[yvonneseParticipant]

Hi

I know this is a daft question but when you went from Mgus to Myeloma had you any symptoms that indicated you had progressed or was it just based purely on your regular blood test results? I’ve noticed that some people had no symptoms but positive blood tests …….

Regards

Yvonne

[yvonneseParticipant]

Hi Joe,

I’m pleased you got through your tests okay. Now its just the waiting. I was at work every day so that kept my mind off things most of the time but its hard not to worry. I do know how you’re feeling as this time last year I was having to deal with the same. Now a year later I’m still stable. I have more blood tests tomorrow and back at hospital next Wednesday for latest results.

Keep calm and carry on….easier said than done!!

Keep me posted and I’m here as a sounding board if you need to offload…

Best wishes

Yvonne xx

[yvonneseParticipant]

Hi Jean,

Many thanks for your advice. It is appreciated. I am due blood tests again next week and see my Haematologist on 13th May for my latest results. It is 1 year since I was first diagnosed with Mgus / borderline Myeloma and I’m in a routine now with what to expect. If the results are stable I’m expecting to probably just see the Myeloma nurse next time unless anything changes. If I’ve had any queries I have emailed her and she speaks to Dr and gets back to me with the answer. You just have to get on with things as best you can. I work at a gp surgery so I am fairly familiar with how things happen.

Fingers crossed I am still stable.

Best wishes to you and your husband

Yvonne x

[yvonneseParticipant]

I know what you mean re looking information up. It can definitely mess with your head and you end up tormenting yourself needlessly. I am making a concerted effort to not keep reading information. There’s not much point. Whatever will be will be – it won’t change anything.

Just got to go with the flow…..

Thanks for your input

Yvonne

[yvonneseParticipant]

Hi Graham,

Many thanks for your advice. I am due more bts in a couple of weeks again and seeing haematologist 13th May. Which blood tests do you normally ask for? I usually have fbc, u&e, calcium and Immunoglobulin. I am having the Serum free light chains as well this time. It has been a difficult couple of months because I have been having bone pain in my right humerus (to the extent I can not put weight on it) both femurs and back. I have had more xrays which showed nothing suspicious. I have also had MRI on my right humerus/shoulder which came back clear. Obviously I am worried as this has been going on since end January and I still have this bone pain. I’m seeing my gp later this week to discuss this pain .

Anyway thanks once again

You’ve been a great help

Yvonne

[yvonneseParticipant]

Hi Joe,

I know you’ll feel nervous …..everyone I have spoken to does.  Hopefully you won’ t have to wait too long so you can get the tests over with. Take someone with you if it helps. You’re no chicken I’m sure. Let me know how you go on.

Take care

Best wishes

Yvonne

[yvonneseParticipant]

Hi Joseph,

I was diagnosed with Mgus IgA / borderline Myeloma in may 2014. I had been to my gp because I had like growing pains in my legs and tingling in my feet and hands. I had several bts including Immunoglobulin which came back abnormal. My gp rang me and said my tests were indicating I could have Myeloma so he did a 2week referral toHaematology. This was such a shock as I am sure you know. The Haematologist referred me for more bts, skeletal survey (which is totally painless as just xrays of various bones) and finally a bone marrow biopsy and trephine. I took my husband with me and he was allowed to be with me while I had it done. It only takes about 20 minutes . I won’t lie to you but it is does hurt. I just squeezed my husbands hand very tightly. It has to be done so the doctors can find out if you will need treatment. I was told I definitely had Mgus IgA Lambda but NOT Myeloma… although I am borderline . I have been back to hospital roughly every 10-12 weeks for blood test results. My paraprotein has gone up and down and back up again which is OK. If it rises and keeps rising that is when things could be changing. I feel like I’m on a knife edge. It really is a rollercoaster mentally and emotionally especially when due to get BT results. I am coming up to 1 year since Mgus diagnosis and if all stable will just need to see Myeloma Nurse . I only joined this forum recently too but it is reassuring to speak to people who are experiencing the same as it can be a bit isolating. Its better to let it all out than keep it bottled up. I have had some lovely feedback from people which makes me feel a little less alone.

I hope all goes well for you.

You’ll get through it.

Best wishes

Yvonne x

[yvonneseParticipant]

Dear Angelina

I just want to know what’s happening with my results …..if things are staying stable or getting worse. I am borderline Myeloma and just so I can deal with this mentally I want to be aware of all the facts not just a select few. I am sure you understand that it can be difficult living on this knife edge all the time. I am still seeing Haematogist every 10 weeks at the moment but am just coming up to 1 year since diagnosed so if all is stable for moment I am expecting to be passed back to Myeloma nurse or gp surgery.

Many thanks for your reply

Best wishes

Yvonne xx

[yvonneseParticipant]

Hi Tony,

Thanks for replying. I am seeing a Haematologist at Nottingham City Hospital. I am usually in and out of appointment in about 10 minutes with just a quick consultation of what my paraprotein has done . I know that there isn’t a lot to be said when you just have Mgus but I do want to have some form of control if possible even if its only by knowing what my various results are.

Thanks for your input

Yvonne

[yvonneseParticipant]

Hi Carol,

Thank you for your reply. When I go back mid May for my results I will ask. Obviously its easy to read information on the internet but without all the facts and figures I don’t know what is relevant to me specifically. I want to be informed about my situation without being paranoid if you know what I mean.  Its me that is having to deal with it and sometimes its easy to let your imagination run away with things.

Many thanks

Yvonne x

[yvonneseParticipant]

Hi

<span style=”font-size: 13px; line-height: 19px;”>Does your hospital generally give you all your blood results easily or do you have to prise it out of them? I have been diagnosed as Mgus/ borderline Myeloma since last May and all my consultant will ever give me is my Paraprotein which is 11 at the moment. I generally visit hospital every 10 weeks at the moment. I just wondered because I have noticed that quite a few people seem to have various other results. Do drs not like giving all results in case we may draw wrong conclusions on things? Just wondered .</span>

[yvonneseParticipant]

Hi Helen,

Glad you got your results at last !! Its not good you had to wait that long as the mental stress is hell. Its reassuring for you though its still not easy. I had my appt with Haematologist last Weds. My paraprotein had crept up again slightly and because I told her of bone pain in my arms, legs & ribs she sent me to have more xrays straight away. Now awaiting results. Other than that see her again in 10 weeks. That will be 1 year of living on a knife edge. I’m sure you feel the same Helen but we can’t get rid of this problem with our blood so on we go.

Take care

Hugs

Yvonne xx

[yvonneseParticipant]

Hi Dave,

Many thanks for your reply. These bone pains are definitely not normal aches and pains. The pain in my femur and arm / shoulder take my breath away at times and have had many sleepless nights with it. I’ve not heard anything yet….but if they say not Myeloma related then I may follow your lead and request another opinion. Just shows that the easiest tests to do aren’t always showing the full picture as in your case. Its a good job you persisted or things would have got a whole lot worse for you. Hope you are okay. Keep me posted.

Take care

Yvonne

[yvonneseParticipant]

Well I saw my Haematologist yesterday. Paraprotein crept up slightly again. Had to tell her that having bad bone pain mainly in right femur, right humerus and ribs so she immediately sent me to have xrays taken. I really cannot fault the care and attention I have had with the NHS since I was first referred last May. Dr says she will call me when xrays have been seen by Myeloma bone specialist if there are any lesions and get me back pronto. My Myeloma nurse was in with us as well. She has referred me to have some more complementary massage treatment again. I had several sessions last year and it really helped. I did get tearful for the first time with them. My hubby Steve was with me as well but I felt really overwhelmed with everything this time. This bone pain is new and I have had it for a few weeks and its not going away so I had to say something. Just bit scared. Now waiting for the phone to ring….or not.

[yvonneseParticipant]

Hi Helen,

It is really difficult Helen. I have been going to hospital every 10 weeks but you’re right….. we’re living our lives in these blocks of time. Its no joke. It is really hard to be “normal”. We are on this rollercoaster though and we can’t get off it so we’ll just have to hang on in there……

Take care xx

[Author]

Posts