Hi all am a newbie

Hi Deeroonie and welcome to the forum.

Yes, it can feel overwhelming at first. For me, it was psychologically traumatic to get a myeloma diagnosis. It took me a few months to get over it.

You use the phrase "what's to be my future situation", which implies that you have just been diagnosed. Therefore, a bit of factual info first.

The treatment typically goes on for around 6 months: 4 months of chemo ('induction'), maybe a stem cell transplant, then 2 more months of chemo ('consolidation'). Not everyone has the transplant (I didn't).

That is a pretty lengthy time period, yes, but one just gets on with it and it becomes a new normal. The side effects vary hugely from one person to another, but the single most common side effect is fatigue. I was only in my midfifties, and I suddenly needed a daytime nap most days.

That was in 2023, and I have been in remission since then. The fatigue has greatly reduced: I work out in the gym and am generally physically active (yesterday I walked 16km), I work, and I go on lots of holidays. Quality of life is genuinely pretty good!

You may have been reading about how long myeloma patients tend to be in remission for. Please bear in mind that a lot of online info is out of date: new treatments have been developed - and are being developed - where remission is significantly longer.

tt would be stupid to pretend that it is always easy, but you can do this!

I think overwhelmed is an understatement. It took me about twelve months to adjust to the fact I had Myeloma.  Hearing phrases such as ‘treatable not curable’ made me feel very daunted. I have two kids in uni who have already seen me go through cancer twice before so I was worried this would cause them additional stress too.

For me, I was totally asymptomatic, a routine blood test for thyroid levels picked up high protein and so the journey began. Even though light chains etc were very high they eventually decided to wait and see.

This status lasted for twenty two months upon when they did another MRI and discovered fractures in my spine and lesions in both femurs which they think were probably there all along just not seen on earlier MRIs. There was no rush, in fact I went on a family holiday first, and treatment started in June last year. I underwent stem cell transplant twelve weeks ago.

For the largest part this treatment has been very doable, the stem cell transplant, more specifically the chemo Melphalan, was tough, I won’t lie. I spent ten days in hospital but had a week in cottages run by a charity, attached to the hospital immediately post transplant.The gastrointestinal impact was difficult, I tried numerous antiemetics with limited success. On a positive, it lasted just six weeks and I was fine for Christmas. Also, my bloods recovered very quickly, by day nine they were bouncing back. Everyone’s journey is different, some tolerate the SCT better than others. 

Ive restarted the mild chemo for the last two phases so, hopefully, will be done and dusted by mid March. My main issues are mostly steroid related with increased hunger, weight gain and shaking. I have changes in taste and some peripheral neuropathy but nothing I can’t deal with. I’m hoping that when I go on maintenance these will dissipate a little. I would like to add that despite these side effects I’m doing all normal activities including running a business, decorating and dog walking. I am a very active person who does 18-20k steps daily. If you look at similar stories many people are able to return to work, gym and some level of normality. Myeloma is mostly seen in the older population so, naturally, ‘normal’ activity is going to be  different to those in their twenties. At 57 I was told I was quite young but there are younger.

I think it is a life changing event, no matter what your personal experience but there is life beyond diagnosis and treatment. I’m sure you’ve also been told this but many people live for decades after treatment and there’s a lot of cutting edge treatments becoming available for Myeloma. I follow some of the research sites and support groups on social media to keep up to date with what’s available. 

I hope this helps, try not to get pulled down by what could happen. I did for a long time but I have come to terms with my status and, generally, I keep myself busy and distracted. I find this site very useful, cancer, no matter what type, feels very isolating, there’s nothing like being able to ask someone who has experience of your situation. You’re stronger than you think!

Hi  Deeronnie     i  am sorry to read you are overwhelmed,     but so understandable,   i was  diagnosed at 66  on my birthday and  retirement day!    now  68,     living a good life in Remission,   2  years post Stem cell transplant,   as Chicken2  as indicated,   its tough,  but worth the journey,   part of the strength came from a positive mindset,     great support from family and friends,   and of course incredible care on the NHS       the 4  cycles of DVTD    got my  blood results in a good place,  then came the stem cell harvest,    2  long days in a chair as they extracted the plasma from me,    enough for 2 stem cell transplants,   about  3-4 weeks later,   came the   conditioning with the Chemo Melphalm ,  and next day the transplant,   do not wish to overlook i had a PICC line fitted,  before the   treatments,   this was in Birmingham,  and they i asked for transfer to my  treatment hospital in Worcester,     i   stayed 10 days in High care,   this was by far the hardest part,   fatigue,   low immune systems          stomach bugs,    as the lowest   5  iv  bags waiting to go in me!    but i pushed myself everyday   to    shower myself,  get our of  pyjamas,       but inevitably i needed to sleep,      my appetite  was  poor,  and i needed protein  shakes,    nothing wrong with the hospital food,  but i just could not  eat,   my   wife brought me   smoothies,   ice creams,     fresh prepared fruits,         i would  walk around my room with IV   following me for   10 "laps"    they the news,  "   you  can go home"    i needed a wheel chair to get me to the car,   but every day    you get a bit better,   a   bit of food more often,    cravings were  satisfied   by my wife's support,    the KIDS    (   2 in Australia)   were   worried,  but   we  were very honest with them.     no    visits to home for about a month,  as your immune system is  rock bottom,          then  2 more  courses of  DVTD   treatment,  and  blood tests  and " you are in Remmision "  thats now  2 years ago,      like chicken i  walk the dog,     i still get fatigue,  but  i  manage what i can do,   the grandkids   bring so much joy to us,  and fun,    every day  is a blessing and so worth it           i hope this helps a bit,     Kevin  AKA  Vespa