ET diagnosis finally sinking in

[Rosita]

Hi, I was diagnosed with Essential Thrombocythemia last year after a lot of testing including a bone marrow biopsy. I am connected with an oncologist/haematologist. I am a 54 year old mum with two teens & work full-time outside the home. I am based in Canada & found this forum via a search (it is the best one for blood cancers I have found -everyone is so supportive).

I am in a wait & see phase right now with blood work tests every 3 months, oncologist visit every 6 months, on low dose aspirin. The plan right now is to continue to monitor & if my platelets go over 1500 or I reach age 60, then I will be put on hydroxyurea.

My symptoms are fatigue (but not sure if that is from my work load, homelife or the cancer), tingling/burning hands/feet, and bruising very easily.

I understand my diagnosis & accept it, but still find it hard to remember that I will be living with this for the rest of my life, as I do not have one of the more traditional cancers (that go through surgery, radiation, chemo etc. & then if you are lucky, you ‘beat’ it). There has been a lot of initial support from loved ones after sharing the diagnosis but it’s all faded away as there are no visible symptoms.

I have been feeling that I am running out time for a healthy life before symptoms get worse & the oral chemo drugs begin, but that might be a mindset that needs to be adjusted for me. I am also not prioritizing my health & am pushing through the fatigue etc. as the cancer is invisible to others & myself (most times).

I would love to hear from others that have Essential thrombocythemia (ET) & how they are faring long term & what steps they took to make their health the number one priority in their life. Thank you in advance!

[Duncan]

Hello there @Rosita, a great big welcome to the forum! I’m really sorry to read of your diagnosis and concerns. I see you already have a great handle on it but that doesn’t help so much with the anxious thoughts that it brings up though, right?!

While I was diagnosed with Polycythaemia vera (PV) last year, a different but very closely related Myeloproliferative neoplasms (MPN) to Essential thrombocythemia (ET), I empathise with and have experienced much of what you describe so well. I’m also outside the UK but have found that we’re all speaking the same (dry, medical) language and treatments for these MPNs are similar around the countries represented here by survivors such as ourselves.

Unfortunately more than 80 % of us with these MPNs experience fatigue. It’s so common it has its own acronym, cancer-related fatigue (CRF). Based on what folks here have experienced, my haematologists and phlebotomy nurses have explained, and after attending a blood cancer conference, sounds like the fatigue is caused by blood overproduction which can wipe out our energy. The fatigue is also worsened by the treatments and stress we feel, and I’ve found it’s helpful to try to get on top of anxiety to reduce the fatigue.

Being on wait and watch AKA active monitoring would be my ideal treatment! It sounds like you’re likely at low risk of clotting if you’re not having phlebotomy or taking chemotherapy like hydroxyurea. I’m considered at high risk of clotting as I had a clotting event years ago, but am considered a young survivor. I’ve taken daily aspirin for years and haven’t had any side effects from that, should that be a concern.

Sadly the tingly hands thing is common with MPNs. It’s something about our blood becoming hyper-viscous and being able to reach thinner veins in our extremities. The ease of bruising is a common side effect of our thinner blood—look forward to random bruises in places you don’t remember bumping!

Something my haematologist reassured me of, and I’ve heard that others have been told the same thing, is that we’re more likely to die with these MPNs than from them. It can be hard to believe at times when the fatigue has wiped us out again, or the invisibility of our illness means people may not even accept we have these blood cancers, but I like the idea that I could lead a long healthy life with some minor adjustments.

Something I’d say to be more careful with is your skin in the sun. We’re more prone to skin cancers now and I’m sure wearing some sun lotion is not a big deal, if you don’t already use high SPF. I live in California so was careful even prior to diagnosis.

As for the worries, well I hope finding this forum will help. Perhaps you have a close friend or family member who you can be totally open with about all this? It sounds like you’re experiencing people standing back a bit, which I think is pretty common as the big C is so scary for some people. This forum has really helped me a lot in expressing my anxiety about living with Polycythaemia vera (PV) and I find there’s always someone caring and empathetic here to share with. I hope it comes to be a supportive place for you too, @Rosita!

[Jimbo165]

Hi @Rosita, and welcome to the Forum. I’m a 59 Y/O Dad and Grandad and was 52 when I was diagnosed with Essential thrombocythemia (ET), with the CALR mutation. This followed on from my first (to date!) heart attack some 6 months earlier.

As you have intimated, Essential thrombocythemia (ET) is a mostly hidden/invisible cancer and you can often feel like a fraud. However, we aren’t frauds in any way, shape or form. It can be difficult to put into words just how tired we feel; although whether that is due to the effects of the cancer, or the treatment, and in my case coupled with my comorbidities and age I can’t say. I also suffer from tingling and burning hands and feet and bruise so easily that I am sometimes known as Peaches at work! (Bless my coworkers!)

I am on Pegasys injections, and have been for 6 years now. It still feels unnatural to be sticking pins in myself on a regular basis!

Sadly I am not very good at taking care of myself having always been the one doing the looking after of everyone else, but I am full of good intentions in that direction, but fail miserably at the implementation!

I still work full-time, just, but would love to be able to cut back some now.

Feel free to ask any questions, and at any time.

Take care, stay safe and be kind to yourself.

Jimbo165

[Erica]

Hi @Rosita welcome to our UK forum and it is just worth remembering that that treatments and drugs might be different in Canada.
I have another blood cancer, I was diagnosed at 53yrs old, I have a son and was working full time and I have been on watch and wait (active monitoring) for 20yrs.
My thinking has changed over the years and I now think I am a very lucky girl to be on watch and wait.
I have really looked at myself and how I tick and now manage my fatigue and other symptoms on a daily basis
Yes, I look well and have a default smile, my pet hate is people saying;'oh, you do look well; when I might feel really rough.
Look after yourself as well as you do you do your teens and try and pace yourself

[Mills]

I’m a couple of years older than you and last year was in a similar situation with a diagnoses of Essential thrombocythemia (ET) with about the same platelet levels.

Fast forward a year on hydroxea (2 tablets a day plus a couple of extras at the weekend) and my platelets are around 380 almost normal and I have no side effects apart from a bit more sensitivity to sun exposure (definitely start wearing sunscreen in the summer)

So please don’t fear the progression of “chemo” it may just be another tablet to take on a daily basis like your aspirin and after a while you will almost forget about what you are actually taking.

So please don’t worry too much life could progress almost as it was before your diagnosis. Hopefully my story will give you hope that having Essential thrombocythemia (ET) need not be too dramatic.

[Rosita]

Thank you very much for sharing about your experiences & knowledge. It is much appreciated & doesn’t make me feel so alone.

[Rosita]

Thank you for the words of reassurance and sharing your experiences especially with fatigue. I am slowly listening to my body more & stopping instead of plowing through like I used to.

[Rosita]

Thank you for the welcome & for sharing your journey. I appreciate the advice!

[Rosita]

Thank you for the reassuring words! It is overwhelming and gives me hope.

[Erica]

Hi @Rosita
How are you feeling and doing now?
Look after and be very kind to yourself

[Duncan]

Aw you’re welcome @Rosita. How have you been getting on? Have your fatigue and tingly sensations reduced? Hope all is well!

[Happy2019]

Hi
I’m in the same boat as you.
Was diagnosed in Feb this year. Total shock. And if I’m honest I’m still in shock.
Platelets go up then down.
I was told it’s a good one to have! Well thanks but I’d rather not have it.
Have good and bad days thinking about it all. Try very hard not to get stressed which is easier said than done.
All I seem to do is yawn and sometimes, not all the time could just fall asleep!
So glad for this forum for likeminded people to understand us

[Erica]

Welcome to posting @Happy2019
I certainly related to your post about the total shock, I was given my diagnosis by a gynaecologist and I was in shock for a very long time.
Yes, my blood tests go up and down too
Who would ask to have a blood cancer diagnosis a ‘good one’ or not.
My emotions have been on high alert ever since and that was 20 years ago. I have never dealt with stress as well since either.
I will copy the Blood Cancer UK details on fatigue for you.
Blood cancer and fatigue | Blood Cancer UK
I now find that fresh air and appropriate exercise often helps me and stops me yawning.
Other times I might need to have a nap or duvet dive, but that can mean that I do not sleep so well at night so it is all about getting to know how you tick, my fatigue can be triggered by stress, emotional, medical, physical and practical things
Give yourself time and really look after yourself and please do keep posting

[Rosita]

Welcome @Happy2019 .
Quick update on my end -tingling symptoms are still present but now have numbness with it, and a feeling of fullness on my left side. Dr. Google has told me that the fullness may be due to an enlarged spleen, but need to consult with a real doctor Am in the process of moving up my next appointment due to these symptoms. Will keep you posted once I get more info/answers.

[Gillyj]

Hi Rosita- do good to read your posts- as the others have said it helps us to feel not alone. I’ve only recently been diagnosed and start on interferon this week. My spleen is slightly enlarged and the consultant said I may get feelings of fullness there. So far I’ve not got any symptoms other than fatigue, which I used to push through but now I’ve had my diagnosis I listen to my body more- if I come in exhausted then I’ll sit for an hour which boosts me for the rest of the day, something I would never have done before. My family , especially my husband, is very supportive, and I think it helped him that he’s read the Myeloproliferative neoplasms (MPN) booklets and I tell him what’s said on this forum. Stay strong - we’re all in the same boat! I do take comfort from the thought that although we will never be cured our condition can be well managed for the rest of our life

[Duncan]

Hello there @Happy2019, welcome to the forum and apologies for missing your posts until now. I’m so sorry to read that you were diagnosed with Essential thrombocythemia (ET). You describe the shock of diagnosis so well. Even now a year since my own diagnosis with Polycythaemia vera (PV), another Myeloproliferative neoplasms (MPN) like Essential thrombocythemia (ET), I occasionally forget and then feel horrified all over again.

But, if I may offer some support from further along since diagnosis, the shock does fade. It becomes a bit like a scar—still there after the initial surprise, but not so painful to live with as time passes. I hope it comes to feel easier for you. Try to banish stress with healthy distractions and living well as it can really affect our energy levels I’ve found, and it sounds like your energy is affected already.

I wonder how you’re doing now @Happy2019? Perhaps the fatigue has faded a little? You may find that depending on the treatment you have (or not) your energy levels will continue to be a bit all over the place. Apparently over 80 % of us with these MPNs will experience cancer-related fatigue. If fatigue is getting in the way of your activities I can recommend some simple researched ways to improve your energy levels.

Maybe you’d appreciate this Blood Cancer UK information about MPNs and Essential thrombocythemia (ET) specifically, I think they’re really well written: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK Essential thrombocythaemia | Blood Cancer UK

Glad you found us @Happy2019! Do let us know how you’re getting on.

[Duncan]

Hello again @Rosita, I see you’re supporting others on the forum which is lovely.

I’m sorry to read of that feeling of fullness, perhaps it is from your spleen, although I am no doctor. Don’t know if you knew this but according to my haematologist our spleens can sometimes start to produce blood due to the MPNs we have that make our bodies overproduce blood cells. Most of our blood is made in our pelvic bones, hence why we can get those aches and pains there, but also in our spleens and occasionally even our sternums. Kind of grosses me out, to be honest!

Really pleased to read that you’ll take your symptoms to your doctor, I hope they reassure you better than Dr Google!

I hope it goes well with starting the interferon and adapting to it. I’m sure you’ve read about it, but have a look around the forum as there are plenty of Myeloproliferative neoplasms (MPN) survivors here taking it with great efficacy.

[Duncan]

Hello there @Gillyj, welcome to the forum to you too. Sorry not to greet you until now. I’m really sorry to read that you’ve been diagnosed with both Essential thrombocythemia (ET) and Chronic lymphocytic leukaemia (CLL), wow what a double-whammy when one is quite enough! Well, none at all would be preferable of course but here we are.

I see from your initial thread that you’ve asked some great questions about what might happen with interferon treatment and others with experience of it have responded. I hope with time you’ll find other great advice and continue offering your own. So much of this survivorship is personal to each of us, but I think sharing here can help us feel less alone like you say.

It’s really great that you’re heeding any fatigue you feel and following what your body needs. If my own experience of Myeloproliferative neoplasms (MPN) treatment is anything to go by, hopefully your fatigue will fade as your body gets used to the interferon disrupting the blood overproduction.

Glad to hear the Blood Cancer UK information has been helpful for your husband and family. Mine has said similar, plus I think it can get a bit overwhelming with me going on about it all and using all the blood cancer jargon. Sounds like Latin to my fatigued brain!

Keep us posted about how you get on @Gillyj, really glad you found the forum.

[Gillyj]

Thank you @Duncan for that welcome. Yes it was a double whammy as you say, and totally out of the blue as was just found during a health screening I have done privately every few years. But I have now accepted it as something I have to
Live with for the rest of my life.
I did my first injection yesterday and although I’ve given others injections I’ve never injected myself- I was very surprised that the needle didn’t hurt at all! After a few minutes the area stung a bit for about 30 mins and during the course of that evening I had a couple of hot flushes, quite used to those as had them the whole time when I was going through the menopause! But no other side effects so am off to play tennis this morning. I assume this might change as my dosage increases?
I also need to find out what to do with used needles- I haven’t been told

[Gillyj]

@Duncan or anyone else- I forgot to ask what I do with my used needles? I’ve just bought a small sharpies box but do I close and throw with the rubbish or do I take to a pharmacy or hospital/ what does anyone else do? Basic question I know but not been told! Thanks