Outburst of a young PV patient

[Zukobs]

Hi guys, im not diagnosed yet, but my doctor suspects about PV and im completely terrified. Last year my Hct was 54%, he said to wait some time so that i could get tested again, now is at 52%, Hb was 16,3 and now 16,1. I am feeling some of the symptoms and im about to get tested for JAK2. The thing is, im a 20 yo male and i was born with a kidney disease, so i was already used to the fact that at some point i would have to need dyalisis and my life would be significantly afected, but with luck, this will(?) happen just in the future (i still have almost a entire functional kidney left). What i mean is, i always dreamed of becoming a doctor, and after a lot of hardwork i got in med school (im currently at my second year), so, with this new cancer stuff, i feel like theres only so much my body can take, im really scared of not being able to graduating and live the things i want to. All i do these days is cry over and over again, and im posting here just to find some comfort in strangers experiences, so, please, help me, ive been thinking about suicide too and i dont wanna put my friends in all of this drama, so i havent bring up this subject with them yet. Also, im not a native english speaker (if u didnt realized hahahah) so, im sorry for the bad grammar, i just came here bc u guys seem great and i theres no such online community in my country

[mhos61]

Hi there.

Firstly, congratulations on getting into med school. Your work ethic is to be commended. You should be very proud of yourself.

It is a very anxious time waiting for a diagnosis, we’ve all been where you are now, so totally understand.

It’s good that you’ve found us, and we will support you. That’s what we do! However, I think it’s of the utmost urgency that you discuss your anxieties with someone in your family or social group, especially as you’ve mentioned suicidal thoughts. Please reach out!

It’s also important to note that your ‘erythrocytosis’ presentation could be ‘secondary’ PV, maybe in relation to your kidney issues? Your doctors are quite rightly testing for the Jak2 mutation to determine a diagnosis of Primary or Secondary PV.

If the outcome is Primary PV, it’s not a death sentence. There are treatments such as Pegasys, which younger patients such as yourself should always be offered. Pegasys not only controls disease, but it has been found to actually halt disease at a molecular level.

There is hope, and research into MPNs and treatment is always ongoing.

Whilst this forum exists, you’re not alone. Please keep in touch.

Mary xx

[Mostew]

So glad you have found us . It’s a great support . People are so caring .

U echo all mhos61 said .

Most important thing is to speak to someone . Is there any one you feel most comfortable with . ?

If no one in family how about a fellow student ?

At the moment how you feel emotionally is the most important thing to address .

Try and eat well. Food is medicine to .

I send Warmest thoughts to you xx

[Mostew]

Ps . Don’t know where you are living but if UK Samaritans is good. They are just a call away ... x

[Cja1956]

Similar to the other replies, congrats on getting into med school and following your dreams. I understand your health issues are a concern, but I am more worried about your emotional state. Yes, we are a great support system, but you really should find someone to talk to about your suicidal thoughts. Maybe there is a counselor at school that can refer you to the right person. You have your whole life ahead of you and a promising future, so please get some help for your depression. We are rooting for you.

[Rae25]

Hi there, what surprised me most from your post was that you said you’re not a native English speaker! You have far better grammar than many people I know! Congratulations on getting into med school too, you should be really proud. I’m sorry though to read you are struggling with your thoughts and feelings. I too have a history of depression and anxiety so I can sympathise entirely. If you’re based on the UK, you can self refer to the IAPT service through the NHS. I have had experience of their services and highly recommend giving them a call if you can. Please remember that things will get better. A quote that IAPT gave me at a therapy session; So far, you have survived 100% of your worst days. You’re doing great.

[Jennytheb]

Hi, can totally understand your anxieties at the moment, please do find someone to discuss this with. All is not lost I am sure, even if you are diagnosed, as a med student you know there is help out there. First diagnosis scares everyone, if you look back on this site you will find this, however each day more is becoming known about these illnesses and more specialists becoming clued up about it all.

You have done well to find this site, really wishing you well, take care and take heart. x

[HardwareHarry]

Hi Zukobs,

Just to re-enforce everything that people have put below. I got my diagnosis in 2016, and though I'm older than you I was considered a young patient. Speaking from own personal experience over the last five years, I can tell you that the treatments for primary PV are pretty damned good. If they caught it early enough, venesection (taking a pint of blood) around weekly relieves quite a few symptoms and avoids your blood getting too thick with relatively few side-effects.

Pegasys, as others have mentioned is an excellent drug, and one that is very effective at controlling PV and its associated risk, and others like Ruxolitinib are also being used with great efficacy. It sucks, especially when you're young, to be told that you have something that can't be "cured" per se - there is no surgery to "fix" the problem, but while it can't be cured, it absolutely can be managed and managed very well. Many people with PV lead a "normal" life (whatever that is! :), as long as your doctors are keeping an eye on your blood and making interventions when necessary

I echo all the things other have said. From first hand experience it can seem completely overwhelming when you are going through diagnosis. When you next meet your Doctor, make sure you ask them questions that you need to know the answer to. There is nothing about PV, as long as it is well managed that will prevent you enjoying medical study, becoming a Doctor, and perhaps one day having a family and doing almost everything you had planned to do.

Cheers,

Paul.

[Mazcd Partner MPNVoice]

hello Zukobs, you really do need to speak to someone urgently about your suicidal thoughts, you must speak to your doctor or a counsellor, or a support organization who can help you, please do this as a matter of urgency.

With regards to your pending diagnosis, it is a very unsettling and scary time when you are waiting for the results of tests, and not knowing at the moment whether or not you have PV and how it will impact on you, particularly as you already have other health issues with your kidney disease, and of course this is causing you to be anxious and worried, we understand that and hopefully reading some of the posts from others will help you understand more about PV, I would also advise that you read the information we have on our website mpnvoice.org.uk and read some of the patient stories and look at the videos, it should give you a better understanding of PV. Once you have your diagnosis you will be able to move forward and hopefully feel a lot better.

You are under a lot of stress at the moment, so please do seek help from a professional. Best wishes, Maz

[Greenbus99]

Hi Zukobs, I hope you get some reassurance on this site . The hardest place to be is in the “ not knowing “ while waiting tests and investigations. There may well be other reasons that your HB and HCT are elevated and not necessarily polycythemia. I personally do not have any illness and am on this site as a mother of a child who was diagnosed with Polycythemia Vera ( primary PV) when he was 14! He is now 18. Like you we were shocked someone so young was diagnosed with this illness when all the literature suggested much older age range. Conor had several mini strokes TIAs but no lasting affects . His HB was 23 and HCT 0.68 on diagnosis. He has had soooo many venesection , lost count after 50 , has tried treatment with Interferon but did not work for him and is now very well managed on Hydroxycarbamide medication and venesection every 6-8 weeks. Conor leads a very normal life, attends college and a part time job. He was back to playing cricket and football . Hoping to go to University in September. He has not let his diagnosis define who he is or take over his life. Initially yes it was a lot to get our heads around and lots of regular hospital appointments but they are getting less and more infrequent , and fit in around the rest of his life and is now normal for him . He has always had great medical care so the first thing you need is to get referred to a good haematology doctor who specialises in MPN . If you do get a confirmed diagnosis , take ownership for this in the same way you have with your renal condition , you can control this don’t let it control your life. Continue with studying medicine and live and plan your life as normal. We treat this like any other long term condition for example type 1 diabetes, it will always be there but it can be managed. Stay positive , a positive mind is very powerful. Do not read anything else on line until you get a confirmed diagnosis and then you deal with it. We wish you well and hope you get some good news. Kind regards Christine

[Greenbus99 in reply to Greenbus99]

Please do seek some support and counselling for your emotional thoughts, please talk to your doctor straight away, you need help to deal with your suicidal thoughts. 🙏

[Runner999]

Oh dear! So sorry for all your troubles! But remember, although PV is a cancer of the bone marrow it is not malignant but an overproduction of certain blood cells. So it is not going to "attack" your body like leukaemia. If you calmly take some time to read information on Blood Cancer UK and MPN Voice websites, I am sure you will feel better about this and the panic will stop.

Then you will be able to think more clearly and get on with your calling in life- to be a doctor and to help others with diseases they need to understand and overcome.

Best wishes

[hunter5582]

Welcome to the forum. Glad you found your way here. You will find plenty of support and good information here.

Congratulations on getting into medical school. You should plan to continue an and become a doctor despite the challenges you are facing. there is a sliver lining in this very dark cloud you are in right now. Your own experiences with health challenges can make you a better physician. Something we hear all too often if a distinct lack of compassion from providers who have lost sight of the fact that being a good physician involves both the science of medicine and the art of healing. The best physicians are also compassionate gifted healers. You have good reasons in to understand this and live to that standard.

Your medical background will equip you to make better decision regardless of whether you have a Primary or Secondary PV. You are also in a much better position to understanding the underlying physiology that is driving the erythrocytosis. This will equip you to make better decisions. You should have your JAK2 mutation test back soon. As you know 95% of people with PV are JAK2 positive. If you are JAK2 + then you will want to find out what your JAK2 mutant allele burden is. Your doc may or may not recommend a bone marrow biopsy. You may also want to pursue a MPN Myeloid Panel to look at both the driver and non-driver mutations. The most critical thing at this point is to involve a MPN Specialist rather than a regular hematologist. Here is a list mpnforum.com/list-hem./ .

Know that there is plenty of hope even if you do have PV. People with PV statistically live near-normal life spans and treatment options are improving greatly. Besremi (ropegylated interferon), Jakafi/Jakavi (ruxolitininb), Pegasys (pegylated interferon) and other emerging treatments are changing outcomes for PV patients. PTG-300 (a hepcidin mimetic) is under FDA review here in the USA and should soon be available. Options for PV treatment really are looking better.

I was diagnosed with ET about 30 years ago. It "progressed" to PV about 7 years ago. Chances are that it was masked PV all along. Now at age 65 I am still alive and kicking. I have lead a rich life and continue to do so. I had a rewarding career as a mental health professional and continue to work part-time in the field in retirement. There have certainly been some challenges along the way. I also have Neurofibromatosis Type 1, which caused an adult pilocytic astrocytoma at age 63. Had that resected June 2019. The year before, I had a catheter ablation for paroxysmal atrial tachycardia. In the context of also having PV - it has been an interesting learning opportunity of late!

Please know that you can manage what you are facing. It can be challenging and there are dark times when you feel down. That is when you can reach out to friends, family, your faith community, professionals, and the people on this forum. You are not alone. There are plenty of people who understand and will be there to support you. All you have to do is continue to ask.

I will close with my list of coping strategies. I hope it helps.

1. Support from my family, friends, and faith community.

2. This forum (my friends and MPN Family)

3. Maintain your sense of humor and find ways to have fun no matter what.

4. Surround yourself with things that are positive and lift you up.

5. Mindfulness practices - I practice Qigong.

6. Say the Serenity Prayer every day and take it to heart!

7. Educate yourself about your condition(s). Knowledge is power.

8. Create a high-quality treatment team who you trust.

9. Advocate for yourself. Assertive patients receive higher quality care. Passive patients do not. Remember that you are in charge of your care. It is your goals, priorities and preferences that must drive your treatment. Empower yourself to deal with the MPN.

Please stay in touch an let us know how you are doing.