Does High symptom burden mean aggresive cancer?

[Xuzy]

Dear fellow warriors.I have posted here before, I'm following up because i got some help to meet a possible mpn specialist thanks to admin here.

You've all been incredibly kind, honest and resourceful to me. Thank you all very much

I just have this small doubt to people who lived with this for decades does no symptoms mean a less aggressive cancer and high symptom burden like itching and fatigue or sweats mean high aggressive cancer with increased risk of transforming?

I'm very concerned abt my symptoms and on the way to mpn specialist to ask these doubts too, but from a larger pool of patients here what is your opinion as you went through all these symptoms?

Did they get better with interferon treatment?

[hunter5582]

I do not think you will find a 1;1 correlation between symptom burden and risk of progression. It is true that symptom burden and progression both correlate with allele burden; however, this is not a 1:1 correlation either. I would suggest that having a higher symptom burden is by definition a more aggressive cancer even if there is not progression to MF or AML. There is a progression in the symptoms.

When I saw an uptick in symptom burden, we did recheck my allele burden and did a MPN Myeloid Panel to look for non-driver mutations that would put me a risk for progression. We found minimal progression in allele burden and only one non-driver mutation that we already knew was present. Had there been any indication of progression, we would have done a BMB to confirm status.

The MPN Specialist should be able to better answer your questions about risk of progression in a case-specific fashion. Since you are concerned about progression, you may also want to discuss making prevention of progression a primary treatment goal. This would be another thing to discuss with the MPN Specialist.

Hope the appointment goes well and you get answers to your questions.

[Xuzy in reply to hunter5582]

Thank you hunter. I initially had testing done for more aggressive mutations like IDH2 and ASXL1 Over the past couple months i feel the symptoms that were a little bother end up being a little more frequent. My regular hematologist said he won't be so urgent on bmb right now but yes now I'm getting a specialist opinion.

[Manouche]

Some studies have shown that PV patients who complained of pruritus had a longer life expectancy than those without pruritus. In other words, asymptomatic patients can sometimes have a more aggressive form of MPN compared to symptomatic patients.

[Xuzy in reply to Manouche]

Yes i found that study too, apparently it's because they get earlier access to treatment than asymptomatic ones.

[ainslie in reply to Xuzy]

sounds like a reasonable explanation, they will get diagnosed earlier perhaps and hence show longer lifespan

[bordeauxgirl in reply to Manouche]

Thanks for posting that piece of info on Pruritus Manouche, I have had PV for 8 years now , taking Hydroxy twice a day and because my Dermatologist just says 'well I don't know what this is' The itching , which now has left me with scarred legs has been horrendous over the year's. I was really glad to read your info. So now I am going to happily sing 'I'm going to live forever'. All my previous reading from my blood test's are just getting better as the years go on . Best wishes.

[ainslie in reply to Manouche]

I also heard about this study, seems a bit odd , I wonder if the more intensely one itches the longer the life, if this is the case, as a former Olympian itcher I may live to 200.😀

[Manouche in reply to ainslie]

According to ChatGPT:

« There is some evidence to suggest that patients with polycythemia vera who experience pruritus (itching) may have a better prognosis than those who do not experience pruritus. However, the relationship between pruritus and prognosis is not fully understood and more research is needed to confirm this association.Polycythemia vera (PV) is a rare blood disorder in which the bone marrow produces too many red blood cells, leading to thickening of the blood. Pruritus is a common symptom in PV, affecting up to 70% of patients. It is thought to be related to the release of histamine from the increased number of basophils in the blood.Some studies have suggested that patients with PV who experience pruritus may have a lower incidence of thrombotic events (blood clots) and a longer overall survival compared to those without pruritus. However, other studies have not found a significant association between pruritus and prognosis in PV.It is important to note that the presence of pruritus should not be used as the sole factor in determining prognosis or treatment decisions in patients with PV. Other factors such as age, disease stage, and comorbidities also need to be considered. It is recommended that patients with PV be monitored closely by their healthcare provider and receive appropriate treatment based on their individual needs ».