I recently had a blood test performed by my primary and came back with the possibility of cll. I am beside myself. Went to see a Oncologist /Hematologist and he will be doing his own blood work to confirm. He did review the blood work from primary and he is saying he is pretty sure it is cll. I have been feeling sick (nausea) and no appetite. What a toll this is taking on my system.
I am so glad I found this website. Already I feel calmer.
I will be posting after my blood work and I see the Dr.
Thanks to all of you.
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scrapbook
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Welcome. You can take a breath, relax some....even if you do have CLL not much will change in your life. You won't die in a week or even a year. You have years and years, maybe even over a decade before any treatment will begin. Then even more time before the next one.
There is much to learn but plenty of time to learn it. Don't let it interfere with your regular old life anymore than absolutely possible.
I was very scared and not knowing too much about cll thinking the worst. I am a 65 yy and lost my husband 2 years ago and feeling that I will be going thru this by myself.
You are among friends. We all have found ourselves on this path and most initially feel a combination of shock and despair. Better days are ahead! It may take awhile but you will find that this diagnosis often has a minimal impact on your life, and others have paved the way for most situations. Be gentle with yourself and allow yourself time to adjust to this new normal. You’re going to be OK.
Welcome to the site. Cll isn’t the sentence that you associate with most cancers, you should take a breath as Scott says and just wait until you get your results. One good thing to take away from this site is you’ll meet lots of good people and potential friends in the future who are always on hand to offer a shoulder or great advice.
Although your scared at the moment anxiety is the one thing you need to try and eliminate, your most likely going to live your life to the full but you’ll just need to make a few adjustments.
Look at Cll as more like diabetes as its tending to get treated that way now with a handful of tablets a day rather than older harsher therapies.
Advancements in Cll far exceed other cancers so that’s a good point to take away and once things settle and you’ve spoken to more people on the site you’ll soon feel more comfortable.
What I’d suggest firstly is to have a few days away with friends or family and forget about it until your results are thru and there’s even a chance you may never need treatment.
I’m relatively young and I’ve had my first treatment days after being diagnosed,and take one of the newer targeted therapies! and now other than taking a few capsules in the morning and few minor symptoms don’t pay much attention to it.
Take your time ask a question a day on the site and when your results are thru you can discuss them with people on here and see what would be your best options moving forward.
You sound totally normal for this stage. Waiting for definite diagnosis was one of the most difficult things in my life so far. Once you 'know' you can begin to decide how you build the fact into your approach to how you are going to live your life from here on - and I do stress the live. For many people it can make minimal difference for a long time - I hope you veer to that end of the spectrum. Take good care of you.
I'm in the exact same situation as you. I've been to hematologist/oncologist 2 times. The first time he took blood ( I hate needles ) and the second time he said the results of my flow cytometry showed abnormal B cells but not enough information so now he has ordered a bone marrow biopsy and CT scan with Contrast, which is scheduled for next Tuesday. Like you, I am beside myself. Again, I HATE needles. I get a cold sweat and nauseous and I have made myself SICK at the thought of this bone marrow biopsy. I just found this site today. Please do keep us posted and I will do the same. Knowledge is power.
If this is your real name, you might like to change it to something more anonymous to protect your privacy when replying to unlocked posts: support.healthunlocked.com/...
AussieNeil I’m not using my real name here. I joined this site to get information and support during a very scary health situation. I never expected my first interaction on here to be a mini-lecture about my username??? Is this a place of support or not?? I’m very scared right now and no I’m not using my real name. I’m trying to get some information about chronic lymphocytic leukemia that my oncologist thinks I have!! Should I just go away and find another site to join?? I’m confused as to why my username is a problem here???
in reply to
Hi Tabitha
Neil didn’t mean any harm by his post he was just trying to protect you as unlocked posts don’t receive as much attention by members and are also visible on google meaning anybody has access to your name and personal information.
Welcome to the group. Have you recently been diagnosed??
Stuart
in reply to
Lewis, how can I tell if my posts are locked or unlocked?? Yes initial diagnosis 2 weeks ago. Scheduled for bone marrow biopsy next week and scared to pieces.
in reply to
Hi sorry to hear your going thru a bad time but your in the right place for support and excellent knowledge.
The post you commented on was written by somebody who hadn’t locked it so it wasn’t anything you were doing wrong. When people make a post there’s an option at the bottom of the screen to lock the post to the community. Members on the site are very wary about any of their or others private information being used or seen by people searching google.
In the beginning is a very scary time and I dreaded my first bone marrow biopsy but it wasn’t anywhere near as bad as I expected.
The best thing you can do is to start a private post of your own just introducing yourself and a little bit about where you are in terms of being diagnosed and how your feeling and you’ll get a large response by some very helpful and caring people and you can potentially make some long term friends, just remember to lock your post at the bottom before you post it.
I see the username you used before wasn’t your real name so your fine to use that and as Newdawn explained about the administrators is they have to make you aware of certain situations with the site but sometimes it may come across as insensitive but it definitely wasn’t intended that way.
Everyone is welcome.
I explained to another member recently regarding this blood disorder that it isn’t the sentence most people associate with other cancers and the progress in therapies for Cll far supersedes that of other cancers, I’m relatively young and like you got diagnosed, blood transfusion, bmb the straight to treatment. I can fully sympathise with where you are at the moment as your heads probably spinning with fear and suddenly being rushed for procedures and potentially discussing treatment.
The bone marrow biopsy is taken to see if the disorder has affected your marrow which it doesn’t always and to do a bit deeper investigation, there’s a possible chance you may never need treatment and just live your full life with it and if you ever do, there are many new targeted therapies like the one I’m taking which are a few capsules a day and as long as you tolerate them you just get on living your life.
Did you have any symptoms prior to being diagnosed or was it just a random blood test??
It’s probably better not to google Cll as all the information is outdated now and things have advanced ten fold since those articles were written.
Stuart
in reply to
Whoa, Tabitha. AssuieNeil is likely one of the most helpful, nicest people you will ever meet. All he did was suggest this post is unlocked and thus viewable by pretty much everyone and let you know if your user name was your real name it would end up on Google.
Also, some members have not told family or their work, so protecting your privacy is what AussieNeil is doing for all of us.....I was a "newbie" too, and was corrected by an administrator---and just learned how to do it properly. ( I needed to read the rules and guidelines more thoroughly, because I posted something political and it is not the appropriate place for that) ....try not to be too scared. My husband went under "conscious sedation" and did not feel anything on his second biopsy. Perhaps that would help if you mentioned your fear to your doctor. Best wishes and hugs to you.
It sounds like we have a few things in common. Nauseous and I also making myself sick. I see dr Tuesday I guess for the actual diagnosis after having blood work. I think for me it is not knowning the unknown- scary! It is really hard not to think about it but working hard not to. You r right knowledge is power. Take care
After 5 1/2 years since diagnosis I have realised that this is a slow progressing cancer so please take some time to read and reach out to others.
This forum is wonderful and you will find that there is so much support, information and understanding. No one really wants to be a member of the group however there will always be someone who can help you with things that may concern or confuse you.
You have already been offered very good advice so please take comfort in the fact that you have a whole network of caring and interested people.
Advances in treatment are being discovered on a regular basis and the future looks better than ever before.
Take good care of your and don't be afraid to reach out. 👫👫👫👫
You’ve been through a lot and will be able to cope with this too!
This site is awesome because the people here really care and understand . People here are very knowledgeable about CLL and also quite experienced in managing the symptoms .... Most important , this is a safe place to come, to vent and then continue with the regular and enjoyable parts of your life.
Wow, I am sorry you have to go through this. As others have said, many of us experienced that panic and overwhelming feeling at the beginning. If the diagnosis does turn out to be CLL, spending time here with a wonderful group of understanding friends will go a long way to getting past the panic and learning about the new and helpful research and medicines that are now -- or soon will be -- available.
Welcome to the group, Scrapbook. I was in your position in March. Diagnosed with early CLL-Watch & Wait... Shocked and feeling uncertain with the future. My specialist advised me to eat healthy,get plenty of exercise, and try not to worry. Im trying to focus on that. Learning about our illness has helped as well as joining this group. Best wishes on your journey.
Welcome to the group. One thing my doc told me , if you are going to have cancer , this is the one you want. It is the most researched cancer and there are many great drugs to treat it and more coming down the road. But the good news is it may be years before you need any thing other than for your doc to keep and eye on it.
We have all been where you are and know what you are feeling and going through. Whenever you have any questions or just a need for support and inspiration, this is the place to be! Keep us updated on any news.Paula
Take a deep breath and let it out. Repeat. This group will help you over hurdles with advice from a road already traversed, hold your hand, and hold you up should you need it. Sounds like you've already got a plan in place with more testing and a hematologist.
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