Good luck and God Bless your Myeloma Journey/ editor@myelomasurvival.com
For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1
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Yesterday was a big day for me. I had a port installed in my chest when I was first diagnosed in 2006. I have had two Stem Cell Transplants, 9 major hits with chemo, and over five years of VTd maintenance. In February, I was MRD negative for the second year in a row, and I finally feel I can put the last physical reminder of my myeloma in the past. My chemo port must go. To quote the members of the rock group The Who, "I'M FREE!". I have had my chemo port in for a little over 9 and 1/2 years, and my doctor said he had never had a patient with a port in that long. Just for your information, removal is accomplished with just a local anesthetic. For me it did not hurt too much, however he mentioned mine was the hardest of any he had ever removed, and it took a long time to get it removed. I took a page out of Pat Killingsworth's playbook and took a few selfies. I think Dr. B did a great job, and I thank him for the care he took in removing it with the least amount of pain. He mentioned that most ports have a coating on them which prevents your flesh from attaching to the port material. Mine was in for such a long time this material was no longer present and was the cause for the difficult removal. Dr. B mentioned that I got a lot of good use out of it, because it appeared to be heavily accessed. Well now finally, I'M FREE.
Good luck and God Bless your Myeloma Journey/ editor@myelomasurvival.com For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1
8 Comments
Jack Aiello
8/24/2015 06:26:16 am
Just letting readers know that the port you're referring too is a "mediport" which resides complete under the skin. When I had mine removed after 7 years, the doc said that was the longest he had seen so, indeed, 9.5 yrs is very long. At the time mine was no longer effective doing blood draws but still worked for aredia/zometa infusions.
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8/24/2015 10:51:05 am
Jack thanks for the added info. Mine worked to the end, however once in a while they had to use some special treatment to get it flowing again. I think they did that 2 or 3 times.
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Mark
8/24/2015 09:44:40 pm
Congrats! One more step away from your time having myeloma! Fortunately I never needed any type of port since I only did 4 cycles of induction and no maintenance drugs. Of course they put in a central line for my auto and my allo. I am amazed that patients can use as much drugs as you did for such a long time and be doing so well. The body is amazing in its ability to recover.
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8/26/2015 09:25:48 am
Mark, you have always been my allo miracle, and beat the historic poor TRM. My biggest problem is not the chemo it is the latent effects of the disease which ravaged my kidneys, TIA's and brain damage, neuropathy, and who knows what else it screwed up before the drugs knocked it out. I just wish we could have found it before it ravages your body.
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JPC
8/29/2015 05:23:18 am
Congratulations on the MRD- after 8 years. WOW. Thank you for continuing to post your story so that others can learn from it. Godspeed from here on out!!!
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8/29/2015 10:21:17 am
Thanks JPC, I just hope we continue the progress all the way to cure for all myeloma patients. That is my hope with the new Myeloma Crowd Research Initiative. Gary
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Kathy Lothson
9/3/2015 04:18:11 pm
Hello Gary- Thanks so much for sharing your incredible journey! It's such a blessing to hear you are now cancer free! I was just diagnosed w/myeloma a few days ago. I am on an emotional rollercoaster right now & trying my best to come to terms w/everything. I want to find out as much as I can regarding myeloma. I have been referred to Loyola. I was wondering where you had received your treatments? Any suggestions will be greatly appreciated! Thank-you, Kathy
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9/8/2015 12:50:26 am
Kathy, The first few weeks is always the hardest. If you go to www.Myeloma survival.com you will see a list of the most popular blog posts on my site. How to beat the average Myeloma life expectancy, and how to educate yourself are a good start. Also on the bottom of the home page are some great resources. I follow the Myeloma Crowd site, and Pat's myeloma blog. The MMRF and IMF sites are good resources too. I was treated at Mayo Jacksonville first and then UAMS. Also on the home page you will see survival statistics by center, and a page of myeloma specialists. Good luck and may God Bless your Myeloma journey. Gary
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