First post and thank you: Hi I am relatively new... - MPN Voice

MPN Voice

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First post and thank you

Katy121
Katy121

Hi

I am relatively new to the group having joined about a month ago. I find myself looking at the posts every day as a way to connect with people with similar medical issues to me. I am 48 and was diagnosed with ET when I was pregnant with my child - there were no previous issues or flags before then. My life has been relatively uneventful until recently - I have been on aspirin for the past 9 years. I had an unrelated bleeding issue and so was given a BMB to see what was going on.

Anyway the BMB results showed I was suffering with pre-MF and I started on weekly 45mg Pegasys injections almost immediately. Over the past few weeks, my platelet count has come down (at its highest it was around 1200) and I now (for the first time since I was pregnant) have a platelet count in the normal range. I have a few challenges with Pegasys (including some nausea), but generally I have done well on treatment.

I just wanted to say thank you. Being able to read the posts of other people with MPN has really helped me. It is hard suffering from an illness which is not well known and which most people have never held of. Knowing you are all around to ask questions (if/when I have then) has made it much easier to cope with my illness. My priority is to be around to watch my child grow up and be around for as long as I possibly can to be with her.

Thank you all!

Katy

18 Replies
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Hi Katy121, welcome to our exclusive group. Like you I find this forum to be very helpful.

Hi Katy,

Welcome to our lovely supportive forum.

I’m sorry to hear that your ET has progressed to Pre MF, but it’s so encouraging to hear that you have responded well to Pegasys. All the literature I have read on Pegasys is extremely positive, it seems it works at a deeper molecular level. I don’t know why we’re not all on it🤔. Hopefully, the nausea will lessen with time.

Mary x

Hi Katy, Welcome to our wonderful group. I was diagnosed with Pre-MF quite a few years ago. My only difficulties are some fatigue (part of which is being 69 & out of shape) heat intolerance more than others (in Florida we get high heat & humidity) & a few muscle aches. But other than that nothing. I don’t see any reason you shouldn’t do well. So glad our posts help you. I know this forum has been a godsend for me. Take care. Katie

Oh oh lovely of you. A huge welcome. I find your post touching. You have child to support which is a huge comfort to you but must be difficult when you are under the weather. Especially upsetting now you are pre-MF.

Reading posts like yours gives me a kick to get on with life as I wasn’t diagnosed until age 59. Yep , even now almost 5 years on now and then I still feel sorry for myself.

I’m ET . On a what I consider a high dose of anagrelide and hydroxi but relatively symptom free.

Hey Katy... :-)

Welcome to one of the most exclusive clubs for anyone to be able to enter into... Memberships are very rarely handed out, so obviously... you are a most fortunate girl indeed... Better buy a lottery ticket soon... ;-)

More seriously, you are in excellent company here Katy... :-)

Just curious about some bleeding that you mentioned above, and it might not be relevant to you... However, when I was first started on Low Dose 100mg daily Aspirin, I was not told about 'Enteric-coated' Aspirin... If Aspirin is NOT coated in this way, it has been known to be associated w/ some bleeding problems. I had some problems w/ Portal Vein bleeding and having blood in my throat. nose and bleeding gums too...

Once, I switched, my bleeding problems improved markedly... Anyways, just thought I might mention it...

Stay safe & well and a very warm welcome... 8-)

Steve

(Sydney)

Katy121
Katy121 in reply to socrates_8

Hi Steve

Thanks for the email. My bleeding issue turned out to be Achenbach’s syndrome - another rare condition (I seem to specialise in them). So luckily nothing major but a very strange bruise on my finger. It was only identified when a colleague came across it while looking for something else. Anyway it took me down the path to getting a BMB and at least it was nothing more serious.

Also, just checking, is there a membership card for this “exclusive club”? 😁

Thanks again

Katy

mhos61
mhos61 in reply to Katy121

Hi again Katy. I’m interested in the ‘Achenbachs syndrome.’

Before my ET diagnosis, on rare occasions I would experience excruciating pain in small area of a finger or palm of hand. It would itch, swell and go blue, very very painful when it happened. I googled it and ‘Achenbach’s’ came up. I never went to the Drs about it. Another forum member has mentioned this too, I wonder if there is a connection to ET? I hope not, as my first experience was around twenty five years ago, I was diagnosed with ET four years ago!!

Lena70
Lena70 in reply to Katy121

Achenbach's! Yes. This happens in my fingers and palms as well. It starts with intense itching and then I feel a popping sensation and my finger swells and goes blue. I'm then left with a bruise that takes a little while to fade. This has happened to me off and on since I was a teenager, well before my MPN diagnosis. Strangely enough, I can't recall it happening since I started on aspirin in January.

Katy121
Katy121 in reply to Lena70

It is a strange experience to have a bruise when you have done nothing to that area of the body. For me, I was on aspirin when it happened, but hopefully you won’t get another episode

Hi Katy, welcome to the forum I am also 48 and diagnosed 3 years ago after a mini stroke originally told it was PV. Back in January this year after a BMB was told I had ET/ Pre MF a lot to get my head around but having this forum to come to when questions or reassurance is needed has helped a lot. I have 3 children 23, 17, 15 they keep me going they are the reason I don't give into anything be it tiredness or feeling down right yucky .

So welcome again!! 😊

Nettie xxx

Hi Katy, welcome to this lovely friendly forum. I have had tremendous support from everyone since joining 2 years ago. It's so comforting to be able to ask about your worries to people having the same obscure blood disease. I hope your nausea soon clears. Regards, Fran

Hi Katy, First off welcome to our group, I was diagnosed with P.V. 15 years ago shortly after my 50th Birthday. In August or September last I had my third B.M.B. and following that was diagnosed Pre M.F. It came as a bit of a shock but life must go on albeit not as we know it 😀. At this stage my family of four are reared and my eldest Daughter presented my Wife and myself with our first Grandchild little Rôisîn in March last, my hope is to see her grow up to be a young Woman although as they are in Canada I will not see her as often as I would like. Other than that I intend to do as much as I can and rest as often as my body tells me.

Best of luck for the future Katy and no matter what, stay positive.

Hi Katy, welcome! Glad to know you are on Pegasys as it has shown great results in PV, ET and early MF. I have been on it for 5 years for PV and it has normalised my counts with minimal side effects. If you want to read positive Pegasys stories look up Prof Kiladjian, a French haematologist who is a great proponent of interferon and has had great results in his clinic, including many patients in remission. He attended the London MPN patients forum last year and did a great talk on Pegasys. There are many YouTube videos with his interviews and also his articles online (e.g. ncbi.nlm.nih.gov/pmc/articl...). Best of luck! Susana x

Welcome to our rather exclusive club. Glad to have you found the forum.

Like you, I specialize in combining rare disorders. I was diagnosed with ET over 30 years ago. It progressed to PV about 7 years ago. I also have another genetic condition, Neurofibromatosis Type 1. Both are kinase-based disorders. PV = JAK-STAT pathway, NF1 = RAS-MAPK Pathway. Together the two conditions increase my risks for certain kinds is issues like an increase risk of leukemic transformation. Despite all of that, I have lived a good life, have had a great career, raised two kids into their 30's, and enjoy the time I get with my granddaughter. Despite the PV/NF1 and a few other interesting learning opportunities of late - life is good despite the challenges.

Do please looks forward to being around to watch your child grow up. Our treatment options are improving and many of us will carry on for quite some time.

All the best to you. Look forward to hearing more about your MPN journey.

Hi, It’s funny you should say this as I (like most others) have come to rely on this group of fellow MPNers. It’s strange how just sharing experiences on here can be so supportive.

From day one when I reached out here (and got a warm response from everyone) I pledged to myself that, wherever possible I would try and assist others in their journeys in the sound knowledge that I can ask others for advice should I need it.

Love to you all,

Mark xxxx

Hi Katy121, welcome! Sorry you have progressed to Pre-MF. Pegasus Interferon has been providing some great results for people. Mpnvoice really is a place full of support, information, advice and really makes me feel like I am not on my own with this. I'm 44 diagnosed in March 2020 ET Jak2.

Hi Katy, Enteric Aspirin is better as it won’t erode your stomach lining. I also have a second “rare” condition: a Primary Immune Deficiency called CVID which was diagnosed long before my MPN. Although It here aren’t membership cards for our group, there actually are the ubiquitous plastic wrist bands in colors for Leukemia or the specific MPN you have. Our group, being as exclusive as it is, wants to remain a secret club so outsiders don’t try & join! :-). Katie

What a lovely post, other than the reason - having had your diagnosis! I was diagnosed in February aged 51. Like you I have found this group fantastic for information, understanding, support, and not feeling alone with it.

I've never been one for exclusive clubs, nor have I got any other rare diagnosis, so don't know what other groups are like, but feel like I'm lucky that I have landed uninvited into this one :-D

Hope all goes as well as it can for you,

Minu

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