Feeling better after 4 weeks phlebotomy.

[josup26]

To all my helpful friends out there. I can say I am feeling a bit better my hemacrit started at 59 I'm down to 49 after 4 weeks. I am due for a blood draw today. As the numbers become more normal, my hemo wants me about 45. Due some of the side affects start to become less bothersome? My biggest complaint is a slight headache and though I am eating not a great appetite. Thanks for any info. Best Regards

[Manouche]

See, Your hematocrit level improves as expected. Your slight headache is also likely to get better and better although the symptoms are much more unpredictable.

[josup26 in reply to Manouche]

Thank much for reply. I'm keeping positive the headaches will improve. Regards

[Ebot]

Hi there. So glad your numbers are dropping. Yes, 45 is the magic number.

I always knew when my haematocrit was up. It felt like I had someone sitting on my head! I found the venesections really improved my headache symptoms. Though in the early days the procedure knocked me out. But then I was extremely anaemic as well.

Worth just checking that your spleen isn’t causing any of your eating issues. Otherwise it might be down to general underlying anxiety. Maybe raise it with your haem team? Keep well.

[josup26 in reply to Ebot]

Thank you so much. I so appreciate all the kindness on this site. I know my Hemo is watching my numbers very closely. Best regards

[Applesnpears in reply to josup26]

Hi Josup26

Make sure you discuss any symptoms/ changes with your haematologist. Getting the blood results back to "normal" is good but only part of the story with MPNs. The way you feel is equally important. Ask for a symptom assessment form so that you can keep track of changes over time.

[Wyebird]

Glad you are on the right track

[hunter5582]

I am on a phlebotomy-only treatment regimen for PV, which has been the right way to go for me. Once the erythrocytosis was under control the biggest change was that my blood pressure went from Stage 1 hypertension (135/95) to normal (115/75). When in pain/under high stress my BP has spikes as high as 240/110, so reducing BOP is a really big deal. Lowered viscosity is a good thing!

Since I also am in thrombocytosis (range 510 - 750) decreasing the erythrocytosis is very important in preventing thrombosis. Fortunately I have never had a single incident of thrombosis despite 30 years+ of a MPN and I would like to keep it that way. I actually seem to tend more towards hemorrhage, especially when my platelet levels get higher.

Unfortunately, they over-phlebotomized me. Was going every three weeks for about 5 months. I ended up so iron deficient that they could not even measure my ferritin levels. This actually put me into erythropenia. After a few weeks on iron pills, I decided the side effects were worse than the anemia. At this point, I am just eating a health iron-rich diet and letting my body recover on its own. Erythrocyte levels are very gradually increasing and we monitor about every 6 weeks. Fortunately the only symptom of the anemia has been a diminished energy level/more easily fatigued, but I can cope with that.

So on the whole, I would say the phlebotomies are definitely worth it for treating PV. For me, they are far easier to tolerate than the hydroxyurea and significantly safer. Note: I am HU-intolerant. Do pay attention to what your body is telling you. Between the MPN and its treatment good nutrition is more important than ever.

All the best

[josup26 in reply to hunter5582]

Thank you Hunter you're the best. I can't tell you how I appreciate all the encouragement this site has provided for me. This is all very new to me and I become more relaxed when I hear positive ways to handle PV. My hope would be your treatment keeps me under control opposed to drugs. I eat a very healthy diet and pretty much always have. My numbers are good in all of my other counts. I'll keep you posted. Best Regards

[hunter5582]

It is important for all of us to know what the different options for treatment protocols are. One size does not fit all. The way each of our MPNs present can be quite different despite having the "same" diagnosis. I am age 64, JAK2+ PV, with co-occurring conditions that include Neurofibromatosis Type 1 and a related recent hx of hemorrhagic pilocytic astrocytoma. Also have a hx of von Willebrand factors dropping below norm and excessive bleeding/bruising when on aspirin. No thrombosis ever. The phlebotomy-only - no aspirin, no chemo is the right approach for where I am now. Someday it may change. I would not advocate that it is the right protocol for everyone.

If you would like to know more about this treatment protocol here is the interview with Dr. Jerry Spivak about it. mpnforum.com/spivak-how-i-t... . I have a copy of the full journal publication that is referenced here and can send it if you are interested. Message me your email if you would like a copy. What is important to note is that Dr. Spivak does factor in the needs of each patient and does use chemotherapy and aspirin when the patients needs warrant their use.

All the best.

[josup26 in reply to hunter5582]

I would appreciate a copy of Jerry Spivak's journal thats very kind of you. Regards

[hunter5582 in reply to josup26]

If you send me your email I will forward the article.

[josup26 in reply to hunter5582]

Hunter can you please tell me how I privately email you to get the info I would like you to send me. I can't figure it out. I got a message it was a no no to provide my info in the general chat room. Thanks

[hunter5582 in reply to josup26]

Use the messaging function rather than the general chat forum

[Hidden in reply to josup26]

Hi josup26,

I'm commenting on this post as a member from the HealthUnlocked support team.

We do not support members sharing their personal contact information on community pages.

As a result we will delete any messages regarding personal information. This is to keep our members safe.

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HU Support

[josup26 in reply to Hidden]

Thank you for that information. Sorry