Anyone Else Like Me? Straight in at Stage 3…

Hi , try not to be too despondant , although we all have bad days!I have a similar story ,I broke my back Feb 5th , hospitalzed for a week.Months later pain was getting even worse ,cut a long story short , diagnosed with mm .12 weeks of chemo , finished 4 weeks ago.It has hit me hard after treatment ,very lethargic.I am undergoing tests to see if I am up to stemcell replacement.Bone strengh drip every 4 weeks .They said it would be hard and it is .Got to keep fighting.Spring soon , so potter in garden time.Things will pick up for us.Just stick with it , we have no choice.I am struggling with pain , gp has upped dosage this morning.If you are in constant pain , ask for help.

Hi betterdays

Thanks for your response. Twelve weeks! I was hoping this chemo malarkey would be done quicker than that - I'm not the biggest fan of medications at the best of times. But yep, you're right, all we can do is persevere and do what we're told. I just can't help wondering where I'd be today if the initial GP had arranged proper tests a year ago. I was actually climbing vertical cliffs just before the rib pain began (on the Honister Via Ferrata - now that was fun), but I can't see me doing that in the future. I just can't do anything that puts pressure on my arms, ribs or adjoining bones (bending, reaching, stretching, etc) as they'll snap, so even gardening's out of the question for now (you can come and do mine if you've nothing else to do)! Still, I'm trying to remain as chirpy and cheerful as possible as I realised early on that anything else will do nothing for me and would be awful for those around me as well. Consultant review tomorrow - think I might ask for something a little more potent than the present Zomorph/Oromorph as neither seem to have relieved the pain at all. I haven't looked into stemcell replacement, re-modelling and the like yet as the priority right now is to manage the pain, then my bones need somehow strengthening and stabilising. Anyway, thanks for your comments and I hope things start to improve for you as we begin a new year. All the best.

Chris R

Hi Chris, I didn’t know they did staging in the UK, I’ve not been staged. I was diagnosed in January 2022, and was so shocked and in complete denial, but I cried all night and spent the next thinking of my funeral and crying some more. I had broken my foot whilst out running over fields in the summer of 2021,it just wouldn’t heel, I couldn’t walk, at the fracture clinic they said they were going to run some blood tests. In September they said that I had a high paraprotein of 14 and had MGUS which can be a pre cursor for MM. Following this joy I then had to wait for more bloods in December and then diagnosed. 
I started on the Radar trial, felt so tired, sick, pain. But went into remission in 4 months. Lost all my hair. Had harvesting for stem cell. But after numerous infections it was decided I wouldn’t have it. 
I’ve been in remission for over a year but still have bone strengthner Zometa, still have back pain. Had double pneumonia last year and spent 3 months in hospital, 6 weeks on a ventilator. I can now walk and am enjoying a new normal. 
The most important thing I’ve learnt is to enjoy something every day.

Good luck for tomorrow , please let me know how you get on .

Please ask for pain relief 

I'll certainly try and remember to do so. 

Since my diagnosis my haemo-oncology consultant has always (verbally and in his written reviews) indicated 'Multiple Myeloma IPI Stage 3', so I'm going along with what he says; I know too that most (all?) other cancer-types seem to be graded in stages from 1-4, but I'm not entirely sure why myeloma grades to just 3 - maybe it's because MM people are 'special'?

Your path is very different to mine, and I'm going to mention Zometa to my consultant later today (again, if I remember), as I really could do with something to strengthen my bones. Thanks for suggesting that, as at the moment I'm only able to potter around slowly and with very great care as a fall will undoubtedly snap something else. 

Like you, I have a 'new normal', but it isn't one I can say I'm happy about. Still, I'll plod along and do what I'm told to do, remain upbeat and positive, and take every day and every slight improvement as a bonus.

Thanks for your comments and all the best.

Chris

Good luck for today and let me know how you get on.

Chris, Like you I had been diagnosed with stage 3 myeloma in December last year after a year of tiredness and fatigue. I developed severe anaemia and kidney failure not bone pain. I started my first cycle of chemo on the 4/01/24 and am tolerating it well. Bone saving medication caused hypocalcaemia which is being fixed with calcium. My light chains are significantly lower and kidney function is I'm po roving.  It is hard to be optimistic when things go wrong and you are in pain. There is a lot there can do to help.  Everyone is different but we just gave to learn his to live with it. You are not alone.  

Well, consultant was pretty happy with my progress since being let out of hospital; says chemical counts seem to be moving towards normal, the previously visible plasmacytoma has shrunk a wee bit and is now no longer visible on the outside of my back, and my nausea/flu-like symptoms have gone for now too. I now have to self-administer a once-weekly GCSF stomach injection (a white cell booster), resume my chemo- treatment (ie. on Thursdays, which I did), start taking the lenolidamide and most other meds again, and report back in 2 weeks at our next scheduled review. The cytoma- pains have reduced a little, but I think that might be down to the once-weekly 20x dexamethasone - I have a feeling they'll increase again in a couple of days. So, all-in-all, mostly positives this week, and today has been one of my better days for weeks. Chicken and fresh strawberries for tea tonight - not too bad a week all-round.

All the best and take care people,

Chris