Hi Stan and Art,
Thanks for the feedback. I hope you both can hold off chemotherapy and possibly not ever progress.
I just ran across this article, don't know if you have seen it.
"Smoldering multiple myeloma (SMM) patients with bone marrow plasma cell (BMPC) involvement should be treated immediately, say Italian researchers who found these patients are at greatest risk for symptomatic disease.
BMPC of 60% or greater determined using bone marrow aspiration (BMA) was associated with a significant 5.6-fold increased risk for progression to symptomatic multiple myeloma (sy-MM) within 2 years compared with a lower BMPC proportion, report Giuseppe Cimino ("Sapienza" University Polo Pontino, Rome) and co-workers in Cancer.
The team followed up 397 patients with SMM attending 12 specialist centers for a median of 54 months, during which time 37.5% of patients progressed to sy-MM. Overall, 43% of patients survived 10 years, 38% 15 years, and 24% survived 20 years; the cumulative incidence of progression at these time points was 45%, 55%, and 75%, respectively."
http://www.news-medical.net/news/20120718/Marrow-aspiration-predicts-smoldering-multiple-myeloma-progression.aspx
Forums
Re: My visit to NIH
Dear all,
A couple of comments:
1) The Italian investigators suggested immediate treatment for those with smoldering myeloma who have >60% involvement of their marrow space with myeloma -- not those with lower disease burdens. The Mayo group has reported similar findings.
2) The BHQ drug is a very exciting therapeutic. It is a monoclonal antibody that binds and inhibits DKK-1, a protein that has been shown to play a critical role in bone disease in myeloma. This is why Ben S asked if you had your DKK-1 levels checked. I would suspect that many patients with smoldering disease would not have elevated blood levels of DKK-1 at this stage of disease, but that does not mean that targeting DKK-1 at the sites of smoldering disease won't be effective. Stan, I would be highly supportive of this approach to your disease.
Take care!
Pete V.
A couple of comments:
1) The Italian investigators suggested immediate treatment for those with smoldering myeloma who have >60% involvement of their marrow space with myeloma -- not those with lower disease burdens. The Mayo group has reported similar findings.
2) The BHQ drug is a very exciting therapeutic. It is a monoclonal antibody that binds and inhibits DKK-1, a protein that has been shown to play a critical role in bone disease in myeloma. This is why Ben S asked if you had your DKK-1 levels checked. I would suspect that many patients with smoldering disease would not have elevated blood levels of DKK-1 at this stage of disease, but that does not mean that targeting DKK-1 at the sites of smoldering disease won't be effective. Stan, I would be highly supportive of this approach to your disease.
Take care!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: My visit to NIH
Dr. Pete,
Have you heard of any positive results regarding BHQ880?
Also, I'll have the opportunity to participate in the MLN9708 (oral Velcade) trial for SMM at NIH when it's available. I'd have to stop participation in the BHQ880 trial, though. Everything has happened very quickly and I'm still not sure what the best approach for me would be. I guess I'll have to ask my oncologist and Dr. Jagannath, my Myeloma specialist.
Thanks
Have you heard of any positive results regarding BHQ880?
Also, I'll have the opportunity to participate in the MLN9708 (oral Velcade) trial for SMM at NIH when it's available. I'd have to stop participation in the BHQ880 trial, though. Everything has happened very quickly and I'm still not sure what the best approach for me would be. I guess I'll have to ask my oncologist and Dr. Jagannath, my Myeloma specialist.
Thanks
-
Stan W. - Name: Stan
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: SMM-April 2012
- Age at diagnosis: 58
Re: My visit to NIH
Hi Stan,
Just in case it's of any help ... The Beacon has published a few articles that mention BHQ880. Here is one list of those articles,
https://myelomabeacon.org/tag/bhq880/
and here is a more extensive list of any article that mentions bhq880 at all.
https://myelomabeacon.org/search/bhq880/
The most extensive published article to date about BHQ880 is this one,
http://bloodjournal.hematologylibrary.org/content/114/2/371.long
which only covers data from pre-clinical studies of the drug. This article was also reviewed in a Beacon article that you'll see in the lists above.
Here is the list of the three trials involving BHQ880 currently listed at clinicaltrials.gov: http://1.usa.gov/Mi0TvB . As you'll see, the only two trials that are currently recruiting are one for high-risk smoldering myeloma patients,
http://clinicaltrials.gov/ct2/show/NCT01302886
which has two locations in the New York City area, including one that's already recruiting patients, and a second trial,
http://clinicaltrials.gov/ct2/show/NCT01337752
which is for newly diagnosed multiple myeloma patients with renal insufficiency (kidney issues). That trial also has two locations in the New York City area, but they are not yet recruiting patients.
Good luck!
Just in case it's of any help ... The Beacon has published a few articles that mention BHQ880. Here is one list of those articles,
https://myelomabeacon.org/tag/bhq880/
and here is a more extensive list of any article that mentions bhq880 at all.
https://myelomabeacon.org/search/bhq880/
The most extensive published article to date about BHQ880 is this one,
http://bloodjournal.hematologylibrary.org/content/114/2/371.long
which only covers data from pre-clinical studies of the drug. This article was also reviewed in a Beacon article that you'll see in the lists above.
Here is the list of the three trials involving BHQ880 currently listed at clinicaltrials.gov: http://1.usa.gov/Mi0TvB . As you'll see, the only two trials that are currently recruiting are one for high-risk smoldering myeloma patients,
http://clinicaltrials.gov/ct2/show/NCT01302886
which has two locations in the New York City area, including one that's already recruiting patients, and a second trial,
http://clinicaltrials.gov/ct2/show/NCT01337752
which is for newly diagnosed multiple myeloma patients with renal insufficiency (kidney issues). That trial also has two locations in the New York City area, but they are not yet recruiting patients.
Good luck!
Re: My visit to NIH
I have been participating in the Phase 2 trial of BHQ880 at Moffitt Cancer Center I go this week for my sixth of the twelve treatments. So far very little if any side effects. We will be able to tell next month how the drug is working since I will go through the same series of test I did just prior to stating the treatments. Those test include CT scans MRI of the spine bone density and a bone marrow asp/biopsy. It will be interesting to see if my BMPC declines since it was up to 70% in January just prior to the study.
Richard
Richard
-
Richard_L
Re: My visit to NIH
Hi Art --
I was interested in what dosing you are using for the " Thorne brand Meriva Curcumin" and which Meriva you are using -- the Meriva - SR or the Meriva - 500. I have been trying to get my health care providers to buy into using Curcumin for my Multiple Myleoma, but aren't getting very much feed back. I have purchased other Thorne products before so your post caught my eye. Now that I have pinpointed a viable product, I will broach this subject again next month when I have a appointment. Thank you for the information.
Lisa
Art wrote:
> Stan
> They are great at the NIH. George is awesome. If you have not had a BMbx
> elsewhere you cant truly appreciate him.
he is a PA. ( physicians
> assistant) I too am in the natural progression study there and am going in
> on Aug. 2 for my 6 month Follow up. they offered me the carfilzomib trial
> for my SMM but I can't logistically do that as I live in the Midwest. I
> have to work full time and am in the Trades and don't get much paid time
> off. I am 41 with three kids (15,13,11) I too have been taking Curcumin (
> Thorne brand Meriva Curcumin) which is supposed to be much more bio
> available. I have a good feeling that I will Smolder for quite some time so
> I'm just keeping an eye on things and trying to stay away from treatment
> until absolutely necessary.
> Best Wishes
> Art
I was interested in what dosing you are using for the " Thorne brand Meriva Curcumin" and which Meriva you are using -- the Meriva - SR or the Meriva - 500. I have been trying to get my health care providers to buy into using Curcumin for my Multiple Myleoma, but aren't getting very much feed back. I have purchased other Thorne products before so your post caught my eye. Now that I have pinpointed a viable product, I will broach this subject again next month when I have a appointment. Thank you for the information.
Lisa
Art wrote:
> Stan
> They are great at the NIH. George is awesome. If you have not had a BMbx
> elsewhere you cant truly appreciate him.
he is a PA. ( physicians> assistant) I too am in the natural progression study there and am going in
> on Aug. 2 for my 6 month Follow up. they offered me the carfilzomib trial
> for my SMM but I can't logistically do that as I live in the Midwest. I
> have to work full time and am in the Trades and don't get much paid time
> off. I am 41 with three kids (15,13,11) I too have been taking Curcumin (
> Thorne brand Meriva Curcumin) which is supposed to be much more bio
> available. I have a good feeling that I will Smolder for quite some time so
> I'm just keeping an eye on things and trying to stay away from treatment
> until absolutely necessary.
> Best Wishes
> Art
-
Lisa_G
Re: My visit to NIH
Richard_L wrote:
> I have been participating in the Phase 2 trial of BHQ880 at Moffitt Cancer
> Center I go this week for my sixth of the twelve treatments. So far very
> little if any side effects. We will be able to tell next month how the
> drug is working since I will go through the same series of test I did just
> prior to stating the treatments. Those test include CT scans MRI of the
> spine bone density and a bone marrow asp/biopsy. It will be interesting to
> see if my BMPC declines since it was up to 70% in January just prior to the
> study.
>
> Richard
Richard,
I'm anxious to hear the results after being on this trial for 6 months. I'm going for the last test (MRI) before starting the trial.
As far as side effects, can you elaborate?
Thanks,
Stan
> I have been participating in the Phase 2 trial of BHQ880 at Moffitt Cancer
> Center I go this week for my sixth of the twelve treatments. So far very
> little if any side effects. We will be able to tell next month how the
> drug is working since I will go through the same series of test I did just
> prior to stating the treatments. Those test include CT scans MRI of the
> spine bone density and a bone marrow asp/biopsy. It will be interesting to
> see if my BMPC declines since it was up to 70% in January just prior to the
> study.
>
> Richard
Richard,
I'm anxious to hear the results after being on this trial for 6 months. I'm going for the last test (MRI) before starting the trial.
As far as side effects, can you elaborate?
Thanks,
Stan
-
Stan W. - Name: Stan
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: SMM-April 2012
- Age at diagnosis: 58
Re: My visit to NIH
Stan W. wrote:
> Richard_L wrote:
> > I have been participating in the Phase 2 trial of BHQ880 at Moffitt Cancer
> > Center I go this week for my sixth of the twelve treatments. So far very
> > little if any side effects. We will be able to tell next month how the
> > drug is working since I will go through the same series of test I did just
> > prior to stating the treatments. Those test include CT scans MRI of the
> > spine bone density and a bone marrow asp/biopsy. It will be interesting to
> > see if my BMPC declines since it was up to 70% in January just prior to the
> > study.
> >
> > Richard
>
> Richard,
> I'm anxious to hear the results after being on this trial for 6 months. I'm going for
> the last test (MRI) before starting the trial.
> As far as side effects, can you elaborate?
> Thanks,
> Stan
Stan-- Side effects as stated above very few if any. For me the first couple of infusion that night I ran a slight fever but nothing to worry about. I get a little more fatigue then usual the following day but nothing that would keep you from your normal activates. Took me 3 to 4 weeks to get over bronchitis around the third month but I can not attribute that to the BHQ880. My hemogram has runs low from the beginning and I almost did not qualify for the study due to my platelet count being slightly below 100. Good luck and I hope you qualify for this study. Any other question please feel free to email me.
> Richard_L wrote:
> > I have been participating in the Phase 2 trial of BHQ880 at Moffitt Cancer
> > Center I go this week for my sixth of the twelve treatments. So far very
> > little if any side effects. We will be able to tell next month how the
> > drug is working since I will go through the same series of test I did just
> > prior to stating the treatments. Those test include CT scans MRI of the
> > spine bone density and a bone marrow asp/biopsy. It will be interesting to
> > see if my BMPC declines since it was up to 70% in January just prior to the
> > study.
> >
> > Richard
>
> Richard,
> I'm anxious to hear the results after being on this trial for 6 months. I'm going for
> the last test (MRI) before starting the trial.
> As far as side effects, can you elaborate?
> Thanks,
> Stan
Stan-- Side effects as stated above very few if any. For me the first couple of infusion that night I ran a slight fever but nothing to worry about. I get a little more fatigue then usual the following day but nothing that would keep you from your normal activates. Took me 3 to 4 weeks to get over bronchitis around the third month but I can not attribute that to the BHQ880. My hemogram has runs low from the beginning and I almost did not qualify for the study due to my platelet count being slightly below 100. Good luck and I hope you qualify for this study. Any other question please feel free to email me.
-
Richard L - Name: Richard
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 03/02/2011
- Age at diagnosis: 60
Re: My visit to NIH
Well, I've had two infusions of BHQ880. No side effects at all. And, from what the doctor told me, I wasn't expecting any. I'd ride my Vespa to the hospital in the morning and back home in the afternoon. Hardest thing is trying to stay awake. With the blood tests before, waiting to get the drug and finally getting the infusion (2+ hours) makes a long day.
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Stan W. - Name: Stan
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: SMM-April 2012
- Age at diagnosis: 58
Re: My visit to NIH
I'm going to NIH in October for my first visit. So nice to hear everyone seems to have a good experience. I'm hoping to go into the natural history study and learning more about my options.
-
mrsv118 - Name: Kate
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 7/19/12
- Age at diagnosis: 48
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