Good morning, @marynoelle. I know what you mean about having something going on in the back of your mind such as a diagnosis or whatever little bean that got planted which really doesn’t need any tending. And certainly doesn’t warrant encouragement…but it can take root and bloom into thoughts out of our control! 😳 We humans seem to have that knack for always letting our mind wander to the ‘worst case scenario’, which is often just some vague notion and seldom becomes reality! So we end up wasting so much time, energy and peace of mind worrying about nothing!
I found this quote a while ago and I know I’ve shared it with Connect before. There was no author cited but it was impactful.
“Fear does not stop death. It stops life
And worrying does not take away tomorrow’s troubles.
It takes away today’s peace.”
While it’s ok to note you have a condition that may need attention someday, it’s important to not let it define you. IF something progresses and you need treatment, that is the time to deal with it. I know being in active surveillance can feel a bit unsettling. I’m flagged as active surveillance too, even though I am in full remission. But for me it means my doctor is vigilant to catch any potential issues in the future and until IF or WHEN that happens, it’s for him to worry about, not me. ☺️
I read (and saved) an article on Watchful Waiting the other day from Roswell Cancer Center. It gave such a good explanation for why active monitoring and delay of treatment in some cancers such as CLL and lymphoma is the better option! Maybe you’ll appreciate it too. Here’s the link: https://www.roswellpark.org/cancertalk/202501/what-watchful-waiting-lymphoma-or-chronic-leukemia
Not sure where you live, but right now in northern Wisconsin we’re enjoying glorious autumn weather! Enjoy your weekend and no ‘what if’ thoughts allowed. 🥰
Good morning, @marynoelle. I know what you mean about having something going on in the back of your mind such as a diagnosis or whatever little bean that got planted which really doesn’t need any tending. And certainly doesn’t warrant encouragement…but it can take root and bloom into thoughts out of our control! 😳 We humans seem to have that knack for always letting our mind wander to the ‘worst case scenario’, which is often just some vague notion and seldom becomes reality! So we end up wasting so much time, energy and peace of mind worrying about nothing!
I found this quote a while ago and I know I’ve shared it with Connect before. There was no author cited but it was impactful.
“Fear does not stop death. It stops life
And worrying does not take away tomorrow’s troubles.
It takes away today’s peace.”
While it’s ok to note you have a condition that may need attention someday, it’s important to not let it define you. IF something progresses and you need treatment, that is the time to deal with it. I know being in active surveillance can feel a bit unsettling. I’m flagged as active surveillance too, even though I am in full remission. But for me it means my doctor is vigilant to catch any potential issues in the future and until IF or WHEN that happens, it’s for him to worry about, not me. ☺️
I read (and saved) an article on Watchful Waiting the other day from Roswell Cancer Center. It gave such a good explanation for why active monitoring and delay of treatment in some cancers such as CLL and lymphoma is the better option! Maybe you’ll appreciate it too. Here’s the link: https://www.roswellpark.org/cancertalk/202501/what-watchful-waiting-lymphoma-or-chronic-leukemia
Not sure where you live, but right now in northern Wisconsin we’re enjoying glorious autumn weather! Enjoy your weekend and no ‘what if’ thoughts allowed. 🥰
@loribmt
That's a super helpful quote! Thank you!!
You also echo what my mom's doctor told her: "If you are having a health problem, let the doctor worry about it". He was a great doctor and he correctly diagnosed my mom's condition and cured her.
@loribmt
That's a super helpful quote! Thank you!!
You also echo what my mom's doctor told her: "If you are having a health problem, let the doctor worry about it". He was a great doctor and he correctly diagnosed my mom's condition and cured her.
@myoga My transplant doctor told me the same thing…”Let my staff and I do the worrying for you! That’s our job, so you can focus on recovery!” I never lost a moment’s sleep after that.
I’m happy and relieved for you and your mom that her doctor was able to diagnose and successfully treat her health issue! So often we only hear the negative stories, so it’s really refreshing to learn about a successful outcome! If you don’t mind sharing, what was your mom’s diagnosis?
@myoga My transplant doctor told me the same thing…”Let my staff and I do the worrying for you! That’s our job, so you can focus on recovery!” I never lost a moment’s sleep after that.
I’m happy and relieved for you and your mom that her doctor was able to diagnose and successfully treat her health issue! So often we only hear the negative stories, so it’s really refreshing to learn about a successful outcome! If you don’t mind sharing, what was your mom’s diagnosis?
@loribmt
That was along time ago, long before she passed away 15 years ago. If I remember correctly, it had something to do with urinary system. She had gone to a few urologists but they couldn’t find out what was wrong. The doctor said that the tract was clogged up and the problem was common to old women. He didn’t run any tests, just diagnosed from the symptoms right on the first visit. Wonder why other urologists couldn’t figure it out.
Sounds like you had an excellent care team. Would you mind sharing your doctor’s name? My husband was recently diagnosed with CLL. Right now it’s a watch and wait. With my BC and his CLL, we struck a big jackpot! Your advice came at the right time. Thank you!!
@loribmt
That was along time ago, long before she passed away 15 years ago. If I remember correctly, it had something to do with urinary system. She had gone to a few urologists but they couldn’t find out what was wrong. The doctor said that the tract was clogged up and the problem was common to old women. He didn’t run any tests, just diagnosed from the symptoms right on the first visit. Wonder why other urologists couldn’t figure it out.
Sounds like you had an excellent care team. Would you mind sharing your doctor’s name? My husband was recently diagnosed with CLL. Right now it’s a watch and wait. With my BC and his CLL, we struck a big jackpot! Your advice came at the right time. Thank you!!
Good morning, @myoga It sounds like your mom’s doctor was ‘old school’ and zeroed right in with what your mom was experiencing! Like an old mechanic. Just diagnosed the issue ‘by sound’. 😅 That’s what experience can bring to the table!
Thank you. I do have an amazing medical (hematology/oncology/bone marrow transplant team at Mayo-Rochester. There’s a very deep bench of hematology specialists at each Mayo campus. Some clinicians have an area of focus where they specialize so I’m not sure my doctor would be the best fit for your husband. Since your husband was recently diagnosied with CLL, you may want to consider a 2nd option. Here’s a link to Mayo’s home page where you can initiate a request for an appointment. There are 3 campuses, Mayo Rochester, Mayo-Phoenix or Mayo-Jacksonville. You have the option of whichever is more convenient for you. http://mayocl.in/1mtmR63
Wishing both you and your husband all the best with your medical…hm, shall we say, adventures? ☺️
Hi Cliff, I was diagnosed in 2021 with CLL and put on 'watch and wait'. In January of this year, a biopsy of a swollen lymph node found something called 'aCLL' (accelerated or aggressive CLL - though none of the specialists I've spoken to can tell me exactly what it is or what it might mean for my long-term prognosis.) Finding out I had CLL was a shock, but I've had two second opinions from CLL specialists, and learned that every CLL case is different. IMHO it's essential to educate yourself on what the disease is, what your test and genetic numbers indicate as well as what treatment options might be available when and IF you need treatment. Also, find yourself a well-moderated support group! Mine meets monthly on Zoom and speaking to other patients with CLL (some on watch and wait, some in treatment) has helped me deal with uncertainty. I see that Mayo Clinic has mentoring which is great. I found my support group through The CLL Society online, and the site is a good source of general information on the disease, current studies and treatments. I wish everyone on this thread the very best!
Good morning, @myoga It sounds like your mom’s doctor was ‘old school’ and zeroed right in with what your mom was experiencing! Like an old mechanic. Just diagnosed the issue ‘by sound’. 😅 That’s what experience can bring to the table!
Thank you. I do have an amazing medical (hematology/oncology/bone marrow transplant team at Mayo-Rochester. There’s a very deep bench of hematology specialists at each Mayo campus. Some clinicians have an area of focus where they specialize so I’m not sure my doctor would be the best fit for your husband. Since your husband was recently diagnosied with CLL, you may want to consider a 2nd option. Here’s a link to Mayo’s home page where you can initiate a request for an appointment. There are 3 campuses, Mayo Rochester, Mayo-Phoenix or Mayo-Jacksonville. You have the option of whichever is more convenient for you. http://mayocl.in/1mtmR63
Wishing both you and your husband all the best with your medical…hm, shall we say, adventures? ☺️
@loribmt
Thank you for the information! When he's ready for second opinion we'll reach out to the Phenix location since it is the closet.
Wishing you an infinite remission!
Welcome to Connect, | @whatshallido59 |
Your original post in another group mentioned: “I have been diagnosed with cronic lukemia is there any one that has the same.” I thought I’d bring you right over to this CLL (Chronic lymphocytic leukemia) support group so that you could meet up with some of the members who also have CLL.
If you wouldn’t mind sharing a little more about yourself, when were you diagnosed with the Chronic lymphocytic leukemia? What has your hematologist told you about your disease? CLL tends to be a very slowly developing form of leukemia and often patients can go years without any treatment. Are you in a watch and wait period or are you expected to start some treatments?
Hi all--I'm sorry I disappeared for a while after all your helpful comments; I was trying to sort things out and understand what my real situation is. @mrgreentea , you were the first person to respond to my original comment, and it was a game-changer!
I was trying to figure out why my doctor was calling what, according to everything I read (I read so many medical journal articles my brain almost fell out!), is low-count MBL, "CLL stage 0."
I asked my PCP (who referred me) about it, and asked for suggestions for a second opinion. I guess he told her that I'd asked, and she updated her notes to say that it could "possibly be low-count MBL." She still wanted to do the biopsy. (I have no problem getting one, but not if it's not necessary).
I had the feeling that maybe she got kind of triggered about my dx for some reason, and went into "urgency" mode. She told me that I have to be super-careful about infections (I almost never even get colds), and that if I got Covid I'd have to go to the hospital immediately. It just seemed a little over-the-top.
I went to a dermatologist who concluded that my rashes were basically just excema. Then I looked online for images similar to my rashes, and it looked pretty clear that it's atopic dermatitis, which is not generally attributed to CLL. And the bad migrating joint/bone pain I'd been having was getting much better.
Then I started to realize that my symptoms, and some of the weird lab results I got, were more likely to be results of my Celiac--I knew when I originally went to my PCP that I'd accidentally been eating something that's NOT GF for months. (Gluten doesn't immediately trigger symptoms with me--it seems to be a cumulative thing. That's why I didn't realize I was sensitive to it until I was about 50.)
AND I'd had HCV for decades before it was treated and cured in 2018. Looking back at older lab results, I saw that things like my MCV/MCH had been pretty high for years, but had recently gone above the upper limit. And my anemia and low B12 could also be attributed to gluten.
Also, I remembered that, a few years before she died, my mom was told that she had CLL but that it wasn't really a concern. (She died of another kind of cancer.)
Sorry for the long comment. Bottom line is that yes--I do have low-count MBL, but I believe that a lot of what was happening was only tangentially related to that.
So I've been very careful about staying GF, and my rash is almost gone and I no longer have anemia. I told the hematologist that I'd like to wait 3 months, stay GF, drink less alcohol (also a possible cause for some of my issues), and then re-do the labs. If things still look weird on my labs at that point, I may go ahead with the biopsy. It felt good to learn and to advocate for myself--and, again, it was @mrgreentea 's first comment to me that helped me slow down and think things through.
I still don't understand why the hematologist/oncologist was acting as if it was practically a medical emergency. I wonder if she'd go so far as to having me start treatment prematurely.
But thanks so much to everyone who responded to my first comment, and I wish you all the best in your "journeys" with this!
Hi, I’m Kandy. In April 2016 I was diagnosed with CLL, but since then it hasn’t progressed. Now with a blood test taken about two weeks ago, I’m informed that the lymphocyte level is elevated. I’m waiting to hear further. Has anyone else experienced this kind of thing?
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@loribmt Thanks for this information and great advice. I will definitely try to follow it!!
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1 Reaction@loribmt
That's a super helpful quote! Thank you!!
You also echo what my mom's doctor told her: "If you are having a health problem, let the doctor worry about it". He was a great doctor and he correctly diagnosed my mom's condition and cured her.
-
Like -
Helpful -
Hug
1 Reaction@myoga My transplant doctor told me the same thing…”Let my staff and I do the worrying for you! That’s our job, so you can focus on recovery!” I never lost a moment’s sleep after that.
I’m happy and relieved for you and your mom that her doctor was able to diagnose and successfully treat her health issue! So often we only hear the negative stories, so it’s really refreshing to learn about a successful outcome! If you don’t mind sharing, what was your mom’s diagnosis?
@loribmt
That was along time ago, long before she passed away 15 years ago. If I remember correctly, it had something to do with urinary system. She had gone to a few urologists but they couldn’t find out what was wrong. The doctor said that the tract was clogged up and the problem was common to old women. He didn’t run any tests, just diagnosed from the symptoms right on the first visit. Wonder why other urologists couldn’t figure it out.
Sounds like you had an excellent care team. Would you mind sharing your doctor’s name? My husband was recently diagnosed with CLL. Right now it’s a watch and wait. With my BC and his CLL, we struck a big jackpot! Your advice came at the right time. Thank you!!
Good morning, @myoga It sounds like your mom’s doctor was ‘old school’ and zeroed right in with what your mom was experiencing! Like an old mechanic. Just diagnosed the issue ‘by sound’. 😅 That’s what experience can bring to the table!
Thank you. I do have an amazing medical (hematology/oncology/bone marrow transplant team at Mayo-Rochester. There’s a very deep bench of hematology specialists at each Mayo campus. Some clinicians have an area of focus where they specialize so I’m not sure my doctor would be the best fit for your husband. Since your husband was recently diagnosied with CLL, you may want to consider a 2nd option. Here’s a link to Mayo’s home page where you can initiate a request for an appointment. There are 3 campuses, Mayo Rochester, Mayo-Phoenix or Mayo-Jacksonville. You have the option of whichever is more convenient for you.
http://mayocl.in/1mtmR63
Wishing both you and your husband all the best with your medical…hm, shall we say, adventures? ☺️
Hi Cliff, I was diagnosed in 2021 with CLL and put on 'watch and wait'. In January of this year, a biopsy of a swollen lymph node found something called 'aCLL' (accelerated or aggressive CLL - though none of the specialists I've spoken to can tell me exactly what it is or what it might mean for my long-term prognosis.) Finding out I had CLL was a shock, but I've had two second opinions from CLL specialists, and learned that every CLL case is different. IMHO it's essential to educate yourself on what the disease is, what your test and genetic numbers indicate as well as what treatment options might be available when and IF you need treatment. Also, find yourself a well-moderated support group! Mine meets monthly on Zoom and speaking to other patients with CLL (some on watch and wait, some in treatment) has helped me deal with uncertainty. I see that Mayo Clinic has mentoring which is great. I found my support group through The CLL Society online, and the site is a good source of general information on the disease, current studies and treatments. I wish everyone on this thread the very best!
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3 Reactions@loribmt
Thank you for the information! When he's ready for second opinion we'll reach out to the Phenix location since it is the closet.
Wishing you an infinite remission!
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Like -
Helpful -
Hug
1 ReactionWelcome to Connect, | @whatshallido59 |
Your original post in another group mentioned: “I have been diagnosed with cronic lukemia is there any one that has the same.” I thought I’d bring you right over to this CLL (Chronic lymphocytic leukemia) support group so that you could meet up with some of the members who also have CLL.
If you wouldn’t mind sharing a little more about yourself, when were you diagnosed with the Chronic lymphocytic leukemia? What has your hematologist told you about your disease? CLL tends to be a very slowly developing form of leukemia and often patients can go years without any treatment. Are you in a watch and wait period or are you expected to start some treatments?
-
Like -
Helpful -
Hug
3 ReactionsHi all--I'm sorry I disappeared for a while after all your helpful comments; I was trying to sort things out and understand what my real situation is. @mrgreentea , you were the first person to respond to my original comment, and it was a game-changer!
I was trying to figure out why my doctor was calling what, according to everything I read (I read so many medical journal articles my brain almost fell out!), is low-count MBL, "CLL stage 0."
I asked my PCP (who referred me) about it, and asked for suggestions for a second opinion. I guess he told her that I'd asked, and she updated her notes to say that it could "possibly be low-count MBL." She still wanted to do the biopsy. (I have no problem getting one, but not if it's not necessary).
I had the feeling that maybe she got kind of triggered about my dx for some reason, and went into "urgency" mode. She told me that I have to be super-careful about infections (I almost never even get colds), and that if I got Covid I'd have to go to the hospital immediately. It just seemed a little over-the-top.
I went to a dermatologist who concluded that my rashes were basically just excema. Then I looked online for images similar to my rashes, and it looked pretty clear that it's atopic dermatitis, which is not generally attributed to CLL. And the bad migrating joint/bone pain I'd been having was getting much better.
Then I started to realize that my symptoms, and some of the weird lab results I got, were more likely to be results of my Celiac--I knew when I originally went to my PCP that I'd accidentally been eating something that's NOT GF for months. (Gluten doesn't immediately trigger symptoms with me--it seems to be a cumulative thing. That's why I didn't realize I was sensitive to it until I was about 50.)
AND I'd had HCV for decades before it was treated and cured in 2018. Looking back at older lab results, I saw that things like my MCV/MCH had been pretty high for years, but had recently gone above the upper limit. And my anemia and low B12 could also be attributed to gluten.
Also, I remembered that, a few years before she died, my mom was told that she had CLL but that it wasn't really a concern. (She died of another kind of cancer.)
Sorry for the long comment. Bottom line is that yes--I do have low-count MBL, but I believe that a lot of what was happening was only tangentially related to that.
So I've been very careful about staying GF, and my rash is almost gone and I no longer have anemia. I told the hematologist that I'd like to wait 3 months, stay GF, drink less alcohol (also a possible cause for some of my issues), and then re-do the labs. If things still look weird on my labs at that point, I may go ahead with the biopsy. It felt good to learn and to advocate for myself--and, again, it was @mrgreentea 's first comment to me that helped me slow down and think things through.
I still don't understand why the hematologist/oncologist was acting as if it was practically a medical emergency. I wonder if she'd go so far as to having me start treatment prematurely.
But thanks so much to everyone who responded to my first comment, and I wish you all the best in your "journeys" with this!
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Helpful -
Hug
1 ReactionHi, I’m Kandy. In April 2016 I was diagnosed with CLL, but since then it hasn’t progressed. Now with a blood test taken about two weeks ago, I’m informed that the lymphocyte level is elevated. I’m waiting to hear further. Has anyone else experienced this kind of thing?
-
Like -
Helpful -
Hug
1 Reaction