CancerCompass message board discussion started by worriedsickmother on 3/5/2008 http://www.cancercompass.com/message-board/message/all,21700,0.htm Tue, 07 Oct 2008 00:00:00 GMT Tue, 07 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi there, my name is Gail, and my son who is 21 has just been diagnost with lgl leukemia, they (the doc's) say it is the better varaint of the type that he has. We just three weeks in the hospital, 2 to find out what was going on and one  to figure out what type and what treatment. So now he is home and on a once a week chemo pill and a steriod and pain meds.we have to get his blood drawin once a week, for 4 wks, then drive back to San Francisco to see his doc there. In the mean time i am told that he is very suseptible to getting sick because of the immune system being so week. I AM SCARED, and God only knows how he is feeling inside. This came out of nowhere. My son has already survived a gun shot wound to the chest when he was 13. now he is hit with this. I was hoping to get some insight on what to expect in the weeks to come and what his future holds for him with this disease. Any information you have to share is greatly appreciated as we are just starting learn and absorb this. Thank you all and God Bless each and all. worriedsickmother Wed, 05 Mar 2008 00:00:00 GMT GailI am so sorry. My husband age 48 was diagnosed in March.  I found out that even 48 is young for this disease so your son is very young.  There are many treatments out there and a person can be in remission for many years and live a very healthy life.  I do know that you have to stay on top of it all, you have to know what is going on and do not be afraid to ask your dr questions.  If you dr will not give you the time, find another one.  My husband is begining his 3rd Chemo round on Monday.  He is able to tolerate the treatments well so from now on he does not have to do them in the hospital.  The big issues are his Red blood Cells just keep dropping to the point of needing blood transfusions. He has had 4 since his diagnosis.  The dr is doing another bone marrow biopsy and will change the treatment, my husband also take Nerupogen after the chemo to help protect him from any illnesses since the white blood cells drop too as well as another injection for the Red cells, I found I can give him those myself which works better for him. I do not know if your son shares his thougths but my husband has told me that he feels very out of control right now.. that he has this strange controlled anger within.. somedays he is very down and others he is fine.  I think that now he is taking a very active role in his treatment and I think that has helped him emotionally.  I wish you and your son well.  MicheleM Thu, 15 May 2008 00:00:00 GMT Hi Michelle, thank you for responding to my message, I cling to all information I can get and am sorry that your husband is going through this also.But please know that your information is helpful and comforting, make me feel less alone. I have'nt really talked much to his Dr. other than listen to what he says we should do that's why I went to this site . I am still trying to figure out all the numbers on the blood draws, and so far my son(justin) is doing okay. I just notice the changes in his behavior and worry alot. He is not very forth coming in his feelings yet, he is still in the why me stage i believe. He too has his good days and his down days when he sleeps for two or three days. He has been fishing alot lately and I think that helps. Do you know if there are stages to this type , I know that we have to watch the blood cell counts and wonder if as this progresses we will need blood trans too. I know we will have a bone marrow transplant in the next few yearsand I am reading all that I can on that. Is that in your treatment paln as well? Well again I thank you for sharing with with me and would love to stay in touch , I don't know why but it does comfort me to hear from others and to share progress and treaments. I wish you and your husband all the best and keep you in our prayers also. On 5/15/2008 MicheleM wrote:GailI am so sorry. My husband age 48 was diagnosed in March.  I found out that even 48 is young for this disease so your son is very young.  There are many treatments out there and a person can be in remission for many years and live a very healthy life.  I do know that you have to stay on top of it all, you have to know what is going on and do not be afraid to ask your dr questions.  If you dr will not give you the time, find another one.  My husband is begining his 3rd Chemo round on Monday.  He is able to tolerate the treatments well so from now on he does not have to do them in the hospital.  The big issues are his Red blood Cells just keep dropping to the point of needing blood transfusions. He has had 4 since his diagnosis.  The dr is doing another bone marrow biopsy and will change the treatment, my husband also take Nerupogen after the chemo to help protect him from any illnesses since the white blood cells drop too as well as another injection for the Red cells, I found I can give him those myself which works better for him. I do not know if your son shares his thougths but my husband has told me that he feels very out of control right now.. that he has this strange controlled anger within.. somedays he is very down and others he is fine.  I think that now he is taking a very active role in his treatment and I think that has helped him emotionally.  I wish you and your son well.    worriedsickmother Thu, 15 May 2008 00:00:00 GMT