I feel a bit of a fraud being on here , My name is Emmah, 46 I live in the USA at the moment but I am from Sheffield and was planning on returning in a few years . So a bit of my back story , My mum passed away in 2017 from Acute Myeloid Leukaemia it was a shock to us all , it was caught late , the NHS fought to keep her with us . Since than I found out my grandmother also had blood cancer before she pasted at 98 years old . So fast forward to early this year , I had a lump on my breast , I wasn’t worried had cysts before , called my doctor here in the USA to make an appt , found out I was no longer a patient as I hadn’t visited in 2 years so they dropped me lol, set up appt for next avail which would have been yesterday lol. So I start looking for a new doctor , find one set up appt for September . Anyway feel fine , lump gets bigger and painful quick , called breast clinic told need referral from doc , so as a last ditch effort I end up in ER , after bloods and scan , its a cyst get referral to clinic , have cyst drained the next week …I kept My new doc appt after seeing how hard it has become to find a doc , she turns out to be lovely , give me a physical, including bloods in office , checks all my history online and sets up a 2 week appt for results , I return says I have a raise in white blood cells and anemia , redraws bloods, receive a call to say still raised and is referring me to a hematologist ,( I could hear my Nan in my head saying you need Iron my Girl ) any way sorry so long of a post , Get a call from hematologist to say doc will review and call back with an appt . Well I get a call back this time from oncology and hematology for an appt for the next week the 10th , 2 days ago . I knew than my legs went weak and I relived the 18 months of Mums Cancer battle .That was it I pulled my blood results and referrals online and off to DR Google , I knew a bit from mum and watching her levels daily , i know nothing lol what i did do is prepare myself with basic knowledge of what the doc could tell me , I just kept worrying that I wouldn’t make it to the UK for Christmas which has been planned for Months, taking my daughter and hubby this time. So Thursday rolls around , meet a lovely Doc , do the standard so what brought you here ect , turns out he supports Arsenal lol and than he tells me its Chronic lymphocytic leukaemia (CLL) , It was the best of a bad lot and a relief . so more bloods back in 2 weeks . and Holiday is still on.
Nice to meet you all xxx
Welcome to the forum @Divine.
Wow, what a story! So much has happened within your family and now you. It must all feel a little surreal?
I’m really glad you found us. I think the forum will really help and so many people will be able to share their experiences.
I’m really glad you are still able to visit for Christmas. It sounds as though it is a visit you are all looking forward to.
So at the moment no treatment, just active monitoring?
How are you coping with the diagnosis, and your family?
I look forward to hearing more from you.
Hi @Divine a great big welcome to our forum and I am glad that you have found us in the UK.
Thanks so much for setting yours and your family’s scene so clearly.
You certainly have a history of blood cancers and if you are anything like me your emotions were already on high alert when you got your diagnosis, it is a tremendous shock though.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) at 53 yrs old 18 yrs ago and I have been on watch and wait (active monitoring) ever since.
My diagnosis was actually in mid December and my Christmas Card crossed in the post with a card from a friend in Los Angeles who had also just been diagnosed with Chronic lymphocytic leukaemia (CLL). She had treatment immediately and has a very active life today.
When I was diagnosed, I immediately came home and wrote my will and funeral music. Christmas was a blur with me in a bubble and the world going on celebrating around me.
Being an Arsenal fan myself I also love your lovely doctor.
There is a lot of useful information on the Blood Cancer UK website.
We are all here for you and although I know you are currently in the USA, when you are in the UK.
Perhaps write down all your fears, questions and practicalities you want answers to so you cover everything you want to at appointments.
Please keep posting and really look after yourself.
A very warm welcome to our forum. I am really pleased you have found us. To say you have been through a lot lately maybe somewhat of an understatement. I do hope you & your family are coping okay?
It’s understandable to feel some kind of relief when you have been through so much with your family and have that horrible period of unknown.
May i ask, have you been told if treatment is required at this stage or are you actively being monitored?
I wondered if some of our information booklets may be of use which talks through different aspects of what happens now, offers some practical support & also some disease information which will likely translate quite well across the pond. Both of which i have linked to below-
Chronic lymphocytic leukaemia (CLL) booklet | Blood Cancer UK Shop
Please do also know that our support service team are very much here for you at anytime should you wish to talk anything through with us- Blood cancer information and support by phone and email | Blood Cancer UK.
Finally, I’m certain you will have utilised this webpage but in case their support is of any comfort to you, we do know that they also offer some really great resources across the US- Leukemia & Lymphoma Society | Blood Cancer Leaders | LLS.
Do Take Care, Lauran
I’m glad you had a semi-happy ending to your story @Divine and that you can make it to Sheffield for Christmas ( I recommend a raincoat, it hasn’t stopped raining in the UK for weeks!). Your doctor should support a decent team like Newcastle Hope you’re good and stay in touch.
How are you doing @Divine ?
Sounds like you’re being looked after well over there and Chronic lymphocytic leukaemia (CLL) means you certainly don’t have to worry imminently about being too sick to travel and enjoy life! I was diagnosed in 2014 and have only started treatment this year, so if you want an insight into my journey, then I have a blog in which I write with honesty, hope and humour, if you’re interested: www.mybloodycancerjourney.co.uk
I wish you all the best and a very happy Xmas with family Angela
Hi Divine, getting a bit chilly over here so bring your woolly clothes with you when you come home ! When I was diagnosed with Chronic lymphocytic leukaemia (CLL) in Aug 2017 the haematologist said if every there was a leukaemia to get it’s Chronic lymphocytic leukaemia (CLL) ! I was on watch & wait until May 2021 when my haematologist decided to start my treatment. This was due to my red blood cell count going down from 130 (normal for me) to 95. I was getting tired more frequently, but was fit and healthy apart from that (I had no symptoms). I don’t smoke or drink and have always tried to eat healthy and go to the gym regularly and generally tried to stay as healthy as I can. I started my 12 months treatment in April 2021 which consisted of two targeted chemotherapy drugs. Obintuzumab for 6 months by intro drip at the day unit at the hospital. The first month I had 2 doses 2 weeks apart and for the next 5 months one a month (7 rounds in total). Venetoclax for 12 months in tablet form each day, working up from 20mg per day to 400mg per day over a 5 week period. My treatment finished April 2022 and I no longer have Chronic lymphocytic leukaemia (CLL) in my blood, I’m back on watch and wait. I asked when I might need treatment again ? My haematologist said she didn’t know, it could be 5 years or 10 years ! I asked how long have people gone without having to have treatment again after having the targeted chemo treatment I’ve had ? She said they haven’t needed further treatment and that she couldn’t say this treatment was a cure, but it’s looking like it could be ! We all have difficult times in our lives that we have to deal with and these experiences make us stronger and put us in a better position to help others. Stay strong and positive and if you wish to ask me any questions regarding my Chronic lymphocytic leukaemia (CLL) treatment please free to do so. Best wishes x
Good luck and hope all goes well. I have Chronic lymphocytic leukaemia (CLL) too and have been on Watch and Wait for just over 10 years now.
Hi @Divine I have been thinking about you and I just wondered how you are now?
Take lots of care of yourself
Hi there, I am a new member of this and signed up after being recently diagnosed with Chronic lymphocytic leukaemia (CLL). I am 24 years old and just finishing my final year at university. This diagnosis has come as a shock, like others have for people and I keep crying. I feel scared. How long did people wait to find out their treatment plans?
A great big welcome @Locket17 and I am so glad that you have found us and had the courage to post.
I read your post and the feelings I had were so similar when I was diagnosed and they came whizzing back although I was diagnosed with Chronic lymphocytic leukaemia (CLL) 19 yrs ago.
Yes, it is so natural to be in complete shock as I do not suppose this is what you had in your life plan.
I believe that crying is a way of letting out your feelings and natural and healthy.
I would be completely surprised if you were not scared, I felt alone in a bubble with the world carrying on as normal around me.
Do you have any support from family or friends?
Anyway you are now part of our forum family.
As for treatment plans it is difficult as we are all special unique beings and so are all health professionals.
I have found since my diagnosis I have spent a lot of time waiting on others.
Also I entered a world that spoke strange medical speak.
I have been a very lucky girl and my treatment plan has been ‘watch and wait’ or ‘active monitoring’ where I have blood tests at regular intervals and my symptoms are checked and any other tests done if needed then a decision is made whether to keep me on that regime or consider a treatment plan.
I could not get my head round this or explain it to others, I expected a diagnosis, then treatment and we would all go back to normal.
Please do read the Blood Cancer UK website and if you would like to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
If you have questions whizzing around in your head perhaps now is a good time to write them all down.
The main thing is to really look after and be kind to yourself and please keep posting and you can ask me any questions you would like to.