janeb

  • Thank you Peter for your inciteful response which confirms our understanding of the trial.

    We see the consultant in June for the 8 week bloods to see how PPs are doing and will discuss the trial with her as it hasn’t been discussed previously.

    Interesting that you were advised that the trial closes at the end of the year. Whilst we all hope t…[Read more]

  • Hi Peter

    thats a shame to go through the  screening process and not get accepted onto the trial. It sounds like your PP levels are not static like my husbands.

    I assume the criteria is to have a PP level of 30 or more?

    We are very interested in the trial and like yourself, we hope to be considered if and when my husbands PP levels rise above…[Read more]

  • Hi Peter

    I wondered if you had made a decision about the Daratumumab trial? It was mentioned at my Husbands review today. PP up to 29.7 so May just meet the eligibility criteria.

    Can I ask what your PP levels are.

    I think we will go for it if eligible as PP levels have steadily creeped up over the last 2 and a half years  since diagnosis. He…[Read more]

  • Hi Peter

    it did go up to 30 but doesn’t remain stable and went down to mid 20’s. It has been creeping up again slowly. Next results due 1.2.18.

    I would be very interested if you hear of any trials

    Jane

  • <span style=”color: #000000; font-family: UICTFontTextStyleBody; font-size: 17px; -webkit-text-size-adjust: auto;”>Hi peter. </span>
    <div style=”color: #000000; font-family: UICTFontTextStyleBody; font-size: 17px; -webkit-text-size-adjust: auto;”>My husband didn’t get accepted for the trial at Nottingham as the trial had closed. He had repeated bl…[Read more]

  • Thank you both for your responses. I understand this is a worldwide trial that has been recruiting for some time. I seem to recall reading some preliminary results but I can’t find the reference!!!

    From what I have read my main concerns are that if this is indeed a game changing drug then is it better to wait until the disease progresses before…[Read more]

  • Hi

    my husband was diagnosed with SMM Nov 15 aged 44. Had just over 12 months on ‘watch & wait’ regime. PP Levels have recently elevated and  now nearing 30. Consultant thinks he may be eligible for a clinical trial using daratumumbab available at Nottingham.

    Do any Smoulderers have any experience of this trial/drug?

    many thanks

    jane

  • janeb replied to the topic Curcumin in the forum Under 50s 5 years, 5 months ago

    This sounds really interested and I  am sure a lot of us would like the details. Could you contact Myeloma UK to see if anyone took minutes on the day?

  • Hi. Anyone with SMM any advise on car insurance? Husband diagnosed on Nov and still working/driving and hasn’t as yet notified his insurance company. Wondered if this was necessary as not receiving treatmemt as yet.

    Jane.

  • janeb replied to the topic Medical insurance in the forum Off topic 5 years, 7 months ago

    Hi jean

    i have read your recent posts and was interested to read that when your husbands PP rose he went straight to SCT and not chemo. Is that right? My husband was diagnosed with SMM in Nov aged 44. Just trying to get our heads around the condition and possible future treatment. Would be more reassuring to know he possibly wouldn’t need chemo…[Read more]

  • <p style=”text-align: left;”>Hi Cygnet</p>
    <p style=”text-align: left;”>Would you kind sharing what Curcumin supplements you take , the dosage and where you get them from?</p>
    <p style=”text-align: left;”>thanks jane</p>
    <p style=”text-align: left;”></p>

  • Hi

    my husband was diagnosed with SMM in Nov last year age 44.  PP and all other blood levels remain reasonably stable. But latest bloods show that cretanine  levels have gone above normal range indicating some renal impairment. We see the Consultant tomorrow but are very concerned that this may be the MM becoming active. Anybody any experience t…[Read more]

  • janeb replied to the topic newly diagnosed in the forum Newcomers 5 years, 9 months ago

    Hi Helen.

    My husband diagnosed with SMM aged 44 Nov 15. Still coming to terms with the diagnosis.

    PP currently 23.8. Been advised that may he be eligible for clinical trial with Daratumumab which is a new monoclonal  antibody if/when PP rises above 30. Does anybody have any experience if this drug?

    jane

  • janeb became a registered member 5 years, 9 months ago