Recent Diagnosis Hairy Cell Leukaemia

Hi Tracey and welcome to this corner of the Community, although I have a different type of rare blood cancer Cutaneous T Cell Lymphoma (Skin Lymphoma) (CTCL) I do understand the anxiety you will be facing - everything is raw and your mind is a whirlwind.

First, your regular checks? I would have thought it would be with your consultant - you need to call the Heamatology Department and ask them.

Watch and Wait or as I remember calling it Watch and Worry.

If watch and wait is suggested for you, it means it is in your best interests to keep an eye on your condition and to save treatments for when they are needed.

There is lots of evidence that people do just as well in the long term if they are actively monitored and have other treatments kept until they are really needed.

I was basically on W&W for over 14 years and after a year or so I got into a rhythm and got on with life, yes clinics did up the stress but on the whole I did ok....... you can see my story by hitting Thehighlander.

We have a number of folks with HCL and jay pick up on your post. You can actually search the Community by using the Seychelles tool, put in HCL or Hairy Cell Leukaemia and have a look at all the posts.

You will have other question but I will help out as best as I can ((hugs))

Dear Tracey, I think doctors underestimate the emotional strain of being on watch and wait, so it’s not abnormal for you to feel anxious. The positive news is that should you need treatment in the future hairy cell leukemia is very treatable with good outcomes. The challenge is going to be how you adjust to a level of uncertainty about the future and the regular check ups at your local Haematology department which can be unsettling in the early days after diagnosis. The solution is to give yourself time to come to terms with what has happened, it can’t be rushed and is a process that can take many months, but eventually you will learn to live with your new normal, it’s ok to be angry or sad, as a blood cancer diagnosis is nearly always a shock. You can share your anxieties here on the forum and won’t be judged and you will find that your feelings are quite normal.

Hi. I am in the same situation since October this year (watch and worry!). I just think really no one knows what a next day will bring!

I am a Christian and I always find (but especially these days) a lot of courage when whispering and try to say with my heart a very short but extremely powerful prayer..."Lord Jesus  Christ Son of God have mercy on me a sinner"

I wish all the best to you and everyone going through difficult situations of life.

Hi and welcome to the Community.

As you will have seen I was on Watch and Wait for over 14 years before full on treatment was required for my rare type of NHL.

Your team will see it's in your best interests to keep an eye on your lymphoma and to save other treatments for when they are needed. There is lots of evidence that people do just as well in the long term if they are actively monitored and have other treatments kept until they are really needed.... so treatment roads can only be followed once so it is important to do the right thing at the right time.

I see you are a Christian, we do have a small Faith Group on the Community so if you want to look us up then great as there is some great support.

((hugs))

Hi Tracey, I know you posted over a year ago on the forum but as you know it’s tricky to find someone to share with when it’s so uncommon. How are you getting on with your journey? I hope you are keeping well. 

Im newly diagnosed so really keen to hear how others have been managing the ‘watch & wait’ and potentially treatment.

thanks in advance, Lisa 

Hi Lisa, Tracey, all, 

I know this post is quite old, but as Lisa says it's difficult to find someone to share insight of HCL, as it's quite uncommon. 

I have recently been diagnosed and started treatment this week. If anyone has been through the same journey, I would be willing to share thoughts and experiences. 

Thanks a lot. 

Marta