CancerCompass message board discussion started by JaneMGUSuk on 3/6/2008 http://www.cancercompass.com/message-board/message/all,21736,0.htm Thu, 04 Dec 2008 00:00:00 GMT Thu, 04 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi everyone,Went for my follow up today after being told by my Haematologist lastweek, that she was 80% sure my MGUS had turned to myeloma and that Imay need to start chemo. My Haemo had a video conference with a bigUK cancer specialist hospital, with several myeloma specialists inattendance. STILL they are not sure whether I need chemo, some said Idid and some disagreed, in the end they told my haemo it was back toher to decide the best course of action for me. I am such a difficultcase that no one seems to know what is going on. I asked for adiagnosis and my Haemo says I now have smouldering myeloma.My latest results are the same as the ones from a week agoBone Marrow Plasma 25%IGg paraprotein 44.8 (UK) 4480 (US)IGM is too lowIGA is too lowAll other bloods and urine are fineB2 microglobulin is being testedBlood viscosity is being testedBlood and urine taken again today dont know when I will get theresults.I forgot to ask for the results of my MRI which was done on Tuesday4th March.Due to my recurrent infections my Haemo suggested to the panel ofspecialists that I may benefit from Immunoglobulin transfusion, someof the panel said it could work and others disagreed, but my Haemohas said it wouldn't hurt to try it. I have now been signed over tothe care of the cancer unit (Macmillan Unit) at my hospital, ratherthan the Haemo department. I Have to attend on Wednesday 12th Marchat 09:00 for my first transfusion of SANDOGLOBULIN, it will take allday as if it is done too fast there is a risk of blood clots and/orallergic reaction. If my blood is already to thick/viscous then Iwont be able to have the transfusion until my blood is thinned out.Sandoglobulin is basically a mixture of Immunoglobulins from avariety of blood donors, its heated and dried to help remove anyviruses such as HIV and Hep C and then it is mixed with saline andhooked up to an IV drip. I have agreed to try the treatment but I amobviously worried, but its got to be better than starting chemo.Does anyone have any info on this treatment, good or bad so that Ican be helped to make a more informed decision? Has anyone heard ofthis treatment, or know anyone that has had this treatment? JaneMGUSuk Thu, 06 Mar 2008 00:00:00 GMT  Dear Jane: Do all the things we discussed re helping yourself and be aggressive. I have heard of this but for other diseases and it has been ages since I was around anything similar.  google it and read as much as you can. When I first had MM I was on coumadin (blood thinner) so I do not see why they cannot do that. I personally believe the proceedure can help you so ask them about giving a blood thinner. Do all you can naturally to boost your immune system. Doctors sometimes are their own worst enemies and afraid to take a stand...I googled Sandoglobulin and up came dozens of links.  It appears to boost the IGG to normal levels. so read up about it and don't be afraid to ask questions.  You can go to www.cancenter.com and they have live online help. go there and ask your questions. take care MMS On 3/6/2008 JaneMGUSuk wrote:Hi everyone,Went for my follow up today after being told by my Haematologist lastweek, that she was 80% sure my MGUS had turned to myeloma and that Imay need to start chemo. My Haemo had a video conference with a bigUK cancer specialist hospital, with several myeloma specialists inattendance. STILL they are not sure whether I need chemo, some said Idid and some disagreed, in the end they told my haemo it was back toher to decide the best course of action for me. I am such a difficultcase that no one seems to know what is going on. I asked for adiagnosis and my Haemo says I now have smouldering myeloma.My latest results are the same as the ones from a week agoBone Marrow Plasma 25%IGg paraprotein 44.8 (UK) 4480 (US)IGM is too lowIGA is too lowAll other bloods and urine are fineB2 microglobulin is being testedBlood viscosity is being testedBlood and urine taken again today dont know when I will get theresults.I forgot to ask for the results of my MRI which was done on Tuesday4th March.Due to my recurrent infections my Haemo suggested to the panel ofspecialists that I may benefit from Immunoglobulin transfusion, someof the panel said it could work and others disagreed, but my Haemohas said it wouldn't hurt to try it. I have now been signed over tothe care of the cancer unit (Macmillan Unit) at my hospital, ratherthan the Haemo department. I Have to attend on Wednesday 12th Marchat 09:00 for my first transfusion of SANDOGLOBULIN, it will take allday as if it is done too fast there is a risk of blood clots and/orallergic reaction. If my blood is already to thick/viscous then Iwont be able to have the transfusion until my blood is thinned out.Sandoglobulin is basically a mixture of Immunoglobulins from avariety of blood donors, its heated and dried to help remove anyviruses such as HIV and Hep C and then it is mixed with saline andhooked up to an IV drip. I have agreed to try the treatment but I amobviously worried, but its got to be better than starting chemo.Does anyone have any info on this treatment, good or bad so that Ican be helped to make a more informed decision? Has anyone heard ofthis treatment, or know anyone that has had this treatment?  mmsurvivor Thu, 06 Mar 2008 00:00:00 GMT Hi, Jane.After doing an internet search, this is one of the first things that I found:WARNING:  Immune globulin intravenous (IGIV) may cause kidney failure. Tell your doctor if you are over 65 years old or if you have or have ever had kidney disease, diabetes, sepsis, plasma cell disease, or volume depletion. Tell your doctor if you are taking amikacin (Amikin), gentamicin) Garamycin), streptomycin, or other medications that can cause kidney damage. Keep all appointments with your doctor and the laboratory. Your doctor will order certain lab tests to check your response to IGIV. If you experience any of the following symptoms, call your doctor immediately: decreasd urination, sudden weight gain, swelling of the legs or ankles, or shortness of breath. www.nlm.nih.gov/medlineplus/druginfoWouldn't plasma cell disease  include all types of Myeloma? - Sue  roadrunner Mon, 10 Mar 2008 00:00:00 GMT Hi Sue,Yes I am also confused as the IV Immunoglobulin is mainly IGg and my IGg although diseased is already sky high. Like you I managed to find some info and it also mentioned about kidney damage, kidney failure and even death through kidney failure! Luckily I am only 42 and have never had any kidney problems, but I am worried about the risk especially as my Haematologist said there are no side effects and I found quite a few including headache in 50% of cases and nausea, fatigue, severe allergic reaction, rashes and lots more! I am definately going to question my Haemo when I see her wednesday, way before she gets a needle anywhere near me :-) Thanks for doing some research for me it is much appreciated.Best wishes love Jane x JaneMGUSuk Mon, 10 Mar 2008 00:00:00 GMT Hi, you may be in similar position with my mother - her MM was only detected due to reccurrent infections. Even though she had good B2M and creatinine and a 15% plasma cells her doctor insisted on starting chemo straight away. I didn't know any of that as was myself in the hospital trying not to lose a baby, so my parents didn't tell me until after birth. by that time mom finished Thal/dex/Velcade course of 6 which didn't help at all. Now she is on rev/dex/dox AND, after a particularly bad month of flue doing IG drips monthly. she is feeling  much better, but I always have that question in my brain: WHY did they start chemo??? However, she had her 4th course last week and another oncologist told her that were she not doing chemo she would be dead by now ( a year after diagnosys). God knows. However, I wish you all the best - if you can delay chemo, do it - it doesn't look pleasant and side effects are there to stay, at least in mom's case....I am on --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- - please drop me a line if you find out anything that helps you decide... YanaMom Mon, 10 Mar 2008 00:00:00 GMT  On 3/6/2008 JaneMGUSuk wrote:Hi everyone,Went for my follow up today after being told by my Haematologist lastweek, that she was 80% sure my MGUS had turned to myeloma and that Imay need to start chemo. My Haemo had a video conference with a bigUK cancer specialist hospital, with several myeloma specialists inattendance. STILL they are not sure whether I need chemo, some said Idid and some disagreed, in the end they told my haemo it was back toher to decide the best course of action for me. I am such a difficultcase that no one seems to know what is going on. I asked for adiagnosis and my Haemo says I now have smouldering myeloma.My latest results are the same as the ones from a week agoBone Marrow Plasma 25%IGg paraprotein 44.8 (UK) 4480 (US)IGM is too lowIGA is too lowAll other bloods and urine are fineB2 microglobulin is being testedBlood viscosity is being testedBlood and urine taken again today dont know when I will get theresults.I forgot to ask for the results of my MRI which was done on Tuesday4th March.Due to my recurrent infections my Haemo suggested to the panel ofspecialists that I may benefit from Immunoglobulin transfusion, someof the panel said it could work and others disagreed, but my Haemohas said it wouldn't hurt to try it. I have now been signed over tothe care of the cancer unit (Macmillan Unit) at my hospital, ratherthan the Haemo department. I Have to attend on Wednesday 12th Marchat 09:00 for my first transfusion of SANDOGLOBULIN, it will take allday as if it is done too fast there is a risk of blood clots and/orallergic reaction. If my blood is already to thick/viscous then Iwont be able to have the transfusion until my blood is thinned out.Sandoglobulin is basically a mixture of Immunoglobulins from avariety of blood donors, its heated and dried to help remove anyviruses such as HIV and Hep C and then it is mixed with saline andhooked up to an IV drip. I have agreed to try the treatment but I amobviously worried, but its got to be better than starting chemo.Does anyone have any info on this treatment, good or bad so that Ican be helped to make a more informed decision? Has anyone heard ofthis treatment, or know anyone that has had this treatment? Hi,  my suggestion is that you should see a Myeloma  specialist, they know better how to treat you and all the test they should take. There should be no guessing on what they should do. Find a specialist  and go right now. gemini Thu, 20 Mar 2008 00:00:00 GMT Thanks for your reply,I can't go to a myeloma specialist, because there isn't one in my area, I would have to move house to be in an area where there is one, or pay to see one privately, which I can't afford. In the UK we have a National Health Service which is free but limits us to who we can see in the way of doctors and specialists. I am seeing my Haematologist on April 9th and I will see how my results are doing and see how my consultation goes and then if I am not happy I will speak to my family doctor and ask to be referred to the Sir John Radcliffe Hpospital in Oxford its about a 45 minute journey but it will be worth it and there are myeloma specialists there too.Thanks again for your kind messageTake care and best wishes from Jane x JaneMGUSuk Thu, 20 Mar 2008 00:00:00 GMT Hi Jane,   I hope you do go  to a specialist , i had some bad experience with doctors that don't know about the disease.  If they have to ask other doctors about treatment its not good.  If the specialist are only 45 minutes away thats not bad at all. I go at least 1 hour away  and i go every month and when i went for treatment 2 times a week. Your life is the most important thing don't worry about the traveling.  Did they do a bone marrow, thats how they tell how much myeloma you have , and total body X-ray, and mri plus a lot a blood work.  I wish good luck, i had chemo and steroids and then a stem cell transplant.  I'm doing well so far and not on any medication for 10 months.. Take care  Marion gemini Thu, 20 Mar 2008 00:00:00 GMT