New diagnosis

Hi again Dap and well done navigating across to this corner of the Community.

As I said in your post in the New to Community area I don’t have Myeloma but for some context I was diagnosed way back in 1999 with a very rare (8 in a million) incurable but treatable type T-Cell Low-Grade Non Hodgkin’s Lymphoma……. eventually reaching Stage 4a in late 2013 when a second, also rare fast growing type of T-Cell High-Grade Non Hodgkin’s Lymphoma was presenting….. so although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

Myeloma like my 2 types of rare Lymphomas are very treatable….. yes some of the treatments can be demanding but on the whole do-able.

Back in 1999 when I was first diagnosed at the age of 44 with my first type of Lymphoma my median survival was set at 3-5 years was on the information I was given…….  our daughters were 14 and 18…… over the years I have had various treatment especially when my second more aggressive Lymphoma appeared……… but we went on to see our 2 daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters…..

I turned 70 back in Nov last year and I am coming up to 10 years since my last treatment.

I am living a great life and we continue to look forward to what else life has in store for us to enjoy…….. this can be done.

There are a few active members in the group at the moment so let’s look for them to pick up on your post.

Do also click on the main ‘Myeloma Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.

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.

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

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups, the one I attend does have a few folks with Myeloma in it so worth checking.

Always around to help more or just to chat. 

Hi  DAP     You are not alone on here,  and yes the diagnosis can be   daunting,  but i remember post bone marrow biopsy and   first meeting with the haematologist,  my   wife and i came away from that first meeting  feeling better than before we went in,      the treatment  started the same day,  with meds taken home,   its a tough journey,  but  please  understand this is not a " death  sentence"       i am now 2 years post stem cell transplant,   was also 66 when diagnosed,     you may be allocated and CNS     nurse specialist,  and mine  spelt it out for me ( us)   what would happen,        the treatments are easy usually    meds and injections,    you made a good start coming to this part of the community,  you will get good advice,  but the best advice is from the professionals,    and i had / have great care on the NHS   in my area,      Worcestershire       Kevin   x

I just saw your post that I had to reply. I felt like you exactly the same, but that is a phase that you go through and you will come out of it and feel more yourself especially once treatment starts. Choose one of your friends or family and talk to them about how you’re feeling or maybe like me you want to be distracted plan some nice things even if it’s only eating a bar of chocolate.  the weather is beautiful at the moment go outside and enjoy that sunshine and look at the lovely spring flowers. It’s a lot to take in and your whole body and mind goes into shock, but that is temporary. It will be OK. all the best

Hi Dap.

Although I know about you only the message that you sent above, I believe that you are stronger than you know.

I was in your situation. Shocked and traumatised. Diagnosed out of the blue with myeloma.

That was in 2022. It took me a few months, but I got over it. 

After treatment (we can explain what your treatment is likely to be) I went into remission, and I am still in remission now.

I came back from holiday last week and will be going on another trip in a couple of weeks. I went to the gym today and cycled flat out for an hour. 

In short, myeloma is something which people can and do live with. It is not a death sentence. 

I won't pretend that it is always easy - there are often side effects: although they vary from person to person, we can explain those too.

Treatments have improved enormously. Even since I was diagnosed, many new treatments have been approved.

You have got this!

Hi Dap, I think everyone reading this will recognise what you are feeling at the moment. A cancer diagnosis is a terrible body blow. I cried and physically shook so much at appts that counselling was discussed repeatedly. Eventually I  took them up on the offer of CBT and even though I only had one long session (my choice, I can go back when I want) it gave me enough tools to deal with the impact of the disease on my mental wellbeing. As I was told at the time, I’m the same person I was before finding out I had Myeloma, that really put things into perspective for me. The other thing to say is that the brain has a great capacity to deal with bad news and you’re still in shock stage atm. As someone else has already said, you’re stronger than you think. Finally, you don’t have enough information atm you may not even need treatment yet if it’s very early on or ‘smouldering’. When you have all the results your consultant can go through treatment options, answer questions and reassure you. This is an area of medicine that has lots of research, new treatments and ever increasing life expectancies. Hope you start to feel better soon.

Thank you, reading these really help me,I'm glad I made the plea

Thank you...I feel .much less panicky. Thank you for taking the time to respond

Yes, the waves of fear are the worst.  Just want to hide u der a blanket. Thank you for taking the time to reassure  me. 

Thank you for taking the time to respond. It as helped me

Thank you..might need more than a little help to get through this.