Patient Advocate Shares Why The Future Is Bright For PV

Baker, a patient and patient advocate based in the United Kingdom, received a diagnosis of essential thrombocythemia (ET) in 1991, followed by polycythemia vera (PV) in 2004. Both conditions fall under the umbrella of myeloproliferative neoplasms, or MPNs.

Essential thrombocythemia is characterized by an increased number of platelets in the blood, whereas polycythemia vera is primarily characterized by an elevation of the red blood cells, according to the MPN Research Foundation.

Baker spoke with CURE about her initial diagnosis, her current treatment realities with regular venesections, or blood draws, and her hopes for the future of MPN treatment.

CURE: How did your blood cancer journey begin?

Baker: In the most peculiar way. I had incredibly painful feet and I was very tired the whole time. My doctor referred me to an orthopedic surgeon who then referred me to a rheumatologist who then took a look at my blood counts and said that I had an alcohol problem when I didn't drink, and that really worried me. My husband was with me, and he said to the doctor, “I'm afraid you've got this wrong. She doesn't drink.” He then said to me, “Well, maybe the machines have got it wrong.”

Anyway, he took some more tests, and I was then referred to a hematologist. But it was quite a bumpy journey to get to there, and also it was really difficult. It's 1991, not a lot of people knew much about these very rare blood disorders, as they were called then. And I think it was a very scary time, certainly for me, because I certainly didn't trust anything, having been told there was something wrong with me that I categorically didn't have, but I soon built a very good bond with the hematologist, who gave me a lot of time and understanding. And the best thing that happened for me was it explained why I was always feeling so tired.

What was your treatment experience like?

The treatment, to begin with, because I had such a very high platelet count, and I was originally diagnosed with ET, and then subsequently PV, the treatment actually was, I think, quite scary, because the thing that scared me most was that I looked at the instructions and it said it was a chemotherapy drug, and I went marching into my general practitioner and I said, “What is going on here? I'm being treated for cancer, and nobody has told me I've got cancer.”

And he was the most amazing person, because he said to me, “Do you know what cancer means?” And I said something fairly horrific, as far as I'm concerned. And he said, “It's a proliferation of cells, and this is a proliferation of cells in your in your bone marrow.” But that initial scary bit, I don't think really helped me settle into the treatment.

And I'd had problems with ulcers on my feet because the blood was so thick, and I was permanently going up and down to the hospital having those seen to. It was difficult. The side effects were quite difficult too. Because, I was quite young, but there are always side effects to drugs, and they affect different people in different ways.

And what is your what is your hope for the future of PV treatment?

For me, and I'm going to have to say this, not to have to go to hospital so regularly. my experience of having PV now is the venesections, and that means for me, I have to travel to the hospital. This isn't the hospital's fault. It's just the process. You have your bloods taken, you wait for the bloods to come back. You then have to go upstairs, and you have to wait in the day unit. You then have the venesection, and then you come home, and fatigue is the biggest problem I still find with PV, and nobody can understand fatigue. It is not just tiredness, it is like walking up the stairs in thick treacle. It's really, really difficult.

And I think my hope, my real hope, is there's a drug that will stop the need for these venesections and also make it easier to live with PV.

One of the other side effects that's been problematical is my skin, and I simply cannot go out in the sun because I started with actinitic keratosis, and it's progressed to having basal cell carcinomas. And so, I think my hope is that there will be something new that will circumnavigate the need for venesections and a better quality of life.

And I do say this, I think for all patients with PV the future has never been brighter. You know, I was diagnosed in 1991 which is a long time ago, and the drugs that were prescribed in 1991 you would not give a young person these days. So I am hopeful that very soon, there will be something really exciting that will change the lives for people like myself with PV

Transcript has been edited for clarity and conciseness.

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