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Durvalumab


Robert Macaulay

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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

 

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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."

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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

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On 3/7/2020 at 11:12 AM, PShsy said:

Hi everyone,

Just finished infusion #1 and am a little worried about side effects. 

Had scans done and left nodule  reduced from 4.2 x 3.2 to 2.4x 2.0. Other nodules reduced is So grateful. But am feeling more out of breath?? 

Love reading up on everyone. 

Polly 

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

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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


 

 

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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.  
 

 

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Hi all, 

I am going for my 9th dose of Durva today, also results of CT scan from last Thursday.  Did anybody in their course of treatment have side effects stop or get better?  Was having terrible muscle joint pain and started having back pain that would wake me early morning and had to get out of bed. It seems to be subsiding some.  Also my shortness of breath is less often.  I’m not complaining mind you, just curious. 
 

Thanks,

Babs

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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."

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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

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Babs ... turmor scar tissue and no signs of cancer cells is great news. I am NED and the scar tissue still shows on my CT. It is advised that we all get our thyroid checked, it was the cause of my fatigue. I was given levothyroxine and in about 6 weeks fatigue much less. Have your husband take notes so you can read them at home, it helped me.

"When tempted to fight fire with fire, always remember… The fire department usually uses water."

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Welcome Babs,

Tomm did a a great job of covering side effects with you. My muscle aches and joint pains, headaches and back pain lasted thru out my year of Durvalumab......it was something I was able to live with with the aid of Ibuprofen 800mg and Tylenol ES. My symptoms never escalated to a point where I felt it needed more than my OTC analgesics. My thyroid levels were fine but I did experience fatigue and a lack of stamina and endurance. It helped that I continued being active and I tried to get in some "formal" exercise at least every other day. I never felt that it got better or worse as time went on with Durvalumab...it was just always there, reminding me that I do have some limitations. 

I will also echo Tomm's recommendation of drinking water and lots of it if you don't have any fluid restrictions.

Congratulations on having your original tumor delegated to being scar tissue. How freaken awesome is that!!!

Take Care, DFK

I'm taking care of my procrastination issues. Just you wait and see.

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Georgia,

Good to hear your husband has found an agreeable solution to his chest skin discomfort with Excedrin. Sounds like an easy fix. Great. Please share your topical solution.

About your experience in keeping your husband's diagnosis close to the vest, and disclosing it to a select few......interesting. I suppose you never really know how someone will respond, do you, once you let the cat out of the bag. I elected to keep my diagnosis within my nuclear family, and yes, also to one good friend who I've know since grade school, because I wanted to keep my focus and energy on me. 
 

Take Care, DFK

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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?

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Barb- that totally sucks!  Aside from the appeal process you might want to call the Department of Insurance or your Senators.  They despise insurance companies and are happy to advocate on our behalf.  Plus it’s another way to get out this frustration.  😡 

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Michelle-i was going to appeal but I may wait until the end of this Imfinzi which is May 7th and fight for one then as if I got one now it will be another fight then.  I’m speaking to my case manager also and to the docs office Thursday about them doing a peer to peer. . One test-20 phone calls-ridiculous 

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6 hours ago, Barb1260 said:

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?

Fight for your rights! And don't quit, you are entitled to a certain amount of PET scans while battling cancer. FIGHT FIGHT FIGHT!!!!

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Just called to get the criteria. Because I was already diagnosed-gee ya think?-they don’t approve without good reason such as a bad CT or MRI or bone scan. When I said it’s to check if the Imfinzi is working she stated all the doc has to do is have a peer to peer explaining that and it should get approved. So back to my original plan-talk to the doc Thursday and decide if now or after 5 more infusions. Pain in the butt. Going to do my 3 miles to blow off steam. I had to call just to witch at someone there. JG roots ahowing

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1 hour ago, Barb1260 said:

Not entitled to anything more than a CT every 3 months. They want to pay for both instead of just the PET if they find something. 

 

20 minutes ago, Barb1260 said:

Just called to get the criteria. Because I was already diagnosed-gee ya think?-they don’t approve without good reason such as a bad CT or MRI or bone scan. When I said it’s to check if the Imfinzi is working she stated all the doc has to do is have a peer to peer explaining that and it should get approved. So back to my original plan-talk to the doc Thursday and decide if now or after 5 more infusions. Pain in the butt. Going to do my 3 miles to blow off steam. I had to call just to witch at someone there. JG roots ahowing

Hmm, Barb well to see if Durva is actually killing cancer, I honestly believe that a PET wouldn't give that information. What it will show ( as you are aware of) is any uptake.  In fact Durva has not gotten that far to tell on a PET. So the CT will show any new tumors ( God forbid) so that is where they leave it, unfortunately. And you are still tolerating the Durva walking 3 miles so I am saying Hip Hip Hooray, and lets start another day!!! The best always, Kate

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