New here? Feel free to introduce yourself here 👋

Oh @Chantelle3 you are certainly not a fraud on here.
Perhaps it is natural to worry as long as it is not all consuming your life.
I have answered what I would do about your medical question in your other post.
Yes, blood tests do make me anxious too.
Be kind to yourself.

3 Likes

As @Erica said. You are definitely not a fraud and I’m glad you posted.
Hopefully others will be able to share their experiences.
It must be hard being left to your own devices. I have copied I’m @BloodCancerUK_Nurses to see if they can help :blush:

3 Likes

Hi @Chantelle3,
Thank you for reaching out to us. Your concerns are so very relevant and please never doubt yourself for asking questions. We know how difficult it can be living with monoclonal gammopathy of unknown significance (MGUS) and how much uncertainty it can bring. Therefore i would encourage you to dip into any thread you feel is relevant in order for you to gain as much support form others as possible.

As you will be well aware of- paraprotein levels can rise and fall in monoclonal gammopathy of unknown significance (MGUS) – this is normal. However, if there is a steady or large increase in paraprotein or free light chain, or if you develop symptoms, it is likely your doctor would want to run further tests. It’s important to remember that your current & most recent increase does not define what will happen in years to come. monoclonal gammopathy of unknown significance (MGUS) can be much more complex than that and it can really be difficult to predict where your protein levels will be in the future.
We appreciate how challenging it can be to live with monoclonal gammopathy of unknown significance (MGUS) but it is important to remember that only 1% of cases will progress to a Myeloma.
For additional support & reassurance never be frightened to talk to your doctor further your blood results particularly if you have specific questions.

Alternatively Chantelle, do always know that our helpline is very much here for you to talk things through - 0808 2080 888.

Best Wishes, Lauran

8 Likes

Thank you so much for you kind words.

2 Likes

Thank you, @LauranBloodCancerUK. It’s so very kind of you all to come back to me and for your kind words.

5 Likes

Hi My name is Irina, I was diagnosed with Acute myeloid leukaemia (AML) with RUNK1 mutation in June 2023.
After 4 cycles of aggressive chemo last cycle finished in December 2023, I find myself in relapse a few days ago. I am waiting for my bone marrow results in mid March, after that I hope to find out what the next steps in my treatment will be. I am very much hoping that at last it will be stem cell transplant. After reading the Blood Cancer UK stem cell transplant brochure, I wish I had been offered this much earlier in my treatment. I am terrified that it is too late for me now. Best wishes to you all.

4 Likes

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 don’t 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.
I’m 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 it’s 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!

I’m Caroline, I’m 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.

I’m 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? I’m also an Acute myeloid leukaemia (AML) patient so I do understand to a degree the fear though I haven’t 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 haematologist… 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 test….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 fortnight…quite a commitment but it seems to be lowering my white blood cell….
Sezary Syndrome is extremely rare and I must admit that I feel very alone with this condition…if there is anyone out there with the same problem, I would love to hear from you!
In the meantime, Jenji,…I hope all goes well with you and they manage to come up with a diagnosis soon………these things always seem to take so long to get any answers.
Take care,
Kay.xx

1 Like

Hi I’m John, I celebrated my 82nd birthday in January, having been diagnosed with Acute myeloid leukaemia (AML) last October. I’m 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. I’m 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. I’ve 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 I’m 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 - I’m Bryn - actually a female called Brynda after my father, but always known as Bryn. Whenever my mother shouted ‘Bryn’ she got two answers and, whenever someone who doesn’t know me heard someone shout my name, they always expected to see a male! But I’m Bryn and am Welsh and a female trying to understand my blood cancer and how I feel. Cancer is a family trait on my father’s side, it’s 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! That’s about the extent of my Welsh, unfortunately, but it’s nice to know we’re 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 haven’t already. Looking forward to reading about how you get on. Enjoy that walking and garden of yours!

2 Likes