Hi, I’m Jon, 67, male.
Was diagnosed with Myelodysplastic syndrome (MDS)/MPNoverlap in May this year. Tracking deterioration in bloods as per the pic. Still perfectly fit but will be advised chemo once Haemoglobin is below 100 etc.
The Myeloproliferative neoplasms (MPN) (Essential thrombocythemia (ET)) is losing out to the Myelodysplastic syndrome (MDS) hence platelets are perfect as they head south from far too high to however low they end up going. I have 3 mutations:ASXL1, EZH2 and SF3B1 and am low/intermediate risk having monthly blood tests and probably a second BMB in a couple of months. Very interested in nutrition, vitamins and alternatives to what looks like a pretty grim road to travel. Other history- discectomy 13 years ago, atrial fibrillation 10 years ago, lichen sclerosis 8 years ago, then in 2022:: suspected breast cancer- was a small benign cyst , itchy scalp, and microembolism in toe leading to referral to Haemotology early 2023. Wasn’t overweight and have lost a stone maybe due to 16/8 intermittent fasting and reducing alcohol significantly.
Hi @Jono I responded to your other post.
As I said in that post we sure are all very complex, unique beings and that is why you will find we usually refer people to their medical teams with medical queries as they are the ones that know us holistically.
Be kind to yourself
Evening!
I am new to this and hoping i am posting in the right forum! My Dad aged 79 - 80 in October was diagnosed with multiple myeloma in January this year. Like many of you this has been a roller coaster and i am learning fast about the condition and how to help him. He has lived on his own for the last 6 years since our mum died and has always been exceptionally active so this has come as a complete shock. He is in partial remission which is positive - however, the one thing that is extremely debilitating for him and us to see is how fatigued he is. Every time he eats he falls asleep or needs to lie down, and just doesn’t have the energy to do very much. Though out the day he will regularly just lay down for a short rest, but even after that he is still exhausted. His last chemo was early June. From researching what i can, it does appear that chemo can take a long time to work its way out, but does anyone have any suggestions or ideas that i can suggest to try and give him just a little more energy which i know will make him feel better!
On the plus - my daughters and i are running the Royal Parks Half Marathon for Blood Cancer in October this year! Just nice to be able to make just a little difference!
Keren xx
Hi @Keren842 a great big welcome to our forum and you have posted in exactly the right place, although anywhere would have been fine. The important thing is that you have posted.
Thanks for setting the scene so well and ‘roller coaster’ is certainly what it is.
I think multiple myeloma, and most blood cancers and treatments do really take it out of patients and this is emotionally, medically, psychologically, physically and practically.
This experience also takes it out of the family members too.
Your dad’s body has been through a lot with chemo.
It is a lot quicker to deplete our batteries, than to fill our batteries back up.
Also age is a factor.
Fatigue is not just feeling tired, it completely wipes us out, trust me.
Personally I think it is just naturally involving your dad in short family events, this can even be virtually. This is just to take him out of himself for a while.
I expect he will be having regular medical tests and check ups.
If your dad would be OK with you attending and talking during his check up you could say exactly how you see your dad.
Yes, on the plus how impressive it is that you and your daughters are running the Royal Parks half marathon, thanks for fundraising and making a difference.
Look after yourselves, all of you and please keep posting
Hi Erica
Thanks for this. Since dad was diagnosed early January, I’ve attended every appointment with him - just to help him and my family understand how multiple myeloma works! I am learning very quickly about the different stages and all the medical terms! This week, dad has come to stay with me and my family for a couple of weeks, as we live close by and to try and give him a break with some additional support. The local haematology unit have been good, with support - it’s just trying to find a way to help him with more energy! I am hoping it improves over time!
Thank you!
Hi, I’m Christine. I’m 76 & was diagnosed with smouldering Myeloma in July & am currently on “watch & wait”. I’ve found it quite difficult to come to terms with the whole scenario, as I had no symptoms & was diagnosed following general blood tests ordered as a routine check up by my GP. I do feel confident that I’m being monitored. The PET scan showed up an unrelated issue - possible ovarian cancer & following an MRI/CT pelvic scan, I’m now facing surgical investigation - more than likely a hysterectomy because scar tissue from 3 C-sections could prove a barrier to keyhole surgery. I suppose I should be thankful that both the Myeloma & gynae issues were discovered by chance, and most of the time I am, but nevertheless, it’s quite difficult to remain positive & not allow stress to affect my wellbeing, though I’m trying my best to take it a day at a time & practice mindfulness & continue to enjoy my daily walks that do wonders for my metal health.
Hi @Chris47 and welcome to the forum.
Wow - that must me such a lot to take in and I can imagine it’s all very overwhelming.
Lots of the members on here will be able to relate to what you describe, especially the effect on your well-being.
I had no symptoms when diagnosed with lymphoma, again, just by chance. I’m also on watch and wait and it can be a hard thing to get your head around.
It’s great that you are keeping up with all the things that help you. My advice is just to take it day by day. Emotions will be up and down and you just need to go with it.
Have you got a good support system around you? I’ll post the link to the support line as well.
Please keep posting. You are never alone on here and we are here to support you throughout X
Hi @Chris47 and a great big welcome to our forum.
Wow, you have had a double whammy and shock and so much to take in.
However you are in the right place if I may say so.
Quite a few of us were diagnosed when having tests for something else.
I was diagnosed after having a gynae op 19 yrs ago with another blood cancer and I have always been on watch and wait (active monitoring). I am now 73 yrs old.
I had a keyhole hysterectomy about 7yrs ago and it was the best thing I ever had done.
I really realise yours will be a far bigger operation and recovery period.
Please don’t be hard on yourself as 2 diagnosis takes a long time to come to terms with.
I always say my emotions have been on high alert since my diagnosis and I can be fine one minute and in tears the next.
I don’t deal with what personally stresses me well either, it really fatigues me.
As you I know the theories of a day at a time and mindfulness, but I often lapse.
I am also a great daily walker and I agree with you that it does wonders for my mental health.
@Nichola75 has given you details of the Blood Cancer UK support line if you need them and I will give you a link to the Blood Cancer UK link to mind and emotions Blood cancer: mind and emotions | Blood Cancer UK
Be kind and really look after yourself and please keep posting as I would like to hear more about you
Hi Nichola75 thank you so much for your words of encouragement. It is a comfort know that there is brilliant support on this forum.
Hi Erica, what a lovely welcome to the forum! I really feel I’m amongst kind and supportive people. Everyone is trying to cope with varying health issues but aiming to live life as fully as possible. I am a great believer in the power of positivity, but I have to admit that for the last few months I have been on an emotional roller coaster ride, so I will definitely check out the link you’ve given me.
Hi @Chris47 I just wondered how you are doing now?
Look after yourself
I am Sarah and I am 22 years old. I am currently looking for a diagnosis. I have had Leukopenia for the past 4 years (possibly earlier), and recently I developed a macrocytic anemia.
I am very uncertain and scared and feel like doctors don’t consider serious diseases because of my age.
But this forum has been very helpful so far 
a great source of support!
Best wishes to you all!
Love, Sarah
Hi @SarahD1702 I have also read your other post.
Remember that you have your forum family to support and surround you.
Have you anyone that can accompany you to appointments, I know that helped me and I am aware your next appointment is not till February.
The Blood Cancer UK support line is also there for you on 0808 2080 888
Sending you virtual hugs xx
Routine blood test in 2018 revealed out of range white blood cell count of 26. Two days after the test I was diagnosed Grade A Chronic lymphocytic leukaemia (CLL) by hospital consultant and placed on 6 mthly blood count monitor. No symptoms and feeling like a fraud but pleased to receive appointment with consultant on Wed after Oct white blood cell of 83. Physical examination found small lymph node swelling in neck. Now waiting CT Scan that is booked for this coming Sunday.
Hi @Horsetrent a great big welcome to our forum family from a fellow Chronic lymphocytic leukaemia (CLL)’er
I was diagnosed with Chronic lymphocytic leukaemia (CLL) 19 yrs ago and I have been lucky enough to be on watch and wait (active monitoring) like you have been on.
You show the value of it as it quickly picks up any anomalies or changes.
I know I have felt a fraud in the past and that I should not be on this forum etc.
I do get fatigue but manage it.
What I have found is that I share with many others on here similar thoughts and feelings like anxiety before and during all tests, results and appointments.
Please do let us know how you are doing and I look forward to hearing more about you.
Take lots of care
Hi Erica, thank you for your msg.
My appointment on Wed marked exactly 5 years since my diagnosis and the only sign of Chronic lymphocytic leukaemia (CLL) has been the xl spreadsheet on which I record my blood test results. So no sign of any symptoms in that 5 years and I’d not felt the node in my neck myself until my consultant felt it on Wed. So will await the CT results from the check on Sunday with a lot of interest.
I play a lot of golf and I’m a biker having ridden the NC 500 in Sept. I got back into biking 2 years ago having given up by selling my last bike in 2005. At 78 I’m probably a little late getting back onto a motorcycle, but I just love it. My wife of 57 years next April used to sit behind me, but not keen now.
Horsetrent
Hi @Horsetrent I am a 73yr old girl who enjoys walking we are lucky enough to have a towpath and a few parks of differing sizes nearby.
I am also a Pilates girl, it has saved me and my back.
I love music an eclectic mix from the 60’s till now.
If you are interested there is a Friday Jukebox thread on our forum. Someone posts 2 random words on a Friday and we all come up with our 2 songs, preferably with their links.
Enjoy your fresh air too.
Hi everybody, I’m Sue and I’ve just started as a forum support volunteer. I wanted to give something back after my Acute myeloid leukaemia (AML) journey. Diagnosed in Feb 21 after about 4 months of not feeling right, various symptoms that weren’t tied together so a late diagnosis. Severe tiredness, pinprick rash, horrific bone pain in shoulders and spine, moments of dizziness, confusion etc. Initially 5 weeks in hospital undergoing 1st bout of Acute myeloid leukaemia (AML) 19 trial chemo. 56 chemo in total over 4 rounds lasting 6 months. Remission reached Sept 21 and then a long recovery period. I still have days now where I feel so tired or fatigued I believe is the proper terminology. I believe my positivity throughout my treatment helped me so much after all being in isolation, bald, unable to walk you name it, I think I decided to see a humorous side to it all which certainly helped. So sending positive thoughts to anybody who is suffering and I will do my best to help.
Hi @Suenew1967 and a huge welcome to the forum 