Pv odds

Hi Peter I know the gout is horrific, I used to be a barmaid in a local bar 100 yrs ago and many a times a local customer would come in on crutches and tell me they have the gout and order water. They would say the touch of the sheet on their toe was unbearable.  My father never had it nor have I.  That festival sounds like one big miserable headache.  How nice you and your wife used to sail.  It sounds lovely.  I've been on boats, I guess racing boats don't really know, can't remember and I think I took a sailing boat cruise in Aruba to see the sites.  Enjoy the music lol.  Be well. Linda

Hi Linda,

You are right about gout.  I think Allopurinol has brought many an hour of peace to its sufferers.  Cause is the build up of uric acid in blood.  This is a factor in PV I believe but not to the same extent.  Weather here has changed with thunderstorms being forecast.  What price a muddy Glastonbury now.  I feel these type of events should be confined to offshore islands where  they don't interfere with anybody.  Living on top of this venue must be horrendous as it goes on for several days.  Yes Linda, my wife and I loved sailing, the peace, tranquility and variety of life was wonderful.  We did go off in our boat cruising the Mediterranean extensively for ten years or so.  Met some very nice people from all over doing the same thing.  Mind you, you need to know just what you are doing. Will enjoy the "music" when it is all over and the crowds have departed.  

Peter.

Just to let you know that following my visit to haematologist I came away with a very good prognosis.  Blood tests normal.  No problem with spleen, weight fine and to remain on the low dosage of Ruxolitinib.  Next visit in four weeks time.

Weather here changed to overcast and rain in the offing, just as Wimbledon approaches.  Some things never change.  Like you I am not a tennis fan  but will happily watch a great moment.  With the rain forecast I suspect the sun-tan will turn to rust.  Trust all is well in NJ for you and the sun still shining.

Good wishes.

Peter.

Hi Peter so glad to hear everything is well.  I have not been feeling well for 4 days.  Started feeling nauseated on Sat. Same on Sunday.  Also a lot of belching. The only thing I did different was take the Jakafi 5 mg in morning, 10 mg at night.  Was taking it 3 times a day prior to going to see my hematologist.  I have had quite a few ulcers in the past caused by the h-pylori bacteria.  I'm starting to think I hav another one.  They do reoccur.  So going to see the gastro dr in a few weeks.  I hope it's not the Jakafi.  I've been on 15 mg for over 1 1/2 months.  Prior to that, been on 5 mg. 2 x day.  So once again no sun for me.  I was perfectly fine on Friday and woke up Sat nauseous. This sucks!  Hope it gets better.  Take care Linda

Hi Linda,

Sorry to learn that you are feeling unwell.  Hope things get better soon.  I have done a quick check on the side-effects of Jakavi and none seem to coincide with those you have indicated.   From your explanations I would tend to agree with you when you suggest a gastro-intestinal connection.  Seems like an anti-biotic for your needs I"d guess.  In more recent times I have been given anti-biotics to treat infections I have somehow collected but nothing really one would connect with Jakavi use.  Your dosage of this is quite low really and should not pose any difficulties as it is much more amenable to use than was the Hydroxy.  I am surprised that you will not see the gastro-doctor for several weeks though as these type of infections can be very uncomfortable and need dealing with.  They are too easy to pick up.

Could it have a dietary connection, as this always rears its ugly head with gastro illnesses and there are several of them as you will know and they seem to clear quickly once treated.  I was certainly surprised when I found my blood counts were so normal as I was expecting a change with the lower dosage Jakavi I take.  The other good news is that my foot ulcers which  have plagued me for so long have finally healed.  Much to the credit of the excellent medical care from the local nurses and podiatrists.  Upon reflection I would say that the Ruxolitinib has played no small part here and when considering what contributed to their formation initially.  I am pleased the problem is now solved.  Well it is cloudy and wet right now and we expect a few more days of this to come.  Maybe you will get to that sunshine again soon.  Best wishws.  Let me know how you fare.  Best of luck.

Peter.

Hi Peter, glad to hear you had a good visit with your foot ulcers too.  I think you're on Jakafi, 5 mg 2 x a day.  Correct me if I'm wrong.  Thanks for looking up side effects for me.  Gas is definitely a side effect.  I think I'm lactose intolerant.  Prior to all this misery, I had a turkey sandwich with strawberry milk, (lactose) and later on in the evening I had ice cream (lactose).  I normally don't intake too much dairy products.  I guess I lost a little weight and wanted to put it back on.  My gastro retired, he only works 2 days a week.  His son has now taken over his practice.  So because dad did all my endoscopys, I have to wait, he's booked solid.  All the good ones are taken. Lol.  Feeling a little better today.  Gorgeous sunny day! Same for the next few days.  Hopefully, I'll be able to go on my friends deck and get some sun.  Be well Linda

Hello Linda,

I'm still on the same dosage of Jakavi as you suggest and seemingly may be on this for a little while yet.  I am more than content with that, despite the flatulance as you mention which seems worse after a drug dose is taken.  It is I understand, quite widely noticed by others who use Jakavi.The good news is that you are feeling better today and may it continue so.  One cannot enjoy life by feeling ill.  Appears you may have cured yourself before you reach your gastro specialist.  A little sunshine won't harm you so get with it Linda.  With Glastonbury now deceased we have to contend with Wimbledon over the next two weeks although the first weeks weather does not seem too hopeful.  They serve some good strawberries and cream there if you wish to go!!  Be well soon.   

Peter.

Hi Peter I was happier on 5 mg. Jakafi 2 x a day but at my visit my platelets rose 100 pts. So he added 5 more mg.  now I'm on 15 mg, and I feel the difference.  The flatulance is a given I think.  But being nauseous is not good.  I've bought Gas X which is a big help.  I am feeling a little better cause I'm watching my diet too.  I was starting to get a bit reckless.  Are you close by to Wimbleton?  Have you ever gone?  My son is dying to go there.  He's a tennis buff, yes, he plays unlike me.  He's been to the US open quite a few times when he lived in NJ.  He's going to Cuba on a cruise out of Florida in July.  Was in the sun today, 85 degrees with a great breeze.  Would like to have the strawberries & cream, but I don't think my stomach would like it.  Lol Linda

I believe you said earlier that you were taking 5mg three times a day.  If so is it possible for you to reduce this to just two doses (morning and evening).  This of course would leave you taking a double 5mg dose and a single 5mg dose which would spread the load a little.  Initially I was taking 15mg twice daily and never really noticed any fallout but maybe this was because of the previous use of Hydroxycarbamide (Urea) which proved so potent.  I am as you know just on 5mg twice daily now.  I never took doses other than morning and evening (after food) and still stick to this.  I no longer live anywhere near Wimbledon but have from time to time had occasion to visit this spectre.  Pleasant, but not my interest personally.  Tickets are difficult to obtain and need to be applied for early.  Not cheap though.  i now live in S.W. England but spent much of my earlier life in London which I know very well.  I have family that live reasonably near to Wimbledon but they do not have a passion for tennis.  Good wishes.

Peter.

Hi Peter I have tried the 5 morn and 10 @ nite.  Seems like when I did that, I woke up with a hangover type feeling.  I'm starting to wonder if Jakafi doesn't like me. As you know, this past week I've been having a lot of gastric problems.  Won't know anything till July19, which is when I see the gastro, which unfortunately is also my birthday.  So there goes my plans for Atlantic city.  It's the same for me with the US Open.  Tickets are expensive and I live about 2 hours away.  It's in Flushing Meadows which is in NewYork state.  I'll stick with the tv.  I'm wondering if maybe Pegasys is my answer.  I was fine on your dosage of 5 mg 2 X day.  Since the extra 5 mg. has been added, not so good.  Thanks for thinking of the dosage change for me, you know I appreciate your input.  Be well. Linda

Hi Linda

Thanks for your reply.  Things are not falling into place for you at the moment

that's for sure.  Instead of taking a 10mg dose could you halve one tablet and take these halves when you take a full tablet in the morning and evening.  I have often done this myself and the doctors don't mind.  As long as you take the correct dosage it might just ease things a bit.  Still some good news for me - have just returned from the podiatrist who seems think they can soon give me my feet back again.  After all these years!!  Get well soon.

Peter.

Hi Peter I have been taking the Jakafi 5 mg 3 X a day.  I thing I've been on this regiment 2 months.  Very happy to hear about your feet, I know they've been bothering you for quite a while.  Must make you very happy.  It was 90 here today and I lasted in the sun for 1 hour. 1/2 in, 1/2 out. Then again.  We don't have a pool, only a hose, so we spray each other down. But the sun makes me happy.  I seem to forget my problems when I'm there in the sun.  If I stay home I tend to dwell. I still think I'm gonna go to NY.  I'll wait till my next visit with this dr. And probably make an appt there.  I'm only 12 miles away from New York City. Be well. Linda

Hi Peter a question was asked recently and perhaps you know the answer.  Someone has progressed to MF in the UK and was asking if stem cell transplants or bmb transplants are performed on people over the age of 60 in the Uk? Perhaps you know this.  My stomach issues have subsided quite a bit in the last few days with a lot of dietary changes. Hope you're doing well.  Linda

Hi Linda.

Strange you should come up with a question on stem-call transplants as ItchyChris forwarded a message to Pannej on this very subject.  You should read this.  How very apt.  Now as a response to your query on MF I did in fact ask my consultant haematologist about the future of stem-cell treatment on all MPN's.  The answer I received is that  firstly one would need to find a donor with an exact blood match, and this was just the start of the matter.  This in itself posed a monumental problem.  There is the necessity to put together a very experienced set of medics to perform the surgery which again is difficult.  The patients age was a consideration and only younger patients could expect to survive the process, if at all.  This type of surgery is very intense and no guarantee of success could be offered.  The risks were high indeed.  Stem cell treatment is still in its early stages of research despite what is said about it in the media.  Once you embark on the surgery there is little chance of any way back, due to the complexity of the procedures., whilst the post operative care can last for 2 years or more during which time all sorts of problems could arise.  The NHS would not consider any such treatment except in very special circumstances.  People over 60 years would not normally be considered for this surgery.  Couple this with ItchyChris's response I'd say it was categorically a no-go situation.  Maybe as time progresses things may alter but I suspect it will not be for a long time.  It was said to be a very uncomfortable process to undertake, to put it mildly.

Well, it is nice to hear your stomach bug illness is diminishing, as I intimated earlier, maybe you will not need your gastro specialist after all.  Yes feeling quite well thanks Linda - maybe it is the sight of the Sol that has settled things down.  My diet never changes really.  Just eat sensibly and exercise where possible.  I never feel the need for lavish lunches.  Weight and other factors stay static.  Best wishes for a quick recovery.  I think the ItchyChris comments will be found on another thread.

Peter.

Hi Peter I know the gravity of a stem cell transplant and of a bone marrow transplant.  A friend of mine had a bm transplant for leukemia over 24 yrs ago.  She was in the hospital over 3 months.  I talked to her a lot.  It's brutal. But she was young in her 30s and a single mom and was determined to beat it.  It was done in New York@ Memorial Sloan Kettering Hospital.  She survived.  I don't know how to find itchy Chris's thread.  I'm no tech wizard.  I was just asked about a donor's age threshold in the UK.  I figured you'd know.  I think it's 55 in the US.  Yea, stomach has settled down somewhat, thank goodness.  Thanks for asking.  Linda

Hi Linda,

I don't know that there is any age limit on the stem-cell transplant in UK but as I said earlier it is not considered for people over 60 yrs but even below that age one would have to meet some very strict criteria.  Really I think it is down to the judgement of the specialists here who would carry out the surgery.  One doesn't hear too much about it.  As you have suggested it is normally younger patients seem to be the recipients whatever their illness.

Actually Linda I didn't need to discuss further with the consultant, my conversation with her took place a couple of months ago now at one of my visits.  Not that I was considering the procedure myself it was a matter of interest during a stem-cell general conversation.  There would need to be a huge advance in this field before I would even look at at it.  ItchyChris  was on a PV thread on this site Linda within the last 48 hours.  You can find it by looking at similar PV threads to the one we are on now under the same PV heading.  I think I have seen her also on the MF thread as well.  Best wishes.

Peter.

Hi Peter I was just wondering about the age limit in the UK as someone from the UK was asking that question.  I found Itchy Chris's thread.  It's just something I was curious about.  Not for myself at all.  Hope you are doing well as always.  Linda