Some results, at last

[lizzziep]

I had some blood sent for Next Generation Sequencing back in March, I’ve been waiting for the results. Consultant phoned this afternoon, he says I am now post ET MF or words to that effect!

My platelets are currently 559, I’m on one capsule of Anagrelide twice a day. I was extremely anaemic and after various treatments failed to increase hg I’ve been on EPO injections for 8 weeks once a week and it’s gradually creeping up, now 112.

He is checking with a colleague to see if Ruxolitinib will be better for me. I’m going on holiday for a couple of weeks and will see him when I come back to discuss it, and to go through full results. The majority of my blood counts are in normal range, except

RBC 3.75

Haematocrit O.31

RDW 16.7

I’d appreciate anyone else’s experience with Rux, any side effects etc.

Thank you 😊

[chrissie1959]

My son in law has rux no prob 👌 hope you OK

[lizzziep in reply to chrissie1959]

Yes, I get far more trouble from my arthritis than the ET! 😁

[Cja1956]

Hi, Lizzziep, I am also post Et Mf, diagnosed 3 1/2 years ago. I was on jakafi aka Ruxo with my original hematologist , but when I changed to a specialist, she took me off of it because she felt it was lowering my hemoglobin too much. She put me back on hydroxyurea, but about a year ago I became very symptomatic and as of two weeks ago I’m now back on Ruxo. I feel so much better on it. I can’t believe what a difference it made. I wish she had started it earlier. It does tend to lower blood counts, but EPO should help balance that out.

Take care,

Cindy

[lizzziep in reply to Cja1956]

Thank you. He mentioned Rux yesterday but previously peg interferon. I’ll see what he says later this month.

[hunter5582]

Jakavi is indicated for treatment of MF. Like other cytoreductive medications (hydroxycarbamide, Interferons), it can lower RBCs, PLTs and WBCs. You would have to be monitored and possibly continue with treatments for anemia. EPO injections are one of the ways to treat anemia with MF and its treatments. There are other choices as well.

Momelotinib is in clinical trials for people with MF with anemia. It is a hopeful step forward.

Wishing you all the best

[mhos61]

Good to see you’re finally getting some answers.

Wishing you a well deserved holiday, and hope you come back fully recharged to face the next stage of your treatment. Xx

[lizzziep in reply to mhos61]

Thank you. It’s a “working” holiday. We’re dog sitting for our youngest son, however they live in a beautiful area in the South West so it’s really a free holiday for us and our dog! 😆

[mhos61 in reply to lizzziep]

Haha, a good trade! X

[socrates_8]

Hey Lizziep...

You RBCs are lower, as is Hct but you didn't mention Hgb (?) is that low also? Looks like you are somewhat anaemic...

Usually, having a NGS determines whether or not one has any other High Risk Mutations (HRMs)? Other than those "Driver" mutations that most of us know we have. I.e. JAK2, MPL & CALR etc.

When mine came back it was discovered I had ASXL1+, which is supposed to mean a poorer prognosis, but I am still here, still on this same old rollercoaster ride like the rest of us...

Ruxolitinib works for me, but I must work hard to keep the kgs off, (Diet & Exercise)

It reduced my slightly enlarged spleen, removed the brain fog, (mostly). However, & like HU, one can gain weight rather suddenly on Rux'.

However, it made managing my MPN somewhat easier than it used to be on HU...

Anyways, best wishes Lizzie...

Steve

(Sydney)

[lizzziep in reply to socrates_8]

Thank you. I am jak2 negative. My hg is now 112, it’s crept up from 90 with the EPO injections. I’m having a meeting to discuss treatment change later in the month. I was on hydroxy until I developed a reaction to it, been on Anagrelide for a few years. However the last thing I want is weight gain! I am already struggling to lose weight. I want to get it off to have knee replacements, but I seem to be in a vicious circle with medication like the pain killers causing increased weight ☹️

[socrates_8 in reply to lizzziep]

That's interesting Lizziep... (JAK2 neg)

If I were you, I would have asked to be tested for the other Drivers, (CALR & MPL).

However, the NGS should have picked up any other mutations that are present. If they have not, that may mean you are possibly "Unclassifiable or Triple Neg'"?

Do you have a Copy of the NGS Results?

If so, that report should reveal everything that they have found, or not, as the case maybe...

Either way, your MPN Specialist should be able to inform you of those complete results, when you have returned from your holidays...

... In the meantime, just try to forget about it and have a great holiday...

Best wishes Lizzie, & do let us know what you learn afterwards etc...

Steve

(Sydney)

[lizzziep in reply to socrates_8]

Thank you. It was a telephone consultation so not seen any paperwork. I’ve got a face to face appointment on 25th July so will be going armed with questions and will ask for a print out of the results.

[Orangeboykitty]

I was on Rux for a little over a year and especially in the beginning it lowered my immune system, so I got shingles followed by an eye infection. I also gained a bit of weight, not too much because I was really careful with food.

[lizzziep]

I’ve recently had the shingles vaccination so hopefully that will protect me a bit. It’s the weight gain I’m bothered about.

[socrates_8 in reply to lizzziep]

Usually, when one is taking Rux', they also commence a daily 'ant--viral' because the Immune system becomes so suppressed that infections can run rampant...

Valcyclovir 500mg d is what I am taking...

Steve

[ainslie]

if you go on Rux or Peg they may well lower your Hgb, Hct , sometimes only initially so I would keep an eye on it. It sounds as if you are early is MF, some I know have had great success with Peg for early MF. Rux is common for MF and not everyone puts on weight, there is a tendancy for some , I am on high dose Rux for PV , I don’t let my weight increase , this involves exercising a bit more and watching what I eat. I eat 3 proper meals a day, avoid sugar and refined carbs, instead plenty protein, vegetables, just enough complex carbs from sweet potatoes, oatcakes etc, healthy fats, I don’t feel hungry. The bottom line is we will only increase weight if we consume more than we burn off by moving. So I wouldn’t let weight concerns prevent trying Rux if that’s the best drug for you.

[Scaredy_cat]

I progressed from ET to MF and was put on ruxolitinib to hopefully shrink my spleen. Unfortunately we had difficulty raising the dose because my platelets fell too much-a noted problem. Yes I put on weight but itching was no longer a problem. I then moved to fedratinib which was better for the platelets. My spleen didn't shrink as much has hoped ready for my stem cell transplant in January.

[lizzziep in reply to Scaredy_cat]

My spleen isn’t really enlarged, a scan showed it was 11cm (if I’ve remembered rightly) it occasionally feels uncomfortable, but that’s faded since I’ve been on the EPO injections!