Myelophibrosis and Ruxo

[markokrist]

Hi!

My mom has MF for 8 years and all of them is on Ruxo, but lately she started to feel worse-spleen has grown bigger (24cm), and she has huge pain,which is moving from left under rib to the right, she has problems to get up from the bed and to move. Doctor decided to put her on Hydrea as well, on which she is already for 4 months, bit there is still no improvement. I feel so desperate, because she suffers big pain and I don`t know how to help,as doctor said,that any kind of pain killers is not recommended. Has anyone of you had such pain form enlarged spleen? How can I help her? Or it`s just time and we need to wait if Hydrea with Ruxo will work? How long it could take?

Thanks, Kristina

[Rachelthepotter]

Hi Kristina

Your mom is lucky to have a daughter who is taking such good care of her ,and researching MF treatments for her. . You don’t say what the dose of ruxolitinib is that your mom is taking - but sadly many people do loose their response to rux eventually. Haven’t heard of rux plus hydrea being used. Rux plus pegylated interferon is being trialed with good results.

Pain relief matters. If you can get yr doctor to make a referral to a pain specialist/ palliative care doctor that would be helpful, but there are pain medications that can be used for most things. I have MF, and I have to avoid any pain killers that might make me bleed - like asprin or ibuprofen - but paracetamol is OK for me , and so are codeine based meds - tho I haven’t had to take much pain relief yet. There may be other conditions that your mom has that complicate matters. No one need suffer untreated pain .

[Dodders]

Hi Kristina

Sorry to hear about your mom; it must be distressing for you both. I am a bit surprised that there isn't any kind of suitable pain relief. Maybe you need to push on that? Whilst splenectomy is rarely considered an option, especially here in the UK, if her splenomegaly is causing your mom real pain and distress it might be something to be looked at? I wish I could be of more help.

[katiewalsh]

Hi Kristina, Your Mom is fortunate to have such a caring daughter. I’m sure this must be stressful for you. Do you know if your Mom’s doctor is a specialist in MPN cancers? That’s the most important thing.

Can you tell me where you live? If it’s England, I would try and have your Mom be referred to Dr Claire Harrison in London at Guy’s & St Thomas’ Hospital. She’s one of the top specialists in the world. It’s very important that your a Mom see a specialist because this cancer and the best treatments aren’t well known by non-specialists. A doctor might find that her pain is from an enlarged spleen. There is a medication used that has been successful for many patients on here for making their spleen get smaller. That helps their pain. If you aren’t from England, there are other specialists in many countries. MAZcd, who runs this forum could give you information on specialists & patients from other countries often know good specialists. Katie

[markokrist in reply to katiewalsh]

Thanks,Katie! Unfortunately we live in Latvia,and her doctor is hemotoligict,and one of two doctors in our country,who knows at least something about MF😞 all the rest is guessing and experimenting.

[katiewalsh in reply to markokrist]

Hi. I thought your situation might be as you describe it. Do you have access to a computer? If you do have access to a computer and if you’re comfortable using it, search for nccn.org>mpn which is the website of the National Comprehensive Cancer Network in the United States and has a PDF. If you don’t have access or aren’t comfortable using a computer, please find someone to help you. This organization/website has extremely good, expert information on Myelofibrosis: symptoms, complications & treatments. The information on this website may be more than your doctor currently knows and might help your doctor treat your mother. One thing that could be an issue is whether the drugs used in many countries like mine & England are available to your mother in the Ukraine. There is also material on that site on ET & PV so you’ll need to read past that to get to the section on Myelofibrosis. A CT scan will show if it’s her spleen that is really enlarged and causing pain. Last, I don’t know if traveling to another country to see an MPN specialist is possible but if you can, MAZcd, the administrator of this forum could tell you where the closest specialist is to you. Then your mom could see that specialist & return home and maybe have her doctor at home coordinate her care with that expert. Please let us know how you make out. Fingers crossed that things get better. All the best to you. Katie

[katiewalsh in reply to katiewalsh]

Kristina, I typed in the entire web address but it deleted all but part of it. First you type in and after that is when you type in nccn.org.>mpn. I hope this all comes through doing it this way. Katie

[markokrist in reply to katiewalsh]

Thank you Katie so,so much!!!! I will definitely check that web site!

All the best for you!

[katiewalsh in reply to markokrist]

You’re welcome & I apologize for saying Ukraine and not Latvia. Please keep in touch and let us know how things go.

[cabinetmaker]

Hi Kristina,

I was admitted to hospital earlier this year and with symptoms very similar to your mother’s. Eventually I was given a CT scan that showed a very enlarged spleen and liver, caused by a blood clot that completely blocked the Portal vein, Splenic vein and Superior Mesenteric vein. This also resulted in the early stages of Mesenteric Ischemia, liver failure and Sepsis. Eventually my blood tests showed that I was JAK2 positive and a diagnosis of PV was given. After several months of injecting myself with Heprin (80mgs twice a day), I’ve now transitioned to Warfarin. This should prevent more clots from forming and allow the body to reabsorb the many small clots. Apparently the massive clot will be permanent but the blood vessels will eventually reroute around it. The body is an amazing thing!

Not sure if this will be of any help at all, but if your mother has not had an abdominal CT scan it may be a good idea to have one. Also, the doctors gave me a lot of Co-codamol and morphine to deal with the pain.

My heart goes out to you and your mother, I know how much pain she could be in and hope she can find some relief from it.

Best wishes,

Joe

[markokrist in reply to cabinetmaker]

Thanks Joe for information! My mom just had ultrasound yesterday,not CT scan.Doctors visit is after a month,so will ask the doctor to make CT.

All the best for you!

[cabinetmaker in reply to markokrist]

Hi Kristina,

When I first went to hospital they gave me an ultrasound, it was unable to show any detail as my abdomen was full of gas from the sepsis and ischemia. As a result of that, I was given buscopan and ibuprofen, drugs that really just made things worse. I went back to my GP a few days later and he told me to go straight to A & E again. This time they started with an MRI scan, which did show enough detail to ring some alarm bells and get me admitted, but it was definitely the CT scan that showed the severity of the clotting in detail and got me put on the critical list. So hold out for the CT scan. If your Mom has a similar condition, it’s probably what’s needed for the doctors to see the full detail of what’s going on.

Wishing you and your Mom all the best,

Joe