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Sillycat1957

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  1. Like
    Sillycat1957 got a reaction from DFK in Durvalumab   
    Tomm,  sorry I didn't respond about your blood pressure. I did however, read that article before. A gentlemen on the Inspire website posted quite awhile ago, about his father who had only 1 (one) infusion of Opdivo (Nivolumab) immunotherapy died because of an adverse reaction to his heart, he wasn't bad mouthing the drug, at all, he claimed he was an MD he just wanted people to be aware of the potential side effects of immunotherapy. I read it before I started Durvalumab, um, scared the crap out of me! I still don't like the fact that these drugs can cure us but kill or maim us later on down the road maybe Geez Louise! Huh! Oh and once when I had my vitals checked my BP was 155/90 I was so nervous I thought I was going to drop dead right then and there for sure! My BP has never gone higher than 130/80 ever! The nurse got so upset by the way I reacted LOL! He told me to relax take some deep breaths and some other things it finally came down after about 20 minutes. I did not want to have to take another pill. So far I've been ok. I hope your BP levels out.
    DFK, my Oncologist is sort of like the mad professor, she says I am in a curative state Yay! But she does consider Durva a maintenance drug. I say if it cures me of this monster I'm good!
    Here to fighting the good fight!
     
  2. Like
    Sillycat1957 reacted to DFK in Durvalumab   
    Thanks Tomm for info.
    I agree completely with the article and pushed my Oncologist (gently nudged) for a Cardiology consult upon completion of my chemo/radiation. I was aware of the risks to my heart with chemo and radiation and wanted to be evaluated by a Cardiologist while I was still in fairly good health. Durvalumab was not on my radar for cardiac adverse side effects.
    Per classic textbook, 3 months after chemo/radiation, due to radiation pnemonitis and scarring, I developed a rapid heart rate to compensate for my poor oxygenation. I was started on a small dose of Metoprolol, a beta blocker, while my body adjusted to the "new" me. And yes, with my rapid pulse, my BP was higher. All of that is resolved now, 9 months later. My Cardiologist says my heart is just fine and dandy but he sees me every 6 months. I feel secure in knowing should I have any future concerns, he has some history of what my treatments were and how I have been responding to them. 
    Thanks for sharing.....Take Care, DFK
     
  3. Like
    Sillycat1957 got a reaction from Tomm in Durvalumab   
    Hey Tomm,
    I had my 8th infusion on Monday, my Oncologist said I'm doing good. Most of her patients on Durvalumab have not been able to handle the treatment so, since I'm just getting it as a maintenance drug, we will continue as long as I am doing good. 
    She never says stable, I guess  because my tumor George is still there lurking at 9mm. My side effects are pretty stable now tho, thank goodness!
    Thanksgiving was nice 😃 But other than that life goes on Take care
  4. Like
    Sillycat1957 got a reaction from DFK in Durvalumab   
    Hey Tomm,
    I had my 8th infusion on Monday, my Oncologist said I'm doing good. Most of her patients on Durvalumab have not been able to handle the treatment so, since I'm just getting it as a maintenance drug, we will continue as long as I am doing good. 
    She never says stable, I guess  because my tumor George is still there lurking at 9mm. My side effects are pretty stable now tho, thank goodness!
    Thanksgiving was nice 😃 But other than that life goes on Take care
  5. Like
    Sillycat1957 reacted to D iane in Small Cell Diagnosis   
    Good morning.  We had a wonderful Thanksgiving and holiday weekend with friends and family.  
    Husband is doing pretty well.  He is eating good and he/we have figured out his abdominal pain is more from constipation than disease.  Once we took care of that he is feeling much better.  He has gained a couple of pounds back!  The heartburn has also resolved.
    Yesterday he had a port placed which went well. He also had an oncology appt. His labs are better than last week so 2nd cycle is scheduled to begin Monday.
    Some more good news.  No evidence of metastatic disease was found via brain MRI he had on Tuesday!!  👍
    Here's hoping all goes well with this round.  There's still going to be some trial and error involved, I just hope since we both understand a little more, it will help us stay ahead of any side effects.
  6. Like
    Sillycat1957 got a reaction from RonH in Durvalumab   
    Good evening all,
    Had my appt with my Neurologist yesterday and he is putting me on Gabapentin starting at 300mg to help with my neuropathy, and the nerve pain I have been experiencing. I say yay to that because I have been wanting to stop taking Oxycodone. I don't like the way it makes me feel. However, he did tell me it will make me drowsy at first, but I will adjust, I'm to increase 300mg per week til I'm at 900mg sounds like a lot! But he said I will be able to tell, because my brain is smart LOL!!! I thought that was the funniest thing I heard all day 😃 He's the best. I return in 2 months. Infusion #8 on Monday also see my Oncololgist, I have questions as usual....
    DFK.I am thrilled you have your voice back! Good luck on your upcoming scan results 😃
    I wish everyone a very HAPPY THANKSGIVING! 
  7. Like
    Sillycat1957 got a reaction from Tom Galli in Durvalumab   
    Good evening all,
    Had my appt with my Neurologist yesterday and he is putting me on Gabapentin starting at 300mg to help with my neuropathy, and the nerve pain I have been experiencing. I say yay to that because I have been wanting to stop taking Oxycodone. I don't like the way it makes me feel. However, he did tell me it will make me drowsy at first, but I will adjust, I'm to increase 300mg per week til I'm at 900mg sounds like a lot! But he said I will be able to tell, because my brain is smart LOL!!! I thought that was the funniest thing I heard all day 😃 He's the best. I return in 2 months. Infusion #8 on Monday also see my Oncololgist, I have questions as usual....
    DFK.I am thrilled you have your voice back! Good luck on your upcoming scan results 😃
    I wish everyone a very HAPPY THANKSGIVING! 
  8. Like
    Sillycat1957 got a reaction from DFK in Durvalumab   
    Good evening all,
    Had my appt with my Neurologist yesterday and he is putting me on Gabapentin starting at 300mg to help with my neuropathy, and the nerve pain I have been experiencing. I say yay to that because I have been wanting to stop taking Oxycodone. I don't like the way it makes me feel. However, he did tell me it will make me drowsy at first, but I will adjust, I'm to increase 300mg per week til I'm at 900mg sounds like a lot! But he said I will be able to tell, because my brain is smart LOL!!! I thought that was the funniest thing I heard all day 😃 He's the best. I return in 2 months. Infusion #8 on Monday also see my Oncololgist, I have questions as usual....
    DFK.I am thrilled you have your voice back! Good luck on your upcoming scan results 😃
    I wish everyone a very HAPPY THANKSGIVING! 
  9. Like
    Sillycat1957 got a reaction from Rower Michelle in Durvalumab   
    Good evening all,
    Had my appt with my Neurologist yesterday and he is putting me on Gabapentin starting at 300mg to help with my neuropathy, and the nerve pain I have been experiencing. I say yay to that because I have been wanting to stop taking Oxycodone. I don't like the way it makes me feel. However, he did tell me it will make me drowsy at first, but I will adjust, I'm to increase 300mg per week til I'm at 900mg sounds like a lot! But he said I will be able to tell, because my brain is smart LOL!!! I thought that was the funniest thing I heard all day 😃 He's the best. I return in 2 months. Infusion #8 on Monday also see my Oncololgist, I have questions as usual....
    DFK.I am thrilled you have your voice back! Good luck on your upcoming scan results 😃
    I wish everyone a very HAPPY THANKSGIVING! 
  10. Like
    Sillycat1957 reacted to DFK in Durvalumab   
    Good Wednesday to all.
    I am taking a page from Tomm's playbook, Infusion #23 completed yesterday....Uneventful past two weeks, boring with normal labs and no new challenges. YES!
    Great news on Vocal cord front.....after five days of not talking, I broke loose yesterday and I have my normal voice back. No squeaks, no pitchiness, no raspy breathy or Minnie Mouse voice. I can talk. I am a little hoarse (temporarily expected) from talking but it feels great to be able to communicate without miming or needing a writing tablet.
    Had CatScans today of chest and neck.....Oncologist said to e-mail him tomorrow for results or I can call him. My next appt is in 2 weeks and I told him I'll wait for the results then. For some odd reason, I just want the next two weeks to be drama free. If results are NED, fantastic, me knowing tomorrow or in two weeks won't change that. If there are concerns on my CatScans, I'd rather enjoy my Thanksgiving and find out later what the concerns may be. 
    Happy Gobble Gobble Day to all, 

     
     
     
  11. Like
    Sillycat1957 got a reaction from Opal in Durvalumab   
    DFK, as always
    You have such an eloquent way with words! Bet you can also bite a rattlesnakes head off an spit it in someones eye in a minute, too, if the situation calls for it huh lol! ❤️
    And yes Stage 3 seems to be the Elephant in the room of Lung Cancer doesn't it..... no one really has much to say about it, it's like a fluke, sorta hmmm we caught this in the middle of too late to be called early(stage 2) and too early to be called late (stage 4)! So normal Protocol if I understand my team of docs before Durvalumab, like you stated Kate7617 would have been CT scans every 3 months, then 6 months, until progression and or recurrence. Because being at this stage and we did NOT have any type of surgery. But new Protocol according to NCI is Durvalumab for 26 infusions or until progression or adverse/intolerable side effects.
    Like DFK says, my Oncology team says the same thing we are working towards "curative" at this stage of the game so I'm down with that 😃 I have to trust that I am more than just a guinea pig, I want to be on the side of one of the people that Durvalumab, did indeed do the job it was intended to do, so my mind is working on that so it can happen
    Night all, Roseann 
     
     
  12. Like
    Sillycat1957 got a reaction from DFK in Durvalumab   
    DFK, as always
    You have such an eloquent way with words! Bet you can also bite a rattlesnakes head off an spit it in someones eye in a minute, too, if the situation calls for it huh lol! ❤️
    And yes Stage 3 seems to be the Elephant in the room of Lung Cancer doesn't it..... no one really has much to say about it, it's like a fluke, sorta hmmm we caught this in the middle of too late to be called early(stage 2) and too early to be called late (stage 4)! So normal Protocol if I understand my team of docs before Durvalumab, like you stated Kate7617 would have been CT scans every 3 months, then 6 months, until progression and or recurrence. Because being at this stage and we did NOT have any type of surgery. But new Protocol according to NCI is Durvalumab for 26 infusions or until progression or adverse/intolerable side effects.
    Like DFK says, my Oncology team says the same thing we are working towards "curative" at this stage of the game so I'm down with that 😃 I have to trust that I am more than just a guinea pig, I want to be on the side of one of the people that Durvalumab, did indeed do the job it was intended to do, so my mind is working on that so it can happen
    Night all, Roseann 
     
     
  13. Like
    Sillycat1957 got a reaction from Barb1260 in Durvalumab   
    DFK, as always
    You have such an eloquent way with words! Bet you can also bite a rattlesnakes head off an spit it in someones eye in a minute, too, if the situation calls for it huh lol! ❤️
    And yes Stage 3 seems to be the Elephant in the room of Lung Cancer doesn't it..... no one really has much to say about it, it's like a fluke, sorta hmmm we caught this in the middle of too late to be called early(stage 2) and too early to be called late (stage 4)! So normal Protocol if I understand my team of docs before Durvalumab, like you stated Kate7617 would have been CT scans every 3 months, then 6 months, until progression and or recurrence. Because being at this stage and we did NOT have any type of surgery. But new Protocol according to NCI is Durvalumab for 26 infusions or until progression or adverse/intolerable side effects.
    Like DFK says, my Oncology team says the same thing we are working towards "curative" at this stage of the game so I'm down with that 😃 I have to trust that I am more than just a guinea pig, I want to be on the side of one of the people that Durvalumab, did indeed do the job it was intended to do, so my mind is working on that so it can happen
    Night all, Roseann 
     
     
  14. Sad
    Sillycat1957 reacted to Kate7617 in Durvalumab   
    Thanks to everyone for the input and for all the prayers! Going to a 2nd opinion, and going to ask about biomarkers and such. The Doctors that have been treating me act as if I am from another planet. Never been treated so poorly in my life! and then to put the icing on the cake, my NOW Dr wants to talk with my 2nd opinion Dr, Yikes!!!! and that's after my NOW Dr seems to find the only solution is to watch me carefully on CT scan every 3 months, WHAT?????? Really is that all there is to offer me? I sit here shaking my head, 400,000.000 $$ LATER, guess I can't get Durva so I get the boot. No more money, terrible to think that way, only I have good reason to believe that. God Bless us all and keep fighting for life! Kate7617
  15. Like
    Sillycat1957 got a reaction from RonH in Durvalumab   
    Charles,
    Reality, yep REALITY, it blows, thinking every 3 effin seconds some days, how my life is no longer mine ugh! Reality.... Courage it's here somewhere, just not today, my chest is hurting too much, it never did before? ugh! Reality...... they tell me at the cancer center if the pain is constant worry, if it comes and goes keep an eye on it it's most likely muscle ugh!
    Kate7617
    I so understand how you feel about the side effects of Durvalumab, it seems after each infusion I have a completely new whole set of different ones altho they are not as severe as yours are, Bless your heart ❤️ my being depressed and constantly stressed out heightened my pain level and for what it's worth the 5mg steroid as  much as I didn't want to take it nor believe that it would help me actually has, with my foot, leg, knee, elbows, and those muscle pains. However, my middle back C4 and C5 are getting worse that showed on my scan, my neck and now today this new pain in my chest, ugh! So yeah Durva sure does mess with ya! My Oncologist says the same there is nothing else for stage 3a or 3b. My scan showed definate reduction in the size of my tumor and suv uptake which proves the cancer is receding at this point. But like Charles says the REALITY is OMG! this stuff really hurts me, a lot! I'm sorry about the skin cancer too, is that from radiation or sun exposure? Did the doc say why or where that showed up? I just had infusion #7 I think the biggest thing is before my diagnosis I only took 2 medications daily for my 1 pill for Epilepsy, 1 for Migraines, they were not mood altering in any way, The only side effects were  weight loss because the Topamax caused loss of appetite, so I stayed nice and trim. 😃 making my diagnosis for nsclc longer to detect. Anyway my point being I don't like taking medicine my body rebels it seems! IDK that's why I think I get such severe reactions sometimes, I breezed thru some pretty harsh chemo drugs concurrent radiation Cisplatin/Etoposide, but my mind was made up then kill the beast, hardly any side effects! But the Durvalumab is different still trying to wrap my head around it, and it will be that way until my last infusion I reckon. LOL! I hope you make the decision that is right for you Kate, I would do some serious soul searching and praying on it. I have a prayer box my daughter gave me, but yiu can make a prayer bag or a box if you like:
    here are the instructions: You can use whatever Entity you believe in God, Buddha, Allah, you get my drift
    Prayer box or bag: get a small box write down on a piece of paper what ever is bothering you something that you can't deal with on your own, fold it up place it in the box while saying a simple prayer "God please take this! I can't handle it! You can I can't I think I will let You" Amen If you use a bag, when I did in the past I used a little paper bag and taped it to my refrigerator lol! And when I was asked what it was for i said none of your business! 😃
    Tom and DFK great wisdom there too!
    As always just suggestions and offers of some hope and encouragement
    Take care, keep fighting the fight
    Roseann
     
  16. Like
    Sillycat1957 reacted to DFK in Durvalumab   
    Tomm
    Great news.....keep up the boring. I too have had it pretty easy (comparatively) with minimum side effects and symptoms and am grateful. But I think if you were to ask my oncologist, he would vehemently disagree and might call me the biggest whiner he's ever met. Oh well, if the shoe fits......
    Sillycat1957
    Good words. I don't think you expressed a single thought that hasn't run through, or more accurately, torpedoed thru our minds. Tis what it is.
    I have a little Gratitude shelf at my bedside that is filled with miniature  knickknacks that some of my fav people and family have gifted to me thru the years. My 3 grandkids are represented by MY LITTLE PONIES (Their choosing); Princess Luna, Princess Celestia and Rainbow Dash and I have painted rocks and beach glass and crystals and agate stones and Mario Helicopter and Luigi Ice Flower, Three Stooges Minatures and more.... just a whole hodgepodge of fond silly memories of when these tokens were given to me. And every night, and every morning I look at my treasures and I say a prayer of gratitude for another beautiful and blessed day. I say thank you for all the love, prayers and blessings that I receive. It does lift my spirits and gives me strength to (as Tom would say) stay the course.
    Kate7617
    You are in my prayers......please reach out and let us know how you are doing and what course if any, you are taking. We all care. Look at the dialogue you provoked ❤️
    Take Care All, DFK
     
    P.S-Vocal Cord surgery went seamlessly smooth yesterday....thanks to my guardian angels, spiritual and human. Just taking care of this after 6 months of waiting and fretting and worrying  has lifted my spirits and actually lowered my stress levels considerably, which in turn has tamped down my chest pains, my throat pains and headaches.....Dear, dear, stress is a horrible victor.
    I am on 5 days of voice rest, absolutely no talking....WHAT!
    I will give a full report after my postop check as well as Neck and Chest CatScans to be done on 11/26/19 to check as to  why left laryngeal nerve was impinged. Progression is the worse case scenario, or could be a simple nodule, or maybe no determinable reason at all. For some strange reason, I am okay with it all. How apropro that Thanksgiving is right around the bend. I remain optimistic and thankful.
  17. Like
    Sillycat1957 reacted to Tomm in Durvalumab   
    I'm sorry to read about everyone's bad side effects. 
    infusion #16 yesterday. Still boring.  All blood work in normal range. No side effects, no weight gain. I take 1/2 gram of CBD oil at night (not from Hemp). I asked my OC if I should expect side effects as I get more infusions and he said they come around infusion 4-6 and then people get treated and their body starts to adjust.  Some people take Diazepam -Valium everyday to help with anxiety. 
    enjoy the season
  18. Like
    Sillycat1957 got a reaction from DFK in Durvalumab   
    Charles,
    Reality, yep REALITY, it blows, thinking every 3 effin seconds some days, how my life is no longer mine ugh! Reality.... Courage it's here somewhere, just not today, my chest is hurting too much, it never did before? ugh! Reality...... they tell me at the cancer center if the pain is constant worry, if it comes and goes keep an eye on it it's most likely muscle ugh!
    Kate7617
    I so understand how you feel about the side effects of Durvalumab, it seems after each infusion I have a completely new whole set of different ones altho they are not as severe as yours are, Bless your heart ❤️ my being depressed and constantly stressed out heightened my pain level and for what it's worth the 5mg steroid as  much as I didn't want to take it nor believe that it would help me actually has, with my foot, leg, knee, elbows, and those muscle pains. However, my middle back C4 and C5 are getting worse that showed on my scan, my neck and now today this new pain in my chest, ugh! So yeah Durva sure does mess with ya! My Oncologist says the same there is nothing else for stage 3a or 3b. My scan showed definate reduction in the size of my tumor and suv uptake which proves the cancer is receding at this point. But like Charles says the REALITY is OMG! this stuff really hurts me, a lot! I'm sorry about the skin cancer too, is that from radiation or sun exposure? Did the doc say why or where that showed up? I just had infusion #7 I think the biggest thing is before my diagnosis I only took 2 medications daily for my 1 pill for Epilepsy, 1 for Migraines, they were not mood altering in any way, The only side effects were  weight loss because the Topamax caused loss of appetite, so I stayed nice and trim. 😃 making my diagnosis for nsclc longer to detect. Anyway my point being I don't like taking medicine my body rebels it seems! IDK that's why I think I get such severe reactions sometimes, I breezed thru some pretty harsh chemo drugs concurrent radiation Cisplatin/Etoposide, but my mind was made up then kill the beast, hardly any side effects! But the Durvalumab is different still trying to wrap my head around it, and it will be that way until my last infusion I reckon. LOL! I hope you make the decision that is right for you Kate, I would do some serious soul searching and praying on it. I have a prayer box my daughter gave me, but yiu can make a prayer bag or a box if you like:
    here are the instructions: You can use whatever Entity you believe in God, Buddha, Allah, you get my drift
    Prayer box or bag: get a small box write down on a piece of paper what ever is bothering you something that you can't deal with on your own, fold it up place it in the box while saying a simple prayer "God please take this! I can't handle it! You can I can't I think I will let You" Amen If you use a bag, when I did in the past I used a little paper bag and taped it to my refrigerator lol! And when I was asked what it was for i said none of your business! 😃
    Tom and DFK great wisdom there too!
    As always just suggestions and offers of some hope and encouragement
    Take care, keep fighting the fight
    Roseann
     
  19. Like
    Sillycat1957 reacted to Tom Galli in Durvalumab   
    As a coda to this forthright and meaningful discussion of Durvalumab treatment and side effects, I am reminded of Dr. Phillip Berman's characterization of how life changes from normal person to a cancer person upon diagnosis: "When diagnosed with lung cancer, one goes from a participant in life to a frightened observer with no control and little hope."
    Any form of lung cancer and all treatment methods are indeed frightening. Looking back on my 3+ years of active treatment or my "un lived life", I now realize I was severely depressed. The medical system of that time did not test or assess for depression. I'm not sure today's system has improved. Bring the topic up at your next medical consultation. If normal life is too short for doom and gloom, what is life with lung cancer?
    Stay the course.
    Tom
  20. Like
    Sillycat1957 reacted to RonH in Durvalumab   
    Kate7617 - If you haven't had a biomarker test done, insist on it. I spent 10 months on Durvalumab (18 infusions) only to find out afterwards that I was PDL-1 Negative and EML-4 ALK+, so according to studies and all reports I've read, Durvalumab had little or no hope of working. I have since moved on to a Targeted Therapy, which by the way is no picnic either and in many ways, I am having more side effects with it than I did with Durvalumab. The only nice thing about that 10 month experience is that I became acquainted with some very nice and knowledgeable people here.
  21. Like
    Sillycat1957 reacted to Rower Michelle in Durvalumab   
    Hi Kate-
    Gosh, I’m so sorry to hear about the unrelenting Durva side effects.  To piggy back on the others perhaps there is a clinical trial available?  That’s where the GO2FOUNDATION can help find a match or Bridget’s recommendation for a second opinion might come in.  It’s worth pushing this issue over the just wait & see.  Keep us posted!  Hang in there.
    Michelle
  22. Like
    Sillycat1957 reacted to Charles in Durvalumab   
    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!
  23. Thanks
    Sillycat1957 reacted to DFK in Durvalumab   
    Yeah, exceptional great news Sillycat...I'll help you sing it from the mountaintops....oops, maybe after my vocal cord surgery! For now, heartfelt hugs of relief for awesome results. We're all bathing in your glorious attitude adjustment to gratitude.
     
    Take Care, DFK
  24. Thanks
    Sillycat1957 reacted to Charles in Durvalumab   
    Way to go Sillycat, and right here around Thanksgiving what a blessing.
  25. Like
    Sillycat1957 got a reaction from Charles in Durvalumab   
    Good morning all,
    I had infusion #7 yesterday all went well there, my stupid port was clogged again! They had to inject that clot buster stuff in it again! But before the nurse does that we do some  calisthenics: lit my hands over my head wave them around, stand up, turn my head side to side, sit down, lie down, arms over my head! Ugh!!! Nope Nada! In goes the buster then I have to wait an hour for it to work, then they can start the infusion. Good news my WBC is finally up to levels it should be.
    PET scan results are great: CT scan from 7/26/19 tumor(George is his name) was 1.2cm now 9mm Yee Haw!!! (My SUVmax from my orig scan on 3/5/19 was 15.1 tumor then was 2.1cm with right hilar node lit up) Which brought my staging to 3a after unrectable surgery. My SUVmax is now 2.2 shows no uptake nowhere other than the 9mm in the original tumor spot.
    So, I hope I worded that correctly. Moving forward, that adjusted my bad attutude, to an attitude of GRATITUDE! Is it the Durva working it? Or is the Radiation still at work? Heck I guess I really shouldn't care right, I just want the Durvalumab to stop making me feel like crap all the time! And my port to behave! I guess I want to be well and not tired and achy and whiney 😃
    DFK that injection sounds promising, wish you the best outcome with that, you'll be Christmas caroling in no time right?
    Barb, I guess you just gots to lots of walking and more walking, maybe some mall walking where it's warmer! 
    I will keep fighting the fight, one day at a time
    Roseann 😸
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