[kpParticipant]

Hi Susie

Glad to hear all went OK, although I am sure you will be waiting to hear back from the Consultant.
It  is such a waiting game this MM isn’t it.

Sorry you are still in pain with sciatica.  Hope all is well when he rings you back.

I have a small heat cushion which I warm in the microwave and put in the small of my back when sciatica kicks off.  The warmth is very soothing so I think it helps.

Best wishes

Karen

[kpParticipant]

Well folks, I have not been on the site for a few weeks, I had asked for a second opinion as I was told that I would definitely be on treatment within 18 months and couldn’t understand how that could be predicted in MM. Sooooo upset by the news. I had really thought that I might stay Asymptomatic for some years yet.

Anyway, still definitely asymptomatic but the numbers are going up, on six weekly monitoring now.

No treatment for the Haemachromatosis because the Gastro Doctor said ” that is the least of your worries” .

My (I think ) Ferritins over 800 but below 1000 so he happy to watch and wait as no sign of liver damage at present and because I am anaemic the treatment/phlebotomy could make me unwell, tired etc.

Onwards and upwards, I wish you all well

Karen

[HarmonyParticipant]

Hi Karen,

The ‘not knowing when’ is indeed the hardest thing about our smouldering condition. Whilst most people have a degree of sensitivity and empathy, we also have to encounter those such as your gastro-doctor who fail to exercise tact! Sometimes, it’s almost as if some people want to see us as being different i.e this has happened to us but can’t possibly happen to them and I find myself wanting to say ‘I was just like you. I was fit and healthy and getting on with life so there are no guarantees for any of us.’ I recognise that I’m probably oversensitive but this is my perception nonetheless.

I don’t understand how they can predict the 18 month thing either. They should at least be able to explain how they have reached this conclusion. I feel your worry – but please take comfort in the fact that there are some really effective treatments available out there.

Onwards and upwards – let’s carry on with life!

[kpParticipant]

Well folks, I am in the middle of the second cycle of VTD as the MM went active just before Christmas. Coping with the treatment fairly well although it has been an anxious couple of months. I have a new full time job waiting in NHS clinics!!!

I don’t visit the site often at the moment but do hope everyone is doing OK.

Best wishes

Karen

[HarmonyParticipant]

Glad you’re coping so well with the treatment-I know what you mean about waiting and the car park costs are pretty astronomical to boot! Keep moving, one step at a time-carry on! My thoughts are with you.x

[docmikeParticipant]

Hi Karen,
Sorry to hear your news but you seem to have accepted your fate and indeed got on a good regime(?outside a trial ?).
I am just about to have BMB today and pet scan tommorrow ;so I think I am not far from treatment.
pProtein 38 hb 11.9
see smouldering forum
Regards Mike

[kpParticipant]

Hi All,
Just about to start 6th cycle of VTD and have tolerated treatment reasonably well although the side effects create their own challenges. I have had a good response and have been referred for consideration for a SCT.
So next big hurdle we have to face is the decision on next steps for treatment. Other people posting on the forum seem to have had very variable experiences/outcomes from SCT.
I read an article recently about “chemo brain” and for sure I have had problems with concentration. I found it has interfered with my ability to complete pieces of work ( everything takes much longer to finish) and I haven’t been driving.
Best wishes
Karen

[bernardParticipant]

Hi Karen. SCT isn’t easy but hopefully in the end worth it

[kpParticipant]

Hi All, I am now 107 days post SCT. You are so right Bernard, it was an ordeal but is so worth it. The care I have received has been first class from everyone I came into contact with as an in patient and an out patient.
I was told this week “no free light chains, complete remission” so I am hopeful of a decent period MM free.

I guess the effects of the treatment are incremental as I hadn’t really acknowledged how poorly I have felt this year until a couple of weeks ago when I suddenly realised how well I feel. I have got my normal life back.

Onwards and upwards, hope everyone keeping well

Karen

[finnParticipant]

Hi Karen

Great to hear that your SCT was so successful. I had mine two years ago and I can remember how I also realised some months after it how poorly I must have been as I suddenly felt so much better. It keeps getting better and better and about a year after SCT I felt completely normal, if possible even better than I had felt for a number of years. Then again, I had had back and rib pain for nearly 10 years. I am still in partial remission and it feels great. Hope you will have a very long remission. Best wishes

[bernardParticipant]

Great news Karen. I was lucky enough to go back to work about 6 weeks post SCT and I haven’t looked back. You should find yourself getting stronger each day and enjoy this time. As one of my consultants said to me ‘it doesn’t get better than this’ so enjoy it. It’s a pain having to do Zometa every month and each quarter my anxiety levels go up when I get my bloods checked but it makes me savour the days I have now. We all don’t know what’s around the corner!

Healthy living all

 

[kpParticipant]

Well, I am now 6 months  post SCT, no meds, monthly appts for Zometa and 3 monthly appts for monitoring. Feels very strange not to have two or three appts a week but good to feel well. I still have days when I feel very fatigued if I have overdone it the day before but this gets less as time goes on. I am finding it hard to lose the post SCT infection worry so still being cautious and using hand gel etc. Another monitoring appt week after next so anxiety building around the “has it come back” question.

I guess it will take some time to get used to this new way of being. I read a post which said “live in the moment” which feels like good advice.

Onwards and upwards

Karen

[Author]

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