about to start treatment

Hi Mel,

Being daunted and overwhelmed is more than understandable! 

I was traumatised when diagnosed in 2022 out of the blue, and it took a few months to get on with life. Nowadays, still in remission, and mostly enjoying myself! (You'll find my story among the posts on this forum).

Although there will probably be side effects, you'll get through them. All the best. Please ask us about anything that you want to know.

Hi MelC26 , it's Sue here , sorry to hear you find yourself in this position but it's very good to meet you .I hope I can reassure you about the journey ahead .

You and I have followed very similar journey , just on different time lines  . I was diagnosed with MM August 22 but was MGUS for 5 years previously.  I was monitored every 3 months and when I did turn the corner to MM it was picked up and acted on very quickly . I had 4 cycles of Chemo followed by stem cell harvest and transplant . I'm now 3 years in remission and looking forward to my 70 th birthday on Saturday. Being honest it is a roller coaster ride , everybody reacts differently to treatment . I leaned heavily on my husband and nurse specialist to get me through . I'm a retired nurse and accepting help was not something that came naturally to me    .if you can keep a little exercise every day , get out into the fresh  I found that the routine of apts and treatnent regularity kept me busy and reassured . Tick of each apt on a calender and congratulate yourself on each one completed.  Good you are having therapy to help with anxiety and feeling overwhelmed . This is a great group , always here to listen. 

Best wishes Sue 

HI MelC26   and welcome to a very helpful Forum,  but sorry to read about the diagnosis,   i am male  68,   2.5 years post Stem cell transplant,  and like you,   overwhelmed when diagnosed,   the treatment,  once  confirmed,  after MRI and Bone  biopsy,   i went home with a  load of tablets and an ongoing 3 time a week visit to hospital,   Monday  always blood tests,   tuesday and Thursday   treatments,      please note,  not  all treatments are chemo,    injections and  infusions,    consider applying for a blue badge,   my hospital   gave me  a  free parking pass,  for all cancer patients,      i had DVTD, course     3 weeks of treatment,   1 week off,  then the cycle started again,  for   4 months,  then stem cell harvest  and then Transplant,  this took about   8-9 months,    most of the side effects were Fatigue,    sleep when your body tells you to!!    exercise,   walks,  try to live the normal life,     like others that will respond  we live good lifestyle,  its not the same as it was,  but   its is worth the effort,  and  it is right to be anxious,   we probably grew up thinking  MM  is a short life sentence,  that is certainly not the case,  and new treatments   help us to fight it,    you will need help on this journey,  its tough,  but  totally worth it,  we both of a lot of life in us!     lots of love  Kevin,  AKA Vespa x

Hi MelC26 i was diagnosec Feb 24 with mm i am high risk came out of the blue  had chemo  then sct  it was hard to accept my anxiety levels where sky high had to see a physcologist which helped thrn had to gomonto antidepressants every nodynis different with treatments etc  i amm know in remmision and trying to.live the new normal wish you all best x

Thanks everyone for your replies. It is super helpful to hear how you've got through the treatment and seem to be doing OK - makes me feel a little less isolated. All the best X

Hi MelC26  

I am Mike and I look after our various Blood Cancer groups. it’s great to see the group members picking up in your post.

I don’t have Myeloma but I have been in my journey for over 26 years with 2 rare, hard to treat types of T-Cell Non Hodgkin’s Lymphoma's first diagnosed when I was 43.

I have actually had 2 Allogenic (donor) Stem Cell Transplants (June 2014 then Oct 2015)….. yes challenging but do-able….. back in late 2013 I was told that if the plan that was being put in place did not work I had about 2.5 years on the clock….. proved that one wrong,

I am now just over 10 years 6 month out from my last treatment, turned 70 last Nov and continuing to like a great life.

Amazing Mike - inspiring to hear this 

Hi MelC26

I was diagnosed in 2012 aged 52 and I can well remember those feelings of anxiety and overwhelm. I had a stem cell transplant and came out of hospital on July 4th 2013, an easy date to remember as it’s my son’s birthday. 
The SCT lasted until December 2022. 
I am on second line of treatment now. Very excited as against all the odds I start receiving my pension at the end of the month. 
I always accept any offer of counselling and have seen several over the years. I read somewhere it can lead to longer remissions. 
Recently I have started doing breath work, which is absolutely heavenly. 
It is all daunting when you are in the foothills and looking at the mountain of treatment before you, but it is doable and there is a good life to be lived when you come down the other side of the mountain 

Best wishes 

J

Thanks J. I like the analogy of the foothills and the mountain - that sounds exactly where I am right now. Your story gives me hope. Good luck with the second line.