[grahamvegasParticipant]

HI EVERYONE, THIS IS MY 1ST POSTING. MY HUSBAND WAS DIAGNOSED WITH SMM IN JUNE THIS YEAR AFTER 6 MONTHS OF TESTS. HE WAS REFERED TO A HAEMATOLOGIST BY GP FOLLOWING A LOW WBC COUNT. HIS PARAPROTEIN WAS ORIGINALLY 19 AND IS NOW STABLE FOR A FEW MONTHS AT 14. IS THER ANYONE OUT THERE WHO HAS A SMM DIAGNOSIS, AS THERE SEEMS TO BE EVEN LESS INFO REGARDING THIS. WE ARE STILL TRYING TO GET OUR HEAD AROUND THIS LIFE CHANGING NEWS. MY HUSBAND IS ONLY 51 VERY FIT AND HEALTHY AND HAS NO SYMPTOMS WHATSOEVER EXCEPT SOME TINY LYTIC LESIONS WHICH SHOWED UP ON A CT SCAN, BUT FOLLOWING A PET SCAN DID NOT SHOW UP AS A SO CALLED HOT SPOT. ( VERY CONFUSING) BECAUSE AGAIN NO SYMPTOMS AS HE SWIMS AND EXCERISES 3 TIMES A WEEK.

I GUESS WHAT I AM PARTICULARLY CONCERNED ABOUT IS 1) IS CHECKING HIS PARAPROTEIN LEVEL EVERY 2-3 MONTHS SUFFICIENT ENOUGH TO EARLY DETECT ANY PROGRESSION TO MM? AND 2) IF LYTIC LESSIONS WERE CAUSED BY MM (APPARENTLY INCONCLUSIVE), THEN HOW CAN THEY KNOW FOR SURE CONDITION ISNT ACTIVE?. I GUESS I AM JUST SO FEARFUL OF ADVANCEMENT OF HIS CONDITION NOT BEING PICKED UP ON. IS ANYONE OUT THERE IN GOT A SIMILAR DIAGNOSIS OR COULD ANYONE SHED SOME LIGHT ON OUR POSITION. THE OTHER CONCERN WE ALSO STRUGGLE WITH IS HOW LONG IS HE GOING TO GET BEFORE BECOMMING ILL?

THANKYOU SO MUCH

JENNIFER. (HUSBAND ALAN)

[webteamKeymaster]

Hi Jennifer
I have moved your post into its own thread as it was getting a bit lost way down in the other thread. Hopefully you should see some replies now.

Regards
Stuart
Myeloma UK WebTeam

[jmsmythParticipant]

Hi Jennifer

Welcome to the club no one wants to join. My husband has SMM for 6 years. MM diaganosed while looking for something else. Frank was monitored every 3 months and his PP rose to 34 ( I think). Lesions were found in his ribs but radio therapist decided radiotherapy not necessary but consultant decided that treatment was necessary so in June he started CDT and hopes to have SCT in new year. LANs consultant will keep a close eye on him our consultant told us that they take other thi gs into account besides PpP – kidney function, light chains etc. If you do a search for Ted, he has had SMM for, if I remember near,u 7 years and is still doing well. If he sees your post I'm sure you will get I of from him.

I won't tell you not to worry, because you will, but please use the forum for help advice and friendship, the are a great bunch of people who will help you and Alan through your journey.

Let us know how thi gs go and best wishes
Jean

[GillParticipant]

Hi Jennifer

I am sorry you have not had more answers to your post I think it maybe because you have asked questions that us laymen cannot answer. I am sure that the specialist team will be able to help you regarding all your questions and you will certainly get support from the motly crew (me included) that post on here.

Kind regards Gill

[angeParticipant]

Hi Jennifer

I understand completely how you feel. I am also 51 and just been diagnosed with SMM and will have 4 weekly blood tests to monitor the paraprotein. Mine is around 37 now but luckily I have no symptoms yet. If you are unsure about whether the monotoring is enough I would ask the consultant or nurse at the clinic.

I wish you both all the best.

Andrea

[tomParticipant]

Hi Jennifer

Mine is just a welcome as I went straight into MM 🙁 dint have chance to smoulder (or I dont think i did)

Stay Strong and Good Luck on Alan's road to remission.

Love Tom "Onwards and Upwards" xx

[teds31Participant]

Hi Jennifer, I have had smouldering MM for about 6years and as yet have had no treatment, I know how you both feel, but you must have faith in the consultant and his team. In my case we hardly think about it untill it comes to the 3monthly check then we both get nervous. I have just had my checkup and I have had back ache for a few weeks but they say its nothing to do with MM and is probably from my bowel problem, yet I did get an immediate X-ray and am waiting for the results.
There is a paper explaining SMM and I printed it out and I show it to my family so they understand what the problems are if you go to the site below and click on veiw, youwill get a full page paper. Good luck and keep on the site let us know how you go. Ted
http://www.myeloma.org.uk/patient-services/myeloma-uk-publications/infosheets/smouldering-myeloma/

[Author]

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