Hi
I am new to this forum and not quite sure what I am doing. I was diagnosed with PV a month ago. I was told at a face to face consultation that I was on ‘watch and wait’. During a telephone consultation today I was advised to consider having weekly interferon injections to prevent further clots forming. They are going to forward the info. Has anyone else had these and how have they managed any side effects?
At present I am finding the extreme fatigue difficult to manage. It is too hot to venture far from my electric fan. Being offered treatment makes it seem more real. More threatening somehow. Being new to this relatively rare condition I feel I must trust the consultants advice but would like more information if possible.
Kind regards
Marylin
Hi @Marylin I am so glad that you have found us so quickly, you must still be in shock. I cannot help you medically as I have a different blood cancer, but just reading your post brought back those feelings of fear and shock and being in a bubble with the world going on around me. I thought I was the only person in the world in the position I was.
Yes, extreme fatigue is difficult to manage and obviously this current weather is definitely not helping. I have learnt to manage mine over the years.
Yes, being offered treatment does really make it all so real.
Do you have and support from family and friends, although I found it very difficult to explain to others what I did not really understand myself.
Anyway you also have us all to support you now and you have posted brilliantly.
I am on ‘watch and wait’ or ‘active monitoring’ which is not unusual with blood cancers.
Perhaps writing down all your fears, thoughts, feelings, questions, symptoms, options and practicalities and then when you talk to your medical team you cover everything everything you want to and if you do not understand any terminology please ask for clarifications.
I hope others will be more help but if you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk
Take lots of care of yourself especially in these hot temperatures and keep posting.
Hi @Marylin and welcome to the forum. As @erica said it’s a lot to get your head around isn’t it. I can imagine your mind is doing somersaults!
Like Erica, I’m on watch and wait but for a different blood cancer. I’m sure there will be somebody who has the same diagnosis who will be able to help - that’s the beauty of the forum.
However, one thing we all understand is those feelings at diagnosis, feelings around treatment and just adjusting to things.
I think its really important to have trust in your team and it sounds like you do which is fantastic.
Please keep sharing and updating g is on how things are for you X
Hi Erica
Thanks for your kind words. I am finding it difficult to form a trust relationship with any doctor as I haven’t spoken to the same one twice and my treatment options seem to be decided collectively at. Group meetings. Marylin
Yes @Marylin I can understand it must be so difficult to build a trust relationship with any doctor as you haven’t spoken to the same doctor twice.
This is a very personal opinion but I am quite in favour of group meetings. I believe mine are members of my medical team, plus any relevant experts countrywide by virtual media. I feel that for me it is better than just one person making a decision.
Please keep letting us know how you are getting on as we really support each other on this forum, you are never alone. Take care of yourself.
Hi,
I have P V and am taking both Hydroxycarbamide and Interferon Alfa for the last year. My platelet count has risen recently so my Interferon is now every week whereas before it was once a fortnight , The increased dose left me feeling drugged and heavy the next day but this is improving.
.My M P N buddy was a great help when I started the Interferon with great trepidation and I was fine.
Good luck with the Hydroxycarbamide I was O K was with that.
All the best Gail
Hi @Gail1 a great big welcome to our forum and you have already shown the value of it by sharing your experiences.
It is so useful to share our fears and trepidations, nearly all of us have them and also side effects.
Did you have support from any family or friends, although an MPN buddy must have been a very special support, and like this forum a place where you could really say how it was to be you.
How did you get an MPN buddy?
I look forward to hearing more about you, take lots of care of yourself.
Hi @Gail and a big welcome to the forum.
I’m glad things are slowly improving for you. Does your medication change quite regularly?
I’ve read about the buddy systems on other support forums and they seem to be a really good idea. What does it involve? The ones I’ve read about involve regular phone calls. As with @Erica, I’d be interested to hear about it.
Hi @Jilly20 thanks for the info I am sure that it will be useful for others to know on here.
Has anyone else used the MPN voice buddy scheme.
I believe Leukaemia Care also have a buddy scheme.
I know exactly how you feel @Marylin .I spent 9 weeks in hospital after my diagnosis and I rarely got the same nurse or doctor on any day of the week. Mostly it meant having to go through the whole routine of getting used to somebody new all over again and I rarely felt any confidence that they had my best interests at heart more that they were just ticking a box on their to do list for the day. I still lack confidence in my medical team after 3 years. I know people who have wonderful medical teams who really looked out for them, but I’m not one of them.
Hi Erica
My last face to face consultation was with another new consultant, unfortunately the notes on the previous consultation were not in my folder so the first ten minutes were total confusion until they were found. The admin in haematology department is deplorable letters come with appointments that require a blood test a week before but do not enclose the necessary blood test form. This means probably at least three phone calls to the hospital until I can reach an actual person not an answerphone. Copies of letters to my GP are at least two consultations behind, how can he monitor me without up to date info? Fortunately he has worked for 6 months in haematology as a junior doctor. Terms used in my case are fascinating and unique. They haven’t had anything quite like me before n their collective experience. The last blood tests couldn’t be done inlocal Medical Centre, I was told they don’t do the snake venom test, whatever that is, I am terrified of snakes. So mad dash to hospital an hours drive away to get the test done. So so stressful, at my age of 78 it is difficult to find someone to drive. My family were in isolation for 10 days. Normally I would drive myself but felt lightheaded and dizzy and my sight was blurring so not safe to drive.my aunt used to live in a house called ODTAA you could call my PV experience that too.
Marylin
@Marylin I haven’t dealt with stress well since my diagnosis and I am so, so glad that you did not drive to the hospital.
Yes, it is often the admin that lets down the NHS.
I think if we did not have to chase so much on the phone with hospitals then we might have a better chance of getting through.
I had a breast cancer scare a couple of years ago and they put a diagram of my boobs on my medical notes and every time I went for my haematology appointments all I could see was this diagram on the opposite side to my CLL notes, it was very off putting I have to say.
Houses don’t tend to have names as much now, I suppose that makes it easier for the Postie’s.
Did they find any snake venom in your test???
With your family in isolation for 10 days it really brings Covid closer to home doesn’t it, scary.
Take lots of special care of yourself
Without prying what dosage of interferon alpha you taking? I’m currently on 45mcg which is half the syringe at the moment weekly… So far I’ve been ok and not had any side efforts but know I was bad when I took 90 first time round?
Hi @Marylin sorry to hear that you’ve had such a rough time. I feel your pain with chaotic and disinterested doctors and consultants. My team are a shambles at the best of times and don’t make me feel as though they could care less what happens to me. It’s definitely a lottery isn’t it. I’ve seen many messages from people who are full of praise for their team and envy them greatly. I hope things settle down for you. I doubt you’ll have to meet any snakes!
Hi
There was a misunderstanding they have decided to put me on Hydroxycarbamide. I am glad as there are less side effects. I t is increasing my dizziness and lightheadedness and blurring my sight. These effects seem to come and go. One day I am not fit to drive the next, I am.
