Sillycat1957

Whoo Hoo! Way to go! BC Joe 😃 
 
 

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!

Death to the beast!  Onward.  Side effects suck. So sorry about that, keep fighting! 

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 🍻
🦅

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.

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

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 🍺 

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

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 

Good to hear from you Charles! and thank you ! I did have a 2 week break from treatment and pretty much all of my pain went away, so yes it is from the Durva 😃 however, a lot of my chest pain is stress related as I am dealing with a lot of personal and financial issues along with this nasty cancer beast =( but I have a pill for that too haha! I just have to pick my battles with care these days.  Actually, today I see my counselor and physically I really feel not bad 😃 so I'm hoping for a good day!
I have heard some good things about the CBD oils, I'm a light weight, everything pretty much knocks me flat out hahaha! My Neurologist has told me NO! to both Medicinal Marijuana and CBD oil on my last visit in June. I have Petit Mal seizures sometimes lasting up to 5 minutes and he said he doesn't want me wandering around high as a kite in a fog looking for a cookie that isn't there lol!   So for now I think I will try more meditation to help with the stress, keep close to the members of my family that are positive and relax and breathe 😃

Hi all!
I had my 5th Durvalumab infusion yesterday. Straight up 😃 Blood work first, all ok. Seen APRN this visit, Oncololgist next visit. Still have Oxycodone 5g for pain if needed, I take one tablet before bedtime, I'm also still taking one 5mg prednisone daily for my muscle and joint pain. I still have the middle back pain along with the shoulder chest and underarm pain. I asked again why? APRN and Oncologist both do not know why, they feel it could still be from radiation Good grief man! Does it ever go away I asked, she said it takes a long time, last zapping was 7/1/19. I am allergic to Tylenol and dr doesn't want me taking NSAIDS, because of my epilepsy medicines that take a toll on my kidneys and liver, bleah! Funny thing is the steroid helps with the pain better than the pain med lol!  Otherwise I have no new side effects to report from my last infusion til now Yay! 
Barb: I'm glad you are getting a break, hoping it will help resolve some of your issues, you are always in my thoughts and prayers 😃
Take care all my Durva pals have a great evening 😃
 

Your too funny lol! Your posts always bring a smile to my face. I'm sorry you can no longer practice medicine, you were on to something there, didn't your doctor realize that lol! Have a peaceful evening 😃 Roseann

Kleo,
I read all your posts before starting Durva, I getting #5 on this coming Monday. I am on a low dose 5mg steroid because of the stupid muscle and joint stuff ugh! I have had the middle back pain before Durva, CT scan didn't show anything so that's a mystery pain. I do however, have the shoulder and arm pain not as severe as yours was, but my oncologist seems to think it is from the Durvalumab but because it is intermittent not to worry 😬 another ugh! I really am not comfortable with Durva, but like my onc said there is nothing else out there for stage llla people and this is my best shot at curing my cancer now. I just hope I don't have a case of "bursitis" like you did! 
I hope you have a great run with the Tecentriq/Avastin combo! Take care of yourself
Roseann

Hello to The Durva Club-
I wanted to pass this information along to you-
On Saturday I was invited to speak to a group of medical professionals as part of a Continuing Education/Lung Cancer Awareness event.  I crashed the CEU program in search of new information. As a side note it’s amazing what the keynote speaker (from one of the big famous comprehensive cancer centers) had to say in the opening remarks.  “Lung Cancer is bad, really bad “ Obviously he didn’t know there was a patient lurking around in the audience.  He wasn’t a positive see the bright side of life type of Doctor. Shame on him!!
Anyway, a Durva study is about to be published about the efficacy of this IO and a direct correlation was discovered between the health and diversity of the gut microbiome and adverse events (any of the itis’s).   It was reported that many well advertised over the counter pre and probiotics had an adverse impact on the gut microbiome.  Too much of “good thing” is bad for you. 
 
those patients with a healthy diverse gut microbiome (measured in stool samples) had a very low incidence of adverse events, greater efficacy and ability to tolerate the full course of Durva.  

In my opening remarks I did call out this doctor and told him there are many brave survivors who have learned to live with lung cancer beating the odds every day. 
 
You guys inspire me! 
Michelle
 

Hi Ron. Lol, I’m sorry to say I remember that show. Sorry to read about your side effects. Hopefully they are temporary and/or controllable. It certainly is crazy how some people have no side effects or very little and others get more. Hang in there-we are all fighters and we are all going to win!!

Hi Ron-
Yep, all of those side effects!  The only thing I can say is that it’s a worthwhile trade off  For some reason Alectinib is dosed at the highest “tolerable” in a one size fits all category.  Approximately 3/4 of patients get stepped down to a lower dose which decreases most adverse effects.  
Hang in there through the “fine tuning process” with all those upcoming labs! 
Michelle

Hi Ron. I remember Elizabeth well lol! I hope the side effects are just your body adjusting to the new medicine. But there are other drugs for ALK+ people too, that may be better for you right? Good luck and God Bless!
Keep kickin' cancers *ss 😃 and have a nice weekend
 

Just wanted to update everyone on my transition from "Immunotherapy" with Durvalumab to "Targeted Therapy" with Alectivnib. 
Well welcome back "the itches". Just like after the first weeks on Durvalumab, after 9 days on Alectivnib, the itching has returned in earnest. However so far, no actual rash, and the itching is primarily on my legs and arms. One of the other mentioned possible side effects is "weight gain". I can see why, I now seem hungry all the time now. Luckily, in a perverse way, since my sense of taste went away during immunotherapy along with developing a dry mouth, nothing really seems to have any taste to it and forget eating anything dry or spicy, so that holds me back from eating ALL the time. Forget cake, cookies and potato chips, I can't even get them past my mouth (although Ice Crème still works😋).
The above I can handle (I call it will power but others call it just being stubborn), but I am more concerned with the developing Bradycardia.  Having had a heart attack years ago, my Cardiologist has had me on a beta blocker (Metoprolol Tartrate), which slows down the heart rate, I am also in chronic A-Fib with an irregular heartbeat, I now have Hypothyroidism (curtesy of the Durvalumab) which can slow the heart rate, and now the Alectivnib, which also can also slow the heart rate down. For the past few days, seated at rest, my heart rate has slowed from my normal seated at rest of 75 to 85bpm down to 60 to 70bpm, sometimes dipping into the low 50's. Wednesday night while checking my pulse rate on both my O2 Pulse Oximeter as well as my BP Monitor and seeing it dropping into the low 50's the following quote kept coming to mind; "This is the big one! You hear that, Elizabeth? I'm coming to join ya, honey!" (If you know the show that this is from, you're showing your age! 😉 My BP was running just a little low as well, but my BP monitor only alarmed once so I just put on my CPAP and went to sleep. I was both somewhat surprised and pleased to find myself still here the next morning and was for once actually happy to have to get out of bed to go pee. 😂 Heart rate was mid to upper 60's in the morning.
My Onc advised me to keep an eye on it and let them know if my pulse rate stays under 60. About that time I decided it was time to consult with my Cardiologist who immediately had me reduce my dose of Metoprolol by 50%. This has seemed to keep it above 60, but only slightly. 
Don't know if I am looking forward to my bloodwork next Tuesday out of fear that my AST/ALT readings may have shot up just like they did initially on Durvalumab, and my treatments will be suspended. Elevated AST/ALT readings are also a potential side effect of Alectivinib as are muscle pains, tenderness, weakness, fatigue, constipation, nausea and shortness of breath. Boy these various treatments sure share some similar potential side effects!
Have a great weekend all.

Barb   ..sorry to hear you need to skip an infusion, I hope the time off gets you back on track.
Sillycat  .. you may find this interesting  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5767492/
 
I got #14 today, blood work all good ,most  fatigue is gone. No side effects. No other medications except 1/2 gram cbd oil in a cap most nights
CT says I'm still NED!!
enjoy the season
 

Well the pulmonologist visit went better than expected. Took another X-ray (starting to worry about all this radiation) and showed nothing,no fluid, no Pneumonitis so the consensus is pleuritis for sure. No prednisone-both the onc and the pulmonologist agreed that at this stage it’s better to let it run its course and just take over the counter anti inflammatory drugs and patches. Said the prednisone will stop the Imfinzi in it’s tracks. I had a bunch of PFTs and said the results are the best they have ever been. Said if I wasn’t doing so well he would consider steroids but he ain’t screwing around with it.  Got to go back 4 days after the next infusion to see if it made my symptoms worse. Hopefully with skipping a dose it will all calm down. Did learn that there are no nerves in your lungs, they are all in the Pleura. One good thing, might have to cancel the gross GI tests at the end of November. No anaesthesia with pleurisy-oh darn I was looking forward to cameras in all my orifices 😬

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

Good to hear from you Charles! and thank you ! I did have a 2 week break from treatment and pretty much all of my pain went away, so yes it is from the Durva 😃 however, a lot of my chest pain is stress related as I am dealing with a lot of personal and financial issues along with this nasty cancer beast =( but I have a pill for that too haha! I just have to pick my battles with care these days.  Actually, today I see my counselor and physically I really feel not bad 😃 so I'm hoping for a good day!
I have heard some good things about the CBD oils, I'm a light weight, everything pretty much knocks me flat out hahaha! My Neurologist has told me NO! to both Medicinal Marijuana and CBD oil on my last visit in June. I have Petit Mal seizures sometimes lasting up to 5 minutes and he said he doesn't want me wandering around high as a kite in a fog looking for a cookie that isn't there lol!   So for now I think I will try more meditation to help with the stress, keep close to the members of my family that are positive and relax and breathe 😃

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....

Hi Barb-
The Durva Road isn’t an easy one for sure.  The treatment break will hopefully help relief some of the pain which can be debilitating physically and emotionally.  You’ve got serious mo-jo so carry on- Jersey strong. 
Michelle

Silly-thanks. That’s exactly where all my pain is except my lung hurts when I breathe and when I sneeze it hurts like is going to explode. I said today it’s the same spot on my back where the radiation scar was. Haven’t had any since February so Cant say it’s related. I’m happy for the break and the doc isn’t too worried about any negative impact on the treatment. I just want a week without pain when I need to use my arm