I am 67 years old and have had PV for 3 years. I am on 1,000 mg Hydroxyurea and one low dose aspirin per day.
I have to have laparoscopic surgery to remove my ovaries. I am very concerned because of the higher risks of blood clots or excessive bleeding that I have read about for people with PV during surgery.
I have consulted with my MPN Specialist and he wants my HCT to be 42 or under. He said I could take the Hydroxyurea up to the day of surgery, but I need to ask the surgeon about the low dose aspirin, which I still have to do. He also said that it is ok to have a phlebotomy if it is over 42, even a few days before surgery. I have a pre-op appointment scheduled with both my PCP and my hematologist/oncologist within a week of the surgery.
I feel like I have covered all the bases, but I am still nervous. Has anyone with PV had a similar surgery? Is there anything I have not thought of yet?
Thank you so much in advance for any additional information!
UPDATE: My surgery went fine. I stopped the low dose aspirin for 6 days before and 3 days afterwards. I only stopped the Hydroxyurea the night before and the night of the surgery because my hematologist was concerned about it affecting the healing process. My pre-op HCT was 40.7. A week after the surgery it was 44.9 but no phlebotomy was recommended. Two weeks after the surgery it was back down to 41.9. It all worked out!
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Sheena2020
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I have had four surgeries in the last several years, including heart and brain surgery. There have been no issues with thrombosis. Depending on the surgery, heparin may be administered post-surgery. This is something that the MPN Specialist should consult with the surgeon about. It is not reasonable to expect the surgeon to be familiar with the needs of MPN patients post-surgery.
The one consistent thing with all of these surgeries is reactive thrombocytosis. This can occur with most any significant surgery as a normal temporary reaction. It is not a big deal providing the PLT levels do not go so high as to increase risk of hemorrhage.
Thank you for your reply. I really appreciate your information and support. I am working on getting my MPN specialist and surgeon to consult. How long after surgery did you have another blood test to check your platelets?
When I was in the hospital following the brain surgery, it was every day. Other surgeries were typically within 2 weeks or so. Typically, after the body heals from the surgery, the PLT returns to baseline.
I have ET rather than PV but had laparoscopic surgery twice while on aspirin only and with a raised clotting risk due to my high platelets.
All went OK for me but the key, as you seem to be doing, is to get the surgeon and your haematologist talking, so they can agree a plan that balances both sides’ risks and concerns.
In my case I stopped aspirin 5 days before surgery and was then prescribed low molecular weight heparin immediately after surgery, to reduce the clotting risk - together with other measures such as flowtron socks and getting up and about as soon as possible after the operations, which is easier after laparoscopic surgery than a major abdominal incision.
It should all be manageable but definitely important to ensure the operation is carried out in the safest way possible.
Thank you for your reply. I really appreciate your information and support. I have also been told to stop the aspirin 5-7 days before surgery. I will look into getting flowtron or compression socks and I do plan to get up and move about asap. I have been told to do that before previous surgeries even though I didn't have PV yet!
I had a total hysterectomy in June by keyhole surgery. My bloods were stable and I wasn’t advised to miss any doses of hydroxycarbamide. I take a blood thinner for atrial fibrillation and was advised to miss 3 doses before surgery.
All went well and I only spent one night in hospital.
I have PV and have been taking Hydroxycarbamide for 16 years. Good luck with your surgery.
Thank you for your reply. I really appreciate your information and support. It is good to know that you also were told to continue taking the hydroxycarbamide, and also how long you have been taking it. I have been told to stop the aspirin 5-7 days before surgery.
I'm in the UK and male but have had both laparascopic and open surgery in the last 2 years for inguinal hernias. Like you I have PV, I'm on 1gm hydroxy daily along with 75mg aspirin daily. My haematology team (not the surgeon) advised stopping the aspirin about 1 week before surgery both times but I was ok to continue with the hydroxy so I am puzzled that your MPN specialist is asking you to ask the surgeon about the aspirin. I thought stopping aspirin about 1 week before surgery was common practice. Nothing was said about my HCT being below any particular number. I was told it was OK to resume the aspirin after surgery and nothing extra was prescribed. Maybe useful to check the aspirin issue again with your MPN specialist and as Hunter and AndyT suggest ask the MPN specialist to liaise with the surgeon (or vice versa). Good luck.
Thank you for your reply. I really appreciate your information and support. I am working on getting my MPN specialist and surgeon to consult. As you said, stopping aspirin about 1 week before surgery is common practice. I have been told by the surgeon to stop taking it 5-7 days before the surgery. I didn't know that from previous surgeries because I wasn't taking aspirin then.
Hi Sheena I have PV diagnosed in 2021 then straight after I had to have extended Right Laparoscopy also on Clopidogrel and Hydroxycarbamide Haemo had to get Platelets to operable level. Both Gastro Surgeon and Haemo Consultnants worked closely together fantastic team at Southend University Hospital. Hope all OK for you
Thank you for your reply. I really appreciate your information and support. I am working on getting my MPN specialist and surgeon to consult. What level platelets did you have to get to for the operation?
Hi Sheen sorry but mine was extended right hemicolectomy. Can't remember platelet levels but I had to double dose HU for month prior to operation. May I offer you my best wishes
I’m 65 and just had ovary and fallopian tube removed last month . I have ET , take 1000mg HU a day and aspirin 3x a week . I was told to stop both aspirin and HU 5 days prior to surgery . No excessive bleeding . It was a good quick recovery due to the surgery being laparoscopic. I was able to walk about quite well the next day which is good for moving our blood around . Wishing you all the best 🤞
I also have PV and I'm on Besremi, two 81-mg aspirin daily, and I take another NSAID Nabumetone 1000 mg twice daily,
I completely tore my right biceps longus tendon in my sleep and woke up with a sore, bulging blackish-purple on Valentine's Day this year. This scared me to death, thinking I had a thrombosis there, until the ER's U/S proved it was my biceps muscle.
This apparently happened because I fell hard twice in the previous 12 months, and had a large purple bruise [technically ecchymosis] from the rotator cuff tendons, that I had completely torn [unbeknownst to me at the time], which were eventually diagnosed by an MRI.
All of this is to say that, except for stopping my Nabumetone 2 weeks prior to my [attempted] Rotator Cuff Repair surgery this past May, I did not have to stop or change anything else, and even though the surgery was a complete bust [because the tendons had degenerated too much to reattach], I didn't have any bleeding or clotting problems associated with it.
I do agree with Hunter [which is almost always the case] that your MPD MD and Surgeon need to coordinate your care more closely than they seem to have been doing.
Best of everything [luck, etc.]and break a [figurative] leg,
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