MPN Voice

A bit gloomy

I saw my haematologist today and as my counts have been low for a bit now and I'm getting more symptoms (post ET/MF) he wants to do the dreaded bone marrow biopsy. I asked for sedation but apparently they can't do that any more but can do a general anaesthetic. That will do me! The low counts could be a sign of progression along with more sweats and more bone aches. The BMB will give more clues. I was a little bit alarmed to hear that with counts as low as mine it would be difficult to tell if it was progressing to AML. He has lowered my dose of Jakavi and reduced the iron chelation protocol (I have very high ferritin from transfusion dependency) in order to help improve my counts. The fact that I have battled my MPN for a total of 23 years now is giving me confidence that I can go on battling but I have to face up to the fact that this is progressive! My glass is still very much half full and I don't like confronting what could be happening - and I have to admit to being just a little scared at the moment. I have four sons who are all doing well in life, one granddaughter and another grandchild on the way so I have a lot of positives to concentrate on.

Sorry, I just needed a bit of a rant to people who understand!

Keep well everyone, Jan

39 Replies
oldestnewest

A BIt gloomy. Hi Beetle. It's probably a good thing that you need a BMB to find out what's going on and I understand your worries but don't concern yourself about it. I had one and whilst it was uncomfortable it was bearable and over ina few minutes. Of course you are concerned at the "what ifs" - we all do that. I hope all will be OK. Let us know how you get on? Every good wish to you. Mary

1 like
Reply

Hello Jan

I don't blame you for being a bit gloomy .

It's always hard when you go to clinic and find things have changed and not for the better .

I hope those reductions in meds will help your counts .

Good luck for your BMB and glad you can have a GA .

I get gas and air for mine so I'm often away with the fairies !

Hope you feel better soon I know what's it's like xx

2 likes
Reply

Hi Jan

Firstly, from a relative newbie ( only diagnosed with PV last year) I think you are inspirational ! Afyer 23 years and still a glass half full appriach to life - you arexa role model for all of us startng our MPN journey . But, even role models are allowed tp feel a little apprehensive and worried when our peskie blood counts aren't behaving as we would want them to. It's a funny old journey I think - all the blood tests and you inevitably wait to see whether they are stable or not .

I am so pleased that they are giving you a GA so you will not have to worry about the BMB procedure itself and I really hope that the results are reassuring .

Big E -Hugs to you

Dianne x

5 likes
Reply

Hi Jan, I'm pretty new here, but can understand your concerns. I've been waiting for quite some time now to hear news of another health issue which was a concern for gallbladder cancer, which is apparently very nasty. Thankfully an MRI shows my tumour as benign, so that's something, but I know what is it to worry. Sometimes it helps just to write it all down. I hope the bone marrow biopsy isn't as bad as you fear. Stay positive - there's a lot the docs can do nowadays. Keep concentrating on those positives. Wishing you well. Liz

1 like
Reply

Hi Beetle,

Great approach to life and you have every right to be gloomy now and again. I had a BMB last year to confirm my ET had transformed into stage 3 MF.

The procedure itself took about twenty minutes and I had a couple of locals in my hip to deaden the area. It was uncomfortable but not overly painful. After a cup tea I was able to drive home.

Good luck with the results and I'm certain people on this forum will wish you bit of luck and hope for a successful outcome.

Chin up.

N

1 like
Reply

Ay Up Jan, , 23 years not out is a damn good MPN innings, but like you say you have the fight in you to go on. I admire that. You're right that the BMB will reveal a more precise and broader picture of what's going on within which may explain your counts of late. Of course we all accept that there could be a step - changein our condition status as time goes on.

I could tell my underlying MF was worsening even though the Ruxolitinib was doing a reasonable job at symptom control. That was when I asked to be referred to Manchester and of course the BMB was one of the first things they did.

I love your glass half full approach , that is generally how I tend to look at events which shape my recovery. And we both have much to be thankful for family wise and to spur us on particularly when a new life is due to enter our world.

Jan you have supported and been here for me all the way so if I can reciprocal in any way please don't hesitate. . I reckon if you were a beetle you would be a magnificent Stag beetle whereas I would likely be a Dung beetle coz I always seem to be pushing against a pile of poo 😉

Keep your chin up my friend xx

PS, forgive any typos my eyes are very poor esp after drops today at clinic.

13 likes
Reply

Hi Jan. Easy to understand why you're a bit gloomy. It's always scary thinking about the "what ifs" especially the ones you have now. But it's so clear how strong you are and what a wonderful perspective you have. A lot of us are quite fond of you. You've been a big help to so many of us so let us help you now. Try and visualize all of us being with you in person and giving you big hugs and support. I'm sending you a bushel of e-hugs. Katie

PS. If you ever doubt how special you are to us, and how much we're standing with you, think about the fact that our beloved Jedi has come back on the forum just for you.

4 likes
Reply

In some respects you're right Katie, , I would post more but I'm really struggling with the old mince pies as my cataracts are very large. It's like looking through a steamed up double glazing unit. I find the pale grey script on here very difficult to read even with my magnifyer and unlike roger sites ie Amazon I can't enlarge screen by opening out with fingers. Unless there's another way . . .

When I've had cataracts removed I will be more present on the Forum as it has helped me through difficult times. Out of interest I went to Blood Donation centre in Liverpool and they will use my blood to make me some eyedrops from blood serum. Marvellous stuff.

Chris x

2 likes
Reply

Wow! What can't they do nowadays? (Other than easily cure MF!). Thanks for your kind words to me, Chris. You know we are thinking of you even when your damn fog is too thick to join us! I used to be a mobility instructor for visually impaired children and did some training myself with cataract simulation goggles and I know it is definitely no fun - and I could take them off! You wil notice such a difference after they are removed. Have you to jump over more hurdles before they will do that? Take care, my friend xx

Reply

Hope not as I will definitely come a cropper not being to see hurdles. Guy appreciated how debilitating my steroid induced cats must be as he couldn't see into back of my eyes so said I know you can't see out very well. I turned to look at the wall and replied "yes they are quite bad" . . He actually said they will continue to get worse still. Be good if I could have at least one before Crimbo. X

1 like
Reply

Hi Chris,

I do hope you can get your cataracts done soon. I've heard cataracts are a bit of a postcode lottery in the Uk, people can get one done but not both! Silly really, when looking at cost it's a drop in the ocean compared to your SCT. Try a bit of crowd funding Chris and go privately! I've no doubt you would get a good response. Amazing that you can have eye drops made from your own blood. That's so futuristic.

Please don't feel you have to reply Chris, I know how hard it must be for you. Unless of course you employ a PA to deal with all you fan mail!

😃😃

Lots of love

Judy x

1 like
Reply

Cheers Judy, , a relative of my wife was recently diagnosed with CML and they set up a just giving page to cover hospital osts travel etc, though on NHS, and it went over £1000. But I'm afraid that simply isn't my style . Interestingly in Blackpool because of nhs pressures patients are often referred to the private hospital for treatment. All that paying often achieves is that you get seen quicker.

Always good to hear from you , keep well x

1 like
Reply

I hope so too! Good luck x

Reply

Dear Chris, life with your prize winning cataracts sounds pretty awful to be blunt. But having eye drops made of one's own blood sounds very futuristic and cool. How long til you can get them removed? Katie x

1 like
Reply

Unsure Katie but put on waiting list as urgent so hopefully within 3 months. Be good to use blood eye drops for a little while as my eye surface can't be too dry for op. Due to get those in about 3 weeks. X

1 like
Reply

HI. I CAN DO THE FINGER TRICK ON MY PHONE WHEN ACCESSING THIS FORUM (USUAL MODE!). OR MAYBE TRY ZOOM / ENLARGE FUNCTION ON LAPTOP / COMPUTER?

1 like
Reply

Thanks Ebot will explore options.

Reply

Yes, I just tried and on my I Phone I can too. Hope you can Chris!

Katie

Reply

Just have my tablet but I will fish around, the text is very pale which doesn't help the poor sighted. Can type in ok just need magnifyer to read posts. Thanks xx

Reply

Hi Beetle, it's great that you are so positive but understandable you are worried. The dreaded AML once mentioned is difficult to put to the back of your mind. Easy for me to say wait for the results but it's the quiet times in our lives that leave us pondering ' what if' we're only human!!!! I've had a Biopsy and it was fine the discomfort came after the anaesthetic wore off even then it was just an inconvenience. You have loads to live for and I so hope this is just a glip and nothing more. We have a very scary illness that's for sure I've been advised my meds are no longer working so it's a case of wait and see!!!!! I'm a very busy bee and apart from a few moments of wondering feel I will live for many more years. I'm giving it my best shot anyway off to Tenerife with my 2 daughters and my grand daughter and I intend to have a great time!!!! You rant away that's what we're here for and I so hope all the results come back with no AML in sight.

Best wishes.

Pat

3 likes
Reply

What condition have you got and what meds have you been taking up to now.

Reply

I have post ET/MF. I'm on Jakavi right now and have spent many years on HU and a couple on Busulphan (rarely used nowadays)

Reply

Everyone needs a good rant and a good scream (real or metaphorical!) from time to time. And that's what friends are for. Stay strong. And keep that glass topped up! Sending huge e-hugs. Xx

2 likes
Reply

Hello Jan

What a terrible worry for you. It's difficult to know what to say to make you feel any better, but I hope that it helps knowing we are all thinking of you. I also hope the BMB happens soon and that you don't have to wait too long worrying about the results.

Sending you my very warmest wishes

Paula

1 like
Reply

I hope the bmb goes ok for you Jan. To still be positive after 23 years is amazing! It gives us relative newbies (5 years for me) hope to stay the same. Keep us up to date with your results.

Karen x

2 likes
Reply

Thank you all for your wonderful and heartwarming responses. I just love this site. It is SO different from the American based FB pages where you sometimes risk outright hostility! I can just feel the support coming from here. It is so special. There are some logistics to be sorted as to where I will have the BMB so it is not imminent- a month or two away maybe so I'm not wasting energy worrying about that right now. I have had one before and know what to expect but also know some doctors are better at it than others!!

I have been waiting for a long time for a scan to see if/what my iron overload has done to my body. The process to reduce it - chelation - seems to be working for me. Another positive to be grateful for.

Anyhow today is another day and all you wonderful people have put the liquid right back in my glass so thank you from the heart

Keep well

Jan xx

5 likes
Reply

Hi Jan, I was diagnosed with ET and early MF 3 months ago. I had the dreaded bmb with local anesthetic. The discomfort is bearable, but I would suggest that if you have someone to drive you that you ask the doctor if they can prescribe something to take that will ease discomfort during the bmb. I will be having another bmb in a few months and that's my plan.

Being a little scared is normal. I definitely am, but like you I'm staying positive and proactive in caring for myself.

You're gonna do great because of your positive attitude

Best

Christina

1 like
Reply

Good morning Jan,

Thinking of you and wish you all the very best news.

Linda x

1 like
Reply

Hi Jan, you can moan all you like on here, that's why we are here, to support you when you feel down and to celebrate with you when you feel up. Sending you lots of hugs etc for when you have the BMB. Love Maz xx

3 likes
Reply

The worst thing about my BMB was when I heard the doctor ask for a longer needle - it was to get through the"padding" on my hips!!

Best wishes for the future

Lizzie x

6 likes
Reply

😲😂! I am well padded too. I am future proofed against possible unplanned weight loss - that's my excuse and I'm sticking to it! X

7 likes
Reply

How long have you been on Jakavi. What were you on before.

1 like
Reply

I was on HU for about 16 years with steadily increasing dose. When I was diagnosed with MF progression I changed to Jakavi - about 5 years now

Reply

Very best Jan,you really are a strong person...all those years ...you have just given me a boost,I'm P V 7 1/2years,just had a not good blood result and feeling down...nothing compared to how you have battled on. Worry not about the B M B,soon be over.Keep strong and look forward.Sally

2 likes
Reply

Hi Jan,

I think there isn't much left for me to say that hasn't already been said by our supportive MPN community. However, I would just like to say that my thoughts are with you at this anxious time.

Mary xx

2 likes
Reply

Hi Jan I'm abroad at the moment so limited wifi - just wanted to say how sorry I was to read your post and hope everything works out well for you. Thoughts are with you x

2 likes
Reply

Sorry to hear your news and I hope you are feeling a little better. Thank you for sharing your story, I was diagnosed a year ago and so pleased you have survived for over 20 years, (what diet are you on, what are you eating )?? I have been feeling so angry and I can't seem to shake it off but at the same time very emotional and bursting into tears ten thousand times a day. I thought ( though I know irrationally) I had been betrayed and cheated by life and was facing doom and gloom and I was limited to 5 years before I would run into serious trouble. You have shown me in black and white THAT is not the case and I can continue to a grande age if I take care. So Thank you.

I am scared of the biopsy too, I've heard it is very painful. Stick some head phones in your ears and listen to your favourite tunes, hopefully you go to sleep..., Best wishes ,

1 like
Reply

Yes, thank you! My equilibrium has been restored by all the wonderful people on here. I'm glad I've given you some hope with my example. When I was first diagnosed the internet was in its infancy so I was not able to scare myself like folk can today. I just got on with bringing up my four your boys and to be quite honest I guess I was so busy with them that I didn't have time to worry/panic about me! I have a reasonable diet with mostly chicken and fish and fresh vegs and salad. I eat a lot of fruit too.

Take care and try not to worry too much. Best wishes

Jan x

Reply

Thanksx

Reply

You may also like...