I haven't posted for a while. All has been well, but my spleen is getting bigger now at 19.4cm. I am MF patient and 54. Working full time.
I have been ok with it, but I am more aware of it and sometimes uncomfortable, or have to lie right (I feel it under my ribs, in my back), and I am losing my appetite a little..
Overall blood counts are stable with platelets around 480, HGB 110 and WBC 13.5..
MPN team suggesting it might be time to consider interferon to see if it will reduce spleen size..
Interested to know if anyone else has had success with interferon to reduce spleen size, and anything about your journey starting on medication..
Whilst I know these steps must come it takes a lot of thinking about..
Thanks in advance!
Written by
Mrs_Average
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I don't know about interferon and spleen size but when I had my enlarged spleen, ruxolitinib and then fedratinib were prescribed ( my platelets went too low with rux). I thought ruxolitinib was the preferred drug of choice for spleen size so might be worth asking
Like scaredy. cat. I believed that ruxolitinib was the regime to manage spleen size. I am on ruxolitinib and this reduced the size of my spleen and is working well. Maybe more questions to your to your MPN team to help your decision making.
I was on Besremi for 1.5 years and it allowed my spleen to get really big. I switched to ruxolitinib just a couple of weeks ago and already my spleen is shrinking.
I’ve been on peg interferon for 6 weeks now. I was very wary about starting it as I had read about the various side effect. However, the first week I was very nauseous, I was prescribed anti sickness medication but managed with Gaviscon! That has mostly faded, I have been to the toilet more often 💩, sometimes had stomach cramps with that. It has taken my platelets down though already. I can’t ‘feel’ my spleen as much but would need an ultrasound to check the size. I’m also on EPO injections as I was extremely anaemic for a long time.
Interferon didn't shrink my spleen at all, in fact it grew bigger during the year I was on it. Ruxolitinib did a great job though. I think we all respond differently to different drugs.
Apparently I'm very sensitive to the affects of medicine. I've been taking Besremi since May 2022. Initially 100 mcg every 2 weeks until May 2023 when we reduced to 50 mcg every 3 weeks and now 50 mcg every 5 weeks. We changed the dosing amount and frequency due to negative side effects.
My spleen size was 18.4 cm and is now 16.2 cm. Instead of seeing my doctor every 6 weeks we extended the visits to every 3 months. November is my next visit and will tell if we need to increase the dose again or keep things the same. I haven't required phlebotomy since beginning Besremi, which is a tremendous relief for me.
I hope this information helps you in making your decision. Be well and stay strong!
It sounds like a new treatment plan is in order. Based on what you describe, one would think that a JAK-inhibitor would be a consideration as others have mentioned. With your HGB already low, careful monitoring would be needed. Note that the interferons will also tend to drop your HGB, so close monitoring will be needed regardless.
Hopefully momelotinib will become available in the ear future since it has an indication for MF with anemia.. The FDA has extended the review period with an action date of 16 September 2023. Perhaps things will move forward at that time.
I have responded quite well to the interferons, Pegasys/Besremi, to treat PV. The IFNs have been both effective and easy to tolerate for me. Note that we are all different in how we respond to these meds.
You might want to consider getting a second opinion, particularly if you are not already seeing a MPN Specialist. That is a very good idea when making any significant treatment decision.
Please do let us know what you decide and how you get on.
Interferon works slowly so I'd give it at least 6 months before deciding if it's starting to stabilize or reverse spleen growth. It will likely work well pretty quickly to reduce your slightly elevated WBC count.
I'm not a doc, but the usual starting dose of Pegasys interferon is 45 mcg per week for the first month. Then I'd consider, with your docs permission, to increase the weekly dose in small 10-20 mcg increments to see if you can ultimately tolerate 90 mcg. Weekly 90 mcg doses should improve your chances of eventually stabilizing or reversing spleen growth.
I can't speak to splenomegaly or MF directly, but my experiences with Besremi [Ropeginterferon] have been essentially benign.
I have PV and my HCT's were in the mid to upper 60's prior to treatment, [which started w/ HU in 5/22] and because of side-effects and other considerations was transitioned to Besremi in approx 8/22.
I started on the low-dose, slow titration protocol, increasing by 50 mcg approx monthly, and currently, I'm on the maximal dosage of 500 subcutaneously every 2 weeks.
My HCT's have been hovering around the goal of 45-ish since we went up to he 500 mcg dose, except that it bumped up in late July, after a couple of my shipments were received at a temperature of low-50's [F], when the maximum temp is supposed to be <45 degrees [F], which my onco-pharmacist at Roswell Park says may make the treatment less effective, but is otherwise not harmful or toxic.
So, I have had a total of 2 phlebotomies this year- the most recent the 1st week of August, because my HCT was 50. for which I have to credit Besremi.
As far as side-effects- I had only 1 episode of flu-like symptoms the day after my 300 mcg dose, and no other side-effects at all.
I was 63 when I was diagnosed last year after >10 years of rising HCT's and HGB's, and while I have developed an Iron-Deficient anemia from the combination of medications and blood-letting, it doesn't seem to be causing me any significant symptoms.
Per EP-guy and others, the anemia is ubiquitous and should almost be considered to be the therapeutic goal, as it causes the mutated BMSC [bone marrow stem cells] to decrease their over-production of all 3 cell lines [WBC's, Platelets. and RBC's].
YMMV, but as far as I know treatment with Interferon [either alone or in combination with other medications [like JAK2 inhibitors [Jakafi] or hepcidin-mimetics [Rusfertide ] is the only truly disease-modifying treatment known [i.e., It can change the progression and natural history or course of the disease process].
Per this study, INf are effective in MF, but they are not necessarily very good at reducing spleen size, if that is the main goal of treatment. However, since increasing life expectancy and reducing disease progression at at least as important to most of us, it may be the best alternative- either alone or in combination as above.
" These findings in a large series of patients with myelofibrosis suggest that pegylated interferon therapy may provide a survival benefit for patients with intermediate- or high-risk Lille and dynamic International Prognostic Scoring System scores. It also reduced the JAK2V617F allele burden in most patients. These results further support the use of pegylated interferon in selected patients with myelofibrosis."
If you're not already seeing an MPN super-specialist, you may want to request a consultation with one- which is what I asked on my general oncology MD, and was how I got started on Inf.
"It works in early phases of myelofibrosis. When myelofibrosis for example, becomes advanced in the bone marrow, it becomes very sclerotic or fibrotic, interferon is not effective. "
"First-line ruxolitinib (Jakafi) plus pegylated interferon alpha 2a demonstrated durable spleen volume reduction in patients with myelofibrosis, according to findings from the phase 1/2 RUXOPeg trial (NCT02742324) that were presented at the 2022 ASH Annual Meeting."
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