A bit confused

[fannetastic]

A bit of advice would be good. I was diagnosed Jack2 MPN unclassified in 2011. Up to now I have coped with the usual: itching, headaches, mainly fatigue, joint pain, ect, you all know the story. My last few appointments my blood levels have been rising to the point of they now think I should be on Hydroxy. I had my first venesection 4 weeks ago and am now on coated Asprin daily. They had a real problem getting blood for the venesection as my blood was very thick and sticky despite rehydrating like crazy for 3 days before. Firstly I have very cold icy feet to the point of them hurting then they can quickly turn very hot also painful. Is this normal ? I also feel sometimes I have an infection raging through my body, cold but flushed and sweaty, but no temp, and have to take to bed for 2 days, totally wiped out. Secondly I am struggling about this Hydroxy and whether there is an absolute need. At the last appointment before venesection my bloods were HG 158, HCT .47, WHITE CELL 13, NEUTROPHIL 9.3, PLATELET 258

Now I don't think they are all that bad but so very confused.

Any advice or just a thing I have to figure out myself. Female 69 as I know that can make a difference.

[Aime]

Hi, so sorry to hear you are so unwell. I am not a medic so can only offer a ton of sympathy and some e-hugs (lots of them). I have PV and have to keep my hct below .45. The other readings you have I really couldn't comment on, so sorry about that.

My advice is if you are feeling that bad and you don't seem to be getting answers to your questions, is to get another appointment very soon with your medic, armed with a list of questions you want the answers to. Don't be scared to insist you get answers or reasons why - if you are not satisfied contact Maz and ask for advice for a second opinion. Please don't leave things as they are, because worrying about your illness makes it worse. You will get lots of support from some wonderful people on this forum and you can ask Maz for a buddy to speak to.

Kindest regards and every sympathy and lots of e-hugs Aime xx😺😺

[fannetastic in reply to Aime]

Thanks Aime,

My next appointment is 13th of the month. I am seeing all different docs at the moment as my regular Consultant has taken retirement and as yet don't have a replacement. I live in Edinburgh and I think Maz does too. I have resisted a buddy as I feel sometimes that I would probably end up moaning all the time and we all have our own problems as well as this stupid illness.

I will take on board about a list and TRY and get answers, but at the moment different docs are telling me different things. Oh dear, confused.com.. lol.

I will also take all the e-hugs thrown my way gladly. Hubby is burying his head in the sand, family, well how can they understand if I don't myself. Friends, you look so well so how can it be blood cancer. Oh well hey ho, onwards and upwards to the right decision.

Hugs back.

Anne x

[Aime in reply to fannetastic]

It is difficult for family too as they have the illness too if that makes sense- just in a different way. My husband took a while before we could speak about my PV properly, what helped immensely was the forum which Maz organised for Inverness. My hubby attended the family group and that helped.xx. I think he didn't want to speak about because it made it real and he didn't want to show he was worried or upset cos that would upset me more.xx I live in Elgin and if there is another forum in Scotland it would be good to meet up.x

I would definitely push for answers or a second opinion if your not happy - it is your body and you are the one with the cancer. I feel better when I have more control or more of a say as to what is happening to me. Maz did give me the name of very good haems at Edinburgh so please ask her for advice. In the meantime tons more e-hugs and lots of sympathy and understand exactly how you are feeling.xx Aime xx😺😺

[Inca]

Hi Fannetastic,you must not worry,we all have these ghastly things occurring,they are frightening,worrying and confusing.At the moment my H C T is way over 50,every thing else is fine .Usually if it stays up too long my Hydrea is increased.Had a blood test today.I am in France ,my care is excellent,they have different ideas to U K....no one really panics when H C T goes over the magic 45. Yes ,I get very tired,the dreaded fatigue ,fuzzy heads being the worst.However I have learned to manage mostly and work as a sculptor,frustrating when I have to stop with utter weariness,Rest and exercise are very important,drinking as much water as possible at least 2 litres a day,more if poss.Don't get downhearted,loads of help here,we are in the same boat !Hope you find a good consultant soon,a good GP too who will monitor you closely.Very Best Wishes from a very hot France(heat no good for us either,I have to stay cool indoors!)Sally

[jane13]

Hiya,

well your bloods don't look too bad to me judging by mine (sure u know you can look the normal ranges up on the web if you don't have them)

but thought I would say don't be afraid of hydroxy: took it for years and no side effects

good luck

[francesb]

Hi

I agree with Jane13, don't be afraid of Hydroxy, I'm 68, Jak2Pos unclassified, maybe MPN or CMML, nobody knows, I've been on Hydroxy and aspirin for over two years with no problems at all. My dose has varied as my bloods go up and down. I take the Hydroxy at bed time and have no problems with it at all. Your bloods don't look at all bad to me but maybe you can check normal range via the Internet. I used to get awful burning feet at night but that has improved since being on Hydroxy. I am nearly 4 years since diagnosis and despite bone aches and awful tiredness at times, refuse to let this thing take over and spoil my life! Good luck, I hope you feel better soon and get a new and supportive consultant. Best wishes, Frances.

[jeanr]

I'm just adding my voice to the others and sending an e-hug also. I think you need to ask questions. I'm on hydroxy but my platelet counts were higher than yours are and were creeping up slowly and I was 71 . I didn't want to go on hydroxy but the answer was -your counts are going up, you will need to so why wait. So I went with that. I'm not experiencing any side effects. Go in with a list and a notepad. I hope you get some good answers.

[fannetastic]

Thanks for the input peeps. First of all Inca, how do you cope living in a hot country ? ( well I suppose anywhere is hotter than Scotland. ) being on Hyroxy. I do like my holidays to the sun and seems a bit pointless if you cant sit out in it.

Aime, I did take my hubs to the Edinburgh forum at the start of my dx but then as I was unclassified (( still am ) he wasn't convinced I should have been there as it was for " sick people ". Don't get me wrong he is very caring but just an Ostrich when it comes to sickness of any kind. I was to go to the last forum but ended in hospital with Pneumonia. Yes Maz and I would know the very Heams you are thinking about but she is no longer available hence the seeing different ones every time till they appoint a new consultant.

I think I have kind of come to a decision. As I don't think my bloodwork is that bad, when I go the 13th if they are the same I want to put off Hydroxy for the time being, if they are slightly raised, I will review in 6 weeks instead of 3 month. If they have jumped then its down the chemo road I go. Not with a hop skip and a jump I may add, more of a slow dragging of the heels. Fell more positive today thanks to all the good vibes. See it does work. X