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Medical Forum / Diseases and Disorders / Diabetes / January 2008A New Year personal challenge
G'day G'day Folks, It is with some trepidation that I make this post. One option is to carry on as though nothing untoward is happening for me. People out there need support which I'm capable of giving. Having a meaningful existence is important to personal survival. Many people with worse situations than my own manage to carry on supporting others here. I'd like to do the same without invoking a stressful situation. However at this moment in time I need the help of other people, people who are willing to devote some time to finding solutions where solutions are unlikely to have been found before. You see things are not going well for me at the moment. Most regular posters will know I have multiple myeloma, MM, the bone marrow cancer that produces excess immunoglobulin G crowding out other healthy forms of immunoglobulin. A stem cell transplant failed completely. The drug that has produced success is the sleeping tablet thalidomide. Thalidomide is the drug that produced all the fetal abnormalities. Thalidomide is thought to have a success rate of about 60%. For me it has been a miracle life saver. It also has a rate of side effects of about 80%. Given the choice; of only 80% side effects, one goes for the thalidomide. I've had a few side effects but somehow survived them all. The one that is currently hitting me hard is peripheral neuropathy. It is so bad my oncologist is seriously considering discontinuing the thalidomide treatment. The implications of that are almost unthinkable. For those who are wondering. Yes, my A1c has drifted up to 6.2 being out of the 5s for the first time in about a half dozen years. This could be attributed to chemo courses of dexamethasone, a steroid on steroids or simply to a more relaxed attitude to bread and potatoes. Coincidentally the most recent chemo course was incredibly successful. The indicator of rogue immunoglobulin dropped from 17 to 10 which is phenomenal. Yes, I have tried evening primrose oil combined with alpha lipoic acid. This is where I need folk who are prepared to go the hard yards as there could be drug interactions. If you have a sound science background and are willing to help please email me. I need all the information I can get in order to have a well informed conversation with my GP and oncologist. Best wishes,  SignatureQuentin Grady ^ ^ / New Zealand, >#,#< [ / \ /\ "... and the blind dog was leading." http://homepages.paradise.net.nz/quentin > G'day G'day Folks, > [quoted text clipped - 44 lines] > > Best wishes, With hand on heart, I wish you all the best advice in the world - I pray someone out there can help you to make the right choices on what the next course of action should be to keeping you leaping through life. Keep being beautiful, Quentin. This post not CC'd by email On Wed, 02 Jan 2008 09:23:44 GMT, "Helen Back" <SiriusC-63@hotmail.co.uk> wrote: >With hand on heart, I wish you all the best advice in the world - I pray >someone out there can help you to make the right choices on what the next >course of action should be to keeping you leaping through life. > >Keep being beautiful, Quentin. G'day G'day Helen, Thank you for the best wishes. People are emailing me with offers which is what I desperately need at the moment. Best wishes, SignatureQuentin Grady ^ ^ / New Zealand, >#,#< [ / \ /\ "... and the blind dog was leading." http://homepages.paradise.net.nz/quentin > This post not CC'd by email > On Wed, 02 Jan 2008 09:23:44 GMT, "Helen Back" [quoted text clipped - 12 lines] > > Best wishes, I also send you my very best wishes, Quentin! I am glad you are getting some of the technical assistance for which you are looking! You are one of the brightest starts on this site, and I wish you well! Gillian > Thank you for the best wishes. People are emailing me with offers >which is what I desperately need at the moment. Quentin, if your research team could use someone with time but not the specific skills you're looking for - give me a yell. Nicky. T2 dx 05/04 + underactive thyroid D&E, 100ug thyroxine Last A1c 5.6% BMI 25 >> G'day G'day Folks, >> [quoted text clipped - 50 lines] > > Keep being beautiful, Quentin. Dear Quentin, I have been thinking of you lately with plans to write, so will follow with my plans to do so. I have an IVIg infusion coming up on the 11th, and I have an idea I want to put before my endo. I want to drop my carb intake as low as he will let me to see if it will have a positive effect on my pain side effects from the drug used. I've been searching the different drugs used, and found that different brands can have different effects. Why does it take so much effort to stay alive and virile? Hang in there man! I'm with you!- Ragdoll Billie http://andlifegoesononedayonestepatatime.blogspot.com/ Striving for a world without Myasthenia Gravis http://www.myasthenia.org/amg_whatismg.cfm On 1/2/08 1:23 AM, in article AKIej.23201$h35.5275@newsfe2-gui.ntli.net, >> G'day G'day Folks, >> [quoted text clipped - 50 lines] > > Keep being beautiful, Quentin. Quentin, I couldn't say what Helen has said nearly as well. Please accept my heartfelt support to your problem. I can't help, but I know there are several here who can. Take care, SignatureMartha T2 Canada 1500mg. Metformin, 4mg. Avandia > G'day G'day Folks, > [quoted text clipped - 42 lines] > information I can get in order to have a well informed conversation > with my GP and oncologist. Sorry to hear that Quentin. Wish I could be of more help. This post not CC'd by email On Wed, 02 Jan 2008 09:52:04 GMT, "Julie Bove" <juliebove@verizon.net> wrote: >Sorry to hear that Quentin. Wish I could be of more help. Thank you, SignatureQuentin Grady ^ ^ / New Zealand, >#,#< [ / \ /\ "... and the blind dog was leading." http://homepages.paradise.net.nz/quentin Sadly i have no answers to give but i do offer my support and best wishes. KROM > G'day G'day Folks, > [quoted text clipped - 44 lines] > > Best wishes, This post not CC'd by email On Wed, 2 Jan 2008 07:42:55 -0600, "krom" >Sadly i have no answers to give but i do offer my support and best wishes. > >KROM Thank you, SignatureQuentin Grady ^ ^ / New Zealand, >#,#< [ / \ /\ "... and the blind dog was leading." http://homepages.paradise.net.nz/quentin > G'day G'day Folks, > [quoted text clipped - 51 lines] > > http://homepages.paradise.net.nz/quentin I also have no answers, but would like to relate to you a line from Walt Whitman's "Song of Myself" that has seen me through many a rough patch: "Divine am I inside and out, and I make holy whatever I touch or am touch'd from" Best wishes, Black Seamus Murphy This post not CC'd by email On Wed, 2 Jan 2008 08:44:06 -0800 (PST), Black Seamus <blackseamus@gmail.com> wrote: >I also have no answers, but would like to relate to you a line from >Walt Whitman's "Song of Myself" that has seen me through many a rough [quoted text clipped - 5 lines] >Best wishes, >Black Seamus Murphy Thank you. SignatureQuentin Grady ^ ^ / New Zealand, >#,#< [ / \ /\ "... and the blind dog was leading." http://homepages.paradise.net.nz/quentin > G'day G'day Folks, > [quoted text clipped - 44 lines] > > Best wishes, Quentin, you have been a very supporting person on the newsgroups for a number of years now. I hope that they don't remove you from the thalidimide, being as it has given you life this far, and seems to be working........... i hope that you can come up with something to deal with the neuropathy as well unfortunately, i can only offer my sympathies while you are having this time of trouble......... i lack the scientific background to understand the drug interactions ((((((((((((((((((((((((HUGS))))))))))))))))))))))))))))) kate : G'day G'day Folks, : It is with some trepidation that I make this post. One option is to : carry on as though nothing untoward is happening for me. People out : there need support which I'm capable of giving. Having a meaningful : existence is important to personal survival. Many people with worse : situations than my own manage to carry on supporting others here. : I'd like to do the same without invoking a stressful situation. : However at this moment in time I need the help of other people, people : who are willing to devote some time to finding solutions where : solutions are unlikely to have been found before. : You see things are not going well for me at the moment. Most regular : posters will know I have multiple myeloma, MM, the bone marrow cancer [quoted text clipped - 11 lines] : : The implications of that are almost unthinkable. : For those who are wondering. : Yes, my A1c has drifted up to 6.2 being out of the 5s for the first : time in about a half dozen years. This could be attributed to chemo : courses of dexamethasone, a steroid on steroids or simply to a more : relaxed attitude to bread and potatoes. : Coincidentally the most recent chemo course was incredibly successful. : The indicator of rogue immunoglobulin dropped from 17 to 10 which is : phenomenal. : Yes, I have tried evening primrose oil combined with alpha lipoic : acid. This is where I need folk who are prepared to go the hard yards : as there could be drug interactions. If you have a sound science : background and are willing to help please email me. I need all the : information I can get in order to have a well informed conversation : with my GP and oncologist. : Best wishes, : http://homepages.paradise.net.nz/quentin Quesntin, I am so sorry to hear this. I can't help, but I do hope tht those more experienced in the ways of neuropathies can come up with some ideas for you. Meanwhile, if a few otatoes or bread give you comfort, indulge, but only mildly:-) (((((((((((((((((((((((((((Hugs))))))))))))))))))))))))))) Wendy Quentin, unfortunately I dont have the knowledge or the ability to check websites as I only have webtv. I wish I could help in some scientific manner, but I cant, But i can offer you emotional support if you want to talk to me, you have my address. Since I found out my daughter is pregnant, I have been attending Saturday services, I am going to ask the Rabbi to say a special prayer for you. On Friday, when I light the candles, I will also pray for you My prayers are with you Quentin. Loretta This post not CC'd by email On Wed, 2 Jan 2008 15:03:27 -0500, sassybklynlady@webtv.net (Loretta Eisenberg) wrote: >Quentin, unfortunately I dont have the knowledge or the ability to check >websites as I only have webtv. I wish I could help in some scientific [quoted text clipped - 8 lines] > >Loretta G'day G'day Loretta et al, Thank you for your kind wishes and prayers. Please excuse me not thanking everyone individually. I know I'm well loved by many people here and just knowing that gives me strength. This morning is a bit of a struggle and I need to attend to the practicalities of life. Best wishes, SignatureQuentin Grady ^ ^ / New Zealand, >#,#< [ / \ /\ "... and the blind dog was leading." http://homepages.paradise.net.nz/quentin Quentin -- I'm so glad you're getting responses so quickly -- no surprise there will all the science-minded folks here so generous with their time. I know you'll get all the help you need. I'll be thinking of you -- be well. SignatureBlueBrooke T2/D&E/June 2005 May 2007 A1c 5.5 Oct 2007 Yellow Belt! Yeah! Hi Quentin: > Most regular > posters will know I have multiple myeloma, MM, the bone marrow cancer [quoted text clipped - 13 lines] > The indicator of rogue immunoglobulin dropped from 17 to 10 which is > phenomenal. Multiple Myeloma Updated: October 12, 2007 * Comprehensive overview of Multiple Myeloma * Explore your treatment options * Learn about new developments * Read medical journal abstracts * Find doctors, hospitals, research centers More Information About the Guidebook Introduction Multiple myeloma (MM) is one of several cancers categorized as "plasma cell dyscrasias." They account for 10% of all blood system malignancies. The immune system has several types of cells that work together to fight infection and disease. Lymphocytes are the main immune system cell types. When B-cell lymphocytes respond to an infection, they mature and change into plasma cells, which produce and release proteins called immunoglobulins (antibodies) that attack and help kill disease-causing germs. But, when these plasma cells grow out of control, they can produce tumors that in several sites, especially in bone marrow (plasmacytomas). When these tumors grow in multiple sites, they are called multiple myeloma (MM). - http://tinyurl.com/2uejx2 Multiple Myeloma Cancer Center - http://tinyurl.com/2zdus8 Multiple myeloma therapy, compound from marine bacteria shows potential - http://www.medicalnewstoday.com/articles/33560.php (2005 artical) "In preclinical studies, NPI-0052 blocks a wider range of proteasome activities than bortezomib, say the researchers, and works at lower doses. NPI-0052 also appears to be less toxic to normal cells. Bortezomib is currently given by intravenous infusion. "NPI-0052 can be given orally, although the first clinical trials will be using the intravenous route," says Paul Richardson, M.D, who is also a co-author in this study and will be leading the Phase-I clinical trial in myeloma at Dana-Farber." Scholar.google search for NPI-0052 - http://tinyurl.com/397oz6 (Salinosporamide A). The proteasome inhibitor NPI-0052 is a more effective inducer of apoptosis than bortezomib in lymphocytes from patients with chronic lymphocytic leukemia - http://mct.aacrjournals.org/cgi/content/full/5/7/1836 Citations of Ruiz artical above - http://tinyurl.com/2p8t9q - such as NPI-0052, a novel proteasome inhibitor, induces caspase-8 and ROS-dependent apoptosis alone and in combination with HDAC inhibitors in leukemia cells - http://bloodjournal.hematologylibrary.org/cgi/content/abstract/110/1/267 Google Groups Archives on Multiple Myeloma prior to my post on the alt.support.cancer newsgroup Sunday afternoon - http://tinyurl.com/23chmb. I am waiting for a Google Group archive of a long post covering previous e-mails to QG since certainty of receipts seems to be a problem. Frank This post not CC'd by email On Mon, 07 Jan 2008 05:06:15 -0500, Jefferson <fwroy@adelphia.netexopheno> wrote: >Hi Quentin: > [quoted text clipped - 15 lines] >> The indicator of rogue immunoglobulin dropped from 17 to 10 which is >> phenomenal. G'day G'day Frank, Thank you for all the information on treatment for multiple myeloma. It helps me have intelligent conversations with my oncologist or his interns. (My favourite intern is called Susan. Most of them a very good she however seems smarter than most. It is easy to spot that she has read my notes, discussed them and given them considerable thought. Those who read Terry Pratchet will recognise an irony here. Perhaps Susan is one of my favourite Terry Pratchet characters.) I've tried to reply to your emails. Comcast however have decided my emails are spam thanks largely to me using Incredimail. Repeatedly trying to reach you has only made things worse as I discovered when I approached them to have the spam block removed. All the trying has caused them to deny me access on the grounds that a large volume of spam has originated from the isp number. There is a lesson for others here. Explaining that I need your help has had zero effect. In the mean time I may need to reply via a third party. [continued at the end of the post] >Multiple Myeloma > [quoted text clipped - 59 lines] > >Frank Frank. When you look at treatment for MM it is possible that you are considering only the scientific efficacy of various treatments. This of course is not how it happens here in NZ. Cost is of major concern. Fortunately my oncologist is at the top of the tree as it were. What he says goes when doctors discuss my treatment. Well on one occasion he considered a new treatment after the stem cell treatment failed completely. The catch was he was allocated FOUR treatments that year. He had to choose who to give them to. It is then that one realises one's worth to society is calculated with a mathematical formula. As it happened thalidomide treatment became available and the question was not put. Best wishes, SignatureQuentin Grady ^ ^ / New Zealand, >#,#< [ / \ /\ "... and the blind dog was leading." http://homepages.paradise.net.nz/quentin > Google Groups Archives on Multiple Myeloma prior to my post on the > alt.support.cancer newsgroup Sunday afternoon - http://tinyurl.com/23chmb. > I am waiting for a Google Group archive of a long post covering previous > e-mails to QG since certainty of receipts seems to be a problem. Ok, my post is the second one listed for "Multiple Myeloma Therapy"+Jefferson - http://tinyurl.com/2l3lf5. This was a long post but it is not likely that I will post in that newsgroup often. Frank http://HeartMDPhD.com/BeHealthy > G'day G'day Folks, > [quoted text clipped - 51 lines] > > http://homepages.paradise.net.nz/quentin Andrew wrote: > http:// All aboard the spam tram. All convicted neighbors and satan sockpuppets. Andrew needs rebuke material. |
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