MPN Voice
3,182 members4,831 posts

New with ET and this week I completely fell apart

I was diagnosed with ET in late August with fatigue and lightheadedness being my primary symptoms. I'm JAK2+ and my latest platelets are 800. I take a daily aspirin.

My oncologist has no idea what to do and has told me that I'm her first ET patient. She says the chemo is "evil" and she won't start me on it till my platelets are 1500.

This week my community in Northern California (I'm a eldercare executive) received 70+ evacuees from a retirement community evacuated due to fires. I worked 12-15 hour days. By the 4th day I completely came unhinged. I was so tired and my head was pounding. Also my thoughts weren't clear...it was as if my mind was getting pixelated and I couldn't see the full picture. My colleagues thought I'd lost it and were pitying me ( they really have no idea what ET is). I know I overextended myself but the situation was dire and I had no choice.

How do you explain ET and your fatigue to people who have no idea what you're going through? How do you deal with the fatigue without feeling like you're letting people down?

Thanks for your help.

23 Replies
oldestnewest

Hello Mary, welcome to MPN Voice, you could not of found a better place.

I have ET JAK2 positive was diagnosed over four years ago now, like you it was a terrible shock to say the least, similar symptoms to yourself and think my ill health had been going on for many years. I found it hard to tell my family and friends to start with, they could not believe it as I always looked so well as I have always prided myself in the way I look hair always done and makeup applied never left the house without either done or applied, and I am 68 now, I take daily Hydroxycarbamide daily, two on Saturday and Sunday, enteric coated Asprin daily, and numerous other tablets for blood pressure and an underactive Thyroid, and so far so good, platelets are all within the normal range now, long may it last, and I must admit I feel so much better in myself, mind you I do keep fit daily, drink at least two litres of water a day this is a must when taking Hydroxy, also eat a very healthy diet of plenty of fruit, veg, nuts, try to avoid to much red meat but enjoy fish and chicken, oh and the occasional glass of wine.

Our coordinator at MPN Voice is Maz, she should be able to send you some booklets reagarding your ET this helps you understand it more, we are a very rare breed and go on to live a normal life span, it is just puts a name to the way you have been feeling properly for many years. For me now I have never felt so well, and think this is down to the Hydroxy. I attend hospital every four months to have my bloods checked, had a couple of up and down times like a total knee replacement but all is good now.

So Mary keep talking to us we are all here for another, and there are plenty on here with good advice no matter what MPN we have.

Hope the fires subside soon, so many peoples lives have been ruined, but sounds as if you are doing a grand job.

Take care

Jean x

2 likes
Reply

Thanks, Jean. It helps so much to be connected to others going through this & to know I'm not crazy.

Reply

Oh gosh you are not crazy just special!!! The trouble is that because you do not look unwell people cannot understand what is wrong with you. I have friends say but you look OK cannot believe anything is wrong with you which sometimes makes me cross but now I do not bother to say anything. One thing I would advise you do not do is go to Dr Google there are some very frightening things on there, if you have any questions just come to the Voice we are all in the same boat and we help each other, some are watch and wait others take like me different types of drugs, I suppose I am lucky the Hydroxy has been good for me, life is much improved, still get the odd day of fatigue, but listen to my body and rest until it passes, sometimes this is hard as I have a very busy life.

I know we have the time difference with yourself, but there are people on here from all over the world, and we all share our experiences it is a great place to be.

Jean x

2 likes
Reply

Thanks Jean. I appreciate knowing I am not alone.

2 likes
Reply

I’m not surprised you felt like you were falling apart! Being newly diagnosed is often quite a traumatic time no matter how hard you try to ‘keep it together’. I think it’s highly unsettling for just about everyone - you’ll have seen numerous posts on this Forum. And on top of that you’ve been dealing with what appears from our news reports to have been a traumatic event for the Californian community. Working long days in what must be incredibly stressful circumstances for both your elderly clients and your staff is bound to take its toll. Go easy on yourself. There is a ton of information on MPN Voice and the glossy booklets are incredibly informative. It’s not an easy explain and people do take time to grasp it (don’t we?!). And they do need regular refreshers! Take care of yourself. Xxx

Reply

Thank you. Just knowing that others experience this is some comfort to me. I just want my old self back and fear that may not happen.

1 like
Reply

Hi there firstly you don't say how old you are it seems from what I've been told and have read most patients under 60 are treated with asprin until they turn 60 and then are put on some kind of drug, usually the first line one Hydroxy. I'm 67 and was diagnosed with ET and Jax 2 2years ago, I had been misdiagnosed for at leat 6 years it was bad headaches and blurred vision that took me to my GP, blood tests were done, my platelet count was 950, I was referred to a heamotologist immediately and put on Hydroxy straight away. Others have told you what is important once you've been diagnosed I would endorse all of that, for me the all important thing is keeping hydrated. I was scared about taking the drug, it is cancer of the blood and it is a chemotherapy drug but apart from close friends and family I've told everyone I have a blood problem and that my immune system has gone into overdrive and that I take a drug to correct it. For the most part I feel much better on the drug and my platelet count has come down to a normal range. The drug itself makes you feel tired, we have to all listen to our bodies and rest when necessary which is probably more than the average person. If I were you I'd be tempted to ask to see another oncologist or heamotologist who knows about ET, I'm no expert but a count of 1500 sounds pretty high to me, the normal count is 400. You need some sound advice and treatment and then you can move on and cope with it, which you will. Good luck

2 likes
Reply

Thanks, Linda. I'm 55. The fatigue is overwhelming at times...it's hard for me to comprehend that the chemo may also make me fatigued. Oh well, I have so much to learn.

Thanks for your response!

Reply

Hi Linda,

I have been newly diagnosed with the JAK2 and am awaiting results from a bone marrow biopsy. I am 38 and read that you mentioned under 60 being treated with aspirin until 60 then treated with something else like Hydroxy after 60. Do you know why that is? This is probably a good question to ask my Dr. Thank you.

In Love and Light,

Amber

Reply

No idea; still trying to find a doctor who knows ANYTHING about ET.

Reply

Hi Mary I see your from the US, I was diagnosed about two years after another cancer. I was devastated also and my counts are nearing a million. I am well over 60, work full time and I am a caregiver to a 95 year Mom. So I feel you for sure. I see an expert in the MPN field who feels the same way your Doctor does and your a lot younger then me. I was on HU and the expert I see took me off of it, had a hard time working on it. I have been off of HU for about two years and it never really did hit my platelets. I will probably be on something soon but I am hoping to try the new Interferon, trying to hold out until it hits the US. HU as we call it can be a life saving drug for some and I think we might be in a good time as there are so many advances in this disease. I really do not suffer with fatigue but most do. This is a good site with many wonderful people but also there is many facebook forums in the US with lots of people in California, you might want to check that out also.

1 like
Reply

Thanks Mickey!

Reply

I sympathise with you as I can't tell anyone how I'm feeling. I feel pathetic when talking to Doctors and being continually brushed off and friends and family just give me "a look" of disbelief, so I tend to avoid social outings and keep my feelings to myself, except on this site. I haven't read any suggestion for explaining our symptoms to people that would work so far 😿

1 like
Reply

Hi Mary welcome to our forum, I can’t add much to the advice you have been given, apart from how to explain your ET to people, have a look at this information on our website

mpnvoice.org.uk/living-with...

Best wishes, Maz

Reply

Thanks Maz! That was a very helpful resource.

Reply

Hi Mary, I don’t know if you’ll see this since you posted long ago but on the chance that you might..., I’ve read postings by many people on here who said being on hydroxyurea reduced their symptoms of fatigue. I also learned at a program that fatigue is a problem in all 3 MPN’s and it isn’t a result of Hydrea. I don’t think Hydrea affects everyone the same though. Good Luck, hope you’re doing better. Katie

PS. I’m also in the U.S. as are a number of members of this forum and you should be able to find a specialist who, if not near you, can oversee your care by a local hematologist/oncologist.

Reply

Thanks Katie! I just changed oncologist and got a new diagnosis...PV with high platelets. Peg interferon to start soon.

I appreciate your support and encouragement.

Where in the states are you? I’m in SF east bay.

Reply

Hi. I live in Wisconsin in summer & fall & Florida in winter & spring. Great news you have an oncologist who knows MPNS & can take good care of you. Katie

Reply

I have only just spotted this thread but somewhere I found this definition of ET which I feel gives a general idea to others about what we are dealing with. (These aren't my words but I was given permission by the writer to copy and use them.)

Unlike other cancers, ET does not metastasise out of the blood stream to produce cancers outside the blood stream. But like other cancers, it is about proliferation of cells albeit not special "cancer" cells but of excess and immature platelets.

It is often termed "chronic" because the progression it does have is very slow, giving us a long prognosis. Over the long haul, the effect of over-production of platelets is to produce scaring in the bone marrow, eventually converting the diagnosis to myelofibrosis or MF. In that stage, the bone marrow's ability to produce other blood cells generally begins to decline, producing anaemia and possibly leukaemia. But we are talking decades. I have met people who are 35+ years since their diagnosis and are still out and about.

The truth is, many of us will die of some other disease before this disease takes us. We are at higher risk of blood clots and must take precautions to reduce that risk. The good news we have, different from many other cancers, is that there is time for better treatments to be found.

3 likes
Reply

Thanks! This is great!

1 like
Reply

That seems odd?? I'm in Colorado and the oncologist and my GP monitor by HGB level and we set a target to stay under 15 g/dL. My platelet count is now at 445. MY GP and Oncologist BOTH were concerned at my pre-level of 22 g/dL. My platelets were 415 at that time. You didn't mention an HGB level.

I was and am on 500 mg of hydroxyurea daily, a baby aspirin and monthly phlebotomy if above 15 g/dL. I haven't suffered any side effects that I can tell.

Your tired because you probably have very little iron, ferritin and if you try to raise it with vitamins etc. you'll send your HGB sky high.

I have had days where my BP drops to 90/60 and stays there 2-3 days in a row and then goes back to normal. I had one day when my blood was so think they couldn't start the phlebotomy, a 16ga needle plugged, and then a day or two later my draw took about 4:30 which is the near the max rate they can draw it out. The Dr.s just shrug it off and say "who knows?"

Fatigue and muscle pain can come from thick blood and your heart working harder to pump it and thick blood doesn't flow through your muscles as easily, so any lactic acid build-up is slow to dissipate.

The fatigue is a real issue but I remind myself the best way to help the poor is to not become one myself. Same goes for burning out, gotta take care of you so others can help those who can't take care of themselves.

Good Luck!

1 like
Reply

New oncologist now...starting peg interferon this week. Wish me luck!!

1 like
Reply

Praying for you

1 like
Reply

You may also like...