Hi. I have been referred to another consultant at Guys hospital following my Polycythaemia vera (PV) diagnosis earlier this year. I’m seeing them in 2 weeks to talk about additional medication I may need for white blood cells elevated and platelets. Blood thinners doing the trick at the moment. They said they would send information about various medications to read up on but I’ve not received anything and have chased. Is there anything in particular I need to read about you can recommend?
Thank you for sharing your current situation with us. May i ask how you are you keeping?
In case it’s useful i have linked here to our website which talks specifically about different treatment options- Polycythaemia vera (PV) treatment and side effects | Blood Cancer UK. Your consultant will be able to explain if & when you may require a change in treatment and what this might mean for you.
Should you have any questions in preparation for your upcoming appointment, don’t hesitate to note them down and take them along.
Also if you would like to talk anything through in the meantime, please don’t hesitate to get in touch with us- 0808 2080 888.
Best Wishes, Lauran
Hi @Sam157 I cannot follow @LauranBloodCancerUK brilliant advice,
I am so pleased that you want to feel prepared and organised for your appointment in 2 weeks, I really feel that helps me too.
It must be so frustrating for you not to have received the information, despite chasing it.
Perhaps there are some general questions that you might want to ask, no matter the specifics of the different medications.
They might be administered in different ways, at different intervals and your practicalities might come into consideration., I don’t know.
Make sure you feel that you have covered everything you want to say and ask.
Look after yourself and please let us know how you get on
Hi @Sam157. I’m glad @LauranBloodCancerUK has been able to provide you with the information needed so you can get ready for your appointment and write down any questions you have. Don’t forget about the support line. Sometimes it’s so useful to talk things through. Please let us know how you get on
Hi Mel. Im no expert but Ive done a fair bit of reading around this due to being in a similar position.
If you don’t have any real side effects treatment should be limited to Venosection and 1/2 asprin.
In the US the Chemo based drugs are going out appart from the older patients as there is some thinking you dont want to be on them long term. More modern interferon drugs or Rubi are taking over.
Hope all goes well for you.
I’ve been diagnosed with Polycythaemia vera (PV) for just over two years now and been/tried a range of treatments. I too have been referred to guys hospital to work alongside my med team.
Happy to connect and share experiences
Take it easy
How are you @Sam157? Did you have your appointment?
Hi. Yes I had my appointment yesterday at Guys. They were very helpful and I have lots to read to decide on which of 3 options for future meds. Consultant is suggesting clinical trial may be my best option. Have to have another bone marrow biopsy at the end of the month. Hoping to get some decisions made before Christmas.
Sounds like you have a lot to think about. A lot to take in?
Oh @Sam157 it sounds as if you have had a positive appointment.
If you would like to talk to someone in the clinical trials team at Blood Cancer UK just contact the Blood Cancer UK support line.
Please let us know how you get on with your bone marrow biopsy and next appointment.
Perhaps you might want to write down all your fears, questions and practicalities for your next appointment.
Look after yourself
Hi Sam ive read around a bit but this article struck me. Basically makes me want to go down an Interferon route such as Besremi. Im not a doctor so listen to the staff at guys.
Thank you. Interesting reading.
I did really well on interferon
Sounds like you are now off of IFN. Do you think you fit longer term or persistent benefits?
Thanks for sharing
I had a pretty major heart attack which spooked them really. I don’t honestly believe it caused by meds or my cancer but it could’ve done. Though I’m still young and generally healthy otherwise, I just had my 4th vaccine 3 weeks after and was under some underlying stress at time so it really could’ve been anything.
They have moved me to hydroxycarbamide but I’m getting a second opinion on whether that is the best option.
I would be happy to return to interferon but then again now I’m on nothing and my results or only just on the rise.
I have an operation in next month, Doctor recommend to do daily exercise. I want Mediation, Can anybody tell me I will do or not.
Hi @happppy I believe in daily exercises and fresh air and walking help me as well.
There are some free handy hints and meditations on the Blood Caner UK website Blood cancer: mind and emotions | Blood Cancer UK
I cannot comment on your link as I do not have experience of it.
Look after yourself and please let us know how your operation goes.
Hi @Sam157 I just wondered how things have been going for you since your last post?
Take lots of care.
Hi @happppy I have been thinking of you and I just wondered how you are getting on?
Look after yourself