ET since 2001, now anxious about changes in blood counts

[Otterfield]

Hello, I am new here. I was diagnosed with ET in 2001 and, with a few ups and downs, it has mostly been stable on Hydroxycarbamide, Anagrelide and Aspirin until now. At my last appointment, my haemaglobin had dropped to 96, platelets 109 and WBC in the 20s (but have been stable around that for a year or so). My haematologist is switching me to Interferon, which I don't mind, but I'm feeling very anxious because he also suggested that my ET might be transforming to Myelofibrosis. He says it will take three months for the Interferon to work and then if necessary he will look at my bone marrow again. My issue, after many years of just accepting and living with the condition, is that I am now really struggling with fear about the changes and the future.

[charl17]

I am sorry that you are feeling so anxious about this. Is your hematologist an MPN specialist? It may be time to get an opinion from a specialist. As a non-professional, I hesitate to express any opinion based on fragmentary information. It seems that your doctor has concluded that HU is not working for you and that interferon might work. I don't see how it could hurt to try. But your real concern appears to be disease progression. This is a real possibility although not a catastrophe. Many of us are living well with MF.

[Otterfield in reply to charl17]

Thank you for replying charl17. You are absolutely right that it's my anxiety which is the problem at the moment. Your last two sentences are comforting - thank you. As far as I know, my haematologist is not an MPN specialist but it's never seemed to matter while everything was straightforward. He is very thorough but lacks a "bedside manner" and somehow manages to make it sound as if any changes would be catastrophic. It leaves me not knowing what to think and afraid to find out too much, which I know is cowardly. Thank you again.

[Tico]

It is understandable that you feel anxious and you are not cowardardly for feeling the way you do after being relatively stable for that amount of time. I seem to have gone on a downward trend for the 1st time in 11yrs, I have been consistently unstable with huge leaps in the hundreds between visits to haematology but last 4

visits are plts: March-575,April-483,June-183 and last week 141.Rbc's have always been consistently low, Hb; hovers normal to the low side, Wbc's;in range.Never had pattern were Plts consistently drop. In some of us with Mpn's it can be a bit unpretictable but if your still worried have a talk with your Cns. Hope your anxiety improves soon,wishing you all the best. Tina🤗

[socrates_8]

Hey there Otterfield...

Welcome to the Forum. There is a vast wealth of people here that should also be able to help answer a few questions for you... They are all really lovely people I can assure you...

I too was initially diagnosed w/ ET, and then later reclassified as Post ET/ MF... That was just over three years ago now, and I am still here, and in some ways, my Quality of Life (QoL) is much improved today really...

Another friend here, (Hethro), has also recently started taking Pegasys'. He is Post PV/ MF, and he was only just telling me recently how all of his bloods are coming back within the normal range, and that he is feeling stronger and more confident w/in himself too...

Both of us have taken up cycling these days, and recently started our own Fundraiser here in Sydney, Australia - mpn-mate.com/fundraising-fo...

Please feel free to drop into our Forum and make a Post or two too...

Personally, I have found that by having something that I can really stay focussed on helps me Live more w/out thinking too much about my MPN, and that allows me to get on w/ my life as best I can...

Hope this helps a little...

Best wishes

Steven

[Otterfield in reply to socrates_8]

Thank you so much for sharing yours and Hethros experiences, including that you are cycling. I walk a lot, at least 25 miles a week and feel encouraged that I will be able to continue and increase this, even if my disease does progress.

Jennie

[socrates_8 in reply to Otterfield]

Hey again Jennie...

Just endeavour to stay as positive and proactive as you can...

In my experience, we must all become our own best advocates to manage our own MPN journeys...

Finding the right diet and exercise regime is tantamount to improving our QoL, in my view...

Keep smiling... :-0)

Steven

[Otterfield in reply to socrates_8]

Thank you, Steven. My diet, weight and exercise habits are pretty good I think, but there are always ways to improve. In particular, I find that brisk walking helps to calm me down.

[socrates_8 in reply to Otterfield]

Hey Jennie...

My knees do not much like walking and/or running too much these days after many years of wicket-keeping playing cricket. However, cycling works really well, and it is a mainly aerobic form of exercise that I can now sustain for 3-4-5 hours at a time...

Just proving that we are all a tad different, and we will all have something that works better for one individual over another...

The most important point, in my view... Is that we all find something we can consistently maintain as our exercise regimes. As we continue to age, our muscle mass will eventually dematerialise if we do not endeavour to keep them functioning, which in turn will lead to an ever-increasing sedentary mode of life... Best to try to stay as busy as we are able for however long we are comfortable in doing so...

Best wishes

Steven

[Otterfield in reply to socrates_8]

Absolutely. Thank you.

[perichs]

Studies suggest that interferon is able to stop MPNs progressing, and there is even evidence suggesting that for some patients it can get them back to ET and even further away from AML, only leaving a residue of the disease. After a certain number of years on interferon, some patients have even been able to go off interferon and live without it for 5 years or so, before they eventually will have to go back to it again. I'm not saying this will happen for you, because there are no guarantees. We are all different, and drugs like interferon will affect us differently. Just writing this to tell you that there is hope. Moreover, 85 % of patients experience a symptom free life on interferon, except for maybe a rough start the first couple of months or so. But then again, we are all different, and I'm in the 15 %. The good news is, though, that even though I'm struggling with symptoms, the interferon seems to be able to prevent the disease from progressing further. And even if your disease should progress, there are many people living a good life in those phases too. I am the chairman of the Danish MPN Patients Organization, and I know a lot of people living well with the disease - including patients with a disease that has progressed to MF. I'd also like to mention that we have members who have lived with these diseases for over 40 years and are living relatively well. It's a very good idea what socrates_8 is suggesting above: Exercise is very important and can improve quality of life. I know it's not easy to exercise with this condition, but some exercise is better than none, and everything counts, like mowing the lawn.

[Otterfield in reply to perichs]

Thank you perichs, especially for the extra information on people's experiences with Interferon. I'm sorry that you're in the 15% with symptoms, I hope this doesn't affect your quality of life too much. As for exercise, I am a keen walker, at least 25 miles a week and I'm really determined to keep this up.

Jennie

[Moina-vdh in reply to perichs]

That's very encouraging information. Would be wonderful if the symptoms would lessen so much that the medication could be stopped. Thank you for sharing.

[Jbut]

Hiya i have been on interferon for 10 years been great counts have been stable,i have been told that i have to stop this medication in september because hospital can not get hold of the interferon,so i have to change to different meds . Am gutted because am worried now incase new meds dont keep me stable x

[Otterfield in reply to Jbut]

Thank you for your reply Jbut. I'm really sorry to hear that the Interferon won't be available to you anymore. I hope that can be sorted out.

[Otterfield]

Just want to say a huge thank you to everyone who has responded to my post. My fear and anxiety won't go away magically but all your comments have been so supportive and encouraging that I am feeling more positive. I have experienced the wonderful kindness of strangers here. I am so glad I joined the forum.

[Irishgal12]

How did u get on