PV symptoms

[MaryELWoods]

My oncologist told me that my fatigue is "impossible " because all my labs are within normal limits. Is this true? If so, why do I battle this fatigue daily? What is your experience?

[Aime]

Hi Mary, without being rude on this forum, I would change your oncologist and tell him where to go politely! It has been proven so many times that there is often no correlation between blood counts and symptoms. Don’t worry, you are not alone but you are really feeling the fatigue no matter what he says!

Kindest regards Aime xx😺😺

[friendofpiglet]

Take a look at this:

patientpower.info/video/wha...

Many of us get the dreaded fatigue and I have also been told that because my counts were OK then it can't be the condition or the treatment. But it's very real to we sufferers.

Exercise really helps me, and socialising! Good for low moods too.

Andy

[JenngeetingR828 in reply to friendofpiglet]

I have the fatigue too and also get told my bone aches and fatigue are just not likely part of my condition at all because my platelets are only 620k. In fact my oncologist said... it’s just not likely. The Jak2 positive also really doesn’t mean anything. I could super sensitive but in general- he said - platelets don’t have nerves so no / the aches and fatigue not ET

[MaryELWoods]

Thanks for the link...very helpful! I do exercise regularly and eat healthy.

[fee13]

Same as above, most of us with MPN's suffer from fatigue even when our blood results are within the normal range. If your oncologist doesn't know this then he doesn't know anything about MPN's.

[Skye333]

Hi you don’t say which Mpn you have. I have watch and wait PMF and I have had awful symptoms like fatigue and terrible itching after a bath or shower. My oncologist has prescribed Ruxilitinib and I feel tons better.

Change your Oncologist

Janet x

[Timjonze]

My first haem said any symptoms I was experiencing wouldn’t be due to the MPN because my bloods were almost normal. New haem team totally understand that tiredness and itching can happen without my bloods being out of whack.

[Ebot]

Yup. There is not necessarily any correlation between blood counts and symptoms like fatigue. Change that oncologist and find yourself a haematologist that specialises in MPNs (or at least an open minded individual who recognises that they are not an MPN expert and is willing to research and learn).

[Bridie123]

No it's not true! Why do they do this to us!😬😭😩

[Wyebird]

I’m afraid I disagree. I have ET though so I’m open to discussion.

[friendofpiglet in reply to Wyebird]

Not quite sure what you're disagreeing with but, I have a friend with ET and on hydroxycarbamide who declares that she is totally asymptomatic.

So the fatigue thing is obviously not universal.

Andy

[Wyebird in reply to friendofpiglet]

I think the amount of fatigue people experience is an individual thing. I defiantly suffer with it if I’m unable to control my tiredness. Ie. Unexpected mishaps or events. I also know that fatigue hit me before diagnosis as I collapsed and ended up in A and E. Only then finding I had elevated platelets. Proof that fatigue is not in the mind.

[Aime]

Hi Mary, you will see from the other messages you are not alone. The things which help me with the fatigue are: plenty of fluids, healthy eating, foods like pasta, nuts, etc definitely help my energy levels, exercise (if my body allows) and giving in and taking a rest instead of being annoyed with myself for lack of energy. Sending you a load of E hugs and hope the support at least will make you feel better.

Kindest regards Aime xx😺😺😻😀

[mbr8076]

Hi MaryELWoods,

I have ET and fatigue. I just asked the PA @ my hematologist office this past Thursday if the fatigue is the condition or the Hydrea. My #’s are finally within normal range @ 400,000. You know she didn’t really answer me:/ Hope you rise above!

[Cazbolac]

I have experienced first hand how some symptoms can be disregarded by doctors when blood levels are good. Each person is different & should be listened to. We know our own bodies. When I had terrible itching I had to almost force my doctor to listen to me. I have changed my doctor.

[tsperl]

My Hematologist told me to see a psychiatrist when I told her about my fatigue. Instead, I changed my diet by eating six small meals throughout the day, including one before my morning run.

Hang in there!

[Inca]

Mary,I am so sorry that your haemo does not have any empathy.He should not be a medic of any sort. Like you I eat sensibly,albeit small meals,drink masses of water,exercise,try hard to be as normal as poss,but every day I hit a brick wall and I am fatigued.My Dr and Specialist both tell me that P V and Hydrea cause tiredness,and it is important to rest when necessary.Hope you find better care and feel better soon.You certainly are not alone.E hugs and lots of empathy from me .Keep strong as poss.Sally

[Peter18]

Dear Mary, I have seen a number of different haematologists at the same hospital. I have found them all very friendly but I sometimes get the impression that they feel obliged by their position to provide what sounds like an authoritative opinion in response to any questions I raise. I say this with this some confidence because different doctors have not always given the same answers to the same question! I think the posts on this forum should hearten you to have faith in your own judgement, taking into due account the doctors' opinions (of course) but not excluding other sources of information. Best wishes, Peter

[Richinspirit]

Hello Mary - have to say I agree with most of the posts here - get a new oncologist. My husbands' takes the view that it doesn't matter what the numbers say - it is about the patient feels ........ you may have the best blood stats possible but if you are tired - then you are tired and may need help.

[BloodZero]

Im no doctor but it seems to me (fatigue is my defining symptom) that the fatigue is due to the bone marrow working overtime and has nothing to do with the blood.

[ksos]

Hi Mary:

I'm joining the chorus here. I have ET, am on hydroxy and my numbers are in normal range because of it -- and still, the defining symptom I have is fatigue. I was so grateful to find this forum and discover I wasn't alone in this, because my doctor was telling me it was all in my head. After finding this site, I did more research on line (Stanford, Mayo Clinic, University of San Francisco Med Center, etc.) and repeatedly found fatigue listed as an ET symptom. As others have said, lots of water, exercise and rest have helped me.

The Mayo Clinic is conducting "The Fatigue Project", which is researching causes and treatments of fatigue in MPN. Link is: mpnforum.com/the-fatigue-pr... It lists some research that's been done about fatigue, and there is additional good research listed on this site. You might bring some of this to your doctor; I'm going to. And if he persists in telling me that I'm not feeling what I'm feeling, then I'm finding a new doctor.

Good luck -- keep reminding yourself that you're not alone.

Kim

[MaryELWoods]

Thank you.

[Indigo42916]

Cancer=fatigue. Your immune system is fighting hard to control the abnomal cell growth, cancer uses a lot of energy. Your immune system and cancer are in a long term battle. These are inflammatory diseases, and inflammation causes fatigue.

Another way too think about how it systemically affects us, is that the "tumor" bad blood is everywhere, unlike another type of cancer.

Suggest you consider a new provider, and I think the term fatigue isn't accurate, more like exhaustion.

Take good care, get plenty of rest and sleep.

[Angelinagaffer]

Ditto, I suffer with fatigue, and if we are all suffering fatigue and we all live around the world with the same condition, it has to be our mpns. After all we are the experts because we are living with mpn, the doctors learn from us. Ask your doctor why the fatigue amongst Mpn sufferers is universal, is he saying we are all psychiatric and living in our heads?? We all know what you are talking about Mary..xx Best wishes Angelinaxx

[Indigo42916 in reply to Angelinagaffer]

Yes, I think the "elephant in the room" is that some hematologist/oncologists don't consider it cancer.

Also everyone is different, I recently read women have a higher symptom burden. We are also more likely to be told it is anxiety, depression, etc.

Just have to be your own advocate, although it does get tiresome.

Take good care.