Hi my name is Vicky I am 38 years old.
I have found out that I have had a high platelet count since 2004 ranging from 470 to 599 my GP referred me in August this year to a haematologist who has tested me for CALR, JAK2 gene mutations which were negative then I had BCR-ABL which was negative and now I have visited the Macmillan Unit for blood tests not sure what these are for now but have a telephone consultation on 28 June
regarding these and then he said next it will be Bone Marrow biopsy. I have always been a sickly person getting more infections than most people and getting run down. I am fatigued a lot and feel tired constantly. Has anyone else on here had anything similar it’s a long time to have something and I’m sure if it was serious it wouldn’t have been going on this long.
Hi @Vickys01 welcome to our forum and although we can not tell you what might be a diagnosis for you, that would have to be a medical person. However what I do pick up on is your anxiety.
I think it is so natural, there must be thoughts and feelings whizzing around for you.
I think the not knowing and waiting is horrible.
You say that you have a telephone appointment on 28 June so that will give you an opportunity to write down all your fears, questions, practicalities etc. so you cover everything you want to at that appointment.
From what you say you have had certain symptoms all your life, but it sounds as if you are having comprehensive tests now.
Do you have support from family and friends?
Perhaps the main thing is that you look after yourself.
Hi thank you for replying.
Yes 100% its the anxiety of not knowing
Hopefully I will get some answers at my appt on 28th and will update.
Hi @Vickys01 Erica has given you great advice. It’s very understandable to get anxious about things like, especially when it involves lots of tests and isn’t conclusive. You’re in good company on this forum, we’re all used to the waiting game and lots of tests along with the accompanying worry. I hope it doesn’t turn out badly for you and you get some relief from your worry. Remember we’re always around to listen if you need it.
A huge welcome to the forum and thank you so much for sharing this. It sounds like you have been on a rollercoaster of emotions. I do hope you are coping okay?
We do know that individual platelet levels can be naturally raised for many reasons and often further investigations allow for reassurance and a process of elimination so it is good to hear that your team are looking into this further and you may have answers will better explain why you have been feeling so run down.
Do you have a date yet for your bone marrow biopsy?
Please do know that should you wish to talk anything through in the meantime or indeed at any stage, we here on the support service are always here for you- Blood cancer information and support by phone and email | Blood Cancer UK
Take Care, Lauran
Thank you for your kind message @Franko
@LauranBloodCancerUK Thank you Laura for your kind message. I don’t have a date for this but should know more after my appointment on 28th with the haematologist.
Hopefully everything with be ok and I will just need blood thinners to manage.
I wouldn’t be so sure of that!I had a long run of fairly minor problems before an undetected indolent cancer blew up and I had to have my finger amputated.I developed what looked like ezecma in around 2005 and was duly diagnosed as such by a GP and to be honest at the time I was more relieved it wasn’t scabies which I thought it might be!But it got worse and worse making a terrible mess of my hands and feet and finally in about 2018 I was sent to the dermatology department at the hospital where they decided because the 30 substance patch test produced no reaction it was psoriasis and not ezecma.However four terrible tumours appeared on my hands and I had to have my finger amputated and radiation on the thumb plus two palm tumours the surgically cut out… very unpleasant and it hurt a lot as the hand doesn’t have much thickness to absorb the anesthesic.It turned out I had a rare Non Hodgkin’s Lymphoma called Mycosis Fungoides at stage 2b(the beginning of the advanced malignancy and no longer indolent)all that time but to be honest I don’t think that they could have done much before and as it was skin damage similar creams like topical steroids and emollients as you’d use for psoriasis and eczema will relieve the symptoms.They say that they can only treat the external manifestation of the Mycosis Fungoides now and not the internal generator of the corrupted cells except by a stem cell transplant but that carries about a 25 percent chance of rejection and death so not a tempting option!
@Kevan7 Hi Kevin thank you for sharing you have had an awful time I hope that as I am under the haematologist for bloods every 3 months they will catch anything before I develop anything as terrible as you have.
I hope you are doing ok now.
I have been looking into it and having thrombocytosis for a long period of time can increase more serious conditions.
Hopefully they can rule out any serious conditions and give me something to thin my blood.
Strangely they never detected my Lymphoma via bloods it by by a biopsy of a tumour.I’d have thought as leukemia, lymphoma and myeloma are blood cancers you’d pick them up in the blood but seemingly often not!
Hi @Kevan7, thank you for sharing your experiences, and I’m so sorry to hear about your diagnosis and that you’ve been through what sounds like an incredibly difficult time. May I ask how you’re doing now? If you’d find it helpful to talk through things at all, please do keep our support line in mind- we are here to support people affected by all forms of blood cancer (0808 2080 888).
In case it’s useful at all, our colleagues at Lymphoma Action have information about mycosis fungoides on their webpage here - Lymphoma Action | Skin (cutaneous) T-cell lymphoma (lymphoma-action.org.uk). Fortunately, what you sadly had to go through is rare. About 3 out of every 4 people have early-stage disease when they are first diagnosed.
There’s some info on that webpage around treating the symptoms of this condition. As you mentioned, stem cell transplants are sometimes an option for some people, namely young, fit patients who have advanced mycosis fungoides and haven’t responded to other treatments might have a stem cell transplant using cells from a donor. As you said, this treatment pathway comes with risks, but stem cell transplant success rates vary widely depending on several factors, and due to improved treatments and better understanding of what makes a good match, patients are generally living for longer and are able to cope better with side effects such as Graft-versus-host-disease.
We hope you’re doing well, Please don’t hesitate to let us know if you’d like to go over any of this, @Kevan7, and we’d be happy to go over things with you.
Thanks for asking I haven’t rung the hospital yet as I’m waiting for the 2 weeks that the NHS website says to allow lymph nodes to go down themselves(they haven’t!) and that’s up tomorrow so I’ll ring them on Monday.You are correct that most people seem to have early stage,1a to 2a, Mycosis Fungoides and they think that up to 30 percent,depending on the source you read, progress to advanced stage,2b to 4b.I don’t think that they really know what the progression is as it’s only 4 to 6 people in a million.By a really weird coincidence given how rare it is my sister had a friend in the USA who had it and unfortunately expired last year from stage 4a of the malignancy but I don’t know how long he’d had it and how long it took to get to 4a.