[docmikeParticipant]

Hi all,
HB dropped to 11.1 before zometa infusion(flu like reaction 36hrs after)
Enrolled for myeloma x1but on CTD
Start 22/4
Mike

[HarmonyParticipant]

Just keep carrying on Mike-one foot in front of the other. Defy it. Do what you have to do. If you’re angry, let it empower you. If you are weepy, let tears be relief-catharsis. My thoughts are with you and with all of us who are on this journey.x

[CarolsymonsParticipant]

CTD put me into remission after 6 cycles, but the side effects did increase as I progressed through the cycles but…we just have to do whatever it takes to beat those numbers down. Hope it all goes well with you. Keep a look out for neuropathy from the thalidomide.

Carol

[docmikeParticipant]

Dear Carol,
Thank you.I am aware about the neuropathy of thalidomide,I hope yours is resolving .
Mike

[ali7Participant]

Hi Mike,

Was diagnosed with smouldering on March 20th and am still coming to terms with what this means.  You seem to have lots of knowledge on the subject and will have to admit that I am somewhat overwhelmed with all the figures.  Decided to join the forum today as am feeling uneasy having had a CT scan last week.  My paraprotein is currently 23 but I can’t remember the other figures as am at work at the moment.  It would be great to keep in the loop and share my feelings with others.  The roller coaster is definitely the emotional analogy to go for!

Regards

Ali

[docmikeParticipant]

Welcome ALI
I am about write retrospective review on my experience of smouldering for 6 and half years which answer some of you queries
Mike

[ali7Participant]

Hi Mike,

thanks for your post I will look forward to reading your retrospective and will keep in contact

Ali

[cartdawParticipant]

hi mike how are you doing have you started your treatment yet.  I am just completing my second cycle and my paraproteins have gone down from 29 to 8 already.  fingers x they stay down . havnt got the latest light chain results but they had fallen before I started treatment from 7000 to 5000.  good luck.

[yvonneseParticipant]

Hi

I know this is a daft question but when you went from Mgus to Myeloma had you any symptoms that indicated you had progressed or was it just based purely on your regular blood test results? I’ve noticed that some people had no symptoms but positive blood tests …….

Regards

Yvonne

[cygnetParticipant]

Hi  – as with so many myeloma related issues, it seems to be very individual as & when you cross the boundary from MGUS to Smouldering & then onto treatment. The more I read & research, the more I find ” grey” areas in terms of this.

I have moved from from MGUS to Smouldering although at my hospital they don’t use Smouldering generally as a category ( interesting approach I know!) They also don’t monitor light chains). However if you ask lots of questions they will acknowledge Smouldering status – their approach is to monitor/watch & wait the same. It was my bone marrow biopsy which tipped me into Smouldering but as my pp was 27 on diagnosis apparently I would never be  have been returned to GP monitoring even if the bmb had come back below 10 per cent.

So in essence I would say it seems to be a numbers game unless you get CRAB symptoms.

I know your appointment is tomorrow so no doubt you are worried  & anxious today about what that will bring – I will be thinking of you & have everything crossed for you.

Love & hugs,

C xxx

 

[yvonneseParticipant]

Hi C

Many thanks for your reply. Its just that time again when blood tests results are imminent. It will be a year since I was first diagnosed as mgus / borderline Myeloma. If I’m stable still then I think I am passed to the Myeloma Nurse who will monitor me. I have had some bone pain but my MRI was all clear. I have noticed in the past 8months that I have had various infections and illnesses that I seem to have problems shaking off. I had a series of bad uti’s and shingles. I had a bad cold/cough from end Nov through to mid January. I have chest infection/bronchitis at moment and on antibiotics. Its like my immune system is not working as well as it normally does. Still it’ll all come out in the wash as they say.

Whatever will be will be.

Fingers and toes crossed.

Love

Yvonne xx

[yvonneseParticipant]

Blood tests all stable. Paraprotein stayed same as last time. All good news. I thought that I would be discharged as that is what normally happens after a year of stable blood tests but Haematologist says she wants to keep an eye on me still so back at beginning of August. Could have been worse but at least can go on my holiday on Monday and really relax…….thanks to all of you that have kept fingers and everything crossed for me Xx

[ali7Participant]

great news that must be a relief.  Definitely go on holiday with a more peaceful mind enjoy your self.

ali

 

[Anonymous]

Fingers and toes have now been uncrossed have a lovely holiday xx

 

[cygnetParticipant]

Happy holidays – chill & enjoy!

Love & hugs,

C xx

[Author]

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