Does anyone else have another blood cancer as well as an MPN?

[Rachelthepotter]

Hi. I’m now nearly two years post diagnosis with MF, and I also have CLL. Chronic lymph.. leukemia ( can never remember, spell or pronounce the L in the middle) CLL to its friends. That means that I get excluded from clinical trials, which is a big downside. I wondered how many other people who use this forum had another blood cancer as well.

A couple of posts rcently have mentioned other conditions alongside MPNs: anyone else got CLL?

[francesb]

Hi Rachel, yes I'm weird, I am jak2 positive plus two TET2 mutations which indicates CMML plus MPN but they're still investigating. It makes finding a treatment to work very difficult. I'm currently on Pegasys plus Hydroxycarbamide but my white count remains far too high and spleen huge. Platelets 460 at the moment ( have been 2,400) and haemoglobin low. I hope you find a treatment that works for you. Best wishes, Frances

[Rachelthepotter in reply to francesb]

Thanks, Frances. It does restict treatment options, doesn’t it. Having my original super specialist highly respected MPN doctor saying , when I asked how my CLL was doing, that she she was only concerned with my MF worried me. But you seem to have found a team who can handle both.

Is ruxolitinib an option for you? Its working quite well for me.

[francesb in reply to Rachelthepotter]

Hi Rachel, we tried Rux but it didn't touch my counts, they kept rising and I was coming out in masses of black bruises (forget the technical term) so we stopped it and went back to Pegasys plus Hydroxy. Glad it's working for you.

[Paul123456 in reply to francesb]

Frances

Can you please expand re ‘two TET2 mutations which indicates CMML’?

Thanks Paul

[francesb in reply to Paul123456]

Hi Paul, that's all I know, genetic testing showed I have two TET2 mutations plus Jak2 pos and I was told this ( TET2) is most indicative of CMML although I don't have other symptoms it's not clear what I do have and they've not come across such a muddle before. More tests are being done at Guys to try and find effective treatment. Best wishes, Frances

[mhos61]

I think Andrew Schorr (Patient Power) has both MF and CLL. I’m sure I’ve heard him discuss this in one of his many videos. Maybe it’s more common than we think!

[Rachelthepotter in reply to mhos61]

Yes, he does, and we’ve been in contact. Which made me wonder how many of us there were.

[nanmc]

Hi I have PV and Cll diagnosed last year and on Hydroxy. for the PV and told the Cll is watch and wait. I have found it useful to dip into the Cll support association forum, they have a useful list of what we can do to help ourselves.

[Rachelthepotter in reply to nanmc]

Thank you: I’ll have a look on their website. I don’t know what the genomic markers for CLL are - maybe there aren’t any yet - but it’d be interesting to find out more.

Rachel

[Stephen399b]

I have ET Jak2+ and Systemic Mastocytosis as well (which I gather is rare). This isn't strictly a cancer I don't think(?), but means I have to take additional meds and keep a watch on what I eat and stress levels. Over production od mast cells has lead to me passing out on one occassion.

Tiredeness, itchy patches are my main issues, but I still work full time and generally get on pretty well.

Best wishes

Stephen

[Rachelthepotter in reply to Stephen399b]

Thanks, Stephen. The mast cell overactivity is a nuisance for me too. I take regular antihistamines alonside the ruxolitinib, which seems to be OK.

All the best

Rachel

[Stephen399b]

Yes, I take Fexofenadine (H1) and Ranitadine (H2), as well as HU and asprin, plus iron as I am anaemic (rattle like maracas after taking it all!).

At least my hay fever is under control in the spring!

Stephen

[Merry6]

Hi Rachel, I have ET Jak2 and not another blood cancer as such, but MGUS (Monoclonal Gammopathy of Undetermined Significance) which is an abnormal protein produced in the bone marrow which can develop over time to Multiple Myeloma or other lymphoid disorders. It sort of sits in the background and is monitored yearly through a blood test as it is usually slow to progress (10 to 20 years) but certainly increases my risk of other cancers. Merry x

[Rachelthepotter in reply to Merry6]

Thanks , Merry.

[skipperL]

I don’t seem to have an additional blood cancer, but my original diagnosis was an MPN crossover. Now I have been told that I have Myelodisplasia (MDS). The Epo injections I was put on seem to have stopped working, so I have been told that I will be transfusion dependent in the future. My HB has plunged to 80. I am worried about iron overload from the transfusions ( which haven’t made me feel that much better). - has anyone out there any experience of my problems? I am being transferred to a Central London hospital after Christmas, as my local hospital will no longer be doing oncological haemotology - perhaps this wiill be good as they are a centre of excellence and someone new may look at my problems differently. All the best

Skipper L

[Skeeter1956 in reply to skipperL]

Hi SkipperL just wanted to send my best wishes . Hopefully the team at the London hosp will have more experience in managing MDS . My wife was diagnosed with hypocellular MDS earlier this year . Hadn't heard of it until then .

All the best Skeeter

[skipperL]

Thank you Skeeter - I hope that I will find an MDS expert. I wish your wife well - am now going to google hypocellular MDS!

[crapaud]

Hi Rachel,

Is was diagnosed with MDS + MF (triple neg, jak2 neg, philidelphia neg) in 2014. Basically had no reds, no whites and no platelets. Considered to have a high risk of transformation to AML so underwent a SCT in 2015. Blood is back to normal now.

Take care

Gary

[Rachelthepotter in reply to crapaud]

Hi Gary. There do seem to be a few of us with multiple blood cancers. Your sct seems to have sorted it all, at least as far as blood picture goes. I hope that your l8fe quality is as good as the bloods. Or at least something worth having.

All the best. 4achel