My father in law was the first cancer patient in our immediate family. We were all very positive about his prognosis, but what we didn't understand was that in his case it could only ever be a managed decline, and the inevitable end.

We are far more fortunate, but in most cases there will be not such thing as normal ever again.

I certainly don't want to come across as negative, our diagnosis can be managed, we can live a full life.
But whilst our clinicians manage our condition we must also learn to manage our expectations, and for many that will involve the side affects of the meds. And that's what this group is for, to support and fill the gaps that our clinicians can't or won't dicuss.

As we say here..

Chin up, chest out,
best foot forward.

Hello all, Soon to be 80 Year old Male , diagnosed PV for 4+ years. The post, top of the chain , by AndrewRudge ( May 9 ) is incredibly profound… Go back and read it…I found it very motivating !

As for Rx , Specifically Hydroxyurea, my ‘short ‘ story. Went to Hematologist 4.5 yrs ago. ( First time) I had one lab. My Dr immediately put me on 500mg of Hydrox. 3x . After 4-6 months, dropped to 2x same dose. As the they, ‘ Been there, done that’ and continue. No significant side effects, yes some deep fatigue, early on significant night sweats, but faded on their own. They have slightly started to return….

I share not to brag or gloat, but rather to offer hope. I don’t dwell onPolycythemia. I don’t run to ‘ Dr Google’ 😊 for every little’ thing’. I keep active. I ride my e-bike plus I bought home exercise ( a true first for me) equipment, based on my Hematologist suggestion to do something to keep my blood circulating. ( I do take 81mg aspirin per my Doc) Lastly, the absolute joys of my daily life. Two Ragdolls ‘ Kitty’s’
they keep me going. I hope this was helpful. Don’t give up and please go back up and read AndrewRudge post dated May 9

All the best,
John

I started hydroxyurea when I was first diagnosed in 2020. The dose was adjusted a little. But I was on it for five years and really found that it was not the best drug for me. I then went to get a second opinion at Cleveland clinic and ended up switching to Jakafi. That toes has now been adjusted once and it’s sort of a wait-and-see. I’m also on a blood thinner because I continually get clots in my liver. There is something promising in the future, but it’s still in the future. There’s a machine called a CRISPR but they are not using it in human beings with our condition at this time. What it does is, it goes in and zap the bad genes. So in my case, that would be the Jak 2. What they’re concerned about in terms of using it with humans at this time is that it might also zap good genes, not just the bad ones. This would be a total cure in my case rather than having a chronic cancer and I would sure welcome that however, I don’t know if it’ll be in my lifetime or not but fingers crossed.

It can take some time to get the dose correct. During this titration phase CBCs should be done about every two weeks. CMPs also need to be done regularly to monitor for adverse effects. Note that some people are refractory to or intolerant of HU. That is what happened for me. There was no right dose that controlled the erythrocytosis and was tolerable. The interferons, Pegasys then Besremi, have been much more effective and easier to tolerate.

It can be frustrating while trying to figure out a suitable approach. Please know that there are multiple options for treating the MPN. If HU does not work for you, that is not treatment failure. Instead, you discovered an approach that does not work. This allows you to move on to find a successful approach.

Wishing you success moving forward.

I have been on the dose discovery journey sine I started in mid 2024. My hematologist and I are finding a balance between HU and phlebotomy. I will never have “normal” blood counts but there is a balance.

I suggest caution in putting too much store in “normal” blood counts. My approach is not only do I want balance in my HU and phlebotomy, I want balance in my response to what is happening to my body and my emotional state. It’s not to say I accept it all but part of my journey is accepting I have a weird cancer that is kind of out of my control. We all have a different journey here and different responses to our individual conditions and treatment.