Hello to everyone i am new here
My friend has been diagnosed recently , august 2012 with Multiple Myeloma Bence Jones type and LCDD ( light chain deposition disease ) which is affecting the kidneys at the moment
scan showed very small lytic lessions on skull and staging is very difficult because of the leaky kidneys
doctor mentioned plasma cells are sitting at 13,500 currently , an increase.
few months ago plasma cells were 9,500
am i missing something guys ? seems all people talk about plasma cells in percentage (%) and not a figure. is that bad ? what does that mean procentage-wise ?
very difficult to get an ideea
currently on chemo CTD (cyclophosphamide / thalidomide / dexamethasone ) standard procedure in the U.K , starting 4th cycle of chemo
also started on Curcumin 10 g / day
Inositol 2 g / day
and still loooking at others supplements to take
drinking 3 L of water / day which is a massive job to do. renal department reccomended this. has anyone experienced this ?
is anyone taking supplements while on chemo ?
any advice would be apreciated
johanna
Forums
8 posts
• Page 1 of 1
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johanna - Name: Joanna
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: august 2012
- Age at diagnosis: 60
Re: multiple myeloma & complementary therapy
Hi Johanna,
I was told to drink 3 litres a day as well, I can usually manage 2.5. As for supplements check with your friends oncologist first because they may interfere with the chemo.
All the best,
Libby
I was told to drink 3 litres a day as well, I can usually manage 2.5. As for supplements check with your friends oncologist first because they may interfere with the chemo.
All the best,
Libby
-
LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: multiple myeloma & complementary therapy
Hi Johanna,
You asked:
am i missing something guys ? seems all people talk about plasma cells in percentage (%) and not a figure. is that bad ? what does that mean procentage-wise ?
very difficult to get an ideea
In healthy bone marrow, less than 5 percent of the cells are plasma cells. But in people with multiple myeloma, more than 10 percent of the cells may be plasma cells.
http://www.mayoclinic.com/health/multiple-myeloma/DS00415/DSECTION=causes
You asked:
am i missing something guys ? seems all people talk about plasma cells in percentage (%) and not a figure. is that bad ? what does that mean procentage-wise ?
very difficult to get an ideea
In healthy bone marrow, less than 5 percent of the cells are plasma cells. But in people with multiple myeloma, more than 10 percent of the cells may be plasma cells.
http://www.mayoclinic.com/health/multiple-myeloma/DS00415/DSECTION=causes
-
suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: multiple myeloma & complementary therapy
(I just finished writing this, prepare for an essay, haha. Also, I referred to your friend as she for some reason because I thought I read that in your post. Turns out I didn’t, but after writing all of this I might go crazy if I have to go back and correct it. Sorry if it is too long, this is my first post as well – certainly wasn’t trying to scare you off!)
Johanna,
My best advice to you and your friend would be to ensure that you are proactive in her treatment. While the addition of thalidomide and the CTD regimen have certainly improved the outcome for multiple myeloma patients since the days of only alkylating agents (melphalan, cyclophosphamide) and steroids (prednisone and eventually dexamethasone) – I would be hesitant to try anything besides the novel agents once the disease begins to progress. Something that becomes evident after reading study after study is that the prognosis seems to be the best when you attack the disease up front with the most efficacious treatments, rather than wait and those treatments as salvage therapies. Each time a patient’s multiple myeloma relapses there tends to be a trend towards a lower response rate and shorter progression free survival with the subsequent regimen.
That being said, although your friend may have impaired renal function, her age may help offset that prognostic factor to a certain extent (more than two-thirds of multiple myeloma patients are >65). I’m certainly no doctor and really know nothing of your friend’s condition, but I’d be happy to tell you at the very least the questions I would ask the doctor if I were in her shoes. I know this is a pretty long post, I didn’t exactly mean for it to be; I’m just in a similar position to yours and know how much it sucks to feel rather helpless. While this isn’t exactly medical advice to follow to the letter, I hope it can at least give you an idea where to begin and what questions to ask.
Assuming the next tests show that the plasma cell count is increasing and the multiple myeloma is progressing:
1.) Is bortezomib (Velcade) an option as part of a second line therapy in the UK? Velcade is very well tolerated in people with compromised kidney function [1, 2]. In fact bortezomib has been shown in many cases to improve kidney function in people with LCDD, including LCDD associated with multiple myeloma. [1, 2, 3]
2.) Bortezomib and thalidomide are both associated with a high risk of peripheral neuropathy, make sure your friend knows this if the doctor plans to add bortezomib to the CTD regimen. It is efficacious, but CyBorD/VCD (bortezomib, cyclophosphamide, dexamethasone) without thalidomide is also effective even in relapsed patients [4, 5]. This could reduce the risk of developing a higher grade of peripheral neuropathy.
3.) Would a VRD (bortezomib, lenalidomide/Revlimid, dexamethasone) regimen be a better choice for your friend? The toxicity and cost is higher than VCD treatment, but it does show benefit in patients with high-risk cytogenics [6, and a lot more but I’m lazy =) ]. This is something that really can’t even be speculated on without more knowledge of your friend’s condition. Is she a high risk patient? If so, how bad is the cast nephropathy (I’m assuming this is the cause) – will the adjusted (reduced) lenalidomide dose in a VRD regimen yield any benefit over the VCD regimen?
4.) In any treatment containing bortezomib, there is an increased risk of shingles as a side effect, if your friend is placed on a bortezomib regimen, acyclovir will likely be given as prophylaxis to prevent the reawakening of the shingles virus. If she decides on this, make sure she talks to her doctor about taking the lowest acyclovir dose that is effective. That will likely be 200mg three times daily or 400mg once daily as compared to the standard 400mg three times daily [5, 7]. Any lower than this and there is an increased risk of shingles, however sometimes it must be reduced in cases of decreased kidney function. Long term acyclovir treatment can have side effects, so the lower the dose that is effective the better. The side effects of low dose acyclovir treatment present much less often than in a standard dose.
5.) Is your friend eligible for an autologous stem cell transplant? Renal insufficiency (I guess that term is outdated) by itself does not necessarily exclude one from an autologous stem cell transplant. An auto-SCT can still potentially provide the best outcomes in qualifying patients even with renal failure [8, 9]. This is *especially* true if her kidney function can return to within a normal range after her next treatment [8]. If that ends up being the case and she is eligible and understands that it is a tough process, but potentially very beneficial, I would highly recommend it.
6.) Alright, this one isn’t exactly a question but I wouldn’t be too worried about your friend just yet. She hasn’t even touched some of the most promising drugs, which is a good thing. She still has bendamustine, carfilzomib, lenalidomide, bortezomib, potentially pomalidomide, vorinostat as a last resort, etcetera. I really think your friend is in a good position at the moment and I wish them the best.
One thing I wanted to add is that if your friend does take a bortezomib containing regimen, AVOID high doses of antioxidants. Avoid green tea (EGCG reacts with bortezomib), high doses of vitamin C (also reacts with bortezomib), and large amounts of cruciferous vegetables (cabbages, radishes, broccoli, cauliflower) before the day of the bortezomib dose, the day of and the day after the dose [9, 10, 11]. The reason for this is that flavonoids with adjacent hydroxyl groups (quercetin, luteolin, EGCG) appear to react with the boronate group on bortezomib. If you click the link to the 11th citation, click view full PDF on the right and scroll down to the table you’ll see many of the foods that are high in these flavonoids. Basically if possible avoid green tea at all costs, I have a feeling the doses of flavonoids in cruciferous vegetables and fruits aren’t enough to have a huge adverse effect on bortezomib effectiveness, but I guess I see it as one of those “better safe than sorry” things.
Supplements:
If you’re looking for a supplement that looks promising in the case of multiple myeloma I would suggest cepharanthine (or maybe berbamine). These are biscoclaurine alkaloids that have been used as supplementary cancer treatments for decades (maybe more) in traditional Chinese medicine. Cepharanthine is actually approved in Japan as a treatment for radiation induced leukopenia [13] and there is even a case study of it having an anti-myeloma effect in a patient by itself and in addition to dexamethasone [12] (full case study available in link) as well as another case study showing it alleviates immune thrombocytopenic purpura (quite rare) in multiple myeloma [18]. It is extremely toxic to multiple-myeloma cells in vitro (aka in a petri dish) with half-maximal inhibitory concentrations as low as 2uM in multiple myeloma cell lines [12].
There really isn’t all that much out there on it outside of studies done in Japan, however it appears to be extremely well tolerated [12, 14] and even if it doesn’t reach cytotoxic concentrations in and of itself, I doubt many patients would mind a potential attenuation of leukopenia. Cepharanthine is also a potent reverser of multidrug resistance mediated by regulation of MDR1, MRP7 as well as binding to phosphatidylserine in the cell membrane and altering membrane function [15, 16, 17, 20]. The real questions that have to be asked are whether or not this drug is another resveratrol. That is, is the compound bioavailable enough to be therapeutically effective at the oral doses given? The fact that it is approved in Japan certainly gives me more hope compared to the majority of supplements, but my research into the pharmacokinetics of cepharanthine leave me skeptical. It certainly can reach clinically significant levels in intravenous doses (judging from the Cmax/AUC and elimination in studies on Chinese volunteers), but that isn’t exactly an option in the US. The oral bioavailability is not 100%, but at the same time it is nearly impossible to extrapolate the effective dose needed from an in vitro study.
Anyway, I just thought I would point it out since it seemed promising and is probably something most people have never heard of before. My guess would be that like its fellow biscoclaurine compound, berbamine, it acts by inhibiting CaMKII-gamma, which in turn downregulates beta-catenin, STAT3, and NF-kB [19]. Berbamine was the first agent discovered to be a potential ATP-competitive inhibitor of this kinase and (I strongly believe, or at least believe that cepharanthine) could be potentially beneficial with lenalidomide due to lenalidomide activating the AKT pathway. STAT3 [22, 23] and AKT/beta-catenin inhibitors [24, 25] have been found to be synergistic with lenalidomide, additionally beta-catenin upregulation has been found to contribute to lenalidomide resistance [24]. Berbamine is also used in Chinese medicine and demonstrates potent cytotoxicity against multiple myeloma cell lines [20, 21]. Of its safety I have no clue; I know that it comes from a plant known as the “jaundice berry,” which certainly doesn’t sound very appealing. However there are multiple compounds in that plant, one of which is known to be hepatotoxic, and there is a study of berbamine at doses of over 300mg/day in Chinese patients with neutropenia that revealed no ill effects at that dose and in fact a benefit in patients recovering from neutropenia [26].
Unfortunately, there are a lot of unknowns about this drug/supplement/natural product, whatever you wish to call it. The bioavailability is uncertain, there is no concrete proof of its efficacy in multiple myeloma (like most supplements), and potentially most importantly the effect cepharanthine has on p-Gp could potentially alter the availability of other chemotherapeutic agents. In the same sense that a supplement leading to a decrease in the amount of a drug in your system can be a bad thing, the same can be said for a supplement that leads to increased levels of a drug. One more thing - isn’t readily available in the US and has to be ordered from overseas or purchased and sent to a compounding pharmacy, so that creates another barrier.
REGARDLESS, if one were to take any natural product, especially one that little is known about in the west like cepharanthine, both the oncologist and (in my opinion) a pharmacist should be consulted beforehand. Complementary therapy is supposed to be exactly that, complementary. If the oncologist or pharmacist is concerned it may interfere with your therapy, it is NOT a supplement that is worth taking.
Anyway, I this ended up being a lot longer than I expected it to be. I was too lazy to include true citations so I just tossed in the links. I wish your friend the best of luck Johanna – my father has cepharanthine on the way so I’ll give everyone an update on it when I can.
(1) http://www.ncbi.nlm.nih.gov/pubmed/18464107
(2) http://bloodjournal.hematologylibrary.org/content/109/6/2604.full.pdf
(3) http://www.ncbi.nlm.nih.gov/pubmed/21479696
(4) http://www.haematologica.org/content/92/8/1149.full
(5) http://clsmac70.ndcls.ox.ac.uk/tssg-haematology/myeloma/pdf-protocols/bortezomib-cyclo-dex.pdf
(6) http://www.asco.org/ASCOv2/Home/Education%20%26%20Training/Educational%20Book/PDF%20Files/2012/zds00112000508.PDF
(7) http://jjco.oxfordjournals.org/content/early/2010/10/14/jjco.hyq194.full
(8) http://www.ncbi.nlm.nih.gov/pubmed/15946307
(9) http://www.ncbi.nlm.nih.gov/pubmed/19369963
(10) http://bloodjournal.hematologylibrary.org/content/113/23/5695.full
(11) http://bloodjournal.hematologylibrary.org.ezproxy.uvm.edu/content/112/9/3835
(12) http://www.spandidos-publications.com/serveFile/ijo_33_4_807_PDF.pdf?type=article&article_id=ijo_33_4_807&item=PDF
(13) http://www.kakenshoyaku.com/03/product/cep/cepharanthinpks-e.pdf
(14) http://www.ncbi.nlm.nih.gov/pubmed/21602589
(15) http://www.ncbi.nlm.nih.gov/pubmed/3567927
(16) http://molpharm.aspetjournals.org/content/51/3/399.full.pdf
(17) http://www.ncbi.nlm.nih.gov/pubmed/19150344
(18) http://www.ncbi.nlm.nih.gov/pubmed/22561120
(19) http://bloodjournal.hematologylibrary.org/content/early/2012/10/16/blood-2012-06-434894.abstract
(20) http://www.ncbi.nlm.nih.gov/pubmed/8052486
(21) http://www.ncbi.nlm.nih.gov/pubmed/19960011
(22) http://clincancerres.aacrjournals.org/content/early/2011/03/23/1078-0432.CCR-10-3012
(23) http://www.ncbi.nlm.nih.gov/pubmed/21520044
(24) http://www.ncbi.nlm.nih.gov/pubmed/21189262
(25) http://iv.iiarjournals.org/content/25/6/887.short
(26) http://link.springer.com/content/pdf/10.1007%2Fs12185-011-0887-7
Johanna,
My best advice to you and your friend would be to ensure that you are proactive in her treatment. While the addition of thalidomide and the CTD regimen have certainly improved the outcome for multiple myeloma patients since the days of only alkylating agents (melphalan, cyclophosphamide) and steroids (prednisone and eventually dexamethasone) – I would be hesitant to try anything besides the novel agents once the disease begins to progress. Something that becomes evident after reading study after study is that the prognosis seems to be the best when you attack the disease up front with the most efficacious treatments, rather than wait and those treatments as salvage therapies. Each time a patient’s multiple myeloma relapses there tends to be a trend towards a lower response rate and shorter progression free survival with the subsequent regimen.
That being said, although your friend may have impaired renal function, her age may help offset that prognostic factor to a certain extent (more than two-thirds of multiple myeloma patients are >65). I’m certainly no doctor and really know nothing of your friend’s condition, but I’d be happy to tell you at the very least the questions I would ask the doctor if I were in her shoes. I know this is a pretty long post, I didn’t exactly mean for it to be; I’m just in a similar position to yours and know how much it sucks to feel rather helpless. While this isn’t exactly medical advice to follow to the letter, I hope it can at least give you an idea where to begin and what questions to ask.
Assuming the next tests show that the plasma cell count is increasing and the multiple myeloma is progressing:
1.) Is bortezomib (Velcade) an option as part of a second line therapy in the UK? Velcade is very well tolerated in people with compromised kidney function [1, 2]. In fact bortezomib has been shown in many cases to improve kidney function in people with LCDD, including LCDD associated with multiple myeloma. [1, 2, 3]
2.) Bortezomib and thalidomide are both associated with a high risk of peripheral neuropathy, make sure your friend knows this if the doctor plans to add bortezomib to the CTD regimen. It is efficacious, but CyBorD/VCD (bortezomib, cyclophosphamide, dexamethasone) without thalidomide is also effective even in relapsed patients [4, 5]. This could reduce the risk of developing a higher grade of peripheral neuropathy.
3.) Would a VRD (bortezomib, lenalidomide/Revlimid, dexamethasone) regimen be a better choice for your friend? The toxicity and cost is higher than VCD treatment, but it does show benefit in patients with high-risk cytogenics [6, and a lot more but I’m lazy =) ]. This is something that really can’t even be speculated on without more knowledge of your friend’s condition. Is she a high risk patient? If so, how bad is the cast nephropathy (I’m assuming this is the cause) – will the adjusted (reduced) lenalidomide dose in a VRD regimen yield any benefit over the VCD regimen?
4.) In any treatment containing bortezomib, there is an increased risk of shingles as a side effect, if your friend is placed on a bortezomib regimen, acyclovir will likely be given as prophylaxis to prevent the reawakening of the shingles virus. If she decides on this, make sure she talks to her doctor about taking the lowest acyclovir dose that is effective. That will likely be 200mg three times daily or 400mg once daily as compared to the standard 400mg three times daily [5, 7]. Any lower than this and there is an increased risk of shingles, however sometimes it must be reduced in cases of decreased kidney function. Long term acyclovir treatment can have side effects, so the lower the dose that is effective the better. The side effects of low dose acyclovir treatment present much less often than in a standard dose.
5.) Is your friend eligible for an autologous stem cell transplant? Renal insufficiency (I guess that term is outdated) by itself does not necessarily exclude one from an autologous stem cell transplant. An auto-SCT can still potentially provide the best outcomes in qualifying patients even with renal failure [8, 9]. This is *especially* true if her kidney function can return to within a normal range after her next treatment [8]. If that ends up being the case and she is eligible and understands that it is a tough process, but potentially very beneficial, I would highly recommend it.
6.) Alright, this one isn’t exactly a question but I wouldn’t be too worried about your friend just yet. She hasn’t even touched some of the most promising drugs, which is a good thing. She still has bendamustine, carfilzomib, lenalidomide, bortezomib, potentially pomalidomide, vorinostat as a last resort, etcetera. I really think your friend is in a good position at the moment and I wish them the best.
One thing I wanted to add is that if your friend does take a bortezomib containing regimen, AVOID high doses of antioxidants. Avoid green tea (EGCG reacts with bortezomib), high doses of vitamin C (also reacts with bortezomib), and large amounts of cruciferous vegetables (cabbages, radishes, broccoli, cauliflower) before the day of the bortezomib dose, the day of and the day after the dose [9, 10, 11]. The reason for this is that flavonoids with adjacent hydroxyl groups (quercetin, luteolin, EGCG) appear to react with the boronate group on bortezomib. If you click the link to the 11th citation, click view full PDF on the right and scroll down to the table you’ll see many of the foods that are high in these flavonoids. Basically if possible avoid green tea at all costs, I have a feeling the doses of flavonoids in cruciferous vegetables and fruits aren’t enough to have a huge adverse effect on bortezomib effectiveness, but I guess I see it as one of those “better safe than sorry” things.
Supplements:
If you’re looking for a supplement that looks promising in the case of multiple myeloma I would suggest cepharanthine (or maybe berbamine). These are biscoclaurine alkaloids that have been used as supplementary cancer treatments for decades (maybe more) in traditional Chinese medicine. Cepharanthine is actually approved in Japan as a treatment for radiation induced leukopenia [13] and there is even a case study of it having an anti-myeloma effect in a patient by itself and in addition to dexamethasone [12] (full case study available in link) as well as another case study showing it alleviates immune thrombocytopenic purpura (quite rare) in multiple myeloma [18]. It is extremely toxic to multiple-myeloma cells in vitro (aka in a petri dish) with half-maximal inhibitory concentrations as low as 2uM in multiple myeloma cell lines [12].
There really isn’t all that much out there on it outside of studies done in Japan, however it appears to be extremely well tolerated [12, 14] and even if it doesn’t reach cytotoxic concentrations in and of itself, I doubt many patients would mind a potential attenuation of leukopenia. Cepharanthine is also a potent reverser of multidrug resistance mediated by regulation of MDR1, MRP7 as well as binding to phosphatidylserine in the cell membrane and altering membrane function [15, 16, 17, 20]. The real questions that have to be asked are whether or not this drug is another resveratrol. That is, is the compound bioavailable enough to be therapeutically effective at the oral doses given? The fact that it is approved in Japan certainly gives me more hope compared to the majority of supplements, but my research into the pharmacokinetics of cepharanthine leave me skeptical. It certainly can reach clinically significant levels in intravenous doses (judging from the Cmax/AUC and elimination in studies on Chinese volunteers), but that isn’t exactly an option in the US. The oral bioavailability is not 100%, but at the same time it is nearly impossible to extrapolate the effective dose needed from an in vitro study.
Anyway, I just thought I would point it out since it seemed promising and is probably something most people have never heard of before. My guess would be that like its fellow biscoclaurine compound, berbamine, it acts by inhibiting CaMKII-gamma, which in turn downregulates beta-catenin, STAT3, and NF-kB [19]. Berbamine was the first agent discovered to be a potential ATP-competitive inhibitor of this kinase and (I strongly believe, or at least believe that cepharanthine) could be potentially beneficial with lenalidomide due to lenalidomide activating the AKT pathway. STAT3 [22, 23] and AKT/beta-catenin inhibitors [24, 25] have been found to be synergistic with lenalidomide, additionally beta-catenin upregulation has been found to contribute to lenalidomide resistance [24]. Berbamine is also used in Chinese medicine and demonstrates potent cytotoxicity against multiple myeloma cell lines [20, 21]. Of its safety I have no clue; I know that it comes from a plant known as the “jaundice berry,” which certainly doesn’t sound very appealing. However there are multiple compounds in that plant, one of which is known to be hepatotoxic, and there is a study of berbamine at doses of over 300mg/day in Chinese patients with neutropenia that revealed no ill effects at that dose and in fact a benefit in patients recovering from neutropenia [26].
Unfortunately, there are a lot of unknowns about this drug/supplement/natural product, whatever you wish to call it. The bioavailability is uncertain, there is no concrete proof of its efficacy in multiple myeloma (like most supplements), and potentially most importantly the effect cepharanthine has on p-Gp could potentially alter the availability of other chemotherapeutic agents. In the same sense that a supplement leading to a decrease in the amount of a drug in your system can be a bad thing, the same can be said for a supplement that leads to increased levels of a drug. One more thing - isn’t readily available in the US and has to be ordered from overseas or purchased and sent to a compounding pharmacy, so that creates another barrier.
REGARDLESS, if one were to take any natural product, especially one that little is known about in the west like cepharanthine, both the oncologist and (in my opinion) a pharmacist should be consulted beforehand. Complementary therapy is supposed to be exactly that, complementary. If the oncologist or pharmacist is concerned it may interfere with your therapy, it is NOT a supplement that is worth taking.
Anyway, I this ended up being a lot longer than I expected it to be. I was too lazy to include true citations so I just tossed in the links. I wish your friend the best of luck Johanna – my father has cepharanthine on the way so I’ll give everyone an update on it when I can.
(1) http://www.ncbi.nlm.nih.gov/pubmed/18464107
(2) http://bloodjournal.hematologylibrary.org/content/109/6/2604.full.pdf
(3) http://www.ncbi.nlm.nih.gov/pubmed/21479696
(4) http://www.haematologica.org/content/92/8/1149.full
(5) http://clsmac70.ndcls.ox.ac.uk/tssg-haematology/myeloma/pdf-protocols/bortezomib-cyclo-dex.pdf
(6) http://www.asco.org/ASCOv2/Home/Education%20%26%20Training/Educational%20Book/PDF%20Files/2012/zds00112000508.PDF
(7) http://jjco.oxfordjournals.org/content/early/2010/10/14/jjco.hyq194.full
(8) http://www.ncbi.nlm.nih.gov/pubmed/15946307
(9) http://www.ncbi.nlm.nih.gov/pubmed/19369963
(10) http://bloodjournal.hematologylibrary.org/content/113/23/5695.full
(11) http://bloodjournal.hematologylibrary.org.ezproxy.uvm.edu/content/112/9/3835
(12) http://www.spandidos-publications.com/serveFile/ijo_33_4_807_PDF.pdf?type=article&article_id=ijo_33_4_807&item=PDF
(13) http://www.kakenshoyaku.com/03/product/cep/cepharanthinpks-e.pdf
(14) http://www.ncbi.nlm.nih.gov/pubmed/21602589
(15) http://www.ncbi.nlm.nih.gov/pubmed/3567927
(16) http://molpharm.aspetjournals.org/content/51/3/399.full.pdf
(17) http://www.ncbi.nlm.nih.gov/pubmed/19150344
(18) http://www.ncbi.nlm.nih.gov/pubmed/22561120
(19) http://bloodjournal.hematologylibrary.org/content/early/2012/10/16/blood-2012-06-434894.abstract
(20) http://www.ncbi.nlm.nih.gov/pubmed/8052486
(21) http://www.ncbi.nlm.nih.gov/pubmed/19960011
(22) http://clincancerres.aacrjournals.org/content/early/2011/03/23/1078-0432.CCR-10-3012
(23) http://www.ncbi.nlm.nih.gov/pubmed/21520044
(24) http://www.ncbi.nlm.nih.gov/pubmed/21189262
(25) http://iv.iiarjournals.org/content/25/6/887.short
(26) http://link.springer.com/content/pdf/10.1007%2Fs12185-011-0887-7
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Nianni
Re: multiple myeloma & complementary therapy
Just stumbled across a more complete summary of the uses of cepharanthine in a much more readable format than my wall of text post above. It's certainly an interesting compound.
http://www.if-pan.krakow.pl/pjp/pdf/2011/2_337.pdf
http://www.if-pan.krakow.pl/pjp/pdf/2011/2_337.pdf
-
Nianni
Re: multiple myeloma & complementary therapy
Ugh sorry to post for the third time in a row in this thread. I was looking through that review in my previous post and while the summaries for each indication accurately reflect the conclusions drawn in the studies, the doses are INCORRECT in the review. Many of these dosages in the chart say "po" which is oral administration, but upon checking the source material the dose was actually IV. Additionally, the review claims 50mg/kg IV was administered in the ovarian cancer study, then shows 50mg/day oral in the table summarizing the trials. Neither of these are correct, it was 50mg/day intravenously for that study.
There are numerous dosage errors in here, which is certainly depressing considering that after consulting the studies the summaries in the review (minus the dose and route of administration) seem to be correct, however these errors certainly lend no credibility to that article. I wish I had noticed this before I posted it, but it just looked like a complete summary and I posted it without reading. I'd recommend using the review as more of a source to locate the original studies rather than as an actual comprehensive analysis of cepharanthine. A lot of the studies are available online, but there are also some that are older and not available or in Japanese.
If anyone would like access to a particular reference please post a request and I will do my best to locate it and provide the material. Some of these haven't been translated out of Japanese so there is no way for me to review the accuracy of the claims, however as I've said the ones that I have seen so far in English do reflect what is written in the review, albeit with dosing errors.
Anyway, I implore you to read the reference material yourself if you are interested. It certainly seems like a safe supplement from the studies I've reviewed, and although the study populations are small and often times not blinded or even randomized, I certainly feel more confident in these studies than the in vitro resveratrol experiments utilizing concentrations thousands of times higher than what are clinically obtainable.
Is this a silver bullet or a cure of any sort? No, certainly not, but I think any drug that has a great safety profile with a demonstrated potential benefit in patients with leukopenia as well as a possible anti-myeloma and MDR mitigating effect is worth, at the bare minimum, a look.
Now that I feel like I've made quite the idiot out of myself I'm going to take a break from spam posting the forums for now heh. And I just want to repeat that anyone wanting to take complementary therapy of any sort should ALWAYS consult their oncologist and preferably pharmacist as well. They know what is best for you specifically and will ensure that there aren't any potential interactions or dangers to any complementary therapy. Plus they protect you from the triple posting loons like myself =)
There are numerous dosage errors in here, which is certainly depressing considering that after consulting the studies the summaries in the review (minus the dose and route of administration) seem to be correct, however these errors certainly lend no credibility to that article. I wish I had noticed this before I posted it, but it just looked like a complete summary and I posted it without reading. I'd recommend using the review as more of a source to locate the original studies rather than as an actual comprehensive analysis of cepharanthine. A lot of the studies are available online, but there are also some that are older and not available or in Japanese.
If anyone would like access to a particular reference please post a request and I will do my best to locate it and provide the material. Some of these haven't been translated out of Japanese so there is no way for me to review the accuracy of the claims, however as I've said the ones that I have seen so far in English do reflect what is written in the review, albeit with dosing errors.
Anyway, I implore you to read the reference material yourself if you are interested. It certainly seems like a safe supplement from the studies I've reviewed, and although the study populations are small and often times not blinded or even randomized, I certainly feel more confident in these studies than the in vitro resveratrol experiments utilizing concentrations thousands of times higher than what are clinically obtainable.
Is this a silver bullet or a cure of any sort? No, certainly not, but I think any drug that has a great safety profile with a demonstrated potential benefit in patients with leukopenia as well as a possible anti-myeloma and MDR mitigating effect is worth, at the bare minimum, a look.
Now that I feel like I've made quite the idiot out of myself I'm going to take a break from spam posting the forums for now heh. And I just want to repeat that anyone wanting to take complementary therapy of any sort should ALWAYS consult their oncologist and preferably pharmacist as well. They know what is best for you specifically and will ensure that there aren't any potential interactions or dangers to any complementary therapy. Plus they protect you from the triple posting loons like myself =)
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Nianni
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johanna - Name: Joanna
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: august 2012
- Age at diagnosis: 60
Re: multiple myeloma & complementary therapy
thank you for all the feedback....
wow...looks like a long day of study .tomorrow..
tried to send you PM , can`t do it for some reason...
i appreciate it very much
i will do my best , and give a more detailed reply tomorrow
to all that you have written
take care
wow...looks like a long day of study .tomorrow..
tried to send you PM , can`t do it for some reason...
i appreciate it very much
i will do my best , and give a more detailed reply tomorrow
to all that you have written
take care
-
johanna - Name: Joanna
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: august 2012
- Age at diagnosis: 60
8 posts
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