robjenn12 Posted September 27, 2008 Share Posted September 27, 2008 My fiance, Robert, age 47, was diagnosed with sclc in 8/08. Since this time life as not been the same. I am looking for any emotion support to help guide me, help Robert, thru this journey. This is all new and very scary. He has already received two weeks of chemo, but had to be hospitalized recently due to low platelet and red blood cell counts, with transfusions. He has lost 12 pounds since last week and has multiple sores in his mouth, causing pain when putting any fluid of food in his mouth. Does anyone have any suggestions for me to help him regain any weight? This is a very scary time for both of us and our families. Any advice would be a God send. Quote Link to comment Share on other sites More sharing options...
SandraL Posted September 27, 2008 Share Posted September 27, 2008 Hi Jennifer. I am so sorry to hear about your young fiance Robert. It is such a scary time. Getting through chemo can be tough and it sounds like he is having a tough go of it. I hope they get him feeling better and that he can resume treatment soon. There are many kind supportive members here ready to answer any questions you might have and just support you generally. Please keep us posted on how you and Robert are doing. Sandra Quote Link to comment Share on other sites More sharing options...
recce101 Posted September 27, 2008 Share Posted September 27, 2008 Hi, Jennifer, welcome to the group. Be sure the oncologist knows that the mouth sores are interfering with nourishment. Sometimes a special mouthwash can be prescribed to anesthetize the mouth and throat immediately before eating/drinking. This is most frequently done for patients undergoing radiation which affects the esophagus, but it might be helpful for severe chemo-induced problems as well. If you're unable to contact the doctor because of the upcoming weekend, an experienced pharmacist might be able to suggest a non-prescription product that can help in the interim. I had problems eating while I was on Taxol/Carboplatin in late 2006, but never to the point that I couldn't drink cool, smooth liquids -- Robert must be having a rougher time than I did. In extreme cases a percutaneous endoscopic gastrostomy (PEG) tube can be installed so liquid nourishment can be put directly into the stomach, bypassing the mouth and esophagus temporarily. When the tube is no longer needed, it is removed. See this: http://www.oralcancerfoundation.org/den ... eeding.htm Best wishes and Aloha, Ned Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted September 27, 2008 Share Posted September 27, 2008 Hello Jennifer and welcome to the "family", I am so sorry you and Robert had reason to find a site like this but I am glad you have joined us. This site is full of wonderful, caring and compassionate people. Please let the doctor know that Robert is having the problem with mouth sores. There is a wonderful mouthwash, commonly referred to as "Magic Mouthwash" that is a mixture of lidocaine, Maalox and Benadryl that will coat his mouth and throat and ease the soreness so he will have some relief from that pain. As far as nutrition, Boost, Ensure, milkshakes are all great ways to get some calories into him. Cream soups made with heavy cream, smoothies, etc are all good ideas. The MOST important thing to remember is to keep him hydrated.. WATER, WATER, WATER and more water! Dehydration is major problem and can be serious. Please keep posting and let us know how we can help and keep us posted on Robert. Warm hugs Christine Quote Link to comment Share on other sites More sharing options...
Patti B Posted September 27, 2008 Share Posted September 27, 2008 Jennifer- Welcome to the group. Sorry you need to be here but you really have come to a great place for support, friendship and information. You have received some good information already and it really is important to keep him hydrated. I agree with the idea of milkshakes, ice cream, anything he can tolerate. Please call your doctor for prescription help. Please keep us posted on how both you and him are doing. Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
robjenn12 Posted September 28, 2008 Author Share Posted September 28, 2008 A BIG hug and thank you to those who responded to my cry for help. Robert has been taking Magic Mouthwash, however it doesn't seem to be doing much for him at this time. I can't tell you what stage his cancer is in because he has told the doctor he does not want to know what stage and how much time he has left. He wants to be as positive as he can. However what I can tell you is it has spread from his right lung to his liver, to his shoulder bone, a few ribs, and a few vertebrae. This to me sounds like a death sentence. I try to be upbeat at home, but when I am at work, or just in my car alone I can't stop crying. Even when asked by friends, how is he, I can't even finish telling them without breaking down. He receives Carboplatin, Irinotecan, every Monday for 3 weeks, with an off week the fourth. He has also agreed to be in this clinical trial where he takes Sutent, which is used in kidney cancer. He doesn't know how to feel about being in a clinical trial, but states he will do anything to get better. I, on the other hand don't know how to feel about this. All I know is I want the doctors to do whatever it takes to help him. He has only received two week of chemo before he had to be admitted back to the hospital for rectal bleeding, low platelets, and low sodium level. I have on hand ice cream, juice pops, jello, pudding, apple sauce, ensure, carnation instant breakfast, milk, buttermilk and soup, but he still is unable to eat. I get so disgusted, not at him, just at what and how this has changed our lives. Anybody please tell me it will get better. Quote Link to comment Share on other sites More sharing options...
RandyW Posted September 28, 2008 Share Posted September 28, 2008 I used to be the same way!! Frustrated!! What I did was have talks with god ! Under the stars at nite! said everything on my mind yelled screamed cried whatever I felt like doing. then apologized and came inside feeling better.. Let it out just let it out whenever the mood strikes do what feels right people will learn to understand Quote Link to comment Share on other sites More sharing options...
Linda74 Posted September 28, 2008 Share Posted September 28, 2008 I am going through the same thing with my husband. He refuses to eat. His cancer is in the spine, ribs, lungs, adrenal gland, and we are awaiting the results from the brain MRI and abdomen cat scan. He has aged 30 years in 5 weeks. Our daughter is getting married next week and I am afraid that he will not be well enough to walk her down the aisle let alone be at the wedding he has saved and budgeted for so long. Chemo starts on Tuesday. I just wonder if he is strong enough for it......He is on phentanyl, celebrex, oxycodone and lidocane patches for pain, and even that does not cut it. The constipation even with meds is also a problem. When you love someone, it is so hard to see them suffer. This website is a source of inspiration and my daughter and her fiance are donating to the lungevity foundation in lieu of favors at the wedding. Hopefully, we can get the word out about the underfunding for LC support......thanks all for listening Quote Link to comment Share on other sites More sharing options...
coni Posted September 28, 2008 Share Posted September 28, 2008 Welcome to the group ..so very sorry you had to come here..I'm going through the same with my hubby. you can PM me anytime for support. Quote Link to comment Share on other sites More sharing options...
shellit74 Posted October 1, 2008 Share Posted October 1, 2008 Jennifer, Welcome to the group. I am sorry to hear about your fiance. I hope you are able to get the mouth sores under control and that he is able to eat better soon. Dont be afraid to ask any question that you have on your mind, I am sure that someone here has gone through most anything you can think of, so you would be sure to get some sort of answer(s)! Good luck to you and your fiance. Shelli Quote Link to comment Share on other sites More sharing options...
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