I was diagnosed with PV in January 2021 when my doctor sent me to the ER after my blood test showed a high potassium level. This blood test did not include a CBC. When a CBC was done my HCT was 70.1. I had numerous phlebotomies the first month and placed on HYDROX (abbreviation) 500mg at first then 1000mg. I had phlebotomies first every month then placed on every 3 months. My numbers were between 48 to 51 before the phlebotomies. Recently I decided to go to a major cancer hospital in Houston, TX to get a second opinion. I went yesterday and they want me to join a study for a new medication-- rusfertide. I am apprehensive. I do not like taking medications, but this new doctor seems to frown on the usefulness of HYDROX.
I'd like to know if anyone is in this study or any other study. Evidently this study was stopped at one point due to skin cancer occurrence. I have a history of skin cancer and with the HYDROX.. I seem to have more, but my present doctor does not think that the HYDORX is causing it. This new drug they do recognize this as a side effect. The new doctor says that both drugs have that side effect, in fact he said all the drugs do. I'm confused and really don't know what to do.
Has anyone experienced this side effect with HYDROX or had any problems with the drug causing skin cancers?
Is anyone participating in this clinical trial?
Thanks so much for your input.
Hi @pfscheyer, I can’t weigh in on your question about the new drug being offered in trial. However, as your doctor mentioned, Hydroxyurea, as with all immunosuppressant drugs, can weaken the immune system. That makes us much more susceptible to skin cancers. So it’s important to avoid unnecessary or prolonged exposure to sunlight and to wear protective clothing, sunglasses, and sunscreen.
I know taking these meds can be frightening. But they are allowing us to live a ‘normal’ life which would be greatly impacted without these drugs.
I found an article for you regarding the Rusfertide. It looks from the report in AshPublications.come that this new drug has been shown to be quite effective in reducing the amount of phlebotomies and lowers hematocrit. According to the article it’s well tolerated. Might be worth trying it.
Here’s the article for you. https://ashpublications.org/blood/article/138/Supplement%201/390/478239/Rusfertide-PTG-300-Induction-Therapy-Rapidly
Your followup information could be really helpful to so many members who also have PV. Let us know what you decide, ok?
I was diagnosed with PV in January 2021 when my doctor sent me to the ER after my blood test showed a high potassium level. This blood test did not include a CBC. When a CBC was done my HCT was 70.1. I had numerous phlebotomies the first month and placed on HYDROX (abbreviation) 500mg at first then 1000mg. I had phlebotomies first every month then placed on every 3 months. My numbers were between 48 to 51 before the phlebotomies. Recently I decided to go to a major cancer hospital in Houston, TX to get a second opinion. I went yesterday and they want me to join a study for a new medication-- rusfertide. I am apprehensive. I do not like taking medications, but this new doctor seems to frown on the usefulness of HYDROX.
I'd like to know if anyone is in this study or any other study. Evidently this study was stopped at one point due to skin cancer occurrence. I have a history of skin cancer and with the HYDROX.. I seem to have more, but my present doctor does not think that the HYDORX is causing it. This new drug they do recognize this as a side effect. The new doctor says that both drugs have that side effect, in fact he said all the drugs do. I'm confused and really don't know what to do.
Has anyone experienced this side effect with HYDROX or had any problems with the drug causing skin cancers?
Is anyone participating in this clinical trial?
Thanks so much for your input.
My husband recently diagnosed too. His symptom was big toe pain. Have just done phlebotomy so far. We’re still processing what this all means. I was able to get him into an MPN specialist in March. I really like these resource websites (including this mayo site) - https://www.patientpower.info/myeloproliferative-neoplasms https://www.pvreporter.com
Strangely this is how my PV started with big toe ache
I am now in my third year roughly two phlebotomy’s a year and on hydro tabs a few aches at night but controllable and I am managing this condition so far
Hello, I have had PV with JAK2 for about 5 years. I work and live a very active life. It took about 2 months to get a good system of phlebotomies and started Hydrea to get numbers controled. I now am on Jakafi after 3 years and phlebotomies 2-4 a year. Overall short term its not bad. I suggest to cut back work and enjoy life without stress and working too hard. It has been a managable disease without too much change for me. I get tired a little if I over do it but otherwise no worries. Good luck, stay positive all of you
A friend has been diagnosed with polycythaemia vera very recently and is in a bit of a shock about it. They want to know why they're feeling dizzy when they look up?
They aren't starting treatment for a few weeks.
I want to be as helpful and knowledgeable as possible to support them. Any advice is appreciated!
My husband recently diagnosed too. His symptom was big toe pain. Have just done phlebotomy so far. We’re still processing what this all means. I was able to get him into an MPN specialist in March. I really like these resource websites (including this mayo site) - https://www.patientpower.info/myeloproliferative-neoplasms https://www.pvreporter.com
brilsmla Welcome you and your friend to PV party! We can find answers together. (Never heard of PV or Myeloproliferative neoplasms, or MPNs) until I was diagnosed with it!
I've had PV for three years and do phlebotomies generally about once a month. In discussion with my oncologist/hematologist we talked about what I might do to slow the production of blood down. One of the areas we talked about was the potential influence of one's diet. My doctor said that I should maintain my overall health to the best of my abilities and we also talked about the possibility of a reduced iron intake, since that is one of the fundamental building blocks of blood. I needed to drop some weight so I started a diet that put me into nutritional ketosis. That worked wonders for shedding pounds but one thing that I noticed was that the duration between my phlebotomies increased -- I was getting a phlebotomy once every three months instead of once per month while I was in nutritional ketosis. There hasn't been any studies on this to my knowledge, but it was a connection that I made based on my own personal experience. Your mileage may very. I would encourage you to talk to your doctor and explore what options are available to you. I didn't feel very well when my hematocrit got too high -- my doctor has set the threshold at 45% for me (greater than 45% = time to get a phlebotomy). Maintaining at 45% has kept me feeling pretty good and I'm still able to be very active (I work as a soccer referee).
A friend has been diagnosed with polycythaemia vera very recently and is in a bit of a shock about it. They want to know why they're feeling dizzy when they look up?
They aren't starting treatment for a few weeks.
I want to be as helpful and knowledgeable as possible to support them. Any advice is appreciated!
A friend has been diagnosed with polycythaemia vera very recently and is in a bit of a shock about it. They want to know why they're feeling dizzy when they look up?
They aren't starting treatment for a few weeks.
I want to be as helpful and knowledgeable as possible to support them. Any advice is appreciated!
Hello Jules, I was diagnosed with PV this past September. I am a high school science teacher and was also concerned about having to cut back on working. Since phlebotomies once a week for 10 weeks and taking Hydrea, my blood work is within normal standards and my energy levels are up. I have only one more year til retirement so I plan to hang in there. That being said, I do have a lot of sick days saved, so I will also take advantage of them when needed and treated myself. Be strong!
I have 3 yrs before I can take an early retirement. My work (Mortgage Broker) is extremely stressful and I’ve had 34 years of this. The hours can be excessive. I may need to find a more average 9-5 type of job that also provides PTO. I’ve honestly only taken one short vacation and not have to also work while away and it was amazing to actually be able to enjoy and rest.
Connect
Connect
Like
Helpful
Hug
Hi @pfscheyer, I can’t weigh in on your question about the new drug being offered in trial. However, as your doctor mentioned, Hydroxyurea, as with all immunosuppressant drugs, can weaken the immune system. That makes us much more susceptible to skin cancers. So it’s important to avoid unnecessary or prolonged exposure to sunlight and to wear protective clothing, sunglasses, and sunscreen.
I know taking these meds can be frightening. But they are allowing us to live a ‘normal’ life which would be greatly impacted without these drugs.
I found an article for you regarding the Rusfertide. It looks from the report in AshPublications.come that this new drug has been shown to be quite effective in reducing the amount of phlebotomies and lowers hematocrit. According to the article it’s well tolerated. Might be worth trying it.
Here’s the article for you.
https://ashpublications.org/blood/article/138/Supplement%201/390/478239/Rusfertide-PTG-300-Induction-Therapy-Rapidly
Your followup information could be really helpful to so many members who also have PV. Let us know what you decide, ok?
-
Like -
Helpful -
Hug
4 ReactionsI was diagnosed with PV in January 2021 when my doctor sent me to the ER after my blood test showed a high potassium level. This blood test did not include a CBC. When a CBC was done my HCT was 70.1. I had numerous phlebotomies the first month and placed on HYDROX (abbreviation) 500mg at first then 1000mg. I had phlebotomies first every month then placed on every 3 months. My numbers were between 48 to 51 before the phlebotomies. Recently I decided to go to a major cancer hospital in Houston, TX to get a second opinion. I went yesterday and they want me to join a study for a new medication-- rusfertide. I am apprehensive. I do not like taking medications, but this new doctor seems to frown on the usefulness of HYDROX.
I'd like to know if anyone is in this study or any other study. Evidently this study was stopped at one point due to skin cancer occurrence. I have a history of skin cancer and with the HYDROX.. I seem to have more, but my present doctor does not think that the HYDORX is causing it. This new drug they do recognize this as a side effect. The new doctor says that both drugs have that side effect, in fact he said all the drugs do. I'm confused and really don't know what to do.
Has anyone experienced this side effect with HYDROX or had any problems with the drug causing skin cancers?
Is anyone participating in this clinical trial?
Thanks so much for your input.
Strangely this is how my PV started with big toe ache
I am now in my third year roughly two phlebotomy’s a year and on hydro tabs a few aches at night but controllable and I am managing this condition so far
-
Like -
Helpful -
Hug
1 ReactionHello, I have had PV with JAK2 for about 5 years. I work and live a very active life. It took about 2 months to get a good system of phlebotomies and started Hydrea to get numbers controled. I now am on Jakafi after 3 years and phlebotomies 2-4 a year. Overall short term its not bad. I suggest to cut back work and enjoy life without stress and working too hard. It has been a managable disease without too much change for me. I get tired a little if I over do it but otherwise no worries. Good luck, stay positive all of you
-
Like -
Helpful -
Hug
3 ReactionsMy husband recently diagnosed too. His symptom was big toe pain. Have just done phlebotomy so far. We’re still processing what this all means. I was able to get him into an MPN specialist in March. I really like these resource websites (including this mayo site) -
https://www.patientpower.info/myeloproliferative-neoplasms
https://www.pvreporter.com
-
Like -
Helpful -
Hug
1 Reactionbrilsmla Welcome you and your friend to PV party! We can find answers together. (Never heard of PV or Myeloproliferative neoplasms, or MPNs) until I was diagnosed with it!
-
Like -
Helpful -
Hug
2 ReactionsDo people generally feel their symptoms improve/feel better after a phlebotomy?
-
Like -
Helpful -
Hug
2 ReactionsWelcome, @brilsmla. I moved your message to this existing discussion:
- Polycythemia Vera: Just been diagnosed: https://connect.mayoclinic.org/discussion/polycythemia-vera-1/
I did this so you can read the helpful messages posted and connect easily with members like @julesc @dhcarter @lorrainegobeil @vanna1031 @albertedward and many others, who can help answer your questions.
Some people with PV might develop vague symptoms such as headache, dizziness, fatigue and blurred vision.
To help your friend, you may appreciate the sections at the end of this article from Mayo Clinic about PV: https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/diagnosis-treatment/drc-20355855
It include sections like:
- Lifestyle and home remedies
- Preparing for medical appointments
-
Like -
Helpful -
Hug
6 ReactionsHi,
A friend has been diagnosed with polycythaemia vera very recently and is in a bit of a shock about it. They want to know why they're feeling dizzy when they look up?
They aren't starting treatment for a few weeks.
I want to be as helpful and knowledgeable as possible to support them. Any advice is appreciated!
-
Like -
Helpful -
Hug
3 ReactionsI have 3 yrs before I can take an early retirement. My work (Mortgage Broker) is extremely stressful and I’ve had 34 years of this. The hours can be excessive. I may need to find a more average 9-5 type of job that also provides PTO. I’ve honestly only taken one short vacation and not have to also work while away and it was amazing to actually be able to enjoy and rest.
-
Like -
Helpful -
Hug
3 Reactions