Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 Aviva, Hopefully you receive leads but if not, there's a patient support network run by Lymphoma Research Foundation (LRF) that tries to match people to volunteers with similar dx and characteristics like age, geographic area, etc. Just go to their website, click and hold on For Patients, scroll to " Patient Support " and then click on the " Lymphoma Support Network. " There you or your son will find a questionnaire to complete that will assist them to find the best match. Cancer Care also used to have a matching program. I was matched with 3 or 4 people and among them was one who lived within 3 miles of my house. We became good friends and got each other through some dark days in the first years. -Ellen D. > I am wondering if anybody knows a young( approx 37/40’s ) patient with > cll/sll that has undergone successful rx and has a positive attitude > to support my son in law in the Berkeley/ Sfco area who is undergoing > treatment for sll now. > > Any leads are greatly appreciated. > > Aviva > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 hi Aviva - IT is so scary to get a diagnosis of cancer, of any type. But as my oncologist said, I happened to get one of the better ones. I was diagnosed with CLL Stage IV in my early 40s.I had a young son at the time, and was feeling horrible -- no energy (hemoglobin of 5.5!), huge ugly nodes, constantly sick. After my first month of treatment with fludarabine and rituxan, I felt amazingly better. I went on to receive rituxan and fludarabine for 4 months, followed by about 6 months of antibiotics(treatment wipes out the immune system, leaving you susceptible to infection). I'm now 50 and feeling good generally. Life is back to normal. I keep in touch with my oncologist, but am a little delinquent since I feel great for a (now) old lady! I do not think of it very often. On the other hand, my mother-in-law has been in watch-and-wait mode for 2-3 years. Your son should definitely have hope. Not only are current treatments pretty effective for many people, but I've been following these posts on and off for quite a while and have seen that new treatments are being developed. I wish him all the best!!! Marietta > > I am wondering if anybody knows a young( approx 37/40's ) patient with > cll/sll that has undergone successful rx and has a positive attitude to > support my son in law in the Berkeley/ Sfco area who is undergoing treatment > for sll now. > > Any leads are greatly appreciated. > > Aviva > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 Aviva, The Leukemia and Lymphoma Society also has a " First Connection " program to match people in the same way. Karni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2009 Report Share Posted June 5, 2009 Hi, Well, I am a lady, and I will tell you some of the things that helped me more than anything. Don't be alarmed about how little food we eat that 1st month. This is very normal. Be there and be supportive and don't hover over her--give her some space unless she asks for things. Treat her like you always have. Going out to eat is really difficult that first month and eating at home really is a lot easier. Go grocery shopping for her before she leaves to have the surgery and get the things she needs to have in the kitchen to eat ahead of time. Protein is very important to have. And protein that tastes good is really important. "UNJURY" was good and you can order that on line. www.unjury.com Isopure is like "Pond Scum" and a lot of people tell you to buy and drink it for Protein--Yuck--most of us hated it!!!!!! Listen to her when she talks about what it is like. You will never really know because you are going to be eating what your normally do. It effects you brain and your way of thinking--at least it did for me--I knew what I wanted and what I didn't want--my whole world of eating changed. It is like a retraining of your brain. Once you start eating foods that you have to chew--you need to take tiny bites and chew, and chew and chew some more--so it take a long time to eat--be prepared for that. I can tell you that now, but you will have to experience it to know what we are talking about. Some times you just get tired of chewing and push the plate away because you are tired of eating and you are full and satisfied pretty easily. The 1st 30 days is the hardest to do, after that it really does get a whole lot easier. I am very proud of you for getting on this site and wanting to know how to help. You are a rare man, and we welcome you. He incision will heal nicely and you won't need to do anything. They will send information home with her on how to take care of it. It is only 5 small slits across her stomach. Keep telling her how great she is doing and when you notice how she is losing weight tell her that you notice. Bob was absolutely fabulous when I got home. He had made Jello for me and fixed my chicken broth that first night. He knew sometimes I had a difficult time sleeping at first and he wouldn't get concerned about me because he knew I was sitting out in the living room in the middle of the night watching TV because I didn't want to disturb him. Encourage her to go on walks with you after about a week. The exercise is what she needs. So keep coming back here and asking all of us questions. This honestly will be a life change event for her and you, and you will be on this journey with her. Thanks for asking us. Suzanne 225 150 125 Start Now Goal Sleeved 10/21/08 In a message dated 06/05/09 13:50:04 Pacific Daylight Time, beardeditalian48@... writes: HI---My fiance is having her surgery on the 11th of this month. The sleeve surgery. (thought I should tell you what--youall cant read my mind)I am not worried about her having it, what I am concerned with is WHAT should be MY role in all this? What can I do? What can I expect--I just read that she will be 'leaking' I can and will change that. But I would like to know from you guys is what would be the best way I could help her get through the initial three weeks? ThanksB Wanna slim down for summer? Go to America Takes it Off to learn how. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2009 Report Share Posted June 6, 2009 Hi. What a wonderful guy you are!Had my lab band surgery about 6 weeks ago and my fiance went with me. He suggested a most of these for you. ***The 1 thing that REALLY impressed me was the amount to knowledge he had about the procedure, diet, recovery process, etc. He was a walking book about it. Wow... He really took the time to learn and asked a lot of questions.Prepare for some possible bitchy moods and snappy comments -- the unknown is scaryBe a good listenerRemind them to drink slowly, little amounts, not to over do it, not to be frustratedWhen at the mushy food stage, eat tiny bites, chew chew chew, little amounts, etc.Learn all you can about the procedure, recovery, diet guidelines, healing process, etc.Know when not to say anything and just hugAsk how they feel, talk about it, talk about any fears, goals, etc.Shop for your fiance and have many things on hand at home (see below)If you have a cat/dog, stock up on dry/canned food and litter ahead of timeIf they are a reader, get some books or magazinesMake it a point to go for walks, even if they really don't want to, it is important to doMake friends with others there along with other patients, you can support each otherWhen they pass gas from the surgery (I was mortified), be nice :-) Pretend not to hear itThe hospital and hotel have wifi - bring your laptop, books, magazines, etc.Do as much as you can around the house to help her - picked up house = happyMake a tracker for refrigerator door - track protein, what eaten/drank, vitamins, calories, etc.Give positive/supportive comments, have humorShopping ListProtein powder - unjury (unjury.com) is fantastic (suggest 5-6 containers)Bottled Water (if they are a bottled water person)Crystal light sugar free drink mixCanned beef/chicken/veggie brothFrozen fruit popcicles - no sugar added (absolute life saver in my opinion - 30 calories each)G2 sports drink (from Gatoraid)Miso soup mixApple JuiceSugar free jello Chewable vitamins Non stick surgical tapeCotton padsPill splitter/crusher (for any prescription drugs)Gas X strips - also bring along with you to MexicaliHope this helps you. The best to you two!From: Starts with and ends with the same letter <beardeditalian48@...>Subject: SUPPORT Date: Friday, June 5, 2009, 7:54 PM HI--- My fiance is having her surgery on the 11th of this month. The sleeve surgery. (thought I should tell you what--youall cant read my mind) I am not worried about her having it, what I am concerned with is WHAT should be MY role in all this? What can I do? What can I expect--I just read that she will be 'leaking' I can and will change that. But I would like to know from you guys is what would be the best way I could help her get through the initial three weeks? Thanks B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2010 Report Share Posted September 17, 2010 Im going to need all the support I can get to manage this candida mess!! Any suggestions are greatly appreciated. Thanks Quote Link to comment Share on other sites More sharing options...
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