Diagnosis in 40s

Morning Everoptimistic.

I've been away from work since last September. I work in a Primary school and last school year was terrible.

I was for ever catching infections from the children. So much so that my lymph nodes were huge (bloods also were up) and after a CT scan my consultant was considering chemo. I must admit I lost the plot a little, as I was told on diagnosis that Watch and Wait would last for years!! I have been unable to work due to anxiety. As I said I've begun monthly Immunoglobulin infusion, so far so good. 

Still not back in work as so, so worried about picking something up again and going back to square one.

On  family history, both my brother and father had leukemia, different types. Have been wondering if there's a connection?

Day to day I cope very well and on the whole am very happy.

Just have to sort this work situation out.

Have a good day.

Thank you for your kind thoughts.When I was first diagnosed I asked if it was hereditary but the consultant at the time said no. My consultant now says research is showing more family clusters . I just hope I don’t pass it on to my kids or grandchild . That would fill me with guilt. 37 is young, apparently I am one of the lucky 5% who are diagnosed under 40! I wish I had the same “luck” when playing the lottery Health unlocked is a brilliant site . There are people on there who will give you better answers and information than any hospital consultant. They are so knowledgeable and friendly. 

It was a great help to me when I was going through treatment and had various issues or questions. 

If I can be of any help to you please let me know. 

Hi there. Let me tell you a bit of my story as it may help. I was diagnosed 2 years ago at the age of 41.

I had an ear infection which knocked me for six, but more worryingly I had noticed a lump under my chin had appeared and a lump in my groin and armpit. To be honest I probably knew about the lumps under my arms for a while, but it was the one under my chin that caused me to go to the doctors. 

Doctor arranged a blood test same day and referred my as an urgent case. I remember it well, Monday 14th September 2015. I had a call back on the Tuesday saying it was most likely Lymphoma, however by the Thursday I had been to the hospital and it was confirmed as CLL. 

CT scan showed lots of enlarges lymph nodes all over body around 1-2cm. WCC of 26. 

Got a second opinion from BUPA who said often in younger patients it tends to hit a bit harder and faster, however often they can then treat harder too. They also treatment is often required in “a low number of years”.

I had bone marrow biopsy done and showed favourable results for gene test. This means I have a better opportunity of response to chemotherapy.

I then went onto watch and wait for around 2 years, however around November last year, even though I’ve had no infections, blood counts remained stable, the consultant decided it was time for chemo. This was due to bulking lymph nodes. CT scan done again and lymph nodes all over body had increased to 4-6cm.

So, I’m currently undergoing chemotherapy, FCR to be specific. I’ve completed 4 of my 6 cycles and so far so good.

Massive reduction in lymph nodes, bloods all reduced and stable, and side effects minimal.

Basically I’m out of action for just over a week each month, then bounce back to normal work and family life before the next cycle. 

Don’t get me wrong, this has been an emotional rollercoaster for the last few years, however life goes on and as long as you remain positive you can have a long happy life with CLL. I know that everybody is different, but a positive attitude definately helps.

Feel free to get in touch if you’d like to chat or if you have any questions. More than happy to share more.

Hi, I was diagnosed when I was 42 and think I had CLL for a number of years before I realized. I am now 60. At first I was told to just hang around and come back in 10 years so I sought another opinion and started having Rituxamab for a number of years when I needed to get my white count down. In my early 50’s I had to have FCR which didn’t go down too well for me. In the next few years I had some major issues with my red blood being destroyed my immune system. Luckily I got to hospital in time for blood transfusions. Then I had trouble with my lungs and got PJP a very dangerous fungus in my lungs. In 2015 I had Ibrutinib for a year and that was great until my Red blood, platelets and Nuetraphils were once again playing up. Last year I was very sick and had no bone marrow left and so I tried Bendamustine. That held me for 6 months. I am now in the initial stages of having Ventoclax and so far so good. I have just about exhausted every other treatment. What you have on your side is the amount of good drugs available now as opposed to 20 years ago. I was also told this by someone 18 years ago and although it might sound all pretty bad I have survived, have seen my boys boys grow up and feel thankful that I have gotten this far. Initially I was told and have heard of people in their 40’s who have not had to have any treatment at all. My father was diagnosed 11 years ago with Mantle Cell Lymphoma, which is in the same family. He survived for 2 years and now my brother has the pre CLL. They say it doesn’t run in families. I hope I haven’t scared you but everyone is different and I wish you well on your journey. Winterwild

Thank you Winterwild.  Although it does all sound a bit scary, it is so important to have information, and the specialist / GP seem to have very little of that (or they just don't want to share it).  I appreciate that best case scenario is very rosy but want to be as prepared as possible for the less favourable prognoses. I really appreciate you taking the time, and hopefully it will be helpful to anyone else who receives this diagnosis earlier than most.

One question I forgot to ask - has a bone marrow transplant not been an option for you, and if not, it would be interesting to know why?  Thanks again

My Younger sister was bone marrow compatible right from the beginning, however I don’t think they  use that option much as it interferes with what drugs you can use. I have had 3 doctors, the first one died and the second one referred me to a Hematologist as he was an Oncologist. None of them have ever suggested having a BMT. Over the years the drugs have become so much better. Last year when I was very sick I was told a transplant would kill me. So far so good on the Venetoclax, fingers crossed.

Hello to everyone here,

Im in the unenviable position of being diagnosed with 

cll at the age of 37.having been on ibrutinib for nearly 5 years,I’ve now relapsed.my options are limited but I will 

shortly start venetoclax. I also have to make a decision on a transplant.has anyone undergone this procedure?

Hi and welcome to the Online Community, although I am sorry to see you finding us.

This is a year old thread but let’s see if the folks are still looking in past the Community. This forum is slow but has lots of members so let’s see if some of those looking in connect with you.

You may want to join the group as this will mean that you get email notifications of any reply’s to this post. You can also start your own discussion by hitting the 'Start a Discussion' tab just under the main group name.

You can also do a word search using the search tool near the top to see if anyone has been on Venetoclax.

You may also want to join our dedicated Stem cell transplants for blood cancers (SCT) Forum where people from various blood cancers have been through SCT - I have been through two Allo SCTs with cells from my brother.

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names like my one Thehighlander

Always around to help out.

Hi Karmastu

Since my diagnosis, I have been lucky, as although my symptoms have got slightly worse, I remain on watch and wait, so you are effectvely dealing with (or have alredy dealt with) the issues that I am expecting and was asking about when I originally joined this forum.

I did receive many interesting and very informative replies so I sure that you will too, but as advised already, it may be worth you starting a new subject for discussion, as people may not stil be looking at or responding to this old one.

I have my bother "in reserve" for  transplant services, and although we laugh about it, it is a very serious matter and from information that I found from various sources online, it's not an option for many (though I remain unclear as to exactly why....)

I wish you all the very best, and will be interested to see what advice you receive, particularly as things seem to change as time goes by and different treatments become available or are improved.

I hope you get th advice you need.