ROLL CALL 2022 - First Posting January 1, 2022
Comments
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Hello Matt. Been a while. Good to see you. This coming May will be my 5 year mark. Since my last rollcall update I've moved again. Left California for idaho. Two months ago I had all my teeth removed. They were falling apart due to radiation damage. Still healing from that. Still can't wear the dentures yet. My swallowing is slowly getting worse. Throat and neck are getting tighter as the years tick by. Had a 2nd stent put in the artery in my neck. Not complaining by a any means. I'm still alive.
5 years ago Matt was giving me regular advice when I was going thru treatment. His advice was invaluable to me. Thanks again Matt!
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Skiffin16 checking in Matt. I'm still alive and kicking and doing well, other than as you mentioned, summer teeth. Thanks to radiation, the gift of live that keeps on giving.
I continue enjoying retirement, art and photography as well as fishing here in Florida.
As for art, last year was pretty good. I sold a few originals, a few prints, and took many awards. I did step by step demos for three different colored pencil magazines, two of which were on the covers also. I also had a piece accepted into the Artists for Conservation Exhibit in Vancouver BC.
Update on a few members I'm aware of and that I see and interact with on FB. Tim C is well and living in Alaska, Jeff S is still ornery and won't say where Hoffa is. Unfortunately a few were lost this past year, my best bud Dawn passed, as did John G.
To all here, stay healthy and NEGU - Never Ever Give Up.
John
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Skiffin-16,
Thank you for your check-in on the Roll Call and the information about other members. While I do finally have a fB page, I really never use it or even visit it. Maybe, I will change that aspect of my personality a little and use it. I am going to give the roll call a big shove in the right direction in 2022, if you have some news to share about members please do.
How did you like my Participation Summary Table I put in? I like it, but I am already thinking of ways to make the P.S.T. (participation summary table) more valuable to the roll call.
Anyways, see you around.
CM
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Last year I finally got an Endoscopy with a Dilation, but a month later failed the swallow test so will be FT-dependent for the rest of my life due to collateral damage to esophagus for stage-3 NPC. Been that way for over 29 months, now, and quality of life is okay. Hopefully the only event in 2022 will be with my Dentist to rebuild the tops of my front lower teeth again. Go figure- I can't eat/chew, but the tops of my teeth still wear down to expose the teeth innards.
Celebrated my 13th Survivor Anniversary on 12/30/21, life is good, and Thank You Matt for keeping Hawvet's Roll Call going. It is a treasure trove to read updates from people like Skiffin, and hope some others from the 10+-year Era will do so, also.
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Hey Matt,
Thanks for keeping the roster going. Last checkin was Oct 2021, Feb 2022 - same same.
In fact, things have been very stable for several years now. It is really hard to wrap my head around how many years have passed. Just saw a few old timers checking which made me smile.
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Checking in for Roll Call 2022 from West Tennessee.
Struggling here. Found this site today. Diagnosed 8/25/21 HNC SCC HPV+ right supraglottic area primary with right and left lymph node involvement below jaw. Treatment was weekly chemo(cisplatin) and daily radiation for 7 weeks, and finished up mid November. Since completion of treatment I've had aspirational pneumonia 2x and currently fighting thrush that runs from sinuses all the way down esophagus. Haven't eaten by mouth since around 11/2/21. Nutrition has been a struggle and at this point I've lost almost 24% of my starting weight(up from 26%), and swallowing anything is near impossible. Had my follow up PET on 2/4/22 with results on 2/8/22. Results showed lymph nodes clear, but residual disease within primary mass still persisted. I go tomorrow 2/16/22 for exploratory surgery and biopsy of mass, and then follow up on March 1 to find out next steps. Send all good juju and thoughts my way.
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Thanks for posting this for 2022. Reading the names of those who passed helped not only me but countless others is a heart breaker. May they all rest in peace.
Tommy
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Greetings and best of health to all. JKINOBAY checking in here, OM since 2009 after SCC in left tonsil and lymph nodes in 2007, 35 IMRT, 7 weekly Cisplatin, still here in April, 2022. Buttttt..........just had a biopsy for a sore throat and the results are not good. SCC again but in the base of where the right tonsil was. Waiting for PET appt. Have appt with Oncologist and TORS Surgeon scheduled for next week (4/19). I'm 72 years and beat this thing for almost exactly 15 years so no room for me to complain. However, given my age, honestly I'm scared and worried about this TORS procedure. Recovery time? What to expect in terms of being able to swallow, eat, drink? Etc. So some of you "youngsters" that are up-to-date on the latest in TORS tonsilar procedures please enlighten me.
I remember getting a lot of great counsel from Soccerfreaks, Hawvet, Hondo, and others. Hope they are all still with us and doing well.
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JKINOBAY,
I did not realize until the past year or so that you were one of the “original members” to the first roll call back in 2008 when HAWVET started it. I have memorialized each of the original 18 members by putting the letters (OM) next to their name. Anyway, it was nice to have you check-in to the Roll Call 2022. I am in the process of updating it, right now. So, stay in touch and check back often. I often do have a few surprises for members.
CivilMatt
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Thanks CivilMatt for all you do that nobody knows about. I'm sure it is alot.
My situation is concerning but not the end of my story. My recent diagnosis of SCC in the remnant of my right tonsil base is identical, but not necessarily related to my SCC in 2007 which was successfully treated with Chemo and IMRT. Almost made it to 15 years exactly...........that would have been October, 2007, first declared NED.
So 15 years older and wiser perhaps, but 15 years older, nonetheless. So not sure what to expect. Due to radiation damage to my range of motion in my jaw standard TORS equipment is too large so they are investigating smaller equipment in the Tucson area. Just yesterday my Rad Oncol completed a review of my 2007 images and determined that I should be able to have radiation to just the right tonsil. So, that's encouraging. Meanwhile, have my Kevlar pants for sitting on pins and needles....................stay tuned..........and thanks again. JK
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Hello, I moved in July 2022 to Orlando and am trying to find a primary care doctor who is familiar with the long-term adverse effects of radiation. I had 70 grays in 2003 for base of tongue cancer and am now severely disabled by the long-term adverse effects of radiation. Another CSN member told me that you live in Florida and might be better able to point me to someone than he would be. I would appreciate any guidance. Thank you, Roy Rada, M.D., PhD.
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Hi royada,
Welcome to the H&N roll call. First off, since you are here (whether by mistake, accident or on purpose). I am going to enroll you as the newest member of the H&N roll call. Being a member does not come with many perks, but I like it and so should you. I will let you know more about it later.
For now, let me address your question. I think you just need to add your question to the daily questions on the forum, That might generate the interested you seek. I d know Skiffin16 well but, I hesitate to put you in direct contact with him without giving him a “heads up” first.
Let me know what you want me to do for you?
CivilMatt
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H CivilMatt, Thank you for considering me a member of the H&N Cancer group. I was treated for HNC in 2003 and the adverse effects of that treatment are slowly but relentlessly destroying my quality of life and have reduced my life expectancy to another 2 years. I am now 71 years old. Through some combination of messaging modalities (chat, private messages, and discussion board -- I prefer discussion board) supported by this website I've had feedback from a couple Floridians but none had a recommendation for a doctor within a couple hundred miles of me who might be interested in a patient in my situation. I don't recall whether Skiffin16 was one of those who commented. Thank you again for your thoughtfulness. Roy
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I indirectly responded to your suggestion of "I think you just need to add your question to the daily questions on the forum, That might generate the interested you seek" by implying that I have already recieved the null response from anyone who might be interested. I feel awkward to push my question about a caregiver in Orlando as seemingly no one is from Orlando who participates here. Also I don't know what you mean by the "Daily Questions on the Forum". I was under the impression that the Discussion Board was structured as topics with comments below a topic in an arbitrarily broad and deep hierarchy of comments. I don't see a topic called "Daily Questions". Twenty years ago my experience was that HNC groups are largely joined by people who have been treated for HNC within the past 3 years or have been newly diagnosed and not yet treated. I found that long-term adverse effects were of more interest in the childhood cancer, long-term survivor groups. All that having been said, let me raise the generality of my question with the hope that it seems less selfish on a new topic that I'll create. To post a topic, the site forces the poster to chose from a list. That list includes 'long-term effects of treatment'. Since that seemed particularly relevant to my topic, I put it there. Since you encouraged my posting, I thank you but apologize for not putting it in your HNC group.
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Hey Roy,
I live in Lakeland. My onco was/is MD Mulaparthi at Watson Clinic - Center for Cancer Research here in Lakeland. It's affiliated with Lee Moffitt in Tampa.
I don't know if she can address your specific needs or not, but she's awesome and very proactive.
Another key MD in my Dx and survival was/is MD. Jean, he's my ENT. But a very knowledgeable MD. He graduated John Hopkins and did his residency at a Harvard, or vise versa.
Both are still here, and I see both at least annually since being Dx by MD. Jean in January 2009.
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Thank you very much for the pointers. Since I'm new to Florida, I searched on Google Maps for your hospital and see it is 70 miles from my home in Winter Park.
I searched on Google for Shalini Mulaparthi. The first link was https://www.watsonclinic.com/physicians/shalini-mulaparthi.html which shows her educational credentials and her professional associations. Those credentials are more than good enough for me as far as such credentials go. Wanting to know more, I went to the next link https://health.usnews.com/doctors/shalini-mulaparthi-204275. That site shows statistical summaries of patient reviews which are positive. The site lists one publication which is from 2004 about refractory prostate cancer. I next went to nlm.nih.gov and got that same 2004 article. I'm not looking necessarily for a researcher but just trying to learn whatever I can. Allow me to ask you to please explain to me further how you evaluate your doctors. I gather both doctors you cited had also treated your cancer, is that right? That would, of course, create a special bond which a new patient such as me would not have.
Allow me to describe a special quirk of mine and ask how you think your doctors would respond to it. I prepare a 500-word document of relevant history and questions in preparation for every visit that I make to a caregiver. Some doctors read that carefully, answer all my questions, and thank me for the preparation. Some doctors prefer to look me in the eye, ask me questions, and ignore my document. How would you guess your 2 doctors would respond?
Now to Dr Serge Jean. Google first took me to https://www.watsonclinic.com/uploads/Jean_Brochure.pdf. He also seems extremely competent, but his specialty is described there as reconstructive surgery of the head and neck whereas I was basically radiated only and my problems are largely long-term radiation damage of the capillaries which kills most crucially the nervous system. Jean has positive patient reviews. US News gives him one publication which my search foundto be from his time at Harvard Medical School as a student and is on the subject of HPV transcription. Further search on PubMed found 393 results for a S Jean but most are not for our S Jean. For instance, a Sherrie Jean publishes on immunodeficiency from Tulane. I'll stop digging into this publication side of things.
I feel like a fish out of water where the water would be a healthcare system where I felt welcome. I was treated at Hopkins in 2003 and my ENT and oncologists retired within a couple years. My primary care doctor at Hopkins Dr Daniel Ford was wonderful for my entire time there 2003- 2020. I saw him about once every 4 months and he always read my notes, answered every question, made excellent referrals, and discovered problems that I did not know I had and got me a proper specialist to treat the problem he discovered. I miss him. Then my good fortune with primary doctors repeated itself in Denver when I became the patient of Dr Linda Overholser. She went beyond Dr Ford in her sensibility to my needs and doing whatever she could to help me. She was brutal with my prognosis, but I rather that then the typical prognosis of "every patient is unique, and no forecasts are reliable".
Thank you again for responding. Any further advice or discussion that you care to share, I welcome.
By the way, I still don't understand the CSN discussion site. I posted some comments on the discussion board. I later also joined a chat. The chat seemed to lead someone to send me a personal message. My preference is to use the discussion board where discussion can be shared with the group. However, I know of your feedback through an email that takes me to a place where I can comment on your feedback, but I don't succeed in finding your comment by searching on the discussion board unless I specifically go to a topic called "ROLL CALL 2022 - First Posting January 1, 2022". Is that a topic on the discussion board that is searchable and shared as typical discussion on the CSN discussion system, or is it somehow restricted?
Thank you,
Roy
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