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Robert Macaulay

Durvalumab

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#15 infusion yesterday, all blood work in normal range  & TSH 3.71.  No side effects, no weight gain, no fatigue, no other health issues no other medications except levothyroxine 150 mcg. 

 I take 12 natural supplement and 1/2 gram CBD (not from hemp). Doctor says I'm boring. I read that no alcohol was allowed with Durva  but this week the Doc says I can have a beer but don't drink enough to have a hangover. He said alcohol will not interfere with Durva,  I'm getting a chocolate beer this week. Anyone else told it's OK to have a beer? 

A big Thank You to those that post here to show us what can happen and how to deal with it. It would be nice if people that read this and are on Durva share their journey with others, it will help others.

enjoy the season

 

 

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1 hour ago, Tomm said:

....... I'm getting a chocolate beer this week. Anyone else told it's OK to have a beer? 

A big Thank You to those that post here to show us what can happen and how to deal with it. It would be nice if people that read this and are on Durva share their journey with others, it will help others.

enjoy the season

 

 

When I was on Durva they told me alcohol was okay. Like your Onc said, moderation.  If you like chocolate beer I have a couple recommendations

”Sweet Baby Jesus Peanut Butter Chocolate Stout” - DuClaw brewing

or

Samuel Smith’s “Organic Chocolate Stout”

 

cheers 🍻

🦅

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Tomm-Boring is good, very good.  Happy to read as such that it's as smooth sailing as can be expected for you and that your thyroid is behaving.

I took it upon myself to have a couple gin and tonics when friends were visiting......liver labs a week later were within normal parameters and haven't had any issues since. What a conundrum, initiating and executing health choices that will maximize my well being then, for me at least, sneaking in a few cocktails as I throw abandon to the wind. Felt so guilty, I deferred on further alcohol until I can get thru this year of infusions. And no, I did not confer with my MD, but knew that alcohol is not entirely contraindicated, just not a good choice for a body that's already being taxed.

My voice hoarseness or permanent laryngitis will finally be addressed this coming Tuesday. Waited three months for this ENT appt. Dysphonia ( difficultly speaking that can be caused by a physical disorder of the vocal chords, mouth, tongue or throat) , is one of those rare Durvalumab side effects. Just a general term for my ”affliction" but I'm anxiously awaiting for a definitive diagnosis and hopefully treatment so I don't sound so hoarse or sound like Minnie Mouse when straining my voice. 

Take care all, thanks Tomm for the update.

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Hi all! both those beers sound gross! Sorry, I haven't drank in over 21 years, I can't, 1 is too many and 1,000 is not enough! Lol! I have another disease 😫 oh well, but y'all go ahead and enjoy. Even if I was a drinker I'd have to say no to flavored beer ugh!

I had infusion #6 this week, blood work ok, nothing new in the aches and pains department. So all's good here 👍. Oncologist fixin me up for a PET scan waiting for radiology to call with appointment. Also I have my appointment on Monday with my PCP he keeps a close eye on my overall health. Any concerns I have he gets them looked at. Neurologist end of month also.

Enjoy the weekend, keep fighting the fight 

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Eagle 13, DKF, Sillycat  ... thanks for the feedback on having a beer

Eagle ... hope things are going well for you ... I'd like to read an update on your progress after getting off the Durva journey

DKF  .. I hope you get some positive results and a treatment plan from your many upcoming tests.

Sillycat .. I'm what I call a dry alcoholic and have not had a drink for 5 years, but I want one. My ONC said go for it and I follow doctors orders. I hope you get good results on your Pet

Charles ..It sounds like good news to me,  keep up the positive attitude and get some sunglasses, your future looks bright.

Barb.. I hope your time off has been healing for mind and body

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Hi Tomm. For some reason my response to your post disappeared. I agree boring is good. The break was nice but I’m nervous to start over. I’ve forgotten how I felt and hope the next half of this isn’t worse. Glad you’re doing well. I need a 🍺 

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Tomm-HA, HA, HA, HA, HA.....Love the "future's so bright, you gotta wear shades". We all need some belly laughs. Charles, go get dem dere sunglasses.

Barb, keep the faith, and I too hold good wishes that your next half will be uneventful and boring like Tomm has reported.

As a side note, got Lasix to use on an as needed basis for feet swelling......well, well, what do you know? The minute I got the script in hand....2 weeks now......no occurrence of swelling to lower extremities, no need for Lasix. Which is so bewildering as I had been experiencing weight gain and swelling for a couple of months before I requested the Lasix......just another anecdote. 

Lovely weekend to all.....take care everyone. DFK

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1 hour ago, Tomm said:

Eagle 13, DKF, Sillycat  ... thanks for the feedback on having a beer

Eagle ... hope things are going well for you ... I'd like to read an update on your progress after getting off the Durva journey

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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20 hours ago, Sillycat1957 said:

Hi all! both those beers sound gross! Sorry, I haven't drank in over 21 years, I can't, 1 is too many and 1,000 is not enough! Lol! I have another disease 😫 oh well, but y'all go ahead and enjoy. Even if I was a drinker I'd have to say no to flavored beer ugh!

I had infusion #6 this week, blood work ok, nothing new in the aches and pains department. So all's good here 👍. Oncologist fixin me up for a PET scan waiting for radiology to call with appointment. Also I have my appointment on Monday with my PCP he keeps a close eye on my overall health. Any concerns I have he gets them looked at. Neurologist end of month also.

Enjoy the weekend, keep fighting the fight 

20 years here. ODAAT. 

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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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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

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Our prayers are with you next week as you head into surgery. You know in all those years in healthcare I saw a lot of posts on LinkedIn (most of them pointless) however one of them seems to stand out: the road to success is never a straight line. It’s fraught with unexpected twists, turns, ups, downs and just plain curve balls that can throw anyone off course.  The difference to achieving the goal is perseverance in the face of uncertainty & adversity.  That sounds pretty much what we’re all doing here every day.   Unlike our working lives, lung cancer doesn’t get to go on vacation, so we have to keep going forward.   

I hope you have a speedy recovery.  
Michelle
 

 

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Michelle,

Thank you for your kind thoughts and motivational words......we all can use a little cuddling. My scheduled surgery for vocal chord “plasty” should be a simple same day procedure. My doc said I'll be singing Christmas Carols for my community performances this Holiday season. Now that’s a goal I can live with. No Ave Maria for me but I can do a mean Winter Wonderland.

Take Care all, DFK

 

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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

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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

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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

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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

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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 😃

 

Edited by Sillycat1957
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Hi fellow Durvas. I’m back on track with #14 yesterday after my little break. Forgot how crappy this stuff made me feel. Still have the aches and pains like pleuritis but not as bad. Back to the pulmonologist on Monday. Oncologist said keep going the way it is.  Me and the PA both think some of this is radiation damage to muscles and nerves-now have a numb spot under my arm that was in the line of fire. Only 12 more to go so I’m now descending the mountain. Hey a year ago come 12/7 I didn’t think I would see thanksgiving but here I am. 

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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

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Hello DFK, 

I was also been diagnosed with Left vocal cord paralysis/dysphonia after my left upper lobectomy back in Sept.  I believe from the surgery report that it is from the thoracic surgeon removing a suspicious lymph node that was very close next to the left laryngeal nerve.  I wanted to know what they are going to do in the surgery exactly that will fix it?  Also do you have a night and day dry throat from the paralysis?  I really have no one that i can discuss this issue with so please forgive me but my vocal cord paralysis/nerve is very painful and constant.  I was prescribed gabapentin every night just so I can try to get some sleep.  My ENT DR and Oncologist are just saying that after chemo they will try to fix this issue but i'm not sure how... 

Thanks Darla

 

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Hi Darla,

How frightening it must be for you to be uninformed about your options. I can give you a full detailed report next Tuesday after my ENT pre-op appt. But here is what I can tell you that I learned so far. I will discuss specific options with my surgeon on my Tuesday appt. and share more with you.

You need functioning vocal cords to speak, swallow effectively and cough. I had been reporting my Minnie Mouse voice for months with a loss of volume and pitch to my oncologist. I finally got a referral for ENT after 3 months of symptoms and waited another three months to see the ENT.

I don't know what option I will chose but your paralyzed vocal cord needs to touch and meet your functioning vocal cord to be effective so here are the two options that were briefly explained to me.

1) Bulk filler. In layman’s terms, they will inject my paralyzed vocal cord with a filler to move it closer to my functioning right vocal cord. This is not a permanent fix but can hold up for up to 3 years.....I will get more details later.

2) Implant. Surgically implant a "structure" to move the paralyzed vocal cord closer to the working vocal cord. This can be a permanent fix.

3) Both procedures are done under General anesthesia so you will need pro-op clearance which is all the hoops I am now jumping thru.

I have experienced a burning sore throat sensation on both sides of my throat for months. It may be on my right side then it may be on my left side. I just chalked it up to life in the cancer lane....another pain I just have to live with.....been gargling with salt water and baking soda.....if anything to psychologically feel like I'm doing something worthwhile by decreasing oral bacteria count and soothing my throat.

I've been using Manuka Honey as recommended by one of my fellow Durva's when there was a question with the integrity of my esophagus. Well, my esophagus was just fine but I do find it soothing to take a teaspoon if my throat hurts. 

Also, just a side note, your vocal cords close when you are swallowing your food. When one is paralyzed, there may be an opening and  there may be a problem with aspiration of food/liquid to your lungs. I noticed that I had terrible coughing spasms at times so I purposefully would eat slower and not stuff my mouth with so much food, and swallow slowly.

Also, if you need to cough up phlegm or clear your throat, your cough may not be as effective and you may strain your vocal cords if coughing violently. I say this not to scare you but to know what to report to your healthcare team if your are having problems. We are already up to our eyeballs with treatments and stress and if another side effect or problem can be averted, let’s do it. 

You're wise to reach out and I will give you more information when I get it, and if you have any other questions....ask away.

Take Care, DFK

 

 

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DFK,

Well, I sure wish you well with your ENT visit, and get to fixin your vocal cords Minnie can get to be a little irritating lol! (Sorry) my sometimes Minnie voice is still lingering from radiation I'm told hardly there at all anymore, thank goodness, big fan of cinnamon drops.

DarlaK,

Welcome to the Durva club, and hope you get to feeling better 😃

Barb,

Welcome back to the Durva infusion train! 

Charles,

Like you and Barb said,  yes I am grateful to be alive but I so, so, hate this drug and what it does to me! I need a serious attitude adjustment here 😣 takes 6-8 days to recover and feel somewhat normal after my infusion. fatigue is the worse along with back and shoulder pain.

I had my Pet/CT scan yesterday, my results are still not available online yet. Ugh! Scanxiety setting in, my infusion and oncology appt is Monday. Time to busy my mind with some Netflix and Yoga, meditation and snacks etc....

Have a great weekend!

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