Hi @AngelaB, thank you for taking the time to share what youâre going through. It sounds like an understandably difficult and stressful time for you. Itâs awful being in pain all the time, and waiting for referrals is not easy. Just like Erica has said, if youâd like to talk this over or need a bit of support, please donât hesitate to call our support line on 0808 2080 888. We can also talk you through where to get further support, if you like, as some people find counselling support (for example) helps them with difficult symptoms or feelings. You may wish to consider seeing the GP (or another GP?) for more support if your symptoms are not settling?
Hi all, just wanted to introduce myself.
My Names Evan. I am 27.
Had a previous blood clot in my left leg (caused is suspected to be sedenatary lifestyle, no cancers or other causes found at the time) that has left me with post-thrombotic syndrome
I was undergoing blood tests for a suspected fatty liver (Now Confirmed) when I found out that my IgA Level was at 4.9 g/l, rest of my immunoglobins and bloods were normal except for C-reative protein and LFTâs (C-reative has gone down now and I was suffering with Phlebitis at the time). I looked up stuff on Google and was scared until I had a conversation with my Doctor, who wasnât worried about the result and that they would just monitor it. I felt more releaved after that but now I am feeling scared again and thought I would reach out on here like I did on the British liver trust chat page as that seemed to help calm me down a bit.
Hi @Elloyd27 a great big welcome and I am so glad that you have reached out to us.
gosh what a convoluted medical history you have, each diagnosis I suspect a shock and scary for you.
Yes, I think your doctor is probably more reliable than âDrâ Google.
Also a lot of diagnosis means just monitoring.
As for calming you down, perhaps your feelings are quite natural, and know to so many of us and it will take you time to sort everything out in your mind.
I was diagnosed 18 yrs ago and I still get anxious before and during all tests and medical appointments.
That is why I have to write my list of symptoms and questions before appointments, my mind goes bland when I walk into a medical building.
Perhaps you might like to talk to your GPâs about your fears.
I also needed some counselling help and if you think that might be something you would like to explore perhaps your GP is your best starting point.
However this forum I have found is a good place to share how it really is for you and if you would like to speak to someone the Blood Cancer UK support line is there for you
Perhaps the best thing you can do is to really look after yourself and be ever so kind to yourself, I look forward to hearing more about you.
Hello everyone I am looking forward to joining this group as a forum support volunteer, being part of this caring and friendly team and being able to offer what I can to support the invaluable work of @BloodCancerUK.
A little about me I was diagnosed in 2019 with non Hodgkins follicular lymphoma. Very unexpected, I was very active at that time a daily runner. What I thought was indigestion was a large mass compressing my organs. Nine rounds of rchop and rituximbab maintenance later, I remain with a residual but stable lymphoma. Long may it stay like that.
My running is no more but I now am very much into yoga , my allotment and keeping chickens.
I am very much looking forward to giving back and helping others through this forum as I feel this helps me as much as it does you . Best wishes to you all x
Hi@AngelaB ,welcome to the forum,
I am sorry to hear that things are a bit unknowing for you just now.You are right when you say that MGUS should not cause problems .It is usually discovered looking for some reason why symptoms are there.I was screened by the Neurologist as I had neuropathy .I also have osteoarthritis which came on suddenly so I can appreciate the pain you are having and feeling low.I hope the pain releif works for you so you can feel a brighter.I got a lot of help and support and still do from www.versusarthritis.org they have a support line ,leaflets and videos for exercise.I am afraid its a case of exercise exercise when you least feel like it ,but it works .BCUK have some good meditations on their web site and www.myeloma.uk.org.uk have some helpful info on MGUS ,worth a read .I think that is enough for
now Take care
Bannanacake
Thank you for the message Erica. I think i should look at it as having a risk factor with a high chance of it not progressing. I think as well that there is probably more chance of something else getting me as i age, as my mum said, if you read up on everything, you usually find the risks balance out. My Doctor said more or less the same. So i think its a take it as it comes situation.
Also, on another point, I sent an e-mail to the support line.
Theyâve answered back saying the most likely reason my IgA was up singularly was either from a vaccine or infection. I have just messaged them to see whether it could be due to the Phlebitis episode.
Good morning,
Iâm new to the forum but had a question re: Polycythaemia vera (PV).
Was diagnosed early this year & recently experiencing feeling hot under the skin & Fatigue, is this normal & if so any reason why? I have read that it may be my body trying to prevent infection. Would appreciate some advise.
Many thanks Mandy
Hi @Mandyb a great big welcome to our forum, I will copy your post the Blood Cancer UK nurse advisors @BloodCancerUK_Nurses and I think that is a question for your GP, CNS (Clinical Nurse Specialist), if you have one, or consultant as they know your medical history and need to know what is going on for you.
I look forward to hearing more about you so please keep posting.
Look after yourself
Hello @Mandyb
Welcome to the Forum.
Thank you for taking the time to post your experiences, hopefully you will have others share their experiences of symptoms of Polycythaemia vera (PV) too and give you some advice.
Sorry to read that you have been having some new symptoms as well as coping with a Polycythaemia vera (PV) diagnosis.
From a nurse perspective there are several things I would question;
Are you on medication for your Polycythaemia vera (PV) or just venesections?
What are your recent blood counts - has your HCT (haematocrit) level risen, which may be causing the hot skin feeling?
Were these the same symptoms you had before your diagnosis?
Unfortunately, Fatigue is a common symptom and can be caused by many things including disease, infection, stress and treatments/medications. This can be linked to the hot skin feeling, or a separate issue completely.
My previous experience of patients with Polycythaemia vera (PV) was their fatigue was due to increased anaemia due to their treatment and their hot skin was due to HCT levels increasing. To be honest though I havenât ever known these two symptoms together (and being linked).
My advice would be to call your Haematology team, as @Erica has also suggested, to let them know you have these symptoms, as they may want to do some repeat blood tests and make sure itâs not the Polycythaemia vera (PV) causing them, as it could be something unrelated too.
Please keep in touch with us and let us know how you are getting on.
Take care and best wishes.
Heidi.
Hi Mandy
I too was diagnosed earlier this year and suffer from the itching. Generally it a lot worse evenings and nighttime. If itâs too bad I take antihistamine. I hope you get some advice from your team and i personally have found this forum very helpful and supportive.
Just wanted to check in with you and ask how you are.
Did you manage to discuss your symptoms with anyone? Have you had any help?
Thinking of you.
Heidi.
Hi, new here, not sure im posting in the right place?
Got diagnosed with Lymphoma on 1st Dec as an incidental finding ( diabetic liver scan picked up large 7.3cm abdominal mass and after 2 ct scans where mass grown to 9cm so biopsied, was told on 2nd Dec by haematology doc I have low grade follicular b cell nhl and to start chemo in January).
Having PETCT scan on 19th to confirm diagnosis and stage etc then face to face meeting with my lovely haematology doc 3rd Jan.
All been a bit of a surprise really.
Hubby is worried and quiet about it all but I feel pretty fatalistic - it is what it is, cant change it, just got to deal with it.
My concerns are mostly practical and ensuring his life isnt badly impacted when Iâm recovering from chemo.
Hubby lost his sight 2 & 1/2 years ago in middle of lockdown so we have had a lot to cope with in a short time!
As I understand it , the cancer is treatable but not curable though prognosis is good generally speaking - I asked my doc if it would kill me and he said Iâm more likely to âdie WITH it than of itâ - I know everyone is different but that was very comforting to hear.
Do have a bit of apprehension about the chemo side effects etc but again, itâs just fear of the unknown and Iâve got a couple of friends whoâve gone through it recently so I shall pick their brains for tips ( use plastic cutlery is one theyâve given me).
Thanks for this forum, nice to know thereâs others out there who will understand.
Oh @K2K a great big welcome and we sure do understand.
I could have written parts of your post although at my diagnosis, 18 yrs ago, I was being treated for gynaecological issues, and the shock and fear was just overwhelming. It was also at this time of year and I felt in a bubble with the festivities going on around me.
Again I did not see a haematologist till the new year, so left in limbo, not knowing and with a fear of the unknown. I came home and wrote my will and funeral music. Yes, I also thought about the practicalities.
My husband is the âhead in the sandâ type
Yes, my cancer is treatable but not curable too, and I am more likely to die with it than of it.
My life today is good and I have learnt to manage my symptoms and it has given me an opportunity to re-assess my life and what I want to do and with whom.
Give yourself time and really look after and spoil yourselves and please keep posting.
Thanks Erica, nice to see youâre 18 years on.
My haematology doc said he expected to see me well in 10yrs which was good to hear. But as the other dept. had been telling me for months my mass was benign, not cancerous, i am slightly sceptical of what they say now. I wonât fully believe itâs low grade until they confirm on the 3rd jan. My initial reaction to being told it was cancer was âof course it is, just my kind of luckâ !
Mind, Iâm not talking myself into it being worse lol.
The doc said " youâre taking it very well" and tbh I have surprised myself .
I had a few tears on my own on the 1st driving home and I want to get the petct scan results over with as my mind is jumping between the stages but mostly Iâm more focused on the chemo process than the disease right now.
Keeping away from sugar is hard though - I had to put 2 choc oranges in the grandsonâs bags instead of in my own xmas stocking Iâm being good as my doc says sugar levels affects the scan interpretation so Iâd be a fool not to.
Having a blind hubby gives me many other things to think about and in a weird way I think thatâs a help.
I have told family and many friends already and will tell the rest after the 3rd when I will have answers to all the Qs.
I decided straight away I didnât want it to be a hushed secret, I refuse to give it any control over me and though it was hard to say " I have cancer" the 1st time, it got easier with each retelling and now it feels no different to saying I am diabetic.
We had lots of outings and dinners planned before my diagnosis and are keeping to them all, off out in a little while with some military veteran friends for an American Supper style xmas get together. Then off to meet up with other friends at the Blind Veterans UK Brighton centre next week . I plan on enjoying every moment!
Expect Iâll be back here after the 3rd - best wishes to you and everyone for xmas and 2023. X
Oh you speak so much sense and I am a great one for bursting into tears when on my own, my husband doesnât do emotions. I find that my emotions are so easily triggered since diagnosis and I shed a tear really easily.
It cannot be easy with your hubby being blind, I should think that it can be so difficult and complex for you, but also quite isolating and lonely for you sometimes.
I think it has helped me telling most people originally, now I donât so often, the only trouble was to start with most people saw my as âErica with Leukaemiaâ and not just âEricaâ, but that wears offâŚ
Yes, enjoy every moment of your festive celebrations and definitely be on here after the 3rd, we will be thinking of you.
Look after yourselves
Good morning @K2K and welcome to the forum.
Wow, you really have had a lot thrown at you in the last couple of years!
I was diagnosed with the same 5 years. However, I just needed an op and radiotherapy so canât help with any experiences of chemo but I know others on the forum others will be able to share their experiences.
I was told exactly the same by my consultant, which as you said was reassuring but also a bit daunting that Iâd never really be told it had gone away! Iâm currently on watch and wait. Waiting was the bit in the whole journey I found difficult and still do.
Sometimes our family just donât know what to say. I talked to my husband a lot but he was also very quiet at times and it was hard to gage how he was feeling a lot of the time. It may just be taking him longer to process?
Iâm really glad you have found us so early in your journey. We will are all here to listen and support X
Thanks Nichola.
The last 2 years are just the tip of the iceberg! Itâs been a decade of one thing after another, but what doesnât kill you makes you stronger, right? lol.
Yes the waiting is awful. And i know Iâll be a while after treatment before i settle into my own watch and wait. Hey ho. Cant change it. Just got to deal.
I am distracting myself with getting my eating under control - perhaps that will be the one good thing out of all of this as ive struggled with my diabetes, not really taking it seriously though i know i should have.
My doc told me about the sugar making it hard to interpret the petct scan and it was the most serious look heâd had on his face in our whole conversation and that seems to have done the trick!
Itâs a bit of a shame with xmas but ive made sure noone has given me chocs.
So glad i found this forum. Sorry if i ramble on a bit, i like heing able to talk about it and not bore my friends ( dont want cancer to be my only topic of conversation with them lol).
Have a good xmas xx
Take care
Iâm being good as my doc says sugar levels affects the scan interpretation so Iâd be a fool not to.