MF with falling Hb: what drugs to go to next?

[jane13]

Hi guys, I have MF, platelets fine, whites a bit high (23), Hb dropping, now 90. On 10mg x2 Jakafi a day, spleen expanding again and liver. Haematologist not sure what to do - back in 4 weeks after he has taken advice. Mentioned Interferon and both higher and lower doses of Jakafi.

Sorry about the similarity with my last post

Anyone been in a similar situation, esp trying Interferon with Jakafi?

Jane

[socrates_8]

Hey Jane13...

Not really sure what might be best, of course as I am just another patient here too...

However, I did talk by email to Dr Messa sometime back now, and he believes that combination therapies could prove most useful. Obviously, however, we are all a tad different with either slightly or greatly diverse sets of variables at play in each of us.

For instance, it is usually Jakafi (Ruxolitinib) that is employed for spleen reductions. However, you mentioned that both your Hb & Ht are down, and usually corresponds to causes of anaemia, and therefore less Oxygen in the blood causing greater levels of fatigue etc.

You also mention that your platelets are down, but you did not mention to what levels... And I was also curious to learn how long you have been diagnosed for, and how long is your history taking Ruxolitinib?

Nevertheles, it might be worth asking the question, (of your medical team), about a Jakafi reduced dose in combination with Pegasys'.

Pegasys' is also known to help bring about molecular reversals in some people, which might eventually alleviate some of the problems that people like us MFers can suffer from...(?)

However, as I said above, I am not a medical person at all, and therefore, much investigation is possibly required by you in order to find some answers...

Stay positive Jane, because I really do believe that cures for all sorts of cancer are really not very far away these days...

Best wishes Jane

Steve

(Sydney)

[Paul123456]

Jane

There are some interesting combo trials, Ruxo plus INF has had good results for MF.

onlinelibrary.wiley.com/doi...

Do you know your DIPPS score?

Best Paul

[jane13 in reply to Paul123456]

dipps high/med

[champ30]

Hi Jane,

I have MF(level 3),but also MDS -5q which is a good one to get if you're going to get it!

I was on Ruxolitinib for 7 months and HB dropped badly, transfusions every 6 weeks upon usually reaching 74.Neutrophils always low hence a lot of infection s.

This drug( unlike most people) didn't agree with me.

Last April my haematologist(who is great) prescribed Lenalidomide for me.Initially I was on 10 mg daily,and still at the end of a month needed Transfusion.However I seemed to improve and now take 5mg on alternate days.

I have much more energy as HB has been around 120 for4 months which is great for me.

I have blood test again in 1 week's time to check on levels and to get a new prescription.If ok I'll see my haemo after another 4 weeks.

However if my levels have fallen he'll want to see me.

I'm so lucky to have such a great doctor.

This may be of no help but who knows?

Take care Lynda

[Rachelthepotter in reply to champ30]

Hi Lynda

Were there any unwanted effects of the lenalidomide? I can see that rux alone isn’t going to do it for me for much longer, and I’d welcome any first hand experience you have of how other drugs affected you.

Rachel

[champ30 in reply to Rachelthepotter]

Hi Rachel,

At first when I went on Lenalidomide I was disappointed that after 1month I needed a transfusion.However the specialist nurse did say this usually happens at the start of taking this drug.

I was amazed that my HB had gone up at 2nd month but neutrophils were too low to continue as these had to be 1.0.

So nothing for a week.At end of 2nd week still not high enough.Then following week they were high enough but I asked if I could stay off anything for 1 month as I seemed to be so well and our daughter and granddaughter were coming from NZ.This was agreed.

Unfortunately I contracted a chest infection and not good at all.

However upon next visit to Dr my bloods were dropping (not too much though)and I was advised to begin again Lenalidomide only 5mg on alternate days.I'm good at the moment.

Rachel,I also have low risk MDS and I believe this drug is beneficial for this mainly.

I do hope it continues being good for me,who knows?

We are all different.

Regards Lynda

[Rachelthepotter in reply to champ30]

Thanks, Lynda.

[jane13 in reply to champ30]

Thanks will ask about lenalodomide (wish these things had easier names!)

[westlieght in reply to champ30]

I was intressed to read your post I to have a great haematologist too! am transfusion dependent every 3-4months but getting closer As time gos on my HB only gos up to 107 and soon drops to 9.7 with in a six weeks !because I still work I have transfusions around hb9 to keep me going !do have fagtiue !Have iron build up last year had to go on meds Deferal infusion pump 5days over 12hours to rid the iron it worked took months ! We are all different but have one thing in common MF ! Best wishes

[champ30 in reply to westlieght]

I really don't understand what's happening to me as bloods are so good.I've even questioned whether I was diagnosed correctly!! I am ATM living a pretty normal life and long may that continue.

However at the back of my mind I Know I have this awful cancer MF level 3.I am so grateful to our haematology unit and the care I receive.

I am a different person now compared to a year ago, when I felt awful most of the time.

Thanks everyone for your shares.

Kind Regards Lynda

[babbittybumble]

Hello jane I cannot offer any medical advice but so hope they can find some medication to help you soon.Bye Gill

[Wyebird]

So sorry Jane I can’t help. I do hope someone can x

[Rachelthepotter]

Hi Jane13

I have MF, and been on rux for 18 months now, plus EPO to help the anaemia. My hb dropped when I started rux, ( as is usual) and then slowly went up a bit. But not all the way. Hence tbe EPO. Which , akthough it does keep my blood counts looking normal , just doesn't give me the same feeling of normality as each of the 3 transfusions I’ve had.

Can’t remember if you've had transfusions or not. Might be worth trying. Downside is making a possible SCT in future less likely to be effective.

Pegasys is being used with rux in trials , with some good results, but I’ve not tried it.

You cold have a browse though the nccn guidelines and see if they add anything.

nccn.org/patients/guideline...

I feel for you: I hope you and your haem find some combination of drugs/EPO/trsnsfusions that gives you a bettter quality of life.

Rachel

[jane13 in reply to Rachelthepotter]

thanks for your help

Have not yet had a transfusion. So far am sticking to my view that I don't want a SCT (outcomes uncertain, logistics tricky, cowardice) but have to admit that my decision based on expectation that I would have a few more years with decent quality of life

Am concerned about complications with spleen enlarging again so rather inclined to up the jakafi dose if I can find some combination of drug/transfusion that improves my Hb. Were yr transfusions whole blood or just red cells?

Jane

[Rachelthepotter]

Dear Jane

I’ve no idea if my transfusions were whole blood or just red cells: isn’t that a sad thing to have to say. Whatever Guy’s usually does. Not brilliant communications going on there. I’m assuming it was whole blood.

I too decided that I wouldn't push for access to SCT. I was miffed that I was told firmly that I wasn't going to even be considered for one, on account of my age ( then 68) and lack of siblings, but I think that the chances of my life quality being actually enhanced by a SCT are very low. And I don't want a longer, grottier life .

So for me, I’d rather have transfusions ( of whatever) : especially if it means that you can tolerate a higher dose of rux that will enable you to get your spleen under control.

Happy to chat .

Rachel