologist to discuss his treatment - ie drugs. I hope that the doctor has not given up. I also told my dad to ask him about a nutrionist referral and physical therapist referral. I am the only one still fighting strong. My parents seem to be beaten down (my mom more than my dad). Up until he got pnemonia and was off treatment for 6 weeks, he was riding his bike regularly (5 miles each time) and eating normally. We just need to build him up so that he can keep fighting. I really appreciate your posts. I needed to hear this today!!! Thanks so much.
  • msccolon
    msccolon Member Posts: 1,917 Member
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    Thanks for all the support
    I think that he can get better too but I a fear that my mom has given up on him. She thinks that nothing more can be done. The fluid pills that he is taking are working. Since he started taking them last monday, his stomach has shrunk a lot and he lost 9-10 pounds of fluid. He ate well yesterday - three regular meals. He often says that he feels full because of the swelling. The cause is too much cancer in the liver. He is supposed to be on xeolda, avastin, and oxalplatin but has only been on xeolda and avastin for the last month due to an allergic reaction when he last received oxalplatin. He has had oxlplatin before and did not have a problem. He did have an allergic reaction the first time that he received erbitrux but the doctor tried it again the following week by giving him benadryll (sp) and giving it to him in smaller doses. My parents have an appointment this Friday with the oncologist to discuss his treatment - ie drugs. I hope that the doctor has not given up. I also told my dad to ask him about a nutrionist referral and physical therapist referral. I am the only one still fighting strong. My parents seem to be beaten down (my mom more than my dad). Up until he got pnemonia and was off treatment for 6 weeks, he was riding his bike regularly (5 miles each time) and eating normally. We just need to build him up so that he can keep fighting. I really appreciate your posts. I needed to hear this today!!! Thanks so much.

    cancer in liver and ascites
    yes, that's fairly common. I'm glad to hear the fluid pills are working for him and you are SO right; keep fighting to get him to keep fighting. They can't give up now! When he gets the fluid under control he can start getting the nutrition he needs and can get his strength back. Has he tried nutritional shakes (Boost, Ensure, Store Brand equivalents)? They are 350 calories in 6 oz and work great! That's what I did when I got home from the hospital and was losing 2 lbs a day. Got that additional weight loss under control until the healing slowed down and i was able to keep up with the calorie burn. Of course, I like Cheryl, managed to put LOTS of weight back on once everything settled down ;). Are you considering going with your parents to the appointment on Friday? Maybe somebody needs to go that is still fighting. If the onc thinks they are DONE, he might not be too aggressive. Of course, it ultimately is up to your father as to what he can tolerate, but if you think he is just in a temporary funk, maybe he just needs to hear some good news.
    mary
  • Wissurvivor
    Wissurvivor Member Posts: 5
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    Thanks for all the support
    I think that he can get better too but I a fear that my mom has given up on him. She thinks that nothing more can be done. The fluid pills that he is taking are working. Since he started taking them last monday, his stomach has shrunk a lot and he lost 9-10 pounds of fluid. He ate well yesterday - three regular meals. He often says that he feels full because of the swelling. The cause is too much cancer in the liver. He is supposed to be on xeolda, avastin, and oxalplatin but has only been on xeolda and avastin for the last month due to an allergic reaction when he last received oxalplatin. He has had oxlplatin before and did not have a problem. He did have an allergic reaction the first time that he received erbitrux but the doctor tried it again the following week by giving him benadryll (sp) and giving it to him in smaller doses. My parents have an appointment this Friday with the oncologist to discuss his treatment - ie drugs. I hope that the doctor has not given up. I also told my dad to ask him about a nutrionist referral and physical therapist referral. I am the only one still fighting strong. My parents seem to be beaten down (my mom more than my dad). Up until he got pnemonia and was off treatment for 6 weeks, he was riding his bike regularly (5 miles each time) and eating normally. We just need to build him up so that he can keep fighting. I really appreciate your posts. I needed to hear this today!!! Thanks so much.

    eating enough
    I used the shakes and boost drinks for weight gain, also rich hot cocoa and freqent milkshakes. Chocolate flavors and sweet liquids seemed easiest to do and add calories. As I gained weight, we shifted to a much better diet of vegetables and salads, with many fruits. I still drink a little cocoa but a steady dose of sugar is only okay in real need to get some weight and strength back.

    I am so sorry to hear that folks are not positive, it is hard to be that way but essential. I chose milestones, like a big trip, visits to old friends, the births of two grandchildren and so on, just to focus on getting to a future at least a year away.

    I was told only two months to live, and that was 33 months ago. My nickname at the hospital is "miracle man" but I never accepted the bad news and always planned to fight and live. My goal now includes setting the world record for survival time, I am 60 years old going on 100...

    Keep fighting and have hope. Go along to see the doctor and consider if you should seek another who is still committed to trying to help your father survive.

    Good luck
  • msccolon
    msccolon Member Posts: 1,917 Member
    Options

    eating enough
    I used the shakes and boost drinks for weight gain, also rich hot cocoa and freqent milkshakes. Chocolate flavors and sweet liquids seemed easiest to do and add calories. As I gained weight, we shifted to a much better diet of vegetables and salads, with many fruits. I still drink a little cocoa but a steady dose of sugar is only okay in real need to get some weight and strength back.

    I am so sorry to hear that folks are not positive, it is hard to be that way but essential. I chose milestones, like a big trip, visits to old friends, the births of two grandchildren and so on, just to focus on getting to a future at least a year away.

    I was told only two months to live, and that was 33 months ago. My nickname at the hospital is "miracle man" but I never accepted the bad news and always planned to fight and live. My goal now includes setting the world record for survival time, I am 60 years old going on 100...

    Keep fighting and have hope. Go along to see the doctor and consider if you should seek another who is still committed to trying to help your father survive.

    Good luck

    what do they know!
    only two months to live, ppphhhhhh! You are a perfect example of why i say don't you DARE try to tell me how much time I have! God knows how much time and that's good enough for me! You go! I don't know if I want to be around until 100, but I sure would like to see 50, then 60, then 70! I am 48 currently!
    mary