Just diagnosed with CLL.

[Mamawof25]

Well today I was diagnosed with CLL. I did have to have two iron transfusions. Still waiting on my biopsies. Here to learn all I can.

[Newdawn Administrator]

Welcome Tonia and it’s brave of you to join us on the day of your diagnosis so well done and hope you’re coping ok.

Can you tell us a little more. What led to your diagnosis and what have you had biopsied? It sounds like you have serious anaemia if you’ve needed iron infusions.

People will be along to welcome and help you but please tell us a little more about yourself if you can so we can give you advice more appropriate to you.

Best wishes,

Newdawn

[Mamawof25 in reply to Newdawn]

I had stomach and back pain last month. My doctor did blood work and found I had high liver enzymes. They sent me to the ER for a work over. They did a CT scan and daw enlarged lymph nodes. So they biopsies those 6 days ago. I had a pet scan yesterday. I was diagnosed today by my blood work with CLL.

[SeparatedDMC60 in reply to Mamawof25]

WELCOME. ...

hope your visit was with a hemoglobin /oncologist specialist on CLL....?

WHEN I was diagnosed in 2013..my iron was a 3 and he wanted me to hav iron infusion but I talked him into me go n home and taking strongest iron pills 2 daily. .plus lots of green leafy greens..within month my iron #11...he was soo surprised. .it helped not working at the time...rest and slept alot...

[Spacee]

Welcome too, Tonia! You really jumped in with both feet! Talking about the 2 iron infusions. Hope you are feeling better from that. There are a LOT of new ppl here. Lots of women, surprisingly. I joined for my hubby since he doesn’t “talk” about medical things. He is 70yo and is on wait and watch. Diagnosed about 6/17 but looking at his labs, they started being off back in 12/14. A good CLL doc is essential. Hope you have one!

Linda (Spacee)

[hsouter in reply to Spacee]

Hello, Spacee,

I have joined because my husbance who has SLL/CLL isn’t a joiner/talker either. Lol! Glad to know another caregiver on here....

Our journey has just begun too.... Seeing the oncologist for the first time today. Anxious to hear what he has to say but glad that we were able to get in earlier than expected due to a cancellation....

[Unknown-Unwanted]

Hi Tonia,

Welcome! I was diagnosed at 40, 3 Yrs ago and on Watch & Wait. You have come to the right place for help / support and advice. The people on this forum are nothing short of hero’s with unbelievable knowledge that will take you forward. All I can say is there have been excellent advances in medicine including non chemo’ if you was worried and looking for solutions. However it is said 33% of those diagnosed don’t require any treatment and this ‘Chronic’ condition, but it is very much an individual thing.

Try not to ‘Google’ for answers, you will become more worried and confused which I found out. This fouum is the best place I found.

I hope the above you find useful and reassuring during this difficult time.

Kindest Regards

[Cjmc12]

i am THE GOOGLER

I have slowly put together some understanding, by reading a lot of studies.

I have an incurably miserable disease called curiosity. While in Google you can wiki it.

On the library shelf it is right between "this is not a recent scientific study" and "Capsized Little Leprechauns - causing havoc and mayhem"

[MsLockYourPosts Passed Volunteer]

My first response was to google. Everything said I'd be dead in 5 years. That was 15 years ago. A good resource is cllsociety.org - good basic information and links to other reliable, CLL specific resources. The LLS booklet or The Basics on the Society page, and the videos done by Dr. Susan LeClair on patient power about understanding your labs are good places to start. Stick with the basics until you know more about your specific CLL. Now is the time to establish yourself with a good CLL specialist.

[cook4650 in reply to MsLockYourPosts]

Google is fine, but be CAREFUL!! Only take most of your online info from the large and reputable sites like the American Cancer Association, Leukemia & Lymphoma Society, and the like. Stay away from most of the alternative sites that promise "cures" via essential oils, herbs, and vitamin supplements. Notice that I put the word cures in quotes. Some of the alternative sites can be helpful in perhaps making you feel more in control, but they can also be very dangerous. Another primo site is Patient Power sponsored by Dr. Andrew Schorr, a physician who has CLL himself. I also like the closed Facebook page called Leukemia Lighthouse. Do not take ANYTHING, even vitamins without run-in it by your doctor. And, the best piece of advice anyone online ever gave me.....FIND A GOOD CLL SPECIALIST AS NEAR TO YOU AS POSSIBLE, even if you find you need to travel a couple of hours or so. Preferably one at a large university teaching and/or research hospital. I found mine long before I ever needed to start treatment. Best thing I ever did. You will be fine!

[AussieNeil Administrator]

Welcome Tonia,

It seems that you have had a difficult path to diagnosis and we all hope for you that your path with CLL will be boring in comparison :). Do you know if the iron infusions were related to your CLL?

It has been drawn to my attention that you may have used your real name as your login. If this is the case, you may wish to lock your post to maintain your privacy to this community per these instructions: healthunlocked.com/cllsuppo...

Neil

[sumok in reply to AussieNeil]

agreed better lock your post in any case.

all best wishes as your world settles into a new arrangement. you've come to the right place for encouragement and support and information.

[Oleboyredw-uk]

Welcome Tonia,

I’m sorry you’ve had to join us, however you are very welcome here. I found my diagnosis back in July 2012 and although I spent evenings on the ‘puter and google (scaring myself) it was maybe a week before I showed my hand and joined in. I think your furst day jooning is brave, well done.

Please take it easy, however fire off any questions you have. Chronic means this takes it’s time. New treatments and knowledge happening all the time.

all the best, rob

[annmcgowan]

Hi and welcome to this website. You have done the right thing coming here. I have learnt all I know and needed to know at each stage of my CLL experience here.

Good luck

Ann

[majcll41]

Hello. I'm also new to this community and newly diagnosed with CLL. I'm 41 years old and only in Stage 1. I was told I have no need for treatment unless I slip into a more advanced stage. I do have an enlarged lymph node which hurts, but the oncologist said it's because of an infection I apparently have. If you don't mind my asking, why do you need an iron infusion?

[Mamawof25 in reply to majcll41]

They said my iron is very low. I was told it would be next Wednesday. I also have to have an endoscopy. The right side of my colon is collapsed.

[cook4650]

Well, you've definitely come to the right place! I have learned far more here about my disease and treatment, and how to handle the ups and downs, than from all my doctors put together. Welcome and best wishes!

[MsLockYourPosts Passed Volunteer]

cllforum.com - link, along with Patient Power link, and other reliable ones, including this one, are all on the cllsociety.org site - very handy to only have to remember one to get to the rest.

I second Neil's suggestion to lock your post (restrict to community only), especially if you have used your real name. You might want to change your user name to something that wouldn't identify you as well. Unlocked posts and all replies can end up on google, Facebook, twitter, and just about anywhere else. As the original post controls the privacy of the replies, you tend to get more, and more complete responses on locked posts as well. If you need help with that just say so. You can also private message people through "chat" - don't know why they don't just call it message - or by clicking on their avatar and then message. A number there tells you that you have a message. A number on the bell tells you that someone has replied to or liked one of your messages.

If you give your general location others here may know of a good CLL doctor near you.

[LUCYLU51]

Hi Tonia hope you feel better soon . I found out I have CLL it was in sept 2017 I had 4 iron infusion and after that I had told my medical doctor about some knots in my neck she sent me to another doctor and he said it was fine not to worry well my medical dr didn’t like it so she done more test and blood work and another blood work and she found out I had CLL and she sent me to the doctor I’m seeing now and she has already started treatment on me I’m taking Imbruvica I take 3 pills at lunch time everyday. I hope everything ok and you feel better soon.

[pkpayne]

Tonia, I am so sorry that you had to join our group but I'm also very glad that you found us. You will find lots of compassion, knowledge, and support on this forum. Ask any question and someone will most likely be able to answer it. Best wishes for you on your journey. We are all here for you when you need us.

Paula

[Suzieinwv]

Tonya, I had to have iron infusions about 5 years ago, well before I got CLL. My storage iron was really bad. The infusions weren’t bad, and I did feel better afterwards. I now only have to take daily ferrous iron that is prescribed to me and try to eat iron rich foods and plenty of vitamin C to help absorb the iron.

I’m so glad you joined this site. You will find a wealth of information, and at times, you may feel overwhelmed with so many new things to learn.

When I was first diagnosed in Nov. 2017, I became very obsessive about my blood work and markers that they look for, and of course I wanted to hear about my prognostic markers. I wore myself out with worry. I have since settled down, and I now realize that we are all individuals, and we will all experience our very own unique journey.

[Hoffy]

CLL Society web site can help you,

Get a 2nd opinion before treatment,

30% of people never need treatment,

Hoffy