[louise1969Participant]

Hello everyone, I am so sorry if I should not even be on this site as I have not been diagnosed yet, but I feel so scared and alone , I can not talk to my family about my fears as I do not want to worry them, my doctor can not give answers which is why I am being referred to a specialist, I have been googling trying to see what my blood results mean and now I am full of anxiety, I am crying as I write this, seeing how nice you all are and supportive to each other has really warmed my heart, I just feel like I want to be surrounded by people like yourselves with some understanding, I hope I am ok to post here even though I am not diagnosed , just in the referral stages, my blood test has confused me because it has the exclamation mark next to immunoglobulin then says see as planned, it also says measurement in immunoglobulin is not reliable in patients with myeloma/mgus please treat with caution, please note change in reference range
Igg. 12.9 gl (range is 7 – 16)
lga. 6.18 gl (range is 0.70 -4.00) with flagged exclamation mark
lgm. 0.49. gl (range is 0.40 – 2.30)
It then says serum protein electrophoresis is normal but then says electrophoresis shows raised beta 1 and raised beta 2 fractions, no paraprotein detected…. I know showing no paraprotein is good, but I don’t understand why it says normal electrophoresis with raised beta 1 and 2 …… I am going mad with worry and would appreciate any help with what this all means, thank you so much in advance xx

• This topic was modified 2 years, 2 months ago by  louise1969.

[mariposaParticipant]

Hi. I have recently been diagnosed with Mgus..I spent the weeks before going through all the things that you described. The waiting is horrible, but if you don’t have paraproteins that can only be a good thing. Mine were 9. I haven’t got to have any treatment for now, just regular blood tests.
Since my diagnosis I have been diagnosed with borderline Parkinson’s which find hard to accept. Apparently I have to start taking medication in a few weeks.
I’m trying to be positive and glad that both conditions have been found early and I’m being treated.
I know it’s hard, but I found that everyone on here are so supportive and happy to help.
Take care and keep us posted x

[louise1969Participant]

Thank you so much for your reply mariposa, I agree that having no paraprotein is a good thing, however Google which I know I should not have visited says that myeloma can sometimes not produce paraprotein, I also read that having both raised beta 1 and 2 fractions often means malignancy and the raised lga is worse prognosis than raised lgg, this is why I have got myself in a complete state of anxiety, I should never goggle, but I always do, I am so sorry that you have been diagnosed with mgus but I am glad it is that and not myeloma and I hope it always stays as a watch and wait for you, oh bless you I am sorry to hear about your borderline Parkinson’s diagnosis, it’s so hard to have all these health worries, I have lots of issues as well so I totally understand how deflating it can make you feel, I really wish you well going forward and thank you again for relying, please take care xx

[kh0305Moderator]

Hi Louise,
So sorry to hear that you’re having to go through all of this. It is never easy and as mariposa says the waiting is the worst part 🙁 at least once you know what you’re dealing with you can start to move forward. I’m very pleased that you have reached out to the forum. As you’ll have seen from the various posts, you are not alone. There are SOOOOO many blood measurements and variations it is a complete minefield and takes some getting your head around! Don’t be afraid to ask your medical team as many questions as you need to. Generally most of them are super helpful and supportive.

Definitely try and avoid the temptation of Dr Google! I did exactly the same as you when dad was diagnosed with MM back in 2013 and it made for some scary reading and mostly turned out to be wrong! I think one of the statistics was saying life expectancy of 2 years when I googled it… well almost ten years on and he’s still here having had 7 years remission and near normal life and just going through his first relapse which initially didn’t respond very well to the treatment but with a change in his meds he is now nearing the end of his chemo cycles and is doing well!

If your diagnosis does turn out to be MM then please remember it is a very treatable disease and things are moving forward all the time. The fact that you have no detectable paraproteins is a good sign too. As hard as it is, try not to worry too much until they confirm – easier said than done I know. Dad was in such a bad way before they found the MM and he is still here – actually away on holiday at the moment!

There is a lot of support on here and the ask the nurse function is very useful for medical questions and has some great articles on there too (and definitely better source of information than google!).
Sending you big hugs xx

[kh0305Moderator]

Hi Louise,
This might be useful for you:

https://www.myeloma.org.uk/wp-content/uploads/2019/11/Myeloma-UK-Tests-and-Investigations-Infoguide.pdf

xx

• This reply was modified 2 years, 2 months ago by  kh0305.

[louise1969Participant]

Hi kh thank you so much for such a detailed and positive post, the story of your dads journey is amazing and I am so pleased that he is living a good life, stories like this really do show the positive side so thank you, also thank you for such detailed info, phew I didn’t realise it was so involved, I feel even more scared now, I will cling to the hope that no paraprotein and the fact I’m not anaemia are good signs but will try to put the bits like beta 1 and 2 out of my mind along with the lga highs , best of luck for your dad going forward my lovely xx

[tony642Moderator]

Hi Louise,

I am one of the forum volunteers. As has already been said, a lack of paraproteins is a good thing. I know the wait is agonising, but please don`t go finding things which you will worry about and you might not have! If it is determined you have MGUS or even smoldering Myeloma, there is a good chance it will not develop into full MM.

Wait for the results, then discuss them with your medical team as to what options are available to you, or even if you actually need any treatment at all! I would suggest you write any questions down before you speak with them as you are likely to forget what you wanted to ask when you are with them.

And even if it does develop, you have already heard that with treatment, a lot of people go on to live for a long time and have a good, normal life. I am one of those having had a stem cell transplant almost 3 years ago with no detectable signs of cancer since then. Therefore it is not all doom and gloom, what you need to do is stay positive.

Please let us know how you get on.

Regards, Tony

[mattlParticipant]

please,

please…do not go by what your internet search engine brings up, the only site to go to/start with is the official nhs website and go to any link provided by them.

but more importantly of all, be patient and wait to hear what your doctor/specialist tells you. they are the ones that know, not a keyboard warrior sitting in another country!

regards

matt

[louise1969Participant]

Thank you so much for your reply tony, you are of course right, I need to stop looking and scaring myself , especially as it may be nothnig, your post was very positive and it sounds like you are doing really well on your journey so that is great to hear, I have a lot of health issues including being diagnosed with a rare but serious allergy wheat dependant exercise induced anaphylaxis back in April and it has made me very anxious regarding my health, thank you for your reply, it means a lot xx

[louise1969Participant]

Thank you Matt, you are right, I need to just be patient and definitely need to stop googling, the funny thing is I am part of the Macmillan endometrial cancer forum due to having cancer 4 years ago, I have told many a new comer to please keep away from dr Google and it’s out dated advice etc, I send them to the correct sites for cancer and nhs etc, now I’m doing exactly the same thing, time to take my own advice I think so thank you for reminding me take care xx

[louise1969Participant]

Hello everyone, I feel awful coming in here again , please don’t get cross with me, I suffer with health anxiety which is not helping my situation… I have my kidney and bladder ultra scans booked for 9th nov (loads of microscopic blood and high acr level , the thing is I am really struggling today, I’m so scared because I kvow something is wrong inside, and I just can’t get my blood results out of my head, I was happy that it said no paraprotein detected and happy that it said normal electrophoresis, but I can’t get the raised beta 1. And 2 out of my mind, it is bad to have these apparently and they mean for a poorer prognosis, also others have had heavy and light chains tested , but I’m not sure I have, I just don’t understand what it all means, are my high lga the chain ? Sorry to sound thick but never even heard of myeloma until a few weeks ago, I do have severe fatty liver disease and I’m type 2 diebetic, I just wondered if those beta 1 and 2 would rise because of that, also my esr at last count was 37 and crp was 14.5 , I know you are busy people and o feel ashamed petering you because you are all dealing with your own diagnosis etc, but I am just so desperate to find anythnig at all in my favour , but I just keep hitting a brick wall, I was diagnosed with a rare but severe allergy in April wheat dependant exercise induced anaphylaxis and wondered if that has caused a problem also womb cancer 4 years ago , I honestly just can’t not cope with this worry, I’m so sorry x

[tony642Moderator]

Hi Louise,

First of all, do not think bad of contacting us again on here. This is what we do and we want to help so do not ever hesitate to get in touch if you need to.

It is obvious that you have gone through a lot in your life, but you are looking too much into your results and coming up with answers and problems before you even know what the results are.

Please stop looking for what it might be, and wait for the results and for your team to tell you what it is. Only then can you move forward positively with the correct treatment, and no matter what the results are, there is a lot of support available to you to help you through.

Please do not feel that you are bothering us, we are only too glad to help, but please remember that if you have MGUS or smouldering Myeloma, there is a good chance it will not develop into full MM, and even if it does, with treatment a lot of people go on to live normal and fulfilling lives.

Please do not get yourself wound up about something that might not happen. I know this is easy to say, but I have gone through it and I know what it’s like. What will help greatly is you having a positive attitude to dealing with it, and having hope.

Don`t forget that there is the peer buddy system available if you want to speak on the phone to someone who has been in the same situation as you. This might help if they could explain how they got through it.

Please keep us informed as to how you get on, and what your results are when you get them.

keep your chin up!

Regards, Tony

[louise1969Participant]

Tony you are a darling, thank you so much for taking the time to reply to me, it means a lot, i kvow you are right in all that you say, I need to stop worrying until I know what it is, yes that is hard to do especially with anxiety but I will try, most of the time I am fine and then it suddenly hits me that I could be dealing with this. only I can stop these thoughts and I will try, I am 53 and a strong independent person normally who copes with anythnig, I need to stay in tvat frame of mind, can I just ask if beta 1 and 2 were mentioned in your diagnosis tony? Honestly I’m happy with everything apart from those two little antibodies or whatever they are lol, I will definitely keep you posted once scans are done and see where we go from there, thank you so much for your support, it means a lot, also I am in awe of you for the way you cope , to go through all you do and still come and reassure others is truly amazing, for you and all of the people on here, it’s heart warming xx

[tony642Moderator]

Hiya Louise,

Thanks for the reply. To be honest I dont know what Beta 1 and 2 are as I have never come across them before. I went straight into full MM so if they refer to MGUS or smouldering Myeloma, then I wouldnt know about them. There is always the Ask the Nurse facility on this website where you can ask what you want and they will get back to you with the correct information. If you are not getting what you need from your medical team (have you been given the number of a specialist nurse to contact?) then I can recommend using this to put your mind at ease.

As for what I do on here, it really helps me to know that I am using what I have learnt and what experiences I have had to be used in a positive way to help others following what was a quite difficult time in my life. I was a few years ago where you are now, and if I can help you through it with moral support and encouragement, then it somehow seems like getting cancer was not all a bad thing. That probably sounds weird, and I probably haven’t explained it very well, but in short, all of us on here and at Myeloma UK are here for you when you need us.

Please continue to let us have updates. Keep smiling!

Regards, Tony

I hope this hlps, please let me know how you get on.

[kh0305Moderator]

Hi Louise,
As Tony says, don’t ever feel bad for reaching out. It is a scary time and the waiting is the worst bit!

It will all come together once they have all of the test results and your medical team will be best placed to advise on next steps. I’m afraid Ive not had any experience with beta 1 and 2 being mentioned at diagnosis either, but I imagine like most of the markers, it will all depend on how elevated they are and it may be that they are in manageable levels, especially given the lack of paraproteins.

As hard as it is, please try not to worry too much until you have all of the information to go on and definitely ask your medical team any questions you have as there is a lot of information to take in – I found my notebook was my best friend throughout the initial stages to keep on top of all of the information!

Stay positive xx

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