Good morning everyone. I am new to the forum and have been reading the comments here under the MGUS topic. It’s very helpful for me to read and understand others experiences who have been diagnosed with MGUS. I was diagnosed almost 3 years ago. I am in Italy (husband is Italian) and it’s important for me to read as much as possible in English so I can formulate my questions etc when I see my Italian hematologist. I have a relatively low IgG lambda, but it has more than doubled since my first blood test with monoclonal component. Also, this last blood test didn’t include a prescription for the FLC. The lambda was very high previously, but the ratio was still within normal limits.
The other symptoms I am reading here that seem relatively common with this, are skin, as well as bone pain. Does anyone else have endocrine issues? Vitamin D deficiency? I have been taking prescription vitamin D to try to bring down the PTH, parathyroid hormone, but it is still very high.
Thanks to everyone for sharing and being supportive of each other in a forum that is so helpful! I’d downloaded and used the diary for my past 3 blood tests.
Hi @elipt66 a great big welcome to our forum.
I have another blood cancer, but I just wanted to welcome you and to say I was struck by how isolated, scary and unbelievably difficult I would find it being in a different country, with a different language, trying to navigate their medical system.
I am glad that you are formulating your questions as my mind goes blank as soon as I go into a medical office.
Anyway really look after yourself and take lots of care.
You are doing exactly the right thing by writing down questions that you want to ask.
I think you want to know why you are no longer are being tested for Free Light Chains, so I suggest that you ask the question for your own peace of mind. As you are in Italy you will be tested according to what is considered "best practice " in Italy and this might be different to what happens in the NHS. I have prescription Vit D to treat osteoporsis. I also have low level IgM kappa paraproteins. My GP tested my parathyroid level and it was within normal limits. I have no idea if taking vitamin D affects the level of parathyroid hormones but it seems like a good idea to ask about it at your next appointment.
Hello Helen,
Thank you! Yes, I’ll add the FLC blood test question down too. I see the specialist next week. Thank goodness she is so kind and speaks slowly enough for me to follow. My husband always comes with me as well. My most recent blood test shows calcium and vitamin D normal, but I continue to take the vitamin D anyway. Fingers crossed she can help me to understand what is happening with the parathyroid hormone.
Good to hear that your Vitamin D and Calcium levels are normal. I have just had a copy of my bloods for my last haematology appointment. The parathyroid hormone was high at 12.5. Calcium were once again borderline high-which I was really disapointed about. Lab messed up on the Vitamin D test!
I have emailed the secretaries about the PTH.
You are really lucky to have a supportive husband. My husband is totally hopeless on all things medical.
Are you having Italian lessons? I lived in Germany for some years and had some lessons in Germany (German for foreigners). I found most of the doctors I came into contact with wanted to practise their English!
A very warm welcome to the forum, and thank you for posting. We do hope you’re doing okay? We appreciate it must be a challenge managing your health in another country where the language is not your first. It sounds as though you’ve been doing your best to prepare for your appointment, which will hopefully give you more clarity on what is going on. Pleased to hear you found the diary helpful- our website and Myeloma UK both have written information about MGUS, too, in case that’s useful. Do you have a GP there that could support you, too?
Please do feel free to contact our Support Team if you’d like to talk anything over.
Hello Helen,
The Calcium is pretty important, I think. From what I understood in my last appointment regarding the PTH, the PTH goes up if the vitamin D is down. But right now I can’t remember how the Calcium fits in to it, but it does. I’ll ask next week at my appointment.
It’s funny how our partners can be great about some things and not as great in other things. My husband is great for doctor appointments, but if there’s a needle in the room - he’ll faint if he sees it.
That’s so funny about the doctors wanting to speak English with you! I’ve had the same experience here. I have taken Italian language classes and got a lot out of them. However, at home we tend to speak a mix of English, Venetian, and Italian. (our own language practically)
Please keep us updated regarding the Calcium and PTH, and hopefully they’ll get your D levels correctly!
All the best
Elizabeth
Yes Calcium levels are important.
Calcium metabolism is pretty complicated with lots of feedback loops. PTH was normal when my GP checked but then my calcium was also lower. See if I get a response to my email.
I do have a new GP here. Our previous home doctor retired a few months ago, and we really liked her. Our new doctor is very sharp (in a good way), but I have to be sharp with my language skill with her, as she’s gently helping me to be more comfortable speaking.
Hi, been a while since I last posted, just waiting on the results from the bone marrow samples taken, fingers crossed I hear next week, as the wait is murder.
I’m only too aware that given the stage I am at, not having had a full diagnosis I am one of the luckier ones on here at the moment which makes you feel a bit of a fraud.
The Dr carrying out the procedure was excellent and explained things a bit better in a language I could understand lol. Best result is the bone marrow come back all clear and it’ll be blood testing for the next few years every 4 months or so.
On the plus side I managed to drag myself roun d the Tough Mudder Course raising some money along the way for prostate cancer, which is my works charity this year.
Hi @RM952 good to hear from you, you are never a fraud on here.
Yes, the waiting is murder and I seem to do a lot of it, I still get anxious before, during and after all medical tests, results and appointments even after 19 yrs.
You mention the chance of having regular blood tests every 4 mths or so, that is what is called ‘watch and wait’ or ‘active monitoring’.
Respect to you for completing the Tough Mudder Course.
Please let us know how you get on, fingers and toes crossed for you.
Look after yourself
This kind of monitoring can feel a little scary, and it’s okay to say so, and so many of us will agree. It’s so nice to have a forum to come to, to read and to share, ask questions etc…
Before I’d been told I have MGUS, I’d never heard of it before. Because I’m a little quirky, I tried to have a sense of humor, and when I read I have IgG Lambda, I said, “It’s all Greek to me!”. But she didn’t smile. Nor did my husband. I didn’t realize that has no sense in Italy.
Anyway, all the best for you! Congrats for doing the Tough Mudder Course!
Please keep us updated as you can.
Elizabeth
It’s all Greek to me . You’d have got a laugh up here in Scotland lol.
I called up today for results of my bone marrow samples, got a call back to say I’ve got an appointment on Wednesday to discuss the results and what happens next. So either way at least I’ll have an idea of what’s going on.
Hi @RM952 please do let us know how you get on on Wednesday.
I find taking notes helps me and not being afraid to ask for something being repeated or put in lay persons terms.
Have you anyone who might go with you?
Take lots of care
Best wishes for a productive, question answering appointment today! Sending positive energies your way up there in Scotland!
I find that the closer I get to appointment time, the more calm I am. 5 minutes at a time and you won’t regret having questions ready for doctor.
All the best,
Elizabeth
Hi Erica, thanks for enquiring, I met with consultant today and he said I had smouldering myeloma, so it’s blood tests every 11-12 weeks for the foreseeable future. He did say due to my age/symptoms it will be when it becomes active myeloma as he said, instead of if.
I’m relieved to find out what’s going on and he was really good, explained everything in lames terms and how we proceed going forward. I also took my partner who was great and asked loads of questions.
Many of us on our forum @RM952 are on regular blood and/or other tests and it is commonly called ‘watch and wait’ or ‘active monitoring’.
Your consultant sounds really approachable and sensible.
I am also so pleased that you took your helpful partner with you, they will probably be sharing similar thoughts, emotions and practicalities as you…
Look after yourselves and please keep posting
Hi@RM952 I am catching up with your posts how are you both after the diagnosis🤔 it is a lot to take in good to hear that you will be on 11-12 week blood tests to monitor your
smouldering myeloma and sounds like you have great support which makes all the difference.
I was very impressed to read your Tough Mudder Challenge adventure, sounds like you have great spirit to keep at it ,well done👍
I continue to be on 4 monthly watch and wait with rising paraproteins my Kappa Lambda ratio is rising too and now high
so just an other thing but so are others on here I dont think anyone finds it easy but its better to be monitored,sometimes as you say waiting for results is really tough.
Did you manage to look on
They have a lot of encouraging and informative info also a diary you can download or ask for one to record your results and notes for appointments .
RM952, okay. Thanks for letting us know. It’s not easy to be watching results and monitoring. It’s so good to have a partner at your side! And to have a doctor who takes the time with you to explain everything. Bedside manner is so important, and I’m glad you have that!
Bannanacake, that’s what I’m watching for especially, the ratio of Kappa / Lambda. My Lambda is high, but ratio was still within limits the last time I had the FLC. oy
My appointment yesterday was okay enough. She explained she doesn’t order the FLC every time.
Next follow-up is in 4 months and this time will include FLC. Even after having had shingles vacc last year, I have shingles like blisters on the same place on upper right back, and she referred me to dermatologist. That’s probably the reason for rib pain and low fever. Next time, I shouldn’t do my blood test unless I’m feeling well, as she wasn’t sure if the shingles is the reason for the double of the monoclonal componente. (I have my doubts about that, because I’ve been dealing with shingles on and off since I had covid).
The D vitamin level and calcium are normal, but PTH is high. My endocrinologist is aware also. So I have no answer there either. Probably just to monitor.
It’d been a technically challenging day for my hematologist, so I was not wanting to interrupt and I didn’t go over my whole list of questions.
Practicing mindfulness today. We have beautiful blue skies! Not too hot! This morning I listened to the birds and the bees buzzing around the jasmine. The fragrance is magnificent!
All the best,
Elizabeth
