My DH was diagnosed with CLL (chronic lymphocytic leukemia) in July...the oncologist said it was stage 2 because of his enlarged spleen. At that time, he recommended a "watch and wait" approach before giving any type of treatment....this meant regular bloodwork, and watching for symptoms of increased fatigue, night sweats, bleeding, bruising. He was doing fairly well until this past Nov. whhen we went to see the Oncologist, and his labs showed anemia, with further testing it was determined to be due to the CLL, and therefore we were told he may have to have some chemo treatments if it worsened, which it did the following month. So much so that he needed a transfusion on Dec. 28...about a week later he needed another transfusion, 2 units of red blood cells. Now we are waiting to see a surgeon so DH can have a mediport inserted inorder to begin some mild chemotherapy which his oncologist/hematoogist feels will bring his anemia under control and lower his WBC counts. We have actually consulted with another Oncologist at Roswell Park Cancer Institute, and she agrees with all the recs of our local Oncologist. Our children and I agree to try these treatments in the hope that DH will have a better, more comfortble quality of life. It is not easy making him understand what is happening, but he is cooperative most of the time, when I tell him he will feel less tired. He has lost around 30 lbs since all this began, he looks so pale and is so tired. So dealing with this along with the AD is quite the challenge for us. Trying to remain hopeful, and if the treatments are too taxing and difficult for him, our children and I will do what is best for his comfort. I guess I just wanted to let all of you know what is going on, because I consider you my family too, and also to ask for your thoughts and prayers. With love, Kathy
Kathy - so sorry you must deal with yet another problem. My dh has lymphoma and will have scans etc. next week. He has not taken treatments for over a year and I hope he will not need any this time either. He still understands but is mixed up on how long since treatment,etc. The latest treatments he has been taking did not cause sickness as earlier ones had. I pray that your dh can be easily treated - cancer treatments have come along way since we began this in 1983.
Bella & Flo: Sometimes I think that I am the only one with this problem, but, then someone, like you all, post about the same thing and I realize that I am not alone. That (strangely) is somewhat comforting. My DW is a non-Hodgkins Lymphona patient and has been since 1998. We have achieved remission twice, but, it is a losing battle. Now, with Altz., me and the children with the Onc approval decided not to treat the cancer anymore. The last blood transfusion almost drove her wild not understanding why the needles and why to try to be still, etc. In 2010, she had 4 blood transfusions, but only 1 last year.
Please don't misunderstand me, this was a very difficult decision and I sometimes doubt the wisdom of it, but, I think it is right and that is all I have to go on.
Dean---I really think the decision you and the family came to is the right one. After my DH's Dx,I spoke with his Drs. and our policy is that tests and treatments will be event driven. If he can't cooperate with testing or treatment, why on earth should he be made to endure them. Obviously, if he gets hurt, he has to be treated, but going looking for more problems to treat(and probably can't be fixed) makes no sense, and would create more issues for him. Going by his wishes (discussed long before Dementia came along), we aren't going to do anything to prolong this. He will be keptassafe, comfortable, andcontent as we can manage.
My H's dx has changed many times, even as recently as today.
Everyone here has a unique situation. Mine is that H has a seizure disorder that may, or may not, have either caused or contributed significantly to his dementia. It depends on the coding, I guess.
Regardless of that, the main influence on his treatment is that certain meds that may help his dementia are ruled out because of the risk of further seizures, and he has been coded status.
I don't know what else to say. No more about me, just hoping the best for you and yours.