I have ET-MPL 515L, and this is year 10 with the disease, and I am doing well thanks to Pegasys. I have been informed, due to arthritis, I need a total hip replacement. Those of us with MPN's are at increased risk of vertebrae and hip fractures, YIKES! In discussions with my Oncologist, he indicated since we have a bone marrow disease, there may exist an inherent susceptibility or weakness in our bones.
I am trying to get a second opinion from the cancer hospital where I receive treatment. I want to try to find out if my bones can take this surgery. I have no idea if that is even a possibility.
Have you had a total hip replacement? What was your experience, what precautions were taken?
Thanks so much!
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Indigo42916
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I had a THR five years ago due to a fall causing my problem. I have post ET MF but at the time it was just ET. I am good now exercising and walking 10 km daily. However I would advise you to ask them what they do re bleeding risks during the op- they told me they would recycle my own blood into me. After the op I was several hours in recovery as I bled and they had to give me some transfusions. If I was going through it again I would ask for more reassurance they would use my own blood. Also my iron and Haemoglobin was very low as a result and the Ortho team wanted to send me home on iron tablets but I got my haematology team to intervene and they organised iron infusion a couple of days after whilst still in hospital which made me feel much better than I had immediately after the op. The thing I was advised was to have the op in a hospital that had all the services available including hematology and they were right - I could get the help I needed quickly. Also liaise with your hematology team and make sure they and the orthopedics team have communicated and you are clear on preparation e.g. when to come off meds and how . It took me longer than I expected to recover but I think maybe I had unrealistic expectations of being bionic woman! Best of luck.
Thanks so much for your response, and great suggestions. My concern is will the surgeon know what to do with any complication. I have informed the MPN treatment team (I do see a specialist) and waiting to hear about their consultation. Getting off interferon, seems to be one of the surgeon's wishes, not sure why.
Glad you got through it and can exercise, as you wish.
hi Indigo. I’ve had ET for 18 years (now 64). Since then I’ve had 3 hip replacements (2 plus a revision). I was born with a mild hip dysplasia, so arthritis set in early. So far I’m only treated with aspirin for my ET. Ideally get your Orthopaedic surgeon to talk with your MPN specialist.
hello Indigo, I have ET (diagnosed in 2003) and have been taking Hydroxycarbamide for 8 years, and also a daily aspirin. I had a total hip replacement in May last year, such a difference now, no more pain! I would advise that you ensure that all the hospital teams (your haematologist and orthopaedic surgeon) talk to each other about the operation and your ET and medications, right from my first appointment with the orthopaedic surgeon, my ET and medications and my pre-op and post-op recovery were discussed and then followed up with my haematologist, in fact they had communicated with each other before my first appointment.
Both teams ensured that I had clear instructions pre and post-op regarding my Hydroxycarbamide and aspirin, and other blood thinners I needed to take for a couple of weeks after the op. Your orthopaedic surgeon and your haematologist should liaise with each other to advise you about your meds, pre and post-op, and advise you accordingly as to whether or not you need to make any adjustments, and whether or not you will need any blood thinners post-op. The advice I was given about stopping my Hydroxycarbamide and continuing my aspirin was specific to me, so not necessarily the right thing for someone else.
And also make sure that everyone in the hospital knows about your ET and meds, it was very clear on my notes and all the nurses on the ward, the anaesthetist and the team in the post-op recovery ward were all aware and discussed it with me, which was very reassuring.
Post-op recovery for me was fine and went very well, I was up and out of bed a few hours after the op, and walking on crutches the next morning and back home in the afternoon. Make sure you follow the advice you are given about post-op recovery, and do the exercises, they really do help such a lot. I was amazed after the op that I no longer had any pain in my hip, oh the joy, the relief really is immediate, I did have some pain and tenderness, but that was from the op and was expected, but good pain relief helped with that.
For me it was a very good experience, with a fantastic outcome, no more pain, and I hope that if you do go ahead, that it will be the same for you.
Thanks so much for your detailed response. Glad your recovery went well. My doctors are in different systems (I'm in the US) so that is one of the challenges. This will be my first surgery, since my diagnosis, so it is the unknowns that make this especially challenging.
Glad your pain has resolved, and thanks for all you do here on our behalf.
I had a hip replacement about 1.5 years ago. I have had PV for about 3 years. My oncologist/hemotologist was fine with me having hip surgery but I haven’t had the condition as long as you have. I am 65.
Hello Indigo. I had a total hip replacement a year ago December. Before my surgery my hematologist wanted me to get my platelets below 400 so he upped my hydrea to daily. He’s usually fine with them below 600. That worked and the procedure was glitch free.
I’m 78 and have ET. So glad I did it. No pain now and like Mazcd says, do your exercises and you will be delighted with results. I did take blood thinners for two weeks after surgery. I walk now 5-6 miles a day with my dogs and can put on my socks again and cut my toe nails! The joys of little things. Good luck!!!
Thanks for your reply! Fortunately, my platelets are in range because of Pegasys. Yes socks are indeed challenging. I had no idea my hip would not rotate, once the arthritis got worse. Truly, it's the little things we so often take for granted. I look forward to long walks with my dog too!
I asked the question at the last London conference. Prof Harrison replied that it is possible in a big centre wher hemo and ortho work well together. I need a new hip too and have MF
Thanks for your reply. I am trying now to get a consult with the Ortho department where my MPN specialist is. The healthcare system is providing me with many opportunities to practice patience!
Hope you can get some resolution on your hip soon.
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