My husband is currently in hospital with bleeding from gastric varices. This is his 3rd admission in 6 weeks.
He was diagnosed with PV & ET 8 years ago and until this year has been stable. He had been taking hydroxicarbamide & propranalol. He has just started on ruxolitinib in place of the hydroxycarbamide, but has been told by his gastro consultant that the only option to stop the bleeding is to have his spleen removed. His haemo consultant thinks he should try the ruxolitinib first, but the gastro guy doesn't think he has that long before his varices rupture and they have no choice but to do an emergency splenectomy.
We've been reading so many different things on the web, all basically saying that a splenectomy is extremely high risk in patients with MPDs.
Can anyone give us advice on this? His spleen is classed as extremely large & he has also been suffering with anaemia this year.
Thanks
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Seashell226
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Hello My husband has MF for getting close to 5 years. He is taking ruxolitinib. Whist he has not had any bleeding his spleen enlarged to 29cm. He has had two sessions of radiation to shrink the spleen. Both were successful, but the spleen does grow back in time. The specialist has said that removal of his spleen is too dangerous, hence the ruxolitinib. I know others have had success with spleen shrinkage on that medication, but unfortunately it is not helping my husband in that regard. I hope things work out well for your husband.
I had an enlarged spleen, rugby ball sized, and suffered a major blood clot which blocked my portal and splenic veins. As a result I had emergency surgery in February 2009 and my spleen was removed. Afterwards I had several endoscopes to check for oesophageal varicies and although they are there I think they're only grade 1. PV was Dx in Sept 2009.
I take HU and propranolol. I guess it is a high risk op, but I'm still here and mine wasn't planned. I was a month in hospital and off work for quite some time, but I went back to work and am still there. Hope this helps
Hi, I have Pv and a very enlarged spleen. I also have gastric varices which I have had injected a few times. My hematologist prevented my spleen being removed. Whilst it may solve the varices issue it could then have a knock on effect on liver or kidneys. I am on rux but have seen little spleen shrinkage. There are other options which I was told could help with varices, beta blockers are one, and an operation called a shunt which I believe directs the blood flow and pressure away from the varices area.
Your medical professionals need to work as a team and not just worry about their are of expertise, the spleen is enlarged because it is doing a job, take that away and something else has to do that job
One of the first things I was told 3 years ago on diagnosis is don't let them take your spleen out. Obviously you cannot ignore advice from your medical team but pressure them to work together and consider all options before that.
Good luck, I hope you get things sorted soon, i presume your husband has had them injected?
Thanks for your reply. My husband is almost an identical case to yourself. He has had one of his varices glued under endoscopy 2 weeks ago, but they won't repeat this procedure again. He was told 8 years ago that his spleen shouldn't be removed due to it's size, so that's what's worrying us now. We've spoken to his gastroenterologist today who is saying there is no other option than a splenectomy. We're waiting to speak to the haematologist again and supposedly the two of them have discussed the case.
We feel we are being backed into a corner over this, but at the same time, based on the severity of the last bleed from the varices, it's a case of damned if we do and damned if we don't.
Is your GP involved? My experience in a similar situation was that they can be quite helpful in talking to the local consultants.
If, as u say, you are damned if u do and damned if you don't then I guess it's up to you to decide which risk you prefer: GP might help you weigh this up too.
Our experience with the GP surgery is that they've had no involvement with my husband's case over the years. He's always been seen at the hospital haematology department, who have then sent a letter to the GP to let them know what's going on.
We're going to speak to the haematologist again today to see if he can help us prevent the splenectomy or give us reassurance that it is a good idea. Our concern at the moment is that the gastroenterology department don't understand the added risks in patients with MPNs.
hello Seashell226, I am sorry to hear that your husband is having such a difficult time, splenectomy is hazardous but hopefully Ruxolitinib will work in reducing the spleen, but if it does not the splenectomy is still an option. I fully understand how worried you both must be, hopefully the Ruxolitinib will work. Best wishes, Maz
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