Ups and downs of ET

[Modesigns]

It is 18 months since my Essential Thrombocythaemia diagnosis, and almost a year since I began taking a daily tablet of Hydroxycarbamide.

Since I spoke on here maybe a year ago, I have retired from teaching singing…a major change in my life, even though I was only teaching part time. It was a very busy year, trying to give students opportunities to perform, and we had a lovely concert at the end of July from which we raised almost £900 for a Ukrainian Musician refugee from Donetsk to help her and her musician partner to settle in London. It is a mixed blessing having retired. Keeping my own voice in trim while teaching, has, I realise, been a very positive thing, and it is time to get back practising, even if not teaching! Very good for the breathing and re-oxygenation of the body!

I had my last blood test results and telephone appointment with a haematologist yesterday, only to discover that while I had previously gone from a reading of 800 platelets to 460 over 9 months, my latest reading was 496! So the new regime will be a daily dose of Hydroxycarbamide, and an extra tablet during the weekend, and my next appointment is being brought forward to a 2 month, not 3 month gap. So yesterday was one of the downs!

Meanwhile I have been participating in the Zoe Health Study, the Big Intermittent fast study involving 1.3million participants. I have been eating within a 10 hour window, and fasting for the other 14 hours. I usually eat within in a 6-7 hour window with an 18 hour hour fasting period, changing only WHEN, not WHAT I eat. What was encouraging was having more energy, and rarely needing to have a daily rest. I have been doing this now for 54 days. Walking is faster, as is the energy to do it. So that has been a welcome ‘up’ for me! Am happy to do what it takes to recoup energy!

The rising platelet levels have urged me to complete my Power of Attorney papers! The things one puts off!! They need to be signed and sent as hard copy, but they have been paid for, and submitted online, so the first important stage has been completed. Not that I am about to pop off, but having almost reached 76 years, it was time to make things easier for my family! Now there is the loft to deal with, but I have no desire to fumble around in there while it is feezing cold!

[Erica]

Gosh what a year @Modesigns it must have been a big step on many levels to have retired from teaching, I remember what a big, enjoyable part of your life it was.
I was worn out just reading your post. I am also a great walker but this year I have not gone out if it has been raining hard, but hot or cold I can do. Often I do not know where my feet will take me,
Yes, although I had not thought about it I probably do the fasting diet without knowing it.
As for your platelet count after I was diagnosed I came home and wrote my will and funeral music. That was nearly 19 yrs ago. We did our LPA’s this year and a good job out of the way, I am 72 yrs old.
I also took everything down from the top shelves in our flat on safety grounds. This meant a clear out, clean out and redistribution of everything.
It sounds as if your haematologist is on your platelet counts, although I know my thoughts and emotions would be all over the place.
Be careful when you do get into your loft.
Look after yourself

[Jules]

Morning @Modesigns like @Erica says you have been busy and do be careful in that loft. We almost had an accident getting our Christmas tree down this year and we were up and down looking for a box of baubles we had already bought down that none of us could see ! Now the loft is a mess as we opened every box thinking they were still up there …. So I too have a big clear out ahead … but it’s way too cold up there at the minute…. -5 today ! Here is a lovely image of a park by us yesterday.
I think this time of you brings lots of reflection on the year that has passed and the year that is yet to come.
Wishing you all the very best.

[Chris1]

Hi @Modesigns. I also have ET and I was diagnosed two months ago. I am also a retired music teacher, so I do understand how you are feeling, having recently given up your work, and, if like me, your passion. I taught woodwind and piano, and I am also a singer. I gave up singing in my local 120 strong cantata choir when I was diagnosed, as it was too much of a risk for picking up infections. We were just about to present Messiah in our local theatre so I missed out on that too, as the theatre holds over 400 people, and It was a sellout. I was put on hydroxycarbamide, but was taken off after two weeks due to a bad reaction to it. My platelets are still rising. I had a blood test yesterday and will get the results next Tuesday when I see the haematologist. I do hope the extra doses of hydroxycarbamide work for you. I am only on aspirin at the moment, until the Dr decides what next. Take care of yourself and try not to worry too much. At least you seem to be tolerating the hydroxycarbamide well, and there are other treatments if that doesn’t work. Stay positive and stay safe. Merry Christmas.

[Modesigns]

It was a big step @Erica, but as I am an artist as well, I was struggling to give time to both, and it is really time to put art first…though it is taking me some time to do that as many things have been held in abeyance over the past year. I am glad to have made the decision to retire, though financially not a good time to do so with the crazy financial situation we find ourselves in! Will cope!

I am not a great walker, but in the early stages of ET I was a very slow walker. My feet seemed to be wayward too! I often worried about cycles without bells running into me from behind when my gait seemed to be anything but straight, and thinking the cyclists would not know I may not hear them! I should have a big sign on my back! Please let me know you are cycling up behind!

Diagnosis concentrates the mind on the frailty of life doesn’t it! Though you have done inspirationally well, 19 years post diagnosis.

The loft will be waiting until summer I think! It is high on the list, but simpler things will be done first!

[Modesigns]

@Jules - what a lovely photo! Thank you for your best wishes, and for reminding me it will be jolly cold in the loft. I need to get the decorations down, but only have to climb the ladder and they are first on the right, then out of there smartlsh! Not so organised with other things in the loft!

All the best to you too.

[Modesigns]

Hello @Chris1…so sorry you have joined the ranks of ET creatures (ET always makes me smile!), especially after your retirement. It is interesting about infections. The whole Covid thing, and then the ‘No Covid’, or a pretence of that, has been a difficult one to handle. I have no idea whether I am likely to pick up infections, and alternate been playing safe, and trying to live as full a life as possible.I do hope you may eventually be able to sing again with your choir, or that you may find a smaller choir if it is important to you.

Music is a passion, though it now competes with art. I did a Diploma in Botanical Art, completing in 2018, in preparation for eventually retiring from teaching singing. I keep a Botanical journal in sketchbooks, and it has been a most wonderful way of distracting myself from more serious health considerations.

Which woodwind instrument do you play? Or should I say instruments?

All the best for you platelet numbers on Tuesday. Do tell us how the appointment goes.
A Happy Christmas to you too, and to @Erica and @Jules!

[Jilly20]

Hello Modesigns - well done on all accomplished since your diagnosis and the adjustments made - your fast programme sounds very good too I am an ET patient too diagnosed about 16 years ago - I had 13 years on Hydroxy and in recent years have been on Pegasys interferon. Just wanted to reassure you that a slight increase in platelet counts as you mentioned is actually very normal and doesn’t mean things are going wrong - platelet levels increase and decrease all the time in all people for many reasons, they can vary from one week to another - so the approach your consultant has taken is a normal part of the course for ET treatment an odd one or two extra capsules - my initial consultant used to call it “Hydroxy tweaking” and would up and down my dose regularly over the years - it’s a funny thing as there is no standard dose for ET treatment, some do well and are controlled with three or so a week for others it’s three or four a day - neither being right or wrong or worse than any other, just very individual. I say that so you may feel reassured as Hydroxy tweaks may well happen for you often and it is just part of you being cared for not anything adverse. It’s also normal when tweaking that appointments are a bit earlier than the 12 week checkup just to see what effect the tweak is having on the counts - again varying check up times can be part of the ET treatment game hope that may be some reassurance, and do keep us posted how you get on. X

[Chris1]

Hello again @Modesigns. My first reaction when I found out that I had ET was, oh! I always knew I was an alien . I was very interested to hear that you have studied botanical art, as my other passion is growing plants from seed and cuttings. I have always admired the amazing artwork that the botanical artists do at the RHS Wisley. The main woodwind instrument that I play is the flute, with the clarinet being a close second. I also seem to be doing the 10 hour fast unintentionally, but I still suffer fatigue quite badly. I did notice that while I was on the Hydoxycarbamide the stiffness in my legs decreased and I was able to walk much faster. It’s a pity that it didn’t suit me for long term use. I will let you know the outcome of my next dr’s check up. I am wondering if my platelets have reduced, but that’s probably wishful thinking on my part.

[Colinb]

I was diagnosed in April this year with ET, treatment initially was daily hdroxcarbamide but results didnt pan out an also take double meds now on sat and sunday. Apart from headaches the biggest thing ive noticed is i can drop off to sleep anytime, 10 mins downtime at the computer an i can drift off, sit an look at telly and i will drift off, as long as im actively doing something im fine but otherwise im away. I was diagnosed with sleep apnea years ago but couldnt get used to CPAP machine but dont know if medication is exasperating symptoms.

[Chris1]

Hi @Colinb. I have noticed that I sleep during the day, which I never used to do. As ET is a slow developing cancer, then I guess it must be the effects of the drugs and not the ET itself. I am only guessing. After a bad reaction to hydroxycarbamide, I was taken off it, but spent six weeks with my immune system trying to repair the damage. That took a lot of energy, so that could be why I tire quickly. I am only on aspirin now, but still get tired more than before. If you had sleep apnea before, then it might be an idea to speak to your doctor about it, just to make sure. It might be something they can treat.

[Modesigns]

@Jilly20 that is reassuringly comforting. I am very pleased to be being seen earlier.

@Chris1 I have a small garden, but pretend it is huge!Have begun collecting and planting my own seeds as well. The Wisley botanical artwork is the sort of thing I doing too. It seems the platelets have a will of their own! After @Jilly20’s comments I think I will just put them out of my mind!

@Colinb I took one Hydroxy tablet without food, and then half an hour later I just needed to sleep. I lay down and was completely out for the count for 3 hours without moving. I decided then always to have with food. I think @Chris1 that tiredness is also a symptom of ET, and as I look back I can remember similar sleep urgency, although not as dramatic, over a number of years prior to diagnosis.

A Very Happy Christmas to all of you.

[Chris1]

Hi. @Modesigns and @Colinb
It is good to get input from other ET sufferers, especially those who have had it for a long time, as it helps me to build a picture of what is to be expected. I am still hoping for a reduction in platelets next Tuesday, as I am trying to delay being put on Anagrelide. You must be a good artist @Modesigns, as the RHS botanical artists are superb. Perhaps you would consider posting some of your work on here to cheer us all up during these dark days of winter.

[Modesigns]

@Chris1
Here is part of a painting done during lockdown.

[Erica]

Oh @Modesigns that is an absolutely beautiful painting, thanks so much for sharing it, you really have a natural way of painting.
Look after yourself

[Modesigns]

@Erica - Thank you! It was fun to do.

[Willow]

Absolutely stunning @Modesigns! Thank you so much for sharing with us. I think you could hold an exhibition of your artwork, although if I had produced anything like that I certainly wouldn’t want to part with it! You are very talented. Warm wishes. Willow X

[DickM]

Super painting, Modesigns. My wife did the Diploma of the Society of Botanical artists some ten years ago, having always been interested in botanical art, despite being a physicist by training. Sadly, her Alzheimers now means all that is in the past, but we have a lovely portfolio of her work for the Diploma, which is a reminder of better times.
With regard to your platelets “leap” to 496, I’d be over the moon if mine were that low! They’ve never really dropped below the mid-500s in the nearly 10 years with ET and 1000mg of hydroxycarbamide per day. Apart from brittle nails, not even any side effects.

[Chris1]

Wow that is very good @Modesigns. Thank you for posting it, and it is certainly going to bring cheer to all who see it. I saw my haematologist today and unfortunately my platelets are up again to 623 from 605. I managed to get the Dr to defer putting me on Anagrelide, so for now I remain on just the aspirin. Apparently the guidelines for someone my age, 70, is to put patients on the drugs, but younger patients with the same blood platelet count would only be given aspirin. I told him I am a recycled teenager. He did agree to let me stay on just the aspirin for now. As I react badly to lots of medicine, I had a strong case for holding off until I really need them. He said that he would need to give the drugs when the platelet count gets to around 1000 to 1500 which is the guidelines for a younger person.

[Modesigns]

@Chris1, @Willow, @DickM, and @Erica, thank you for your kind words.

Am so sorry your wife has Alzheimers @DickM. Wonderful that she did the SBA Diploma, and the portfolio to treasure. I know a good number of SBA artists and tutors, and so many are very talented. I have exhibited at the SBA exhibition about 4 years ago. Covid has intervened! My numbers have been up to just over 800, which was when I finally gave in and decided to take the Hydroxy.

Good for you on being the recycled teenager @Chris1! I pretend! But doesn’t always get me too far! Am about to do a concert tomorrow…there is always that thought that the truth about age and degeneration will out, and and I will fall on my face!! Have decided, after retiring from teaching, that it is a good idea to keep up my own practice. I think the breathing in particular is energising. A good workout! Maybe you find that playing the flute and clarinet as well?

@Willow - Thank you! I haven’t done an exhibition for some time, but need to have some work prepared for reproduction, and then do an exhibition or present work for group exhibitions. I am looking forward to doing so. It is wonderful to have something that is totally absorbing to take ones mind away from frailties!

A Very Happy Christmas to you all! And here’s to health and new adventures in 2023!