Interferon or Hydrea
Posted , 10 users are following.
Hello pv community,
Just back from my Dr appointement and he thinks that I should start medication very soon. Mainly because of my high platelets count. I'm from Canada and I don't know what the number means exactly but it's at 1100.
At first, he wanted to put me on Hydrea right away, but, after I asked him about other options, he talked to me about Interferon and seamed to think it to be a good option for me. I see him again in 2 week to give him time to read about it.
I would like to hear from people who tried Interferon and/or Hydrea and could tell me about side effects and results.
Thank you
Marie-Jos
0 likes, 24 replies
lijuan7002 marie-jos6518
Posted
Hello Marie-Jos'
There is a concern about the “time-bomb effects” of Hydroxyurea.
HU can suppress the symptoms of PV – but also, it may lead to adverse health effects and it tend to accumulate in the body over a period of time, when the body cannot rid itself of a toxic substance which continually irritates the tissue where it has settled, a tumor or cancerous growth possible develop.
I think HU may not a good choice for PV.....
marie-jos6518 lijuan7002
Posted
Hello,
I did start HU because my insurance wouldn't cover Jakafi. For now, I have some reaction (eczema like lesions I never had before). Not crazy about taking it but it's better then nothing. I see my dr in a month or so, I'll see if my results are ok and we'll talk about other options if necessary.
Zapamania marie-jos6518
Posted
Hi Marie the criteria for insurance paying for Jakafi is you first have to try HU, and if you can't take it for whatever reason, then they will consider Jakafi. Jakafi is made by Incyte and they have a compassion program if you qualify also. Hope your body adjusts, some people have no problems, others do. Hopefully your numbers will be better. Zap
peter98873 lijuan7002
Posted
I can sympathise with your views on Hydroxy as I was taking this for well over ten years. At first it seemed OK but as I needed larger doses I suffered some bad side-effects. Eventually I stopped taking this drug as the symptoms were proving untenable. I was immediately given Ruxolitinib (Jakavi in UK) and all I can say is that most of the severe symptoms I had wih Hydroxy have subsided and I feel so much better on the Ruxolitinib. I will noit consider Hydroxy again.
Peter.
lijuan7002 marie-jos6518
Posted
Hello Marie-Jos'
There are no FDA-approved first-line drug treatments for PV at present.
However Jakafi as a second-line treatment option for patients with PV.
But do not worry : a new generation drug as first-line treatment for PV is coming soon!
You can visit the ASH and EHA website to get the latest clinical Information about PV.
Here are some of the latest good news for PV as follows,
(1) MPNforum Magazine Summer, 2017
Silver – When to treat with Interferon…molecular study yields compelling data.
It was a small trial, 16 women and 14 men, but it will have a big impact. The result of the study,“The Effect of Initial Molecular Profile on Response to Recombinant Interferon-a Treatment in Early Myelofibrosis will be published in the upcoming American Cancer Society’s journal, Cancer. Lead author is interferon pioneer Dr. Richard T. Silver with an international crew of co-investigators. (Dr. Hans Hasselbalch appended a detailed analysis of the report in the issue, Dr. Nick Cross is one of the co-authors.)
(2) Ropeginterferon alfa-2b in Polycythemia Vera from 3 abstracts presented at the 22nd Congress of the European Hematology Association (EHA) in Madrid.
Abstract EHA-3556: To alleviate the known burden of frequent health care office visits for product administration, home self-administration and patient individual dosing of Ropeginterferon alfa-2b were performed in the PEN-PV study (NCT: 2014-001356-31). The pen allows for individual dosing and patient-convenient self-administration at home. It is expected to support adherence to Ropeginterferon alfa-2b in the long-term treatment of PV-patients.
Abstract EHA-1564: To assess the disease modifying capability of Ropeginterferon alfa-2b compared to hydroxyurea (HU), the effect of treatment on hematopoietic bone marrow progenitor cells was investigated in 10 patients of the French PROUD-PV study population (NCT01949805). Although at 12 months, both drugs led to a decrease of the mutant JAK2V617F allelic burden in peripheral blood, only Ropeginterferon alfa-2b induced a meaningful decrease of mutated
hematopoietic bone marrow progenitor cells (median decrease 64% compared to only 25% under HU).
Abstract EHA-3520: An update from the PEGINVERA study (NCT: 2010-018768-18) on long-term maintenance treatment of up to 6 years (median of 4 years) with Ropeginterferon alfa-2b was provided. Patients were successfully switched from the once every 2 weeks to the more convenient once every 4 weeks' long-term maintenance dosing schedule after a median of approximately 2 years. All 29 patients could be maintained on this schedule for another 2 years, representing 100% treatment adherence. The high rates of hematological (over 80% of the patients achieved partial or complete hematologic response) and molecular responses (up to 80% of the patients achieved partial or complete molecular response) were maintained after the switch to the 4 weeks' schedule and remain stable (trial still ongoing).
After 4 years on Ropeginterferon alfa-2b, the majority of patients showed a sustained reduction of the mutant JAK2V617F allelic burden to below 10%, demonstrating the disease modifying capability of Ropeginterferon alfa-2b treatment.
In a word, you should think about using the new generation PEG-Interferon-alpha-2b to control your high platelet count.
It is possible that there will be a first-line EHA-approved drug treatment for PV next year!
I think the new generation interferon may a good choice for a permanent cure !!
Best wishes and be well
lijuan7002
Posted
Sorry for the wrong word "EHA" ? "first-line EMA-approved PV drug"
Best wishes and be well
gill_67197 marie-jos6518
Posted
Hi Marie_jos
I was diagnosed with PV about 4 years ago and apart from being put on baby aspirin, I have had nothing else to help me. One of the many consultants I have seen took me off iron and interferon A was discussed briefly but he sent me away to think about the side effects and when I next saw someone else it wasn't mentioned.
I'm so annoyed that this cancer ? is going through my blood stream and nobody is doing a thing about it. My hitocrit level was .4 7 months ago, I have and I have to submit a Jac/2 blood test every 12 weeks. That's it!!
I'm so itchy my skin is full of scars etc, so and I have been hospitalised with sepsis and again and with acute pancreatis,no stones were found in my gallbladder so maybe it was a part of the cancer instead of the pancreas?? I just don't know!
I'm feeling a bit like an unimportant waste of time atm I also have MS, cauda EQUINA and COPD so maybe I'm too far gone to be treated?
marie-jos6518 gill_67197
Posted
Do you see a specialist or a general Dr? It could be time to get a second opinion. The itchy skin was gone for me after they got my blood numbers down. Do you have venesections? That’s usually the first treatment. I now take Jakavi and I feel better than ever. I really like my specialist who accepts to listen to me talk to him about what I read here. Having a doctor you trust is important, we’re stuck with pv for the rest of our lives, we should at least make it confortable.
peter98873 gill_67197
Posted
Hi Gill,
I can understand your concerns but having read your message it could be that the Polycythemia you mention could be a basic form that is being caused by one of your other illnesses. This is not unusual or unknown. If the illness causing the Polycythemia is treatable it is very possible that the Polycythemia will recede with the treatment. The symptoms you describe can be associated with PV which are fairly common and can be unsettling. COPD is caused by a lack of oxygen in the blood that affects the lungs. PV is caused by an oversupply of red blood cells by the bone marrow and will also affect the oxygen supply to different organs. I know something about pancreatitis and gall bladder problems as my wife suffered intently from these. These are due to levels of acidity in the body and were not due to an oxygen deficiency. That you are receiving regular tests for JAK2 suggest your PV has not progressed to PRV (secondary Polycythaemia). The only sepsis I can relate to is Neutropenic Sepsis, an after effect of chemotherapy treatment which you have not received in respect of PV. There remains some doubt as to whether PV, particularly in its early stages, can be regarded as a cancer. I would suggest that you make an appointment with your Haematologist and discuss the situation with him/her. As has been suggested already, don't be afraid to ask for a second opinion. Most doctors would not dissent to this. You certainly have not gone beyond any treatment but it may be your doctors haven't come to a definite solution to your problems, bearing in mind what you have already been through. I wish you the best of luck.
Peter.