Blood cancers

Sorry lucky I had missed the point where you mentioned being diagnosed seven years ago and had thought you had only recently started the tablets. I can well understand your worry about your hair. Even DH is concerned and it’s not nearly as bad for men. I can also understand your thoughts about staying on your tablets. It’s a blessing if you can get something without too many side effects.
DH has had so many serious illnesses in the past, we kind of thought we were doing ok for a while and then this new blood disorder popped up out of nowhere. He wasn’t even feeling ill. As you say, it makes you wonder why your bone marrow suddenly goes wrong. Apart from feeling a bit tired DH does seem to be tolerating the tablets ok which is a bit of a relief.
I hope you keep well too.

Welcome Doodle to our exclusive club on GN. Yes, I’m on hydroxycarbamide as well. It’s taken seven years for my hair to thin to this level which is upsetting for me. I can’t see it improving. As far as I can see, it’s going to go on forever. I had a good talk to my oncology nurse on Thursday and she said she could change my chemo to see if it helped my hair but was reluctant (as I am) as I tolerate it so well. I have to keep saying I know it’s not as important as your health but it has a fundamental effect on your wellbeing. My nurse did acknowledge that it makes you feel ill when you don’t feel ill in yourself which I thought means she understood.

I didn’t know about the tiredness so I haven’t felt that or the aching legs, thank goodness. I did have very itchy skin and a lot of unexplained bruising before I was diagnosed. I’m 70 now so I do feel older but I’m fighting looking my age in every way. I have no idea whether it’s hereditary, I doubt it. My parents didn’t have it, I have never known anyone else who has it. My brothers don’t have it so I do think, why me? What on earth made my bone marrow suddenly go mad?

Sorry when talking about not being hereditary I was referring to DH’s diagnosis of PCV. I now realise you were referring to ET . Got my wires crossed (not uncommon ?)

Grandma1954, my heritage is also Jewish and Ashkenazi has been mentioned too. This is on my late father's side as his late BiL traced him to Jerusalem.

Thank you grandma and I wish you well too. Thank you for the suggestions re information. DH was in touch with Bloodwise and they sent him a number of very informative books which he is working his way through. As you say, a good source.
Yes we asked about it being hereditary too but were reassured that it was not.
Hope your GD is ok Ellan. Must be worrying when you are far away.

Ella van in the first question I asked on being diagnosed was is it hereditary. I was told no it was acquired at some point in my life. I’ve read about a study into familial ET in people of Ashkenazi Jewish heritage(which I am). I have lots of questions to ask my haematologist when I see him again in April!

Interestingly I'm awaiting my D's DNA test that she had done in Oz ( where she lives ) as she's doing our family tree.
What I'm getting at is that her daughter, my GD, has mild Thalassaemia, a blood condition found mainly in European or far-Eastern peoples. Whether the DNA will pick up on this I don't know though it should do as it would verify a genetic blood condition. Her mother could be a carrier but have no symptoms. Her own blood is A-neg.
GD was diagnosed a couple of years ago when she was having faints, then getting up as though nothing had happened. She is now early 20's. Worrying at the time when there's 10,000 miles between us.

Doodle I am also on Hydroxycarbamide since being diagnosed 30th Jan this year. I take 1000mg 6 days and 1500 mg on Sundays. My dosage changes according to my levels after my two weekly blood tests. I find I’m more tired than before starting the chemo but it’s one of the side effects as well as the condition. Had your husband checked out bloodwise or mpnvoice? They are both full of great information. This is one club no one wants to join but unfortunately we can’t leave!! I also joined some Facebook groups that are very helpful. I wish your husband well. I’m trying to raise awareness of this rare cancer and hopefully do some fundraising towards the research.

Thank you. You have done a lot of reading and investigations.

??? I can’t believe this thread. I have been sitting here reading it out to my DH. He was diagnosed about 2 months ago with polycythaemia vera and has the JAK2 mutation as well. He read somewhere it was very rare (about 2 in 100,000 diagnosed per year) and here you all are popping up on GN. Perhaps you should all start a GN club. ?
Interesting to read your posts. DH did have venesection a few times but is now on the chemo tablets Hydroxycarbamide one a day. Is that the same ones as you lucky. He is a bit concerned about his hair falling out (he doesn’t have much anyway) but I imagine it is much worse for you lucky. Is it possible that this might stabilise when you’ve been on the treatment a while and start growing back?
I still can’t believe there are people on GN with the same condition. Thank you all for posting. It’s so interesting to hear how others are coping.
lucky my DH complains of his legs being tired after starting the tablets and he doesn’t have as much energy as before. Is this something you are aware of?
Take care all and keep well.

Luckylegs show this to your unbelieving friend
www.voicesofmpn.com/mpn-blog/essential-thrombocythemia-facts.aspx

Thanks for that. In the meantime I’ve read the booklet, thank you Grandma1954 so I realised what it was. I’ve got the Jak2 as well and I was told originally that I made too many platelets first and later red blood cells as well but I have PRV so I’m confused now, I must have ET as well. Actually, I’ve been diagnosed for seven years now but after the first few weeks, haven’t investigated or read into it too much.

I’m now a bit fazed that the booklet says we’ve got a very rare illness which is life threatening as I haven’t really thought about it before stupidly. As I said my friend scoffs at me if I mention blood cancer as apparently I haven’t got “proper cancer”. Anyway, I’m tolerating the chemo very well, I feel fine, keeping myself well exercised, trying to drink more water etc etc so onwards and upwards, eh?

ET is Essential Thrombocythaemia which is a Myelopreliferative neoplasm (mpn). A rare, incurable blood cancer. Treatable to hopefully stabilise it from transforming into Myelofibrosis or Leukemia. There is also the added burden of having mutated genes, some of which are JAK2 (which I have - not curable) CALR or I think the other one I’ve read about is MPL. The JAK2 mutation means my platelets are permanently in the “on” position and make way too many, causing bloodclotting problems, strokes or heart attacks.

Luckylegs it’s not vain at all! It’s your hair and your feelings! I have side effects of my chemo where the soles of my feet either burn or feel like I’m walking on bubble wrap. I know this is a “good” cancer to have and things could be so much worse but this is now my life as it’s not curable.

I am being thick I think but what’s the ET in the original post?

I’ve always been quite vain about my hair, ridiculously thick, so thick it took forever to dry! It was my hairdresser who was astonished on one occasion how thin it had become and then, following a slight increase in my chemo, noticed how it had broke off so he cut it bluntly and just put dark streaks in when I used to have blonde and dark stripes. I can’t use heat much either. Anyway, the oncologist nurse has allowed me to drop one tablet a week as it was so upsetting me and getting me down. I’ll see when I go to the hairdresser on Thursday whether he thinks it’s improved a bit. I know it’s shallow, that cancer patients lose all of their hair but they complete their treatment and the hair grows back whereas I’m on a downward spiral as far as my hair goes.

EllanVannin I've had 3 ischemic strokes that I'm aware of as in lost the use of limbs etc and over 30 that I've had no awareness of but show up on mri's. None have affected my speech or awareness and haven't had any of the FAST symptoms at all. I've recovered the use of my limbs etc and no one would know from looking at me that I'd ever had a stroke but I have some lingering issues, I can't put weight on one leg I have to distribute my weight evenly or my legs tremble uncontrollably. I also trip if I hurry because my foot drops and stubs the ground, I can't hold a full cup yet without getting the shakes but apart from that I'm good. I've never had a Tia. I've always taken high doses of omega 3 and vitamin e which no doubt minimised the effect of the strokes and apparently my arteries are really good as in no plaque. I tend not to think about it because there's nothing I can do that's not already being done. I just need the all clear from the vascular consultant after the bleed so I can get the go ahead for my replacement knees which was supposed to have been done last september but put off by being admitted to hospital in august and taking a while to recover from it. They keep cancelling appointments so I'm still waiting.

Luckylegs, my hair used to be so thick with natural waves and curls, now it's slowly waving goodbye it's gone so thin. I've never tried putting a colour on it because I've got spots here and there on my scalp and don't want to set up an irritation.( could be the medication I don't know )

I wear my hair up in a clip at the moment as there's some length in it but I'm reluctant to get it cut in case it emphasises its thinness or I lose more. I used to be upset about it until I've seen those going through treatment for cancer and losing the lot. Now I just say que sera sera.

Bmbs not bombs ?

I’m still having tests. They tried twice in one day to do a bone marrow biopsy but failed as they were only getting blood! And it hurt so I’m really not looking forward to the next attempt on 26th of this month! Luckylegs check out mpnvoice.org if you haven’t already done so - this is a real cancer! My bombs were done in a cancer unit, not outpatients, and that really brought it home to me!

This is interesting because I felt as if I was the only one! I have polycythemia rubra vera which I was told is a cancer of the blood. I have a ‘friend’ who informed me that I haven’t really got a proper cancer as if I’m making it up!

I have to take an oral chemotherapy tablet a day plus an aspirin and be tested every eight weeks. If my count goes high, I would have to have a venesection which I dread as I’ve had two and felt it was extraordinarily violent. They’ve recently increased my tablets to keep my count down which has really had a noticeable difference on my hair, increased thinning and breaking and become resistant to colour. Has anyone else had this trouble?

No alcohol for me either, by choice that is not because you're not allowed some.
What sort of a stroke was it FlexibleFriend ? I ask because sometime towards the end of 2017 I'd had a TIA and didn't exactly know when just my balance indicated that something was wrong and also a later CT scan of course.

down not done.

The reason I self tested my Inr was because I had to maintain an Inr between 4 and 4.5 so tested every 2 days and maintained my target really well. I was also prescribed 81mg of aspirin a day alongside the warfarin as my last stroke happened with an Inr of 4 so the aspirin was added. Clearly that didn't work so well hence the life threatening bleed. That's done to my condition though not the warfarin. I was taking an average of 3mg each day. Never had an issue with warfarin as I don't drink and eat pretty much as I please without issue.

The warfarin is a marvellous well tried and tested drug of over 30 years now. It doesn't stop you from doing anything but certain items of food are limited such as greens where you're only supposed to eat a limited portion because it contains vitamin k which then acts on the warfarin. I was always used to good helpings of veg but not to worry I just watch my servings.

I've just carried on as normal though admit to being a bit paranoid at times about falling or cutting myself, but have learnt to live with it as best I can.
I've been taking it for 12 years with no ill-effects and an INR ( International Ratio--clotting time ) is taken every 2 months at the surgery. My INR has been good for a while at 2.5 which is acceptable in my case. I take 19mg's a week which has lessened over the months, good news on my part.
It's just the accidents side that bothers me as I get older, but I carry a booklet at all times just in case, but right now it's all good.

The final diagnosis in 2006 was Atrial Fibrillation and that's the reason I take warfarin.

MPNS was reclassified in 2008 as blood cancer because of the nature of the disease and the addition of neoplasms after its name of Myeloproliferative----meaning your body produces blood cells too quickly.