Pv or et

Hi Peter you always seem to have an answer for me.  As I understand it you don't know it went from Pv to et from your body telling you.  I am getting a bmb on Tues.  had to cancel this Thurs due to snowstorm.  That will tell the tale, am I correct?  What dosage of Ruxolitnib are you on?  I'm taking 5 mg twice a day.  Started at 10 mg twice a day and couldn't handle it.  Do you have any peripheral neuropathy from Jakafi?  I'm starting to notice a prickly sensation in my left foot off & on that can travel to my calf. Brand new.  Noticed it Sunday.  Linda

Hello Linda,

Thanks for your message.  i would suspect that a bmb check should tell you your current situation.  I am on the same dosage now as you are with Ruxolitinib.  It was reduced from 10mg x 2 per day to 5mg x 2 daily.  The haematologist is monitoring the situation closely and I have to telephone the hospital consultant two weeks following the dosage change.  I have another appointment in 3 weeks time.

As far as peripheral neuropathy is concerned I have indeed suffered from this in both feet and for over two years I have been treated by my local surgery nurses and on several occasions have had the opportunity to discuss things with the vascular surgeons in the hospital.  It is much less of a problem at the moment but it has taken a lot of people a lot of their time to keep things under control.  I can't speak too highly of those who have treated me.  It is something that needs to be closely monitored.  The symptoms you describe could well be caused by this complaint, in my experience, and it is something you should investigate fully with your doctors.  It can be very uncomfortable so don't let it go unheeded.  My dosage was reduced to assist my immune system in healing infections I seem to collect from time to time.  I will know more after the next consultancy appointment.  In a way it is disappointing inasmuch as the Ruxolitinib (Jakavi) was steadying the blood results admirably so I will have to wait and see if any changes are afoot (pun not intended).  Well Linda I am a few years up the road than you are with PV etc so it will manifest itself with my experience.  Hope I have been of assistance.

Best regards.

Peter.

Hi Peter thanks again for responding.  Do you attribute the neuropathy to Pv?  And when you say treated for it, what is the treatment?  I called the dr yesterday, no call back.  Called again today, nurse called.  Asked me if area is red or swollen.  No, no.  It's a prickly tingly feeling in foot that does sometimes travel up my calf.  Kinda crampy too.  Not always more at night.  Is that how yours was? Your assistance is greatly appreciated as it seems my Drs suck and blow off everything.  So yea, I get by with a little help from my friends.  Linda

Hi Linda.  Thanks for your message.  I will stick to the facts that apply to me.

It is strongly suggested that Hydroxycarbamide in the high doses I needed upset my metabolism which relates to the neuropathy initially equated to PV, and which has remained with the Ruxolitinib treatment but now better controlled.  In the past few years I have needed attention from the hospital orthopaedic doctors to relieve the intense foot pain I suffered, diagnosed as neuropathic pain by several of the doctors I have seen.  I no longer suffer this pain in the affected foot but more recently my other foot seems now affected but to a much lesser extent.  I have a further hospital appointment on this matter in another 3 weeks.  The pain was always prevalent at any time but it did appear at night.  Painkilling drugs were needed to subdue the discomfort.

The symptoms you are describing were similar to those I received in the early days and which worsened as time went on.  I always mentioned my symptoms to the haematologists who have been excellent.  In more latter times my feet have often swelled but this is not particularly troublesome.

Another factor is the side effects of the drugs in relation to skin problems which have affected me and have been diagnosed as being affected by the drug treatment.  I have had regular visits to the hospital dermatologist after referral from haematology.  Again I have had fantastic support here too.  I should not go into the details of the treatment I have received as it is too public on a forum.  What I can say is that the current treatment has been very succesful in containing things generally and made life more comfortable.  This is why I have suggested you discuss all symptoms with your specialists.  As I have said often, I can trust my doctors implicitly and I owe them much gratitude.  It must be a learning curve for many of them too as they cannot see too many patients with these progressive rare diseases and have to act on what they find.

Best wishes.   Peter.

Hi Peter I am attributing this newly acquired neuropathy to the Jakafi.  I do believe it compromises our immune system and matabolisim.  It is only about 5 days that I noticed it.  And I am on Jakafi 5 months.  It's more of a tingly, prickly feeling in my left foot that can travel yo my calf and a little in the pinky side of my left hand.  Not always, definitely more at night.  I wish I had Drs like you.  Mine are dismissive and vague.  I've asked a few ovarian cancer ladies about it cause it's very prevalent in the chemo used for ovca.  Some take neuronton, others use acupuncture.  I will be going for my first bmb on Tuesday.  I am getting anesthesia so I'm not too worried.  More worried about the results.  Obama has destroyed our healthcare system.  Thank you again for answering my questions.  I truly appreciate it.  Linda

Hi again Linda.   You could well be right about your neuropathy and Jakavi.  But do not lose sight of the fact that it is a fairly new treatment and still being

analysed.  I must say that my problems seem to start with the maximum long time usage of Hydroxycarbamide which was stopped and I was then prescribed with Jakavi.  It is therefore difficult for me to assess any changes that may have occurred with the new drug.  Some of the original symptoms are still with me.  I have noted cramp conditions and pain in the legs and feet mostly during the night and am now keeping an eye on what will occur with the drug dosage reduction now in place for me.  All will be mentioned at my next appt.  Yes I do have some excellent medical services to call upon here but I remember many years ago, prior to NHS, when I was seriously neglected by our family Dr. who absolutely refused to accept what a young teenager was saying and failed to respond accordingly (said I had indigestion) but with the symptoms I had I knew it was wrong.  Years later I presented to my then doctor with the same symptoms and within several days was undergoing severe renal surgery.  I have never forgiven him.  Never visited him again either.  Although I must have had PV then it never showed up anywhere.  It is a different situation today.  Your upcoming test should sort things out for you one way or the other.  Whatever the result it can't change anything physically.  Should tell you exectly where you stand and what is the way ahead.  It doesn't take long.  The results will show how 

your blood is behaving and if any further treatment is called for.  Yes, I have heard from other of your countryfolk that the Obama healthcare was not up to scratch.  Sad really.  Any way, good luck on Tuesday Linda.  You will wonder why you worried once it is finished.          Peter.

Hi Peter I suppose you're right in Jakafi being quite new and not all the data is in.  I called the company who makes it, Incyte, and asked if one of the side effects were neuropathy and they said no.  I'm not scared of the bmb as much as I am of the results.  I will keep you posted as to what it was like for me and more specifically the results.  Always a pleasure hearing from you.  Linda

Hello Linda.  Interesting your fact about neuropathy but my personal view is that this problem is one I inherited from my years with Hydroxy.  It hasn't gone away.  Your bmb is simply one the drs.need Linda.  From this they can assess your situation more accurately, that's all.  Just keep smiling.

Peter.

Hi Peter I know the bmb is needed.  I feel it's long overdue.  How long have you had Pv?  I'm probably longer than 5 years because of course we're not dx as soon as we get it like a cold.  This disease has taken away a lot of my personality.  I'm much more reclusive than I used to be.  No one understands it so I gave up trying to explain it.  It's so complicated even I sometimes don't understand it. So my smiles are far & few between.  I think I'm still angry at it.  Linda

Hi Linda.  I agree with much you have to say.  I was officially diagnosed with PV nearly twenty years ago but did not need treatment until several years after this when I was referred to the hospital haematologist.  Since then it has all been action stations.  I know I was receiving the PV symptoms at least fifteen years prior to diagnosis but these seemed inconsequential then and there was no connection with PV at the time.  The problem with this disease is its rarity.  So few people contract it in comparison to other illnesses that the medical professionsals get little experience in dealing with it and learning about it.  This has improved considerably in more recent times with the research being conducted both in US and UK and the introduction of new treatments.  There is still some way to go I feel but progress is certainly being made.  Of course PV doesn't stand still as it will progress as time passes.  It affects some more quickly than others.  This causes patients much confusion but it is a complex picture all round.  All one can do is try to live with it I suppose.    Peter.

Hi Peter I'm wondering if I progressed to et.  My plates were going down slowly on Jakafi.  But my last visit they rose 44 pts.  That's when the dr said I don't think you have Pv, I think you have et.  This was @ the last 3 minutes of my visit.  I was blindsided.  When I asked why he said your platelets are high - 632 and your hemoglobin is low - 11.9, was 12.5 the previous visit.  That's when I said I want a bmb.  It's hard living with it for me.  I'm trying, but my progress is slow.  Good days, bad days. I'm off to the nail salon after cancelling twice cause of a headache or whatever.  It's kinda stopped life as I knew it.  I think that's why I'm angry.  Thank you for your response.  I always appreciate your input.  Linda

Hello Linda.  Quite frankly, I never knew I was anywhere near ET until I saw the haematologists report following my normal blood tests.  I never noticed any change in my well-being and the blood readings always being up and down really didn't indicate anything to me.   It was only the haematologist   report which was handed to me which showed the progression.  Otherwise I would not have realised a change had been effected.  It was difficult to comprehend that PV had moved on and it seemed very quick before it had moved further away.  I guess it is just a process that one goes through as a matter of course.  No warnings, no indication whatsoever until the relevant blood test results are produced.  I often wonder whether the progress can be reversed.  Probably unlikely I suspect.  It is similar to catching a cold which then reverts to influenza and then to perhaps pneumonia if you are unlucky.  I know, I've been there before believe it or not (but long ago).  Have a good day at the beauticians shop.   Peter.

Hi Peter did you ever have a blood clot from Pv or et?  It's my understanding that it starts in the calf with pain.  My left leg has felt crampy and weird yesterday & today.  I looked up dvt and there are other symptoms as well.  I don't have anything but the cramping and not continuously.  Just wondering. Thanks. Linda

Hi Linda,

I can't honestly say that I have ever suffered any blood clot from either cause, but calf pain well, just can get that from over exertion sometimes.  I would suspect from the various examinations and prodecures I have needed to undergo over the years that the answer is probably not.  I have been required to take Soluble Aspirin for thirty years or more now so maybe this is doing its intended job.  Sometimes I get the feeling that cramping is directly attributable to medication although I have no direct evidence to prove this.  Any cramping I now get is in feet and calves particularly after resting.  It soon passes after a little movement.  It is something I will ask the vascular consultant when I next visit him, he's pretty much on ball.  Will let you know the result in due course.  Best wishes.   Peter.

Hi Peter well that's good news to hear that you never had a blood clot.  I never had this cramping until taking Jakafi.  Mine is the same as you describe, it's while I'm laying down watching tv.  It does dissipate after moving or walking.  Well tomorrow's the bmb.  I can't wait.  Never thought I'd say that. I'm not scared at all only of the results.  I'll be staying at a friends house for the night, rather have somebody around nearby.  Please let me know what your vascular dr says when you see him.  Thank you, be well.  Linda

Hope you have a comfortable day tomorrow with your testing.  You are bound to be a bit nervous Linda but it will go fine.   Peter.

Hi Peter thanks for your words of support.  I'll let you know how it went.  Linda

Hi Peter well my friend, the deed is done.  No pain whatsoever!!,  however the anesthesia they used made me nauseous.  Versed & Fentanyl.  Small amount of blood on patch.  Fentanyl I believe is a morphine based drug and I have never done well on morphine.  Now, the real scary part- the results.  Thanks for your support.  Linda

Hello Linda.  All done and dusted I understand.  It is right that you went through the procedure as it is a good source of information for the medics.

Just a wait while the result is analysed but that should not take too long.  Forget it and let the result arrive when it is ready.  Sit back and relax. i am not sure what type of drug Versed is but Fentanyl I believe is an opioid very often used by a patch.  Whatever you were given seems to have settled you successfully so all smiles now ?  Best regards.      Peter.

Hi Peter well I did it! My next appt. with the hematologist is April 6.  That's when I'll know.  I'm glad it's over.  I don't know if I'm all that smiley but I'm relieved.  Thank you for your support.  Linda

Hi Linda.  I have seen your posting about healing the wound after a bmb but I do not see it as a problem.  Maybe a little bruising at the most but I can't say I have ever suffered in any way whatsoever.  Your experience seems to be relatively straightforward which is very much the norm.  After your next appointment you'll have Easter to relax with so look forward now to a good break with yet another hurdle behind you.  Have a good day.    Peter.

Hi Peter. It's healing very well.  I have a friend take a picture of it so I can see it.  No bruising, no pain.  I'm so happy it's over.  I don't see the dr till April 6 and I think I'll live a little.  Go out to dinner, shop all the things that have been on hold.  This has been messing with my head.  Seems like now that it's over, I'm calmer.  Thanks for your comments.  Linda

Hello Linda.

Thats all happy news.  Just do not break the bank and not too much sunshine as that is not recommended in our situation.  Live well.   Peter.

Hi Peter are you kidding?  We can't go in the sun?  Why?  Cause of the meds?  Last year and all the years prior with Pv I was always in the sun.  I belong to a pool club or go to the Jersey shore.  And I realized that the sun stopped the itch completely.  I've read that somewhere that the sun stops the itch and it's true.  None whatsoever. I can't not be in the sun.  I grew up at the beach in New Jersey.  I love being tan.  This sucks!  Linda

Hi Linda.

I somehow thought that you might come up with this query.  Yes, it is the medication that recommends this sunshine restriction.  It doesn't say 'no sun'

but do not overdo it.  Like Hydroxycarbamide there can be a relationship with skin cancer, you'll find mention in the manufacturers instructions issued with each prescription.   My view is that if you have a prevalence to skin problems then you should respect this advice.  Maybe your biologic make-up can handle strong sunshine now, but this is not so with others.  I spent quite a number of years full time in the Mediterranean area and still suffer the consequences now with these drugs.  It takes some handling I can assure you.  Am regularly visiting the hospital dermatologist.  Best wishes.

Peter.

Hi Peter I wasn't on any meds this past summer so I didn't think about it.  Now that I'm on Jakafi, I started to wonder. Does Jakafi and HU make us more vunerable to skin cancer?  Boy, the fun never stops, does it?  I'm depressed enough from all this and I do suffer from winter depression.  The sun always made me happier.  I'll read the insert again.  Can we sit in the sun with a sunblock?  Thanks for your response.  Linda

Seem to get cut off sometimes on this site.  I'd say just carry on what you have been doing but be aware of the side effects that Hydroxy and Jakavi can do over a long term where sun exposure is concerned.  As I see it, it might well be over a long term as in my case.  I was always OK in the sun and never experienced skin problems until long after I had returned to UK.  At about this period I had been diagnosed with PV and Hydroxy - co-incidence maybe ?  However, the medication literature surely can't be wrong can it ?  Best thing is to discuss things with your medics Linda.  Enjoy your sunshine but keep aware.   Peter.

Hi Peter sorry to hear about your skin problems.  I've been in the sun my whole life.  As I said I was raised in a beach town in New Jersey. I do use a sun block of at least 30 now.  This will be my first summer on meds.  I will ask my dr about it at my next visit.  I'll be miserable if I can't go in it. It's all I know.  I'd be happy with an hour with sun block, then under an umbrella.  Thanks for the advice.  Linda

Hello Linda.

I really can't see that you are doing much wrong particularly using sunblock too.   I had been as careful as one could be when overseas about the effect of the sun as it was always in contention in the UK.  If you are olive-skinned, as they say, you should be OK but as I see it, anyone with fair skin needs to control their sun exposure and use the recommended creams.  I did spend a lot of time outdoors took all the precautions I could but being at sea for long periods was extra exposed to reflected UV and sun rays which I were difficult to contain.  I am sure you will be OK doing what you have been always done.   Best wishes.   Peter.

Hi Peter my bone marrow test came back on the computer.  The way it's printing I can't read it.  It's like every few lines are missing.  I did see favoring et.  Since you have et, what's the difference between et and Pv?  And does the Jakafi work on et?  I'll have to wait for my appt on April 6.  I feel so sad.  I have my first mouth sore. They prescribed Magic Mouthwash which just seems to numb my whole mouth cause it has lidocaine in it.  Do you have or ever had mouth sores?  Thanks Linda

Hi Linda.

Perhaps you should ask for another result to be forwarded to you.  A bit pointless if you cannot read the original.  I have progressed from PV to ET and thence to MF where I now stand.  As I said previously it all happened without me noticing.  I cannot say that there is a lot of difference except that the blood counts should show any changes.  I think you will find that ET can be diagnosed by a higher platelet count with a leaning towards haemorrrhaging and thrombosis.  As I understand it, Ruxolitinib (Jakavi) is suitable for treating PV through ET to MF.  All these relate to the blood disorder that underlies the diseases.  Jakavi is known to reduce the risk of serious complications in blood and vascular disorders.  Always consult your specialist if you suspect  anything unusual.  Yes, I have suffered from mouth ulcers but these are controlled by the Difflam mouth wash I am prescribed.  I am not particularly troubled by the mouth ulcers.  Have a good day. 

Peter.

Hi Linda.

My impression is that Jakavi or Hydroxy can exacerbate skin conditions if you are susceptible to these problems.  If they do cause any difficulties I suspect it is over the long term usage such as affected me.  The skin conditions should be treated at the earliest opportunity though by a dermatologist.  Prevention is certainly better than cure.  It can be a contentious subject.

Peter.

Hi Peter I got a better copy and it's really hard to read.  Too many medical terms I cant seem to decipher.  I can read no evidence of acute leukemia, metastatic carcinoma, plasma cell neoplasm or lymphoma.  It seems to suggest et.  Miserable day.  Rainy, cold, grey.  Plus this mouth sore is SORE!  Hard to eat.  I've lost 3 lbs because of it.  I usually weigh about 125 & now 122.  I'm 5'4 and don't wanna get too thin.  Thanks for all your information.  You are truly appreciated.  Have you ever met anyone with Pv or et?  I never have.  I think that's like a needle in a haystack.  Lol.  Linda

Hello Linda,

Never met anyone with either PV. ET of MF so far.  When I asked about other patients at the hospital undergoing treatment, I got the same result.  I was told I was the only one on their books but there were other patients with MPN being treated.  Seems like you will need to show the results to a doctor who can decipher for you.  From what you have explained your outlook seems acceptable in the circumstances.  With the mouth ulcer treatment I use I need to use it every couple of hours to be effectiuve.  Currently I am clear.  Have you tried an anti-bacteria mouthwash Linda, at the same time as the other one?  It was recommended to me by the haematologist some time ago.  It might work for you.   The ulcers are probably drug related.  Best wishes.    Peter.

Hi Peter I think I have et.  Maybe I started with Pv and its morphed to et or it was always et but the first bozo dr dx it wrong.  I will know all I need to know on April 6 when I see the dr.  Is it possible to start at et or do you get Pv first and then it morphs to et like you?  I will use an antibacterial mouthwash first, then the other stuff.  Thanks for the advice.  Omg it's too much!  Thank you once again for your input.  You're pretty spot on.  Linda

Hi Peter so you never met anyone that have what we have.  I haven't but I'd love to.  I just got an email from an MPN group that are having a lecture about MPNs.  It's not far from my house and I aim to be there.  And I'll meet people just like me.  You can ask questions too.  Used to get excited about a concert and now I'm excited about an MPN lecture.  How sad!  This really does take your life away as I knew it.  Linda

Hi Linda,

I suppose it is quite possible to acquire ET without first having PV but in the normal run of things It is a progression.  Some patients never move on from PV.  Just goes to show how different we all are. Incidentally, the oral rinse that I use for mouth ulcers is Benzydamine Hydrochloride solution.  Expect it is available in US for you to try if needed.  Rinse or gargle.  Hope your MPN Group will cater for your requirements.  Fortunate to be so accessible.  Let us hope it is successful for you.  As for being accurate with information I try to stick to the facts based on my experiences.  It would be very irresponsible to do otherwise for most people seek honest advice on these forums and to mislead them on such a serious matter as their health would be unacceptable.  I try to leave the technical details for the professionals to answer.  PV etc. can be real conundrum at times and so easy to speculate on.  That cures nothing.  Good luck with your meet Linda.

Peter.

Hi Peter the lecture I'm going to isn't until May 11.  It's 2 hours.  So I have a bit of a wait.  I appreciate your answers cause you do stick to the facts as you know them.  I'll call the pharmacy to see if the mouthwash you mentioned is available before asking the dr.  The magic mouthwash they gave me sucks.  All it does is numb your whole mouth cause it has lidocaine in it.  Doesn't do anything for healing.  Thank you for all your help.  Linda

Hi Linda.

Thanks again for your reply and the information.  The mouthwash I receive is normally by prescription but it may be available over-the-counter here. It could be the same in U.S. but you'll know more about that.  The ulcers are generally medication related which is why the haematologist prescribed the mouthwash to me.  It will be interesting to hear how your lecture on MPN's pans out Linda.  I believe our hospital group runs a charity on MPN's with meetings for patients available too but it is a little too far to access for me I am afraid.  I do find the hospital services excellent though.       Peter.

Hi Peter I checked on your mouthwash and it's known as Difflam.  I called my pharmacist and they said it's not available here in the US but in the UK.  So there goes that.  I wish you could send me a bottle but of course that's impossible.  My sore is starting to heal, I read it could take 10 days.  I got a paste called or orabase which has a steroid in it which is helping.  I got it from my dentist.  It works much better.  It's always something with this, isn't it.  Thanks for your help.  Linda

Hello Linda,

Yes it is Difflam that I have been using.   Pity you can't get it because it is easy to use and effective.  Never mind, you seem to have solved the problem.  Have a good week-end .  Do not spend too much now you have time on your hands.      Peter.

Hi Peter I think the Orabase I got is working.  Have a good week-end also.  I don't plan on going anywhere so nowhere to spend anything.  Linda