CancerCompass message board discussion started by yosh003 on 1/30/2008 http://www.cancercompass.com/message-board/message/all,20463,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi,I was wondering if anyone can help. My husband had his auto stem cell transplant on 1/10. His hospital course was pretty unremarkable and he came home early, on day 10 post transplant. The problem is he continues to lose lots of weight. He has lost about 30 pounds in 2 and 1/2 weeks. He is eating, but he looks skinnier to me from night to morning and this is confirmed by the scale. Docs don't have much to say, I am worried about the myeloma. Any suggestions/ideas about what is wrong or what to do would be greatly appreciated.Carolynn yosh003 Wed, 30 Jan 2008 00:00:00 GMT From what I know about chemo it makes you loose your taste therefore your appetite.  At one time my father has something called thrush.  White milky stuff on your tonque.  this good also be the problem with his immunity so low.  Find his favorite sweets and milkshakes and keep trying.  Talk to the doctor about appetite increasing drugs and to check the tongue for thrush. my dad Wed, 30 Jan 2008 00:00:00 GMT  It sounds more like lack of absorption if he is truly eating. Having been in this position mine was from nausea and vomiting.  I don't like to disagree with posts but maybe one milkshake as the previous poster suggested but milk, sugar etc is bad for any cancer patient. The cancer cells love that. Try oatmeal and juices (not fruit vegie) like make carrot apple and celery together twice a day. Add acidophillus caps 3 times a day it helps the bowel absorb the nutrients.  iI he is suffering extreme nausea post again and I have some ideas for that. If you must use milk use heavy whipping cream only and water it down, Make egg custard with a tsp honey. give 2-3 times a day. Light easily digested food is needed. My apologies the previous poster as i know many doctors tell you about the milk shakes and ice cream. When I worked ONcology the doc told our patients to stay off that stuff as well as when I was a pt. hope this helps.mms On 1/30/2008 yosh003 wrote:Hi,I was wondering if anyone can help. My husband had his auto stem cell transplant on 1/10. His hospital course was pretty unremarkable and he came home early, on day 10 post transplant. The problem is he continues to lose lots of weight. He has lost about 30 pounds in 2 and 1/2 weeks. He is eating, but he looks skinnier to me from night to morning and this is confirmed by the scale. Docs don't have much to say, I am worried about the myeloma. Any suggestions/ideas about what is wrong or what to do would be greatly appreciated.Carolynn  mmsurvivor Wed, 30 Jan 2008 00:00:00 GMT Hi Carolynn -- While I have heard lots about 'sugar feeding cancer' the problem you have is that he is losing so much weight so quickly - not what he should or shouldn't be eating!  I remember two dietitians arguing over me in a hospital bed - one was a diabetic dietitian the other was from oncology. Eventually the one from oncology looked at the other and clearly stated: "She's not dying from diabeties!" Basically I was advised to eat whatever took my fancy - the focus was to regain as much as possible, which I understand is not an easy task!I am presuming that he is not eating very much - is that the case?  I lost 50kg over 3 months and ended up in hospice - the outlook was that I was dying.  But my husband began a fight, by enticing me with any and everything he could find.He would bring me ice cream, chocolate, sweets of all kinds, vegies, meat, soup, smoothies -- anything I had ever enjoyed, he found it again and tried!  And because of my love for him, knowing how much trouble he was going through to try to help,  I tried to eat, even if it was only one mouthful with the rest being thrown out -- and very gradually my appitite returned so that I have actually regained 20kg and am maintaining it, 18 months later!  No special diet, no avoiding anything, trying everything!  And I took a bite, knowing that I would probably projectile vomit what I had just put in my mouth - but we kept trying! Our feeling is now that it is important to have 'extra' weight, because if I hadn't had it to lose then I wouldn't be here now.  So, regaining and maintaining is high on our priority list for survival strategies. My message to you Carolynn, despite the rambling, is: please don't worry at this stage about what is 'right' or 'proper' for him to eat right now- just try to encourage him with whatever appeals to him now.  Later, you can focus on the cancer diet you may be looking for, but right now help him to stop losing, stablising, and gradually regaining and maintaining his weight with any appealing food he would like.  Best wishes to you all, Cath poppy/cath Thu, 31 Jan 2008 00:00:00 GMT I agree with Cath. Eat what you can at this stage and don't worry about the "healthiness" of it. One other product that is highly recommended for this type of situation are Whey protein drinks. It comes as a powder in a variety of flavors and you can mix it with milk and even added bananas, etc. in a blender and make a nice milkshake. Highly recommended for cancer chemo patients with weight loss problems. If absorption is an overall problem you can add some liquid minerals to the shake which will help too.Best regards to you and your family.Craig  photog Thu, 31 Jan 2008 00:00:00 GMT  when I was operasted on for lung cancer I did not eat much and I hated Ensure.  My husband would buy the richest ice ccream soften it and make me milk shakes.  It was easier to drink it with a straw ,. Shoeshoe Thu, 31 Jan 2008 00:00:00 GMT The juices have next to nothing for calories or protein so how are you going to gain weight?  You need protein to build body mass, and that was always a focus when we were in the weight crunch.  Lots of protein and calories.  I get the point about sugar, but if you lose too much weight they will not treat you at all, and you become much less likely to survive when you are not nutritionally viable.  I've done the dance over sugar or not, etc.  In this game all that really counts is making it through.  I agree with the premise, but it's hard to pass up all those calories and protein in one of those milkshakes, especially if you can convince the person they actually want it.  We did use an algae protein powder mixed with apple or grape juice for awhile, but he threw it up so many times I stopped. If he could keep it in it gave a real boost, and had the added benfits of the blue green algae, one of which is to increase NK cells in regular users.  But it still didn't have the caloric count you might want. tongrenhealer Thu, 31 Jan 2008 00:00:00 GMT If your husband was not overweight to begin with, and most of us are not, then you might ask your doctor or gastroenterologist about giving him TPN and Lipids infusion.  It will replace all the nutrients that he is losing, and he would not have to worry about eating food.  I am an ovarian cancer patient, on chemo, and after surgery, I was depleted and we did not think that I was going to make it this time.  I was put on TPN and Lipids infusion for about 3-4 weeks daily.  It put my health back to where it was and then some.  Be sure to check with insurance company to see if they pay for it.  It is expensive, but if you can do it, it's worth it.  Rosy cheeks will soon appear. Tell your husband to hang in there. And you take care of yourself too.Hugs,Vicki in Wylie wylieadmin Thu, 31 Jan 2008 00:00:00 GMT  On 1/30/2008 yosh003 wrote:Hi,I was wondering if anyone can help. My husband had his auto stem cell transplant on 1/10. His hospital course was pretty unremarkable and he came home early, on day 10 post transplant. The problem is he continues to lose lots of weight. He has lost about 30 pounds in 2 and 1/2 weeks. He is eating, but he looks skinnier to me from night to morning and this is confirmed by the scale. Docs don't have much to say, I am worried about the myeloma. Any suggestions/ideas about what is wrong or what to do would be greatly appreciated.CarolynnIs he having diarrhea, or just not eating? If diarrheam my hubbys Dr treated him for an inflammed bowel, and got his tummy calmed down..with Entocort, 3 capsules in the am, and 1 at night.. Its for Crohns disease, but has helped him tremendously.. My hubby has colorectal cancer with mets to lymphnodes, and lung, and bone..Hope this helps.. He also had to be hospitalized for 12 days to work this out... He's on his 3rd round of chemo right now.. mostly for bones.. lymphnodes are clear and 1 lung.. he previously had 29 treatments starting in July of 06, with a break during 07 to get him stronger .. Don't give up.. is our motto.. If you have any further Qwestions, we've experianced alot.. so maybe more advice later... Ms C Mscheryl103 Thu, 31 Jan 2008 00:00:00 GMT Try ensure  mixed with ice cream in a blender. I don't like the taste of ensure either, but mixed with some ice cream makes it taste better. Might try adding some fruit in a blender with it.My gastro doctor said eat anything and everything I can to keep the weight on.  She is working with my oncologist.  She also has me on hydration every day with potassium and magnesium in the hydration (I have sores in my mouth and I cannot swallow my pills right now). This has helped with issues concerning my blood work too. When we get dehydrated, it messes with other things in your body.  Home healthcare brings me all my stuff.  They also come to the house and do my bloodwork so I don't have to travel.  I can drive to the doctors, but she wants them to come to my house.  Another thing for the yeast in the digestive tract - Thrush - mouth sores, is ask for the miracle mouthwash...it can be made up different ways.  My gastro doctor gave me the one made with lidocaine, nystatin, and benadryl.  My oncologist gave me one with lidocaine, maalox, and benadry, and a separate bottle of nystatin (this is the one for yeast, thrush and mouthsores-it works). I take the one with lidocaine, nystatin and benadry right now.  Easier to use one bottle instead of two.Cancer cells do like sugar and dairy. But he needs to build up before worrying about that right now.  Fruits, veggies, meat, gravies, milk, weak tea decaffienated, coffee decaffienated, ginger ale, coke if his stomach is upset and he can tolerate it, and I drink lemon-lime (yellow) gatorade with lots of ice.  The gatorade will help with replacing some electrolytes, as well as an adult version of Pedialyte...I just don't know what that would be.  Get him built back up first. then worry about the no-no foods.After surgery, we all lose weight for a few weeks unil we stabilize. I think it is such a shock to our system. wylieadmin Thu, 31 Jan 2008 00:00:00 GMT  On 1/30/2008 yosh003 wrote:Hi,I was wondering if anyone can help. My husband had his auto stem cell transplant on 1/10. His hospital course was pretty unremarkable and he came home early, on day 10 post transplant. The problem is he continues to lose lots of weight. He has lost about 30 pounds in 2 and 1/2 weeks. He is eating, but he looks skinnier to me from night to morning and this is confirmed by the scale. Docs don't have much to say, I am worried about the myeloma. Any suggestions/ideas about what is wrong or what to do would be greatly appreciated.CarolynnCarolynn: Try juicing (fresh fruits and vegetables).  I went through that with my mom and fresh juices go right into the bloodsteam.  Whatever you do, keep him away from sugar!  Sugar feeds cancer...it has been proven.  Everything you eat has sugar in it...artificial and natural.  Try the juicing or some of those sugar free boost and energy drinks.  Godd luck and take care of yourself.    Dortmund Thu, 31 Jan 2008 00:00:00 GMT  On 1/30/2008 yosh003 wrote:Hi,I was wondering if anyone can help. My husband had his auto stem cell transplant on 1/10. His hospital course was pretty unremarkable and he came home early, on day 10 post transplant. The problem is he continues to lose lots of weight. He has lost about 30 pounds in 2 and 1/2 weeks. He is eating, but he looks skinnier to me from night to morning and this is confirmed by the scale. Docs don't have much to say, I am worried about the myeloma. Any suggestions/ideas about what is wrong or what to do would be greatly appreciated.CarolynnYou have provided limited information however,I am a dietitianYes sugar feeds cancer cells as well as the other cells in our bodies.Whether you eat sugar or starch, when it hits your blood it is SUGAR. At this time, the most critical nutrients to get are in order fluids, calories and protein along with electrolytes vites and minerals.Whey protein drinks are great whether you purchase them ready made or make them yourself.  A multivite - one a day type is appropriate.Recipe: basic - 1 cup milk, 1 cup ice cream, 1 "scoop" protein powder , I prefer the flavored ones, think Walmart, Safeway etc.You can add fruits, yogurt, flavorings for variety.  4 of these will provide about 1800 to 2000 calories a day and will put weight on may folksFor variety use juice (YES JUICE with all its SUGAR c louise Thu, 31 Jan 2008 00:00:00 GMT Continuing with the previous - I guess I hit a key which sent it before I was readyJuice 1 cup w/ sherbet 1/2 c, a scoop of whey powderVariety and flavors you like are important.  You can add fruit or whatever you take a whim to add.  With mouth sores, anything acidic may hurt so be careful.Try to keep eating anything else you may like to try but this can put on weight.  You do want to know if there is any malabsorption going on as this may have a major effect on ability to gain wt.  If you can keep track of intake, using calorie and protein info from pkg or try using "mypyramid.gov" and obtain it  from there. Do not use this info without letting your treatment team know what you are doing so they can eval how it is working and let you know if any adjustments are needed for any particular problems that may be occurring.  You may want to be sure there has not been an onset of diabetes - yes it has been known to occur.  If weight loss continues iv nutrition may be indicated, again check with your treatment team.  It does come with some risks and special needs to be tended to.  Your nutrition treatment should be guided and further evaluated to be customized as your needs indicate; the information in this and the preceding mail are general recipes to try and do not allow for any other intolerance which may be occurring.  If it creates probelms, don't continue with it.  It also assumes no lactose intolerance, other intolerances or allergies.I hope you find this helpful. c louise Thu, 31 Jan 2008 00:00:00 GMT Hi Carolynn!  You have some great help here, particularly from wylieadmin and clouise!!  I spoke about your situation with my oncology dietitian and she agrees with all of what these writers have said.  I raised the question of sugar and her reply was similar to louise, SUGAR feeds all of the cells in our bodies.  Restricting sugar at this stage is totally wrong -- he needs it for energy and to help him to gain weight, along with the protein, etc.  Take heed of the positive advice you have here and confirm it with your own medical team.  Encourage him to eat anything you can -- sweet, high protein, carbs, etc. and help him to gather strength to face his next battle.  The stronger he is the higher the prognosis that he can survive.  Radically changing the diet at this stage, from my uneducated perspective, would be totally wrong.  I don't know about your oncology department, but here the first thing that they do before EVERY visit is to weigh me.  As long as I maintain or gain weight then all is well, but if I've lost...the the first conversation is about why and how we can encourage me to regain!!  It takes presidence over everything else -- its that important!!    Good luck to you Carolynn -- it won't happen quickly, but it is possible ... one bite at a time!!  Cath poppy/cath Thu, 31 Jan 2008 00:00:00 GMT Hi Carolynn,I can't tell you what is wrong, but I can tell you what we did when my husband had this problem.  My husband also lost a lot of weight in a short amount of time.  Although he was eating he was eating much smaller portions.  After a 40 pound weight loss his oncologist put him on Megace, which has helped the problem, it stimulates your appetite.  He hasn't gained his weight back, but he hasn't lost any more weight either.Hope this helps. Candy Candy P. Tue, 05 Feb 2008 00:00:00 GMT i think i am the only person to gain weight after a SCT. in fact, i gained 40 pds in 6 month, so now i am deiting. this how i did it.no fruit eat salad for your fiber...fruit will only remind the patient of the SCT and make him sick to his stomach. when you recieve your stem cells back through your portal, you get a fruity taste in your mouth and after that you will start to vomit.you dont lose your taste but it does beome dull so eat food with a kick. for example, i must ate a ton of hot wings and spicy fries from applebees. i also added jalapenos [like bake potatoes] and hot sauce to everything i ate. i ate a lot steaks because steak tasted the same.i ate a lot of cookie dough ice cream with carmal topping.i ate a lot of salads with a lot of blue cheese topping because cheese tasted the same.find foods that taste the same before the SCT and stick with it until your taste return.foods that taste wrong add something to give it a kick that way you taste what you are eating.if you worry about nutrition take vitiman pill.i ate a lot of fatty foods because it tasted close to normal but do not over do it because you be dieting later.  scqttv Fri, 21 Mar 2008 00:00:00 GMT