Just knowing that I have cancer in my lymph nodes, my bone marrrow and my blood (CLL) scares the fool out of me! That all over my body from head to toe! So scary; I have non-hodgekins Lymphoma and don’t know the difference between that and CLL. Any one know the difference, I’m confused.
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CLL is a type of Non-Hodgkin Lymphoma. cancer.org/cancer/non-hodgk...
CLL is a type of leukaemia and SLL is a lymphoma
CLL & SLL are considered different expressions of same disease by most doctors, and as such are BOTH classified as a type of Non-Hodgkin Lymphoma, as specified in the link I shared on my first post from American Cancer Society, Have a look, Lola: cancer.org/cancer/non-hodgk...
I understand but depending on the literature CLL is a form of leukaemia and a lymphoma at the same time. CLL is more present in blood and bone marrow while SLL is mainly focused in the lymph nodes. I should know as I have SLL.. 
Oh my, hope all goes well and you feel good.
Mimi
Me? I am doing well thx still working 
👍🏻
The point is, Lola: CLL/SLL is a type of Non-Hodgkin Lymphoma. It isn't really useful to keep disputing that fact here. It may confuse other people. But yes, the CLL expression is more present in marrow/blood, and SLL expression in lymph nodes. Good luck with your SLL.
Thanks!
Your right! SLL has a better prognosis from what I have read.
M
Does SLL have a better prognosis?? still depends on deletions and mutations.
I know it's worrisome. But try not to let fear get the best of you Mimi4times. Treatments are very good these days. In most cases CLL can be managed and life goes on as normal (more or less). Good luck!
Thank you so much! Really worried that treatments will make me so nauseated!
Don't worry about things like that. Many treatments today for CLL aren't even chemo. They are newer drugs. Nausea probably will not even be an issue. What stage are you? Are your doctors starting to discuss treatment? Or are you still in Watch & wait?
Stage II . Feeling nausea more and not on any treatment- he says I am stable with blood work and stable with my cat scans.
Good that you're stable and just stage 2. Possible to stay that way a very long time! Nausea could be so many things including CLL but possibly other causes. Stress makes me very queasy and off my food. Good luck to you.
Hi, sounds as though you may have Follicular Non Hodgkin Lymphoma (FL) which can behave similarly to Small Lymphocytic Lymphoma, a variant of CLL.
Watch and wait is common in FL, lots of good treatments for that too and could be years before you need any so try not to worry too much.
Thanks for your reply. No, he clearly stated it was CLL. Curious, why common to W & W in the state of FL? My oncologist assured me that if you started chemo too early that it may do more harm then good. In other words; it won’t Be as effected unless your white count justifies the need.
My mother and two brothers also died of CLL.
My other wad 75 when she passed, my oldest brother was 75 when he passed and my 3 rd brother was 66 when he passed; same age as I
Currently.
Mimi
Hi Mimi,
if he said it was CLL then I'm sure that's what it is. CLL can be regarded as a NHL and he was right about starting treatment too soon.
I hope all goes well for you
Oh thank you so much for your input!!!
I appreciate eveyone’s Kindness so much!!
Mimi
There is a study going on where people start treatment ASAP. I was one of these people and I am post 5 years diagnoses.. if your nodes are big then you start treatment regardless if blood is fine. My blood was perfect but massive neck swelling but all under control now.
My lymph nodes are enlarged through out my body. Oncologist said early treatment would not be very effective.
Each case is diff. my neck nodes were affecting my sinuses ,ears and respiratory system. They had to shrink them ASAP.
Stay calm, keep busy. Try not to let the mind stay in neutral. Keep it in drive and high gear. I know you can not forget about the CLL but try not to live and breath it. That is when the dark comes. When we just dwell on it. We have so much light out there in the form of so many new treatments that are here now and so many more to come. And as for side-effects- do not burn your mind on something that very well may never happen. Try to stay positive and active. Become involve. Become you AGAIN. STAY STRONG- A CURE IS COMING SOONER THAN LATER. J.R.
I felt the same way when I was first diagnosed. I also kept thinking it’s the only cancer that is never curable. I put my mind & body in a get fit mode so I would be stronger to fight it. Then I started thinking on W&W it can be a long time before I need treatment and in that time a wonderful new treatment can be discovered. I am 68, working full time in a Pre-school autistic classroom. I am more fit then ever. My sister 3 years older was diagnosed 10 years ago. She had one chemo treatment and is back on W&W. Deep breaths and think good thoughts.
WOW! Very positive, thank you for your encouraging words! I have no energy to stay fit🤣.
Stay well!!!
Mimi
Hi I understand your worries. You are focusing on the worst case scenarios which does not help. As others have said you still have your life ahead of you. You may never need treatment 30% of people don’t. If you do many of the treatments are not chemo and are very effective.
Try to stay positive and educate yourself. This is what I did through this website and it helped.
I will be starting a non chemo targeted treatment this week and of course I am apprehensive who wouldn’t be. But I have a lot of knowledge and a lot of hope that will see me through. All gained from this site.
There are others on this site who have or are currently walking the same path as me. Their posts are posite and reassuring to me.
You are on the right site for support education advice and reassurance. Stay strong you will adjust and come to terms with your diagnosis in time. If this is not enough for you talk to your specialist and GP they can help.
Good luck
Ann
Thank you! I need to try and focus on the positive. When my husband left me the same time I was diagnosed, I just turned to putty. Not very strong emotionally .
Mimi
Hi Mimi sorry to hear this. Of course you will not feel strong at the moment you are grieving not only for the loss of your health but the loss of your husband. One of these events alone would make anyone feel as you do.
I have had multiple loss in my life in the past when I was much younger I know how it feels overwhelming. It may help to discuss this with your GP and your specialist.
Your psychological well-being is as important as your physical well-being and the two interact.
You may benefit from some professional emotional support I sought this when I was diagnosed despite having friends and family whom were supportive.
You will see from my profile I am a retired psychologist. I chose to practice what I preached and it did help me to emotionally process my loss.
Keep in touch
Good luck and god bless
Ann
Oh my, yes MAYO had me going to counseling there since Diagnosed and my husband leaving. I have turned the corner but not yet divorce ! Waiting on ! But took up obsessing with the CLL!
Mercy, I do hope I can get on with my life soon. Thank you again.
Mimi
start a daily fitness routine of some sort. it gives you goals to focus on. i recently started weight-lifting to improve bone density. keeps the mind (and body!) busy in a positive way - always trying to squeeze off more reps or increase the weight... Celebrating when I surpass a personal goal and move on to next level. But you could do same with jogging, swimming, tai chi, pilates, yoga. So long as there are stages to reach and surpass so you can measure your progress. it becomes a game, a challenge. Daily exercise is a good endorphin release, which improves mood and calms anxiety/stress.
Oh yes, heard this from all the docs ! I’m 66 and have little to no energy . Moving back to GA end of month. Going to try and walk in enclosed cool mall.
Mimi
Husband left you at same time you were diagnosed? U may wanna join my FB group on Narcissist..
Hello Mimi! CLL is chronic lymphocytic leukaemia. Note the word chronic which means it’s usualky an indolent type of leukaemia unlike the childhood ALL.. hope this helps
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