Hello everyone,I had my 12 week blood tests for MGUS, got the other results OK,IgG Kappa 12.10 which was down from last time but this time I asked for light chain blood test as well. It takes longer ,I had been asking for the results to be sent (at least twice,)so on Tuesday I asked again and the Admin said they had to be reviewed by the Dr as it is raised ,not unduly but enough to bother me .Good I have been able to talk it through with the Nurses so I am more than “waiting”,and its really hard after Im usually so good at saying how I manage to distract myself !I am going to Physio tomorrow so I will ask again,be very “pleasantly assertive” @Erica.I think the Dr is part time and taking over from my GP as he is away till after Christmas so it probably be next week,…breath.I just wanted to share it .Its really hard and Im hoping I get chance to speak to her soon.
Waiting for results is so hard , especially when they are delayed. I hope @Bannanacake that you will get reassuring news very soon.
Thank you @Coastgirl ,I have been very lucky so far so its a new experience for me ,tomorrow is a day nearer.
Yes, the waiting is horrible, @Bannanacake a few doctors at my surgery seen to work part time too.
My results have to be reviewed by my doctor as well, more delays.
I have also found our forum helps me as soon as I share something I feel as if my internal pressure cooker has let off its steam, a problem aired is a problem shared and all that.
Yes, breathing is good and you don’t sound like a broken record.
Please let us know how you get on.
Be kind to yourself @Bannanacake
The constant wait for testing and results is hard. I wouldn’t worry if it takes longer than you expected for your results. We all tend to think the worse. But there are many possible reasons why they take a long time.
Do speak with them if you are waiting for longer than you expected. They can give you information about why this might be the case and when you are likely to find out more.
Worrying isn’t good for any of us. Try to make time for yourself and to do things that you find enjoyable and relaxing to take your mind away from it. Physical activity is a great stress reliever.
Don’t forget there is always the help line if you want to talk to someone:
You can call free on (tel:0808 2080 888) to speak to a member of trained blood cancer support team in confidence. The phone lines are open:
- Monday: 10am–7pm
- Tuesday to Friday: 10am–4pm
- Saturday, Sunday and bank holidays: 10am–1pm
Do let us know how you get on.
My husband gets his blood every 6 weeks on a Monday then gets phone conceltation on the wed …Scotland… about time he was back seeing a consultant been like this from covid …
My light chain blood results are usually 4 weeks behind for example yesterday I had
my light chains numbers for last blood tests
This months light chains will be in the next review
They take longer than the other bloods I think it can take up to two weeks (don’t quote me)
I dont know what light chains numbers are i will have a wee read …stay strong and well
Thank you @Erica@2DB@Jules@Smiddy for your kind words and @Alice_BloodCancerUK .The thing I was waiting for was to know when I could speak to the Dr if there was a plan and also to have a copy of my results to see for myself.Yes@2DB the light chain ones took longer but I was lucky it was only 2 weeks.
So now I am happy to say I have a copy and a telephone appoinment next Tuesday.I have rung the helpline and Myeloma UK are sending me a printed copy pf guidance for the GP so I can refer to that and leave a copy at the surgery.
Free Kappa 22.80,
Free Lambda 9.00
Kappa:Lambda Ratio is
only slightly raised considering I didnt have a light chain 2 years ago and its only been tested now ,so I guess that will be monitored al8nf with the serum protein.
I am finding some space for myself but what a week .
My brother is here from Canada and one of my Daughters is arriving
From NZ with my eldest Grandson so emotionally its been a roller coaster.Plenty of distraction …
Breath again .Its like waiting for a bus you wait and wait and they all come at once .Take care everyone
So pleased your results came at last @Bannanacake and I hope your telephone appointment will go well on Tuesday and that you will have a lovely time catching up with all your family.
Awwww bless you
Now breath and enjoy your family precious moments
Sorry to hear about your anxiety surrounding getting your blood test results and your telephone consultation on Tuesday goes well. My tests have now been stretched out to every four months. I suppose this allows the Haematology department to see and manage more patients. My next appointment is in January and I have been instructed to do the bloods only two days before.
Enjoy seeing your family.
Hi Bannanacake, was thinking about you and wondered how you are doing?
and @mlb for hopefully useful info.
Thank you for asking after me after my last post @helenfwallace and everyone ,visitors been and gone so space to reflect.The Dr called as expected but first had to talk to a medical student who just didnt get my concerns and was just quoting what the Haematologist had written . I was "pleasantly"assertive@Erica so when the Dr came on I think it was finally agreed she would try and contact the Haematologist to update her on the new light chain finding.I was on speaker phone so I felt like I was shouting down a tunnel ,
Anyhow time has moved on as it does ,next blood test ill get the light chains tested again and see what happens then,im not fretting about it anymore .
The most useful thing was that the Nurse at Myeloma.org.uk reminded me about their booklet on Myeloma and MGUS ,"A Guide for GPs "so she sent me 1 to leave in the Surgery and
1 for me ,its easier to quote from than reading on line,@mbl another one you may find helpful.In the meantime dental problems have taken over you wouldnt beleive it .A filling fell out the day my Daughter and Grandson arrived which resulted in a difficult extraction and consequently a dry socket. Ive been back and forth having dressings and it feels like Im finally over the hump so Im taking it very easy .There is a chance we can meet up in the NY so with 1 thing and an other .So thats me up to date and I hope this finds you all well and looking forward to Christmas,Im off to make some felted owls
Good to hear from you. Oh no what a nightmare dental problems! Way back too long to remember many careers ago I trained as a dental nurse so I understand it well. Hope you get it sorted quickly.
Glad your appointment went ok and you were able to ask for what you wanted.
Keep us informed hope you get that tooth sorted soon. Take care.
Oh @Bannanacake oh, I do feel for you with your dental problems, there is nothing worse. Really look after yourself
I am so glad that you have seen your daughter and Grandson, even if you were in pain at the time, I bet it was still a boost for you.
Be very kind to yourself
Hi@Erica,thank you ,I like "there is nothing worse"i😩t feels like that,it will just take time and I am resting up👍
So glad to hear that you are now more reassured.
I too have had a dental disaster. Lost part of a filling and part of the tooth, so I’m awaiting extraction. I visited an emergency dentist because there were no emergency appointments available at my own dentist. I was asked for a letter from my GP/Heamatologist to ok that practice to a surgical extraction. I thought that very odd as did the GP? Has that happened to you? I now have an appointment for an extraction under sedation with my usual dentist at the end of January. I am terrified of dentists since a bad and dramatic extraction of a wisdom tooth when I was a student. I am much less anxious than I used to be and I have to face this particular demon to cure myself.