Comments for Cindy's Multiple Myeloma Blog http://cakassel55.healthblogs.org A healthblogs.org weblog Thu, 28 Aug 2008 05:36:21 +0000 http://wordpress.org/?v=2.5.1 Comment on More Tests to Come by barry http://cakassel55.healthblogs.org/2008/07/30/more-tests-to-come/#comment-1175 barry Wed, 20 Aug 2008 00:31:02 +0000 http://cakassel55.healthblogs.org/?p=85#comment-1175 Recently diagnosed with MM (two months). Getting excellent results with Velcade. Just wanted to let you know. Recently diagnosed with MM (two months). Getting excellent results with Velcade. Just wanted to let you know.

]]> Comment on More Tests to Come by Roobeedoo http://cakassel55.healthblogs.org/2008/07/30/more-tests-to-come/#comment-1174 Roobeedoo Thu, 31 Jul 2008 13:02:45 +0000 http://cakassel55.healthblogs.org/?p=85#comment-1174 Well you are certainly keeping active. That's a lot of housework for one day! In the UK, everyone over (I think) 60 has recently been sent a bowel screening kit to do the "three days of poo" test. It's a great idea, but not very popular! You can overhear some fascinating conversations in queues at the Post Office these days about people misreading the instructions and having to fish their doings out of the toilet...! Well you are certainly keeping active. That’s a lot of housework for one day!
In the UK, everyone over (I think) 60 has recently been sent a bowel screening kit to do the “three days of poo” test. It’s a great idea, but not very popular! You can overhear some fascinating conversations in queues at the Post Office these days about people misreading the instructions and having to fish their doings out of the toilet…!

]]> Comment on My Multiple Myeloma (MM) Story by Terry OGrady http://cakassel55.healthblogs.org/my-multiple-myeloma-mm-story/#comment-1155 Terry OGrady Sat, 26 Jul 2008 12:18:54 +0000 http://cakassel55.healthblogs.org/my-multiple-myeloma-mm-story/#comment-1155 Hi I have just come upon your blog and I have found it very interesting. My mother has mm, she is 79 and is taking kimo tablets and a drip to protect her bones. She cannot understand why she is so bad on her legs as the doctors are very happy with her progress. She has because of her immobility and pain, decided to stop taking her medication. She had been on steroids but not anymore so we (doctors as well) dont know why she is in so much pain. The doctors are trying to come up with some other sort of treatment. No one mentioned cell transplant although maybe her age is a consideration. I would love to know your thoughts on this. By the way I am from Ireland. Terry Hi
I have just come upon your blog and I have found it very
interesting. My mother has mm, she is 79 and is taking
kimo tablets and a drip to protect her bones. She cannot understand why she is so bad on her legs as the doctors are very happy with her progress. She has
because of her immobility and pain, decided to stop taking her medication. She had been on steroids but not anymore so we (doctors as well) dont know why she is in so much pain. The doctors are trying to come up with some other sort of treatment. No one mentioned cell transplant although maybe her age is a consideration. I would love to know your thoughts on this. By the way I am from Ireland. Terry

]]> Comment on Checking In by Jane http://cakassel55.healthblogs.org/2008/07/16/checking-in/#comment-1093 Jane Sat, 19 Jul 2008 03:03:18 +0000 http://cakassel55.healthblogs.org/?p=82#comment-1093 Cindy you are amazingly strong and positive. With all your problems you seem quite philosophic about dealing with them one by one. My husband had a lot of trouble with his bowels after having thalidomide for myeloma and he found the best cure was good old fashioned prune juice! So perhaps you can try this. Stay optimistic - its amazing what the mind & strength of will can do to keep you going through adversity. I am sure you have many freinds who are in awe of your attitude and outlook. Thinking of you from a long way away. love Jane Cindy you are amazingly strong and positive. With all your problems you seem quite philosophic about dealing with them one by one. My husband had a lot of trouble with his bowels after having thalidomide for myeloma and he found the best cure was good old fashioned prune juice! So perhaps you can try this. Stay optimistic - its amazing what the mind & strength of will can do to keep you going through adversity. I am sure you have many freinds who are in awe of your attitude and outlook. Thinking of you from a long way away. love Jane

]]> Comment on Status after Doctor Appointments by James Hunter http://cakassel55.healthblogs.org/2008/07/04/status-after-doctor-appointments/#comment-1066 James Hunter Wed, 16 Jul 2008 03:48:20 +0000 http://cakassel55.healthblogs.org/?p=81#comment-1066 Hi Cindy, Your symptoms sound a lot like my wife's. She had a plasmacytoma on her spine that pinched the cord and left her unable to turn over in bed, much less walk. Her feet were so weak, one exercise was for her to push them against my hands like she was pushing a gas peddle, I would have to ask if she was pushing to start with. After surgery, radiation, Dex, about a year of physical therapy along with Thal/Dex and Rev/Dex Jane is now able to walk about fifty yards at a time. She has kept teaching from a wheelchair and now cooks as well. Don't give up hope. Jane was told she would probably never walk again. All of our best to you and yours. I am enjoying your blog. Jim Hi Cindy,
Your symptoms sound a lot like my wife’s. She had a plasmacytoma on her spine that pinched the cord and left her unable to turn over in bed, much less walk. Her feet were so weak, one exercise was for her to push them against my hands like she was pushing a gas peddle, I would have to ask if she was pushing to start with. After surgery, radiation, Dex, about a year of physical therapy along with Thal/Dex and Rev/Dex Jane is now able to walk about fifty yards at a time. She has kept teaching from a wheelchair and now cooks as well. Don’t give up hope. Jane was told she would probably never walk again. All of our best to you and yours. I am enjoying your blog.

Jim

]]> Comment on Status after Doctor Appointments by cakassel55 http://cakassel55.healthblogs.org/2008/07/04/status-after-doctor-appointments/#comment-1005 cakassel55 Tue, 08 Jul 2008 18:05:25 +0000 http://cakassel55.healthblogs.org/?p=81#comment-1005 Barb, I will try to help you in any way I can, but need to know what kind of help do you need or want? I'd ask a Social Worker or nurse at your doctor's office what kind of support there is in your area first. Google IMF.org and look around there...it's the International Myeloma Foundation. They will mail you literature about MM. Contact the LLS (Leukemia, Lymphoma Society). They also support Myeloma. If you google them you can find a "chapter" in your area. Google "myeloma" and you will come upon lots of helpful stuff. On the left column of my blog is a list of sites under "BLOGROLL". Check out "Beth Morgan's Blog" and "Margaret's Corner" and "Don's Blog". These are individuals with MM and their blogs have lots more factual info about MM. I think it's Beth who has lots of research links. Also, google Acor.org. Go down to "Rare Cancers" then find "myeloma". This is a very helpful "list serve" where you can join (free). You can either just read the entries or ask a question & people are very helpful & responsive. I get the 'one consolidated email' a day..I forget how it's termed..but do not let it give you individual emails b/c it gets overwhelming. I hope this helps. If you have specific ?'s let me know. Good luck. Barb,
I will try to help you in any way I can, but need to know what kind of help do you need or want?
I’d ask a Social Worker or nurse at your doctor’s office what kind of support there is in your area first.
Google IMF.org and look around there…it’s the International Myeloma Foundation. They will mail you literature about MM. Contact the LLS (Leukemia, Lymphoma Society). They also support Myeloma. If you google them you can find a “chapter” in your area.
Google “myeloma” and you will come upon lots of helpful stuff.
On the left column of my blog is a list of sites under “BLOGROLL”. Check out “Beth Morgan’s Blog” and “Margaret’s Corner” and “Don’s Blog”. These are individuals with MM and their blogs have lots more factual info about MM. I think it’s Beth who has lots of research links.
Also, google Acor.org. Go down to “Rare Cancers” then find “myeloma”. This is a very helpful “list serve” where you can join (free). You can either just read the entries or ask a question & people are very helpful & responsive. I get the ‘one consolidated email’ a day..I forget how it’s termed..but do not let it give you individual emails b/c it gets overwhelming.
I hope this helps. If you have specific ?’s let me know. Good luck.

]]> Comment on Status after Doctor Appointments by Barb http://cakassel55.healthblogs.org/2008/07/04/status-after-doctor-appointments/#comment-1004 Barb Tue, 08 Jul 2008 14:07:07 +0000 http://cakassel55.healthblogs.org/?p=81#comment-1004 Hi....I am new to MM and to Blogging. My sister found this site for me. Not really sure what to do....any suggestions? Thanks Hi….I am new to MM and to Blogging. My sister found this site for me. Not really sure what to do….any suggestions? Thanks

]]> Comment on Urologist Appointment Today, Wednesday, 7/2/08 by Roobeedoo http://cakassel55.healthblogs.org/2008/07/02/urologist-appointment-today-wednesday-7208/#comment-974 Roobeedoo Fri, 04 Jul 2008 07:59:04 +0000 http://cakassel55.healthblogs.org/?p=80#comment-974 OMG this makes me so very angry! It's not as if it is a free service either! Is there a formal system for complaints / feedback? That is just not good enough! OMG this makes me so very angry! It’s not as if it is a free service either! Is there a formal system for complaints / feedback? That is just not good enough!

]]> Comment on MRI Results = Ride Ahead? by Roobeedoo http://cakassel55.healthblogs.org/2008/06/27/mri-results-ride-ahead/#comment-948 Roobeedoo Mon, 30 Jun 2008 08:55:19 +0000 http://cakassel55.healthblogs.org/?p=79#comment-948 Drink cranberry juice - not the kind with lots of sugar in, natural stuf.! It helps move the urine and stops it stinging. It works! I hope you get the right help at the right time. Sometimes too much choice is worse than none at all - I wouldn't know where to begin if I had to "find" a doctor for each aspect of my husband's care. But you are definitely doing the right thing ditching the one who only had 15 minutes on his alarm clock - grrr. Drink cranberry juice - not the kind with lots of sugar in, natural stuf.! It helps move the urine and stops it stinging. It works!
I hope you get the right help at the right time. Sometimes too much choice is worse than none at all - I wouldn’t know where to begin if I had to “find” a doctor for each aspect of my husband’s care. But you are definitely doing the right thing ditching the one who only had 15 minutes on his alarm clock - grrr.

]]> Comment on MRI Results = Ride Ahead? by wendy http://cakassel55.healthblogs.org/2008/06/27/mri-results-ride-ahead/#comment-941 wendy Sun, 29 Jun 2008 04:32:29 +0000 http://cakassel55.healthblogs.org/?p=79#comment-941 Cindy, I have been reading your blogs for quite a while, but have never posted a comment. My dad has mm. was first diagnosed because his regular doctor found an unusual amount of protein in his urine. We have been everywhere.. boston, family clinics etc, plus his usual doctors here in syracuse. I wanted to share this site with him, but my mom thought that perhaps that may make him worry more about things such as pain that he has and what not. Finally, i decided that i have learned so much about the disease from reading your blogs that I printed it and gave it to him to read through. I hope it was the right thing to do as he is a very high strung man and already has very high anxiety. He does not have the positive outlook like you do and I'm hoping by reading this it will rub off a little. Thank you so much for sharing your experiences with so many of us. You have no idea how much it has helped me and hopefullly it will do the same for my dad Cindy,
I have been reading your blogs for quite a while, but have never posted a comment. My dad has mm. was first diagnosed because his regular doctor found an unusual amount of protein in his urine. We have been everywhere.. boston, family clinics etc, plus his usual doctors here in syracuse. I wanted to share this site with him, but my mom thought that perhaps that may make him worry more about things such as pain that he has and what not. Finally, i decided that i have learned so much about the disease from reading your blogs that I printed it and gave it to him to read through. I hope it was the right thing to do as he is a very high strung man and already has very high anxiety. He does not have the positive outlook like you do and I’m hoping by reading this it will rub off a little. Thank you so much for sharing your experiences with so many of us. You have no idea how much it has helped me and hopefullly it will do the same for my dad

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