tag:blogger.com,1999:blog-3453515774251855625.post5228337318797464880..comments2024-03-19T02:22:10.994-05:00Comments on SURVIVING SURVIVORSHIP: Cancer Survivor Calamities: Radiation Induced Neuropathy RIBP; RIPN; RFS; RIFA Fighter, Cindyhttp://www.blogger.com/profile/04531766867344684064noreply@blogger.comBlogger13125tag:blogger.com,1999:blog-3453515774251855625.post-53359403225457277102014-02-07T13:55:28.514-06:002014-02-07T13:55:28.514-06:00Hi Helen - nice to meet you!
You are the first cas...Hi Helen - nice to meet you!<br />You are the first case of lumbar Plexopathy I have met. How absolutely horrible it must be. <br />I would love to read more from you.<br />What I usually do when I want to post a response to a post, or actually post a page, I do it outside of the website. Once I have it written outside of the website (Word, Notes, etc), I copy it and then go back to the comments page and paste it. Then it can be posted easier. I'm writing my response to you in Notes. <br />The reason, it only allows you to post as anonymous is (I think), because you may not be a member of google + user with a google gmail account..... ? There seems to be articles out there about that issue anyway.<br />I hope to hear more about your journey with lumbar plexopathy. As well would others I'm sure. <br /><br />Thanks, CindyA Fighter, Cindyhttps://www.blogger.com/profile/04531766867344684064noreply@blogger.comtag:blogger.com,1999:blog-3453515774251855625.post-4162542607229618682014-02-07T13:53:20.892-06:002014-02-07T13:53:20.892-06:00This comment has been removed by the author.A Fighter, Cindyhttps://www.blogger.com/profile/04531766867344684064noreply@blogger.comtag:blogger.com,1999:blog-3453515774251855625.post-37575142437078593332014-01-31T04:58:11.466-06:002014-01-31T04:58:11.466-06:00I have Lumbar Plexopathy and would like to connect...I have Lumbar Plexopathy and would like to connect with others who may have this... Only seem to be able to comment as anonymous but my name is Helen.. I wrote a longer post but keep losing them!! Is there any thing that helps lessen the progress??? Fortunately I do not have pain but more numbness ad increasing weakness in legs.. Helen Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3453515774251855625.post-26338263872903668152014-01-29T21:07:14.474-06:002014-01-29T21:07:14.474-06:00Thank you for sharing these links..Thank you for sharing these links..Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3453515774251855625.post-91887342737260962872014-01-08T16:26:37.534-06:002014-01-08T16:26:37.534-06:00Hi Joyce! Nice to meet you - although I wish it c...Hi Joyce! Nice to meet you - although I wish it could have been for better reasons! I'm sorry and saddened you are going through these late side effects of RT. Next time you go to see Dr S please give him an extra hug from me.... He is a shining star for us all. We need to clone Doc Stubblefield! :)A Fighter, Cindyhttps://www.blogger.com/profile/04531766867344684064noreply@blogger.comtag:blogger.com,1999:blog-3453515774251855625.post-75404814295444700212014-01-08T13:34:01.091-06:002014-01-08T13:34:01.091-06:00Hi Cindy, I also have the 4 R's due to RT for...Hi Cindy, I also have the 4 R's due to RT for Hodgkin's. I was treated in 2000, 2001 & 2005, having RT in 2000 & 2001. It took years before it was figured out that it was from the RT and I have had a huge progression over the last two years. Your description of what has happened and continues to happen with your hands and arms, is also happening to me. I also have the "dropped head" syndrome due to weakness of my head, neck & shoulders. I am also a patient of Dr. Stubblefield's. <br />I find it's difficult to express to people how badly this affects me due to the "at least you're alive" comment and this includes primary care docs. We definitely need more docs trained to care for survivors! I wish you all the best in your fight for a heart transplant.Joycenoreply@blogger.comtag:blogger.com,1999:blog-3453515774251855625.post-47724396591618356592014-01-06T14:10:23.870-06:002014-01-06T14:10:23.870-06:00Hi Kira - Thank you for posting.
I've heard ...Hi Kira - Thank you for posting. <br />I've heard all too often those words too. "Hey, at least you're alive!" "Cancer is gone - So don't complain...suck it up".<br />Our lives have changed dramatically. I'm trying to raise awareness that there is a problem with the way cancer is/was treated. That being the collateral damage. There now are millions of cancer survivors out there that are living longer than ever before. All are at risk of facing some sort of late effect side effect from the cancer therapies received. And they may appear at any time following therapy- immediately, or many years later. And... the symptoms of some of these side effects may not be understood by a primary care physician. But to someone trained in the field of these side effects would.... that's what millions of us need. It won't come soon enough.... but its coming! :) Nice to meet you Kira! A Fighter, Cindyhttps://www.blogger.com/profile/04531766867344684064noreply@blogger.comtag:blogger.com,1999:blog-3453515774251855625.post-23203610160498745532014-01-05T12:13:19.559-06:002014-01-05T12:13:19.559-06:00Cindy, I found this on the RIBP thread on bc.org, ...Cindy, I found this on the RIBP thread on bc.org, I helped write the step up speak out site, and "only" have to deal with lymphedema and endometrial cancer from tamoxifen. When I saw the med onc who ignored a lot of warning signs that tamoxifen was becoming a big risk for me, she cut me off saying "But you're FINE now!" <br />In this age of youTube videos of a woman dancing in the OR prior to her mastectomy, it's so helpful to see the honest truth.<br />I'm a physician, and I worked in radiation oncology, and far too often there was the attitude, "we saved your life, quit whining"<br />Thanks for writing this blog<br />Don't know how to sign in except as anonymous, sorry. Screen name on bc.org=KiraAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3453515774251855625.post-65040325345051336902014-01-05T10:29:58.865-06:002014-01-05T10:29:58.865-06:00nice to meet you too. Sometimes is good to know th...nice to meet you too. Sometimes is good to know that you are not the only one going through something-especially something as poorly understood as the long term post radiation sequela!!<br />miriamhttps://www.blogger.com/profile/09132272043198303680noreply@blogger.comtag:blogger.com,1999:blog-3453515774251855625.post-85325853435342445032014-01-03T10:22:45.113-06:002014-01-03T10:22:45.113-06:00Hi Miriam - MSKCC is an awesome place to be treat...Hi Miriam - MSKCC is an awesome place to be treated! Dr Stubblefield is incredible. He is what every doctor should be. I went to MSKCC 2 yrs ago specifically to see him regarding my progressing RIBP. I was able to stay 2 weeks and worked with his PT group too. It was a great 2 weeks. Living in TX makes it difficult to get there.<br />I spoke with Dr S on the phone yesterday. We were corresponding about my latest issue of the baroreceptor failure and paralyzed diaphragm keeping me from being a heart transplant candidate and why. <br />I agree, he is invaluable. His knowledge and compassion is immeasurable. I need to have a knowledgeable Dr clone of him here in TX. :)<br />Thanks, Miriam, for the note - It's nice to meet you!A Fighter, Cindyhttps://www.blogger.com/profile/04531766867344684064noreply@blogger.comtag:blogger.com,1999:blog-3453515774251855625.post-39692579196907751452014-01-03T08:11:12.573-06:002014-01-03T08:11:12.573-06:00Hey Cindy-1990 HD (ABVD/MOPP/extended mantle RT), ...Hey Cindy-1990 HD (ABVD/MOPP/extended mantle RT), 2013 TN BC. Didn't get adriomycin or RT for BC b/c of previous tx history. Am lucky to live in NYC and had treatment at MSKCC, so have been seeing Dr. Stubblefield for several years. He has been invaluable in terms of making sense of what is going on. miriamhttps://www.blogger.com/profile/09132272043198303680noreply@blogger.comtag:blogger.com,1999:blog-3453515774251855625.post-37763903247427622962014-01-02T18:33:43.412-06:002014-01-02T18:33:43.412-06:00Thanks Steph.... I've learned to be tenacious ...Thanks Steph.... I've learned to be tenacious from the best! :) A Fighter, Cindyhttps://www.blogger.com/profile/04531766867344684064noreply@blogger.comtag:blogger.com,1999:blog-3453515774251855625.post-83453622500328021812014-01-02T13:22:26.574-06:002014-01-02T13:22:26.574-06:00Cindy,
I applaud your tenacious spirit and your p...Cindy,<br /><br />I applaud your tenacious spirit and your persevering encouragement to us, survivors, to educate and advocate on our own behalf.<br /><br />I encourage you and stand with you as you press on demanding that your ineligibility for heart transplant be proven beyond a shadow of a doubt. The evidence that you have gathered would seem to prove that your risk may be greater in a transplant situation, but ineligible, I don't buy it yet.<br /><br />Much Love<br />Steph<br />Anonymoushttps://www.blogger.com/profile/04397275279371279401noreply@blogger.com