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Robert Macaulay

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  1. Like
    Robert Macaulay got a reaction from Deb W in Durvalumab   
    Hi Kleo
    The infusion took one hour and then the usual 15minute flush. I was in private clinic for the first time and the paper work and also the mixing  of the drug for the infusion as it does not come in bag that took about another hour and that looks like the norm in and out two hours. No other drugs or medication as far as i know. Felt bit tired this afternoon exactly 24 hours after the infusion other than that if Wednesday is good  with no side effects piece cake. They require I get blood work done and meet with doctor prior to each new infusion same as the last Chemo treatment, And I also have CT scan scheduled for October -29 and meet with the Oncologist November-8 That will tell the story if it is working or not.   The life of a cancer patient  Appointments.  lol
  2. Like
    Robert Macaulay got a reaction from LouT in Durvalumab   
    Kleo
    I meet with Oncologist  November- 8th to review the results and make a decision to continue or cancel this treatment I will have had five infusions prior to the scan on October-29. I like quick results one way or another.
    Bob
  3. Like
    Robert Macaulay got a reaction from LouT in Durvalumab   
    And the clinic I use is Bayshore just a coincidence I doubt it.  Just buy good laxative and your good to go.  lol
  4. Like
    Robert Macaulay got a reaction from JamesB in Need Advice about full strength Chemo   
    I asked the nurse while getting chemo what reason would they cancel my infusion, Her reply was your blood work that the doctor reviewed earlier in the day.I do get copy now of my blood work that was done today and I do review the results every two weeks after the tests prior to my infusion next week. 
    I put my trust in the doctors decisions with all my treatments.
    Bob
  5. Like
    Robert Macaulay got a reaction from sashjo in Durvalumab   
    Hi Kleo
    The infusion took one hour and then the usual 15minute flush. I was in private clinic for the first time and the paper work and also the mixing  of the drug for the infusion as it does not come in bag that took about another hour and that looks like the norm in and out two hours. No other drugs or medication as far as i know. Felt bit tired this afternoon exactly 24 hours after the infusion other than that if Wednesday is good  with no side effects piece cake. They require I get blood work done and meet with doctor prior to each new infusion same as the last Chemo treatment, And I also have CT scan scheduled for October -29 and meet with the Oncologist November-8 That will tell the story if it is working or not.   The life of a cancer patient  Appointments.  lol
  6. Like
    Robert Macaulay got a reaction from jack14 in Keytruda Itching and Rash   
    Patty L
    i have been using Derma -E itch Relief Lotion for over six months and for me works within minutes, i have never had rash just the itching and that seems to be now mostly gone just the odd time during the night. Never used anything else.
    Bob
  7. Like
    Robert Macaulay got a reaction from MatildaMel in Durvalumab   
    Barb
    This is intresting post today on thread i follow  be aware of side effects at any time during treatment.
    As I mentioned a while ago, I was taken off the Imfinzi due to nephritis....Creatine soared to 3.1... Kidney seriously inflamed; treated for 6 weeks with mega doses of steroids, starting at 80mg per day, down to 10 over about 6 weeks, and then finally none. I am happy to say that the kidney has recovered from its injury...but still oncologist here (CT - summer location) doesn't want me to have any more immunotherapy. The steroids have created all kinds of horrible side effect....dropped foot and now apparently either an ulcer or gastritis...(I have an endoscopy planned for Tuesday to see what's going on... at one point, the docs suspected I might be diabetic (from the roids), but that turned out not to be the case.... just pre-diabetic.... gotta watch that! 

    But in all of this.... the good news I am happy to report from the August 8 PET scan is that both lungs are clear. NED. So, the big picture, the big issue has a good story so far..... But none the less.... all my warrior buddies that are on Imfinzi.... keep an eye out for symptoms... my kidney issues had symptoms which I didn't recognize ---- upset stomach and almost complete loss of appetite. Good luck to all still on Imfinizi...I made it to 17 treatments, and clearly that has helped...that's two PET scans (over the past 6 months or so,) that have been NED. God bless you all and keep you safe.
    https://www.inspire.com/groups/american-lung-association-lung-cancer-survivors/discussion/duravalumab-imfinzi-patients-support-group/?page=last#replies
    Bob
  8. Like
    Robert Macaulay reacted to Steff in Keytruda, 1 year later   
    December 2019 update:
    Hi friends, my mom had her CT scan last week and we received the results on December 12th.  The wait was very nerve wracking for me this time.  I think it was due to my uncle recently passing away from some kind of cancer - they didn't have the opportunity to find out because he was gone within 3 weeks of seeing that his liver was filled with lesions.  So that was weighing heavy on our hearts when we went in to see the doc.  But all went well, she continues to be NED.  What makes me the most happy is that my mom has decided to stop saying that she has lung cancer and now calls herself a lung cancer survivor!  When she told her sister this, I teared up, it is wonderful to hear her say this after her 2.5 year battle with this recurrence.  Her next scan will be in 6 months this time.
    My mom continues to LIVE.  Yes she has lasting side effects from treatment, yes she has had to slow down, but now more than ever she is LIVING her life to the fullest.  She gets to bring my dad home from the adult family home a few times a week so they can spend quality time together (and so he can eat decent food, he says).  During the days she is not with my dad, she has been spending time with wonderful ladies who are constantly on the go, attending hockey games and other social events.  She is also now urging my aunt to get out and have fun after my uncle's death.  And of course, she is crafting...doing all of the she loves.  She is looking forward to the future without trepidation and focuses on having FUN!  We attended a Kenny G concert in our home town, which was surprisingly phenomenal and I have bought tickets for her and I to go to the Margaritaville musical coming next month (shh, don't tell her it's her Christmas present!).  We are making lots of wonderful memories.
    Why do I share this with you? Because I want to show you that there is life after a lung cancer diagnosis, and even ongoing treatment.  Yes, my mom's life looks different now, lots has changed, not just with her health. But she continues to do the things she loves and has made new friends along the way.  For those who are feeling hopeless, I want to share that there is HOPE.  I felt hopeless too, but it all turned out okay.
    Take Care,
    Steff 
  9. Like
    Robert Macaulay reacted to DFK in Durvalumab   
    Good Wednesday Morning to all,
    #24 Infusion yesterday.....uneventful. Labs all normal. Usual annoying side effects present, tolerable and managed with my arsenal. My husband calls my arsenal of potions, my Felix the Cat bag.
    I had my Neck and Chest Cat Scans two weeks ago. These scan were ordered to rule out any new or existing tumors that may have impinged on my left laryngeal nerve to cause my left vocal cord paralysis. I specifically relayed to my Oncologist and ENT docs that I did NOT want to know the results until my regularly scheduled appt., which was yesterday. I really really wanted to enjoy my Thanksgiving without my "Cancer" taking front and center stage should there be progression. My last chest scan was in May, 7 months ago.
    Results:
    Chest: Original Tumor no longer seen, Nodular parenchymal disease has resolved. No gross lesions are identified and no lymphadenopathy by size criteria. 
    Neck: No masses or lesions. Vocal cord paralysis could be due to radiation therapy within the chest for patients known right lung neoplasm and subcarinal lymphadenopathy.
    In Blessed simple terms: NED. 
    Relief, joy, ecstatic gratitude does not even begin to describe how I felt sitting there in my doctors examining room, where as five minutes before, I braced myself for the worse news ever. Instead, I got the best news in this stage of the game, at the nearing end of my Durvalumab.
    I inquired as to the possibility of deferring my #25 infusion until January, with the rationale of celebrating the remainder of December without any treatments. My oncologist said YES I MAY. Tears of joy streamed down my face as I hugged this very pragmatic man. I got just a wee bit of a smile from him.
    Plan is to have my last two infusions in January, followed by a PETSCAN a month after my last infusion. I also dovetailed Cardiologist, Pulmonologist, Radiation Oncologist appts and Echocardiogram of my heart on the day of #26 Infusion. I followup with my ENT in 6 months. 
    Oncologist said my port may be scheduled for removal pending the results of the PETSCAN.
    And that my dear friends is in a nut shell, my reachable and foreseeable future, the light at the end of the tunnel, a sanguine postscript to the past 16 months.
    History: Dx August 2018 NSCLC Stg 3b. Carboplatin/premetrexed x3 concurrent with 60 Gy radiation x30 over 6 weeks. Durvalumab initiated 2 weeks after last chemo.
    Thank YOU all for your support.
    Take Care, DFK
  10. Like
    Robert Macaulay got a reaction from PaulaC in Another newbie ... Still a bit in shock   
    MarieE
    The key in this situation is to stay hydrated and as long as he can get water down the rest will follow.
     
    Bob
  11. Like
    Robert Macaulay got a reaction from MarieE in Another newbie ... Still a bit in shock   
    MarieE
    If the water and couple tylenol for couple hours do not help, and temp starts up to 100F OR 38C time to see a doc.
  12. Like
    Robert Macaulay got a reaction from MarieE in Another newbie ... Still a bit in shock   
    MarieE
    The key in this situation is to stay hydrated and as long as he can get water down the rest will follow.
     
    Bob
  13. Thanks
    Robert Macaulay reacted to MarieE in Another newbie ... Still a bit in shock   
    Talked to the on call doctor and he said not to worry until it's at least 101. He prescribed Zofran and another drug to try for the nausea, and my husband just took one of the Zofran pills so fingers are crossed that it helps. The doctor said that the other drug is a bit more sedating so hopefully that will help with sleeping overnight. I took his temperature again when I got home from the pharmacy and it's 98.8 so that's good.
  14. Sad
    Robert Macaulay reacted to MarieE in Another newbie ... Still a bit in shock   
    Just took it again and it’s 99.9. 🙁
  15. Like
    Robert Macaulay reacted to PaulaC in Weekend Wisdom: Scanxiety   
    Brain MRI clear! NED next scan 3 months.
  16. Like
    Robert Macaulay reacted to Folio in Folio   
    Thankyou for your lovely reply. I will post again on tuesday after seeing oncologist . You have already made me feel better 
    Carol 
  17. Like
    Robert Macaulay got a reaction from DFK in Durvalumab   
    Hi Everyone
    Just quick update met with both docs yesterday and this afternoon and from my CT last week radiation is off the table as he said it would do more damage than it would do good as i have had two previous doses.There is still progression from the last scan in August to the one last week.So the new treatment starting later this month will Carboplatin and Gemcitabine on separate daysevery three week for four cycles, Then as usual the Ct scan.Glad to be back (OUCH) In the treatment cycle although she did give me some strong warnings on the Gemcitabine side effects  as  blood transfusion is possible  if Anemia gets bad. 
    Treatment #3 here i come😎
    Bob
  18. Like
    Robert Macaulay reacted to Sillycat1957 in Durvalumab   
    Hi Bob,
    Glad to see your update on treatment plans. First off I am no Dr. I only share my experience with these drugs we get put on. My first line of treat was an aggressive mix of Cisplatin/Etoposide mix, the Cisplatin is also a cytoxix chemo drug, like Gemcitabine, it knocked the hell out of me as far as being fatigued and nauseous for the first week, I helped that by taking Zofran and eating my meals like 4 to 5 times a day, freakin pain in the butt yep, but at least it stopped the pukie feeling, and if I was tired oh well nite nite lol!  My daughter says Chemo gave me narcoplepsy 🤣 There was a point when my Onc was going to switch me to Carboplatin instead of Cisplatin since it's milder, my ears were starting to be affected but I wanted to stay with my original cocktail. That has since resolved on it's own Yay! Oh, and yeah, I have hand and feet tingling which I have an ongoing debate with my Oncologist is it from Chemotherpy or the Durvalumab, which BTW I have more side effects from than the concurrent chemo/radiation go figure! I wish you the best as you move forward in your new line of treatment, for me every time I sat in my chair getting an infusion of Cisplatin, knowing how powerful it was, I let my mind put it to work for my body "Saying now seek and destroy" I know I'm a  weirdo! but it got me thru, whatever gets us thru our dark places, and every radiation treatment "I sang I'm walking on Sunshine" even tho I was laying on a table lol! So as I said I wish you well, keep fighting the fight 😃
     
  19. Like
    Robert Macaulay reacted to DFK in Durvalumab   
    Thank you Bob for your update and info on your new treatment plan. I joined this forum just as you were completing your 26 infusions so I know that your road since has been unexpected, long and challenging. I wish you strength and peace and minimal controlled side effects as you navigate your new treatment plan.
    Also, I cannot echo Tom enough....I will be praying for results, praying for results, praying for results. 
    Hang tight, take care, DFK
  20. Like
    Robert Macaulay reacted to Tom Galli in Durvalumab   
    Bob,
    Ouch! I was really hoping precision radiation would do the trick.
    I've had lots of Carboplatin but never Gemcitabine.  Thankfully, you know the side effect drill.  Am praying for results.
    Stay the course.
    Tom
  21. Like
    Robert Macaulay reacted to Rower Michelle in Durvalumab   
    Hi Bob,
    Well if there’s anyone who can handle this new treatment plan, it’s you.  All the best heading into round three. We’re all going to be there for you.  Carry on. 
    Michelle
  22. Like
    Robert Macaulay got a reaction from Sillycat1957 in Durvalumab   
    Hi Everyone
    Just quick update met with both docs yesterday and this afternoon and from my CT last week radiation is off the table as he said it would do more damage than it would do good as i have had two previous doses.There is still progression from the last scan in August to the one last week.So the new treatment starting later this month will Carboplatin and Gemcitabine on separate daysevery three week for four cycles, Then as usual the Ct scan.Glad to be back (OUCH) In the treatment cycle although she did give me some strong warnings on the Gemcitabine side effects  as  blood transfusion is possible  if Anemia gets bad. 
    Treatment #3 here i come😎
    Bob
  23. Like
    Robert Macaulay reacted to PaulaC in Weekend Wisdom: Scanxiety   
    I’m with Tom, I just try not to stress eat!
    brain MRI tomorrow and trying to stay positive. 🙏🙏🙏
  24. Like
    Robert Macaulay reacted to DFK in Durvalumab   
    Good Wednesday to everyone
    #22 Infusion is history. Blessedly uneventful, All labs remain within normal parameters. I have been fortunate
    As I wind down with just 4 more infusions, I'd thought I give a run down of my personal experiences and side effects for the new initiates who may find themselves on Durvalumab and are learning from our forum. I've only included symptoms that were never present prior to my NSCLC and initiation of Durvalumab.
    Itchies-Broke out in a rash to my back about 6 months in. The rash quickly resolved but my itchiness to my back remains. I've had good luck in treating it with Hydrocortisone 2.5% cream and an antihistamine as needed.
    Pneumonitis- Diagnosed about 4 months in. From radiation therapy. Had to skip/postpone two doses of Durvalumab and was treated with Prednisone. Durvalumab was resumed, pneumonitis resolved and my pulmonary function tests improved and remain normal. I will be getting all 26 doses of Durvalumab.
    Generalized Aches and Pains primarily to my back and thoracic area- Very disconcerting as my chest muscles ache, my ribs ache, my lower back aches. Was told this is due to post chemo/radiation and Durvalumab. Tylenol works but if the pain really hobbles me, Motrin is my go to pain relief. Got my medical marijuana card and purchased some THC/CBD tincture......didn't work for me. Maybe I didn't titrate dosing properly but I just got really stoned and loopy and my pain was still present. 
    Joint Pain and Joint Muscle stiffness- I've really noticed an "awareness" of finger, toes, ankle and knee pain about 8 months in to my infusions. To be fair, I've had a few tumbles where I have hurt myself but the healing has been delayed and joint pain more pronounced. Again, Motrin seems to help. Had a fall from my bike couple weeks ago. I called it a soft landing since the bike just got out from under me in a mud bog. I've never bruised so extensively. Fortunately, the bruising was the worst of it and my injuries were minor. 
    Headaches- I mention this because I rarely suffered from headaches prior to Durvalumab infusions. Currently, it's a rare day if I don't have a headache for an hour or two. I do not treat with medications since it abates by itself. 
    Skin changes-  My skin bruises easier and little cuts and wounds take a lot longer to heal. My skin texture seems more fragile and my skin is definitely a lot drier. 
    Weight Gain- Been a skinny whinny all my life so a 25lb weight gain is significant. My appetite has increased so I've had to pump up my physical activities which has been challenging since...
    Faitgue- Has plagued me from chemo/radiation to today. Unrelenting presence, I do the best I can do by maintaining my physical activities and pacing my responsibilities.
    Peripheral Edema to ankles, shins and fingers- After months of watching my ankles swell, I finally obtained some Lasix to use on an as needed basis. I had my wedding ring resized prior to my diagnosis so I am absolutely positive that my fingers were swelling and it was not weight gain. Fortunately, the swelling in my fingers subsided and I haven't had and ankle swelling since I obtained my Lasix Rx. 
    I have been fortunate and have dodged the more serious side effects.
    Update on voice hoarseness and ENT appointment- Official diagnosis; Left vocal cord paralysis. Most likely caused by lung tumor impinging on my laryngeal nerve. Though, and here's the rub, usually if tumor is on the right, right vocal cord nerve affected and vice versa, if tumor on the left, left vocal cord affected. Well, I had to be different as my tumor was in my right lower lobe but my left vocal cord is paralyzed. I did have subcarinal lymph node involvement and that may explain why my left vocal cord is affected BUT, to be on the safe side, my ENT MD and Oncologist are now in discussions about either a Pet Scan or Cat Scan to rule out any progression in my left lung. 
    In the mean time, I am scheduled for surgery next week Thurs to mediate my vocal cord paralysis and hopefully, allow me to get my voice back. 
    Abdominal Ultrasound to rule out ascites- Results from yesterday pending. I will see my PCP next Tuesday and all my tests and "to do's" should come together before my surgery. 
    What a journey huh.....one day you're skipping along fine and then BAM, you're slammed and get warped into this medical world of tests, procedures, adverse events, side effects and advocating for your own well being, for your LIFE.  My son is a Navy SEAL and he told me I got this, that it was my fortitude and dealing with adversity that allowed him to be the man he is today. Nice words when your world is falling apart, and you sometimes feel overwhelmed, defeated and just plain tired.
    So to all my peers on this journey, hang tough, advocate and carry on. We can do this. We are doing this.
    Take Care all, DFK
  25. Like
    Robert Macaulay reacted to Eagle13 in Durvalumab   
    Hi Tomm,
    I’ve been off of Durva for about 16 months. I still have MRI and PET scans every 3 months while taking a Tagrisso pill everyday.  There are side effects from the Tagrisso but, I am managing them. I’m pretty much able to do things I could do before being diagnosed in Jan 2018.  I pray that the Tagrisso will keep working for a long time.
    Thanks for asking!
    Take care,
    🦅
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