Myleofibrosis diagnosis

[Kashworth]

Thank you to Mark for the link and invite. My husband, Fred, and I just found out in July that he has MF, which we never even heard of. Lots of fear and questions. He has a good team in Houston, Texas at MD Anderson. We are going for the SCT and meet with the team in one week. Today he is getting a blood transfusion because his hemoglobin dropped to 7.9. Lots ahead to conquer and we will take it one day at a time. He’s the strongest person I have ever met and he has the best attitude and heart.

[cmc_ufl]

This is a great forum where you will find lots of helpful information. The people here are kind and excellent.

Do you know if he has primary myelofibrosis (MF that occurs on its own) or secondary myelofibrosis (MF that occurs after having another myeloproliferative neoplasm such as essential thrombocythemia or polycythemia vera)? Looking back at his records, does he have any history of elevated platelets or RBCs in his bloodwork over the years?

[hunter5582]

Hello and welcome to the forum. Glad that you fund your way here. Also glad to hear that your husband found his way so quickly to a high quality MPN care team. That makes all the difference.

The SCT is a tough road but is the one option that has the true potential to be curative. One of my colleagues had one two years ago. He is doing quite well and bikes many miles every day.

It sounds like your husband has a good attitude. He is also blessed to have you there for support, Know that there is more support here on this forum, All the best to both of you going forward.

[MFBMT2011]

Welcome. Yes, SCT is tough but manageable. Had mine in the uk ten years ago when I was 58. I am one of several here who have been down that route and there are many worldwide. Happy to help in any way, talk, answer questions and share story. You can find several such stories in the online MPNForum magazine. Your doctors are the experts but we can help translate and understand the process from a patients perspective. My hgb was 8.1 when I was diagnosed and stayed in the 8s until SCT, several months later.

SCT is not for everybody and the medical teams will assess general health to ensure it is appropriate to take it on.

Be positive

Best wishes

Chris from Watford.

[Wyebird]

Horrid news and time for you all. Sending hugs

[Mazcd Partner MPNVoice]

hello Kashworth and welcome to our forum. It is a very daunting time for you both, and we all completely understand your fear, we are all here to support you both and our lovely members are more than happy to answer your questions. Best wishes, Maz

[Cja1956]

Sorry to hear about your husband’s diagnosis. I have post Et Mf, and I’m really glad that he is getting treated at MD Anderson. I know an SCT is a scary proposition, but the hospital has a great track record and between the two of you, he will get through this. Keep us posted.

[Meatloaf9]

You are being treated at one of the premier centers in the US. You will have a good team and with a positive attitude you should do fine. Please keep us all posted as many on this forum will eventually face the same treatment. May I ask who was your original hematologist at MD Anderson? Best of everything to you at this anxious time. Keep the faith.

[Kashworth in reply to Meatloaf9]

His hematologist is Dr. Pemmaraju. His stem cell transplant doctor is Dr. Popat. So sorry for the late reply but I just found my way back here through my emails. He is set to get transplant first month of 2022. We are excited, anxious, and hopeful . Kathleen

[Meatloaf9 in reply to Kashworth]

Hi Kathleen, I have heard great things about Dr Pemmaraju and I have watched several of his presentations on various sites. I don't think you could have a better hematologist. Keep up the faith and everything will work out. Will probably be a difficult several months from what I have heard, I am currently PV. Maybe you could partner up with someone on this forum who has gone thru the SCT and they could help you. SCT can be curative for MF and we all are wishing you the best and praying for a cure for your husband.

[Cja1956 in reply to Kashworth]

Hi, Kathleen, I just want to wish your husband the very best results on his upcoming SCT. I know it’s a scary proposition, but it’ll be worth it in the end. Please keep us updated on his progress. We are all rooting for him. Cindy

[katiewalsh]

Dear Kashworth. Welcome to our group. Folks on here can help in many ways. Including if you’re feeling depressed & need to be cheered up or you want to share wonderful news. Congratulations on being at MDAnderson! I hope you remember that being there your husband is in the best hands possible and you shouldn’t worry if things are being done the right way. They will be. Katie