Pv anxiety
Posted , 4 users are following.
i was dx with Pv jak 2 mutation approx 4 yrs ago. For the first 3 years I didn't feel any symptoms and went to my oncologist about every 4-5 wks. My platelets would rise sometimes 200 pts and the next month drop 300 pts. It was fluctuating greatly. I only had one phlebotomy and couldn't take aspirin due to stomach upset. My platelets finally hit 1 million and I changed Drs to an MPN specialist. I am now on Jakafi about 3 mos. my platelets are going down slowly, last reading 635. But I have now become a nervous wreck. I think about it constantly. Does anyone else suffer from anxiety and depression due to your Pv dx? If so, please tell me what you do or take for it. How do you cope? Thanks. Zap
0 likes, 10 replies
angela_o..o Zapamania
Posted
Hello. I'm really sorry that this disease is getting you down. I suppose how you feel depends on how you look at life in general.
Are you otherwise fit and more or less able to do the things that you would like to do in a normal way? Or is it getting in the way of enjoying life "outside the illness"?
I am lucky that I don't worry about it at all. But I am old enough to feel that I have "had a good life" and been lucky in not suffering from any sense of missing out on things.
I have a brother who is currently receiving treatment for chronic leukaemia, bladder cancer and prostate cancer all at the same time. His oldest friend recently picked up a bladder infection, got septicaemia, went into a coma, lost a leg and a hand to gangrene and is currently on permanent dialysis in hospital. My old boss spent Christmas in intensive care because his chemotherapy for prostate cancer reduced his ability to fight the common cold. Friends that I knew when I was young died of such things as multiple sclerosis before they had a chance to realise their potential. One died in a car crash a few weeks before her 21st birthday.
Life is both mundane and incredibly precious. Enjoy what you can do and don't think about what might have been. Live each day as it comes and write down every evening the good things that happened. Even if it's just something like the fact that somebody smiled at you.
All the best.
Zapamania angela_o..o
Posted
Hi Angela yea I'm ok physically but I don't want to do the things I used to do. Thanks for the advice and taking the time to answer me. I'm just getting funky in my head. I think I suffer from winter depression anyway and this hasn't helped my situation. Sometimes the thought of getting dressed overwhelms me. I put off a lot of things. I'm going to the dr today and find out what my numbers are. I've been on Jakafi for 3 months and I'm wondering if it causes depression. I'm asking today. Zap
angela_o..o Zapamania
Posted
I suppose there is a possibility that the Jakafi is giving you depression.
Or maybe it's just the winter blues. Do you have a SAD light? I bought one a few years ago and it really does help to (literally) brighten the mornings.
Zapamania angela_o..o
Posted
Hi Angela I don't have a SAD light but I think I need one. That's definitely on my list of something to get. Zap
vicente06432 Zapamania
Posted
Hi Zapamania, I've read that Jakafi is a good treatment, better than the others. Do you have any hobbies that you like(movies,TV shows, books, comics, video games, etc)?. Spend your free time doing something you like it and try not to think about your disease. I know it's hard to do such a thing, but, it's the best thing you can do.
Zapamania vicente06432
Posted
Hi Vincente yea Jakafi is working for me. My platelets reached 1 mil and as of yesterday they are 588 and my hematocrit is low. I do like tv and movies. Also like to read. However there are times when I can't function cause this disease haunts me. You know the why me syndrome. The other problem is that no one ever heard of it and cause you don't look sick they think you're fine. It can get frustrating. Zap
richard96620 Zapamania
Posted
If Jakafi works for you, continue to take.
As most of us are aware, there is still no sure cure for MPN, Jakafi could be one of the cure....Richard Law
Zapamania richard96620
Posted
Hi Richard it seems that Jakafi is working for me. I am on a lower dose than originally prescribed. I was first given 10 mg 2x day but I couldn't handle it so the dr lowered it to 5 mg 2 x day. My platelets are dropping slowly like 50 pts per month. And the side effects are few. Some body aches in the morning and this newly acquired depression. Linda
richard96620 Zapamania
Posted
Looks like Jakafi is good for some of the patients. We need to thanks to those who put in efforts to develop drugs for us.....Richard Law
Zapamania richard96620
Posted
Hi Richard I agree. We are so forgotten in the big pharma world cause there seems to not be enough of us to matter. I don't know the stats but before Jakafi all I know of is HU interferon and pagasys. I hope they continue to research and develop more options for us. I am thankful that I could tolerate Jakafi. HU was not for me. Linda