Up to date info

Posted by cal1960 @cal1960, Mar 28 2:42pm

Most of these post are older. How do I get the most up to date posts?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Lori, Volunteer Mentor | @loribmt | Mar 28 3:48pm

Hi @cal1960, While some of the posts are older, many are still very relevant, active and current.
You can see the most recent responses to comments by using the oval button directly under the discussion where it says Oldest to Newest. Click there. You’ll see a drop down menu with the option to reverse the order from newest to oldest, see the most replied to comments or the comments with the most reactions.

By the way, welcome to Connect. Since you’re making your first entry in the Blood Cancers & Disorders support group, have you been diagnosed with a blood cancer?

schree | @schree | Mar 29 11:37am

In reply to @loribmt "Hi @cal1960, While some of the posts are older, many are still very relevant, active and..." + (show)

Yes , I have ET

Lori, Volunteer Mentor | @loribmt | Mar 29 3:18pm

In reply to @schree "Yes , I have ET" + (show)

Hi @shree, I know you are concerned that most of the discussions you’ve found on ET are older. The date on the initial posting of the new discussion might be dated, but as I mentioned before, many conversations are quite active. It’s nice to keep the threads ongoing so that there aren’t so many new discussions repeating the same information.

Now that I know you have ET, I’ve taken the liberty of pulling some of the more recent discussions for you. You can pick and choose:

Essential Thrombocythemia: Making treatment decisions with @mamsgirl1998 @0612judy @debhammel and fellow ET members
https://connect.mayoclinic.org/discussion/essential-thrombocythemia-4/
~~~
~Need help-newly diagnosed with a high platelet count and the JAK2 gene! With members @nohrt4me @janemc @eileen11108 @lindagualtieri and many others.
https://connect.mayoclinic.org/discussion/need-help-newly-diagnosed-with-a-high-platelet-count-and-the-jak2-gene/
~~
Particularly helpful this comment by @nohrt4me with suggestions questions to ask a MPN specialist if you’re newly diagnosed with ET. https://connect.mayoclinic.org/comment/1146120/

A few more links with informative replies:
How to manage the side effects of hydroxyurea https://connect.mayoclinic.org/discussion/side-effects-of-hydroxyurea-et/

Would you might sharing a little more about yourself? Are you currently taking any medication such as Hydroxurea to control the platelet level? Were you told about any specific genetic mutation such as JAK2 or CALR which is behind your ET?

cal1960 | @cal1960 | Mar 29 3:59pm

In reply to @loribmt "Hi @shree, I know you are concerned that most of the discussions you’ve found on ET..." + (show)

I have recently been diagnosed with CLL and would really like to see posts on that and any info I can get. Thank you

cal1960 | @cal1960 | Mar 29 4:07pm

In reply to @loribmt "Hi @shree, I know you are concerned that most of the discussions you’ve found on ET..." + (show)

Hello I have just been diagnosed with CLL and would like to see posy on that topic please. I need positive reinforcement and mor information. Thank you

janemc | @janemc | Mar 29 4:08pm

In reply to @cal1960 "I have recently been diagnosed with CLL and would really like to see posts on that..." + (show)

Hello, cal1960. You can enter CLL in the search box at the top of this page to see helpful posts.

Lori's explanation is universally true. While some posts started years ago, they are still active. When we're newly diagnosed, it's worth reading back through these discussions, because we can learn from others' experiences and comments.

schree | @schree | Mar 29 4:31pm

In reply to @loribmt "Hi @shree, I know you are concerned that most of the discussions you’ve found on ET..." + (show)

Yes , I am taking Hydroxurea & 81 aspirin & yes I was told about JAK2

Lori, Volunteer Mentor | @loribmt | Mar 29 5:47pm

In reply to @schree "Yes , I am taking Hydroxurea & 81 aspirin & yes I was told about JAK2" + (show)

Ok, if you have the JAK2 mutation and taking HU, the links I provided above should be very helpful and informative for you. Feel free to jump into any conversation to ask questions. How long ago were you diagnosed?

bettersleep68 | @bettersleep68 | Mar 29 6:25pm

In reply to @loribmt "Hi @cal1960, While some of the posts are older, many are still very relevant, active and..." + (show)

Lori. Hey there ..what will happen if my bone biopsy is not good..I am scared it won't show any improvement

Lori, Volunteer Mentor | @loribmt | Mar 29 7:40pm

In reply to @cal1960 "Hello I have just been diagnosed with CLL and would like to see posy on that..." + (show)

Welcome to Connect, @cal1960 Chronic lymphocytic leukemia (CLL) is a form of non Hodgkin’s lymphoma, generally slow to develop and not uncommon for treatment to be delayed. I know, just hearing the word leukemia can be frighting. But the good news is that CLL, statistically, remains one of the more treatable types of leukemia.

You’re looking for positive reinforcement! ☺️ This post by @gardeningjunkie is one of the most encouraging stories of CLL. She was diagnosed with CLL over a decade ago and with no treatment, the disease has spontaneously regressed! Here’s her story:
https://connect.mayoclinic.org/discussion/cll-spontaneous-regression/
~~~

As @janemc suggested in her reply to you, more discussions can be found by simply typing in CLL in the top search bar.
To get you started, I’m posting some links below for you to read through. I think you’ll find them informational.

However, remember that each of us has our own, unique story. You may all be sharing the same diagnosis, but there can be differences in treatments, when to treat and response to treatments, etc. But the replies and the article links in the comments will give you a better understanding of CLL.

Here are the links to replies or discussions:
~Diagnosed with asymptomatic CLL 6 years ago; Starting to have symptoms. With member, @tatayababa and others.
https://connect.mayoclinic.org/comment/815368/
~~~~
~Non Hodgkin's Lymphoma- Watch & Wait Approach
https://connect.mayoclinic.org/comment/1042622/
~~
Another discussion:
Just discovered I have leukemia:
https://connect.mayoclinic.org/comment/1043133/
~~
One more…this discussion with @joeeduffy whose husband was diagnosed with CLL a few years go.
https://connect.mayoclinic.org/comment/1007740/
Feel free to pop into any of the conversations and ask questions! Are you in active surveillance or has your doctor suggested treatment?

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