Sillycat1957

Hey all you my fellow Durvies!
Just had #15 yesterday, I too, was met at the door by a nurse with a mask,  6 questions, took my temp, before I was allowed in for my treatment! But I felt it was better to be safe. I was pre screened on Friday so I was a tad annoyed, but what the heck, she was just doing her job. They also were practicing social distancing in the treatment room all patients were 6ft apart. No one is allowed to have a friend/caregiver accompany them until further notice either.
As for my treatment that went off with no problem this time, but when I saw my blood work, my TSH level is 6.4! that's pretty damn high isn't it? I called my Oncologist this morning and they are running additional tests on my blood to check my T3 and T4 whatever that is. I don't like that number it's way over the range isn't it? Anyway I'm waiting to hear.
Grahame, I'm one of the people taking 5mgs of Prednisone to calm down the nasty muscle and leg elbow etc pain side effects caused my Durvalumab. It's helped me tremendously! I hope all goes well with you moving forward, and you can continue getting your treatments.
Babs, Hi, I have skipped 2 treatments so far due to various side effects that I had to see different doctors for, everything turned out ok. Better to be safe than sorry. I have a great team of doctors.
DFK, so happy to see your still hear sharing your experience and hope with everyone!
Polly, Hello, I had some shortness of breath when I started Durvalumab, I skipped a treatment to see if that was why, and it was, so that's one of the reason my Oncologist put me on the prednisone. I wish you well on your journey!
Namaste, everyone, be sure to stay safe and keep those hands washed LOL!
Michelle, your advice is always so appreciated 😃
Roseann
 

Hey all you my fellow Durvies!
Just had #15 yesterday, I too, was met at the door by a nurse with a mask,  6 questions, took my temp, before I was allowed in for my treatment! But I felt it was better to be safe. I was pre screened on Friday so I was a tad annoyed, but what the heck, she was just doing her job. They also were practicing social distancing in the treatment room all patients were 6ft apart. No one is allowed to have a friend/caregiver accompany them until further notice either.
As for my treatment that went off with no problem this time, but when I saw my blood work, my TSH level is 6.4! that's pretty damn high isn't it? I called my Oncologist this morning and they are running additional tests on my blood to check my T3 and T4 whatever that is. I don't like that number it's way over the range isn't it? Anyway I'm waiting to hear.
Grahame, I'm one of the people taking 5mgs of Prednisone to calm down the nasty muscle and leg elbow etc pain side effects caused my Durvalumab. It's helped me tremendously! I hope all goes well with you moving forward, and you can continue getting your treatments.
Babs, Hi, I have skipped 2 treatments so far due to various side effects that I had to see different doctors for, everything turned out ok. Better to be safe than sorry. I have a great team of doctors.
DFK, so happy to see your still hear sharing your experience and hope with everyone!
Polly, Hello, I had some shortness of breath when I started Durvalumab, I skipped a treatment to see if that was why, and it was, so that's one of the reason my Oncologist put me on the prednisone. I wish you well on your journey!
Namaste, everyone, be sure to stay safe and keep those hands washed LOL!
Michelle, your advice is always so appreciated 😃
Roseann
 

Hi, just catching up on posts, I worked in the Insurance field, and yes they will deny deny deny, you just have to keep after them like a barking dog! Unfortunately =( until you get the right person and you will get approved. Rule of thumb was deny 3 times before approval, made no sense then, but that's how they did it. I had a headache everyday, getting people approved in the mental health field. I'm sure it's the same in the medical field as well.

Barb, Congrats!! NED!!! Yay, that is WONDERFUL 😃
I'm still trudging along, had infusion 13 and 14. # 14 port was clogged again! that makes 3 times now! This time after pumping and some heparin half a bag of saline drip, it opened up, thank gawd! It freaks me out! Other than that, I'm glad to see all the NED post flying around here. That's awesome! 
My next CT/Scan is going to be scheduled in May so I can only hope my 9mm tumor is gone 😃
Michelle, no one wants to hear about Naltrexone, I see my MD again this Wednesday, I will ask again. I love when my team of Doctors just say we have other things to worry about right now WTF! 
Any who, Have a Happy ST Patricks' Day everyone!
Roseann

Barb, Congrats!! NED!!! Yay, that is WONDERFUL 😃
I'm still trudging along, had infusion 13 and 14. # 14 port was clogged again! that makes 3 times now! This time after pumping and some heparin half a bag of saline drip, it opened up, thank gawd! It freaks me out! Other than that, I'm glad to see all the NED post flying around here. That's awesome! 
My next CT/Scan is going to be scheduled in May so I can only hope my 9mm tumor is gone 😃
Michelle, no one wants to hear about Naltrexone, I see my MD again this Wednesday, I will ask again. I love when my team of Doctors just say we have other things to worry about right now WTF! 
Any who, Have a Happy ST Patricks' Day everyone!
Roseann

Hi, just catching up on posts, I worked in the Insurance field, and yes they will deny deny deny, you just have to keep after them like a barking dog! Unfortunately =( until you get the right person and you will get approved. Rule of thumb was deny 3 times before approval, made no sense then, but that's how they did it. I had a headache everyday, getting people approved in the mental health field. I'm sure it's the same in the medical field as well.

So ticked off right now. Insurance denied PET again. Said unless CT is inconclusive won’t approve a PET. So now it’s another CT to be scheduled. How are you supposed to know if it’s dead or spread somewhere else without a PET?

Hi,
Tomm - Thanks for the info.  Do you think your side effects went away because of the meds?  My Onc was thinking about starting me on steroids today as the CT showed some “activity, inflammation, fluid” but wasn’t real concerned, especially when I told her my back pain and shortness of breath seemed to be getting a little better.  She thought we should watch it and see what happens going forward.  I agreed.  She did say the original tumor is “scar tissue now with no signs of cancer cells”.  Good I guess?  Amazing how you think you understand everything being said and later question what you heard. I even had hubby with me. 😆 
 
Hope all is well with you and the rest here.  I have yet to know all your stories.
Take care,
Babs

Hi Babs   ..Please complain.. this is the place to do that and it helps to inform others that may think it's just them.  My side effects started to go away after infusion #9,  my thing was fatigue because they were not checking my TSH and I went up to 130+, now down to 5.1 with medication. Tell you doc of your side effects, he may be able to help with that. Hope you get great CT results..
"A TV can insult your intelligence. But nothing rubs it in like a computer."

You didn’t miss anything.  DFK and I received a PM from our JG with an update. 
Opal posted a request for prayers as her husband was admitted to the hospital at the same time she was having scans.   
I think the best way to support Opal is to find the best Jersey style pizza and eat at least two slices.  She’ll be back to the Forum when she’s ready.  
 
 

The entire family feels Opal’s loss.  Thank you for letting us know.  When Opal is returns to the group, we’ll all be here with open arms.  
Michelle

Good Sunday Morning to all,
A philosophical post this morn......a little sadness, a little spiritual joy, intermingled with this journey called life. Allow me this time, with words, to express what is on my mind. The Durvies know me, so it is here where I will post and release the "Cracken" of my thoughts. It's also dedicated to Rower Michelle and Eagle 13.....read on. 
Recently, my bff of some 50+ years lost his partner Bill of 35 years, to cancer. They were gay and during the turbulent years of the 80's with HIV, panic and fear made them hide their sexuality, their coupling. It was a difficult time, the 1980's, as beautiful young men and women were dying in droves and there seemed to be no end or resolution to the HIV virus and crisis.
At the time, I was doing home health nursing in Hawaii. It was not unusual for gay couples to bring their entourage of friends with one dying friend to celebrate their last days in paradise. I was the nurse who went out to their luxurious vacation homes or condominiums on the beach, infused their "HIV" medications and gave them new IV packs of morphine to control their pain. 
I was tasked with visiting my HIV patients on an 8am-4pm schedule. Receiving the HIV infusions usually ruined the rest of the day for my patients so there were times when I broke the rules and would schedule a visit at night to allow my patients a "free" day of vacationing. Of course these night time visits included some blackmail as in providing me with a delicious home cooked meal or a nice new haircut and do, followed by a mai tai or two. Despite all this sadness around dying, you try to find some light and humanity.
Bill and my friend were not high risk and they weathered the HIV storm and lived a good life until Bill's diagnosis of Cancer. He passed within 18 months of diagnosis. Those 18 months were pure hell for my friend the caregiver and Bill, the patient. Bill was in treatment, suffered thru numerous hospitalizations and indignities. In came the hospital bed and wheelchair and daily dressing changes and doctor visits and social workers pushing to Hospice and hurried doctors. A world turned upside down. 
I asked my friend how I could help and he denied needing any help, he was taking care of business. His emotional grief was held at bay In lieu of pragmatic necessities and I honored his request. 
Last night I learned of Opal's  (our fellow Durvie) husbands passing last week Sunday. His body had succumbed after four years of living with Pancreatic Cancer. It got me thinking (as you can tell) about a myriad of things. Most of all, I thought about how much Opal has to contend with and it made me sad. Like the sadness I felt caring for so many HIV patients and my friend who cared for Bill. You are able to help the patient as their needs are direct and most times, solvable. But my feeling of helplessness and empathy to help those that are left behind stay with me, ever present.
We all know how much processing has to take place, the utter shock, the waves of grief, a new life to navigate. Somehow, our friends and family navigate thru all the challenges and like Cancer, our lives are never quite the same. And like cancer, it's a solo journey of navigating thru OUR uncharted waters. 
Thank you Opal for trusting me with your heart, your feelings and inviting me into your canoe. You will do almost all of the paddling alone,  but you know you have a team that will be there as you steer, guiding and supporting you on your new journey. You are loved.
Let me also relay that Opal's last scan was reported as stable, next check in 3 months.
Take Care, DFK

 
 

Hi Polly, something that I learned along the way, check what your PDL1 is, mine was negative,  also make sure that auto immune disease does not run in family history. I had a very bad experience with durva, and right from the start had very very bad side effects, also with breathing. I do pray that the Dr that is treating you is on top and has your complete recovery in mind, unfortunately I didn't have that experience and now suffer from the after effects, I am not trying to scare you, however you need to be your own advocate, I certainly wish you every success and hoping that you are breathing a little better now! You have had success with chemo radiation and that is TERRIFIC! All I know is that Durva is not suited for everyone. Also check to see if you have bio markers. You have to be aware of all that is available to you. Prayers are coming to you now from me! Kate

Hi, DFK,
Your posts are so informative, I really learn a lot. You followed up asking about my husband's chest skin sensitivity; he said it's about the same but he  has found the Excedrin ES seems to take care of it and rates the pain as a "2", so the doctor has not recommended anything further. However, I am looking into a topical "recipe" to try which he says is OK. I have been the record keeper and researcher since we started this journey. He is the exact opposite, oh well.
I read some of your comments from the post on Weds. about not disclosing your diagnosis to anyone except your husband and 2 sons. My husband basically felt the same (he did tell a best friend couple we've known for about 30 years). This was his decision to keep it private and I agreed. However, last year my younger sister and her adopted teenage autistic son were planning a visit (from Ariz. to Wa. State) at about the same time he would be  having the radiation/chemo 5 days a week for 6 weeks. I felt we had to inform her as we could not manage a visit and continue with travel to clinic for 6 weeks (200 miles round trip to clinic in summer heat, etc.).  He said OK, so I did inform her and another sister I'm also in touch with in Calif. with the understanding this is to remain private and should not be shared with anyone in family or anyone else for that matter and that was my husband's desire and choice. My sister in Az is not religious and neither are we although we do believe in God. She is a very spiritual person and posts lots of "uplifting" stuff on FB - some I agree with, some I don't but usually do not comment. I feel she also posts stuff that I feel is hypocritical since she does not practice it - again, I do not relay that at all although I may vent to my husband, lol. After she learned his diagnosis, she started sending emails and/or postings on FB about "end of life" choices, spiritual blessings, etc. It became too much for us very quickly, and I sent some very strong emails telling her in all caps to STOP this stuff right now - not helpful, was intrusive, and we don't want it. I respect her beliefs even if I'm convinced they would not be my choice. She finally got the message and stopped it (that was approx. June last year).
Then over the past 3-4 months, she has posted 3 articles, etc. on my husband's FB page - I do not have a FB page but can access his plus Messenger, and don't usually look at it regularly. However, he informs me "well, she's done it again."  First he said she posted an article about "Surviving Cancer" and stated, "Foster, you should read this."  He responded to her privately via Messenger (assume it was "stop, this is private, etc.).  Then a month or two later, she posts an article about "Chemobrain" and says "Did you have this?" My response was, OMG, what is wrong with that woman?  Again, he responded via Messenger. Personally, I had never heard of Chemobrain and his doctor, nurse, etc. had never mentioned it nor was it in anything I read about his treatment. I researched it and found it was primarily a possible side effect of breast cancer patients.  The 3rd posting was recently and was about Alex Trebek of Jeopardy TV program announcing he had to have a 2nd round of treatment for pancreatic cancer (we saw his 1st announcement in March last year) - she implied since Trebek was open about diagnosis, why couldn't he do the same? This was when I said "Enough is enough"; this is not an email matter and I phoned her. Basically, I said "You don't have the right to break Foster's privacy and my confidence. I regret sharing this and I will never share anything with you again. I have to limit our communications for a while." She apologized, etc. She is not stupid and I still can't understand why she would do such a thing; she did deny posting the last item about Trebek in a public way on FB - however, Foster said it did appear on his FB page for anyone to see.
It's late at night which is when I think more rationally - please forgive this long diatribe - just had to vent I guess.
Always enjoy the jokes here, wish I had a clever one to add ......
Have some more progress to report and some questions but will do that another night, this is long enough.
Thanks again to everyone who shares their experience and cares ...
Best Wishes to all,
Georgia

Hi Polly it's good hear your on your way with Durva and your killing your cancer. I look at side effects as part of the battle going on in your cells with the Chemo and radiation still in the fight and now getting help from Durva. It's OK for you to call your Doc anytime you have a worry and he-she may have some help for you & or ask here and someone may have an answer.
keep us posted and drink lots of water
"I have a lot of growing up to do. I realized that the other day inside my fort."

Hi Polly,
Nice to hear from you again and congratulations on receiving your first dose and knowing that so far, so good, your nodules are heading in the right direction....to nothingness. And that is an awesome thing. Please know how fortuitous it is to see that kind of shrinkage in your nodules. 
I always kept a journal of sorts, brevity kept it going since I was diagnosed in August of 2018. I would do little notes daily as in, a little short of breath going up stairs, or a good day today, able to do all housework, or bad headache today. It helped me to track for any consistencies and changes in my status. 
Talk to your MD about your shortness of breath if it is consistent. You may be having a response from the chemo and radiation or a reaction to the Durvalumab. Or it may be intermittent physiological response depending on your level of activity, anxiety if present or a myraid of other factors in the "who knows why" category. To me the key is to monitor when it happens and trend for consistencies. When you do talk with the doctor, you'll have some information that he or she can use to make a determination of how to help you.
Again congrats, you've made it to Durvalumab and everyday is bringing you closer to our common goal of nodule nothingness
Take Care, Blessings, DFK
 

Barb 
FABNO =  Fellow of the American Board of Naturopathic Oncology     http://www.fabno.org/
Why did Beethoven get rid of his chickens..?    all  they said was "Bach,Bach,Bach
 

You guys just kill me with your jokes!!!! Keep 'em coming 😃
My sense of humor is sadly lacking these days. As I told my Oncologist this week at my visit "The only stability in my life right now is my Cancer" She said "that's a great thing" I have to agree!
Tomm, I do get my TSH levels checked before every infusion so far they have been ok, I did have Thyroid issues in the past so I am always asking about my levels.
Here in CT, especially where I live Naturopathic doctors are a dime a dozen and tons of them take insurance, but like Tomm said the supplements are what are costly, because they are out of pocket, unless they can be billed, some will do that. Not sure if they are all Oncology types tho.
DFK, I hope you feel better soon, you need some old fashion chicken soup!
Good Night All
 

Hello. all is well in Durvaland, what a bunch of problem solvers we are eh!
Barb,
Yes I now wear flats or wedgies like Michelle said, heels are so passe! #19 down yay!
Tomm,
I love your hippie jokes, Namaste haha 😃 #21! I don't have a hippie joke but sheesh your a trooper I can't recall any complaints from you since I've been a part of this group?
DFK,
I only had a few skin issues with my radiation, I had 31 daily treatments same as you 60gy, only a bit of redness in the middle of my chest a the nurses gave me samples of an awful smelling ointment called Aquaphor, really thick almost like a vaseline. But it helped a lot. My skin never peeled. I did however, get a bad case of esophagitis tho. had magic mouthwash for that, minus the benadryl, that has the opposite effect on me, makes me climb the walls! Sheesh, I do not react well to meds, who knew?
Georgia,
Welcome, I started taking Gabapentin, about 2 months ago, after my Neurologist ok'd me to take it. I had awful pain in the middle of my back that nothing would help. He told me to take it at night only. That's when my pain seems to be the worse, when I go to bed, it took a good 4 wks for me to feel the benefits. So maybe your husband should give it another try. I has helped me tremendously, I have oxycodone, but I only had to take one a few weeks ago when I had to use a snowblower for the first time! I'm sure if someone was recording me they could have sent it in to AFV LOL!
Michelle,
I called my Neurologist and asked about Naltrexone, I left a message, my nexy appt is in March, he is a stickler for "I must speak with you" "Your brain is a funny mechanism" kind of doctor, but I love him, so I will wait and see,
 
Good night all
Roseann
 

Barb, Tomm and Roseann, You guys are kicking it. Happy to hear of uneventful infusions as you are nearing the finish line.
Tomm, thank you so much for the link to FABNO Naturopaths. I have been keeping a list of all the complementary medications you and Michelle have mentioned and will follow thru. Forgive me for my ignorance, but do Naturopaths accept insurance or is it private pay? I looked at nearby cancer centers and no one has an integrative team, seems I have to look outside for an independent Naturopath. And the Naturopaths that I found stated cash or credit card payments to be paid with service rendered. 
Roseann, About my right chest front and back muscle aches and pains.....I definitely will be addressing this further as sometimes the pain and spasms can be crippling. I sailed thru my radiation treatments without any skin or esophageal problems, so I just chucked up my pain to damaged tissue and irritated nerve endings....I'd love to find a solution.
Been down for the count the last six days....thought it was a run of the mill cold, nope, I got a touch of the flu and am TKO. Am on the mend but still weak and intake remains minimal. Not a good way to drop 6 lbs., nor a good way to celebrate finishing a years worth of Durvalumab. A visit to Urgent care confirmed I don't have an infection to my ears (it hurt so bad)  and my lungs seem to be handling the coughing without an infection. Thank goodness, the last thing I really need is pneumonia. I always though of myself as pretty darn resilient but I do believe managing our cancer and processing the chemicals in our body does take a toll on our immune system. I've never had the flu and I've never taken a flu shot....lesson learned, things are not as before.
I visited the Air and Space Museum. Nothing was there.
Take Care all, DFK
 

#21 done yesterday, blood work is fine but I do have a few small spots that itch. My CBD tincture is helping. I'll be done in 9 weeks and 6 days but who's counting.
Silly Cat..  I did have an issue before you were here. I started this last April and was getting more fatigue with each infusion and by mid-july I needed a cane when I was outside. In late July they tested my TSH for the 1st time and it was about 30, and then it was 139 in as few weeks. I am now taking 150 mg of levothyroxine and that has me back to normal range. So make sure you get your TSH checked.
I have many jokes about unemployed people, sadly none of them work.

Hello. all is well in Durvaland, what a bunch of problem solvers we are eh!
Barb,
Yes I now wear flats or wedgies like Michelle said, heels are so passe! #19 down yay!
Tomm,
I love your hippie jokes, Namaste haha 😃 #21! I don't have a hippie joke but sheesh your a trooper I can't recall any complaints from you since I've been a part of this group?
DFK,
I only had a few skin issues with my radiation, I had 31 daily treatments same as you 60gy, only a bit of redness in the middle of my chest a the nurses gave me samples of an awful smelling ointment called Aquaphor, really thick almost like a vaseline. But it helped a lot. My skin never peeled. I did however, get a bad case of esophagitis tho. had magic mouthwash for that, minus the benadryl, that has the opposite effect on me, makes me climb the walls! Sheesh, I do not react well to meds, who knew?
Georgia,
Welcome, I started taking Gabapentin, about 2 months ago, after my Neurologist ok'd me to take it. I had awful pain in the middle of my back that nothing would help. He told me to take it at night only. That's when my pain seems to be the worse, when I go to bed, it took a good 4 wks for me to feel the benefits. So maybe your husband should give it another try. I has helped me tremendously, I have oxycodone, but I only had to take one a few weeks ago when I had to use a snowblower for the first time! I'm sure if someone was recording me they could have sent it in to AFV LOL!
Michelle,
I called my Neurologist and asked about Naltrexone, I left a message, my nexy appt is in March, he is a stickler for "I must speak with you" "Your brain is a funny mechanism" kind of doctor, but I love him, so I will wait and see,
 
Good night all
Roseann
 

Hello. all is well in Durvaland, what a bunch of problem solvers we are eh!
Barb,
Yes I now wear flats or wedgies like Michelle said, heels are so passe! #19 down yay!
Tomm,
I love your hippie jokes, Namaste haha 😃 #21! I don't have a hippie joke but sheesh your a trooper I can't recall any complaints from you since I've been a part of this group?
DFK,
I only had a few skin issues with my radiation, I had 31 daily treatments same as you 60gy, only a bit of redness in the middle of my chest a the nurses gave me samples of an awful smelling ointment called Aquaphor, really thick almost like a vaseline. But it helped a lot. My skin never peeled. I did however, get a bad case of esophagitis tho. had magic mouthwash for that, minus the benadryl, that has the opposite effect on me, makes me climb the walls! Sheesh, I do not react well to meds, who knew?
Georgia,
Welcome, I started taking Gabapentin, about 2 months ago, after my Neurologist ok'd me to take it. I had awful pain in the middle of my back that nothing would help. He told me to take it at night only. That's when my pain seems to be the worse, when I go to bed, it took a good 4 wks for me to feel the benefits. So maybe your husband should give it another try. I has helped me tremendously, I have oxycodone, but I only had to take one a few weeks ago when I had to use a snowblower for the first time! I'm sure if someone was recording me they could have sent it in to AFV LOL!
Michelle,
I called my Neurologist and asked about Naltrexone, I left a message, my nexy appt is in March, he is a stickler for "I must speak with you" "Your brain is a funny mechanism" kind of doctor, but I love him, so I will wait and see,
 
Good night all
Roseann
 

Michelle-guess it was the heels because it’s much better today. Didn’t see the onc today but got #19. And I lost 1 lb so woohoo-gotta celebrate the small things. 

Barb- heels should be banished from our wardrobe, they are so last decade.  I tried to sell some new beautiful heels to the consignment store and was told no one is really wearing them. (All about the wedge).  I’m willing to bet that’s the source of your hip pain.