Early Tuesday morning I have an appointment with my hematolgist to find out whats wrong with me. My routine physical showed I have pancytopenia. I’ve had 60 different blood tests and an abdominal ultrasound. The only thing I know from these tests is that my spleen is twice as large as normal.
At this point I don’t know what my doctor is going to tell me. So far I haven’t had a bone marrow biopsy yet. It might be pending, guess maybe I’ll find out Tuesday. Also, my doctor told me be to be care about doing anything that might rupture my spleen.
Just a little about the emotional roller coaster so far. One of the blood tests for the Kappa Free Light Chains was very high. I made the mistake of looking on Google to find out what it meant. Google search told me I had a defect in the plasma cells that said I had Multiple Myeloma. I had an appointment with my family provider and I had a complete panic attack and cried all through my appointment with her. However, my hematolgist told me a lot of things could cause the number to be high.
I am asymptotic and feel great and have a problem seeing that I might be very ill. But, I am also very afraid of what my wife and I will hear on Tuesday. This has put a huge damper on Christmas.
Welcome to the forum, hearing this news at any time of the year is never easy but can be even more difficult at this time of the year.
The Support Line will be closed today 24th, 25th and 26th December 2023 and Monday 1st January 2024.
Outside of our opening hours, please feel free to leave a voicemail on 0808 2080 888 (Option 1) or send an email at support@bloodcancer.org.uk and one of the team will get back to you as soon as they can if you have any questions they can help with.
In the meantime the forum family are here and will support you any way we can too.
It is difficult but do try and rest over the break the way I look at things is that my worrying isn’t going to change anything. If only worry could make things better we would all be fighting fit heh😉
All the very best do let us know how your appointment goes.
Hi @Douglas a great big welcome to our forum, although it is not where you want to be.
Perhaps confess your Googling mistake to your Haematologist and tell them what your fears are.
There is nothing wrong with with having a panic attack and crying through your appointment with your family provider. They need to know how you are really feeling.
You say that you do not have any symptoms and feel great so perhaps, and I know that it is not easy, but just try and live your life.
It is great that your wife is going to your appointment with you, perhaps you can write down your fears, questions and practicalities together.
Please do get everything covered at your appointment and let us know how you get on.
Look after yourselves
Thank you Erica. I’ll post more after I see my Hematologist. Thank you for suggesting to write down some questions. We will do that. Hope you have a Merry Christmas.
I saw the hematolgist on Tuesday as planned. She told me that I don’t have Leukemia. She said the blood test are indicating a liver problem. So I’m going for ct scan and another ultrasound to further study the liver.
If these test come back negitive. She said that its possible I might have a low grade lymphoma thats causing the spleen to enlarge. I guess it more waiting. I’ll see her again in three months for more blood work.
Waiting is so difficult it can take some time and that can feel like forever. But it is important especially with lymphoma if it is indeed lymphoma to identify the type of lymphoma as it can be one of so many different types and the treatment is designed to suit the type of lymphoma very specifically.
I also have low grade lymphoma. For many years I was treated for indigestion until my lymphoma was discovered by accident. It too a good couple of months to get the type but that was six years ago now and I am just great . I had some treatment then but am now in active monitoring.
Stay with it you can do this. Keep reaching out we are all here to support.