Thought We Were Dealing with CLL Only
Hi all,
We went to the hematologist/oncologist today to get the results from my dad's bloodwork. He felt on the initial visit my dad has CLL. At this visit today at first he said from the bloodwork he still believes it is CLL and he would get a petscan and follow up in a month but then as he continued looking at all his blood work he said he actually needs to do a bone marrow biopsy because it looks like he has a gene mutation called Jaks2. He was talking way above my understand of what this means. I tried to do some research but still not really understanding what this means or why or what the biopsy will tell him. My dad is 87. He seemed genuinely sorry he needs to do the biopsy which is scheduled for Monday. Does anyone know anything about this? The doctor was way behind so I didnt want to keep him longer trying to explain things because even when he did I still did not understand and I have worked in healthcare for years till I retired as a cardiac tech. It was all way above me. TIA
Hi
,
I do hope your father feels better soon. It sounds like he is getting the care he needs and deserves. This can be really complicated stuff!
I thought that maybe a link to a few of our articles on the subject might help. I'll attach them here: https://blood-cancer.com/clinical/jak2-mutation
https://blood-cancer.com/clinical/cll-sll
https://blood-cancer.com/treatment/cll-leukemia
If you copy and then paste them into your URL bar you should be able to go straight to the article. Or you can use the website search to find more articles on the topic and find stories written by patients who have been living with CLL.
Please do take good care of yourself as you support your father through this. It sure can be a stressful time and he's probably so grateful for your help.
https://blood-cancer.com/caregiver/thank-you
Wishing you and your father a direct path through this difficult time.
Sincerely, Maria.Thank you very much for your kind thoughts and the links. I think the hematologist is not sure now which Leukemia my dad actually has and is why he is doing the bone marrow biopsy along with looking for the finding of the Jak2 gene mutation and exactly what that means for my dad. Hoping after Monday we do not have to wait too long for the outcome. Do you know how long it takes to get results? I do not live in the same state and was scheduled to fly home in a few weeks but may not do so now. It is so hard not knowing the future and what I need to do or how my dad's outlook is.
I think the test results shouldn't take too long, but it's so difficult waiting for them. I'm not sure of the situation where you are, but it might be a good idea to call the office of the doctor and speak to someone about your situation. They might have more insight and advice to give or there may be supports available that they can point you to. I've had some good advice about supports at my local Cancer Agency. A few phone calls might help give clarity. Taking noted helps me too, so don't be ashamed to have pen and paper in hand. I hope it all helps. Sending hugs to you and your dad.
And to add to that 📝 the social worker will be your best friend I know in my situation the social worker and I became best friends I called him often and he was so resourceful💞🙏🏾🐼🧡
