Here I go again,it sounds like I am moaning yet again. As I have mentioned before atm I am Hydroxycarbamide but,due to restart Azacitidine shortly.
For two days I have had awful liver pain it feels enlarged and aches. Also my Spleen is giving my pain too. Is anyone else suffered this? I am not ill as such just very uncomfortable.
I don’t like bothering my team as I said apart from pain and discomfort I am not ill.
Thank you all for any advise,I find this forum so useful.x
Hello @Bonny16
Thank you for taking time to send in your post
Firstly, you’re not moaning, please don’t ever feel that you are. You are always welcome to post on the forum, no matter how much you my feel you are moaning or how trivial you may feel the question. It is good to hear from you.
I’m hopeful you have engaged with your medical experts, GP or NHS 111 for advice and guidance. They are the experts and I am confident they will be able to guide you and talk through your concerns.
Don’t forget, if you prefer you can always speak confidentially with our support services team for information and support 0808 2080 888.
Please take good care of yourself and do feel free to let us know how you get on
Kind regards
Mike
I would encourage you to flag issues to your clinical team @Bonny16
The message I got on day 1 of diagnosis was to flag up anything new or out of the ordinary.
That way they can decide best course of action if any is needed.
I remember calling the Cancer Support Helpline a few times which got me seen at Out of Hours GP service and even a team of paramedics one time. I got a little red card with the number.
Before I called I always did a check on temperature as that’s often first indicator that everything isn’t right.
Hello @Bonny16, I do want to echo what Mike and Duncan have said: two days of liver and spleen pain, in the context of your Chronic myelomonocytic leukaemia ('CMML') and with Azacitidine on the horizon, is exactly the sort of thing your team needs to know about. I understand not wanting to feel like you’re making a fuss - but they genuinely need a full picture of how you’re feeling before you restart treatment. As Duncan says, that’s what the red card number is there for.
We also have some information about CMML symptoms and treatment on our website if that’s useful, and you can always reach our Support Services team by email or free phone at support@bloodcancer.org.uk or 0808 2080 888 (option 1) if you’d like to talk things through with our specialist nurses (who are wonderful!).
Take care,
Ceri - Blood Cancer UK Support Services
Hey @Bonny16 you gave me a flashback to a conversation I had pre-diagnosis. My GP had said ‘it’s fascinating because we think you have cancer but we don’t know where it started’ and as I relayed this bizarre and shocking news - I said to my friend ‘I’m sure they have all of this wrong, I laid a patio I pulled something, it’s only a bit of pain - it can’t possibly be cancer’.
So I’m not suggesting it’s an additional cancer of course, but it’s so important that you recognise the importance of pain. We are accustomed to ignore pain and just get on with it. Pain is the way our body says help! It lets you know when something isn’t right. Please talk about it to your team xx
And please- you are absolutely not moaning, be kind to yourself - we’re all here for you xx
Thank you for feedback am on it, I do dislike keep contacting my team, I think they have enough to do. I have a appointment nxt Tuesday so will hopefully get some answers and advise on how to treat this. You are all so love. Thank you x
Aw @Bonny16 I’m sorry you’ve been in pain.
Just wanted to add that I’m sure your team would actually love to hear from you, it is their job and specialism after all and working with folks like us is what they’ve trained to do.
Another way to see it is that by sharing with them how you and your body are responding to treatment they can better advise others in future with similar symptoms and side effects.
Do please let us know what your specialists suggest, you don’t need to be in pain.
Hi @Bonny16, I wanted to check in on how you’re doing?
Hello, I eventually saw a doctor, liver & spleen was enlarged had infection. Finished treatment now, feel loads better.
I really dont understand bloods not too bad but symtoms awful. I really dont understand how Chronic myelomonocytic leukaemia ('CMML') can make you feel so ill but bloods not too high.
Once I am given antibiotics I feel a lor better, but Steroids are the best in my opinion.
I also dont understand lymph nodes swelling up and down in neck and under arms, it definitely gets me down at times.
Trying to focus on the positives bloods are not too high.
Thank you once I write it down it definitely helps me to concentrate on taking one day at a,time. X
Oh @Bonny16, I’m really glad to read that you feel loads better! Such good news. So it was an infection, sounds horrible. You knew exactly where the pain was too, I would award yourself a treat of your choice for knowing yourself so well!
As for the symptom side of living with Chronic myelomonocytic leukaemia ('CMML'), have you found others around the forum who have shared their understanding of it? I know there’s a lovely thread of people who live with Chronic myelomonocytic leukaemia ('CMML'), maybe you could ask if they have experienced lymph node symptoms: Recent diagnosis CMML
You know, I occasionally get slightly raised lymph nodes. They can be aggravating, can’t they, like a bruise that’s being pressed. I first started noticing them the year I was diagnosed with Polycythaemia vera ('PV'), but with me I think it’s a sign of being a bit under the weather. If I was slightly more medically inclined I might look into why lymph nodes become inflamed to begin with, what can cause that inflammation, and if there are ways to minimise inflammation.
Glad you’re on the mend @Bonny16, I hope you find answers to your queries. Don’t forget you can save up non-urgent questions for when you see your specialists, I always have a long list!
So happy to hear you that you got the right treatment and don’t have that pain anymore @Bonny16 xx
Thank you Duncan for your reply.
I always feel that I am complaining about my Chronic myelomonocytic leukaemia ('CMML').
Although I call it liver pain its more like my liver swells and I cant sit forward.Its so uncomfortable. I kept a,diary of foods and drink,No alcohol but cant understand what makes it happen. Neither can my team. But they dont know why my white blood cell goes through the roof to 100 at times. Or why I had a Spleen infarc?
Chronic myelomonocytic leukaemia ('CMML') is so rare I think they are learning too.
Not many Chronic myelomonocytic leukaemia ('CMML') on here with CBL and 2xTet2 gene. I hope more people will join.
Yes Lymphatic swelling is uncomfortable but I know the signs and start antibiotics early now rather than wait and see how high temp goes.
I call most of my symptoms hit & run as sometimes they only last a few days and by the time I have blood tests they are only slightly raised.
I hope your treatment is going well, and its lovely and to hear from you. X
Good to hear that infection of spleen has been dealt with and you’re feeling better @Bonny16
Take care
You’re very welcome @Bonny16, and please don’t worry about whether you seem to be complaining! Honestly, it’s kind of amazing that we forum members and our loved ones don’t moan constantly, wouldn’t you say?!
Hope you don’t mind but I had a look around the forum for people living with the same gene mutations and you’re right, I couldn’t find anyone with CBL and TET2. Do correct me if I got those wrong, it’s all a bit like Scrabble with these gene mutations!
However I found a new forum member who has the TET2 mutation, should you like to introduce yourself here: MPN/MDS (u) Overlap Syndrome with TET2 ,Jak2 ,DNMT3A, SRSF2 , AsXL1, MPL variants
Here’s another forum member with TET2: Bone marrow biopsy and Pet scan
And one more person with TET2 as well as Chronic myelomonocytic leukaemia ('CMML'): Diagnosed today with CMML - #7 by CathyP
Don’t know if your doctors have mentioned this but my haematologist told me that our spleens can start to produce blood cells with myeloid blood cancers like Chronic myelomonocytic leukaemia ('CMML') and Polycythaemia vera ('PV'). That increases their size and makes them feel uncomfortable. My spleen ached pretty badly after I started treatment, but faded away with time. I hope your pain stops soon @Bonny16.
Oh and so true what you said about our specialists also learning from our rare disorders, such a good point. Another reason to share our symptoms with them @Bonny16.
Thank you Duncan, I did touch base with CathyP. I can relate to some of her symptoms. It seems from her post she has a great team that keeps in touch regularly which is great.
At the moment I am very confused with the discomfort of my Swollen liver. My bloods are mildly increased but, my discomfort is a times awful,I feel at times so full and unabled to eat. Not knowing why this happening and how I can help myself is a nightmare. It’s been going on for over two months now..
The positivity I take from it is if my bloods are okish it must just another symptom.
Anyway, we keep fighting to enjoy another day with our loved ones and keep smiling. X
.
That’s great that you reached out to @CathyP, I know it’s helpful for me to hear from others around the forum who share my diagnosis.
It’s not my place to suggest what might be happening with your liver discomfort, but am I right in thinking it was a few days ago you started treatment for it? I wonder how long it takes for the medicine to help bring down the discomfort, did your doctors say how long to expect? Is it easier to eat softer foods right now to keep fuelling your body’s energy needs, like soups? I’d really suggest letting your doctors know about how you’re feeling uncomfortable. You don’t need to feel this @Bonny16.
Do hold onto the good news about your blood cells being okayish, I do the same! That’s what our doctors look to first, after all, so they must be important.