I was diagnosed with ET 3 years ago. Ever since my diagnosis I have been monitored by a haemotologist in Brisbane (yes the other side of the world).
The first two years everything was ok. I was studying and working towards a new career. I saw my haemotologist every 3 months and apart from taking aspirin (cartia) everything was ok. Eighteen months ago I changed jobs and everything went downhill health wise. Within my first two weeks of the new job I could see it wasn't for me and the new employer treated me badly. I ended up in hospital and they discovered two bleeding ulcers. I lost a significant amount of blood. A couple of months later my haemotologist said I lost so much blood she decided to give me two full iron infusions two weeks apart. When I came for the second iron infusion I was advised that she will be leaving the clinic and I would see a new haemotologist.
I thought I turned a corner and the new year in 2023 would be more prosperous. But instead things went from bad to worse. My new haemotologist told me that I would need to get vene sections (phlebotomies) regularly every week last year in addition to starting hydrea as my haemoglobin and hematocrit were very high. I felt so ill and I was really red thinking I got sunburnt as I'm usually very pale. It wasn't the sunburn it was the high platelet count I was told. I started on 9 hydrea tablets a week in March 2023, then eventually it went up to 10 tablets and after afew months I stopped the vene sections. Things were stable with my blood counts for a good 6 months I would say.
Recently, in February 2024 my dose went up to 12 tablets a week. My haemoglobin and hematocrit shot up abit over the new year and I was advised not to eat red meat more than once a week by the haemotologist. The results of my blood counts from January to February showed that with the increase in hydrea and lowering of red meat, my haemoglobin and hematocrit went down significantly. My tastebuds haven't been the same since starting hydrea last year. I can't stomach any kind of meat most of the time and the smell of chicken especially makes me nauseous so when I was told to not eat red meat more than once a week it wasn't an issue. I had a metallic taste in my mouth for a while. My tastebuds eventually came back after afew months.
I know this is not a significant cancer like some others have but I still feel like my quality of life isn't great. Sometimes I can't sleep well during the night and I feel really depressed sometimes during the day because I'm so fatigued and can't bring myself to do anything.
I have tried changing my diet, going for more walks etc. But I still feel fatigue and this feeling of despair like I'm useless.
I have spoken to my gp about this. She just told me to keep a diary of how I feel including my headaches, nausea, fatigue, sleep etc.
I realise everyone tolerates drugs differently but I wonder if what I am going through is normal (whatever that is).
Thanks and look forward to hearing your advice.
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Deya08
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Sorry to hear about the struggles. Managing a MPN can be hard enough without the kind of work stressors you describe. Bleeding ulcers on top of everything else is quite a heavy burden. With things headed into a worse direction, I would suggest that a new treatment plan is needed.
I have not heard of hydrea (hydroxyurea - HU)causing dysgeusia, but it definitely can affect the surface of the tongue. That happened to me, turning my tongue as white as a snowbank. Hydrea can also have significant GI toxicities. Given the timing of what you describe, it is reasonable to think you are dealing with HU adverse effects. Note that fatigue is another common HU adverse effect. If it appears that HU is not working for you, then it is time for another treatment plan.
There are other options for treatment. Pegasys is a well recognized treatment option for PV and ET. Jakavi is available as a treatment option for people with PV who are refractory to or intolerant of HU. There is also the option to decrease the HU and increase the venesections. these are all options to review with your MPN Care team. Hopefully, you have already consulted a MPN Specialist rather than a regular hematologist. If not, suggest that now would be a good time to do so. mpnforum.com/list-hem./
Wishing you all the best and success moving forward.
I am not familiar with the telemedicine regulations in Australia. I would think that it is possible but do not know for sure. If it is not, it is worth traveling for an expert opinion.
The statement that Pegasys "is not suitable for my case and could make me angry and irritable" does not make very much sense. Do you have a history of significant psychiatric disorders? How does the risk of depression or anxiety compare to the significant adverse effects you are already experiencing? This is the list of contraindications and cautions from ePocrates. epocrates.com/online/drugs/...
Contraindications / Cautions
hypersensitivity to drug or ingredient
hepatitis, autoimmune
hepatic impairment, Child-Pugh Class B-C
neonates
infants
avoid: breastfeeding (pts w/ cracked nipple or bleeding nipple)
caution: female pts of reproductive potential
caution: elderly pts
caution: psychiatric disorder
caution: ANC <1500
caution: Plt <90,000
caution: Hgb <10
caution: renal impairment
caution: cardiac dz
caution: thyroid dz
caution: diabetes mellitus
caution: autoimmune disorder
caution: eye disorder
caution: pulmonary dz
caution: organ transplant
Note that a caution does not mean that you cannot take a medication. It does mean that you need to be mindful of the risks of particular adverse effects. The decision about which medication to use amongst the well-recognized treatment options should be based on your treatment goals and risk tolerance. Pegasys/Besremi and Jakavi are both well recognized options to treat PV. It is your prerogative to pursue these options if they align better with your treatment preferences. Note that there can be resistance since these medications are significantly more expensive.
We are all different on how we respond to the different treatment options we have available. I was refractory to an intolerant of HU. I responded much better to Pegasys/Besremi both in terms of efficacy and tolerance. While my response does not predict your, know that the are many of us who respond well to the interferons.
Assertive patients receive higher quality care. Passive patients do not. We must be our own best advocates. If you believe that a different course of treatment is in your best interests then it is your right to pursue a different treatment plan.
My hematologists also stressed that interferon was not right for me especially after I told her that I had previously experienced depression (not diagnosed).It was probably just a phase during divorce.Maybe also just social isolation.I refused to choose HU despite her trying hard to convince me that it was the right choice.I choose a low dose of interferon.After the first month when my platelets were around 450(?) from 600+ she said ,"you picked the right treatment ".I felt happy for listening to my gut feeling but mad at her for pushing me towards HU.
I also had blood clots (I am 40yrs old) so I take dibigatran.Is it really a good idea to be on it for life?I think it is 150mg twice a day.
Congratulations on your self-advocacy. Glad to hear that the doc agreed with your decision.
Given that you have ET and a history of thrombosis, you will likely be on blood thinners for the rest of your life. The question would be whether Dabigatran is the right choice for you. If you are having side effects or have specific concerns, this would be an issue to discuss with a MPN Specialist. One factor to consider would be whether the thrombotic event occurred before of after you initiated cytoreduction, The bottom line is that all of the treatment options for MPNs come with a risk/benefit profile. We have to evaluate and compare each of our options to make the best choice. Sometimes we only find out what works best by trying. Do note that Dabigatran is not a drug that you can just stop taking. See this Black Box warning "Premature Tx Discontinuation. incr. thrombotic event risk when D/C dabigatran for reasons other than pathological bleeding or completion of therapy course; if must D/C dabigatran, consider administering another anticoagulant." epocrates.com/online/drugs/...
I am in the UK different systems I know. I asked for a specialist referral which was done with Professor Harrison all by phone as she thinks the journey to see her is too far. She had all my bloods etc sent to her.
I strongly agree with Hunter. You do need to see an MPN specialist. You've been through the proverbial ringer. Having been in a similar situation a few years ago - HU plus phlebotomies and then iron deficiency anemia with no real improvement, I switched specialists and my new doctor (an MPN specialist) dramatically changed my treatment plan. I've been doing really well with the changes since. But, as is often noted here, we all respond differently so the key is to find the right doctor who will work with you.
I am so sorry that you have had to endure this but, rest assured, there is an answer out there that will work for you. The key will be a new doctor. Wishing you the best. Stay hopeful - there is a solution - it just has to be tailored to your body's unique requirements - which is the case for many of us.
I agree, finding the right doctor and making yourself a part of the decisions is key. Unfortunately, we need to be the strongest, when we feel the weakest, it seems.
I am in France.
I had to get a second opinion about HU, but I couldn't travel. I was able to get a letter for a second opinion from my GP and a teleconsultation with a specialist in Paris. If I wasn't so lucky, I would still have made a trip. Not sure how, but I was going crawl there if I had to 😊
Different people react differently to different medecine and there are different options available.
I have ET with Jak2. I tried Interferon first but it didn't work for me, sadly.
I am on HU now, but had to lower the dose due to side effects. I haven't found my perfect solution yet, but it's a process.
I also had red skin with the higher dose and I still don't sleep well.
Good luck and hope you can get a second opinion and find what works for you.
Take care if yourself.
This group is fantastic for moral support! You are not alone.
Doctors that are inexperienced prescribing interferon for ET and PV tend to exaggerate the side effects. The experienced doctors like this one have found the side effects are "minimal" for most of their patients. Maybe you should show this 30 second video to your doctor: youtu.be/OsdoYoA1kLQ
Hi .. I am in NZ .. just read your story and can empathise a wee bit with what you are going through .. we all find it a different journey but similar . I was only diagnosed August last year .. for me it is the brain fog that gets me .. in the most part I try to be positive and face each day as a new day .. I have just recently also been given a high cholesterol level of 8 and need more medications !!! I am researching how to be more and more healthy .. don’t drink or smoke could lose the wee bit around my middle . I feel I am active enough .. work on the farm ..I have found this web site really informative and urge you to stay in touch .. I don’t post much but read it every day .. take care
Contact an MPN asap . You can email them which is what I had to do when I reacted badly to Hydroxy with extreme fatigue & gastric problems caused solely by the drug. I do not live near an MPN but they telephoned and I was changed to Interferon which is a brilliant drug. Only an MPN will be able to help your problem properly. You really have to protect your own treatment & this sounds that Hydroxy is not the drug for you.
I took myself off Hydroxy completely as made me so ill. I told my Haemotology I was doing it & why & contacted MPN in London . Most MPNs do phone consultations as few in our areas too. Julia UK .
I’m sorry to read your post and see what you are dealing with.
I find also the fatigue hard to adapt to. I thought it was from the HU tho now think it must be from having ET JAK2.
I was diagnosed last year. I spent 6 months on a low dose of Hydrea and aspirin (I’m 61 and had 2 TIA’s a few years ago). I stopped taking HU due to side effects that I was not happy to continue to suffer with for life.
I stopped HU in Nov 23. We are presently overseas for 4 months and a friend who is a doc here in South Africa said he would order some bloods for me to see how my count was going. The numbers had gone up to the 600’s, the same as before I started on HU. I have been so tired and not feeling like exercising. I feel pressure in my head and tingling in my body. Not much to complain about really tho I’ve always been well and it’s discouraging.
My doctor friend here said to forward the results onto my doc and haematologist in Oz and follow their instructions which I have done. I’m guessing not much can be done till our return end of May.
I too live in Brisbane. I don’t want to go on HU again. The haematologist Dr Rebecca Cleary said she would begin me on Pegasus injections when I return home. It takes some time to get the right dosage so there wasn’t time to begin before we left.
I see Dr Cleary at North Lakes. I also saw Dr Jason Butler at Chermside for a second opinion. I had wanted to see Dr Steven Lane who is known as the best MPN haematologist in South East Qld. He was away so I was unable to see him. My brother’s wife also has ET (not JAK2). A small world. She is on high does HU. She did see Dr Steven Lane who was very happy with what her haematologist was prescribing so that put her at ease.
I have done zoom calls with Dr Cleary at home in Brisbane and even here in South Africa so I’m sure many other clinicians would be happy to do the same.
Wishing you the best as you search for answers and better treatment 🌸
Thanks for your reply Sharon I really appreciate it as I didn't even know about amy of these specialists in Brisbane. I will try to get a second opinion with the specialists you recommended. Enjoy SA. I was in Cape Town before the pandemic.
I know how you feel, just when you think you've turned the corner another one appears.I'm on 11 doses a week of hydroxy. On the days with double doses it really messes with me; well it be diaherrea or constipation.
What I have found is that a high fat low/no carb diet really helps my energy levels. If I get in the gym for some light exercise 3 to 4 times a week, 20 minutes on a bike and 20 minutes of strength training then 20 minutes in the sauna I seem to do better.
I don't think any of the doctors really know his iron levels relate, their is theory then our unique reality. My Dr just had me add one iron pill a week to my routine. The first week my Hgb shot through the roof and I was out of it for the whole day!! The next week prepared for the worst nothing happened after taking it. So who knows, the only predictable thing is our bodies are unpredictable.
One thing that helps me is that I bought a Hgb meter like the vensection people use and check my levels once a week. If they jump up, I check the next day and if still high I call the Dr. And they schedule a veneration for me.
Wish me luck as I take an iron pill today and spin my bodies roulette wheel!
Best of luck and keep trying different listless l lifestyle things and see what works for you.
I second and third the idea of getting a video conference with an MPN specialist. I live in a moderate sized Pacific NW (USA) city and quickly realized that my local oncology offices had pretty limited experience with MPNs. I consulted with a specialist at the Mayo Clinic when first diagnosed with PV. I am on a low and highly effective dose of Besremi (interferon) and am also trying to sort out the cause of sleep problems, fatigue, and other malaise which can sometimes overwhelm me for weeks at a time. I plan to go back to making notes on a calendar as to what symptoms happen and when. Otherwise, I don't really know how to evaluate my treatment and my approach to this blasted disorder. On a non medical side, I would also like to suggest to you a Chinese exercise called qi gong. Becoming uncomfortable with my yoga practice due to GERD and fatigue, I started doing qi gong at the advice from an acupuncturist. I practice with a small local group a few times a week, and stream some instruction as needed and desired (slipping in even 10-20 minutes of exercise helps). You can find so many teachers online, and adapt their practices to suit your capabilities. I suggest Nick Loeffre and Nate Guadagni and William Holden. Qigong offers my body little windows of calm and peace--and some hope of keeping as healthy as I can be.
Hello Deya08… I am also in Australia.. in Melbourne. So sorry to hear you are having such a rough time .. I am fairly newly diagnosed and have discovered how hard it is navigating this journey with an MPN.
Have you looked at the Facebook group MPN Australia & NZ Support Community. It’s a closed group you will have to answer few questions… but there you will also find wonderful support and there will be members in your local area that could guide you in direction of MPN specialist or such. They also have a coffee/tea meet up too I think up your way.
It can be such an isolating feeling dealing with health issues.. be kind to yourself and know you will find a solution and help. Take care.
Thank you everybody for your kind suggestions. Pachena I contacted my gp to get me a referral to speak to Dr Lane so we'll see how that goes. I hope you are all doing well at your end and will keep you posted about any developments.
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