Richter’s Transformation: Group - Cases Hello... - CLL Support

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Richter’s Transformation

Priss69 profile image
22 Replies

Group - Cases

Hello friends.

Yesterday I made Ricther's group and people who have the same disease do not stop entering. I am keeping all cases in archives so that they are registered for medical studies and help other patients.

In the end there are more Ricther than I thought.

facebook.com/groups/1002255...

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Priss69 profile image
Priss69
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22 Replies
johnl profile image
johnl

I don't have Richters, but I do have some of the markers for it. ( CD79b, Notch1, 4-39 ). I would really like to know what to watch out for. For example, can RT occur when blood counts are normal?

john

Priss69 profile image
Priss69 in reply tojohnl

Yes. The Richter is only detected by a scanner. Blood tests can only see your LLC.

Jm954 profile image
Jm954Administrator in reply toPriss69

Not always detected by scanner, although PET is useful.

Other factors will indicate that Richter's has developed. See the two posts I have referenced in reply to johnl

Jackie

Priss69 profile image
Priss69 in reply tojohnl

That is why they are always detected in very advanced states. I was detected by chance. I had a breast cancer and found the Ricther when analyzing the glands.

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer in reply tojohnl

Doctors watch for an elevated LDH count and / or a node that appears suddenly or enlarges suddenly. Not little pop up nodes, but a significant one showing sudden growth.

Priss69 profile image
Priss69 in reply toMsLockYourPosts

They grow at an incredible speed. In a week you can have an orange big on the neck.

Jm954 profile image
Jm954Administrator in reply tojohnl

Check out this post

healthunlocked.com/cllsuppo...

and this

healthunlocked.com/cllsuppo...

Jackie

Priss69 profile image
Priss69 in reply toJm954

Thank you. Can I put this information to the Richter Group?

Jm954 profile image
Jm954Administrator

Priss, I've removed the photo because it looked as though it had the names of individuals on it and they may not have given their consent. If they have please feel free to repost it but we do need to be careful about sharing information between platforms.

Jackie

Priss69 profile image
Priss69 in reply toJm954

I agree with you. Anyway they tell their story with their real name. But I agree with you.

Priss69 profile image
Priss69 in reply toJm954

I didn't realize that detail that names appear.

Jm954 profile image
Jm954Administrator in reply toPriss69

No worries, we're looking out for you!

Jackie

Priss69 profile image
Priss69 in reply toJm954

Thank you.

The idea is to find all the testimonies of Ricther and his treatments. It is not the same to see three Ricther than to see 50 Ricther together.

With the new treatments for CLL, survival is higher, but there is also a higher risk of having a Ricther.

Jm954 profile image
Jm954Administrator in reply toPriss69

Not always, it's highly complex and coincidence and causality are not the same thing. Some people will always be low risk for Richter's and others high risk no matter how long they have CLL but we are only just starting to understand some of these things.

Jackie

Priss69 profile image
Priss69 in reply toJm954

I have a friend Ayose, who both transformed the Ricther in months of being diagnosed. Ours was very aggressive and fast

Priss69 profile image
Priss69 in reply toJm954

What I don't understand is how the doctors didn't realize that I was developing a Ricther. I was in a clinical trial and I had complete analyzes every month and scan exams.

Jm954 profile image
Jm954Administrator in reply toPriss69

I would say you were very lucky it was picked up very early, although not so lucky to have the breast cancer too.

Jackie

Priss69 profile image
Priss69 in reply toJm954

I have two breast cancers on both breasts. The same day they tell me that I am in complete remission of the LLC I find breast tumors. I was on a clinical trial with Ibrutinib and they gave me birth control to see how they acted in my body. I think the answer to the clinical trial was the two breast tumors.

Jm954 profile image
Jm954Administrator in reply toPriss69

You've been so unlucky :(

Priss69 profile image
Priss69 in reply toJm954

the truth is that yes and I also know that I am not the only one who ended up with a breast tumor in the clinical trial

Smakwater profile image
Smakwater

Glad you are doing better and helping others.

Keep up the good work Priss,

JM

Priss69 profile image
Priss69 in reply toSmakwater

I do not want anyone who is going through this, feel alone. We are few but we are not invisible.

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