Myeloma together with Sarcoidosis and pulmonary fibrosis of the lungs

Hello my name is Trish and 3 years ago I was diagnosed with monoclonal gammopathy of unknown significance (MGUS) at the age of 57. I was assigned a haematologist whom I have had 3 monthly telephone appointments with and regular blood tests to monitor the levels of M protein in my blood. They have been steadily rising over this time and 2 weeks ago it was decided I needed a bone marrow biopsy to determine the presence of myeloma. Yesterday I had confirmation I have myeloma and have now been referred for a CT scan to ascertain its full impact on my bones.

It was a shock I have to say but deep down I knew really as over the last 12 months I have been have many symptoms which pointed to this condition.

Unfortunately I was also diagnosed 2 years ago with pulmonary fibrosis and sarcoidosis of the lungs which has also spread to my lymph nodes, this condition also mimics the symptoms of myeloma. I am managing the symptoms at the moment without medication. I have changed my diet and have lost 3 and a half stone via a nutritionist and am really interested in an alternative way of fighting this condition and would welcome any advice from anyone on here please.

It was hard telling my family yesterday and until I have the results of the CT I am in limbo as I will then know at what stage the myeloma is at and take it from there.

3 Likes

Hi @Trish I am so glad that you have found us and posted and I expect your diagnosis was a shock. It must have been hard telling your family yesterday.
I have found that every extra diagnosis I have received compounds my shock, thoughts and emotions.
When I was originally diagnosed my GP said to me to take responsibility for my conditions and I have found that it is so true when I have different consultants for the different conditions. I have to keep reminding them of the other conditions I have, especially if they have similar symptoms.
I also remind professionals like my dentists, opticians etc.
You have done brilliantly making changes via your nutritionist.
All I might suggest is appropriate, with your other conditions, exercise, I am a walker and believe in fresh air, but others cycle, swim etc.
Personally I find Pilates helps me with my core muscles, balance and general muscle strength, others prefer Yoga.
For me it is slow and steadily building up.
I will copy a link on the Blood Cancer UK website Blood cancer and keeping active | Blood Cancer UK
Please do keep posting how you are getting on and the Blood Cancer UK support line is there for you on 0808 2080 888 if you would like to talk to someone.
Be kind to yourself and take care

1 Like

Hi Erica, thank you so much for your lovely message, it is very much appreciated. I am pretty active until a couple of weeks ago ss I have been very active walking my dogs but then fell quite badly in the garden and bruised my whole body pretty much. I’ve been licking my wounds so to speak. I am unable to continue with my Pilates or yoga at my neurologists advice due to a spinal operation a couple of years ago I was gutted. I do work part time after retiring from the police 6 years ago so I keep busy. Lately my pins and needles and cramping legs at night are driving me nuts and I barely sleep! Thankfully I have a wonderful network of friends and family but I’m not going to lie I am dreading the CT results because I have been worried for quite some times about my levels rising and told my haematologist this. He still maintained I keep talking to him on the phone every 3 months. It wasn’t until I began having ‘different’ pain in my joints and blurred vision etc that he suggested the bone marrow biopsy, plus a face to face meeting which was arranged 4 days later where he performed the bone marrow biopsy!!! OMG!!! that was horrific!!! Not very nice at all.

It is what it is, I just need the CT now but I have feeling it’s gone passed stage one just because I have had the symptoms for so long, :tired_face:

1 Like

Hi @Trish,
I am so very sorry to hear of your recent ct results. I am so pleased you have found us. I can see that Erica has given you some wonderful support already.
I simply wanted to reiterate that if you ever need someone to talk anything through with, our helpline is always here for you- 0808 2080 888.

It is no wonder you are feeling in shock. Often even when we are listening so closely to our bodies & have our own suspicions, hearing it all out a loud & confirmed can be incredibly hard, so do take a day at a time & know we are very much here for you.

Best wishes, Lauran

2 Likes

Oh @Trish I also had a fall not so long ago so I might know how you are feeling, yes, licking my wounds was just what I felt like, spectacular bruising and it hurt to breathe let alone to do simple tasks like dressing myself.
I have scoliosis and osteoporosis and have lost 5" in height with healed fractured compressed vertebrae, but for me, obviously not you, Pilates has saved me.
Waiting for results is such a horrible, anxiety making feeling.
Bone marrow biopsies affect different people in different ways, but I believe in asking for every pain relief going.
Family and friends are priceless and we are here for you.
Perhaps do lovely things to divert yourself whilst you are waiting and spoil yourself and please keep posting.

1 Like

I found out I had myeloma via gall bladder infection and visiting A&E in 2017 so I don’t know what it’s like living with monoclonal gammopathy of unknown significance (MGUS) though my myeloma was active 6-8months before my diagnosis
I must have had monoclonal gammopathy of unknown significance (MGUS) but not aware of it

The CT scan with tell if you have any lesions/fractures in spine/hips/arms/legs/pelvis/scull
Don’t dread it see it as a positive as you will know what’s happening with your bones.

I have boney disease with quite a few lesions as my myeloma had been busy in that 6-8 months

The bone marrow biopsy with give you the percentage of active myeloma mine was 75% on diagnosis

As you have been monitored with monoclonal gammopathy of unknown significance (MGUS) your myeloma should be caught in the early stages which is a positive
A lot of us are already in a poor state by the time it’s found.

My PP on diagnosis was 45
I have light chain myeloma IGGK they were over 2000
With plasmacytoma in my spine and a fracture at the T9

I’m pleased to say I’m still here after
two transplants and 2 lines of chemo

I know having all these tests are daunting but I see them as essential to know what’s going on in my body and I can deal with that rather than worrying about the unknown

4 Likes

Hi Lauran thank you so much for your kindness. Everyone on here is so lovely and it’s exactly what I need right now. My head is all over the place and I am sure so is everyone else who is going through this too.

I haven’t actually had my CT yet , really hoping it will be next week fingers crossed. Just had the diagnosis from the bone marrow biopsy which wasn’t pleasant as I am sure you are aware. The CT is to determine what stage I am at. I just need to know what I am dealing with. My daughters getting married next August and I really want to be there xxx

3 Likes

Hi I am so sorry for what you have gone through and thank you for explaining what my CT will be looking for. I’m not afraid of what it might confirm because my gut feeling is that as I have had theses symptoms a long time now over 3 years, but my haematologist has dismissed them as my blood tests had not hit the magic number!
The waiting is the worst and I’m not very patient so that doesn’t help either! Hoping for next week so I can start planning a wedding x

3 Likes

Oh @Trish, yes, the waiting is the worst and it is stopping you planning the wedding too which is just not fair.
We want to know all the plans you make. xx

2 Likes

Ah bless you don’t be sorry it’s been a blessing for me although a bit of a shock at the time
I figured I couldn’t give it back so i was going to do everything to get back to some sense of normality living with my myeloma.

It’s weeded out those I don’t need in my life given me some lovely people who are now part of this journey
I have a very close relationship with my amazing brother. I encourage my kids to live their lives as it can change in a instant

I’m very happy with my life I’m not living in the future anymore I live for this moment in time as it’s the only one we can do something about

I have had counselling I live with anxiety and depression which is under control

Live every day and do the things that make you happy
If that’s a cup of coffee and a good biscuit
A magazine
Look for the simple things
A vase of your favourite flowers

Life is precious

3 Likes

Wow, @2DB , so true!!!

3 Likes

You are so so right in what you are saying. I only found out the day before yesterday and it’s been a bit of a shock. Telling my children was the worst as even though I have had symptoms for a very long time they just called me a hypochondriac! So as you can imagine the guilt they are holding right now. I don’t blame them in the slightest. This illness is very discreet. Nothing to see so nothing to confirm really until now.

This morning I was in a dark place. Feeling sorry for myself and still in a state of shock but so glad I really wasn’t imagining my symptoms!

Tonight I am more in control of how I feel and once I know properly what I am dealing with after my CT, I will be in a more positive place going forward. Until then I’m in the lap of the GODS. Take care of yourself you have so got this x

6 Likes

Hey Trish,
i was diagnosed june 22, bone marrow biopsy showed myeloma was 95% active and my free light chains were 25k! i asked about staging and was told it didn’t matter as the treatment would still be the same, i later saw on notes it said stage 2 :woman_shrugging:t3:
i too worried about mri and ct scans. its natural as everyone says but that doesnt help to know! i went through 6 cycles of chemo and a stem cell transplant this january. I was quite far gone when they got me but with you having monoclonal gammopathy of unknown significance (MGUS) they’ve been monitoring you for a while, thats the positive, you are in the system and they will take good care of you, no one wants this diagnosis but remember its very treatable.

4 Likes

Hi 2DB wow you are so so right when you talk about having real friends and family who you need to keep close and in your life. I made a decision quite a while ago, long before my diagnosis (which was only last week, I may add, so still coming to terms with that) to detach myself from those whom I found negative and not really who I thought they were. It was upsetting to realise that on the surface people were one thing but over time the realisation set in and once I had made up my mind it was almost a cleansing process. Gone are the feelings of why someone was behaving like they were, leading to me overthinking things I had done etc when it was more about them than me. It was a hard reality check going through that but I have found ‘acquaintances’ will ‘drop off’ from your life and your ‘real’ friends will stay close no matter what and those are the ones I most certainly need right now.

I know I have a very long battle ahead of me and I have so much I want and need to achieve! I know I did say, I will finish my garden (together with the help of my other half and family) ‘if it kills me’ little did I know it might! Just a flippant statement at the time has a very profound meaning now and walking around my garden and seeing the progress over the years has made me proud of my achievements.

It’s always been my happy place, my garden, watching everything I have nurtured and grown, many from seeds and many from cuttings and presents from friends and family, blossom into amazing shrubs and plants. Every day I go around talking to plants that have suddenly appeared and knowing I have grown that gives me a very warm feeling.

I am still waiting for my CT but our local hospital is under a major incident crisis as they have found what they call ‘concrete cancer’ see the irony in this in itself! My haematologist has said it won’t have an impact on when I will have my scan so I’m holding on to that.

I am meeting my dearest old friend for lunch today and it WILL be a happy day. The last few days since my dreaded news day have been emotional and totally exhausting. Finding the right words to tell people has been so hard that I have even chickened out with some just because I haven’t had the emotional energy to deal with it.

Tomorrow I am going shopping with another dear friend for my mother of the bride outfit. I am looking forward to a happy day, well hopefully it will but that could go either way depending on what I see. It could be a disaster if I can’t find anything. But then there’s always another day and another shop isn’t there.

Sorry for the long post tagged onto your very poignant post where you have reconnected with your family and particularly your brother. (When the time is right I will post about my own relationship with my brother, but as of now I want to have a happy, hopefully stress free day) Take care of yourself, so many lovely supportive people on here and I feel so blessed to have found them all. x

5 Likes

Hi @Trish, yep, the flippant things we say.
How lovely to have your garden as your happy place, that is true contentment.
I shall be thinking of you searching for you ‘mother of the bride’ outfit in all those dress shops, I reckon you will know the right outfit when you see it.
Oh, yes, there is always another day and an adventure in another shop.
I love your personal insight, enjoy your day and I await with anticipation hearing how it goes, spoil yourself

Hi Bitsy I am so sorry for not replying sooner. I have had so many lovely people on here supporting and giving amazing advice it’s been hard keeping up with them all. Thank you for this information.

Today I saw the consultant and It’s been confirmed that from a scan taken in FEB this year, for my sarcoidosis of the lungs and lymph glands, the radiologist revisited it and confirmed lesions on my ribs which therefore confirms the presence of myeloma.

Still reeling from this news he said as I am young (60 but thank you for saying I am young) I will have every treatment going.

I am seeing the nurse on Friday to go through it all as it was so much to take in all at once.

A long journey ahead but one I have to take and at the end of it all I have my daughters wedding x

3 Likes

Hi @Trish I expect reeling is a good descriptive way of describing how you are feeling and I am so glad that you will be seeing the nurse on Friday so they can explain it all and answer the questions you have written down and might have thought of.
I have found a nurse contact so useful.
If you would like to talk to someone the Blood Cancer UK support line are there for you on 0808 2080 888 and we are all here for you as well.
If you are naturally having trouble taking it all in is there anyone that can come with you as a support and to take notes?
Don’t worry about asking the nurse to repeat things or put it into normal speak and not medical speak.
I will be thinking of you on Friday and please do let us know how you get on.
Be ever so kind to yourself and wallow in being called young!!!

1 Like

Hi Erica thank you for your kind words once again. I am waiting right now for my full body scan to see if the myeloma has spread anywhere else.

Treatment was explained to me by the nurse and consultant which sounded quite intense but totally needed. She will write everything down and explain things clearly again so we can take notes etc. we have cried lots of tears but that’s mainly because we have told our nearest and dearest. But I am strong and ‘young’ haha and a tough old bird too so travelling this road will be hard but not impossible. x

2 Likes

Oh @Trish ,
I’m so sorry to hear your news. I’m sure it will take some time to absorb it all.
Here to support you…just ask.
Love and hugs. Xx

2 Likes

Hi Alex thank you so much for all your support and kindness, it really does mean a lot to me right now. x

2 Likes