Saw my Haematologist yesterday

[Pachena]

An update -

I last saw my Haematologist, Dr Rebecca Cleary 2 months ago. My platelet numbers hadn’t changed so she said to maintain the lower dose of Hydrea so as not to flare up any mouth ulcers etc. To take it slowly.

I contacted her to have a urine test done a month ago for my smelly urine as encouraged by you supporters on here and as it turns out there wasn’t anything to worry about. The smell disappeared after that, would you believe. Crazy!

My platelets this time have gone down to 449 from mid 600’s so that was great. She asked how I felt and I said I wasn’t sure if it was having Hashimotos, or being post menopausal, ET or the Hydrea but fatigue was a constant and the decline in concentration was a bother. Also I wasn’t feeling I was coping with my exercise, Pilates etc at the gym as I used to be.

She said some people are very sensitive to Hydrea and while my numbers have gone down fairly easily, others have to take larger doses to try to reduce them, many without apparent side effects. I have had some gum ulcers on and off so she recommended that I decrease just slightly, taking 1 x 500mg tablet of Hydrea on Monday, Wednesday and Friday and have a break on the weekends.

She will see me again in 2 months unless I need to see her earlier.

I mentioned to her that a couple of weeks ago, in the night I became aware of not knowing where I was. The same feeling I had twice (a week apart a couple of years ago) when I was driving. I told her, I don’t know if it was real or I had just dreamt it. She said it can be difficult at night to know but next time don’t hesitate to go to the emergency department. A couple of years ago I was told they were TIA’s.

She said while the Hydrea is working to decrease the platelet numbers, I am still a high risk candidate for strokes, heart attacks and clots.

Anyway, just thought I would share my progress.

Best wishes,

Sharon 🌸

[hunter5582]

It can be hard to sort out symptoms when you have a complex case and are taking meds that can have adverse effect that are the same as the disease(s). Sometimes, timing is the only clue.

The oral ulcers are a common HU adverse effect. I also experienced that issue. I would at times experience large raw bleeding ulcers in my mouth as well as the smaller sores. I also experienced what looked like leukoplakia. My tongue turned as white as a snowbank. These issues and the other adverse effects did not resolve until I discontinued the HU.

The issue you describe does sound like a potential TIA. This is a significant risk with MPNs. It is very important to deal with these microvascular event when they occur. You should definitely follow the advice to go to the ER immediately if it happens again. Just don't drive yourself. That is not safe.

Wishing you all the best as you move forward.

[Pachena in reply to hunter5582]

Thank you, Hunter. I appreciate your support and time you give to reply 🌼

Gosh a white tongue certainly not a good look (not mocking as it’s quite a big side effect, just picturing it 😊)

My tongue always feels too big for my mouth. A friend of mine would complain hers was swollen and feel like it was burning. She gave me a clip to watch on signs of Hashimotos and one obvious one was a scalloped tongue which I’d not heard of before. So I looked in the mirror and stuck my tongue, Lo and behold, down each side of my mouth were the indents from my teeth. I have for a long time thought my tongue was too big for my mouth.

I learnt recently on the thyroid part of this website that carpal tunnel often happens with thyroid problems, something that’s been bothering me the past year so I’m always learning.

I’ll definitely go to the ED next time 😉

Thank you 🌼

[Carol0925]

Thank you for commenting. I might think about mon, wed and fri dosing. I’m Post menopausal too which does interfere with lots of diseases unfortunately. Take care and best wishes to you. X

[Pachena in reply to Carol0925]

Thank you 🌼

[Wyebird]

I would say you are on a very low dose of Hydroxicarbomide but that is no help to you. We are all different. I too used to work out about 10 hrs a week plus dog walking. It’s slowly got less. I stress easily because fatigue doesn’t allow me to cope with unforeseen problems ie boiler break down water leak.

Maybe you are a candidate for alternative treatment.

I love peg interferon.

Meanwhile ;

Don’t be too hard on yourself slowing down is something I’ve learnt to do. If I’m going for a good night out I stay in bed all day. Then I’m rating to party.

[Pachena in reply to Wyebird]

I appreciate the sharing on here as it helps. To look at me, I appear healthy and fairly fit. Yet inside I feel the decline. I think it takes some adjusting to realise that I may not be able to keep up at my previous level. I’m not an athlete (long gone are the high school competitions) tho I walk daily, do several gym classes a week and am kept quite busy with elderly parents and a reasonable sized family.

It’s read on here how others are facing similar challenges is comforting. The mental battle gives a pounding. I see my parents who have had healthy lives suffer with different ailments tho the worst I think is to see my father lose his agility, then mobility and the falls. He had to go into care. His mind is bright tho his body weak. It’s a reminder to me to make the effort now to try to keep my balance up etc so I age with less problems.

I’ll keep in mind about other meds, Wyebird Thank you. Also so read you stay in bed all day so you can party the night away, made me smile 😄👌🏻

Mostew Yes Dr Cleary is lovely 👌🏻

Thank you for the hints for gentle yoga. You are right, maybe I do need to lower the strength of the classes. I stopped it’s pump and other strength classes this year as I developed carpal tunnel and just felt that I was heading for more injuries if I kept it up. I enjoyed the boost tho not the injuries.

I have heard a little about the rebounder tho I have an exercise bike in our unit that is quite neglected. I’ll ask the exercise physiologist about it 😃

Solebury Steve, Thank you for sharing. I am amazed at your stamina for triathlon training. That’s something I would have loved when I was younger.

It was good to read your story. I know I shouldn’t be tho I am a bit nervous about progression as I read on here. So I hope with lifestyle modifications I can keep my body steady for as long as possible.

I have cut out mostly dairy and alcohol in the last two weeks and am amazed at how my body aches have drastically decreased. I never believed it would make such a difference. I knew my inflammation was high and I needed to stop alcohol for a medication I started which wasn’t a problem. Plus my doc suggested no dairy but having minimal sheep/goat dairy if I wanted.

It’s good to be part of this group and learning together 🌼😊

Thank you all 🌸

[Mostew in reply to Pachena]

The rebounder works to keep muscles strong if you use a resistance band ,arms to, I believe . I don't know if you read previously me saying a healthy mind is as important as body .

As our bodies age /fail us ,

its even more important to have a strong positive mind.

Having our MPNs helps us to accept things as they are and see all the things we can do not things we CANT .

Yes a little sheep's/ goats cheese is nice for a treat. Anti inflammatory diet will help you.

Best wishes

[Wyebird in reply to Pachena]

Oh my word you are making me feel guilty my exercise regime has dropped considerably and I’m feeling the negatives of not doing yoga any more.. You’ve succeed in motivating me.

Right- onwards and upwards🥴!

[Pachena in reply to Wyebird]

Ha ha 😄 glad to have helped Wyebird 🤩

I find it I don’t move myself I start to feel I’m ceasing up which is a strong motivator to move 😄

[Mostew]

sounds like you have a great heamatologist.

How about looking at gentle yoga and ,or ( and) rebounding ( indoor firm small trampoline . I have one and it’s great .

[Solebury]

It seems that hydrea, even with the negative effects, is delivering on your platelet count but oh those side effects can be tough. My ulcers and such went away after a few months but not so much the fatigue and occasional brain fog. I was on hydrea for 10+ yrs with ET (have progressed to PV since and now on interferon). The fatigue and brain fog seemed to come and go for me but wreaked havoc on my triathlon training forcing me to give it up. It was hard to understand whether the symptoms were from the disease or the meds. I internalized the struggle for normalcy but after about 5 yrs I was exhausted and tired of trying to prove I could work at the pace I was before being diagnosed. Fortunately I was able retire at 60.

Its a long road. I’m 68. At this point in time there are no real silver bullets but with research? Who knows when some cure might come along. For now we have meds and treatment options to keep our blood at something near level. Without a cure I’m now just trying to hold the line against disease progression, the symptoms of itchy pruritus and staying in as good a physical condition as I can. Exercise😎

I wish you the best!

Steve

[Windy51]

Hi Pachena I too had problems with Hydrea I was on it for over two years I started getting nauseous a lot I put on weight I felt just flat a lot and tired and my hair was falling out a lot I just wanted to try something else my hospital put me on Anagrelide I be been taking it for nine months so far I’m ok my hair is falling out a bit hope it doesn’t het worse I have an appointment next month and bloodtest so hopefully all is ok I hope you feel ok with it good luck

[Pachena in reply to Windy51]

Thank you, Windy51

Good to read your story and I’m sorry to hear you have struggled. Hopefully this new medication will work long term for you.

The main things for me is the fatigue and the brain fog. Tho as I said I don’t know what is really causing it.

As Hunter said, maybe timing will be what helps me work it out.

Thank you for sharing 🌼

[FJOS in reply to Pachena]

Hello Pachena,

I have been on Hydrea since early 2016 and initially it took about 6 months to get my platelets down from 1M to 350k. My haematologist started with small doses but increased each month until my levels came back to the normal 350k. By that time I was taking 18 capsules a week - 2 on 3 days and 3 on 4 days. My levels have remained steady since then right up to this month. I have had no issues of any kind!

I am 78 years old widower with type 2 diabetes, COPD, and many other health issues but they have not stopped me leading a very normal life. I play golf 2/3 times a week and I walk the course which involves a 5 mile walk over a 4 hour period, weather permitting.

I also do a lot of voluntary work for some charities which makes me realise what some people have to deal with in their sometimes hellish lives - we are blessed to have found solutions to our health issues which many people out there will never find!

I am sorry to hear of the problems you have encountered but trust in the professionals who always have our best interests at heart - they will bring you through this in time.

Life is for living so focus on the positives and and enjoy life to the full!

Kind regards,

Frank

[Pachena in reply to FJOS]

Thank you Frank 🤩

Lovely to read your story and see how you have managed and how you get on with your life. I didn’t mean to be so down lipped in my post above. I am grateful for many things. Life often throws us things we have to adjust to.

My days have been very busy and I’m working on making my days work for me and others tho bringing in some boundaries where needed.

Thank you for the very positive vibes 🤩

[mhos61]

I would take some comfort in that you have a great haematologist there. She is listening to you (so important) and acting accordingly.

You have a lot going on with hashimotos and being post menopausal to differentiate the cause your present symptoms. When I have fatigue days, I’m the same, is it the disease, age, medication, care commitments, or a bit of all!

Presumably, the hashimotos has ruled out Pegasys?

Anyway, I have been on a very low dose of hydrea for seven years, one tablet Monday to Friday only. My platelets are very stable 320/60 ish. I’m in complete haemotological remission with no side effects other than some fatigue at times, which may or may not be related to the medication. And more importantly, my thrombotic risk has been significantly reduced, especially as my haematocrit was borderline at diagnosis which has also responded nicely to the hydrea.

Hope things work out for you!

[Pachena in reply to mhos61]

Thank you, Mhos61 🌸

Yes you are right, Dr Cleary is not rushing me and I do feel in good hands.

Thanks for sharing. A good learning curve to read how others are coping in their circumstances 🤩