Myeloma UK

New to myeloma

Hi ive been on checkups for mgus for about 3 or 4 yrs..my para protein has now gone up to a level that my doc says is likely im now no longer asymptomatic but full blown myeloma. Im having scans and bone marrow biopsys next week and my bloods re checked and doc thinks its time to start treatment.im quite calm at the mo .relieved in fact that treatment is comming .im only 51 and a grandma and im not in the best of health already as ive had fibromyalgia for 12 yrs and thats my question.have anyone here had fibromyalgia beforebeing diagnosed as one can mask/mimic the others symptoms and my mgus was found only when a water sample picked up bence jones proteins. Im dreading my first infusion on the oncology ward as i think this is when it will hit me.what should i expect when i go how long are you there etc im a very anxious person normally so me being quite calm atm is good and im hoping i dont lose it.would be greatful to hear from some similar people to myself.thanks x rache x

5 Replies
oldestnewest

Hi Rache

So sorry to hear that your MGUS has progressed, I'm sure it's frightening. I can't comment on the treatment as I'm still smouldering/asymptomatic myself after diagnosis 2 and a half years ago. I have been through the scans and biopsies though and have 3 monthly monitoring.

Try to get through the scans and the biopsy before worrying about treatment. Not easy I know at such a stressful time. If you are appointed a clinical nurse specialist, make full use of them and ask them to explain anything you are worried about.

I'd also recommend the Myeloma UK helpline. It is staffed with lovely, knowledgeable staff who will be happy to address your concerns. They also have some very good literature available which I found was not available at my clinic.

Good luck with your biopsy and scans. Take care x

Reply

I was diagnosed with multiple myeloma in 2013 I had just turned 60 and was living on my own as my husband and I had separated so for the most part I attended hospital on my own, for the most part I was ok with this as I had my breast removed when I was 49, I was also told this when I was in the hospital on my own, as I was when I was told I had multiple myeloma, so not expecting any of this. I am now on a trial in Singleton, as the myeloma came back earlier this year. The trial is going ok but there are some draw backs with the steroids, however I am just on a maintenance dose, which is only once a week instead of the twice a week, I am feeling quite positive, but I do sometimes worry as my daughter is having her 1st baby and I would like to be there for her.

Well I think that's enough about my problems for now

Linda

It would be lovely to meet up with people suffering the same problem

A problem shared is a problem halved

2 likes
Reply

I was told in may I had myeloma in a lot of pain but doc want do anything for me as not the level for treatment yet

Reply

This is like reading my near future we are the same age please keep us posted on your journey I have no wise words but i wanted you to know i am keeping you in my thoughts and will be very interested to hear your experiences

Reply

Hi I am 7months post stem cell transplant after having multiple myeloma started when i was 49 now 50 and now in remmsion had bone pain on the right leg and hip joint were the cancer had eaten away at the bone had biopsies which was very painful spent two weeks in hospital with heavy chemo after already 7 months of intense chemo then having another week of radiotherapy 5 weeks ago should have been in hospital 6 weeks but flew through in two still have some Neuropathic pain in the feet and some pain in my hip joint can not lift my leg so just starting physiotherapy and I am monthly zomitma bone strengthing as it can make your bones weak as you may know there is no cure but they can keep it a bay

So depending on your results expect a long uphill battle but you can do it yo yo yo dave

Reply