Possible Myeloma, any advice?

Hi,

I’m sorry to hear that you are having to go through this. I had a similar experience I had pains in my sternum and was told it was costacondritus - inflammation of the cartilage. The pain initially went away with pain killers. It came back had stronger pain killers until nothing was working. I was referred to a specialist and after first scan was told I had lesions on my sternum. I asked if it was anything to worry about and was told no it’s usually the other blood tests if they were abnormal it would be a different story. I had some further tests and went in to see the consultant as usual….. he started reading out loads of numbers and I thought what’s going on and the next thing I knew he said you have myeloma a type of blood cancer. It was the 23rd December and I had to tell my wife and two young children as I couldn’t hide it. Luckily I was referred to one of the UKs leading specialists for myeloma and he talked me through things. That was 3 and a half years ago. The first year of treatment was really hard but things gradually got easier. I had a stem cell transplant last August and have been in controlled remission since then. I hope this goes some way to reassuring you that whilst it’s obviously a huge shock at the time it does get easier and there is light at the end of the tunnel.

in my experience being given the diagnosis was the hardest part as I didn’t expect it but once diagnosed there are now a good range of treatments that will help tremendously with treating it.

i hope you get a straight answer soon and as I’m sure you’ll find out there are many people who have been through this and will have lots of advice.

Hally

Hally, thanks for getting in touch so quickly and the reassurance your story has given has been fantastic.

Not knowing is so damaging, I never learned my lesson from the lymphoma scare, now it's simply repeating itself after this latest shock. 

I don't feel sorry for myself, don't think why me. I just want the facts, letting me tackle whatever life brings thereafter.

Thank you so much for the kind words, good luck on your continued recovery  

Stu

Hi.   Ayrshire50m.   Vespa. Here.   AKA.  Kevin.    The diagnosis will come from the tests.     Did you have blood tests ?      And I guess a Bone marrow biopsy has been mentioned?       Whilst they all are scary. They will all go to give your consultant the picture needed.    I have.   M. M.    And I am now 100 days post Stem cell transplant and doing great.    The. Diagnosis for me was 5 separate blood tests. And a very very bad skin condition prescribed as Scabies. So I lost about 2-3 months of diagnosis time.   Results came on my 66 th birthday. My retirement day !      Monday morning Doctor calls me !!    Suspected. M. M.   Fast track to. Cancer check. Within 7 days I had.    X. Ray for my hip lesions.  Full body.  M.  R. I.  And a bone marrow biopsy!      Then specialist.  Haematologist meeting.    Fast track treatment called. DVTB.     This is now July 23.   Stem cell harvest in. December.    Stem cell transplant in. Feb 24.    Now in remission on last treatment next week. Then maintenance drugs.    Hiip still not great so now they work on fixing this.     So please my message to you is    Wait for full diagnosis.   The treatment for. M. M.   Is very good. Groundbreaking new drugs both in Scotland and. England.   No pain in the treatment. The pain comes in how to share with family!      I am so grateful for the care given to me so far      And can not believe sometimes how far I have come.       A long message but I want you to know the efforts are worth it!!     Kevin.     Good luck.  Come back to us. Please  

Kevin, everything you mentioned is exactly as my doctor described. Everything is so quick which I guess is also a comfort. Just receiving the news, so out of the blue when your already waiting on something else just completely through me off track. Sent my mind into overdrive, panic almost

Thank you so much for the positive, informative and calming advice 

.wishing you well.

Stu

Hi Vespa, just would like to say your story is nearly a mirror image of my story. Just went to my usual blood donor session, was told I couldn't donate as my iron levels were very low, next thing I had a blood test at my GP thinking I would be sent home with iron tablets then everything was like a whirlwind!  I was fast tracked to hospital,  treatment started for MM.  I had a  SC transplant in September 23 and am now in remission on a maintenance drug.  The hospital has been fantastic  but the main thing is to talk.  I had very dark days and still do occasionally  but my family has been amazing and this forum has been comforting being able to share experiences. The very best to all who are going thru this just now. Things really do get better!  

YES  Bunky,    talking is so  important,    for me the staff in the  Haematology  department  are all  Angels,     We have a laugh sometimes,      the  Consultant    has good humour,  he said to me on the first consultation,  when he of  course   confirmed that it  was MM  "    you are young and fit,   we will attack this aggressively"     (   66 years old )    could not believe that i was not on any   drugs for anything,     saw him this week   as we tackle the next step  of   hip Lesions,   he   does  what he says he is going to do,  and   i also found the  support in the forums good,   particularly from  Thehighlander      who    as  gone through a lot !     Stu    please keep us informed,     we all appreciate that  other things become your priority,   but we all have some sound advice,  even if it  is  "   what do i  take into hospital with me?"    i had dark days/nights post SCT  in hospital,   some  days i can not even remember,   but   my  positive  mindset  told  me,  this is temporary      !         little   victories   become so important,        and   food for me,  was  important,  my  wife support to bring me things,        Kevin  

Hi Ayrshire50m

my husband was diagnosed with high risk MM last year after suffering extreme fatigue and back ache.   Sadly it took a while for the doctors to diagnose.  He was offered a clinical trial and his treatment and care has been amazing.   I think initially the ‘not knowing ‘ is difficult but once he was diagnosed and we got over the shock we had a plan!  I will be honest it hasn’t  been easy.  Had his stem cell transplant in Feb so just coming to 100 days post transplant  and waiting for the next stage of treatment.   He is doing really well at the moment .  Just remember there is a lot of love and support out there for you.  You will have your good and bad days but you must never give up hope.  There are so many new treatments .  I have also logged on to Myeloma Uk which is the official site for MM this I found really informative.  I am sending you my very best wishes and a huge hug for your journey ahead xxx

Thank you so much. I was visiting some really close friends last night to share and confidence in them. I shared with them not only my concerns and fears but the hope I have and how fantastic the responses I've received in this forum. From the bottom of my heart, I can't thank you, and everyone else enough. 

• Reading these replies of personal experience has moved me, way beyond anything I couldve expected or thought i was capable of even feeling. 

What a week, for so many different reasons. .

Thanks again, wishing you both health and happiness  

Hi Ayrshire50m and a warm but late welcome from me. It’s great to see some of the group members picking up in your post as honestly, there is nothing better than talking with others who have the ‘Myeloma‘ T Shirt…… and definitely more helpful than a high percentage of the stuff you will find on Dr Google…..

I help out around our various Blood Cancer groups and I don’t have Myeloma. But I was diagnosed way back in 1999 at 43 with a 8 in a million rare, also incurable but treatable type of Low-Grade Non Hodgkins Lymphoma then in late 2013 a more aggressive type of Non Hodgkins Lymphoma came along with me now reaching Stage 4a so although my Blood Cancer ‘type’ is rather different I do appreciate the challenges of this journey rather well.

Along with this amazing group of people there is lots of support out there that will help you navigate this journey. The word cancer is initially a stark reality check….. but the more you talk with people who understand and who can empathise with you the better the journey will get.

You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

We also have our Ask an Expert section but do allow a few working days for a reply.

For good information do check out Myeloma UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 0800 980 3332

Your community name suggests that you may be in Ayrshire…… if this is so you will have a Maggie's Centre in your area, these folks are amazing and most centres do run monthly Heamatology Support Groups, the one I attend in Inverness does have a few folks with Myeloma in it so worth checking.

Always around to help more or just to chat.

Hi Cherrylips,

All the best for your husband, and glad that he is doing really well.

I am also high risk. I couldn't have a stem cell transplant, but I have gone nearly a year in remission so far and I have been getting on with my life. I take maintenance chemotherapy, which causes some fatigue, but I still go on holidays and I went to a music festival yesterday. For me it's a new normal.