[melanietParticipant]

Hi all. I don’t want to trigger anybody but I’m really scared. My husband has been suffering with fatigue for about a year. He also has some back ache, not constant. He had bloods at the GP and this has shown high paraprotein leval of 23. I understand the normal levels goes up to 19. I’m scared witless that he has MM. He has been referred urgently to hospital. GP says many reasons for high paraprotein levels but all I can see is MM. Any advice would be most welcome. He’s only 54.
Thanks

Melanie

[paulapurpleParticipant]

Dear Melanie,

Try not to be scared. I see he has been referred to a haematologist. They will carry out further tests to determine if it is Myeloma. I was only 56 when I was diagnosed. There are lots of treatments out there now. Remember it’s not curable but it is treatable and many of us manage a fairly normal life.
If he is diagnosed you will find support on her and you may find it helpful to join the UK Myeloma Facebook page; it has many members and it very supportive.

Paula

[lilibParticipant]

Hi Melanie,

I hope that you don’t have to wait long for your OH to have the further tests. This may well be a bone marrow biopsy. That sounds scary, too, but I know from the experience of my husband that it is tolerable. He had no idea that was what they were going to do to him in Haematology – just thought it was taking more blood samples! After having the biopsy, he then walked about 500 yards to where I had parked the car. So although some people say it is painful, it depends on your pain threshhold I suppose.

Once you know for sure what the diagnosis is, it can be terrifying, but there is lots of support available. Initially you will have a named member of the team to answer your queries, and be given information about the induction treatment regime. I was very heartened to meet lots of people who have had MM for almost 20 years, so it is definitely not time to be giving up on your life together. Unfortunately we have to deal with Covid as well, so it can feel like being in extra-long lockdown, but you do get used to it.

I hope that you will get some answers soon.

Best wishes to you and your husband.

Lili

[melanietParticipant]

Thank you Paula and Lili for your replies. You are both very kind. Paula sorry to hear of your diagnosis, I hope you are responding well to treatment. I hope your husband is doing well also Lili. X

[kevinParticipant]

Hello Melanie

All I could say is to echo both Paula and Lili’s posts. I was diagnosed 15 years ago aged 49. Each treatment gave me a full remission.
Best wishes
Kevin

[shropshiremumParticipant]

Hello all.

I have to say, I’m finding these recent posts to be quite reassuring. I was diagnosed last November at the age of 48. It was a huge shock. I had six months of VTD, a stem cell transplant in July and have just had my first month on lenalidamide. As mum to a three and a half year old (who I’d waited a long time for), I hope to be around for as long as possible. 🙂

Here’s to as many years as possible for us all!

Susan

[mulberryParticipant]

Hi Melaniet

Just to say that we were all scared witless around the time of diagnosis, we can all totally relate to the way you are feeling.

I hope that you are not diagnosed with myeloma, but just to say, if you are, things do get better, far, far better than they are around the time of diagnosis. Although I heard the term “treatable but incurable” I only really heard, or took on board, “incurable”. It took several years for the “treatable” bit to come to the forefront, and for me to really define myeloma in this way.

With best wishes Jane

[slimynoseParticipant]

Hi Melanie, I’m just a few weeks ahead of you and your husband. I was diagnosed 5 weeks ago and have just begun week 4 of treatment. The initial shock is so overwhelming and, I have to say it’s still hitting me in waves. What I would say to you specifically at this time, is to contact Macmillan. They have a fund of money (in partnership with bupa but free for us to access) specifically for people going through the process of cancer diagnosis. I have been access to 6 remote counselling sessions and it’s proving really helpful, especially to go through how to talk to my young children about the diagnosis and treatment. Hope it’s something your husband would consider as it’s only open to patients and not family members.

[tony642Moderator]

Hi Melaniet, I am one of the peer support volunteers. I was diagnosed with MM 3 years ago, but in different circumstances but I did not get any advanced warning of it and I collapsed at home. If he has some of the symptoms, even though I know you are scared that it might come back as positive for MM, please get him seen by your GP. If it is MM, then it is diagnosed, then the earlier the treatment can start and therefore a better outcome is more likely. I know there might be a temptation to put off getting tested as it might not be the outcome that you want to hear, but far better to deal with it now instead of waiting until what happened to me when I was blue lighted in to A&E.

I have had a Stem Cell Trasnplant and the cancer has now not been active for over 2 years. Although it is not a curable condition, it is treatable and many people go on to live for a lot of years with it. What is important in my opinion is to have a good positive attitude towards it (which I know is difficult in the eraly days after diagnosis, but you do eventually get your head arounfd it), and also the support of friends and family.

I sincerely hope that it is not MM, but if it is, don`t forget that there is hope!

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