I'm not whining and idk how others feel but getting this diagnosis was like...o cancer sucks but then again at least this version is not terminal...so I'm blessed. But I think part of the struggle is that when others look at you 'you look ok you don't look sick' which I appreciate but what you can't see is how exhausted I am. All the time. I'm currently on hydroxyurea started at 500 MG a day which I tolerated well but wasn't bringing my platelets down (when I got referred from passing out and having to go to the ER my platelets were 1.5 million) they jumped me to 1000 a day and platelets did start coming down...last visit they were still in the 500 range but moving in the right direction. I am not tolerating that dose so well though as I started having facial and feet muscle tremors, losing my eyelashes and a bit nauseous. I have my next appointment today so fingers crossed I can drop back down on the dose. Again not whining...but I super appreciate this forum maybe to just get some things out and get to hear others experience!
Not whining!: I'm not whining and idk how others... - MPN Voice
Not whining!
That sounds like very reasonable concerns rather than whining. It is not at all uncommon for others to not understand the implications of managing a chronic cancer like ET or PV. It is often the constitutional symptoms like fatigue that are the most bothersome.
With PLT at 1.5 million, most would recommend cytoreductive treatment. With PLT that high there would be a significant increase in hemorrhage risk, possibly Acquired von Willebrand Disease. The operative question is what your treatment target should be. There is no particular value to having PLT levels be "normal", particularly when you are starting from such a high level. Some MPN Specialists use 600 when a hard number is used. silvermpncenter.weill.corne... There is an emerging school of thought that it is actually the delta (degree of change) that matters most.
The key is to decide what your treatment goal should be. Should the goal be a number on a lab? If so, what evidence is there in the literature to support a specific number? Would you prefer for the goal to be to reduce risk of thrombosis/hemorrhage? If so, what should the target be? What role does quality of life play in setting your treatment goals?
Your risk tolerance and actual adverse effects experienced also play an important tole in determining treatment strategy. What risks and adverse effects are you willing to accept in order to achieve your treatment goals? You are already experiencing what sounds like potential HU adverse effects in facial and feet muscle tremors, losing my eyelashes and a bit nauseous. The tremors are particularly concerning. this is an issue that needs to be addressed promptly with your MPN care team.
You are on the young side to have initiated HU for cytoreduction. Many would prefer Pegasys for younger ET patients due to the long-term risks associated with HU. Note that HU is faster acting than PEG, however. Note also that we all respond differently to each of the MPN treatment options, each of which has its own list of cautions/contraindications.
It will be up to you whether you can drop the dose back down. This is a decision to make with your MPN care team in light of meeting your treatment goals, dealing with the risks/adverse effects, and ensuring your quality of life. You also have the option to discuss switching to another medication if that is your preference. There are a number of other options.
Wishing you all the best as you move forward.
Think I would be concerned too! Please shout about your side effects at your appointment!It doesn't have to be like your going through ask for a change of medication or a dripping your dose down.
Are you seeing a specialist? If not find one.
I can see that "my superhero" Hunter has posted so I'm sure he's sent you relevant links.
Don't just out up with it, I did that then had an allergic reaction
Oh no! I'm at the doctor now. I do have a hematologist/oncologist so I'm very fortunate to have a great team. We discussed, labs say platelets are still high but not super high. Goal is 500 range, and other counts look good. Continue Hydrea 500mg daily during the week. 1000 on the weekend, come back in a month. Thank you!!!
This is the dosage that worked for me, though I take the 1000 mg dose Mondays and Fridays. Were they specific to taking it back to back and did they give a reason to do so? My hematologist was fine with the split.
No they weren't specific, just Dr recommended 3 days a week and I asked for the weekend days to try to balance work and life. She also said I could split the 1000 apart in 500 and 500 on those days to see if that helps. She has said there are other treatment options but that she hoped we could manage it with the HU in low dose because other options could have greater side effects. Really she said I could do the 3 days whenever I want sp thanks for your feedback! Maybe splitting them apart like that would keep it from making a bigger impact?
I assumed so, that is why I split them. Since my main issue with HU was fatigue I also felt better taking them at night instead of in the morning. Again my Hemat. had no issue with when during the day HU was taken.
Do hope you start to feel better. Good you have a support team. I take 500 dose every other day . Platelets just under 600 .I m happy with that .
Even if you were whining (which you're not ), you have every right to do so! There are some other treatments for ET, as others have noted, and maybe you can talk to your hemotologist about other options.
not whining at all! I’m sure we have all shared like thoughts as we come to terms with how we live with our “cancer” (in my case PV), and oftentimes I feel people are thinking I’m putting it on or try to get out from doing something. Little do they know.
This forum is great to vent and if it helps do so. Many sympathetic ears are here as is great advise and good insights.
Good luck moving on. There are many good days.
Find an MPN & discuss your treatment. I personally would have not put up with the side effects on HU that you have. I only tolerated 8 weeks on it . My body reacted badly . Moved to Peg Interferon. I can confirm that all the aching sickness & tiredness went as soon as the HU was out of my system.
I was annoyed that at the time I was prescribed the Hydroxy I was given no option of any other medication . I felt horrendous . Fortunately I found this website which was a game changer.
I spoke to MPN & was changed to Interferon. After 2 years nearly on it I can say it changed my quality of life to normal . I still fear the Hospital & local Drs are obsessed with platelets numbers. Mine were 590 at start but because over 60 even though no symptoms they were obsessed with these platelet numbers. Interferon is a slow treatment but changed my quality of life . I had no symptoms before treatment & ET Jak 2 only discovered after a torn shoulder injury .
Good luck & making your own decisions with this disease & treatment is important don’t just accept what you are told which I almost did 👌
Julia .
A lady on here said she was told there are two cancers. 1 (C) big and 1 (c). Mine is (c) my brother is (C). I felt at the time mine was so what.. people make you feel like it nothing, I have JAK2 but the PV mf or what ever has not been seen yet. Hope you're appointment today goes your way. Good luck.
I know you’re not whining ‘ cause I’m not either. But it was a punch to the gut to find out my high blood count numbers meant a form of cancer! And I’m also grateful to not have a terminal diagnosis but it is a shock. I totally understand. My experience with hydroxyurea was similar. I was started on 1000 mg daily and had horrible itching, joint pain and exhaustion. Now that my numbers have come down a bit I’m on 500 mg daily but still have intermittent itching and am always tired. I won’t see my doc till next month so we’ll see if the 500 dose will be adequate.
FCancer123 Hi,
Wanted to join the chat to say, you're definitely not whining. So glad you've shared your experiences here. The people on the forum always reach out with the best advice and care.
Sorry you've had such a negative experience and horrid side effects. I hope once you share your experience, at your next appointment, you'll get more support and adjustments can be made, or alternative treatment offered.
hunter5582 has given great advice, he really does look after us all.
Please keep us update. Hoping all goes well for you.
I took years to come to terms. I’d try to fight it and collapse with fatigue. I’d drink lots of water as everyone advised so peed all night.
Platelets up meds up platelets up meds up introduce anagrelide , drop anagrelide dose platelets up meds up for most of the 6 yrs.
Then PEG two yrs in my dose is still tweaked for the better. My body loves it. No longer anaemic. Last week for the first time since diagnosed all my bloods were in the normal range.
Boy, it is so so true what you state about looking okay with PV but having moments of complete mental exhaustion which can hit at any time! My own mom has made degrading remarks about me to others when I tell her I can't shop anymore and need to go home because I'm tired. I've told her countless times the name of my blood condition (she has asked me over 50 times) and have told her countless times that my only huge symptom is extreme tiredness. To this day my mother, family and friends don't get it!! They look at me really weird when I say I've had enough and need 30 minutes to just to chill. Sure I look normal, workout 2 hours a day and take care of myself but these tired spells can be debilitating. I appreciate hearing from others with PV & ET because it validates how I and others go through on a daily basis. Thank you so much for posting! Kerry
Hi you are not whining, this forum is excellent! Hunter a star! My haemo nurse wanted to get my platelets between 150 to 450 no way I thought it was reducing my haemoglobin count, white blood cel count and haemophils and got personal appt with the boss lady she agreed between 500 to 600 fine, I exercise play tennis, eat good diet drink alcohol and ET Jak2 found from routine blood test, nothing else. Everyone is different I tolerate hydroxy but hate taking it v every day, but a we are alive. Good luck!
Hi FCa123,
Your take on having a survivable cancer is extremely on point- in fact I cringe when SWMBO tells others that I have cancer- I have had 2 episodes of 'actual' cancer already, so this MPN-type cancer doesn't feel as big a deal to me, I guess, but it still was/is /can be scary to hear and know that you're living with it.
Your side-effect symptoms sound like it may be time to think about moving to another treatment type.
One big question is where are you located [generally] because therapies that are approved and available in one country/region, may not be in others and may vary by your final diagnosis- ET vs PV vs MF...
Interferons appear to be the current "magic bullet" therapy of the day, so starting one might be a good idea- especially since you're young, and they may offer a way to prevent disease progression in the coming decades.
If you aren't seeing a provider who is specifically an MPN specialist, you should be.
This where a lot of us found our Heme/Onc MPN MD's:
pvreporter.com/mpn-speciali...
Best,
PA
Thank you so much! I live in the US in the Southwestern part of VA. I am fortunate to have a cancer care center within 30 minutes and a hemotologist/oncologist. Although my diagnosis is ET she left open PV to give some treatment wiggle room down the road as she said that there are more available options for treatment of PV. Platelet goal is 500...almost there!
Hi F-Ca123,
Glad to hear that, because it sure sounds like you caught a good one!
I'm almost 65 this year, and was 62 at my PV Dx, so they were hesitant to give me Besremi because of the age-related risk of side-effects, but my reasoning was if it's safe enough to give to pregnant women, I'm pretty sure it'll be OK for me too.
Having been on it for the better part of 2 years now, I'm really glad I pushed for it.
Best,
PA
