Angelz: Thank you for your reply-post.
Communities such as WhatNext help me gain perspective on my living in Survivorship. Which I've found to be an ever evolving lansdcape.
Thank you for contacting me, sorry but has been very hectic at home. I was so glad you contacted me. It sounds very similar to my husbands with the enlarged nodes. My husbands lymph nodes are very enlarged. I am getting very concerned at the watch and wait. My husband has been having sinus issues and infections since early last fall. His eyes are also watering all the time and has been using nasal spray everyday. We recently saw the Physicians Assistant for a 6 month follow up, besides not ever seeing his doctor at any of these appointments, when asked, she said the sinus issues were not due to his lymph nodes being so big around his neck and to go see a ENT Doctor. Plus we were told they were going to do extra tests at this visit and just drew blood like every other visit. Then she said there was nothing new out there for CLL, I asked her about some of the new trials and research being done and she knew nothing of any of them. I then proceeded to tell her about some things I have been researching and she did not know. I would expect if they are specializing in this they would have the info. I think the clinic we are at is too broad in their practice and deal with all cancers and do not have anyone who specializes in one area. I think it is time for a second opinion, I do not just think I know it is. Do not know off hand where to go but am going to start the search.
Thanks again and best wishes to you. Keep in touch I would like to know how you are feeling after the nodes drain and go down. Prayers and God bless.
Thank you, Outlier, this is very encouraging. It helps to hear from you and others who are surviving with the same cancer.
Just wanted to check up with you and find out how you are doing? Hope the support group is helpful. I tried to post back couple weeks ago but couldn't get it to work. Could have been me or our computer. My husband was diagnosed in November 2010 with stage 4, watch and wait. I think he is going to need treatment soon. It took a long time to talk my husband into going into the doctor because we noticed his glands were swollen, he was tired a lot, and had body aches. We had the Doctor do blood work, the lab called and said they did not see anything unusual. He was to come back in a couple weeks if he still was not feeling well. It took about three weeks to talk him into going in again. I was going to make an appointment on the next Monday, well funny our Doctor called on that Sunday. The Dr. was not working but was thinking about my husband’s symptoms and wanted him to come in for more tests. I asked him what made him think of him, he said he had a person come in with similar symptoms, but did not tell us what was wrong. We found out after the lymph node was removed and the bone marrow test that it was CLL. I think the tiredness is part of the cancer. My husband has days he does not feel well and is very tired. When he feels like this he stays in bed most the day. He still pushes himself to go to work and what does not help I lost my job. He is not lazy and you shouldn't feel lazy. Take care of yourself listen to your body and take time to rest when you need to. I saw someone talk about vitamins and would agree there are supplements and foods that can be helpful. if you are not comfortable with your doctor I would maybe get a second opinion. I noticed you are in stage 0 and I do not know if this means it is in the bone marrow. It has been a while when my husband was diagnosed but when they went through the stages I thought they said sometimes they treat CLL if it is in the earlier stage and not in the bone marrow? Just curious if anyone knows? Glad to see Outlier has told of their remission, because I think my husband believes this is a death sentence. I am try to tell him he will make it through this and I keep him informed of new research, drugs, and survivors. I am constantly searching especially now that I am not working, of course in between looking for a job. :-) Keep positive hopefilled thoughts Cindy! Prayers and God Bless!
I read your post regarding your husband. I wad diagnosed at stage 4, had large nodes removed and chemo (FCR) immediately after. I am now 20 months out and the lymphoma and leukemia are just draining!!! I feel the same as your husband and never want to get out if bed.... It's a struggle to get up at all. I hope he is going.ok.... Please keep us posted. God bless
Hi Cindy, I am glad you found a group for support. My husband is tired and has been having a lot more days of not feeling well. He says he feels a lot of drainage in his sinuses and nose, I don't think related to colds. His glands are swollen all over, especially the neck area. The kids do not want to talk about it either, but I try to bring it up once in awhile so they know where things are with it. Our son who is 14 worries so I had the counselors at school talk to him. They let me know what his concerns were and found out he felt we were not giving him enough information, even though it seems they do not want to talk. Did you read the story of the girl, Emma Whitehead, last year treated by genetically engineered blood cell, this gives us hope.
Sorry your husband is sick. It sounds like he is even more sick than me. I dont have bad blood work, my glands arent realy swollen, and i am on watch and wait. I went to the dr yesterday and doc said its probably from my depression. I dont think so. I have a lot of fun sometimes at work and at home but then i just peter out. I get so sleepy and lazy. Ive been in bed all day but im not sad. What should I do?