Oh @Kitty25 I am so glad that you have found us.
I think that it is very natural to feel terrified whilst being in limbo and not knowing what is happening.
Why not ask why you were not offered a stem cell transplant earlier, I donāt know the answer, but it is a reasonable question.
Waiting and not knowing is a horrible time, please do try and look after yourself and try to do nice things to divert your mind a bit, if you can.
Please do let us know how you get on
4 Likes
Hello @Kitty25 and welcome to the forum.
Iām sorry to hear about your relapse. It must have been very hard to hear the news and again, waiting for results.
@Erica has given great advice on writing down all of your questions. I think itās really important that you ask these as it may help to put your mind at rest.
Please keep us updated on how you are doing. There is always somebody here to listen so please keep posting X
3 Likes
I realised I started a couple of threads but never actually introduced myself!
Iām Caroline, Iām 43 and live in Bicester in North Oxfordshire, comfortingly close to very good hospitals and irritatingly far if you have to get to an appointment in rush hour traffic!
I work in banking in London, and am a rowing umpire in my spare time. My husband is a total petrol head, and also involved in local politics so that spills over into my life too but generally in an interesting way.
Iām no stranger to weird medical mysteries as I also have Charcot Marie Tooth disease (a novel mutation of the rarer kind), and had a subclavian (under collar bone) DVT which resulted in two rounds of thrombolysis and 8 balloon venoplasties a few years ago. And now I get to add a Chronic myeloid leukaemia diagnosis to the pile!
Pleased to be here, and looking forward to being able to give as much as I take in terms of support and so on.
4 Likes
Hello Irina, adding my support here too, so sorry about your relapse, how are things at the moment? Iām also an Acute myeloid leukaemia (AML) patient so I do understand to a degree the fear though I havenāt experienced relapse. Are you getting the support to need from your medical team and the information you need?
3 Likes
Hi I am newly diagnosed with Essential thrombocythemia (ET) and JAK2 positive. I am taking hydroxycarbamide with an initial platelet count of over 700. Apparently my platelet count has been raised for a number of years, but after a possible TIA and as part of pre op checks prior to hip replacements I was referred to a haematologistā¦ After 2 months treatment my level is now at 570 but consultant has advised to increase dosage. And to also consider treatment with anagrelide. I was very reluctant to start treatment with hydroxycarbamide with few crying myself to sleep episodes befor I eventually decided to give it a try. As i have suffered with migraines for some time I am concerned that main side effect of anagrelide is headaches. Has anyone on here experience of this ? Main issue I have at moment is tiredness and of course my hip replacements are on hold for time being. I was due to fly to Vietnam to see my daughter and family but decided to postpone that trip for time being. Has anyone experience of flying long distance with Essential thrombocythemia (ET) diagnosis?
2 Likes
Hi @Whitewitch The timing really is unfortunate for you. As for long haul flying it is worth talking to your consultants.
There is the being on treatment side and also your hip.
A few crying yourself to sleep episodes when considering the unknown is very natural, I think
Also perhaps tell your insurance company to make sure you are covered.
Obviously there is regular exercise on the plane and perhaps exercises sitting down
I hear travel compression socks and stockings are more fetching these days
Look after yourself and please do let us know how you get on
2 Likes
Thank you. yes i have spoken to my insurance company and my consultant. I have postponed my trip for the moment.
2 Likes
Hi Jenji,
My name is Kay. I was diagnosed with a cutaneous T cell lymphoma , with Sezary Syndrome Variant in July 2023 after many years of itchiness,dry skin and redness.My condition was flagged up following a routine blood testā¦.I too had a high lymphocyte count. My haematologist arranged some highly specialised tests called Flow Cytometry , I also had skin biopsies and CT scans to look for internal lymph nodes.
It did take quite a while to establish a diagnosis but once that was made, I was referred to a regional specialist lymphoma clinic.
I am currently having ECP treatment two days every fortnightā¦quite a commitment but it seems to be lowering my white blood cellā¦.
Sezary Syndrome is extremely rare and I must admit that I feel very alone with this conditionā¦if there is anyone out there with the same problem, I would love to hear from you!
In the meantime, Jenji,ā¦I hope all goes well with you and they manage to come up with a diagnosis soonā¦ā¦ā¦these things always seem to take so long to get any answers.
Take care,
Kay.xx
1 Like
Hi Iām John, I celebrated my 82nd birthday in January, having been diagnosed with Acute myeloid leukaemia (AML) last October. Iām on Venetoclax, Azacitadine & Co-Trimoxazole. This has all been such a shock, I was going to the gym for a workout 2/3 times a week in May, feeling tired through June and passed out in the car on 5th July. While in hospital they found I was anaemic so I had a bone marrow biopsy leading to the diagnosis. Would really love to hear from anyone on the Ventoclax injection regime.
1 Like
A great big welcome @Faceache I bet your diagnosis was a shock especially as you were obviously keeping fit.
Blood Cancers seem to know no boundaries.
I hope someone on the Ventoclax injection regime will be able to reply.
I wonder if there is a reason behind your question?
If you would like to talk to the Blood Cancer UK support line their number is 0808 2080 888.
I also attach the Blood Cancer UK details on Acute myeloid leukaemia (AML)
Acute myeloid leukaemia (AML) - what is it, symptoms, treatment and prognosis | Blood Cancer UK
Please do keep posting how you are doing as I look forward to hearing more about you
Hi. Iām Michele, 58, and have always been in great health until June 2022 when I was diagnosed with Diffuse large B-cell lymphoma (DLBCL). I had successful and relatively easy treatment with R-CHOP and radiotherapy but sadly my remission ended in November last year. I started RGDP before Christmas, am now clear and actually currently in hospital for conditioning chemo and final stage of Stem cell transplant. BUT we had to stop suddenly on Day 2 because of excruciating abdominal pain. So far tests for abdominal blockages are coming back negative and I have no idea how we are going to proceed from this. Iāve always had abdominal issues with chemo so the idea of of just waiting for the inflammation to settle down and then try again fills me with horror. I really want to know if there are other non chemo treatment options for me and Iām sure my doctor will tell me in good time. I was so well prepared for STC and now everything is completely up in the air. Is there anyone else out there with severe abdominal inflammation from chemo?
2 Likes
Hi @MicheleMJ I am so glad you have found us but I am so sorry to hear about your excruciating abdominal pain and your horror of the doctors trying again.
Please do keep telling your medical team exactly how you are thinking and feeling and ensure you ask your doctors everything you would like answers to, I need to write all my fears, questions and practicalities down first.
I cannot help you medically, but I just wanted to say that I am thinking about you and please do let us know how you get on. Be very kind to yourself.
Hi - Iām Bryn - actually a female called Brynda after my father, but always known as Bryn. Whenever my mother shouted āBrynā she got two answers and, whenever someone who doesnāt know me heard someone shout my name, they always expected to see a male! But Iām Bryn and am Welsh and a female trying to understand my blood cancer and how I feel. Cancer is a family trait on my fatherās side, itās scary if I think about it, so I try to put something else in my head for a while. I had my diagnosis about six months ago. I keep as fit as I can, walking around a lake most days and now that spring is here, I will be gardening again.
6 Likes
Iawn Bryn AKA @kayspangles! Thatās about the extent of my Welsh, unfortunately, but itās nice to know weāre not the only Welshies here!
Really sorry to read of your diagnosis. A big warm welcome to the forum, I hope it feels as supportive and helpful for you as it has been for me since diagnosis with Polycythaemia vera (PV) last year.
Have a look around the website and check out the information relating to your specific diagnosis if you havenāt already. Looking forward to reading about how you get on. Enjoy that walking and garden of yours!
2 Likes
Hi @kayspangles or Bryn a great big welcome to our forum.
I was also named after my father he was Eric Arthur.
Sorry to hear that cancer is a family trait on your fathers side.
Give yourself time to come to terms with your diagnosis and I found it took me a long time.
@Duncan has given you a great response.
The Blood Cancer UK support line is also there for you on 08082080 888 if you would like to speak to someone.
Walking is also my exercise and I love it as I am rather nosey and I am lucky enough to have some lovely walks around here.
Enjoy your garden, we have downsized to a flat so no more gardening for me!!!
Please do keep posting and be very kind to yourself.
2 Likes
I am Carmen. I am 17. My 1 year old cousin has just been diagnosed with Acute myeloid leukaemia (AML) and is having chemotherapy in Great Ormand Street Hospital. I am very worried about her.
3 Likes
Hi @YouAreAMiracle I am so glad that you have posted, your cousin is so lucky to have you caring about her and your name on here says it all.
You say that you are worried about your little cousin, I expect your thoughts and feelings might be all over the place and all consuming you, if you are anything like me.
Your cousin is being looked after, but who is looking after you?
Perhaps everyone deals with a diagnosis in very different ways, there is no right or wrong.
You are now part of our forum family, I have have found that this is the one place that I can really say how it is for me and I really hope you will feel the same.
The Blood Cancer Support Services are also there for you on 0808 2080 888
Please do keep posting as I really look forward to hearing more about you and your cousin.
2 Likes
Thank you thanks @Erica . Diagnosis came just before Easter, everyone thought she had a cold. Not meant to tell people about it.
3 Likes
Hi. If anyone could please guide me to any articles, websites, or any information on Acute myeloid leukaemia (AML) in infants. Or Chemotherapy in infants. Or if anyone has first hand experiencing in Great Ormand Street Hospital (kids hospital in London that my cousin is in) That would be really helpful because Acute myeloid leukaemia (AML) is quite rare in children and I am trying to gather all available knowledge on what my cousin has because I havenāt received much information from my parents ect.
Thanks all and best wishes,
Carmen
4 Likes
Hi @YouAreAMiracle and welcome to the forum.
Iām really glad you joined our forum and are able to ask questions and get support from our members. Here is some information that may be useful: Childhood acute myeloid leukaemia (AML) - what is it, symptoms and treatment | Blood Cancer UK
Remember the support line is there for you to X
3 Likes