Hi everyone. I have been reading your posts for several months and need to introduce myself. I was diagnosed with PV Jak2 at age 65 and am now 73. Platelets high also. My treatments have been aspirin and phlebotomy every eight weeks if hematocrit is above 42 which it always is. Symptoms began about 2 years ago: heavy painful legs with bone pain and tingling feet, some fatigue, brain fog and frequent shortness of breath. Although my hematologist suggested taking Hydra many times, he didn’t push it and I refused as I feared side effects and thought I was pretty stable with treatments as is. But I moved recently and new heme is awesome and lovely. She has convinced me I need the medication as I am at high risk for thrombotic event at my age. I certainly would like to cut risk of stroke. But I still hesitate a bit because I want to get the new shingles vaccine (a two shot process over 6 months) which is largely unavailable right now.
Despite symptoms I’ve been leading a very active and fulfilling life. Hate to change that. I’ve read on this forum that many of you struggle with taking this chemo treatment.
So I’m open to hear your advice or experience or comments. Thanks so much.
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falconered53
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In Canada the new shingles vaccine (Shingrix) is not a live vaccine so we can get it, just like the flu shot, even if we’re taking HU. But I think that perhaps it’s a different vaccine still in the UK if that’s where you are.
I would give it a try. You just have to see how it works for you. We are all different. I have been on it for 14 years with no real side effects until I transformed to MF Now on Jakafi. I'm 74 now.
Hi. I have a question. If although taking hydro one cannot avoid the MF what is the use of this treatment and not just take aspirin? Naive maybe but still.
In my case I needed to bring down platelet count as well as get more time between phlebotomies to try to build up my ferritin a bit and be less exhausted all the time. It has really worked for the platelets and I am beginning to go a third month between phlebotomies instead of every 8 weeks.
Having resisted drug treatment for a long time my platelets hit 1700 and I was being regularly venesected. At that point it was a no brainer to start Hydroxy. My counts tumbled I felt a new person. The Monster turned out to be a Miracle Worker. Current evidence suggests that venesecting long term is not best practice - someone posted a link to the research very recently. All the best.
As you can see from the varied responses, the real answer re. HU is that it depends on how you respond to it. We are each different in how our MPN presents and each respond differently to the various chemotherapies. Many docs are most familiar with HU and it is the cheapest of the various meds available (some insurance companies may require you to try it first). It is very important to understand how HU (or any drug) works and what the risks and benefits are. Like many chemotherapy drugs, HU is a toxin. It is cytostatic - it interferes with DNA activity. It reduces hematopoiesis (production of blood cells), which is its benefit for treating MPNs. However, it interferes with all DNA activity in the body. HU can break allele strands and interfere with the DNA self-repair function at a cellular level. It is teratogenic, mutagenic, carcinogenic, and possibly leukemogenic (note the latter is controversial/inconsistent in research). It may suppress the immune system - you need to avoid live vaccines and it may cause immune related problems like mouth ulcers and thrush. It can also compromise your intestinal endothelium, causing constipation or other GI symptoms. For men, HU can cause hypogonadism (oligospermia/azoospermia - well known)(recent research indicates lowered testosterone possible - this finding not accepted in clinical practice yet). While not common, there are some very serious side effects related to compromised vascular endothelium (e.g. leg ulcers and gangrene). Now all of that sounds really scary, but many people take HU and do not encounter these side effects. You have to weigh the risk of thrombosis and damage to major body organs, including the brain. If your platelets are too high, you may also develop Acquired von Willebrand Disease and be at risk for hemorrhage. Hyperviscosity of the blood will also drive your blood pressure up and hypertension carries all sorts of risks. So back to where we started - it all depends on how you respond to HU. FYI - I turned out to be HU intolerant. Even on low-doses, I had some toxic effects. Fortunately, those adverse effects have mostly abated since I discontinued as these side effects usually do. Unfortunately, these decisions are not always black and white. Sometimes we just have the make the best judgement we can based on the information we have. Hope all this helps. All the best to you.
I currently an on a phlebotomy-only protocol for PV (age 65). My form of PV has been relatively indolent. Despite 30+ years of MPN, I have never had a single episode of thrombosis. I did have somewhat excessive hemorrhage when on aspirin. The MPN specialist I saw took me off aspirin as he concurs with the American Heart Association that people age 60+ are at greater risk of hemorrhage and should not take it unless symptomatic for thrombosis.
This may change in the near future. We are considering PEGylated Interferon due to some recent indication that the PV may be advancing. I have had a few incidents of ocular migraine and one apparent episode of silent migraine that triggered palinopsia. Because of my hx resection of brain tumor, I am at risk for continued palinopsia episodes. I may have to choose to treat the symptom (with Topamax) or treat the underlying cause (with PEG-IFN). Given the emrging bady of research indicating benefit to earlier intervention with PEG-IFN, I am leaning that way. Time will tell.
I do take s lovely pile of other meds and supplements, but the most relevant would be: Curcumin, SPM Active, L-Glutathione - inflammation, Belsomra - insomnia, Nexium - GERD, and Losartan - very low dose for hx of hypertension.
Hi there, I was diagnosed at 65, now 74. I had no symptoms and was diagnosed through routine blood tests.i was on aspirin for 5years and tried to avoid hydroxy until I was due to have knee surgery at age 70 and my platelets needed to come down. Like you I was very wary of chemo but neither did I fancy being open to a stroke etc. I have been on them for 4years now and my platelets have been relatively stable in that time. I have a brilliant haematologist who I trust completely. I know many people have had various side effects but aside from feeling overtired every now and again it’s been fine.
I have been on HU for 5 yrs. Platelets normal now. I am dealing now with skin cancers at least one a month. Dermotologist sp? says HU is the cause. I am 84 and in excellent health with clean arteries. This is really a tough decision at my age. I will have to make an appointment with hemo for help. I hate being chopped on every month. Highest platelets were 750.
I am 78 and been taking 500 mg HU daily since June 2022, and then put on every other day. I am still having daily headaches, Hematologist just told me I could stop HU for a month because labs were all good….platelets 528. I am going to ask about low dose Pegasys when I see her again.
I know I’d far rather have shingles than a stroke. Having suffered one at the age of 50, I am well aware of the the consequences. Besides it impacts on travel insurance lol.
dear falconered. I have been on Hydroxycarbamide for 3 years was not given any choice’s. I have been fine on it I think. Some small problems may just be age (74 ) now. They want to check me for hemochromatosis. Hoping I haven’t got that. Maybe the pills but I think it’s better than risk a stroke.
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