New to Mgus & Myeloma

[Snoopy-uk]

Hi, My husband has just been diagnosed with Mgus & a symptomatic myeloma.. So we're just trying to get as much info, to understand, what his diagnosis means..& of course what to expect..

[lillychick]

Hi Snoopy

I have had smouldering myeloma for 2 and a half years. It can be a very overwhelming diagnosis and a bit of a confusing one to learn you have cancer and it's not being treated!

My way of thinking about it has changed dramatically since diagnosis. I was a bit angry and 'woe is me' at first. I was diagnosed age 45. I've had to turn my thinking around since then for my own sanity. I have now put my own positive spin on it and think....well actually, I'm fortunate. I have cancer but it's been diagnosed early and I'm being so closely monitored that any changes will be picked up on right away. Basically I am making the most of the treatment free time I have, however long that may be. Plenty time to worry when the disease moves on.

I do have my blips but they are few. One thing I will say is that there is no avoiding the stress around the 3 monthly appointments, you just have to accept there will be stress and get through it. My husband is an amazing support at those times and I'm very grateful for that.

On a practical level....myeloma UK is the best place for information. Also on a practical note, ask for blood forms to get his bloods done a day or 2 in advance before appointments. I had a year of excruciating long waits in clinic for results before anyone told me you could do this!

So, my advice. Take time to absorb the news and adjust to the circumstances but be thankful for an early diagnosis x

[Snoopy-uk in reply to lillychick]

Hi lillychick,

Thanks for replying & giving me insight into your experiences..

My husband was diagnosed as having prostate cancer a year ago, so we're not total novices on the hospital app & long waits..we were advised by the nurses to come in 2 days before his app.. For his PSA blood test..but thanks for the heads up & for anyone else reading these posts, it will be helpful..

I've found second diagnoses around, it wasn't as devastating, but still shocking nether the less..I didn't bother to join Any support groups, cause we have a strong family & friends network, but this time I feel we would benefit from other people's experiences..

we have had the initial diagnosis, but have to go back in a few weeks, to find out whether, he will need treatment or just monitoring..

They have suggested a bone strengthening infusion once a month, but I am confused as to why he would need this, his bone scan came back with no visible lytic lesions..

They also suggested biophosphates..

Do you take any medications?

I am worried about him experiencing side effects from the drugs..

Thanks for your time

Snoopy

[marigoldb]

I’m new to this group, diagnosed with MGUS 2016, but now having a down time with terrible fatigue and anaemia, and my balance is affected at present. I’m usually a positive person, but just want to share with someone who understands. Started on Folic acid 5mgs daily and iron liquid, as I find tabs hard to stomach, although on Omeprozole. I’m elderly, widowed, live on my own, so hope to hear some cheerful words from someone.

At least the spring weather is here with promise of more sun and we can mix a bit more soon.

[Snoopy-uk in reply to marigoldb]

Hi, Sorry to hear your not feeling well at the moment..Hopefully the sunny days will help..Get a dose of vitamin D..Will make us all feel better..My husband was shielding, but is back at work..He’s struggling a bit with tiredness..His job is very physical, but he feels better being back at work..He is still having 3 monthly check ups & blood tests..

I actually haven’t been on this site for 4 years..

I found no one really replies or gives any advice so I left..You can contact other groups & Nhs website can give you lots of advice..

I wish you all the best..

[marigoldb in reply to Snoopy-uk]

Thank you so much for replying, don’t feel quite so alone now! I’m retired and as a widow living alone, can sometimes let imagination run away with me! However I have family 2 daughters in Australia, and we are often in touch. Then one daughter and family, and one son and family each about 10 minutes car drive away, so I am really lucky aren’t I?

However the balance issues, I’ve not had till recently, andMarch 2nd went to fall, twisted to try and save myself, large crack, and the head of L prosthetic hip came out, and down I went. Phone nearby so 999and into A&E , put back next am in theatre, and had a week in hospital. So I really have to be careful now!,

I have only just read that neurological issues can be part of MGUS! Sometimes I don’t think it does one good to read too much, what do you think?

Oh well , live and learn, it hasn’t worried me for over 4 years ! So on I go.

Yes I may look up the nhs website if that gives advice. So pleased to hear your husband is back at work. I hope you will manage to have a break and enjoy what I hope will be a good summer. Best wishes to you and your husband.

[Snoopy-uk in reply to marigoldb]

Oh that sounds awful..Did the hospital do any other tests?...I have an under active thyroid & I some times experience balance issues..There could be any number of health reasons like dehydration.I think when were diagnosed with a condition or disease we blame any symptoms on it..

It’s lovely to hear you have family close by, if you need help & support..

I think it is good to keep yourself informed. Reading as much about your condition as possible is a good thing.Just make a note of any questions you have & get the right advice from your Doctor/Nurse..Let them know if you experience new or troublesome symptoms..

Best wishes

[marigoldb in reply to Snoopy-uk]

Hello again, I am being referred to a neurologist, which I am pleased about, especially as my balance is really affected at present. Hope you and your husband are enjoying some sunshine after that awful wind a few days ago. It’s sunny down here in the South today. Best wishes

[Snoopy-uk in reply to marigoldb]

Hey, That’s good news..So glad your doctor Is sending you to see a consultant..Hope you get some answers..The weather here has been awful!..Lots of wind & rain..My husband works out doors too..

He had a desk job for years, but after all his health issues he wanted to be more active..

Wishing you all the best ..