I hope someone can help, i have had a set of blood tests back and my free light chains kappa iga are still rising and now they have jumped from 39.8 to 42.6 , my doctor doesn't seem worried but has ordered my next blood tests in 6 months time instead of a years time like usual, he said it was because of the unusal symptoms along with the rising free light chains need to keep an eye on me. ok so i don't no what to think should i be worried or not? i dont even no if my doctor is a very good one or not, i think i'm going mad i'm the only one worried no one else even my family....
Hi @chelle151, I do not know anything about blood tests, but I do know the feeling of anxiety when I get the results and something has gone up or down and I do not think you are going made at all.
You could always just contact your doctor again and explain how you are feeling and could they just talk though their decision.
I also know what it is like having none of my family understanding my worry and anxiety. I find it a very isolated place. Perhaps that is why I value this forum so much because it is the one place that I know others will understand how I feel.
How are you feeling about going into lockdown again, I think we might need to support each other through it, take care.
Hello, Sorry If I’m posting this wrong can’t remember how to do it. I don’t post on here very often i’m not very comfortable talking with people and it turns out even on computers! I’m not a very social person, i’m agraphobic suffer with nerves and anxiety,. Anyways i just got a copy of my blood tests from January I got new one tomorrow and app thursday 22nd April. My kappa light chains keep going up there 43.98 and the kappa:lambda ratio is 11.364 is this a bad? My dr said that if they have risen another 2 points by next week i’m in for a bone aspriate. but can you tell me a little about the kappa ratio what does my number me? and when can the dr tell when my mgus has risen to LCSMM level? Thank you in advance Michelle.
Hi @chelle151, there is no right or wrong for posting on this site, it will be moved for you if need be.
You have shown great courage posting on here as you say you are agoraphobic and suffer with nerves and anxiety.
The last year in lockdown I don’t suppose has helped your agoraphobia and anxiety in the longer term and if you feel that counselling might help you there then there are becoming more opportunities. Also if you feel you would like to talk to someone you can contact the wonderful Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk.
As for your medical questions perhaps your medical team might be of most assistance because they know your whole medical history.
I know this might not be easy for you but please let us know how you get on as we all support each other on our forum. Take care.
Hi @chelle151, your so brave to reach out to us but glad you have taken the initial step to get get some answers. Its great that your Dr is monitoring you closely and considering a bone marrow biopsy in order to get a clearer picture of what is going on. Once you have that information you will be better placed to discuss what the implications are. We would encourage you to speak to your treatment team with all the concerns and questions you have around this and the next steps. It may be helpful to write these down so that its clear and you don’t forgot what you need to know to feel in a better place regarding your condition. Don’t forget Michelle, our support lines service is available if you would prefer to chat and discuss what you are going through and how you are feeling. Don’t hesitate to reach out to us.
Hi again, thanks your all so kind and understanding, i’m gonna write down exactly what i want to know from the specialist my appointment is 22nd April, next Thurdsay. i’m trying not to panic but i find myself crying at the most stupid and silly moments for no appararent reason i worried more about my daughter as she lives in South Korea and hasn’t been able to come home for two year almost i miss her so much, i’m going to go now thank you all x
It’s totally understandable you would be worried and concerned, this is a safe and supportive space for to express how you are feeling. It’s ok to cry and let your feelings out, its a way of dealing with your conditions and the pending tests and results. Sounds like your going through a difficult time being worried and missing your daughter especially during this challenging time, we are here if you need to talk.
Hi @chelle151, I am so sorry to hear that you have not seen your daughter in South Korea for so long, yes, I expect you miss her so much, it sounds so far away.
So you have your appointment next Thursday and I certainly know that build up of emotions at least a couple of weeks before. I was never so emotional before my diagnosis and it has really been exacerbated during Covid times. I can burst into tears when I least expect it.
I also think we are missing social interactions and contact so much, it has been such a long time now.
Please do let us know how your appointment goes and don’t forget that you have an equal voice in a consultation…
Hi @chelle151 it’s perfectly normal to feel upset and to cry at times. We’ve all been through really anxious times on this forum and emotions can sometimes hit us when we least expect it. I remember crying listening to the first song I played when I came out of hospital and tried to adjust to some sort of normality again. Like others have said, it’s very brave to face up to your fears the way that you have and talk to people. I hope that your medical team are able to put your mind at rest and you know we ware all here to talk to whenever you need to.
Hi @chelle151
Bless you this is a stressful time for you especially when the answers don’t seem to arrive when you need them
I have included a link to MUGUS myeloma uk that may help you to understand it a bit better and others
Try not to google and stick to Myeloma UK info
I know it doesn’t seem like it but your doctor looks to be taking care of you
A lot of medical professionals have no idea about MUGUS or myeloma!
When you think of any concern write it down so you don’t forget as the thoughts come along
It’s quite normal to be anxious and feeling like no one is listening
(I wonder what causes this: perhaps it’s something to do with smartphones)