I have PV, after my disease progressed to bone marrow fibrosis stage 1, I agreed to participate in a research study for a drug. And today I got the results of my BMB, which says that I am in remission!
It's not a complete remission, but any kind is good, right? Complete remission would be without medication. I have to take the medicine as long as it works for me. I will get it for free from the manufacturer.
I am very happy, I feel much better, and my blood tests are completely normal. And my spleen has shrunk by more than 30%. I still have fibrosis stage 1, but I hope this will get better in time too. No blasts in the bone marrow, before I had 5%.
That's why I recommend everyone, if you have the opportunity to participate in the research, definitely try, you have nothing to lose, if you don't feel well, you can just give up participating in the study without explanation, but it can also be much, much better for you like it was for me.
I consider myself one of the few lucky people in Croatia who got that opportunity. One day when the drug passes the research, and when it will be approved, it may pass years and years before my country puts it on the list of available drugs. That's why I consider myself the lucky one to whom the manufacturer pays for the drug, while the rest of my fellow citizens will probably only have access to it in about 10 years as things stand here.
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cvita71
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That is great news and reflects my own experience. I have Primary MF and am enrolled onto the FEDORA clinical trial. most of my symptoms have now disappeared. I am due to see my MPN specialist next week so will post a more detailed update after that. Can you tell us which trial and drugs you have been on?
Hi Flayingsteamer, so glad your symptoms disappeared. I'm on Navitoclax study. There are various parts of the study. I'm on Navotoclax on its own, without RUX. Wasn't easy at the beginning, because of the starting dose, until they found the dose that suits me, now after everything, I'm so glad I join in. I feel like I have no PV at all.
Just reading about Fedora clinical trial. Hope you tolerate it well and that you'll feel better with the combination. Dr Verstovsek said that the combination of the drugs is the future for MPN-s. Just to find the right combination😀
Thanks cvita38, on holiday in Rhodes for a week then first day back I have clinic face to face meeting. Also been referred to transplant specialist and have first meeting on same day. I'll post update after the meetings. I am still transfusion dependent having 2 or 3 units every 2 weeks.
That is great news! Also great to hear about the potential for more effective treatments for MPNs. you are right bout participating in research. it is the only way we will ever move forward.
Thanks hunter, yes it seems like the only way. We still can not get Besermi here, it was approved in the EU in 2019. and in use a lot. I can imagine when my drug is going to be available here. It wasn't easy in the study, from the beginning, but now I'm so glad I'm in it, I'll do it again if there will be a need for it.
Great to hear it Cvita38! Did your BMB show that your Bone marrow now no longer has fibrosis grade 1? You mentioned that you are partial remission, so you still take Navitoclax for your PV or you no longer have to take it? Anyhow, congrats on beautiful results you have through participating in the trial!
I have to take the medicine and as long as it works for me. I will get it for free from the manufacturer.
Unfortunately, my fibrosis is still present, the doctor says that the scar tissue needs time to heal. I hope that this will also disappear with time, since all the other findings are much better. Also the cellularity of the bone marrow has decreased and I have no blasts which is an excellent result compared to the findings before the start of the study.
Thank you for reporting the results. No blasts now is great, that just means the bone marrow is functioning rightly at the present despite the fibrosis. I can only imagine that being bone marrow, it will take a long time to heal, but given that it is functioning properly now, healing process should already started. And your Lymphocytes in the BM also returned to normal level right? Did you have macrocytic and/or microcytic before starting the drug and now it got resolved? I have just read about the use of Naviclorax on top of Ruxolitinib for those who got resistance or intolerances of Rux and results look great. Really hope this one enters Clinical trial stage and gets approval soon in coming 5 years or so
The numbers look like this, maybe you understand more than I do:
Bone marrow cytology: pmyc 4%, myc 13%, mmyc 13%, nseg 8%, seg 35%, ly 5%, mono 1%, eo 2%, ebl 19%, DFKS: seg 38%, ly 20%, mono 11% , E: hypochromic monicites, TRC regular. Normocellular smears of bone marrow aspirates during bone biopsy. Ratio: B:C lines is 4.3: 1. Granulopoiesis is morphologically orderly, represented by transitional and mature forms. Erythropoiesis is normoblastic, it matures properly. Megakaryocytes are within normal limits.
Opinion: The findings are stable, and the drug is continued at the same dose.
The results are great! Took me a while to look up some numbers but its so great the drug almost “cure” you there. Now just need the bone marrow to heal on its own and that will put an end to the disease, maybe 99%. Please update us all when your BM heals the fibrosis!
would you please explain what a “blast” is? My husband has PV and every so often he gets an all over body type pain where he doesn’t know what or where to hold to ease the feeling, usually the chest area. Is this a blast?
A blast is an abnormal immature white blood cell. These are found as myelofibrosis progresses and the bone marrow becomes more dysfunctional. The patient is considered to be in "blast phase" when blasts are > 20%.
The type of pain you are describing could be related to the PV or possibly to the medication being used to treat the PV. Suggest that your husband review the pain type-extent-duration with his MPN care team. Pain is a warning that something is wrong and the warning should be heeded.
That is so great!!! I go to MD Anderson tomorrow and so sad I am not seeing Dr V, but glad he is still out there fighting for us! You made me think of him because I thought he is from Croatia, right? I love to hear of new drugs! And I would trust anything he does! I am on Besremi, but as they come out with new things they maybe better. So happy for you and keep us posted.
He is. He took a job as CMO at a company called Kartos. It is for a new drug for MF. I was so happy to see he was still working for us. I was suspicious when he told me he was retiring. 😀
I remember when I was diagnosed with an MPN (ET) a decade ago, my doctor told me that by the time I needed to be on medications, there would be better ones than existed at the time. Love to see that this is coming true!
I met in the hospital a lady, who is ET on plane interferon for 25 years, she says she lives a normal life without any difficulty, just taking interferon. There are options for you. I wish you to stay that way without medications🤞🙂
cvita38 this is so encouraging. You are so brave to join in a study (I am involved in one for a different (pre) cancer). Thank you for sharing the great news along with all the details. Looking forward to hearing more from you along your journey.
Thanks for sharing Cvita and I am very heartened to hear your story and thank you for your courageous approach to enrolling on this trial to help others - wishing you all the best for your continued improvement and hopefully one day a full recovery and remission, stay well!
I am also not without side effects. I still have some night sweats and itchy skin, but much less than before.
Partial remission means that the cancer has responded positively to treatment and has shrunk. Although this may mean that the person has milder symptoms of the disease, it still has not completely disappeared.
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