Hi all i came across your forum looking for answers i am a 35 yr old male for a few years i got brushed off as a slightly low platelet count was normal, meanwhile the fatigue i was feeling was getting out of hand.
Years went by getting more and more tired having it blamed on lack of motivation ect, i finally found a lymph node in my neck and got it scanned and it came back as normal after a blood test showed slightly elevated LDH at 403 and low platelets at 107and potassium at 3.4
I have now had a repeated blood test done, a year later due to the fear of covid and shielding due to me having copd, and it come back as RBC 4.36 platelet count 119 and LDH at 438. and the potassium is back to normal at 3.8
I’ve been told now that they could be looking into possible blood cancer and i don’t know what to do i guess i am looking for anyone else who had similar results and what there outcomes where, i have been fast tracked and have an appointment on the 11th of may with a haematologist i am scared stiff and the panic attacks are getting worst my only experience with cancer was my step dad who due to bad advice on medication went from fighting fit to death in 9 weeks so i keep thinking my body’s going to shut down i am so scared and reading all your brave peoples post is truly inspirational.
My symptoms are:
pain in my stomac under left rib, pain in my back almost like dull numb ache by kidneys, constipation lasting over 6 days at a time.
bones ache, muscles ache and fatigue, sweaty palms and feet and cold hands and feet unable to feel the difference between hot and cold chest plate hurt like the bones when touched and low temp 35.3 then returns to normal.
last thing to note is i have a cluster of lymph nodes never gone down since i was 14 dr says i am a lumpy bumpy person
A warm welcome to this forum @dmcjas22 I am so sorry you’re going through such a tough and worrying time. It’s good to hear you’ve been fast tracked so hopefully you’ll start to get to answers soon around whether there is anything going on - would you find it useful to talk things through with us on the support line? We’re only an email or a phone call away on support@bloodcancer.org.uk and 0808 2080 888 if there’s anything we can do to support you.
In case it’s useful for you, we have some information around different tests and scans used to diagnose or rule out blood cancer here - Blood cancer tests | Blood Cancer UK. I’d really encourage you to be open with your GP about the extent this is all worrying you as it’s important they’re aware of how you’re feeling.
We’re here if you need to talk.
I’m so sorry you’re having such a worrying time. You’re going through a lot, with worrying symptoms; uncertain medical evaluation of those symptoms; long periods of waiting for answers, over several years; the terrifying C word thrown in; another illness on top of all of this, plus being ill and vulnerable during a pandemic. No wonder you feel so anxious - anybody would in those circumstances.
I can’t help you with what your symptoms and blood results might mean, as I’m not a doctor, but what I would suggest is trying to get your haematology appt moved to an earlier time. The 11th May is a very long time to wait, with so much anxiety having already built up. Why not ring the haematology dept, and say that the phrase ‘possible blood cancer’ has been used, and you are extremely worried now, and you don’t think you can wait until 11th May without your mental health really suffering. You never know, they might be able to do that.
Any wait is still obviously a long time to wait when you’re worried. All of us here have had nerve-wracking waits at some point, and we completely understand the anxiety of it. Strategies to combat some of the anxiety might be to: Keep as busy as possible, so that you’re not thinking about it 24/7; talk to friends/family about it, if that helps; ring the Helpline here to discuss your concerns; get absorbed in something you find rivetting, like a book, or a Netflix series or a game; listen to meditation or guided hypnosis tracks (on YouTube, perhaps) about reducing anxiety; take some exercise, because even a quick walk reduces anxiety levels, particularly if immersed in Nature; and be good to yourself - eat healthily, be kind to your body, and enjoy a few treats.
I really hope you manage to distract yourself, and keep reminding yourself when you do think of it, that there might not be anything serious going on.
Please do let us know how you are and how you get on, if you’d like to.
Hi @dmcjas22 a great big welcome I am so glad you have found us, but also hope that you will not need our forum family after 11 May.
We cannot give you diagnosis answers because we are all unique beings with our own personal medical histories and a medical specialist takes so much into account at a consultation.
I think so many of us remember the feelings of being out of control and the worst is the never ending waiting for others and answers. @Alice_BloodCancerUK and @Fullofbeans have given you brilliant suggestions and perhaps the time will give you the opportunity to write down all your fears, questions, your medical history, family medical history, symptoms, medications you might be on etc. because I find that I am asked them over and over again and my mind goes blank.
Yes, distractions are so good for me too and it is music, Pilates, reading, puzzles, tv or films that I will enjoy, nature, being nosey etc. !!
If you think you might like help with your anxiety it might be worth seeing your GP for what local services there are. Very personally I found that counselling helped me.
Friends and family and laughter work for me.
Look after and be kind to yourself and please keep posting
thank you so much for your replies, you are truly inspirational and so brave i hope i also do not need you guys after 11th of may but if i do i am glad to have found you,
i messed up a little, i don’t have an appointment with haematology its with ent so i think that’s good news i hope.
the letter was the ent specialist asking haematology to look at my bloods so that’s where i got confused.
Either way the uncertainty is overwhelming but i love training in the gym i have now ceased smoking after a very bad 40 a day habit and feeling better for it i just want to hit them weights again, and be healthy regardless of the outcome thank you so much for your advice i love self hypnosis and meditation ive been practising it for years but those anxiety attacks come with out warning no amount of meditation can stop them at the time they hit but great for when they go
I am not surprised that you got confused, you are probably still in shock.
I am glad that you enjoy training at the gym, some of my Pilates dvd’s use weights (although I am a light weight in more ways than one).
I am impressed that you have ceased smoking, I know it is not easy.
I am pleased that you find self hypnosis and meditation helpful.
I find my mind gets the better of me often, in the early hours of the morning, and in the words of the Mama and Papas song ‘the darkest hours are just before dawn’.
Take care and I think you are doing brilliantly
Well done for giving up the smoking, @dmcjas22 - that’s a huge achievement. And so is the weight lifting! It sounds like you’re doing so much to maximise your health.
I’m sorry you have full-on panic attacks - I’ve heard they are way beyond anxiety, and really are scary. Yes, I can see it would be hard to prepare your mind to control them - they come out of the blue and hit hard.
Good luck with your ENT appt. Yes, let’s hope you won’t need to speak to anyone here after all your tests.
But if you need support in the meantime, you know where we are.
hey sorry i havent been replyed sooner other than feeling very run down and tired i have taken a chilled day, my friends have been amazing and have refused to believe that the big C word is the only option for me and came across some amazing information.
in 2019 i lost my nan a truly wonderful and close woman to me in my life my world went upside down and i felt like a part of me died inside, so i stoped eating and started smoking (chain smoking) i would have quater of a plate of food and a couple of biscuits now and again and spend most my days lying on my back in my room depressed very very inactive,
Well my friend believes i am ticking more boxes for malnourishment that the big C word, turns out it can also drop platelets and raise ldh in the blood even drop RBC and i have most of the symptoms associated with it too.
so i have asked my gp for extensive blood work and i will be getting that on the 4th of this month so hoping i have some good news for you guys how is everyone and once again thank you for just being here
Really good to hear from you, but I’m really sorry to hear you lost your nan recently- 3 years ago is no time, in terms of grief and still feeling the rawness of loss. And then you’ve had the pandemic isolating you, early in the grieving process.I’m not surprised it’s still hitting you hard.
Have you spoken to your GP about your depression? It’s hard to eat properly when your mood is low. Perhaps some talking therapy or anti-depressants would help you? Lots of us go down that route to get better. I’ve had both talking therapy and anti-deressants in my time, and they both helped considerably.
It sounds like you’ve refound some motivation though, with stopping smoking and getting back to the gym, and talking through your worries with your friends and us here. That’s a really good sign. Are you managing to eat a little more now, and are you including plenty of healthy foods? I hope so. It would be tough on your energy and body if you’re not, when you are going to the gym regularly.
So glad you’ve got blood tests organised in the near future - hopefully the results of those can either put your mind at rest or show up something that’s easy to sort out.
I’m fine thanks. I’ve had a few bits of good news regarding my stem cell transplant recovery, so I’ve got a spring in my step. : )
Yes, as @Fullofbeans says @dmcjas22 good friends are priceless and if you are exercising perhaps you do need a healthy diet otherwise you will feel very run down and tired and it will completely deplete you of your internal equilibrium. We are such complex beings. I think it can also really effects our moods, I loose my ooomph.
I am so sorry to hear that you lost your nan in 2019 and then we went into lockdown in early 2020, it is no time for you to come to any kind of terms with your loss.
Please let us know how you get on with your blood test results, I hate waiting, but perhaps it is worth telling them what your friend has said about malnourishment so they have a good picture of your lifestyle, eating and exercise, food is our fuel.
I will be thinking of you, please let us know how you get on and be kind to yourself.
No need to apologise at all @dmcjas22! I’m so sorry to hear you’re feeling so run down, but glad to hear you have some lovely friends around
Did you have your blood tests yesterday? Hope all went smoothly.
Take care,
Alice
Hi yes i had my bloods taken yesterday but my gp not only hasn’t received my bloods but he hadn’t a clue about what was going on, even though ENT forwarded me a copy of the letter they sent him asking him to advise me on the next actions, so safe to say i was fuming with them i have had a blood test to check my vitamins, because they didnt know what to test, ahwell i get to see ent on the 11th of may so fingers crossed.
Meanwhile i am eating regular holding a steady weight of 10.11 stone i am on complan to bring up my iron and vitimins seeing as i dont think it will harm having them just and case, staying awake a little longer but still burning out if i do a little to much in the day.
@Fullofbeans that is fantastic news @Erica@Alice_BloodCancerUK i am very lucky to have friends like mine my messages have not stopped going with alternatives its quite scary all the other things it can be but comforting to see so many people on a mission i hope they are right i was not kind to my body at all.
What a nuisance, the mix up in communication at your GPs - I’m sure that did nothing to quell your anxiety!
Sounds like a good plan to use the Complan - if you havent been eating much, it is likely to help with getting your nutrition back on track.
It’s such a shame you have to wait so long for your appt, but I hope you can concentrate on the gym and nutrition and getting yourself into the fittest place in the meantime. It may be nothing to worry about, @dmcjas22 - so try not to worry. I know - easier said than done! But I don’t think any of the medical professionals can be worried you have a blood cancer, because you’re seeing the Ear, Nose and Throat people, not the blood or cancer specialists, and they’re testing your blood for vitamin levels, not anything more sinister. That looks very reassuring, on the blood cancer front. But of course, nobody wants anything wrong with themselves, whatever it is.
Ah, don’t be hard on yourself about how you’ve treated your body during your grief. We all have our moments of not being entirely wonderful to ourselves - it’s ironically what we often do just when we should really be treating ourselves well. Us humans, eh? We’re not the most rational at times! But the body is an amazing thing and can usually withstand occasional bouts of mistreatment when we’re at our lowest. And you’re being very good to yourself now.
Take care, and I hope you can focus on positive things in the next few weeks.
Oh @dmcjas22 just when you are obviously feeling anxious you have hit the ‘lack of communication wall’.
As you have realised all you can do is to look after yourself and that certainly seems to be what you are trying to do.
Don’t worry about about not being kind to you body in the past, there is nothing you can do about that now, I have also been extremely guilty of that I can tell you.
I was on a permanent unhealthy diet all my life.
Look after yourself and do nice things to divert your mind.
Well it happened again my body went into shock, shaking and cold as anything hit 35 degrees, got told i would be give blood tests in hospital to finally put an end to this nightmare and nope, instead i was give a urine test which was found positive for a kidney infection.
So been given some meds for that hoping that’s what was causing all the shaking and fatigue sick of been told oh its just anxiety have you tried antidepressants
new side effect since starting the meds is wreching at the the thought of sauces and smells weird as anything lol. makes me giggle
Hi@dmcjas22,oh no poor you ,urine infections are so horrible and side effects from the meds.I totally
Understand having been there with the" shivers n shakes "just have to take it easy while it passes and good idea to use probiotics for the tum, “if it aint one thing its another”
Take it easy
Bannanacake
how is everyone and once again thank you for just being here