Posted , 8 users are following.
Diagnosed with PRV five years ago, I now have an enlarged spleen. Possibly about to start chemo treatment following a bone marrow biopsy/aspiration I wonder how long the treatment will go on?
0 likes, 25 replies
Posted , 8 users are following.
Diagnosed with PRV five years ago, I now have an enlarged spleen. Possibly about to start chemo treatment following a bone marrow biopsy/aspiration I wonder how long the treatment will go on?
0 likes, 25 replies
We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
leticia92303 felicity09575
Posted
I have a question how did you know something was wrong with it? Did you have any pain, strange feeling or was it a basic exam? I went to my primary doctor because I would have a cuppa coffee in the morning and feel full like it is sitting in my throat, she said that it seemed slightly enlarged and wanted me to see my hemo\ oncologist....well she dismissed me and now I'm waiting to have an ultrasound a month later....please give me some insight
felicity09575 leticia92303
Posted
leticia92303 felicity09575
Posted
felicity09575 leticia92303
Posted
Sorry Leticia, I can't remember
felicity09575 leticia92303
Posted
I'm sorry I've not been able to respond to your question before now Leticia. But yes, annoyingly there was only a little pain when the spleen was palpated but as I walked away from the consultant's office it hit me!
Zapamania felicity09575
Posted
Hi Felicity have you been having phlebotomies and taking low dose aspirin until now? Everyone here that has Pv has a different path. Some people stay with phlebotomies and aspirin forever. Others need meds either Hydroxyurea, interfuron or Jakafi. I believe once you are put on meds, you stay on them. There is no cure so the meds are to slow down the progression of the disease. I've been dx with Pv for 4 years and just started Jakafi 4 months ago. I feel much better. No more fatigue or itching. Good luck with your path. Zap
felicity09575 Zapamania
Posted
Hi Zapmania, Yes I've had phlebotomies and warfarin (if have AF). I like the hope that there will be no more fatigue or itching and hopefully no more pain and discomfort from the spleen enlargement.
Zapamania felicity09575
Posted
Hi Felicity if your dr prescribes HU don't be afraid of it. Most people do very well on it. I couldn't tolerate it. I had so much joint pain I couldn't get out of bed by the 5th day. So the dr then prescribed Jakafi. Much more tolerable for me and the itch and fatigue are gone. My spleen was never enlarged. There are pros and cons to these drugs like everything else. You might do very well on HU as many people on this line do. Hopefully you'll get relief. Keep us posted on your condition. Zap
ItchyChris felicity09575
Posted
felicity09575 ItchyChris
Posted
sarah30079 felicity09575
Posted
Zapamania sarah30079
Posted
felicity09575 sarah30079
Posted
Hi Sarah, I've had two biopsies and can honeslty say that although it's not an experience I'd choose, it was bearable with deep local anaesthetic, gas and air, the kind hand hold of a nursing assistant and calm efficiency of the haemo consultant. I am waiting for the result of the latest biopsy.
Zapamania felicity09575
Posted
Hi Felicity how long does it take to get bmb results? I'm getting my first next week and I'm just wondering. Zap
felicity09575 Zapamania
Posted
Hi Zap, I expected my biopsy results 3 weeks ago but was told they weren't available when I saw my consultant. So I'm still waiting...
ItchyChris felicity09575
Posted
ItchyChris
Join this discussion or start a new one?
New discussion Reply