kidney removable

I need to have my kidney removed urologist said it would be four hours surgery using keyhole surgery really scared with risk of bleeding and blood clots I have polycythanemia vera any advice please

[Ebot]

Hi there. Plenty of people on this Forum will have had surgery both major and minor. The key thing is to get your haematologist and your urologist talking!

Depending on your blood counts your haematologist may need to step up treatment to lower your HCT / platelets before surgery and will certainly have advice for your urologist to get you through the procedure safely. You may need to alter your medication / dosage in the run up to the procedure

My own experience when I’ve needed some relatively minor investigations was to try and get the numbers under better control (they were on the wild side on one occasion), to ensure I was kept very well hydrated throughout the process and to treat me as a ‘high risk’ patient even for something very minimal. I also stopped aspirin in the week before.

Of course everyone is different. So definitely have that conversation with your MPN team. Wishing you well.

[Hidden in reply to Ebot]

thank you

[DeKa]

I can only share my brother’s experience. He had a spleen embolisation procedure that has made him very unwell in a hospital that told him later on that PV was not a form of blood cancer. Our biggest regret is that we didn’t get a second opinion before the procedure. As has been said before, get involvement from PV experts and a second opinion if you have any doubts. I wish we had done that. We are doing it now, but it’s too late for optimal outcomes. Good luck.

[DJK12]

Have you discussed this with your haematologist? I have postET MF and can only tell you from my experience having a hysterectomy that the surgeon and haematologist worked closely together. I had a blood transfusion before surgery and as it wasn't taking place at the hospital I'm treated at my notes were available to the team and a haematologist from that hospital came to see me before surgery. After surgery I had heparin injections to stop clots and came home with them to do myself (very easy they are pre-loaded) possibly for about 10 days. I can't remember now but I presume my daily aspirin was stopped beforehand - if you are taking them this again is something to discuss with your haematologist. Good luck - I felt all care had been taken and I had a good outcome.

[Hidden in reply to DJK12]

thank u I have

[DJK12 in reply to Hidden]

I forgot to add the surgeon had an extra consultant surgeon with him in additional to the usual team. My blood problems were being taken very seriously which was reassuring. This was in the UK.

[hunter5582]

I will add the the same advice the other have given. It is critical to have a MPN Specialist consult directly with the surgeon for any surgery. Iit is also critical for the MPN Specialist to consult with you so that you can ensure that all of the MPN Specialist's recommendations are followed. You cannot assume that this will happen automatically. it is also critical that you have an effective advocate with you for the surgery. Your advocate needs to have all of the MPN Specialist recommendations in writing as well as any instructions from you, including an advance directive if you have one.

I have had four surgeries in the last several years, including heart and brain surgery. I always have the MPN Specialist consult with the surgeon and me regarding any special considerations due to the PV. I also have an arrythmia, so my cardiologist also consults. I do have an advanced directive that is always provided to the surgeon/hospital. Whoever is my advocate (usually one of my Medical POAs) also has copies of this as well as specific instructions I write for any major procedure.

The typical consideration regarding the PV are pretty consistent. The primary risk is for thrombosis and it is common for heparin to be administered post-surgically. If you also have thrombocytosis, then there is also additional risk of hemorrhage. Many surgical teams are not aware of this additional risk and may not know how to treat it optimally. Your MPN Specialist's input on this is very important if this is relevant.

The common tests prior to the surgery will include a CBC, CMP, prothrombin times, and possibly a von Willebrand Panel. There will likely be other tests due to the kidney issues.

Wishing you all the best with the surgery.

[Hidden in reply to hunter5582]

thank you

[Bikecrazy in reply to hunter5582]

I have PV w/Jak2. Hip surgery scheduled for October. Hematologist is putting me on Besremi pre-surgery to help with potential clotting. Have been on a 'watch and wait' since diagnosed in 2022. No meds, no phlebotomies. Does this sound like a standard or frequent course of action for surgeries? I'm a little apprehensive about starting Besremi and a surgery to follow so quickly.

[hunter5582 in reply to Bikecrazy]

The answer would be an "it depends" on your situation.

What matters with PV is to control the erythrocytosis no matter how you do it. The downside to using phlebotomy to control the erythrocytosis is that you then head into the surgery severely iron deficient. That carries its own risks, including reactive thombocytosis. That is exactly what happened to me prior to the brain surgery. I was over-phlebotomized and so severly iron deficient that I became anemic (HCT = 32%). I actually had to go on iron supplements prior to the surgery despite having PV.

The other factors to consider are your level of thombocytosis (if evident, and your history of thrombosis. Note that elevation in thrombocytosis also increases your risk of hemorrhage. You will likely be receiving heparin post-surgery to prevent thrombosis,, which prevent thrombosis but increases risk of hemorrhage.

I would not hesitate to start on Besremi in the situation you describe. You will have to make this decision for yourself in consultation with your MPN care team. It is your treatment goals, risk tolerance and treatment preferences that need to drive the decision.

Wishing you all the best.

[Bikecrazy in reply to hunter5582]

Thanks for your thoughts and sharing your experiences. No thrombosis for me. Platelets in low 300's. I will take the Besremi so I can have the surgery and will make notes of any questions I may have for my care team prior to surgery day. Hoping I can adjust to the drug before surgery time.

[hunter5582 in reply to Bikecrazy]

Good news that your PLT are WNL. You may do well on a low dose of Besremi. I did have both erythrocytosis and thrombocytosis. I am maintaining a complete hematologic response on only 150mcg Besremi. I am a proponent of only taking as much as you need for a CHR. The increased risk of adverse reactions is not justified at doses higher than needed to achieve control of HCT and PLT.

All the best.

[Bikecrazy in reply to hunter5582]

Hunter, my insurance (Cigna) seems to be balking over Besremi as my first med for PV. Wondering it they are planning to push me to Pegasys. Were you on Pegasys initially before Besremi? If so, thoughts on the differences (pros, cons)?

[hunter5582 in reply to Bikecrazy]

I was on Pegasys before Besremi. I did not react differently to the two forms of interferon regarding efficacy or side effects. Theoretically, the monopegylated formulation of Besremi is better. I expect like all medications, there will be considerable individual variation in how we respond.

Cigna initially denied my request too. This was when it had just been FDA approved and before it was on the formulary. It was quite a battle to get it approved. I had to file my own appeal. The second time they denied it initially, but the doc was able to handle the appeal this time. It was easier since it is now on the formulary for my Cigna Part D plan.

In dealing with insurance plans, it is important to understand that "NO" does not mean "NO". The initial denial for an expensive medication like Besremi is automatic. It is intended to serve a barrier to expensive care. It means that there is a path to be followed to access the care. The way it typically works with Cigna is that the PXDX computer system automatically rejected the request. A Cigna doctor signed off on the rejection without ever looking at it. Now the appeal process has to begin.

The first step of for the authorization to go to a Medical Services Review, sometimes referred to as a Peer-to-Peer review, This is where your doctor actually reviews your case with a doctor at Cigna. It will help that Besremi is now recognized as a first-line treatment option for PV in the NCCN guidelines. It will also help if Besremi is on the formulary for your specific plan. If it is, it will be a high-tier medication that requires specific steps to get authorized.

Hydroxyurea and Pegasys are both used off-label for PV in the USA. HU is in the NCCN guidelines despite not having a FDA label. Pegasys is not, though it is in common use for PV. Cigna would likely prefer HU since it is so cheap (500 mg 60 caps: $25.00). Compare to the price of Pegasys 1(80 mcg/0.5 mL (1 kit, 4 syringes): $4,177.00) or Besremi (2 500mcg syringes: $15,256). It is common for insurors to require you to fail on HU before authorizing a more expensive drug unless there are contraindications for HU in your case.

If Besremi is on your formulary, then there is a path to authorization. You have to follow the path to get authorization. There should also be a path for authorization of a non-formulary medication. This is a more difficult path. You can request a copy of the Plan Rules (AKA Plan Guidelines) for your plan. This can help to guide the appeal process. The appeal is not over if your doctor is unable to get the Besremi authorized. It just needs to move to the next level. You can file your own appeal. You can usually request a third-party review. You can contact the Insurance Commissioner in your State and request assistance if it appears Cigna is not following its own rules or is refusing to provide you with the information you request.

There is assistance available with the very complex authorization process. You can contact PharmaEssentia Source for assistance. pharmaessentiasource.com/hcp/

You can also hire a private Patient Advocate if you wish. These professionals assist patients with issues like insurance authorizations.

umbrahealthadvocacy.com/

aphadvocates.org/

Wishing you success moving forward.

[Bikecrazy in reply to hunter5582]

Thank you so much for all the information. Besremi is on my formulary as a level 5 speciality drug. Hopefully, my care team will be able to handle the paperwork and calls necessary to obtain approval.

[katiewalsh]

Hi. I have MF but still in proliferative stage. I made sure my surgery was coordinated with an MPN expert. They put me on Herparin, a short-life anticoagulant to use while removing me from blood thinners. Because you have PV, they’d probably treat you differently. But I’ve had two surgeries and no problems. Good luck with your surgery. Katie

[Hidden in reply to katiewalsh]

thank u katiewalsh

[Ayla13]

Hi , I’ve had a tumor removed from my kidney in 2020 major surgery and not able to have laparoscopic due to the location of the tumor My platelets were 1 million ( didn’t know I had ET at the time ) but doctor knew I had high platelets from preop bloodwork results . They gave me a heparin injection after the surgery for one day only . A few months later I was diagnosed with ET and put on hydrea and aspirin . Next month I’m going for ovarian tumor removal and both my hematologist/ oncologist and Gynecologist said to stop taking hydrea and aspirin 5 days prior to surgery . And that they will once again give me a blood thinner shot. And to resume taking aspirin and hydrea the next day after surgery . Hope this helps . Good luck 🤞

[Hidden in reply to Ayla13]

thanks for ur reply and good luck with ur surgery

[RCBr]

Hi x I have PV, and required a full hysterectomy back in June. They needed to do a midline incision , as I wasn't suitable for keyhole surgery. I was really worried about it, and I think my gynae team were too. I went ahead with the op in the end after my haematologist liaised by email with the gynae team...the op went really well, with no problems with major blood loss.After checking with my haemalogist, I continued to administer my pegasys interferon too.

I was also prescribed Apixaban 2.5 Bd for a month post op to reduce the risk of clots post op....and still no bleeding x

Obviously we're all different, but I hope this gives you a little reassurance.

Good luck with your procedure. Wishing you all the best x

Rachel x

[Merry6]

I have ET Jak2 and had my kidney removed 5 years ago. I was on Apixaban (Eliquis) blood thinner due to a cerebral venous thrombosis the previous year. I stopped that a few days before surgery and had heparin injection up to and for three days after. My haematologist and surgeon consulted before surgery. Unfortunately where I live in Australia there are no MPN specialists but all went well. Kidney and adrenal removed successfully and no metastatic cancer. Woop! Best of luck with it. Merry

[conno61]

I've had my left kidney removed due to kidney cancer 5yrs ago. Mine was open surgery, so it took a lot longer recovery wise . Keyhole surgery is a lot easier and faster to recover from. You don't notice any difference only having one kidney, make sure you drink lots of water and get the gfr on your remaining kidney working better .I have ET ,try not to worry, everything will be fine.