59 year old female.
I
was diagnosed with ET in april and am currently on 1000 mg of hydroxcycarbamide and 75 mg of clopidogrel . I would have gone with interferon but covid ruled that out. Fatigue seems to be my main problem.
Recently I had a small growth removed from my lung which has turned out to be cancer and although I have opted for a lower lobe removal I feel lost, bouncing between "oh a growth that was cancer" and " argh I have lung cancer".
Given your treatment regimen, it sounds like you must have had a thrombotic incident. Sorry to hear you could not access PEGylated Interferon as your first choice. Perhaps you will be able to switch at some point. Not sure if you had the fatigue before HU, but it is a very common side effect. Hopefully the doc went over the stuff you need to know about HU since there are precautions to take due to its toxicity.
Sorry to hear about the lung cancer. Like having a blood cancer isn't enough. It is very important to monitor for secondary cancers as those of us with MPNs are more prone to other neoplasms. We really do need to take a very proactive stance in taking care of our health. I had a brain tumor removed last year and a tumor on my mandible this year. Both were benign than goodness.
Please keep us up-to-date on how things go. All the best to you.
The growth in lung had been there years and on last year's scan hadn't from this year it had, consultant my med wouldn't have caused growth not sure I believe that.
it's good to hear your cancers where benign.
While hydroxyurea is a carcinogen, if the growth was there before you started, it is more likely related to the MPN or some other cause. HU is also a mutagen, so I suppose it is possible it could impact an existing tumor, but I doubt that would happen so quickly. Unfortunately, the reality of MPNs is that we are more prone to other neoplasms too. That is why routine monitoring is not just routine for us. It is critical to do the monitoring for colon, prostate, breast, lung and skin cancers. The latter is especially important if you take HU (includes oral cancers).
Wishing you all the best for a full recovery and no recurrence. I have learned to be very proactive now in managing my health. I do all "routine" monitoring. I have changed my diet to more heavily plant-based, reducing/eliminating exposure to toxins, hormones, BPAs, xenoestrogens, antibiotics, etc. Basically Mediterranean/anti-inflammatory diet. It really does make you feel better and is better for you.
All the best
Hi there, I am 59 as well and am on the same meds as you. Fatigue is a major player in my life as well. I would like to say it goes away, but for me it has not. You have to learn to roll with it! It's not satisfactory and some times along with other things that crop up it seems to get to much and you cry and moan about not understanding and the good people on here rally round with support and suggestions even though they might be in a worse situation, because everyone respects that what an individual is suffering is unique to them.
So all those worrying questions, ask away. There will always be someone with some to listen. Hunter and Socrates along with many others are very knowledgeable, Maz the organiser has official information and people like me might only be able to supply understanding and fellow feeling, but when you are alone in your head, that can be worth its weight in gold.
So try not to worry about getting back to ' normal ' there can be new normals 🤗
( typed from my bed because exhausted today! )
Sorry to hear about the double whammy with the lung cancer. I have post Et mf and have been on hydroxy since 2008. Fatigue is a major part of life with ET, and sometimes, our meds exacerbate it. Drink lots of water, rest when you can, and light exercise helps, as well.
Please keep us updated on your progress. Wishing you all the best.
hi Ciye, so sorry to hear about the lung cancer, I hope all goes well for you with the next procedure.
With regards to the fatigue, this is one of the worst symptoms that people with MPNs suffer, in varying degrees, and it is horrible, we have some information on our website that might help, and a link to our leaflet 'fighting fatigue in MPN'
mpnvoice.org.uk/living-with...
Hope it helps. Best wishes, Maz
Hi ciye
I recently diagnosed with ET ... do you take pain killer at the first time diagnosed for the pain ???
Critical illness cover for ET
ET , newly diagnosed and have a couple of questions.
How soon should HU for ET work?
ET JAK 2+ CBD patches 
