NavyDave Posted January 12, 2006 Share Posted January 12, 2006 Hi guys, First of all I just want to say how great I feel being a part of this site and how immensely grateful I am that such a beautiful community has arisen out of such an indescribably trying circumstance. That being said it's time for me to ask a few questions =) 1. My mom is currently taking 240mg of oxycontin and 20mg of methadone every 8 hours as well as supplementing actiq (morphine based) lollipops and 15 mg oxycontin breakthrough pills. As little as 3-4 weeks ago it was only 80mg of oxy every 8. This dose was not allowing her to get through the night without waking up in excruciating pain which has her sobbing (my mom is NOT a crier), and breathing as if she is in labor. All attempts to manage the pain have been futile. They keep upping her dosages and she keeps having to deal with the exact same types of pain at the exact same times... it just doesnt make any sense... wondering if anyone has any idea what to do from their experience. ie: better pain medications. 2. Not sure if anyone else has heard anything about this, but from alot of the information we have read, in order to starve the cancer cells it is beneficial to try to minimize carbs/sugars. If anyone else has heard of or subscribes to this belief... do u have any diet recommendations about a non sugar/carb supplement in order to keep her calorie intake up? Or any other diet suggestions? P.S. My mom wanted me to ask if anyone else stage IV experiences "horrific stabbing pains" in the shoulder blades? Quote Link to comment Share on other sites More sharing options...
antoinettev3 Posted January 12, 2006 Share Posted January 12, 2006 I'm SO sorry that your mom is in this much pain and is not getting any relief. Does she see a pain management dr. or is her oncologist handling the medication? I'm assuming she's seeing a PM doc since she's on methadone. This is not a drug most docs are familiar or comfortable enough with to handle properly. Since she's using the Actiq lollipops has her physician considered using the Duragesic patch which is the same medication but in long acting form? When nothing else was helping my pain for more then an hour or two at a time they put me on the patch. It worked very well unfortunately because I am hyper-sensitive to narcotics I couldn't stay on it. While I'm not a stage iv patient I did experience very sharp pains in my left shoulder blade (that's the side my mesothelioma is on). I tried methadone, dialudid, duragesic, vicodin (the only thing I could barely tolerate) and a few other things I can't even remember. Radiation is what finally took care of the pain for me and I thank God everyday for it. As far as carbs/sugar and cancer; there is no conclusive evidence that sugar consumption makes any difference whatsoever. I have spoken to my own oncologist and my surgeon and neither felt there was any need to eliminate sugar from my diet. I'm not a real big sugar eater so its not a big concern for me but I can see if one needs to rely on Boost or Ensure for their meals it could be. One solution would be to make ones own shakes using a sugar subsitute or fruit to sweeten the drink. There is a wonderful low carb sugar that is natural called Whey-Low. Its made with fructose, sucrose and lactose in a combination which does not cause the sugar spikes that regular sugar does or have the nasty aftertaste that artificial sweeteners do. The owner of the company that makes it created it for his wife who is a diabetic. You can get more info at: http://wheylow.com I pray that your mom will get relief ASAP and she will be able to sleep through the night. I can relate to how awful that is and I woke my husband up many nights sobbing from pain (I'm not a crier either). Please keep us posted on her progress when you can. God Bless. Antoinette Quote Link to comment Share on other sites More sharing options...
Snowflake Posted January 12, 2006 Share Posted January 12, 2006 One thing to consider is that if your mother is weak, taking sugar/carbs completely out of her diet may totally compromise her health. Discuss ANY diet change, especially a drastic one, with her doctor. Search this site for Advil liqui-gels. I think I read something about the Advil liqui-gels helping where the opiates did not. Also, check that with the doctor for contraindications. I hope she's feeling better soon. Becky Quote Link to comment Share on other sites More sharing options...
karenl Posted January 12, 2006 Share Posted January 12, 2006 Hi Dave If you read through the Alternative/Complementary forum, I'm sure you will find some discussion on this. You might also try the Search icon at the top of the page, and type in something like 'sugar-free'. I know this topic has come up many times before. Mum tried to adopt a relatively low sugar diet during her illness, and she did very well for 18 months after being diagnosed at stage IV. I wish you and your Mom the best..... Karen Quote Link to comment Share on other sites More sharing options...
ginnie Posted January 12, 2006 Share Posted January 12, 2006 I too have shoulder pain, not severe but constant. You might want to check pancoast syndrome. It causes shoulder pain that radiates to the shoulder blade due to lesions on nerves - can cause severe pain. Quote Link to comment Share on other sites More sharing options...
joanie55 Posted January 12, 2006 Share Posted January 12, 2006 Hi Dave, So sorry to hear the pain your mom is in. Is she being seen in one of the larger NY hospitals? They all have "special pain management" doctors there, that hopefully should be able to help her. As far as the shoulder pain, I've been suffering with lots of shoulder pain lately, including feet and finger pain. The doctors finally concluded that it is neuropathy, caused by the chemo. They just gave me a prescription for it. I'll know in about 2 weeks if it works. I believe its caused by nerve damage. As far as the sugar/no sugar controversy, my doctors and a cancer nutritionist I saw felt there was no conclusive evidence regarding eliminating sugar. I think whatever makes the patient feel better is the way to go. (my opinion) Wishing you both the very best. Joan Quote Link to comment Share on other sites More sharing options...
dchurchi Posted January 12, 2006 Share Posted January 12, 2006 Hi Dave, I am unable to comment on the shoulder pain, however, I will tell you that about the only thing my husband will eat on a regular basis are foods loaded with sugar. He currently lives on doughnuts!!! Candy bars any type of surgar filled junk food. On a nutruitional basis I would not exactly recommend this diet, however, he is eating an putting a little weight on. He also at this time had no evidence of cancer. Hope that helps with your sugar question. I pray your mom's pain can be managed. Quote Link to comment Share on other sites More sharing options...
dchurchi Posted January 12, 2006 Share Posted January 12, 2006 Hi Dave, I am unable to comment on the shoulder pain, however, I will tell you that about the only thing my husband will eat on a regular basis are foods loaded with sugar. He currently lives on doughnuts!!! Candy bars any type of surgar filled junk food. On a nutruitional basis I would not exactly recommend this diet, however, he is eating an putting a little weight on. He also at this time had no evidence of cancer. Hope that helps with your sugar question. I pray your mom's pain can be managed. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted January 12, 2006 Share Posted January 12, 2006 I'm wondering if the pain is coming from a tumor and perhaps radiation is in order. Has your mom been scanned lately? On diet, my wife's onc said the important thing was for her to get enough calories and liquids so she does not get dehydrated or lose a lot of weight. Either would compromise her body's ability to fight the disease. Don Quote Link to comment Share on other sites More sharing options...
icbn Posted January 12, 2006 Share Posted January 12, 2006 I'm sorry your Mom is having so much pain. Some [people, myself included, do not get much pain relief from opiates or narcotics. Aspirin, Tylenol and Ibuprofin actually do more to give me pain relief than does morphine. As far as carbs and sugars, this is from our own Ask the Experts: "As to the statement that sugar feed cancer cells - of course they do. But they also feed normal cells too. You can't really change conditions enough to deprive cancer cells of these things without depriving your other cells as well. This will probably bring a storm of protest but there really isn't any good evidence that the composition of the sugars in your diet makes any difference. I know there are lots of people who make claims to the contrary and talk a lot about the different kinds of sugars and their chemical composition. But basically the body just converts any sugar into whatever kind of sugar it needs at that particular moment. If there is no straight sugar in your diet, then the body just extracts the sugar from the foods you do eat and converts into the different types. Eat a healthy, well-balanced diet and you should be fine. " Quote Link to comment Share on other sites More sharing options...
Miami Janet Posted January 13, 2006 Share Posted January 13, 2006 Hi Dave, So sorry your Mom is suffering so much pain. My Mom also complained of pain around her left shoulder blade but the doctor could never tell us what it was. It bothered her but I dont think it was excruciating. As for the sugar, I think its more important to just get her to take in as many calories as possible to keep her weight up. Hope things get better for Mom...Janet Quote Link to comment Share on other sites More sharing options...
TAnn Posted January 13, 2006 Share Posted January 13, 2006 Dave, First of all I don't know how your mom can tolerate all the narcotic pain meds she's been taking. I'm one that can not tolerate the narcotic meds and am using the Advil liqui-gels also. Plain Advil works too, just takes longer to kick in. I get treated at MD Anderson and they have a pain management department. They told me that if I can no longer take the pain there are several other options like a spinal block and injections. Talk to her doc, she couldn't possibly be feeling well with all the pain meds she is on. TAnn Quote Link to comment Share on other sites More sharing options...
hollyanne Posted January 16, 2006 Share Posted January 16, 2006 Hello - Unfortunately, my mom is one who had tremendous pain from bones meds, so I have a lot of experience. The first thing that really started to help with pain was the Duragesic patch which works for 72 hours -- and can be easily increased or decreased in dosage -- my mom was around 200 mg...and she too used the Actiq -- if the Actiq helps breakthrough pain, the Duragesic should be very helpful. As fas as shoulder blade pain goes, it may be another tumor -- and may need radiation. My mom had radiation on her spine/neck and hips over the last months..... Towards the end of my mom's life, we had her on a morphine pump which was fantastic as it gave immediate relief (even quicker than the suckers.) -- I wish she had been on it earlier. Lastly, she responded very well to steroids -- as it appears that inflammation from the tumors were putting so much additional pressure on nerves. Please feel free to PM me, as we tried A LOT of options. Please rest assured, that the pain should be controllable. I know that watching a loved one in pain can be the most hideous part of this disease. Holly Quote Link to comment Share on other sites More sharing options...
NavyDave Posted January 16, 2006 Author Share Posted January 16, 2006 Thanks for all the replies, Don't even know where to begin. All of you who have mentioned the sugar thing... I tend to believe that it isnt really a factor... the problem I have is that she has been so long convinced that it is something she has to minimize it has become a sort of mission that when shes on it she feels like shes fighting the cancer and it does empower her (she gets so much of it in her fruits and veggies anyway but seems to think its a different kind that wont be used by the cancer in the same way). I feel so reluctant to burst her bubble when she clings to things like this because she is so set in her ways and derives so much of her will to fight from these deeply rooted ideas (stubborn germans =P) I have just begun to be successful in getting her to consider possible radiation treatments to reduce the pain. I'd like to find more information on these types of radiation in order to further convince her. She was on the duragesic patch early on but didnt have a great reaction to them (nausea) but I think she might be a little more tolerant since her body has since learned to tolerate so many other drugs... some of which have similar active chemicals to the duragesic. I'm trying to get her to start on it just to see if it will work better than what she's on. My father is not handling the situation well at all. I'm adding this because I just spoke to him and he has me so stressed out right now. He's so negative and is looking for things to go wrong constantly. He keeps questioning the doctor asking for time frames, asking the Hospice people for timeframes. Its like hes searching so hard for signs that the worst is near. My mom was up last night at 430 am with a horrible cough that sounded like she had fluid in her lungs and was choking on heavy amounts of phlegm. It had her very distressed and passed after about a half hour... this was her first such episode. My Father is trying to claim that this is a sign that the end is near. From what I have read my mom is not close to the end... she still has an appetite, is completely coherent... has a serious loss of energy, but can still walk around, wash some dishes, breathe without oxygen... Im just so tired of him being soooo negative and searching for some sign of horrible things to come. What can I do? Ive told him all this but he defends himself with "being realistic and prepared" yet he wont read up or research thing son his own... just asks the 2 medical professionals he happens to come in contact with (hospice nurse and the family doctor) Im not entirely convinced he isnt twisting what they say to fit his gloomy visions of the future either. He seems to think that it is likely that she will die suddenly... he has no proof that this is likely. Is there any information I can show him regarding the progression or symptoms of the disease to refute his irrational claims so he can stop making my mom paranoid? Please forgive the rambling. And thank you all for your informative responses. ~Dave Quote Link to comment Share on other sites More sharing options...
hollyanne Posted January 16, 2006 Share Posted January 16, 2006 Dave - Everyone handles the stress differently. Your dad may really be trying to prepare himself. Yet, you do want to encourage him to keep the negativity away from your mom...she needs every bit of positive strength she can get. I believe that everyone's disease progresses differently. For example, my mom never had one lung symptom (no breathing problems, no cough, etc.) yet she had a lot of pain from the bone mets.....I believe that one small tumor in her neck was what eventually took her life as it compressed the spinal cord. You just don't know. There were many times that I thought "this is the start of the end" yet it wasn't.... Radiation is amazing as symptom relief. My mom's hip, neck and spinal pain were excruciating...all three areas were radiated (I believe 10-12 x per area.) In some cases the relief was immediate after the 10th session, in some it took a while -- but radiation will shrink the tumor and relieve pressure on nerves. I am sorry you are going through this. Holly Quote Link to comment Share on other sites More sharing options...
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