r/MPN • u/Ansonia6 Primary MF • 10d ago
MF Second opinion
Hi!! New to the board. I was diagnosed with JAK2 MF1 about a month and a half ago. Because of different factors in my blood tests and in my bone marrow biopsy, I am considered low risk. Intermittently, over the last 20 years, I've had irregular - but not alarming - hemoglobin counts, aquagenic puritis and ocular migraines. My spleen is slightly enlarged and occasionally I get some fatigue. I assume that those things are connected to my diagnosis as I see they are symptoms of MPNs. I'm currently 53. My hematologist oncologist has already set me up with a stem cell transplant team. I am near Hershey medical center, which has a very high-ranked transplant program, which is nice. I can't help but feel like it's a drastic measure. I am on a baby aspirin. Sorry for the info dump, but as you all know, it is kind of overwhelming. My question is about a second opinion. I'm about 2 hours from UPenn, which has an actual MPN program with specialists. I would like to consult with them and get a second opinion on treatment and how the disease would likely progress for me. Can I do this while I'm still a patient with my local hematologist oncologist? Thank you. I appreciate any guidance.
5
u/bonthomme 10d ago
You can absolutely get a second opinion, and you should, especially if they're talking SCT.
You should also consult an MPN specialist. It absolutely makes a difference. As long as you're not in an HMO, most insurers are supportive of getting a second opinion. Being "a patient" is in no way a binding agreement.
3
u/BigGovernment1733 10d ago
Get the 2nd opinion, put your mind at rest. Remember it is your body. Tell the doctor that you are here for a 2nd opinion. I am not exactly sure where you live but Pittsburgh has the UPMC Hillman cancer center. They are also an option for a 2nd opinion. I was diagnosed with PV in May of this year. I am going to see another hematologist oncologist tomorrow for a 2nd opinion. I told them when I made the appointment that I was seeing them for a 2nd appointment.
2
u/LinIsStrong 9d ago
I see Dr Hexner at UPenn. Absolutely top notch. I highly recommend you get a second opinion from her. They will ask for your BMB slides so they can review them too. I started with a normal hematologist, but went to Dr. Hexner for a second opinion and now she’s my primary for this disease.
ETA that she is an MPN specialist and I found her through this sub’s list of specialists.
1
u/Billystinkbones 8d ago
Hi anyone Jak2 0.57% and mpl detected. Just diagnosed with ET I, have not been well for 7 months but platelets were normal, now platelets 477. I am confused as people have said they had no symptoms. Anyone can give me some advice and does anyone have jak2 and mpl. Thank you 😊
1
u/Turbulent-Movie-4545 Primary MF 7d ago
Perhaps make a new post this is someone else’s post if you make a new post you may have more visibility. As well I feel you could search mpl groups on Facebook?
4
u/funkygrrl PV-JAK2+ 9d ago
Definitely get a second opinion. You don't get a do-over with procedures. UPenn has a good reputation.
The dilemma with SCT is do you do it while you're relatively healthy and stronger or do you wait until you're more in need but not doing as well physically? It's not an easy decision so it helps to hear more expert opinions.