New specialist appointment

Thank you, yes I think it will be a good idea o have one too even though like you say it's scary but it's the only way for sure. X

Hi Julia having the bone marrow aspiration and a complete blood test is needed in order to rule out or confirm Polycythemia. I had a year of testing before a final diagnoses. You name it, I had it. Two Doctors said "this is a mystery. Finally my very last test was a lung function test including a spirometry test. My red blood cells were high. I was finally diagnosed with secondary Polycythemia being COPD. Now I know what I am dealing with. Been referred to a Respirologist specialist. Finally a treatment for me, 

Hang in there soon you will know.

Ellen

Hi Julia just read Peter and Ellen's responses.  Seems to be unanimous that you need a bmb.  Peter was very informative to me when I was getting one.  I opted for anesthesia and was shocked.  No pain at all.  Not during or after.  I wouldnot hesitate to get another one if ever needed.  It's really fear of the unknown.  You'll be glad you did it once it's over.  Zap

Seems like you are in good spirits.  Just to advise you that the haematologist continued with the lower dosage of Ruxolitinib and will reassess in 4 weeks.  The results were virtually the same as the previous appointment. So - status quo for me.  All this despite a very unwelcome cold I collected somewhere down the line.  Doctor said to beware of children and animals as both can have an effect on you.  The cold was not helpful but is vastly improved now.  My formost consideration at the moment is the neuropathy symptoms in my feet etc.  Fortunately it seems controllable and does not interfere with my sleeping pattern.  The vascular appointment has been delayed a few weeks so I have no further information on this until later.  Hope you stay well over the holiday.   Peter.

Hi Peter my spirit seems to have improved when the sun started to shine. I difinitely suffer from winter depression.  I also went to the Drs Thurs. My platelets dropped 33 pts.  So pretty much status quo for me to. (For now)!  I don't go near kids or pets so no problem there.  Hope you get an answer about your neuropathy.  I wish these Drs would stop changing and delaying appts.  It's so stressful.  Hope you have a good holiday.  Please let me know when you know what the dr says.  Stay well. Linda

Hi Peter hope you're feeling well.  I don't think you saw the dr yet.  It was 80 degrees today.  Don't know Celsius. It was hot and I layed out in the sun for about 45 min.  Got a little color and feel pretty good.  This is my first summer on Jakafi and I didn't have any reaction to the sun.  It definitely helps my mood.  I've changed Drs also.  Will be seeing him May.  Not happy with the current one.  If I don't like the new one, I'm going to New York.  I'm only 12 miles away.  Be well. Linda

Hello Linda.

Yes, am keeping on top of things generally here.   I think the sunshine does give one a lift but must not overdo it.  With all this climate speculation it seems the sun is much stronger than we have all been used to and can have some very undesirable effects.  Pity it doesn't effect a cure for PV etc.  My next haematology appt. will reassess the Ruxolitinib usage for me.  I will be quite content to remain on the lower dosage providing the blood tests remain much the same.  That will not be for a few weeks now but also have a further appt with vascular surgeon who will check the bone/nerve pain situation affecting my feet etc.  He has been very interested in the PV (MPN) connection and his views will be interesting I am sure.  What made you change to a new doctor again Linda or is this the change you anticipated earlier?  Hope you find this more suitable for your requirements.  As a matter of interest to you I have a good friend living in Baltimore (recently moved from Annapolis).  We have been asked to visit several times but with the way my PV has moved have been a little reticent to undertake such a journey by air.  If things settle more maybe we can make a visit.  Time will tell.   I take note that NY probably has some worthwhile medics Linda.  Enjoy your holiday and the sunshine.  I don't think you will have any difficulties with the Jakavi and the sun as you seem to be unaffected so far.   Not too much chocolate though, you might need to diet afterwards!!  Keep fit and happy.

Peter.

Hi Peter yea I know I have to be careful with the sun.  Glad you're gonna see the vascular dr.  He sounds like he's up on the Pv as well.  I'd be interested in his findings.  Please let me know if you'll be continuing on the Jakafi dosage.  Im changing Drs cause where I go there's 4 I the group.  1 left, 1 is pregnant and I feel nobody's minding the store.  I want to see 1 dr only who knows me, not different ones. I'm afraid to fly cause of the blood clot factor.  My son lives in Florida and I won't go there.  Maybe you could go Baltimore, it's very nice.   See how you feel.  Enjoy the holiday also.  I'm not crazy about chocolate so I'll be ok. Take care. Linda

Hi Linda.  I think you are absolutely right when it comes to the question of continuity in visiting the same doctor, particularly where a serious disorder such as PV-MF is concerned.  With rare diseases it is much preferable to speak to the same medic each time as they will be au fait with your circumstances and also the disorder and the treatments available.  It saves repeating oneself each time you attend.  I will let you know of anything interesting that arises from my next appointments with the hospital specialists.  I will remain on the low dosage until then.  I understand that air travel can be undertaken providing you take the necessary advice and care for such a journey.  As for Easter, well how that has changed over the years.  All bunny rabbits and chocolate eggs now - don't know how that fits in.  Have a good day.   Peter.  

Hi Linda.

You wished to know if I would be continuing with the lower dose of Ruxolitinib and the answer is "Yes".  It seems my blood has remained much the same as previously and there is absolutely no need (unless things change) for me to revert to the higher dosage.  The Haematologist is extremely pleased with the results and expects things to at least stay the same, or maybe improve a little.  I acknowledged that it is still early days as far as this treatment is concerned and we all look forward to pleasing results in the future.  For sure.the blood results are passed to the research team for their analysis of the drug and its overall capacity to successfully treat MF to and other MPN disorders.  A satisfying conclusion I feel.

Further, I can say I now have another appointment re the vascular specialist but this will not happen until 3 weeks time.  A date is fixed.  Feeling pretty fine with no obvious effects from the treatment.  Hope you can take comfort

from this too.

Peter. 

Hi Peter thanks for filling me in on your progress.  I'm pleased to hear all is going well with you.  I don't remember what your dosage was on Jakafi.  I'm on 5 mg twice a day.  I will be going to my dr on May 9th.  So I'll see what's happening with me.  I am also going to a seminar hosted by Incyte, the company who makes Jakafi on May 11.  I'm pretty excited about that.  They're going to have a nurse & dr there and a question and answer portion. II hope to meet some people who have Pv as I never have met 1 person. It's at a Marriot hotel not too far from where I live. I'll keep you posted as to how that went.  Hope you get good results from your vascular surgeon as well.  Thanks for the update.  Linda

Thanks for your reply.  My dosage is the same as yours now.   Seems as if you have everything arranged locally.  Hope it all turns out successfully.  You will, I am sure, have plenty of facts to utilise in your discussions.  There are really not too many people around who suffer from PV and its associated ailments.  Still a very rare and serious illness.  Wish you well.

Peter.

Hi Peter I know it's a rare disease and that's why I want to meet someone in person who has it.  That's part of my motive for going to this event.  I'm starting to think there are more of us than we know.  I'm so excited to go.  10 years ago I'd be excited going to a Stones or Guns & Roses concert.  Lol my how life changes.  We sure get hit with some curve balls.  All the best to you.  Linda

Hi Linda.

Yes you are right about the inability to meet other suffers in person so perhaps you'll gain a very useful insight into our problems during your meetings.  I am advised that probably because of the longer life span  of people that more persons are now being diagnosed, but because of this it is occurring at a later stage in their lives when formerly it would not happen due to the shorter life expectancy that existed previously.  It is not so much that more people are being discovered with PV etc but that it isn't showing up until later when the diagnosis occurs as their age increases.  Another possibility is that with bigger populations around more cases will be revealed.     Law of averages I suppose.  Good to see that you have a more active life.  Keep well.

Peter.

Hi Peter your theory is probably right about there seeming to be more people with Pv, et.  I'm just hoping to get to mingle with some of them and ask questions like I do with you.  Yea, I came out of my shell.  I know it's winter depression or SAD as it's known.  As soon as it gets warmer and the sun starts shining I become a different person.  My son lives in Florida for about 10 years.  He's a pharmacist and loves it.  When he visits NJ, he hates it.  He has the right idea.  He's a very happy guy!  Maybe he took after his father, who died when he was 5.  However, he's a lot like him, much more than me.  Be well and I'll let you know what the dr says after my appt on May 9. Linda

Hi Peter just saw my new and improved MPN dr today.  I definitely have et.  He said all my counts are normal except for my platelets.  My platelets went up 100 pts to 699 from 6 wks ago.  New doc said I'm not on the right dose of Jakafi.  So, tonight I'll take 10 mg.  5 mg in the morning or 15 mg a day.  He said with the right dosage, I could achieve 450-500 platelet count.  He said if I have to have an MPN, et is better than Pv.  Also, with et you could eat meat if you so desire and foods containing iron.  Not with Pv.  And I'm going on vitamin D. So, a very informative day.  Thursday I'll be going to the MPN forum discussion.  Incyte, the company who makes Jakafi is the sponsor.  I'll be able to ask questions.  I'll let you know how it was.  Hope this msg finds you doing well.  Linda

Hi Linda.

Good to find you smiling again.  Your information was very interesting.  At the end of this month I have my next haematology appt. so will see what advice I arrive at here.  As for the diet situation, I have always eaten just what I like (in modest quantities) and never taken added vitamins.  In fact I have been encouraged to eat and live normally without going over the top and have adhered to this advice.  It would not surprise me if my dosage was increased next time round but I will not pre-empt the situation.  I still feel the same physically.  I just wonder whether your treatment has successfully held back any further advance in your diagnosis, bearing in mind what you have indicated in your message.  It is certainly some good news for you.  My platelet count is fairly static at this time which augurs well for me.  Seems like your new doctor is well advised on MPN"s doesn't it?.  Anyway hope you have an interesting time at the meetings on Thursday.  I will look forward to your comments in due course.  Let us hope the good news continues Linda.

Best wishes.

Peter.

Hi Peter hope you his msg finds you in good health.  I'm writing to tell you I never went to the meeting I was so excited about.  I decided I should eat before I left and ate some chicken which was questionable in my mind as to how long I had it.  Consequently, an hour and a half before I had to leave I started to get dizzy, then sweaty and finally threw up.  I GOT FOOD POiSONING!!  I can't believe it still.  Does the black cloud ever lift?  Linda

Hi Linda,

Well, it never rains but it pours doesn't it?  Very dispiriting to get so close, yet so far.  There is nothing you could foresee so I hope you will get another meeting in due course.  Do hope you have recovered from the food poisoning.  Chicken needs particular attention with cooking and there are many instances of people being affected by its choice as a food.  At least it was nothing to do with PV-ET so that is one advantage Linda.  Thank you Linda, I remain very well and stay active.  I have a Dermatology appointment 

next week (Re Skin problems suffered) and a week later will visit the vascular clinic concerning the circulation difficulties.  It has been a long haul but I suspect there is further yet to go.  This PV can have long tentacles I feel but the overall situation seems more positive now.  My next Haematology visit is the last Tuesday in the month.  So, it is all happening here.  Have a family wedding to attend in October next so am keeping my fingers crossed that I will remain fit enough to attend.  Probably we will drive to the ceremony, stop overnight before returning.  There should be no problem with this.  Still some time ahead yet.  Am very sorry things did not go to plan for you as I expected some interesting feedback.  Anyway, good luck and keep well.  Many thanks for your news.

Peter.