How fast do you start to feel hydroxyurea symptoms?

Thank you for posting these results. It helps to see the actual numbers. I’m not a medical professional but have had a zillion blood tests over the past 5 years, sometimes daily for a couple of months, so I’m pretty familiar with what causes my doctor’s eyebrows to raise and what doesn’t.
The hemoglobin numbers included in this post and the other reply where you posted the log of repeated tests were really interesting.

Doctor’s look for trends in blood numbers to get an overall picture. The numbers in your log do show a small upward trend in your husband’s hemoglobin from 2021 to January of 2024. All of 2021 he was solidly in the middle of the scale at 14.8.

His hemoglobin level did increase to 17.2 by the end of 2023 and January of 2024. But they were still well inside the normal parameters set by the hospital lab of 13.5 gm/dL - 18.0 gm/dL. When he started treatment for PV in February his numbers were still in the normal range. What were his hematocrit numbers?

Now, while your husband is in treatment for PV, these numbers are dropping. Which is to be expected. His hemoglobin, which seemed to look normal all along has now dipped below the accepted level at times to where he would be feeling the effects of the lower red blood counts.

Quite frankly to my untrained, but “familiar with blood-work eye”, I’d want to know how the doctor came up with the diagnosis and treatment for PV. Because your husband’s numbers, unless I’m missing something, weren’t out of the normal range. And generally for an early diagnosis with PV, the first line of treatment is a phlebotomy (removing a measured amount of blood) to reduce the over abundance of red blood cells.

You wondered if this is a fluke or not to have blood numbers rise. One thing I do know is that hemoglobin/hematocrit levels can raise for a number of reasons. Did your husband have any genetics run to see if he has a mutation of a gene such as JAK2 which could cause this. Do you know if he has sleep apnea? That can have his kidneys calling for an increase of oxygen if he is being deprived of oxygen while he sleeps.
Has he had an EPO blood test to check to see if that could have caused a rise in his Hgb and hematocrit. .EPO is a hormone primarily made in the kidneys to stimulate the production of new red blood cells. In people with PV, high red blood cell counts can suppress EPO levels.

***** EDIT: I just went back to the very beginning of our conversations a few months ago and your husband did have the involvement of the JAK2 gene. So part of what I’ve written above will change. However what remains the same is the blood numbers didn’t reflect PV. I did see that your husband had phlebotomies to lower the hgb and hematocrit however.

It was mentioned in a previous post that he had elevated platelets. That is also a condition brought on with the mutation. So that is why your husband is being treated. But for ET, not PV. Or he could have both??
But now that those numbers are back in the normal limits the questions you’ll want to ask is if he can adjust his dosage.

I'm hoping this link will open to show Joe'sPLT LEVELS over months and years https://search.app/RrhAMPf47QyLjv3A6
Not sure if I sent it before.
Thank you so much for your knowledge and patience with me. 🙏

So just in case I didn't send correctly before this is Plt levels over months to years.
Hu was used for short time and stopped. Then now the Jakafi. But coming down again. So hopefully we can get less pills for control now. And I will ask about maybe ET instead of PV. He get ultrasound on pituitary gland thyroid on the 13th to see what's going on there too thank you for everything again. 👍😊🙏

And have the EPO blood test checked

Good morning, @onthejoedock ( and Mrs Joe!) I’m a bit chagrinned that I’d forgotten about our conversation back in February where you mentioned Joe had platelets in the 800s. I re-read all of the old replies this morning to refresh my memory. I should have done that yesterday before responding. So I apologize…let me start fresh.

Having read through all our conversations I have the complete picture now that Joe has the acquired JAK2 mutation which is causing his platelets AND red blood counts to be high. This can have the potential for serious risks of blood clots. So that is why Joe’s doctor is treating his condition which has been diagnosed as having both ET and PV. His initial diagnosis was ET but then PV was added. Because of this confirmation of PV, there’s no need for Joe to have the EPO test.

Here is one of our previous conversations with a good article imbedded to read about the JAK2 mutation.
https://connect.mayoclinic.org/comment/1009921/

While the treatment plan is working to bring Joe’s escalating blood numbers down to a normal level, it’s also making him miserable. There can be a period of trial and error before finding the middle ground with dosages. Now that his numbers are fairly normal, I’d definitely ask his doctor if there can be a modification in the dosage level. I’ve had similar experiences myself, being able to lower a dosage. As long as I was maintaining the good numbers I could stay at the reduced rate. Sometimes the cure feels worse than the ailment, right?

I've had ET for 15 years. I am 70 with ET-CALR. I felt less fatigue on HU, but it hits different people in different ways. If your husband's blood levels are good, ask the doc if he can lower the HU dosage?

Eating problems may be due to enlarged spleen that goes along with this family of diseases. Ask doc about this?

There's a fair amount of energy drain when a body is constantly trying to crank out unnecessary blood cells, filter them, and also filter the chemo. Learning to live with lower energy levels is part of the landscape.

There is also sometimes some low-level but constant depression that go along on with a chronic illness. That can sap energy levels also. I retired and my mom died, the same time I started HU. Took me five years to come out of that funk. Doctors are very poor at addressing the mental health angle. One told me I should just feel lucky not to have full-blown leukemia. But you could try to discuss with doc.

It is helpful for me that my husband understands he is not getting his high-energy wife back. He accepts that this is a forever situation, and we try to stay focused on the new normal and enjoy the life we have. This can be really hard for friends and caregivers, so am glad you have taken this step to talk to others in this situation.

Best of luck with the doctor visit!

Yes I'm starting to catch on to our new normal for sure. Thank you for taking the time to reach out to me. It is very helpful. Do we do what we can do when we can and enjoy every moment.
Thanks so much.

I meant we do do what we can do. lol 😆

Aww sorry you had to go through all that I should've been more organized, but my mind works and works and works and maybe maybe something else could be done or to give Joe energy but I guess we're on the right track and I'll just maintain and be happy with everything staying OK and not getting worse thank you so much, though. I appreciate all the knowledge you passed on to me, check out the doctors response on the 18th. Thank you so much. Take care of yourself.

Oh, please, no worries over not feeling organized. I’m a hot mess when it comes to that!! 😅 My mother tried in vain to get me more organized while she had her mitts on me and then passed the baton to my husband! We’ve been married 50 years and I think he’s finally given up. Thank heaven’s he’s organized!
I’m just not a linear thinker! But I do love helping people and I know how to research the heck out of things. I also got a huge education and personal experience by immersion in the world of blood cancers and bone marrow issues with my AML/bone marrow transplant. My doctor even told me a couple weeks ago that I should consider returning to the U to get a degree because I really took to this incredibly fascinating and complex world of blood cancers. We have some great chats and he is fully supportive of my mentoring in Connect. But bless his heart, at 70, I’m not going back to school. I’m having way too much fun without that type of pressure. But I can continue to use the knowledge I’ve gleaned to offer some better understanding and hope for anyone going through a blood cancer or blood conditions.

From everything I’m understanding now about Joe’s situation, he is on the right track and responding well to the treatment…just maybe needs some dosage tweaking. In the meantime it’s important for him to listen to his body and take naps or rests when he needs. I know, truly, how hard that is! I’ve never been a sedentary person and resting, yikes, that was one of hardest parts of my odyssey…ok there were worse things, but it’s the fatigue I remember vividly. So hang in there, Joe. I just feel things will be on the upside soon enough!