Sibling just diagnosed with a different blood cancer

[SDJD]

Does anyone with an MPN have a sibling with the same or a different blood cancer? I have ET Jak 2 + and my brother has just been diagnosed with Non Hodgkin Lymphoma. Interesting! Now I’m wondering if either of my other 2 siblings have a blood cancer too.

[hunter5582]

That would be a yes to that question. I have a JAK2 positive PV. My brother was diagnosed with a high -grade Non-Hodgkin's B=Cell lymphoma. It was successfully treated. My daughter is also JAK2 positive and is currently diagnosed ET. My son has idiopathic erythrocytosis - no JAK2 present.

I think that there is no question that there is a genetic predisposition to MPNs and other blood cancers. This is something under investigation, including a possible link to lymphomas.

[SDJD in reply to hunter5582]

Thank you Hunter, that is so informative. I am quite fascinated! Will discuss with my other siblings and my sons. Hoping you and all your family are keeping well.

[cmc_ufl in reply to hunter5582]

Out of curiosity, did they do a BMB on your son? How did they differentiate idiopathic erythrocytosis from JAK2- PV?

[hunter5582 in reply to cmc_ufl]

They did not do a BMB. Tested for JAK2 with a blood test.

[cmc_ufl in reply to hunter5582]

How did they exclude JAK2-negative PV?

[hunter5582 in reply to cmc_ufl]

The doc who saw my son was the local hematologist who follows me but is not a MPN Specialist. My son was referred on to Johns Hopkins MPN Center where I am consulting for follow up. This has not happened yet and now my MPN Specialist has left. Follow-up is on my son's to-do list but we are sorting out who can follow up. We may end up at a different institution.

Our situation is a bit more complex than others might encounter. As you may recall, my daughter is also JAK2 positive. She is currently presenting at ET as I did at her age. All three of us are positive for Neurofibromatosis Type 1. This is a separate genetic disorder that brings its own issues. NF1 is also a non-driver mutation for MPNs. NF1 increases risk of MPN progression. It is also a gene mutation that increases risk of neoplasms. it is what caused the brain tumor that I had.

So my son's situation is that he currently presents as an unexplained erythrocytosis. He also has a NF1 related heart issue that caused him to have open-heart surgery at age 6 months. He now needs follow up surgery at age 40 to install an artificial pulmonic valve. The docs do not think this is the cause of his erythrocytosis. At this point, we just do not know what his situation is.

Hopefully we will get my son's diagnosis sorted out. I am wondering about the possibility of a noncanonical JAK2 mutation given that my daughter and I are both positive for the JAK2 haplotype and did acquire the JAK2v617f mutation. Perhaps he acquired a JAK2 mutation that is not currently on the list of known mutations. We simply do not know,

I will be seeing a new hematologist at Johns Hopkins in July. We will see how tht works out and who should do further evaluation for my son.

[Kari1961]

Not a sibling, but my Mum. I have PV and my mum had Non Hodgkin Lymphoma a number of years ago, thankfully she successfully recovered from it.

We're very similar in the makeup of our blood - I have 3 siblings, and I'm the only one who inherited my mums A Rhesus Negative blood.

[hunter5582 in reply to Kari1961]

In a similar vein, my brother was treated for a non-Hodgkin's B-Cell lymphoma a couple of years ago. Treatment was successful.

I do think these things are all related.

[S031251]

Hi SDJD I have PV and my sister has non Hodgkin’s lymphoma WM. My 3 brothers nothing - I’m 70 and the oldest. My sister not doing do well at the moment.

[SDJD in reply to S031251]

I’m sorry to hear that your sister’s not doing so well. My brother’s lymphoma has only just been diagnosed so awaiting more tests as to grading it, what type etc. Suzy x

[strangeland]

My mother was successfully treated for Hodgkin's lymphoma in her 70s. My brother was not as fortunate and died 16 years ago of multiple myeloma at the age of 45. I have 3 other siblings who have no related diagnosis.

[SDJD in reply to strangeland]

So sorry to hear about your brother. Suzy x

[Barbiebreath]

I have PV. My mother has Multiple Myloma.

[Sheena2020]

Yes. My sister was diagnosed with Myelofibrosis a few years before I was diagnosed with PV.

[jacquelineruth2000]

Hi yes my daughter was successfully treated for non Hodgkin’s lymphoma when she was younger. I have MF and my mother also had a blood condition ( not sure of the name) that caused mishaped red blood cells.

[Jazzyb50]

Not a sibling, I'm an only child but my father was diagnosed with lymphoma four years ago and successfully treated. I was diagnosed with PV in 2007.

[ggrana]

I have PV since 2013 and my husband was diagnosed with follicular lymphoma also in 2013.

[MWxxxx]

Wow. The first thing I asked when I found out I had PV was if it was hereditary? I was told absolutely not. Despite this I have continued to worry about my children, especially as my mum had died of non-hodgkins lymphoma 35 years ago, a week after she was diagnosed. There was just a horrible niggle that it was a bit coincidental. To see so many people with close relatives with lymphomas is quite frightening.

[SDJD in reply to MWxxxx]

I know, just from these replies it makes me think there is a definite link. I am wondering about my other siblings and sons now.Suzy x

[CalL1981 in reply to MWxxxx]

That was also the first question I asked after my diagnosis and I was also told in no uncertain terms there is no hereditary link. This thread really has made me think otherwise.

[hunter5582 in reply to MWxxxx]

The "not hereditary" answer is not strictly speaking accurate. While the JAK2 mutation is an acquired mutation, it is known that MPNs do cluster in families. The issue of Familial MPNs is an area of active research. There is also research into clusters of blood cancers in families, including lymphomas.

The short version for MPNs is that it is thought that the predisposition to acquiring the JAK2 mutation can be inherited. The JAK2 46/1 (GGCC ) MPN-predisposing haplotype is one thing currently under research. Here are some links if you are interested.

onlinelibrary.wiley.com/doi...

ncbi.nlm.nih.gov/pmc/articl...

onlinelibrary.wiley.com/doi....

ncbi.nlm.nih.gov/pmc/articl...

curetoday.com/view/relative...

This is an issue of concern for all of us. We do have a cluster in my own family (see above). We are participating on one of the Familial MPN Studies underway. Hopefully we all learn more in the future.

[SDJD in reply to hunter5582]

Thank you for your reply Hunter. I shall have a read. Suzy

[violetta115]

I am mpn-u (not quite PV) . My mother had MultipleMyeloma

[SDJD]

Thanks for all your replies everyone. Lymphoma has come up so many times,I am going to ask my haematologist re Lymphoma link and MPNs. Suzy x

[Superwoman]

My Daughter was diagnosed in 2020 with another rare cancer Parosteal Osteosarcoma and lost her thigh bone from hip to knee got the all clear then to find out it had gone to her lungs which it should not of done..Jean

[SDJD in reply to Superwoman]

So sorry to hear that Jean. 🤗x

[Devilgirl]

I have ET & my dad had splenic non-hodgkins lymphoma (he's been in remission a number of years now). My siblings have shown no signs.Like Kari1961 I am the only sibling to inherit my dad's A rhesus negative blood type.

[Anniepops112]

I have ET. My paternal uncle had PV.. My parental grandmother had hodgekins.

A paternal second cousin had some kind of MPN but I don’t know which one (PV I think), so not a blood relation to my grandmother.

I don’t know if they were JAK2+ (I am).

[Edgewalk]

I have PV & my younger brother has ET.

[Threelions]

This is all new news to me. I too was lead to believe it was not hereditary in any way.

[April-May]

My brother was diagnosed with lymphoplasmacytic lymphoma at the same time I was diagnosed with ET JAK2 6 months ago. Apparently there is no cure but it can be treated. At least we are able to commiserate (and laugh) with each other which actually is quite a relief. Good luck to you and your brother

[SDJD in reply to April-May]

Thanks. Early days for my brother, so will need more tests and decision on treatment. Suzy

[Hombre]

Hello, yes, I have ET, CALR positive and my sister has PV, JAK2 positive. As it happens, my wife, unrelated!, Is also PV, JAK2 positive, so MPNs are not as rare as some say.

[SDJD in reply to Hombre]

Wow that’s a coincidence with your wife and you both having and MPN!

[SDJD]

My mum’s half sister has a blood disorder- Beta Thalassemia Minor! Just to add to the mix!

[Cookiebaker]

I have ET with MPL mutation. My sister passed from primary myelofibrosis. Sure hope I don’t progress to pmf for a long time.

[SDJD in reply to Cookiebaker]

So sorry to hear about your sister. 🤗x

[SazzaC]

I was recently diagnosed with ET with Jak 2. Had severe symptoms for some time....doctor told me precovid probably age and dehydration!! My father died of multiple myeloma 13 years ago and my grandmother leukaemia.....maybe there is some genetic link? Hope my children or siblings do not follow suit. Was assured by consultant that it's just a mutant gene 🤔🤔🤔🤔.....

[SDJD in reply to SazzaC]

I’ve had so many replies about relatives with the same or different blood cancers, it does make you wonder about a genetic link!

[jmctrek]

My sister passed away from complications of leukemia when she was 37yo. I’m praying my child does not have this genetic predisposition. Dr. Fleischman at UCI has been collecting saliva and nail clipping samples for an ongoing MPN familial study. You may want to contact her if you would like to contribute to the study.

[SDJD]

Thank you. I’m so sorry to hear about your sister. 🤗x

[MAP44]

I have PV and my daughter ET.

[Airslie]

My younger brother got diagnosed with PV Jak 2 first then several years later I was diagnosed with ET jak2 which has now moved into PV.

[SDJD]

I’m still amazed by all the replies, so many and yet my brother’s haemo said there’s no link with lymphoma and ET and I think she specialises in lymphomas. I will also ask my haemo tomorrow when I have my routine appt. Thanks for your replies everyone. Suzy 🤗

[gilded]

I was diagnosed with CALT+ ET nine months ago. My older brother died from lymphoma (not sure which kind) 10 years ago.