[janebParticipant]

I was only thinking about you this last week!! I’m sorry to hear that your PPs have risen. My husband has his PP results and MRI results last week as his PP had risen to 41….thankfully down to 37.3 and no lesions found on MRI. We are still considering the treatment offered by COC but will wait to see what the New Yr brings.
Thank you fur posting. Your information in alternative treatment has been very interesting.

[janebParticipant]

Thanks for the info. I think I’ll try to contact the clinic to see if they have any meds/trials specific to Myeloma assuming what you’ve been prescribed was to target the breast cancer and not the MM specifically.
We were pinning our hopes on the Daratumumab trial For SMM in The hope if delaying progression. There were trials at UCLH and Nottingham but looks like thy are no longer recruiting as the trial doesn’t appear on the gigs clinical trial finder which is really annoying as doesn’t seem to be any dysbdsrd treatment on offer at all like you, we want to be proactive and not just watch and wait!!
I’d love to hear if you find any other treatments for smoulderers.
Thanks again
Jane

[janebParticipant]

Hi Pb42
I’m very interested in the drop in your PP which I assume correlates to the medication you are taking? My husband also has erratic PP levels. They have jumped recently from 31.5 to 40 and yesterday were 37.6…..
Is the Care Oncology Clinic you refer to on Harley St? Can I ask which Consultant you see and the cost for the medication you’re taking?
We’d be very interested in arranging a consult to see if we can bring his PP levels back down and prolong treatment for as long as possible.
He was diagnosed in Dec 2015 by the way aged 44 with a PP of 23 which has gradually been rising.
Any information on the clinic/ meds you use would be greatly appreciated.
Thanks
Jane

[janebParticipant]

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 that those that smoulder do so for as long as possible, you almost wish that if thingcare going to progress then it will do so by the end of the year to benefit from the trial.

The uncertainty at this stage I think is what is so difficult to cope with.

It would be nice to keep in touch with regards to the trial Peter

Thanks again.

Jane

[janebParticipant]

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 30.

My concern is that the drug is only on offer for 3 years which is the length of the trial. Was there any discussion during the  screening about what happens after the 3 years assuming you’ve had and may continue to be having a good response? This is my primary concern, I’m worried that coming off the drug would result in the Myeloma becoming active and then having to start chemo. Would it be realistic to hope that after 3 years on Daratumumab the Myeloma could remain in remission for a period?

Also, was there any indication as to how many people they were accepting onto the trial and the closure date?

Thanks for the update Peter, I hope your pp levels continue to remain stable.

Jane

[janebParticipant]

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 is 47.

Appreciate any info anyone has about the trial.

Thanks

jane

[janebParticipant]

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

[janebParticipant]

<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 bloods and repeat bmb and his para protein levels dropped. He had a FISH but couldn’t do his  cytogenic profile as only 15% cancer in his bone marrow. He was therefore considered low risk and continues on 8 week monitoring.</div>
<div style=”color: #000000; font-family: UICTFontTextStyleBody; font-size: 17px; -webkit-text-size-adjust: auto;”>I would be interested to know if there are clinical trials running in the uk and their criteria ( my understanding is that there are no trials in the uk currently for daratumumab and smm) My understanding was also that you needed to have a pp level of 30+ to be accepted.</div>
<div style=”color: #000000; font-family: UICTFontTextStyleBody; font-size: 17px; -webkit-text-size-adjust: auto;”>Jane</div>

[janebParticipant]

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 using it and not playing your ‘ace ‘ card too early?!!

My other concern is that when the drug stops becoming effective then there appears to be some uncertainty as to whether the Myeloma then becomes more aggressive and therefore more difficult to treat?

There is also no clear evidence in the limited literature to suggest that treating Myeloma at the smouldering stage actually improves survival! Although instinctively if this means avoiding chemo for a bit longer then if feels like the right thing to do.

Iam still very interested in any Smoulderers who are currently on this trial. I now only a few hospitals in the uk are offering this.

If anyone has found any published results from this trial then I would be very interested if you have a link.

Thanks again

jane

[janebParticipant]

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?

[janebParticipant]

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 prior to SCT. We have a 10 yr old son and anxious to protect him against what’s happening to his Dad. At the moment he is well and it is life as normal. (Well sort of! ) I think the thought of chemo worries us both the most at the mo.

Thanks

Jane

[janebParticipant]

<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>

[janebParticipant]

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 to share on renal problems? All advise would be greatfully received. Understandably very anxious about tomorrow’s appointment.

Jane

[janebParticipant]

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

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