grecarmar
@grecarmar
@grecarmar
Posts: 14
Joined: Jul 24, 2018
CLL - Spleen
Hello @grecarmar. I'd like to invite a few members to this discussion that have discussed enlarged spleens and removal of spleens in addition to having a blood cancer. Although a few of these members had a different type of blood cancer, they may be able to share their experiences with the spleen. @scsimpson, @bordercolliecra, @caroldk, and @shaker1956 all discussed having an enlarged spleen or some sort of spleen issue.
@grecarmar, would you mind sharing, if you are comfortable, what your provider had to say about your enlarged spleen result?
I’d like to join in on this discussion. I have a blood disorder & before I received my final diagnosis, I, unfortunately, received a splenectomy.
shaker1956
@shaker1956
@shaker1956
Posts: 100
Joined: Jul 28, 2018
I’d like to join in on this discussion. I have a blood disorder & before I received my final diagnosis, I, unfortunately, received a splenectomy.
Hello all. I have CLL and thus had a very enlarged spleen because of it. The average spleen is 12-14 CM’s in length and mine had grown to over 21 CM’s in length. This was a very dangerous situation for me as I continued to be active in sports, more specifically cycling and hockey. Even though I’m 62 yrs of age, I really give er. Lolol. I go all out. When I was diagnosed last Sept, I was totally shocked at what could have gone wrong if I had burst or damaged my spleen. It held a lot of blood. If I had been is some type of accident on my bike or was injured playing hockey I would have bled out. I was sure careful with what I was doing after that. I’m also happy to tell you that after 12 shots of chemo my spleen has gone down to 14cms. I had a CT scan and I’m 100%in remission from this horrible disease—- if I can call it that. I’m not a religious person but I do believe in God. I know he was on this journey with me. I can never be cured as its in my bone marrow but at least its in remission. So its blood tests for me every 3 months. I’m ok with that. A buddy told me “at least youre on this side of the grass”!!!!!! Amen to that!!!!’
Hello all. I have CLL and thus had a very enlarged spleen because of it. The average spleen is 12-14 CM’s in length and mine had grown to over 21 CM’s in length. This was a very dangerous situation for me as I continued to be active in sports, more specifically cycling and hockey. Even though I’m 62 yrs of age, I really give er. Lolol. I go all out. When I was diagnosed last Sept, I was totally shocked at what could have gone wrong if I had burst or damaged my spleen. It held a lot of blood. If I had been is some type of accident on my bike or was injured playing hockey I would have bled out. I was sure careful with what I was doing after that. I’m also happy to tell you that after 12 shots of chemo my spleen has gone down to 14cms. I had a CT scan and I’m 100%in remission from this horrible disease—- if I can call it that. I’m not a religious person but I do believe in God. I know he was on this journey with me. I can never be cured as its in my bone marrow but at least its in remission. So its blood tests for me every 3 months. I’m ok with that. A buddy told me “at least youre on this side of the grass”!!!!!! Amen to that!!!!’
I’m not familiar with CLL, can you explain? Thanks!
SteveSmzl
@scsimpson
@scsimpson
Posts: 9
Joined: Aug 19, 2017
Hello @grecarmar. I'd like to invite a few members to this discussion that have discussed enlarged spleens and removal of spleens in addition to having a blood cancer. Although a few of these members had a different type of blood cancer, they may be able to share their experiences with the spleen. @scsimpson, @bordercolliecra, @caroldk, and @shaker1956 all discussed having an enlarged spleen or some sort of spleen issue.
@grecarmar, would you mind sharing, if you are comfortable, what your provider had to say about your enlarged spleen result?
Hello @grecarmar
I do not have CLL I have splenic marginal zone small B cell Lymphoma. I had a splenectomy in July 2017. Before I had a splenectomy my spleen was 15 cm x 8 cm x 20 cm. 3 months after I had my spleen removed I had 4 weeks of rituximab. Am now in remission. I am not sure if this will help you but if you have any questions I will be glad to try and answer them.
grecarmar
@grecarmar
@grecarmar
Posts: 14
Joined: Jul 24, 2018
Hello @grecarmar. I'd like to invite a few members to this discussion that have discussed enlarged spleens and removal of spleens in addition to having a blood cancer. Although a few of these members had a different type of blood cancer, they may be able to share their experiences with the spleen. @scsimpson, @bordercolliecra, @caroldk, and @shaker1956 all discussed having an enlarged spleen or some sort of spleen issue.
@grecarmar, would you mind sharing, if you are comfortable, what your provider had to say about your enlarged spleen result?
I am scheduled to see my primary care provider tomorrow, so I'll see what he says. Right now, all I have is the analysis of the doctor that reads the CT scan. I'll be seeing my hem-onc in December for my six month checkup.
grecarmar
@grecarmar
@grecarmar
Posts: 14
Joined: Jul 24, 2018
Hello @grecarmar
I do not have CLL I have splenic marginal zone small B cell Lymphoma. I had a splenectomy in July 2017. Before I had a splenectomy my spleen was 15 cm x 8 cm x 20 cm. 3 months after I had my spleen removed I had 4 weeks of rituximab. Am now in remission. I am not sure if this will help you but if you have any questions I will be glad to try and answer them.
Thanks for the reply. It seems the CT scan report is somewhat lacking in details (it only lists the length at 14.6). Seems like there are other dimensions that might also be important.
grecarmar
@grecarmar
@grecarmar
Posts: 14
Joined: Jul 24, 2018
Hello all. I have CLL and thus had a very enlarged spleen because of it. The average spleen is 12-14 CM’s in length and mine had grown to over 21 CM’s in length. This was a very dangerous situation for me as I continued to be active in sports, more specifically cycling and hockey. Even though I’m 62 yrs of age, I really give er. Lolol. I go all out. When I was diagnosed last Sept, I was totally shocked at what could have gone wrong if I had burst or damaged my spleen. It held a lot of blood. If I had been is some type of accident on my bike or was injured playing hockey I would have bled out. I was sure careful with what I was doing after that. I’m also happy to tell you that after 12 shots of chemo my spleen has gone down to 14cms. I had a CT scan and I’m 100%in remission from this horrible disease—- if I can call it that. I’m not a religious person but I do believe in God. I know he was on this journey with me. I can never be cured as its in my bone marrow but at least its in remission. So its blood tests for me every 3 months. I’m ok with that. A buddy told me “at least youre on this side of the grass”!!!!!! Amen to that!!!!’
Sounds like my "enlarged spleen" is a "barely enlarged spleen".
@JustinMcClanahan
Hello @grecarmar. I'd like to invite a few members to this discussion that have discussed enlarged spleens and removal of spleens in addition to having a blood cancer. Although a few of these members had a different type of blood cancer, they may be able to share their experiences with the spleen. @scsimpson, @bordercolliecra, @caroldk, and @shaker1956 all discussed having an enlarged spleen or some sort of spleen issue.
@grecarmar, would you mind sharing, if you are comfortable, what your provider had to say about your enlarged spleen result?