Hi @nana120. An enlarged spleen is a pretty common side effect of CLL. Instead of typing it all out, I found a really good article for you that explains why enlargement happens with conditions like CLL or other blood cancers.
Leukemia Enlarged Spleen: What To Know https://www.patientpower.info/leukemia/enlarged-spleen-leukemia
What does your doctor say about the tear in your spleen leaking blood? Wouldn’t that be considered a ruptured spleen? How was it determined that your spleen has a tear?
I was diagnosed with CLL in 2019 just before covid hit. I had swollen lymph nodes along my collar bone which I thought were just swollen glands. I'd had them quite a while before one seemed to grow a little which made me think I should really have them checked.
After a biopsy, to my great distress it came back as CLL. I was just told not to worry and carry on as normal. This was fine for a while until the worry really got on top of me and I ended up having treatment for my mental health.
I finally pulled my head back together and got a handle on the situation. I'm now 51 and refuse to let this get the better of me again. I see a haematologist every six month's for a full blood check up, but as of yet I receive no treatment or medication, and apart from the same swollen lymph nodes and a lowish white blood cell count, I'm absolutely fine and carry on with life as normal, although now if there's something I want to do I just do it. The CLL has actually given me a new lease on life and my mental health has never been better or my head clearer.
It is definitely scary being told you have Leukaemia, but thankfully CLL is one that can be lived with until old age takes it's toll.
I'm really hoping I can hang around to see my two teenage daughter's have families of their own and I get to enjoy it with them.
I found CLL scary as hell, but I don't have the luxury of curling up into a ball and letting it defeat me. As hard as it can be we just need to keep putting one foot in front of the other and enjoy every minute we're given.
I was diagnosed with CLL in 2019 just before covid hit. I had swollen lymph nodes along my collar bone which I thought were just swollen glands. I'd had them quite a while before one seemed to grow a little which made me think I should really have them checked.
After a biopsy, to my great distress it came back as CLL. I was just told not to worry and carry on as normal. This was fine for a while until the worry really got on top of me and I ended up having treatment for my mental health.
I finally pulled my head back together and got a handle on the situation. I'm now 51 and refuse to let this get the better of me again. I see a haematologist every six month's for a full blood check up, but as of yet I receive no treatment or medication, and apart from the same swollen lymph nodes and a lowish white blood cell count, I'm absolutely fine and carry on with life as normal, although now if there's something I want to do I just do it. The CLL has actually given me a new lease on life and my mental health has never been better or my head clearer.
It is definitely scary being told you have Leukaemia, but thankfully CLL is one that can be lived with until old age takes it's toll.
I'm really hoping I can hang around to see my two teenage daughter's have families of their own and I get to enjoy it with them.
I found CLL scary as hell, but I don't have the luxury of curling up into a ball and letting it defeat me. As hard as it can be we just need to keep putting one foot in front of the other and enjoy every minute we're given.
Hi @johnwhitley, I want to officially welcome you to Connect. It looks like you’ve been a member for a couple of years already but this is your first time posting!
This was such an uplifting reply showing how your positivity and take charge attitude has shaped your future! This comment…wow! “ The CLL has actually given me a new lease on life and my mental health has never been better or my head clearer.”
Your words will offer encouragement to so many others who have CLL and need a morale boost! Will you consider being a regular visitor to the forum? ☺️
Hi @nana120. An enlarged spleen is a pretty common side effect of CLL. Instead of typing it all out, I found a really good article for you that explains why enlargement happens with conditions like CLL or other blood cancers.
Leukemia Enlarged Spleen: What To Know https://www.patientpower.info/leukemia/enlarged-spleen-leukemia
What does your doctor say about the tear in your spleen leaking blood? Wouldn’t that be considered a ruptured spleen? How was it determined that your spleen has a tear?
Lori, this is actually happing to my son who has CLL, also. The doctor watching hemoglobin getting lower and almost sent him to the OR for removal of the spleen until his son, an endocrinology surgeon, halted it! It is currently being watched. I suppose I passed the CLL to him 😩!
Hi @johnwhitley, I want to officially welcome you to Connect. It looks like you’ve been a member for a couple of years already but this is your first time posting!
This was such an uplifting reply showing how your positivity and take charge attitude has shaped your future! This comment…wow! “ The CLL has actually given me a new lease on life and my mental health has never been better or my head clearer.”
Your words will offer encouragement to so many others who have CLL and need a morale boost! Will you consider being a regular visitor to the forum? ☺️
Thankyou for your kind word's. I do visit the site daily just to see if
there are any posts regarding CLL. I'll try to be a bit more interactive
with the group xxx
Lori, this is actually happing to my son who has CLL, also. The doctor watching hemoglobin getting lower and almost sent him to the OR for removal of the spleen until his son, an endocrinology surgeon, halted it! It is currently being watched. I suppose I passed the CLL to him 😩!
Good morning, @nana120. As a blood cancer patient myself and as a mother, I worry about the same thing you are…that we could pass this along to our children. I had AML, which I learned is not a directly inherited blood cancer, nor is CLL. While some genetic mutations can be identified or associated with blood cancers they’re not directly inherited in a straightforward manner. Most cases are random…with genetic mutations that we acquire with age. Le sigh…
Since your son’s splenectomy was halted, is he on any medication to reduce the swelling of his spleen?
Good morning, @nana120. As a blood cancer patient myself and as a mother, I worry about the same thing you are…that we could pass this along to our children. I had AML, which I learned is not a directly inherited blood cancer, nor is CLL. While some genetic mutations can be identified or associated with blood cancers they’re not directly inherited in a straightforward manner. Most cases are random…with genetic mutations that we acquire with age. Le sigh…
Since your son’s splenectomy was halted, is he on any medication to reduce the swelling of his spleen?
Lori, The spleen issue was discovered during every test known to man (hepatitis, encephalitis & meningitis) since he was delirious and semi conscious when he was admitted. After a week in hospital I think the infectious disease lab has narrowed it down to a tick bite infection (not Lyme). He has been on IV doxycycline until he was released yesterday! I’m not sure what is happening going forward, but the infectious disease physician said he may order additional medication. BTW, I’m 1,100 miles from him & Facetime was great during his release yesterday! ❤️
Good morning, @nana120. As a blood cancer patient myself and as a mother, I worry about the same thing you are…that we could pass this along to our children. I had AML, which I learned is not a directly inherited blood cancer, nor is CLL. While some genetic mutations can be identified or associated with blood cancers they’re not directly inherited in a straightforward manner. Most cases are random…with genetic mutations that we acquire with age. Le sigh…
Since your son’s splenectomy was halted, is he on any medication to reduce the swelling of his spleen?
I have my first second opinion @Mayo Tuesday.
I had lots of questions After my 1st diagnosis I was not satisfied with my Doctor's Answers to some of my questions. So I requested 1⁄2 opinion and was pleased to hear from mayo. There are lots of treatments from what I understand and improvements and hopeI am anxiously . I am anxiously awaiting my appointment.
Hi @susue! Thought I’d drop in to see if you learned anything new from your appointment with Mayo hematology. From my own experience with the team from Mayo Rochester, I’m expecting your doctor took their time to listen and to answer your questions. ☺️ Were you able to get a firm diagnosis?
Good morning. Well maybe a coincidence but both of my grandfathers had leukemia and died from it and I do not have any information as to what kind of leukemia, nor do I know if they distinguished the differences back then.
I was diagnosed in December 2021 with cll, started treatment in April 2024. Now my brother in Australia who is 61 has been diagnosed.
So, is it genetic? It does make me worry for my children.
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Hi @nana120. An enlarged spleen is a pretty common side effect of CLL. Instead of typing it all out, I found a really good article for you that explains why enlargement happens with conditions like CLL or other blood cancers.
Leukemia Enlarged Spleen: What To Know
https://www.patientpower.info/leukemia/enlarged-spleen-leukemia
What does your doctor say about the tear in your spleen leaking blood? Wouldn’t that be considered a ruptured spleen? How was it determined that your spleen has a tear?
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2 ReactionsI was diagnosed with CLL in 2019 just before covid hit. I had swollen lymph nodes along my collar bone which I thought were just swollen glands. I'd had them quite a while before one seemed to grow a little which made me think I should really have them checked.
After a biopsy, to my great distress it came back as CLL. I was just told not to worry and carry on as normal. This was fine for a while until the worry really got on top of me and I ended up having treatment for my mental health.
I finally pulled my head back together and got a handle on the situation. I'm now 51 and refuse to let this get the better of me again. I see a haematologist every six month's for a full blood check up, but as of yet I receive no treatment or medication, and apart from the same swollen lymph nodes and a lowish white blood cell count, I'm absolutely fine and carry on with life as normal, although now if there's something I want to do I just do it. The CLL has actually given me a new lease on life and my mental health has never been better or my head clearer.
It is definitely scary being told you have Leukaemia, but thankfully CLL is one that can be lived with until old age takes it's toll.
I'm really hoping I can hang around to see my two teenage daughter's have families of their own and I get to enjoy it with them.
I found CLL scary as hell, but I don't have the luxury of curling up into a ball and letting it defeat me. As hard as it can be we just need to keep putting one foot in front of the other and enjoy every minute we're given.
-
Like -
Helpful -
Hug
5 ReactionsHi @johnwhitley, I want to officially welcome you to Connect. It looks like you’ve been a member for a couple of years already but this is your first time posting!
This was such an uplifting reply showing how your positivity and take charge attitude has shaped your future! This comment…wow! “ The CLL has actually given me a new lease on life and my mental health has never been better or my head clearer.”
Your words will offer encouragement to so many others who have CLL and need a morale boost! Will you consider being a regular visitor to the forum? ☺️
-
Like -
Helpful -
Hug
2 ReactionsLori, this is actually happing to my son who has CLL, also. The doctor watching hemoglobin getting lower and almost sent him to the OR for removal of the spleen until his son, an endocrinology surgeon, halted it! It is currently being watched. I suppose I passed the CLL to him 😩!
Thankyou for your kind word's. I do visit the site daily just to see if
there are any posts regarding CLL. I'll try to be a bit more interactive
with the group xxx
-
Like -
Helpful -
Hug
1 ReactionGood morning, @nana120. As a blood cancer patient myself and as a mother, I worry about the same thing you are…that we could pass this along to our children. I had AML, which I learned is not a directly inherited blood cancer, nor is CLL. While some genetic mutations can be identified or associated with blood cancers they’re not directly inherited in a straightforward manner. Most cases are random…with genetic mutations that we acquire with age. Le sigh…
Since your son’s splenectomy was halted, is he on any medication to reduce the swelling of his spleen?
-
Like -
Helpful -
Hug
1 ReactionLori, The spleen issue was discovered during every test known to man (hepatitis, encephalitis & meningitis) since he was delirious and semi conscious when he was admitted. After a week in hospital I think the infectious disease lab has narrowed it down to a tick bite infection (not Lyme). He has been on IV doxycycline until he was released yesterday! I’m not sure what is happening going forward, but the infectious disease physician said he may order additional medication. BTW, I’m 1,100 miles from him & Facetime was great during his release yesterday! ❤️
-
Like -
Helpful -
Hug
4 ReactionsTo my knowledge CLL is not inherited
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2 ReactionsHi @susue! Thought I’d drop in to see if you learned anything new from your appointment with Mayo hematology. From my own experience with the team from Mayo Rochester, I’m expecting your doctor took their time to listen and to answer your questions. ☺️ Were you able to get a firm diagnosis?
-
Like -
Helpful -
Hug
1 ReactionGood morning. Well maybe a coincidence but both of my grandfathers had leukemia and died from it and I do not have any information as to what kind of leukemia, nor do I know if they distinguished the differences back then.
I was diagnosed in December 2021 with cll, started treatment in April 2024. Now my brother in Australia who is 61 has been diagnosed.
So, is it genetic? It does make me worry for my children.