Had my appointment with my consultant today my platelets are now 410 gradually going down he did say we could up the dose of pegasys I’m on to 90mg as I’m on 45mg once a week at the moment to see If my platelets go down faster but I’m happy to stay on the lower dose even though my platelets are only gradually going down. I forgot to mention the itchy feeling between my toes I always seem to forget things so I should write some questions down on my next appointment so I don’t forget. Silly question but anyone on low dose aspirin do they dissolve the tablet In water first or swallow It with water ? I was told I could do either with the dispersable tablets by the pharmacy. I’ve been swallowing my daily aspirin with water instead of dissolving It.
Good evening @RA2000 @Erica @Ceri_BloodCancerUK and everyone else following this thread, I hope you are all well and enjoying what feels to be unseasonally warm weather. I’m still in shorts for work, and I’m not even a Postie!
Erica, I hope that your roller exercises and activities are helping; if not, you could always become a painter and decorator!
RA2000, I’m glad to hear that your platelet count is down to such a good and low number and hope that they will continue to be at this, or similar, levels. i’m intrigued that you are suffering from itchy toes and wonder if it is related to your Myeloproliferative neoplasms ('MPN'). Reference your Aspirin conundrum, I too take a dispersable aspirin, and I swallow it whole, usually with a morning glass of orange juice. I do write down my questions, along with other items of interest, and usually manage to ask most of what I’ve written down.
Ceri, I’m not sure if this is the correct wish on my behalf, but I hope you were well enough to have your Covid and Flu jabs today. I have to say that my right arm, the flu jabbed one, is still really achy.
Now then, I knew that there was something I had failed to mention in my earlier post, so here goes. The more diligent amongst you will be aware that I have had a number of issues of a dental nature, with a number of “teef” being extracted over the years, with the most recent one being whipped out only a few weeks ago. In fact, the tooth fairy and I are on first name terms now! The latest removal was of a No2 molar which, by its removal, has left sufficient space for one of my Wisdom Teeth to make an appearance, So here I am, aged 61 & 1/2 (and a bit!) doing something in common with my newest, and youngest, grandson: teething! Please, one and all, have a good chuckle at that, as indeed I am, I won’t be offended as I think it is quite ironically amusing!
As always, my dear Forum Friends, take care, stay safe, be kind to yourslves and keep on smiling.
Best wishes,
Jimbo165
Oh @Jimbo165 I still don’t know what I want to be when I grow up, so with the size of roller I have it would only take a couple of back and forth’s and job done. Thank you a very good idea. However being height challenged I would need a very tall ladder.
However I must be diligent as I remember your dental challenges and deficiencies. How fascinating a new wisdom tooth emerging, you are going to bankrupt the Tooth Fairy if your teeth keep regenerating.
As always, my dear Forum Friends, take care, stay safe, be kind to yourslves and keep on smiling
Hello again @RA2000, glad to read that your platelets continue to drop. Great stuff!
I’d always say that any new or changing symptoms need to be passed by your haematologist at this early stage just so they know. It might be that they’re caused by the Pegasys taking effect, but best to check with your specialist. All sorts of odd side effects began after I started taking hydroxyurea for Polycythaemia vera ('PV'), including my first ever case of athlete’s foot and other immunity-weakened skin type stuff. Annoying and gross.
Oh and for what it’s worth @RA2000 I also take my “baby aspirin” whole with water, around dinnertime with all my other medicines to get it over with!
Dear @Jimbo165 I’m not at all surprised that your wisdom continues to show itself, although I do wish your body would give you a break for once! Think I’ve got a couple of wisdom teeth still lurking 
Glad to hear the COVID-19 and flu vaccinations are on offer there, I happened to have mine today and have an achy upper arm to prove it. It’s great that they’ve become so much more routine these days!
I wonder dear @Erica if you feel a little like a baker kneading yourself with that roller?! Love a good back-stretching massage. Hope you’re well on the mend now @Ceri_BloodCancerUK 
@Duncan the roller is brilliant, you would think I would be at least 7 ft tall by now, but I am still struggling to get to 5ft tall !!!
I had my flu and Covid jabs on Wednesday, one in each arm, so if I had a reaction they could isolate whether it was to the flu or Covid, Yes, achy arms but fine.
Might need to invest in a roller too @Erica, my back has been a right creaking pain this summer, clearly I need more stretching. Hard to imagine you’re only 5 feet tall after those years of Pilates effort!
Had my covid and flu jab this morning feel fine so far no aches In arm yet, as ever I was the youngest In the waiting room at the chemist to get the vaccines feel like a bit of a fraud In a way for some reason, got asked by the chemist before I took the vaccines why I was eligible to have them done for free and explained I had essential thrombocythemia they had never heard of It, I guess It’s an invisible illness, If It wasn’t for the fatigue and me making that first appointment with my GP a couple of years ago I would never of knowing I had the condition. Hope everyone’s keeping as well as can be and take care
Oh great stuff @RA2000, know what you mean about that fraud feeling. For me with my invisible Polycythaemia vera ('PV') I’ve had to practice whether to correct people or just let it go. I think with a chemist who hasn’t heard of these Myeloproliferative neoplasms ('MPN') then really they can be educated by us! Then hopefully the next time they’ll be more understanding.
And you know I sometimes get a funny look too for seeming too young to some healthcare people. I remember one snotty pharmacist questioning why I was trying to refill a chemo prescription! Another time a nurse queried why I was having the pneumococcal vaccination. I guess that makes up for being invisible so much of the rest of the time!
Hope your vaccinations don’t cause any trouble @RA2000. My shoulder is bit inflamed today but my energy levels seem about normal, so my dog is very excited for his imminent walkies.
@Duncan Got a sore left arm now feels like It’s dead think I spoke too soon that’s the arm I got the covid jab in but the flu jab on the right feels absolutely fine was abit of a struggle when I drove to the shop before. Good to hear your energy levels are normal and hopefully your inflamed arm gets better soon, enjoy taking your dog out for a walk. Hopefully through time people understand more about the Myeloproliferative neoplasms ('MPN') conditions, I do hope their Is a cure as well In the future. Enjoy your weekend everyone
Hi all
So i’m relatively new to all this. Im a 49 year old father of 2 amd husband of 1 who has bee n diagnosed witt Essential Thrombocythaemia (‘Essential Thrombocythaemia ('ET')’) and Monoclonal gammopathy of undetermined significance (‘Monoclonal gammopathy of undetermined significance ('MGUS')’) a couple of months ago.
I’d been struggling woth fatigue and mood issues for some time before this. Over the past week things seem to have escalted. Symptoms including;
Really bad fatigue
Piercing headachs
Abdoninal pain
intense nausia
foggy/lathargic/irritable
My Haematology team are fully aware and have decided to start me on PEG Interferon next week. I cant seem to see too many people who felt this improved their symptoms a great deal?
I feel a little concerned that the interferon can cause fatigue, when this is already one of my main symptoms.
Its all confusing to me at this point. So many complex names and terms. So many symptoms and so much to learn about.
Ive been feeling positive on the whole, but this week has knocked me as i hadnt expected to feel so poorly.
I hope you are all as well as you can be.
Take care
Aaron
And sorry for not proof reading before sending ha ha so many typos
Hi @Timmins26 Aaron
Sorry to read that it has been a tough week. Important to remember that everyone’s response to treatments is different.
Sadly with any blood cancer there are going to be ups and downs. I found that just taking things a day at a time to be a strategy that worked for me.
There is so much to learn and it’s important to let your Haematology Team help you decide next steps.
They know their stuff and have big networks that they can reach out to for second opinions.
Take care of yourself
Duncan
Funny you should mention your COVID-19 vaccine injection arm being sore @RA2000 as a big bruise emerged from mine a few days after! It’s totally fine now, hope yours is too. I like to imagine I’ve got an anti-virus forcefield around me for a few months after vaccination!
And I agree, hopefully there’ll be a cure or remission for us soon enough—science is coming on leaps and bounds with research into Myeloproliferative neoplasms ('Myeloproliferative neoplasms ('MPN')'), like the great work that Blood Cancer UK does 
Hi @Timmins26
Thank you for your post. We’re sorry to hear that you’ve been having such a difficult time. Being diagnosed with both Essential Thrombocythaemia ('ET') and Monoclonal gammopathy of undetermined significance ('MGUS'), whilst also trying to make sense of new symptoms, tests and treatments, can feel incredibly daunting.
It’s good to hear that your haematology team are aware of how you’ve been feeling and have made a plan to start PEG Interferon. As you’re experiencing significant symptoms including fatigue, headaches, abdominal pain and nausea, we’d encourage you to keep your team updated, particularly if your symptoms worsen, change, or you develop any new concerns. This will help them support you as best they can and ensure they will be kept in the loop of how you’re doing.
Fatigue can be a symptom of Essential Thrombocythaemia ('ET') itself, and it’s understandable to have concerns about starting a treatment that may also cause fatigue as a side effect. Everyone responds differently to treatment, and your team will be able to monitor how you’re getting on and discuss any side effects you experience.
We have information about Essential Thrombocythaemia ('ET') on our website, including information about the condition, symptoms, treatments and looking after yourself: Essential thrombocythaemia | Blood Cancer UK . In the looking after yourself section there is also information on fatigue and managing being active.
Our colleagues at Myeloproliferative neoplasms ('MPN') Voice also have a helpful page about interferon treatment which you may find useful: Interferon alpha – MPN Voice
We do have information on Monoclonal gammopathy of undetermined significance ('MGUS') too which can be found - MGUS (monoclonal gammopathy of undetermined significance) | Blood Cancer UK.
Please do keep posting and let us know how you get on.
Our Support Services nurses are also here if you’d like to talk anything through on 0808 2080 888 or support@bloodcancer.org.uk
Take care & warm wishes,
Emma (Support Services Nurse)
Good morning all, from a very sunny Midlands (certainly in my part!), I hope that everyone is as well as can be.
Just back from my Sunday morning swim and thought I would let you Forumittes know how things are going.
I had my Fibroscan last Monday, at Leicester General Hospital, where the results were okay, I think. My liver Fibrosis score has improved from 9.9 down to 5.5 kPa and my liver Steatosis score is at 293, which isn’t so good. I don’t think that the latter score has changed overly much since previous tests were done.
I spoke with my CNS at LRI and she is going to refer me for another ultrasound of my spleen as I am suffering more frequent bouts of upper left rib discomfort as well as feeling full very quickly. Some slightly unhelpful advice of “try eating 6 smaller meals a day” was offered, and politely declined as impractical, not to mention incompatible, with my job! The hope is that the spleen scan may be done before my next clinical appointment in early December (Yikes, Christmas approaches!!). I have also reverted back to Omeprazole after suffering a poor response to the twice daily Famotidine.
Other than that, and feeling in a permanent state of exhaustion/fatigue, bruising like it is going out of fashion, poor appetite, and aching bones, joints and muscles, I’m in good shape! After all, round is a shape!
Please take care, stay safe, be kind to yourselves and keep on smiling.
Best wishes,
Jimbo165
Oh, @Jimbo165 I really do enjoy your posts, yep, it has evolved into a lovely sunny autumn day here too.
Your post, on balance, was more positive than negative I would say.
Yes, 6 smaller meals a day would be impractical for me too and think of all those crumbs in your cab. I tolerate omeprazole well.
I have all the list of symptoms that you have too, apart from the poor appetitive, I reckon that is par for the course.
This week I got an NHS appointment letter through for another condition that I have and I dutifully updated my notes and filed it away. I went to put it in my electronic diary and thought the day and date don’t match and then I realised the appointment was for 2028 not 2027 !!!
Keep us posted and please take care, stay safe, be kind to yourselves and keep on smiling.