HPV- SCC spread to lungs

Drivingdaisy

1200Sportster said:

HPV- SCC spread to lungs

Update 2-2021  I am sorry that I am not coming around as much as I should be. Started Pembro/Keytruda in August 2020.  Scans showed diminished and some gone nodules between October and November 2020. 

I have had some bleeding/ coughing blood intermittently since October 2020. The bleeding did not present a real problem (shortness of breath)  until the past 2 weeks.  Yesterday I had a bronchosopy cautery to stop bleeding in the airway. I came out of the procedure to see my ONC. She is trying to add Chemo next week.Carboplatin and Pacciltaxel.  I am reticent until I see the latest scan comparisons 2-22-21. I have not spoken to the pulmonary doc yet. I feel much better now that my airway is cleared up. What I would love to know is: What are we talking about in survival time with this chemo? I know it will not be pleaseant, and I don't know if I will be able to work while on it. If we are talking about extending life for 6 months on chemo, with crap quality of life, I would rather not even bother. I am not feeling too badly and everyday life is not a problem for me right now. Somethimes I think that the docs just ry to plug you into a regimen without regard to your personal experience. All thoughts welcomed. 

Hi 1200 Sportster

Be careful with the carboplatin, could just be Me but it causes a host of problems in My body.  Low sodium for life requiring downing huge salt pills which tore up my sensitive stomach also from drug but now bi- monthly Private IVs instead of having to be put in hospital since Chemo Dr not very nice since called him on not telling Me as it was going down but everything fine & wasnt, to give me the IV (Saline) in his Chemo IV area.  So now have to pay out of pocket to keep my sodium at a level that I don't have a seizure, go into coma possibly die or will, plus same time sodium blood work to ck number is in safe range, & kidneys OK unfortunately they used 1 arm for chemo & ruin that good vein & veins around it now other arm from hospital stays & private IVs other arms good vein scarring up hard to put in IV veins around the scared one roll on Nurses.  Stomach ruined, it caused a change in my saliva for life & it's been 5 yrs I produce what ENT Call Chemo Saliva.  It's thick, gooe, ropy, thick foul tasting saliva pure disgusting mucus & causes Chemo sores in moth so back on magic Mouthwash.  Let's not even start on Radiation over kill.  Like I said could just be Me but causing inflammation & yeast in stomach had thrush from it, low sodium horrible tasting mouth must rinse mouth 20 x a day trying to get horrible taste to go away even brushing doesn't do it.  Can't hardly eat a thing swallowing hard, no immunity but as My Dr said your alive but like told him but "not living".  Can't even go to a restaurant can't eat things off menu.   Look up side effects on Web Md, Mayo, or RX  before agreeing or taking.   Personally I should never have done a thing had The patch of tiny skin where left tonsil was taken out as a child for 3 yrs never grew, never bothered Me, could eat drink live life to fullest traveling Europe, No othe Drs were worried no lymph, no tumor just very tiny patch of skin.  Should have walked away & gone to big Center for second opinion.  We're in smaller West Coast town in Fl & the Drs pushed Me to start immediately their fear supposedly was 3 yrs I needed immediate treatments barbaric ones with no lymph, no tumor no reason to overdo radiation and fry me fro nose to collar bone over to each ear & damage all those organs. In between my thyroid no different than not havI got it can't regulate it correctly.  For Me it's been a very long 5 years of misery over HPV & No second opinion.  My eyes even affected along with hearing from 2 Chemo drugs Carboplatin & taxiol.  Both , let's just be honest all Chemo pure toxic and inflammation to your system.  They are so barbaric how they approach unless you go to big good Cancer Center not smaller ones in your town.  They just are clueless so use the same old treatments they've done for yrs.  and be comfortable with Dr & have them talk honest what's coming.  If hadn't found this forum I would have not made it through.  Was so clueless gave Me no time to digest & research they wanted the money get her before she goes elsewhere.  Had to get feeding tube went into ENT for allergies to be told got Cancer & We need to start immediatel.  I asked for "Quality of life Not Quanity" & got the reverse.  Been pure hell waking up daily.  Not asking as one member said for pity just a fair warning.  5 yrs of hell on earth.  Funny thing my PET Scan had 2 false positives base of tongue ENT really examined it and said don't see anything & base of lungs that had been there over 10 yrs and verified by old lung Dr as DX scar tissue, now have a body full of it.  Throat, ears , nose, can't even blow allergies out or sneeze so can't tell bad allergy day till too late & mucus in mouth flowing.   My saliva glands had scared shut at 1/ 2 yrs after finished treatments so good saliva was stuck and till a good ENT with correct instruments & training was found to open them guess Chemo had time to work on saliva backing up behind good.  The night after surgery was so happy had my saliva back by morning horrible taste say Dr & he said could open but didn't say what May come out.  Each yr gets thicker & thicker & harder to swallow. Pure toxic mucus.  Always before I try a prescription drug look up side effects odds are I will get them and now worse than ever before.  If I got lung or kidney it was found else where either cut it out NO Treatments or forget it I would rather be dead.   Always get all test results, if I had seen sodium lowering from high good level to going towards rock bottom, have been there, seizure & stroke 2 yrs after end of treatments & recovery, I would have questioned him than and refuse any more treatments.  I would have had some kind of better life than now!  Be careful with old treatments, are you going to good progressive up to date Cancer Center with Team of Drs discussing your case & how to proceEd.   New machines, photon therapy, Drs knowledged in HPV being new Virus & We know what that can do.  ive read that Harvard found usually HPV only needs 1/2 the treatments that reg Cancers do especially in throat.  Nice to know yrs after my treatments would have brought article in and put in front of Dr to read than walked out.  Had gut feeling when I saw the Rad Mach at other Center it was as old as the Center at least over 20 yrs, no way it's capable of targeting tho Radiologist said that was what he was giving Me nope just got blasted away with to much.   Waaaay to much.  Glad they had a class Action Lawsuit against that Company & they went out of business.  New company much better, new machine, team approach so now nobody else will have to suffer.  Found out My life came to $12.32 oh wow.   Both Centers didn't have a pain Dr Cancer Centers with No pain Drs or referrals.  Had to get 1 yourself in the midst of snowbird season with all the Seniors coming down for their 6 mo Season.  I can't even get a vaccine here yet our numbers high, so many Seniors, the rich can get them and Governor is alowing anything & everything no masks, no social distancin, go ahead have a motorcycle rally with a concert just did Super Bowl in TAmpa & if watched news people followed No rules set, but I'm only 63 with co-morbilities but not 65.  So many healthy 65 getting before Me sick with No immunity.       
They couldn't put Me on vent throat so sore & scarred narrow.  So now been in house or out on our back deck for over a year but healthy can't get 1, rich can get 1, Dr that just sees kidney patients mine in hospital has had his but not on front line.  Perfectly healthy & younger but I don't qualify not 65 & you know they die earlier what's 2 yrs & no immunity with a ton of problems would not survive Covid or new variants.  My husband going to be 66 & does all shopping, drug store runs, golfs, healthy as a horse and feels great.  Walks 4-5 miles each day I can barely make a block only 103 lb at 5'6".  Muscle gone.  Use to walk daily but can't now long thyroid disorder (fried) story can't.  Walked often 7-8 miles a day in Europe with Cancer.  Actually felt better with it than them getting rid of it.  This end of April will be 5 yrs but Chemo Dr won't test Me or see Me still mad I questioned him on why he allowed sodium to drop so low & never told me, sent me to a kidney Dr to help not make it life long problem that also can kill me.  Why I said ck out drugs, get second opinion even third but find Dr that not incompetent and non compassionat and acts like a child.  Won't see you thru to the 5 yr marker like I promised cause you questioned Me?  I'm god and know all who's the Dr here but I was a Rad student for 2 yrs in huge trauma Center in St Louis.  Never worked on a machine as old as one used on Me & that was over 20 yrs ago.  Just lied right to my face.  If gut tells you something not right turn & run, my opinion.  Good luck with any decision and May you live a misery free life.  Live and have Quality.  What life if not living!  Lisa

1200Sportster

HPV- SCC spread to lungs

month Good News for now. No Chemo. Lesions are slightly smaller. What is crazy is that Oncologist has set me up twice for chemo before all scam=ns were checked. So be mindful of that folks. I am glad I am conservative about getting on those. I had them before. Not awesome. I will talk to my RAD ONC next week to stratgize pallative zapping only if the cancer is messing with my airways. Airways are much better after bronchoscopy and cauterization. I really like the pulmonary doc. We can do that pallative procedure more if needed. My breathing is OK. One day/week/month at a time. 

wbcgaruss

Congrats On Some

Positive news. Chemo held off, lesions smaller, breathing good and appreciating life one day at a time-Best Wishes To You-Take Care-God Bless-Russ

1200Sportster

Well Here I am after a long absence. I was on a clinical trial from November 2021 FLX 475 and Pembro until 8-2022. Progression of disease has taken me off the trial. I am getting on a new one at Georgetown U hospital this week. It was a good run with few side effects. Regular Scans and visits every 3 weeks. Lived life normally. I was in for a routine bronchoscopy 9-23-22 and had cardiac arrest upon extubating. Getting over that now. My original oncologist told me that I could not get on a trial because I also have lymphoma. Well I am about to begin my second one this week. It is a pain but check around and don't take every doc's word as gospel. Peace to all.

wbcgaruss

1200 glad that you are checking in. It sounds like you are actively still fighting and not throwing in the towel. Sorry to hear of your cardiac arrest but it seems sometimes things surprise us when doing something unrelated. Glad you survived it with no damage. Best of luck with the new trial you are starting and I am certainly hoping this is the one that takes care of all your problems. And thanks for the reminder that when they tell you there isn't something available for you, go and look a little more for yourself. Below is a link about finding clinical trials--

https://www.cancer.net/research-and-advocacy/clinical-trials/finding-clinical-trial

and another--

https://www.clinicaltrials.gov/ct2/search/advanced?cond=&term=&cntry=&state=&city=&dist=

Wishing You the Best

Take Care God Bless-Russ