Still new to this SLL/CLL as I was diagnosed two month ago. Doctor said it is more of SLL than CLL since my CBC counts are within the normal limits. I am on Wait, Watch and Observe with some mildly swollen lymph nodes in the neck and medium ones under armpit. He wants to see me in 6 weeks for another evaluation.
Any advise help?
Egypt, welcome to our community, it is a very friendly, supportive and in a lot of instances very intelligent group of very special people. We are happy to have you join us and as you have questions this is a great place to ask them....lots of experience in the community. You will quickly learn you have a whole lot of people in your corner. All the very best to you!!!
Panz 🙏💕☘️
Hi Egypt58,
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Welcome to the club none of us wanted to join.
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Most of us went through panic for many months after diagnosis, as long as one year or more. So we have several pinned posts for you to read- please find the boxes on this page labeled Pinned Posts and Related Posts. (upper right column on computer screens, scroll way below on tablets and other mobile devices).
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Take a look at the 12 tips- healthunlocked.com/cllsuppo....
Adjusting to a new forum can be confusing, so if you’re still reeling from your diagnosis, just write from your heart and read these tips later. We welcome everyone here, no matter how you express yourself. However, be aware that internet privacy is a major concern, so please make sure you read Section 12b before posting.
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1) Choose your title carefully when you write a new post, so that people can easily see what it’s about. (This is a very busy forum and many people just read what catches their attention at a quick glance)
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3) Complete your profile. If members know your nationality and details of your CLL history, they can respond to you more appropriately. Try to keep it updated as your situation changes. Use this link to access your profile. healthunlocked.com/profile/... You can access the profiles of others too, by clicking on their avatar pictures. Having people’s background information is a big help when replying to them.
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And check out some of the Related Posts like:
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
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Len
Welcome Egypt58. I hope I am friendly and supportive but I make no claims to great intelligence!!
Seriously, this is a great community to belong to despite the fact we would rather not have to and please ask any questions that occur to you. Nobody will ever judge you and we have all been in your position, newly diagnosed and with all those conflicting thoughts and emotions.
Very best wishes.
Sending you wishes for very long watch and wait. As you already know (which is great that your doc explained this) your blood tests might not tell you a whole lot. I would try not to check on your nodes too often - I know it is hard not to. Not every ache and pain you have is going to be related to your SLL but I would keep a list so you can ask your doc at the next appointment.
Re: checking on nodes - a common complaint to doctors is that they hurt. Question, are you poking them - Yes. Stop poking them. That often solves the problem.
Good that your doctor is aware of the two presentations of CLL / SLL. Also good that he is rechecking in 6 weeks. It will give both of you a good baseline as you move forward.
Two good resources for getting familiar with the basics are lls.org - see their CLL specific booklet - and cllsociety.org
Let us know how your recheck goes.
Welcome Egypt! I hope you have a long watch and wait. And when/if treatment time comes, there are some very good treatments now. As for advice, I would suggest you start getting copies of all your lab work. Even if you don't understand the lab results at this point, you will soon enough. Most patients find it useful and important to look at their own numbers and have a copy of their complete record, and not just let the doctor tell you "everything's fine" or not fine.
Hi Egypt
Hello glad you found this community though sorry you needed to. Just want to add my welcome and tell you of the one thing I wished folk had shared with me when I first joined this community.
When you ask for and see a copy of your blood results, progression of your cll is mostly measured by the absolute lymphocytes count ( ALC).
I know this is scary when first diagnosed, but many who reassure newly diagnosed folk will tell you they too were in a terrible state of panic and fear in the beginning. Breathe deep, you are no longer alone you will make friends here who understand and help you cope.
Oh' no don't read google, old information on there that is scary as most is out of date. If you must do check the dates, things have become much better.
Best wishes
Bubnojay
Hello Egypt58
Welcome, best advice I can give you is; "eat healthy and moderate exercise" so you will be ready if or when you require treatment. Doctor told me 90% of dealing with CLL/SLL is positive outlook. CLL/SLL is very treatable. Blessings, your smiley face is a great start!
Welcome Egypt, it is good that you are watch and wait. Enjoy your life and everything in it. I’ve had CLL/SLL since 2002. Welcome to the club! Anna
Great to hear somone who thinks the same as I do. I was diagnosed in 2001. Had fcr in 2010 and now ibrutinib which has worked.
Its hard to tell those who are new to this, not to worry but when you have had cll for all these years, you want them to put it to the back of their minds and enjoy life. Treatment is getting better. I would love to be 20 years younger, haha. Anne uk
You and me both! If I knew than what I know now! I had Bendamustine 9 yrs in, the 3yrs later Imbruvica, now on Venteclax which has been wonderful for me. Stay well & safe. Anna
To AnneHill and Ellieoak - Ladies, thank you for posting. So good to hear from members who have been walking this path for many years now and are still enjoying life. So very encouraging. 💙
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