Charles
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Posts posted by Charles
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Kate7617.
One thing about this Durvalumab is it aint for everybody. We all have our realities on it and this can be attested to throughout the pages of this forum. Being on Durvalumab has put me in closer touch with 3 realities: Reality, Stark Reality, and Surreality. The first two ,"Reality" and "Stark Reality" are also evident on this forum and are used by some as the "drive" or "fight" to endure this side effect filled, perilous journey of Durvalumab because it does REEK, and that is putting it nicely. "Surreality" is what I use for my " Drive" to fight harder in this battle and I will illustrate here (with pictures) what I mean. In my past posts I have been known to use phrases like the beast, slay the beast, slay the dragon, and others with a seemingly militaristic fanaticism that could appear to be based in fantasy, insanity, or general kookism but I'd like to tell you this story because it did help me. Right about the time of infusion #5, I was feeling the exact same as you UGH! At around #7 or #8 I got a CT scan that showed remarkable shrinkage and progress so I posted the pictures on page 15 The top picture is of my tumor before treatment and the bottom one is of the tumor at the time of the cat. the before picture put me in closer touch with reality and stark reality but the bottom picture put me all up in surreality no matter how good the news really was. I taught myself how to read a ct/pet scan early because I seemingly like to see and measure PROGRESS and photograph for documentation the differences. Here's where the beast and dragon come in. I snapshot 3 angles - frontal, side, and from bottom up on my scans to determine the actual mass of my tumor and I use these three angles at their largest measurements to do this. The one on page 15 is the frontal at it's largest with measurements superimposed. The progress is evident by comparison but in the bottom image there is a ghastly image present. My tumor was a demonic face looking back at me from a side view, complete with pointed nose, eye, elongated head and a sinister toothy grin. Normally I wouldn't have been so shocked by this but the other two views I snap shotted , at their largest, also revealed non human images complete with said features all evil but different, and all aware of my presence and the fact I know they still exist. One's features "looks" surprised or startled, another looks jovial and aloof, and the one on page 15, well. go see for yourself. This propelled me into a "world" of Surreality which I have never known, knowing that my tumor could also be an evil 3 headed beast whose symbiotic nature and intent it is to end me. This is when I escalated the hatred for the "beast' mind body and soul and vowed that I would crawl up to death's door fighting and killing it .but by no means would walk through that door without the best fight I could possibly give. I am proud to say that the most recent PET/CT scans reveal what the Durvalumab and GOD is doing to these "beasts". The shapes somewhat remain but smaller but are mostly inflammation and scar tissue. The faces and the "smirks' gone. The beast is dying a horrible death and I am still being inundated with side effects at , which next infusion will be #18 and I will do the Durvalumab shuffle all the way into that infusion room and throw my stubborn veined hand up for a nurse to dig around in my flesh until blood registers and begin my next "Dragonslayer" if you will. If I get the opportunity to pinpoint "if it stops working" well that's another beast. I do hope I don't get executed for heresy by some secret or non secret society because of this post, or get comitted to my nearest state asylum. One of my favorite songs is by an 80's group named Triumph and they are from Canada, just their name invokes victory and so does their song "Fight the good fight" and here are some of the words Fight the good fight every moment, every minute everyday, Fight the good fight every moment, make it worth the price you pay. Every moment of your lifetime, every minute everyday, fight the good fight every moment, in your lovely way. AND DEATH TO THE BEAST!
- Tomm, Sillycat1957, DFK and 1 other
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Way to go Sillycat, and right here around Thanksgiving what a blessing.
- DFK and Sillycat1957
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Barb,
You're right about how durva makes one feel , makes me feel like crap in a bucket, seems like I'm either slowly floating toward the top or sinking rapidly to the bottom but it's like you said "I didn’t think I would see thanksgiving but here I am." and that about sums it up. Congrats on 14
- Barb1260, Rower Michelle and DFK
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DFK and Tomm,
already got me a couple pairs of dem dere sunglassees Arnie wore in Terminator 1 and it brings to mind two phrases, "I'll be bock" and "com wit me ip you want to lib". You guys are right, boring is good at this time but Tomm, boring you're not. You have busted off more legs in the big C's behind than a daddy long legs flying through a wood chipper, you take enough natural supplements to become "one" with the universe, seem to have your own "Guru" and drink chocolate beer. Boring? not to me. Eccentric? maybe, different? probably, outside-the-box? totally ,and you spare no expense in your endeavors, sounds like a good ally to have in a battle against a beast who attacks us on our own battlefields and has a cosmic degree in biology, but I must say that a plain ole, ICE COLD , SIX PACK of LONGNECKS would be ethereal about now, SLAY THE DRAGON!
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got results from Friday's pet/ct scan and number 16 in the veins today (Tuesday the 5th) and was quite surprised by the scan results, moderate shrinkage continues, uptake down from 6.3 to 4.7, plueral effusion and pericardial effusions have resolved, no hypermetabolic lymph nodes were identified anywhere, and no new pulmonary nodules identified, and no new or enlarging FDG-avid adenopathy throughout exam so improvement continues, and so does the Durva, CBD oil, and Sodium Bicarb breathing treatments and protocol mixtures. As far as side effects, they remain debilitating. Massive inflammation in lungs and back where they fired radiation but no pain or noticeable damage but no doubt quite a bit of scarring. More coughing, fatigue, and exascerbations but to me this is secondary to the real deal, the Cancer is still dying and I am not so onward we go toward number 17 and the complete destruction of the BEAST! hooorah!
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Barb, 10-4 0n the break from durva, had to take a few of those myself
Sillycat, you are smart and funny and I am glad you are in good spirits
I've been laying low and pixellating and listening to everybody else, scheming on how to get one or more steps ahead of the beast I have been on this site since page nine and have noticed similarities in some of our Durva journeys other than the infusions themselves. Infusions 2 and 8 seem to be recurring as noticeable Durva event occurences. My next one will be 16 (should be 21) and I am as grateful for prednisone and levothyroxine as I am Imfinzi FOR SURE! It seems from reading here that after #12 "things" begin to change or the stakes SEEM go up so to speak. I have noticed that my Onc's asst. gets all stuttery and appprehensive when I mention the numbers 12, and 15-24 but generally all after 12. I have "tested her waters" for deception and/or apprehensiveness to reveal the real deal and she has tested positive for both in an innocent type way, but she has become defensive of durva a time or two and I have had to remind her on a couple of occasions that it is OUR cancer, but it is my lungs, my thyroid, and my LIFE, being as nice as I could along the way. I rarely (after 12TH) get to see my actual onc anymore but he has been forthcoming and honest. Being on schedule doesn't seem to be too important to them until it's time for that money so I consider it in my best interest to let them know that if the durva stops working (to me, when shrinkage stops) at 15 or 16 then I might opt for a plan B before mets occurs if at all possible. I had to actually insist to get my pet/ct scan this friday (several weeks past 90 days on my last one) under the advice of the assistant "your insurance probably won't approve it", but they did, and in I'll go hoping and praying for the best, but goes to show that sometimes you have to advocate for yourself in the heat of some battles and this is a crucial time in my mind needing to know the size, location, and movement of the enemy, and if "our" strategy is still working or not. If the beast continues to shrink then Glory to God and you'll see me at the finish line, but if it doesn't and there are no mets after this scan, then Glory to God for allowing me to pinpoint WHEN would be the most opportune time to find a plan B and come off this crap and start recovering from something that I don't know if I'll ever recover from in the first place, before mets occurs. That is my goal at this point, continue till the last treatment if shrinkage continues then from there we'll go, no more shrinkage, no more Imfinzi, IF I GET THE CHANCE.....Hoping and praying for the best but being ever vigilant for the worse
- DFK and Sillycat1957
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Sillycat,
I had the same pains around the same time you are and the pain did not go away until I was put on cortico's at 20 mg per day for several days, I believe 3 days and the pain was gone and I stopped taking the roids on my own before 4 days so I didn't have to taper down and still continued treatments. 5mg of cortico's wouldn't have been enough to stop the pain in my side (underarm) or 10 mg for that matter. Chest pains are potentially dangerous side effects to this drug and they should be taking you a little more seriously when you tell them these things other than saying "could be this" or "could be that" or "we don't know". It is THEIR job to find out if it is the Durva that is causing your pain by applying corticosteroids to see if the pain stops. Sounds like you are in a precarious situation with over the counter pain medications since Tylenol and Ibuprophen really helped a lot for me on pain and inflammation. I am surprised your onc didnt delay your treatments for at least a week until they knew more about your pains or at least prescribe a higher dosage of corticos. So sorry you are in pain, I have just recently jumped on the cbd oil wagon, I read it can help with pain too but it can be expensive....
- Sillycat1957 and DFK
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RonH.
Very sorry about your results and the sadness and ineptitude you have seen in your journey , thoughts and prayers to you and please keep us posted if you can because you are still a durva trailblazer.
Finally received #13 tuesday and found out why they didn't have the Imfinzi last tuesday when I went. Seems the Fedex person delivering that days shipment of medications delivered it to the wrong place and the medications sat somewhere unrefrigerated for too long and had to be destroyed. Nothing new to report otherwise
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Barb,
Ct scans always depress me because other than the beast there are other things I am reminded, that are not going away in my case. and, words and phrases the radiologist uses to describe some things such as "noted changes' "new" anythings, "degenerative" this or thats anything 'plueral" "possible ongoing inflammation" Annuerisms and masses, I kindof know what LLoyd bridges charachter in the old funny movie Airplane meant by ' guess I picked the wrong day to quit sniffing glue", or drinking, or smoking pot and this is quite possibly the way I deal mentally with depressing situations as opposed to taking the ever increasingly popular "easy' way out, and I am going to be like Forrest Gump on that one and say " that's all I'll say about that"
Trying my best to think about comedic or hilarious thoughts occupies my mind so depression doesn't set in too deeply because I know the beast wants me to be scared, it wants me to worry so my body will secrete the enzymes and hormones or whatever it is necessary for it to grow and live while using my heart, brain, liver, kidneys, colon or whatever else as footstools while it kicks back and depletes and deceives my bodily resources into believing it is "one of the boys' AND I SAY NO WAY! wITH GOD'S help we are going to turn the tables on the beast around here and we are going to use all the what-ifs, kitchen sinks, plans b.c. and d or all the way to z to throw at it and using it's own decept against it if at all possible while on this ominous journey . -
BC JOE
That was just about the last thing I thought I would hear that day "yes we have no bananas (Imfinzi), we have no bananas (Imfinzi) today" reminded me of the gas wars we had here in the 80's. congrats on #8 (Ohhh that number 8)
Barb,
here is a link to nodules
https://oregon.providence.org › Files › Nodules Brochure 2014 FINAL
As far as the question "does this mean the imfinzi isn't working" I believe a good answer would be not necessarily. Nodules 5 mm in size are quite common and 95% are non malignant. A stable original tumor doesn't mean the drug isn't working. It is stable and not growing which is really on the positive side so keep your head up but they will need to know the uptake (if any) it could also be inflammation or an infection so hang in there.
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Hang in there Barb I'm rooting for you and all of us while we are on this crazy rollercoaster ride filled with prednisone, levothyroxine, antibiotics, and quite needfully, SEDATIVES . I am not a drinking man or doper but I can almost certainly garonmotee that I am just about ready to have me a few double shotters or a six pack of longnecks (ice cold) to ward off some of this anxiety and paranoid feelings of impending doom I know I subconciencely get from all this. Just went today for number 13 and was not able to receive the infusion because they didn't have any Durva due to some problem with Astra Zeneca so will take #13 next tuesday. That sure is a new one on me though. Praying for us all....
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Tomm
glad to hear your tsh coming down and your feeling better, levo working for you and me. My tsh down to 31 now and I have weaned off the prednisone (10 mg) and hopefully won't need it again but have them 'just in case" Now if this Hurricane coming at us in Florida turns north and goes back out to sea it will be a wonderful weekend!
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Ron
praying for a great pet scan for you where no biopsy will be necessary and #19 will be administered asap. My Onc has said the ones I've been delayed on (4) will also be made up after projected end date . Just got #12 today and feeling a lot better. It seems the guidelines vary where ever you go and are being treated, and what and how severe your symptoms are. Your PCP can also be invaluable for referring or scheduling "things" that are unscheduled that you feel are necessary that your Onc may not be too worried about, Hang in there man, my prayers are with you. .
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Tomm,
The bottom line, I have found is this : It is what you can stand and or how hard your onc is willing to work on your side effects before sending you to a specialist or pulling you off durva. I am a military veteran so tiredness and fatigue has never been a stranger to me and I have found that everybody's definition of the two vary with the definer's abilities. That being said, The endocrine (Thyroid) side effects and opthalmalogical ones are a little more rare than the fatigue and tiredness ones on durvalumab. At a prolonged tsh level of 59 I experienced muscular failure at minimal effort (chewing food or standing for short periods of time) experienced slurred and slow speech patterns , a weight gain of 30 pounds in one month, light sensitivity and visual blurring and changes in my eyes with swelling of the face and eyes, and felt like I was having a slow stroke, if you will, and was getting weaker and weaker day by day as well as doing a durvalumab "waddle" whenever I walked. I have been on prednisone since my 2nd infusion and have shown very good (I think) tumor shrinkage with no mets in spite of all the prednisone up to this point. I have quite a few bottles of different mg. of prednisone as well as a prednisone pack and a "just in case" 20mg. prescription that stays current as I said, just in case. My oncologist has all but let me write my own prescriptions for everything as he knows I want to kill this cancer and will crawl up to death's door to stay on Imfinzi. My Onc also has a good friend on the Pacific Coast Imfinzi trial team that has told him that they are prescribing ongoing prednisone of 10 mg. while staying on Imfinzi and they are having good results doing it. Truth is, Prednisone has helped me to stay on Durvalumab and I will continue 10mg. per day until no longer necessary Thanks be to GOD, radiation technology, Chemo, Sodium Bicarb, and prednisone. Results do vary though.....
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here is another link about the thyroid and immunotherapy
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here is a link about our "little freing" the thyroid
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Tomm,
WOW! 113 is still way high. I couldn't plan on getting behind the wheel of a car with my levels that high. My TSH has come down to 40 something and getting a little closer to normal but clearly still affects my overall abilities, strength and energy levels tremendously. Just had to up the replacement hormones to 75 mcg. per day before number 11 on Tuesday and evergy has improved a little but still has a ways to go. good luck and glad to hear you are improving.
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# 11 gone for me and all seems to be improving
DFK.
Sure hope your vocal chords are not damaged from radiation but I would gargle with warm salt water once or twice a day and maybe use hand signals to rest your voice for a while though, sure hate it when ole Onc says "could be" to anything. Shocked anyone would have to wait for so long for a specialist especially an enterologist (ENT?) How are your tsh levels and thyroid? may be a job for pcp to call for some type of imagery of your vocal chords to actually see damage or durva related issues, could be several things but wouldn't want them guessing or having to wait until November to find out , these are things I would do though.
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Well, so much for my reading comprehensive abilities, uh wait, doh!
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Ron,
Yeah I know about those long Amazon waits myself not being a prime member either but things usually arrive for me by and by though, If you have anymore questions just ask okeedoke? I wear a bipap machine myself and know that some medications also "aide" in wierd dreams. But being on hormone replacement therapy and my thyroid being out of whack I can say that the dreams of my "younger aspirations" if you will, nudge, nudge have made appearances from time to time.
DFK
so glad you enjoyed the "recipe" ( I sortof feel like one of the Baldwin sisters on the Waltons with their Recipe thing) The wife and I had the variation of it last night with the carrots, potatoes, and celery, it sure makes beef stew taste like Dinty moore's by comparison, Have you tried srirancha hot sauce instead of tabasco, texas pete, or louisiana? It has more of a sweeter, tomatoey flavor but is hotter than all those others and makes EVERYTHING taste soooooo much better
Later ya'll
Charles..................
Durvalumab
in IMMUNOTHERAPY
Posted
reality sir, REALITY.....