I have CLL

[LUCYLU51]

I'm new I found out in Sept 2017 that I have CLL I'm 51 I am so scare I have been to two cancer doctor the first doctor said that I have had it for a while he didn't want to do any treatment right now. So my kids and husband wanted me to get a second opinion so I did and she said I was stage 1 and she done the fish test and started me on imbruvica I hope it help me I have been on it 3months.

[Jacksc06]

Hello, Welcome to the family. Most people are frightened at the point of diagnosis. You are not alone. If you have questions ask away the good people here are a wealth of knowledge & experience. I have catalogued my journey from diagnosis to present day. Please feel free to read. I hope it is of help to you. Best wishes.

[Newdawn Administrator]

Hi Lucy and welcome!

It’s very unusual to start treatment at Stage 1 soon after diagnosis but some experts are becoming more persuaded towards early Ibrutinib treatment in certain situations.

I’m wondering if you have a CLL specialist and purely out of interest, what the clinical reasons were for starting CLL treatment so early. You mention your family being unhappy about the first doctor not wanting to start treatment and I’m wondering if the impetus to start treatment with the second doctor perhaps came from your side. Have you any idea what the FISH test revealed in terms of your biomarkers?

The main thing is I hope the Ibrutinib is working well for you with no adverse side effects.

Best wishes,

Newdawn

[LUCYLU51 in reply to Newdawn]

I don’t know how to read the fish results but before they found out I had it . I had to have 4 iron infusions and I have swollen lymph nodes in the neck under arms and groin and lost about 30 pounds feeling tied all the time and something about spot on my chest as a dime size and stomach and the dr is the one suggest I take chemo are try the imbruvica . I hope you can make sense out of this I’m not good at trying to explain things sorry.

[Newdawn Administrator in reply to LUCYLU51]

That helps to explain things Lucy. It sounds as if you had anaemia perhaps caused by a low RBC/haemoglobin count and this coupled with the constitutional symptoms of weight loss, swollen nodes and severe fatigue may have been the reason for starting you on the Ibrutinib (which isn’t actually chemo).

Hope all goes well and you respond brilliantly to the treatment. It sounds like it’s all been very tough on you and your family.

Best wishes,

Newdawn

[samsayegh in reply to LUCYLU51]

Be strong , have the faith in God and have a good Oncologist .Where do you live LucyLu51 ?

[LUCYLU51 in reply to samsayegh]

Alabama

[LUCYLU51]

Thank you .

[CLLCalifornia-USA]

Welcome Lucy. I’ve been on Ibrutinib for 14 months and I’m doing great. No side effects as of yet. It feels so good to have my energy back. Best of luck. Sally

[Eric_68]

Hi Lucy.

I have just been Diagnosed Jan 2018, Was sad to hear there is no treatment.

Was hoping for a magic pill to make this go away.

Currently at Stage Zero, but I don't know how long each stage lasts and I'm afraid of the coming symptoms. Every headache and every pain in my body makes me frightened of the worst even tho not related.

I'm still not dealing with the news very well and iv been depressed now for weeks, but I hope with time I will come to terms with this.

[alpha-b in reply to Eric_68]

Hello Eric,

I was also diagnosed with CLL in stage 1 last year. I am just 37 right now. I don't know about your age but from your msg here seems like you are very much depressed. Let me tell you bro, you don't need to get depress at all, the more you will think about it the more you will be getting in trouble.

You should just lead a happy life. There is no way that in near future you will be needing any treatments and I am sure that by the time you will be needing any, there will be new discoveries in this field.

Just focus on your family and friends, spend quality time with them, play sports, try to do some physical exercise daily, eat healthy food and leave the rest to God.

Best of luck

[Eric_68 in reply to alpha-b]

Thank you Alpha.

im 49 and appreciate your reply.

I pray and trust God . glad for this site as im scared to talk about it. This is my first step opening up.

[LUCYLU51 in reply to Eric_68]

I know how you feel. I can’t sleep good at night worrying about it I’m trying hard not to . I am so glad I found this place where I can talk about it . And I’m not along . I don’t want to worry my family I try not to talk about it I don’t want them to worry about me . And all I have read on here I m not the only one that feels like this and there some here that has had c l l longer then me and that gives me hope. I wish there was a magic pill to I hope you feel better soon .

[Big_Dee in reply to LUCYLU51]

Eat healthy, avoid refined sugars and exercise. Above all realize that you need to also support your family so they can support you without it becoming the only conversation at the dinner table. Follow God and remember you are never alone when you walk with God as God loves you. You can come out of this funk, My God Bless You.

[lrcooke in reply to Eric_68]

I just found out in jan 18 that i was stg 3 cll and needed immediate treatment. Looking back i may have had this for as long as 15 years. On one hand i wish i had known. I feel i would have been able to get my finances more in order. I am 55 and my plan revolved around retirement at 65. Also although I did travel a lot maybe i would have appreciated so so much more. I was previously thinking i had all the time energy and finances to travel . My grandkids live in Texas and I traveled to see them at will (from nc). Now due to timing of chemo missing my grandaughters 5th birthday. Long story short take take the time to go and do and prepare now.Dont stop living.

[Ellieoak]

Hello Lucy welcome! I was 49. When diagnosed. I am now 64 and have been on Imbruvica for 5 years now. I’m feeling pretty good now with minor things happening. Thank God , I’ve had some good doctors. Good luck!

[annmcgowan]

Hi Lucy I can’t add more than has already been said. Just wanted to say welcome you have come to the right site for support and education on better. Good luck with the treatment I start Ibrutinib and Rituximab next week. Being afraid at first diagnosis is normal and when you are told you need treatment. You have had a double whammy so be proud of yourself you are doing well.

Good luck

Ann

[pkpayne]

Welcome to the group that understands just where you are and how you feel. We've all been there. I can't recommend anything that anybody else hasn't already but I wish you all the best in your journey. Feel free to visit this site regularly and post your worries, concerns, and triumphs to share with the rest of us. Also feel free to vent or just invite us to a pity party. We do understand.

Paula

[Eric_68]

Wow.

Thank you all for your replies and support, You all made me smile and I feel better already.

I'm not sure about exercise, I used to exercise often but I have recently stopped thinking ... "To conserve energy"

Should I be exercising? or is that burning precious energy?

[AussieNeil Partner Administrator in reply to Eric_68]

There is excellent evidence that improving our fitness helps us weather treatment better and intriguingly, it can actually reduce fatigue levels - provided we don't overdo it...

[LUCYLU51]

I had to go have some blood work done yesterday I have had some things going on and my doctor wanted me to come in early my appointment at 8:50 this morning I have had maybe 30 minutes of sleep I’m worried that she will stop my meds plus I had awful day yesterday. It was raining here yesterday and I was out in it all day doing for others after I had blood work done . I’m sorry I guess I’m feeling sorry for myself. But I get so tied of other people in my family wanting me to do things for them I have to wonderful children 33 and 24 and they never ask me to do for them it’s other family members it’s like they don’t care how I feel . And I’m laying here can’t sleep and worrying about going to the doctor today I have never been lazy always was up early in the morning and now I just don’t want to be around anyone is this normal will this get better

[MartiP2009]

I was scared too at the beginning, I’m going on 10 yrs, I’m 64yrs old. Started treatment from the beginning. To me knowledge is power, I researched it when diagnosed and began eating as healthy as financially possible (organic). I’m a Christian and knowing God is in complete control gives me peace. It’s not an easy thing to live with I know, I’ve relapsed twice and looks like from all my recent blood test that I might be looking to another relapse. Hang in there!

[LUCYLU51]

Thank you all .