Oh @Suenew1967 so glad that you have joined our merry band.
You have certainly gone through a lot since having a lockdown diagnosis in Feb 21.
I am a great one for a sense of humour and I see things very visually in my mind.
I think your post will help so many others, plus all your separate experiences.
Be kind to yourself as well.
3 Likes
@Erica thank you so much, currently working out how to navigate round the forum! Yes humour and visualising helped me immensely and I take time out for me often itâs so important. We all have unique experiences along the way donât we. You take good care of yourself as well 
3 Likes
Hi everyone! My name is Joanne and myself and two members of my family - my daughter and my Mum - have a history of being diagnosed with Lymphoma.
In 2010 I was diagnosed with Non-Hodgkinâs Lymphoma - (mediastinal Large B Cell). I had 6 sessions of R-CHOP chemo along with Rituximab and 15 doses of radiotherapy. Thankfully I have been in remission and then after 5 years was cured. At the time we lived abroad so I had to be repatriated whilst my husband and 2 children remained abroad so the children could continue their education until the end of the school year.
Fast forward 5 years and my 19 year old daughter found a lump in her neck and was diagnosed with Hodgkins Lymphoma. She took it completely in her stride and had 3 months of ABVD chemo. It was absolutely awful seeing my child go through this but the fact that I had already been through it and she had seen me come through the other end helped her massively. Thankfully she is absolutely fine now. We thought that would be the end of our Lymphoma experiences but apparently not as my Mum, at the age of 83, was diagnosed with Hodgkins Lymphoma in 2017. She underwent chemo and radiotherapy and made a full recovery. Saldy in April 2020 she found another lump in her neck and was diagnosed with Marginal Zone Non-Hodgkins Lymphoma. For this diagnosis her ( and my) consultant felt a âwatch and waitâ approach was the best and strangely she had no treatment for this as the lumps simply seemed to disappear, though Iâm sure it was just lying dormant⌠However, around 18 months ago, as a result of a routine CT scan, it was found that unfortunately Hodgkins Lymphoma had returned. She was given three weekly treatment of Vinblastine which seemed to keep it under control. Sadly my Mum passed away this year in March aged 88, though there were further health complications (heart failure, chronic kidney disease) which led to this sadly.
I wanted to give a little back after the amazing treatment we all received so decided to join Blood Cancer Uk as a forum support volunteer. So here I am!!
If I can help just one other person that would be amazing.
4 Likes
Hi @Joanne01 a great big welcome as a Forum Support Volunteer it is great to have you on the forum.
I am so sorry yo hear that you lost your mum earlier this year, perhaps this time of year will bring up a lot for you so be kind to yourself.
I expect you will restart the discussion whether a blood cancer can run in the family or is the luck of the draw.
Are you in the UK now?
I really look forward to getting to know you.
Look after yourself
Thank you @Erica ! It is a case of getting over all the âfirstsâ since I lost Mum. I am an only child and Mum lived in an annex in my garden, we were very close and I miss her so much and Christmas will be very different this year.
When my Mum was diagnosed in 2017 I did ask my doctor and she sent the information to genetics but basically it is seen as not genetic, so basically the luck of the raw unfortunately. It is very bad luck as between us we have had 5 diagnosisâ of Lymphoma within 13 years.
We now live in the Uk and have been since 2010 and my husband rotated abroad from 2010 until 2021.
1 Like
Hello everyone 
Iâm Maggie and Iâve recently started as a Forum Support Volunteer.
Iâve been living with Chronic myeloid leukaemia for almost 12 years. Having started out on Imatinib, I then moved to Nilotinib and for the past year have been trialling being off the meds. Iâm monitored closely and am pleased to say that so far so good!
Reading through posts on the forum, I can relate entirely and am so happy to be able to be a part of this community so I can share my experiences and hopefully help others as we each navigate our own journeys. It is so wonderful to know that none of us are on our own.
4 Likes
Hi @MaggieLT a great big welcome to our forum
Thanks for telling us a bit about you.
I really look forward to working with you and look after yourself
1 Like
Thanks for the warm welcome @Erica - I look forward to working with you too! Enjoy your Sunday
1 Like
Hi All, I am here as part of the Forum Support team and I am new! I am 18 months into remission from Non-Hodgkin lymphoma (NHL) B-Cell and want to share my experiences with others who have found themselves in similar situations or indeed to support your family. I am really looking forward to being a volunteer and helping others.
6 Likes
Oh @McVey a great big welcome to our merry band and I look forward to hearing more about you.
Look after yourself.
2 Likes
@McVey welcome aboard! Iâve only been an FSV for a few weeks but really enjoying sharing my thoughts and experiences
3 Likes
Wow, what a journey you and your family have been on. I thinks itâs great that you are now able to support others X
2 Likes
You are definitely not on your own now you have your forum family x
4 Likes
Welcome to the forum. So great to have some new volunteers who can share their experiences and support others x
3 Likes
Hello everyone, so grateful to have discovered this forum. I am an English speaker residing in France so not everything will apply to me but the general questions will.
I have been bone tired for more than a year. When getting my second sick leave for a cold I canât shake, I asked for blood tests hoping to find a vitamin deficiency or at worst a thyroid problem. So the seriousness of sky-high lymphocytes has been a shocker. The doc actually didnât say âleukemiaâ at my appointment but didnât realize I would know what âChronic lymphocytic leukaemia (CLL)?â on my test referral meant. There are a few other acronyms with question marks on the test referral, but I have decided not to google them to keep worry at bay. One day at a time (already the first pearl of wisdom I have found on this forum.)
Well maybe you can already see my personality is the âtry to keep two steps aheadâ type, voracious reader and have to understand everything, so instead I must also learn to go with the flow.
Anyways thatâs enough about me, thank you to everyone for sharing your experiences. It has already been so reassuring to read about âwatch and waitâ, for instance. I had no idea some blood cancers could take that form. Thank you. 
5 Likes
Hi @Calathea a great big welcome to taking the brave step of actually posting on our forum, you seem to have gained a lot of information already.
I do not want to repeat what you have read as my story is out on the forum many times.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) 20 yrs ago and I have been a very lucky girl and been on watch and wait ever since.
Some people require treatment straight away others at various times.
I think I have learnt how individual we all are and how many different things are taken into account when consultants consider the way forward for us. Treatment options are more targeted to the individual now too.
As you say treatments and their timings vary country to country.
I have a friend in the USA and she was diagnosed at the same time as me and treated straight away, she is now in her 90âs.
If you have any questions please ask me.
I look forward to hearing more about you, do you have any support?
The best thing you can do is to really look after yourself and be kind to yourself.
3 Likes
Thanks so much, Erica, yes your experience was particularly heartening, as is the one you just shared about your friend in her 90âs. I have a small circle of friends but family is far away, unfortunately. The hardest thing might be the cultural differences because I tend to find French doctors rather old-school, their way or the highway, donât question them etc. But I will persevere until I find the right specialists for me. I am lucky to be near Paris where most specialists are concentrated, I believe.
3 Likes
Thanks @Calathea yes, keep persevering and posting, I expect we will understand on our forum, You will never be alone now.
Take care of yourself
2 Likes
Hello to everyone ! Im Nina and im new here, not sure , if its the right place to introduce me, im sorry. Im 40, from Moldova and havenât got my diagnosis yet. In the spring 2023 , due to high level of platelets in my blood ( 750) I have an examination by hematologist , Ive made Jak2 test ( positive), and now Im waiting the result for biopsie.
I would like to find support and dont know what else , im frustrated, , confused, because here my doctor doesnât explain me what it is and what to do . I only have read information about this disease in internet, with a big stress.
Thanks , im sorry for my language.
3 Likes
Hi @NinaSt you have posted perfectly.
Perhaps write all your questions and ensure you ask all of them when you see your haematologist.
What I would say though is that different countries approach diagnosis and treatment (or not) in different ways and have access to different drugs
Perhaps the internet can be a confusing place with information from all over the world.
Please do let us know how you get on and it must be stressful for you and take lots of care of yourself
2 Likes