ET diagnosis finally sinking in

Active Monitoring (Watch and Wait)
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Good morning @Erica @DuncanB @Gillyj (welcome to The UK) @ProfessorJAK and everyone else following this thread, hope you are all as well as can be.

Well I started the new antihistamines on Friday morning and was then (hopefully only coincidentally) horribly ill overnight in to Saturday, both in an upwards and a downwards direction (apologies for the description). Touch wood, that seems to have “only” been a short term event. The itching does seem to be less irritating/annoying now. I have decided to take the new tablet in the evening as you can’t have orange juice with them, which is my early morning drink of choice with breakfast (at 05:30hrs!)

I am currently enjoying a week off work, and will be visiting Essex later in the week for a period of rest, at my cousins, where I will not be allowed to do anything.

I did enjoy a very pleasant afternoon yesterday at The De Montfort Hall in Leicester when I attended the Glenn Miller Orchestra concert. It was very, very good and really put me “In The Mood”. It had been difficult to obtain tickets online but I managed to get some by phone after calling “Pennsylvania 6-5000”! The show finished with a couple of Frank Sinatra hits and Eric Coats’ “The Dambusters March”, so it was a really good show.

In the realms of “it’s a small world, isn’t it?” just before the show began I bumped into one of my Consultants; I’m not sure which of us was the most surprised, but I’m sure that we shall discuss this when I see her in a few weeks time on the 2nd of October.

I’m still keeping up with my swimming but limiting myself to 32 lengths per visit, which equates to approximately 1/2 of a mile, which is enough for me and leaves me feeling very knackered, but clean! I was chatting to one of the lifeguards yesterday morning , and talking about my past, competitive swimming days, when the dreaded “maths” came to the fore and I realised that my last truly competitive swimming competition was some 40 years ago; that’s when “Tempus Fugit” hits hard! :rofl:

As always, my dear Forum Friends, take care, stay safe, be kind to yourselves and keep on smiling.

Best wishes,

Jimbo165

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Hi @Jimbo165 I was awaiting your next installment but not the up/down description. Let’s hope the antihistamines help your itching.

The Glenn Miller Orchestra concert sounds wonderful and definitely a conversation for the 2 October.

I reckon your 32 lengths of the swimming pool is a very good limit.

Off I go singing the Dambusters March with gusto here and yes, it is a very small world I walked into one of my GP nurses in our town and she started examining my head for the skin and pre cancer patches

As always, my dear Forum Friends, take care, stay safe, be kind to yourselves and keep on smiling.

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@Jimbo165 you are to be congratulated for living life to its fullest. For me, that is the only way to go! Most of us will develop chronic illnesses as we grow older, varying in severity, and varying in how many we have. I have worked as a psychologist with older people with various chronic illness (never blood cancer, I am learning about that from my own experience and my friends in places like that, and some from my docs) but I think the generalization is the same.

Awesome that you are getting yourself out to see great music, whatever that might be for you. I recently took my lovely wife to a concert by Buddy Guy, and great 90 year old Blues musician. He was going full tilt and as we say in the US, “cussing like a sailor”. He had everyone smiling and cheering. We have tickets for a Broadway production of “Buena Vista Social Club” and I’ve set us up to stay in a cool boutique hotel a few hundred feet away to save from the theater. This is a special one to us, we once traveled to Miami to see the group (the originals) perform in concert, and when we traveled to Havana, some of these musicians performed at our hotel (the Nacional). We are not saving our money for a rainy day, we are living in the sunshine. :slight_smile:

Best wishes and keep making the best of what you have, and making your health even better.

Bill

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Hi Rosita, I have just joined the site and and I was diagnosed with Essential Thrombocythaemia ('ET') in June so I know what you mean about it being a hidden problem as people just see you as being the same. I am 84 and will be on Hydroxycarbamide for the rest of my life. The medication took my platelet count down from 720 to 430 in just 2 months and this is now in the safe level. I had a bad day on Saturday when I felt too tired to go out but that is unusual. Mostly I have no symptoms except tingling in my legs at night and bruising easily. With the high temperatures this summer I have just been able to keep inside to avoid the sun but not so easy if you go to work. An aspirin a day is now the norm for me and I just avoid anybody with so much as a cold as my immunity is low. My husband has now been treated for 4 different cancers and so far been cleared of 3, waiting results of 4th. This means blood cancer seems so insignificant in comparison, Good luck and I hope things go well for you. I’m in the UK by the way.

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Hi @lesbro

I’ve responded to your other post and just wanted to welcome you to the forum.

You will find that it is a really supportive forum where people really understand what life is like living with blood cancer.

Hoping that results for your husband are positive, especially as already treated for 4 cancers and cleared of 3.

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Great attitude @lesbro ! I get lab tests and see a Hematologist for my Essential Thrombocythemia at a cancer center. I got the diagnosis about a year ago. My wife joined me last time and commented that I looked like the healthiest person there! I too have fared pretty well with this condition and its treatment. I know that identifying the condition and getting treatment to lower platelets greatly reduces my risk of having a thrombosis (blood clot). I am 71, honestly I do have fatigue but I have several other conditions that likely contribute to that (on top of the Essential Thrombocythaemia ('ET') and its treatment.

Good for your husband for being cleared for three cancers, let’s hope the same for the 4th. My wife is the same age as me, we have been married 50 years and have been through a lot together–being poor at first, both developing our careers, having two sons and raising them (mostly!), seeing illness in our parents, and now both of us with our share of conditions. But life is still good and I hope all of us find things to look forward to.

Bill

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Hello there @lesbro, I just wanted to welcome you to the forum and thank you for your kindly post. I’m very sorry to read of your recent diagnosis with Essential Thrombocythaemia ('ET'), it’s a lot to take in so I hope you’re being very kind to yourself.

I’ll share the great Blood Cancer UK information about Essential Thrombocythaemia ('ET') here for your reference: Essential thrombocythaemia | Blood Cancer UK

Sounds like your aspirin and hydroxyurea treatments are working well to thin your blood and bring down your platelets and presumably haematocrit—I happen to have the same treatments for the closely related Polycythaemia vera ('PV') so likely follow along blood tests looking for similar results.

But the tiredness is no joke, is it? For many of us living with Myeloproliferative neoplasms ('MPN') and other types of blood cancer fatigue can be the main symptom. My own fatigue was pretty disabling for a few months, so let’s hope yours keeps to a minimum. If it does interfere with your activities then there are many small ways we can improve our energy levels, just let us know if that fatigue worsens for you and we can share some tips.

As for the ordeal your husband and you have been through with so many health challenges may I just say how sorry I am. One ailment is more than enough and I wouldn’t wish the big C on anyone. Keeping my fingers crossed that his upcoming results show good news.

I’d like to just say that your diagnosis with Essential Thrombocythaemia ('ET') may seem insignificant but please know it is taken very seriously here as we forum members know how debilitating living with blood cancer can be—mentally, physically or otherwise. Living with Myeloproliferative neoplasms ('MPN') as we do can seem invisible to others, but a kind phlebotomy nurse early after my diagnosis reminded me that the moment we are diagnosed with Myeloproliferative neoplasms ('MPN') we become cancer survivors.

Do please keep us post about how you get on @lesbro, and do look further around the forum as you’ll find many others living well with Essential Thrombocythaemia ('ET'), like dear @DuncanB and @ProfessorJAK say. If you’d like to look for others just use the search box at the top and a term like ‘Essential Thrombocythaemia ('ET')’.

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Been a while since I last messaged on this forum not even sure anyone will remembe me but I really should do It alot more as good to speak to people going through the same situation and good to get things off your chest talking to like minded people. I continue to take a pegasys injection every week and my platelet levels have dropped to 479 when I first started taking them they were 654, I’ve noticed a reduction In my fatigue but every now and again the fatigue hits me. The past few weeks I’ve had Itchy feeling between my toes not sure It’s because of my condition essential thrombocythemia or just athletes foot! I hope everyone Is keeping as well as can be and I will try and stay In touch

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Of course I remember you @RA2000 and it is great to hear from you and to catch up with how you are doing.

Yes, the old fatigue does tend to hit me when I am not expecting it and, coming to think of it, when I am !!

It is so hard to work out whether other symptoms are down to our diagnosis, any medication we might be taking or something completely different.

I attach symptoms of Essential Thrombocythaemia ('ET') information Symptoms of essential thrombocythaemia (ET) | Blood Cancer UK

Personally I would contact my medical team and let them know or talk to the Blood Cancer UK nurses on 0808 2080 888

I await others comments from people who probably have Essential Thrombocythaemia ('ET').

Take lots of care of yourself and please do let us know how you get on

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Hi @RA2000 - of course we remember you! ( just seen @Erica s reply) I too am on pegasys for Essential Thrombocythaemia ('ET') but every 2 weeks and my platelets came down from 870 to below 400 . Yes fatigue can still be an issue but it’s normally of my own doing as I’ve all my life been a busy person and can’t change now! Although I do give in and sit for a couple of hours most afternoons to recharge! I get itchiness on my arms and back but it comes and goes and doesn’t last for too long luckily.

@Jimbo165 how are you doing with your antihistamines? Still helping?

Welcome to this chat thread @lesbro and @ProfessorJAK . I am just 70 and like you people can’t believe I have blood cancer as I look so well. It’s hard when we feel tired isn’t it.

I don’t feel blood cancer is insignificant compared to other cancers- as unlike a lot of cancers that can actually be cured we have to live with it for ever!

Take care everyone and keep staying positive!

Gillyj

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@Erica I will keep In touch on this forum for sure, can sometimes feel like a lonely world having this condition as most people don’t really understand or have never heard of It, I do have a supportive family however, I have an appointment with my specialist on Monday so I will mention the itchy toes, @Gillyj nice to hear from you and good to hear your platelets have dropped to 400, think the fatigue could be down to the condition but also sounds like your an active person which Is good. Take care everyone

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Good evening @Gillyj @Erica, everyone else and the returning @RA2000, I hope you are all well. Yes, fatigue is my most attendant companion, and a most unwelcome one at that. I feel very much as though it makes no difference whether I have been able to rest, or not. I also feel, sadly, that I am getting more permanently fatigued these days.

@Gillyj, the answer to your question is that yes, the “mega antihistamines” were most definitely working for the first few weeks but, alas, the itchiness has come back with a vengeance over the last couple of days. I am, thankfully, (I think that’s the correct terminology!) at LRI on Friday so will be able to seek help on this, and other, difficulties. I have been suffering with a very weird sensation in my upper right back and right arm for the last 4 days, and I have no idea what has caused this “new ailment”.

Well, I have been getting my monies worth out of the NHS of late, with a B12 jab last Thursday, blood letting today, a Pegasys injection due on Friday and then Covid/Flu jabs on Saturday! I will look as though I have tripped over and landed on a hedgehog at this rate! And another Fibroscan to have a look at my Liver in 12 days time.

As always, my dear Forum Friends, take care, stay safe, be kind to yourselves and keep on smiling.

Best wishes,

Jimbo165

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Oh dear @Jimbo165 you sound like you are in the wars! But it also sounds like you have a great team looking after you! That’s a shame the itchiness has returned- so annoying for you! I am not a follower of all these vaccinations, it will probably come back to bite me one of these days but whilst my immunity is good I am declining them.

@RA2000 yes my tiredness is most definitely my condition, I meant it’s my fault that I push myself too much to try to do too much :woman_shrugging::grin:

Anyone else find that the mosquitos are still very much active? Pesky things!

Gillyj

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Oh @Gillyj yes, the mosquitos are still very active although I haven’t seen, heard or been bitten for the last 2 nights I am definitely not complacent.

The bites take ages to get over, I look as if I have had Botox on my face.

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Oh @Jimbo165 I am so sorry to hear that your itchiness has come back with vengence, how miserable for you.

Also you have the added weird sensation in your upper right back and right arm.

So glad you are at the LRI on Friday, please do let us know what they say.

Take lots of care, stay safe, be kind to yourself and keep on smiling.

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Good afternoon dear @Erica @Gillyj @Duncan @DuncanB @Willow @RA2000 @Ceri_BloodCancerUK and everyone else that is following this thread, I hope that you are all well and enjoying the early October sunshine.

Well, following on from Friday’s visit to LRI, here is my report: my blood work is relatively stable and my platelet count is good, for me, in the mid 350’s. However, and it wouldn’t be a Jimbo165 report without a “however”, would it?, my liver function is still operating under the misguided idea that it doesn’t have to behave in an orderly and suitably recognised fashion. But as I have my Fibroscan in a week’s time, we (I love the Royal we!) can wait until after that before making any other decisions. As regards my itching, I was fortunate enough to see the lady Consultant Pharmacist who, with her greater knowledge of various drugs, has changed some of my medication. I am now on 6 tablets in the morning, with a further 4 later in the day, along with Paracetamol as and when. And, of course, my fortnightly Pegasys injection. I also had my Covid and Flu jabs yesterday and, blimey, my arms “don’t 'alf hurt” today, although I did manage my early morning swim.

As always, my dear Forum Friends, take care, stay safe, be kind to yourselves (Copyright Erica!) and keep on smiling.

Best wishes,

Jimbo165

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@jimbo165 Good to hear that your bloodwork and platelet levels are stable and I hope your fibroscan next week goes well, I got a text through the week saying I was eligible for the flu and covid vaccine not a big fan of vaccines but If It prevents us getting ill especially when our immune system Is weakened with this condition I’m going to have to get them booked In. I have an appointment with my specialist tomorrow to monitor my platelets with me being on pegasys hopefully they are stable and heading In the right direction. Take care everyone

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Oh @Jimbo165 I always scan your posts for the ‘Jimbo’s however’. You are my ‘Curates Egg’

Let’s hope your Consultant Pharmacist has sorted out your persistent itching.

My Pilates Instructor has given me a roller for my back. Always difficult to do the old King Canute, but so far I lie in bed and try and improve the old posture. My mother must have realised that I had a curvature of the spine at a very early age because she used to make me sit with my arms through a coat hanger !! Anyway it seems to be helping, a bit like a rolling pin. I wonder if I am any taller?

Keep us updated.

As always, my dear Forum Friends, take care, stay safe, be kind to yourselves and keep on smiling.

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Oh @Erica reading about your Mother making you sit with arms through a coat hanger made me burst out laughing :rofl:

Love the way you bring this humour into your posts on the forum.

Made my day

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Hi @Jimbo165,

Thank you for the report, ‘however’ and all. It’s good to hear your bloods are relatively stable and the platelets are in a good place for you, and I’m glad you got to see the consultant pharmacist about the itching. I hope the changes make a difference; do let us know how you get on.

Fingers crossed for the Fibroscan next week. And full marks for making the early morning swim with two sore arms! I’m off to get my Covid & flu jabs today (though unsure if they’ll go ahead, as I’ve got a nasty cold!).

Ceri

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