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.