Erythropoietin injections. Immature cells.

[Fika500]

Hello. Has anyone had erythropoietin injections? If so, what can you tell us about benefits/side effects. My husband’s hgb is going down and his consultant mentioned these injections as a possible treatment. He has post PV Myelofibrosis. On Ruxolitinib for a year but haematologist does not think the lowering hgb is due to Rux. His letter says he has ‘a few’ immature cells which they’ll keep a close eye on. I fear that means progression?? Possibility of AML? I think it depends on percentage of immature cells?I’m anxious and would appreciate feed-back.

[SP-2008]

Sorry to hear this Joe500, I can’t help with your question but I’m sure someone will come up with some suggestions. I have post ET MF since diagnosed this month so I’m on a new learning journey. I hope all goes favourably for you. Keep us informed, Paul

[Fika500 in reply to SP-2008]

Thank you. My husband has had post PV myelofibrosis for four years now. He has been generally well except for fatigue,( enlarged spleen-23cm- & bruising causing no problems) and gout ( which is well controlled with Allopurinol) . Fatigue and spleen improved with Ruxolitinib, which he has been taking for a year.

His elder brother developed PV in his seventies and then Myelofibrosis which unfortunately progressed to AML in his eighties when he passed away. As is often said , everyone is different. My husband had PV for 28 years and progression was slow in contrast to his brother. The only PV treatment my husband needed was venesection, His haematologist hoped the Myelofibrosis progression would be slow too.

[SP-2008 in reply to Fika500]

Your husband did so well to cope with PV for 28 years, I guess he may of looked after his health well? The move to MF is one we all worry about, but it appears there are new medications coming very soon. What level scarring does your husband have ? I only ask as I’m level 2 scarring and my haem is asking me to take Int alpha, but I’m wondering if I should start on Ruxolitnib. I’m also sorry to hear your husband lost a brother to AML. He must have also been a fighter living into his 80. All the best Paul

[Fika500 in reply to SP-2008]

Thank you for your kind words. I think my husband was pretty fit and he still does well-he’s 78 and walked six miles last week. We don’t know about scarring as he hasn’t had another bomb since his initial diagnosis of PV -his consultant said it would not benefit him. I may ask at next appointment whether this is still the case. Ruxolitinib has certainly helped with his fatigue. I wish you all the best and hope you get the treatment which best suits you.

[Paul123456]

So sorry your husband’s hgb going down.

I think this is what you are referring to

‘A key element is whether the cells look mature (like normal blood cells) or immature (lacking features of normal blood cells). The most immature cells are called myeloblasts (or blasts for short).

The percentage of blasts in the bone marrow or blood is particularly important. Having at least 20% blasts in the marrow or blood is generally required for a diagnosis of AML. It can also be diagnosed if the blasts are found (using another test) to have a chromosome change that occurs only in a specific type of AML, even if the blast percentage doesn’t reach 20%. Sometimes the blasts look like normal immature cells in the bone marrow. But in normal bone marrow, the blast count is 5% or less.’

Do you know his % of blasts?

Is your Hem a MPN Specialist? If not, it might be worth asking whether he can refer your husband to someone with access to latest trials. I posted earlier about MF and combo therapies, hopefully, if your husband is progressing at an alarming rate, there may be something cutting edge that can help him.

Best wishes Paul

[Fika500 in reply to Paul123456]

Thank you so much Paul. This information is very helpful. His haematologist is an MPN specialist and I’m very happy with his care. Was planning to ask at next appointment about percentage of immature cells. It’s tricky as I want all the information but my husband does not and it seems unfair for him to be given information he may not want. I’m thinking of having a separate chat with the specialist nurse or even his haematologist.

[Paul123456 in reply to Fika500]

I fully understand your husband’s viewpoint, I was the same for about a year after dx.

There are two trains of thought.

1. Enjoy life and don’t worry about prognosis. Your Hem will sort out best treatment plan.

2. Do as much research as possible so that confident your treatment plan is the best for you.

I’ve now gone for the later since there are rarely straightforward treatment plans, it’s all about balancing possible reward (slowing progression) against possible risks (side effects and drug not working). I think this is a very tricky decision for our Hems to make for us. eg Interferons may slow progression for a subset of users but may be more poorly tolerated and cause depression or autoimmune problems for some. A significant number may have to discontinue, wasting time. (I’m on Pegasys and, so far, think it’s great).

Your husband sounds even further into the minefield! Thankfully there is lots going on in terms of possible treatments currently in trials.

The most important thing is that you have confidence in your Hem, that he is aware of your options and is willing to listen to your wishes. Sounds like you have this.

Best wishes Paul

[Fika500 in reply to Paul123456]

Thank you so much Paul. I wish you well and hope very much that Pegasys contiunues to help you.

[Rachelthepotter]

Hi. I have MF, and started epo injections once a week after being on rux for 6 months and getting anaemic,and fatigued . The erythropoetin helps with the anaemia and hence the fatigue up to point, and means that I’m less likely to need blood transfusions . The epo needs to be kept refrigerated, which is a hassle when travelling. Apart from that I’ve not experienced any problems, and no side effects.

Its the same stuff that endurance athletes have used illicitly to improve their performance by increasing the oxygen carrying capacity of their blood - Lance Armstrong, the cyclist, most famously.

Hope this helps

Rachel

PS I’ve recently changed hospitals and am about go try a different formulation that will only need injecting every 4 weeks to make life easier when I’m away from home.

[Fika500 in reply to Rachelthepotter]

Thank you Rachel -that’s most encouraging. I hope the new one’s work well for you.

[skipperL]

I am on weekly Epo injections, self administered. My HB had plunged necessitating transfusions. I cannot discern any side effects other than occasional bruising at the injection site, although I still suffer from the most debilitating fatigue. My HB rose to 128, which was good, but my latest blood tests show a drop down to 101 - I hope that this does not mean the Epo has stopped working. I will be seeing my Haemo on the 17th so I shall find out.

SkipperL

[Fika500 in reply to skipperL]

Thank you. I hope all goes well for you on 17th.

[Rachelthepotter in reply to skipperL]

Hi Skipperl

Did you continue to be fatigued on EPO even tho your hgb was 128?

I find that my hgb level doesn't neccessarily match my fatigue - I still feel wiped out on a hgb of 117.

Regards

Rachel

[skipperL in reply to Rachelthepotter]

Hi Rachel - yes, I find there is no correlation between a high HB count and fatigue. Even though my counts have been “normal” I have had the most awful summer - too exhausted to even to get my paints out - and feeling overheated as well. It’s all very depressing......... I hope my haemo has some suggestions.......

Best wishes

[Rachelthepotter in reply to skipperL]

Interesting, isn’t it. So I wonder what it is in a blood transfusion that, as well as upping the hgb , improves the fatigue. Or maybe its that our own red blood cells just aren’t functiong well i did notice that after a blood transfusion the oxygen sats rose to 99, when they had been around 95.

[skipperL in reply to Rachelthepotter]

Apparently my red cells are small and get destroyed quickly. If I have a blood transfusion I feel really good for about three weeks or so - when I asked my haemo why the effects didn’t last longer he said that the blood you receive isn’t all new, some are cells that are old and on their way out! He seems reluctant to give me frequent transfusions - and as the Epo seemed to be working they weren’t necessary - we shall see what happens next.

[beetle]

I have had two attempts at epo injections. I was getting quite blasé about injecting myself! After a while both times I had to stop because of increased spleen pain. I am transfusion dependent now and my spleen is enlarging again despite Ruxolitinib and my haematologist is reluctant to try epo again because of my spleen. I hope you don’t experience the same complication. It seems others are doing well on it

[Fika500 in reply to beetle]

I’m sorry to hear the epo didn’t work for you. It is helpful to know that people react in varying ways to the treatment. I hope the transfusions are not too daunting for you and I wish you well.

[beetle in reply to Fika500]

Thank you. I have transfusions every three weeks at the moment but I’m hoping to get into the pacritinib trial and hopefully reduce the frequency. I wish you well too