Hi @raremiracle2 Welcome to Mayo Connect! This is a wonderfully supportive forum. It helps when you find others who are going along the same medical journey so you’re not feeling quite so alone.
There are a number of discussions with members who have Chronic Myeloid Leukemia who are very encouraging with their experiences with CML.
I did find a free educational course that’s offered through Mayo Clinic for CML patients. It’s very informational and I encourage you to follow along.
Here are a several of the conversations you might like to join. Don’t hesitate to pop into any discussion and tag a member by tying in their @name. That way they’ll get a notification.
Chronic Myeloid Leukemia https://connect.mayoclinic.org/discussion/chronic-myeloid-leukemia-1/
~~~ @ginlori0509 who was recently diagnosed with CML started this discussion. There are some good links in some of the replies.
Lori, What a blessing !!! Thank you !!! Hospital missed PV Nov 2020 but;
Hospitalized same number 2022; 3x-4x higher (Doctors blame septic but same numbers 2022; needed to find answers) After bone marrow biopsy: Myelofribrosis / Myelofibrosis is considered to be a chronic leukemia. ((Doctor / Mayo Clinic - several websites) I've always had overload iron and first time low iron MVC + 72 (normal is 80-100)) Anemic. I've been screaming in pain when I over do it 2 hours after working- It's weird but I have bone pain and several other symptoms. I'm so excited to have you write and have more information. Wish I could go to Mayo Clinic, but insurance pays for Blood Cancer Clinic in Ocala, Florida. Several rare diagnosis
Lori, What a blessing !!! Thank you !!! Hospital missed PV Nov 2020 but;
Hospitalized same number 2022; 3x-4x higher (Doctors blame septic but same numbers 2022; needed to find answers) After bone marrow biopsy: Myelofribrosis / Myelofibrosis is considered to be a chronic leukemia. ((Doctor / Mayo Clinic - several websites) I've always had overload iron and first time low iron MVC + 72 (normal is 80-100)) Anemic. I've been screaming in pain when I over do it 2 hours after working- It's weird but I have bone pain and several other symptoms. I'm so excited to have you write and have more information. Wish I could go to Mayo Clinic, but insurance pays for Blood Cancer Clinic in Ocala, Florida. Several rare diagnosis
Happy to help you find answers and offer some encouragement! I had AML, acute myeloid leukemia. Actually I was diagnosed just shy of 4 years ago. Can’t believe how quickly the time has sped past!
Several rounds of chemo got me to remission but because of the mutations which caused the AML, I needed a bone marrow transplant to prevent a relapse. I’m now 3 years 6 months post transplant in a durable remission!
Happy-dancing through life now. ☺️ It’s my pleasure to be able to encourage anyone else experiencing a blood cancer that you can get through this! It’s important to stay positive. Here’s my story: https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/
Chronic myeloid leukemia can be very slow to progress, which is fortunate. It gives you time to find a good oncologist and get treatment options for your particular case.
You may have already read some of these articles but this is a fairly good one from Healthline.com. It explains CML and its symptoms. If you read down, you’ll read why CML can cause bone pain. The proliferation of white blood cells expand beyond the marrow and reach to the outer bone and joints.
Hello everyone! I was diagnosed 3 months ago with pv and secondary eryth(not sure how to spell it). I have been doing phlebotomy once a month for 3 months. Started with 300 CC and now at 500 CC since my numbers are still climbing. I tested negative for Jak2. I am so confused as to what to ask my doctor or how to move forward. I have not had bone marrow biopsy, but I have all the symptoms of PV. My big toe kills me on both feet. My skin is flushed on my face and arms. I am so fatigued and keep a headache. I have shortness of breath. I am seeing lung doctor and heart doctor this month. My journey started with a tumor on my spinal cord in Feb that could not be completely removed. My back pain has not improved and my doctor checked my CBC for 3 months before referring to oncologist. No one tells you anything really - and I feel a little lost. Any advice on the Jak2 neg and my numbers not responding with phlebotomies? Also what is normal on the phlebotomy? Sorry this is so long...what questions should I ask my doctor? Help....
Hi Tiger, I cannot stress enough that you must see an MPN specialist. I am a patient of Dr. Camoriano at Mayo Phoenix, and I love him. But, there are many others around the country who are equally as informed. I have been on interferon for 11 years. If you do some internet research, you will find many resources. Best of luck!
I’m no Dr. but I believe the HU is prescribed first.. I was almost 67 when I was diagnosed in spring of 2021… I had 4 phlebotomies(1 per week for a month), was put on aspirin, and HU… My oncologist’s main focus was lowering the HCT which was very high… I should say that I never even heard of PV before I was diagnosed… In my case, I have tolerated the HU very well.. I currently am taking 7500 mg per week.. I am also very active.. I bike every day as long as the weather allows for it and also do a lot of walking… Long sleeves and sunscreen are a must on sunny days… Honestly, despite taking HU, I feel really good.. no symptoms, high energy, no issues.. I also understand that some people cannot tolerate HU at all… It effects people differently… Hope this helps and best of luck to you and your husband..
My Polycythemia Vera and JAK2 positive test and diagnosis was on Nov. 25, 2022. After starting 1000 mg Hydroxyurea daily, 4 Phlebotomies and weekly CBC labs I was advised to return in late February for a CBC review. HCT history went from 66.3 to 37.6 as of Jan 26, 2023. HBC dropped from 21.6 to 12.6 over this period. I am 70year old female. Currently I am following my blood glucose levels (over the years successfully controlled by diet) it has shot up from 90 to 150 I am wondering if this is something that is to be expected.
My Polycythemia Vera and JAK2 positive test and diagnosis was on Nov. 25, 2022. After starting 1000 mg Hydroxyurea daily, 4 Phlebotomies and weekly CBC labs I was advised to return in late February for a CBC review. HCT history went from 66.3 to 37.6 as of Jan 26, 2023. HBC dropped from 21.6 to 12.6 over this period. I am 70year old female. Currently I am following my blood glucose levels (over the years successfully controlled by diet) it has shot up from 90 to 150 I am wondering if this is something that is to be expected.
I have seen my family doctor who sent me for more bloodwork. I seen a specialist who didn’t have my test results yet. I called him again on Friday, cannot get an appointment til Dec 21. My family doctor thinks it’s Polycythemia Vera because of my high red blood cell count and numbness in my legs. I’ve had one phlebotomy so far.
Yes I was the same and scared I am two years in now
My playlets were high as with my blood count the team at chemo hospital gave me venesection to reticent blood count plus put me on chemo tabs I have got my head round it now and am living with it
Yes I was the same and scared I am two years in now
My playlets were high as with my blood count the team at chemo hospital gave me venesection to reticent blood count plus put me on chemo tabs I have got my head round it now and am living with it
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Lori, What a blessing !!! Thank you !!! Hospital missed PV Nov 2020 but;
Hospitalized same number 2022; 3x-4x higher (Doctors blame septic but same numbers 2022; needed to find answers) After bone marrow biopsy: Myelofribrosis / Myelofibrosis is considered to be a chronic leukemia. ((Doctor / Mayo Clinic - several websites) I've always had overload iron and first time low iron MVC + 72 (normal is 80-100)) Anemic. I've been screaming in pain when I over do it 2 hours after working- It's weird but I have bone pain and several other symptoms. I'm so excited to have you write and have more information. Wish I could go to Mayo Clinic, but insurance pays for Blood Cancer Clinic in Ocala, Florida. Several rare diagnosis
Happy to help you find answers and offer some encouragement! I had AML, acute myeloid leukemia. Actually I was diagnosed just shy of 4 years ago. Can’t believe how quickly the time has sped past!
Several rounds of chemo got me to remission but because of the mutations which caused the AML, I needed a bone marrow transplant to prevent a relapse. I’m now 3 years 6 months post transplant in a durable remission!
Happy-dancing through life now. ☺️ It’s my pleasure to be able to encourage anyone else experiencing a blood cancer that you can get through this! It’s important to stay positive. Here’s my story:
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/
Chronic myeloid leukemia can be very slow to progress, which is fortunate. It gives you time to find a good oncologist and get treatment options for your particular case.
You may have already read some of these articles but this is a fairly good one from Healthline.com. It explains CML and its symptoms. If you read down, you’ll read why CML can cause bone pain. The proliferation of white blood cells expand beyond the marrow and reach to the outer bone and joints.
https://www.healthline.com/health/cml/chronic-myeloid-leukemia-symptoms
https://www.healthline.com/health/chronic-myeloid-leukemia/living-with-cml/effects-of~~~~
Another informational article worth mentioning was this diagram about how CML affects the body, again from Healthline.com
If you like to get a second opinion you’re always welcome to contact Mayo Clinic here: http://mayocl.in/1mtmR63
Are you currently receiving any treatment for the CML or are you in a watchful waiting window?
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2 ReactionsHi Tiger, I cannot stress enough that you must see an MPN specialist. I am a patient of Dr. Camoriano at Mayo Phoenix, and I love him. But, there are many others around the country who are equally as informed. I have been on interferon for 11 years. If you do some internet research, you will find many resources. Best of luck!
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Hug
1 ReactionThank you for this article I am 77 and in the same position as you so good to find others with the same condition my medication is similar too
My Polycythemia Vera and JAK2 positive test and diagnosis was on Nov. 25, 2022. After starting 1000 mg Hydroxyurea daily, 4 Phlebotomies and weekly CBC labs I was advised to return in late February for a CBC review. HCT history went from 66.3 to 37.6 as of Jan 26, 2023. HBC dropped from 21.6 to 12.6 over this period. I am 70year old female. Currently I am following my blood glucose levels (over the years successfully controlled by diet) it has shot up from 90 to 150 I am wondering if this is something that is to be expected.
Good to hear your ht levels have gone down and it’s so good to have someone to chat to with the same condition as myself I am also in my 70 s
Have you learned anything new? I’m at early investigative stage and scared. My red blood cells are high as is my B-12.
Yes I was the same and scared I am two years in now
My playlets were high as with my blood count the team at chemo hospital gave me venesection to reticent blood count plus put me on chemo tabs I have got my head round it now and am living with it
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2 ReactionsChemo tabs? I didn’t know anything like that existed? Are you able to work and do your regular things or have you had to scale back?
Hi Jules, good questions for @mumma and others living with PV like @kat101 @buckaroobanzai @mattymatilda @bohobruja @chadknudson @mikepv.
@julesc, are you finding that you are able to continue working and your regular activities or do you have to scale back?
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