DFK
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Posts posted by DFK
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Barb1260-Shocking is putting it nicely....I myself have a few choice adjectives that I use when I need to express my "disappointments". I try to stay positive and in the "light" because the dark places I can go to is nasty and not conducive to where I need to be. My husband is supportive but he, being of the testosterone variety, always try's to find a solution, or a path to work things out. Sometimes there is no path or working out our emotional disappointments, but you and I know, we've ridden this ride before and we're still here, and we can do it again. Get those stretched out big girl panties and put‘em on again.....laugh, cry, and stay in the light of positive healing vibes. You can do this Barb, one minute at a time, one hour at a time, one day at a time. Keep us posted with updates. Sending you ❤️ DFK
- Rower Michelle, Charles and Barb1260
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Barb1260-So sorry about newly found 5mm nodule. Let your medical team do what they need to do to work it out and you stay away from that dark place until you know what you’re dealing with. In the meantime, as anxiety provoking as all of this is, you take care of yourself in whatever fashion you need to, that has worked in the past, to bring you to a place of peace and hope. You've got this. You're a great comfort and support to others, now is a time to comfort and support yourself. Stay positive 🙏🏻❤️🙏🏻❤️.......DFK
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Bob and RonH-thank you for sharing your continued journey. I am sorry you're having to contend with all of this but both of you appear, despite the emotional setback of having to "go there" again, totally committed to doing whatever needs to be done to "take care" of what needs to be done. You both got this covered and my prayers are with you every step of the way....never forget that.
Truthfully and sadly, it is also a wake up call for all of us Durvalumab users. I had negative molecular markers, not even a itsy bitsy bit so I do ponder the effectiveness of receiving a monoclonal antibody that blocks the interaction between PD-L1 and PD-1. I know the literature states that having PD-1 is not contingent for the success of longer progression free survival, but it is food for thought.
I am 12 months from Stage 3B diagnosis and everyday I tell myself I am getting well, I am on my way to perfect health. I truly believe in intent and hope. On the day that I met my oncologist, he perfunctionally and pragmatically laid it all out on the table. A very scary scenario, but I'll never forget his words when going over my treatment plan with Durvalumab.....”The medication can be curative". I just about fell off my chair as Lung Cancer and curative were never used in the same sentence. I know the percentages, I know the risks.....and I pray, pray, pray.
So, all of us here are rowing that same boat.....to get to the finish line with longer PFS and OS. We can all do this.....some paths may be circuitous, others a little straight and narrow but I know, we are the pioneers that are pushing for and obtaining PFS and OS and eventually, a cure.
Barb1260-Damn, I just got a G.I. referral too because of my voice issues and my oncologist thinking it may be delayed radiation esophagitis affecting my vocal chords.....he also giggled and said waiting for an ENT referral (3 months) is obscene and maybe G.I. can have a look sooner than later. So I just scheduled my looky loo upper g.i. scope for October 1st. I too have intermittent back pain and thoracic pain but have been chalking it up to life in the post chemo and radiation lane. You never know what to think or how long and hard to pursue these symptoms with your doctor.
Interesting times for all of us. You all are in my prayers.....
With Blessings and Gratitude, DFK
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You are all in my prayers every waking moment......but for RonH and Bob, extra blessings please.💕😇🙏🏻
DFK
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Laurel and Tomm:
Thanks Laurel for info on oncology mouth rinse. During my radiation and chemo treatments I had zero issues with my throat or swallowing. I maintained my weight and appetite. But apparently, radiation adverse events can pop up any old time. And my oncologist is surmising that my voice issues may be stemming from acid reflux or nerve damage.....both adverse post events from radiation. So even when you sail thru one treatment, the bogeyman is there to catch you later on.....darn it.
We'll see what pans out when they can visually inspect my vocal chords and esophagus. Then and only then will we have a definitive answer.
In the mean time I love what I have read on Manuka Honey and I will purchase some. The three a's....antibacterial, antiviral and anti inflammatory.....where can you go wrong.
“Manuka honey is a unique type of honey.
Its most notable attribute is its effect on wound management and healing.
Manuka honey also has antibacterial, antiviral and anti-inflammatory properties that may help treat numerous ailments, including irritable bowel syndrome, gastric ulcers, periodontal disease and upper respiratory infections.”
Thanks Tomm for info, for sharing.
Barb1260 -Congrat on #10 and being in the Durvalumab double digits. Are you doing anything special for mouth sensitivity and burning sensation? Can you tell me what they used to unclog your port on your next visit? I thrive on nitty gritty details like that....
Ron H- Sorry to hear of PETSCAN uptake and need for biopsy. Please keep us informed of the biopsy results. Reaching #18 is an accomplishment....job well done. I do believe that all of us here, receiving Durvalumab, are strong fighters and advocates. We are doing what we need to do to prolong our lives, to keep our cancer at bay. Not always an easy journey. Your articulate writings and knowledge base is admirable, just as admirable as you are now, facing this new unknown you've been handed. Thank you for sharing your story. Thyroid saga? Don't keep us hanging too long......
Take Care everyone......DFK
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Good Day to all,
#17 infusion is a done deal this past Tuesday.
Labs remain within normal parameters. YES!
Got a mean case of generalized itchies within a few hours of infusion, abated with an antihistamine. Only needed that one dose.
Always get mild headaches for a day or two after the infusions. They abate on their own, no analgesics required.
Experienced a bit more fatigue than usual so I laid back for a good 24 hours before I felt "normal" again.
Voice still lacking volume and pitch at times, waiting on ENT referral. Oncologist suspecting vocal chord nerve damage from radiation treatments x30 back in November to December 2018, since acid reducers x2 months have not alleviated the problem. I dunno, I just go with the flow and my grandkids thinks I'm hilarious talking like Minnie Mouse. Oncologists can guess all he wants but ENT needs to do a visual.
And as an added bonus, Oncologist just threw in a G.I. referral in case I have late stage esophagitis, again a late entry from radiation. He said it's about the right time to experience some late effects of esophageal scarring....Oh...ok! Dazzle me won't you with these added surprises.
Added another pound to my weight. My oncologist is perplexed. I have gained 16lbs in 8 months.....not a whole lot but it's uncanny how I gain a pound with each infusion. No symptoms of fluid retention and I am by no means lacking in physical activity....I do my one hour of biking exercise every other day whether I am feeling the love for it or not. It is my contribution, my Rx, for my continued good health. Appetite pretty much the same. Strange!
Ok, getting some of everything but the kitchen sink thrown at me.....let's get it ruled out. Don't like the feeling of a compromised voice if from esophagus with acid reflux or nerve damage.
On a positive note, I have tolerated these infusions extremely well. And I am living a pretty near perfect functional life. I use to say, hey, when my infusions are done in January, I will _____________. Then I thought, what?, why wait, live it fully now. I feel fortunate to be alive and well one year after initial diagnosis Stg 3B NSCLC and 8 months into immunotherapy.
Just a post script.....last Cat Scan I had was end of May for pneumonitis. MD will not do another scan until end of immunotherapy. Which equals to 8 months. He gave me his rationale and it all falls into place though it is not in line with best practice algorithm recommendations. We went back and forth addressing my concerns and worries. I'm okay (for now) with his response.
Thank you all for your support.....always helps me to articulate what is occurring by writing it down.
With Blessings and Gratitude, DFK
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Greetings this Labor Day weekend to all,
i have the grands so been on the go since Friday afternoon....hiking and swimming hole'ing. I am beat but joyous.
RonH-You should be coming along with your antibiotics. Sending positive healing prayers for good news and reinstating Durvalumab so #19 can be put behind you. PETScan this week? Hang tight bro, you got this covered.
Tomm-Congrats on completion of #10 and continued normalizing of labs....impressive!
Barb1260-Mouth sensitivity and a burning sensation....sorry about new symptoms, please keep us posted as to what MD thinks.
Charles-Lowering of TSH is awesome and having Prednisone at the ready. Love it. Not all doctors are so accommodating. Nice that you have one who trusts your own assessments. Dorian up to Category 5, not pretty for Eastern Border. So yes, a right northern turn would be ideal.
I'll be heading for #17 this Tuesday. Peaks and Valleys with fatigue....seems unrelenting at times, and at other times, not even an issue. Have had a couple "trips" as in "Grandma fall down". That's what happens when you’re out in the wilderness hiking on uneven terrain with new found fatigue and weakness. So far, just some minor bruising and sore wrist, finger and ankle joints. No matter how much training you have to roll with the fall, why do we always break our fall with sticking our hand out?! A year ago, these little wrist, finger and ankle annoyances would be gone overnight.....now a days, they hang on, and on, and on, and I swear, there is a magnet for immunotherapy inflammation at bruised joints.....
With Blessings and Gratitude, DFK
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RonH,
Sorry you're having to ride this one out....infection or fibrosis versus progression. You will be in my prayers for ZERO progression and complete resolution of pesky infection. That's my story and I'm sticking with it. Will be praying for a negative PET Scan and Biopsy and a positive outcome so you may get your own with #19 Durvalumab.
I've settled with my oncologist on every 4 week TSH and Cortisol lab draws. Yes, my labs have been normal t/o treatment but this immunotherapy really messes with your pituitary, which is the motherboard of a lot of hormones that control a lot of glands. So I'd rather be ahead of the game rather than playing Medical catch-up. We continued to do every 2 week TSH and Cortisol secondary to persistent weight gain of 1-2 lbs every two weeks. I've stabilized on my weight gain so we're pulling back on frequency of labs.
My Oncologist has told me that we're doing the full 26 doses despite going over the 12 month mark. I too missed two doses for pneumonitis. Barring any problems, I already have all of my appointments scheduled thru January to receive all 26 infusions.
Just a question as I am not familiar with when a CEA ( Carcinoembryonic Antigen) test would be indicated in lieu of CT findings?
Hang tight. Keep us posted. You are supported and understood here.
With Blessings and Gratitude, DFK
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Prednisone and Immunotherapy
I found this interesting.....and how far down the rabbit hole would you want to go? Prednisone usage is still being studied and tweaked to get that nice balance. I truly believe that we are the Trail Blazers that will help with the maximum efficacy of immunotherapy for future Durvalumab users while minimizing and addressing adverse events.
https://www.ascopost.com/issues/november-10-2018/corticosteroids-and-immunotherapy/
Thank you everyone for providing conversation and open dialogue.
With Gratitude and Blessings, DFK
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Tomm-Sorry for your extreme fatigue and I hope your oncologist has a useful and effective remedy for you.
Charles and Barb, thanks for low dose Prednisone recommendation....I have read some of your earlier postings about low dose steroids while receiving Durvalumab, not a bad idea if abatement of symptoms without losing effectiveness of Durvalumab can be obtained. An interesting concept, Prednisone suppresses our immune response and Durvalumab revs up our immune response. A balancing act. Wouldn't it be just grand if the great minds of science today can find that balancing act of cancer suppression using immunotherapy while integrating steroids to abate adverse events. And it's available and as common as Tylenol.........one can dream.
A few thoughts:
I am a hobby musician. I play the piano, guitar, ukulele and violin. A group of us Seniors would get together weekly to jam and occasionally do some gigs for friends, Care Homes and celebrations when invited. It's been a year since I've been on "sabbatical" from my music. Today I decided to drop in on a practice session. Hey, what's not to like about playing some music and whooping it up for a couple hours, then having a nice 2 hour lunch with friends. To cap off the day, attack this weeks shopping list, which included stops at 4 different stores.
Left the house at 7am and got home about 4pm. By 4:15, I was passed out cold from exhaustion. Woke up a couple hours later and felt a little loopy but got my mojo back. Then somewhere in my memory banks, I remember reading that tiredness can be slept off but fatigue cannot. Then I remembered how awful my chemo and radiation fatigue would stick to me like white on rice. And even though I could never sleep off my fatigue, I did allow myself daily naps (when able). Figured that maybe the naps wouldn't cure my fatigue but on some level, I knew I was gifting my assaulted body with healing rest.
Again Tomm, wishing you recovery and relief.
With Gratitude and Blessings, DFK
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Tomm
December-completed chemo and radiation treatments
January-First Cat Scan with contrast since diagnosis, 40% decrease in tumor, no progression, Durvalumab started.
April-Cat Scan without contrast done to chest for complaints of shortness of breath, diagnosis post radiation pneumonitis, Durvalumab on hold after 8 doses, tumor even smaller
May-Cat Scan without contrast done to chest, pneumonitis resolved, Durvalumab restarted, #9 dose. Tumor even smaller, barely perceptible.
My oncologist will not do another Cat Scan until I am done with 26 doses of Durvalumab, which will be in January (8 months from last Cat Scan). Of course, if I am symptomatic, appropriate imaging will be done. I am followed by my Pulmonologist and Cardiologist every 3 months and my Oncologist Radiologist every 6 months. This is strictly for monitoring.
I am still mulling over the idea of no surveillance imaging if without symptoms. My fears nag at me to be more insistent on every 3 month surveillance imaging, but my gut tells me I am fine. I have been blessed with stable chemo and radiation treatments as well as uneventful and stable Durvalumab infusions.
So as it stands now, 10 more Durvalumab infusions and no surveillance imaging, labs every two weeks prior to infusions.
Will update all to any changes.....we're all doing the "countdown".
With Blessings and Gratitude, DFK
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Hey Barb,
Congrats on #9.
I certainly understand #26 seemingly looking like the end of an endless hallway in an Alfred Hitchcock movie. And I also know that time marches on and we all will get to the finish line. So for now, during this surreal cancer life we have been dealt, let’s make the best of our today by focusing on just today. For me, today I will be designing and sewing potato bags and potholders for the Infusion nurses for Christmas with Netflix blasting in the background. Maybe I won’t t get far, but I also know that baby steps will get me closer to my Christmas goal and to my next infusion date......Baby steps Barb, we're doing it everyday. Give yourself a pat on the back for getting this far. A virtual hug from me to you too.
With Blessings and Gratitude, DFK
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Uneventful #16 infusion yesterday. All labs within normal parameters.
Repeat DLCO test at 64% today, up from 44% after pneumonitis in April. Don’t know if time and healing accounted for generous jump in DLCO value but I'd like to attribute it to my tenacity in starting an exercise program. Baby steps to wellness.....I'll take it.
Carry on everyone.
With Gratitude and Blessings
DFK
- Rower Michelle, Tom Galli, Charles and 3 others
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Tomm and Charles
Great on #9 done and TSH levels going south. If memory serves me correct, you, Charles and Ron H had high thyroid levels picked up later than sooner???
As Tomm has impressed upon all of us, TSH should be regularly monitored with treatments. I have TSH and Cortisol drawn every two weeks, some of my fellow infusers have them drawn every four weeks. Only when TSH is abnormal high, will T3 and T4 levels be done.
TSH-Thyroid stimulating hormone is secreted from your pituitary gland. TSH stimulates the thyroid to produce T4 (Thyroxine), a thyroid hormone. When your T4 is low ( a side effect of Durvalumab) the pituitary gland senses that and increases your TSH levels to produce more T4. You may still have a high TSH level but your synthroid medication is replacing your thyroxine (T4).......just a little FYI. For me, it helps to know some of this minutiae.
My fatigue seems to come and go and I can’t nail it to any particular day. Peaks and valleys so pacing myself works for me. My voice remains hoarse and I still lack pitch and volume. Been on Prilosec (for acid reflux) almost a month with no improvement in my voice. ENT referral for vocal chord evaluation not until November. I've taken it upon myself to discontinue my steroid inhaler that was prescribed for me after my pneumonitis diagnosis in May. A common side effect of inhalers are voice hoarseness and my inhaler is the only change in my regime since starting Durvalumab in January. I'm grasping at straws here but willing to eliminate the obvious. Getting #16 Durvalumab this coming Tuesday with DLCO pulmonary test. I've been pushing myself with exercise and even though I know that my lungs is not a muscle, I truly hope my pulmonary function has improved.....we shall see. Carry on.
With Blessings and Gratitude, DFK
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Good Tuesday evening to you all
Attached you will find response from AstraZeneca re: my query on imaging recommendation for best practice. I got back a lot of words but basically they do not have any recommendations while receiving Durvalumab but while in a clinical study, patients were scanned every 8 weeks. (TOMM) If receiving Durvalumab and progression is noted, Durvalumab is discontinued as it is deemed ineffective and your MD will determine your next best course of action.
LAUREL and CHARLES-Thanks for throat wash recommendations.
CHARLES- Thank you for being simpatico on wait time to see ENT specialist. It is a way of life here. And it pisses me off. I am still noodling if I will wait until November or ruffle a few feathers to get seen in a more timely manner. I pray that I am taken care of but I also know that action is sometimes warranted to get some proper and timely care. Congrats on #11, how wonderful to be on track.
TOMM- I spend my infusion time catching up on e-mails and texts or lunching with friends. An hour goes by pretty fast. But I cannot resist by sharing thatr I do have a playlist that I listen to when exercising and it consists of THE ROLLING STONES, VAN MORRISON, THE DOORS, JANIS JOPLIN, THE EAGLES, JEFFERSON AIRPLANE to name a few.....spirited music gets me thru a tough routine. To say that the PBS Woodstock 50th anniversary special was a hit with me is truly an understatement.
Take care everyone
With Blessings and Gratitude, DFK
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RonH
Well done with #18......I'm 3 behind you and doing okay except for the itchies.
BCJoe
Welcome.....I have gleaned great info on Durvalumab, anecdotal and scientific from this Forum. There are some real smart go getters here. Thank you everyone.
Barb1260
Thank you for your sentiments on the loss of my friends mother. What shocked me most was how quickly her prognosis went from "You can beat this" to “ You have a month to live".
Just a few thoughts:
Been having a hoarse voice, loss of pitch and volume for about a month now. Oncologist thinks I have acid reflux and a month of a proton pump inhibitor (Prilosec) should be our first course of action. It's been three weeks and I still sound like Minnie Mouse or gravely. Can't seem to get my normal voice back. Now he's thinking maybe vocal chord damage from radiation to my lungs. Finally got an ENT referral but no openings until November. Seems like an awful long time to wait for an evaluation, and a longer wait if any diagnostic testing. An acute shortage of Specialists seems to be a formidable barrier here......just saying
With Gratitude and Blessings
DFK
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Barb1260
The thing about the small weight gain of 15lbs......My son put me on a rowing machine and I asked him how long would it take to burn off those brownies I are with lunch....He told me an hour of rowing would do it......I jumped off after 5 minutes. No one should work that hard for a few brownies!! Looks like those 15lbs are here to stay.
Charles
Easy Peasy recipes I love.....my husband appreciated the change
Bob
Read the excellent book reviews on Amazon for THE EMPEROR OF ALL MALADIES. Thank you for the recommendation. The Ken Burns PBS film-Episodes 1, 2 and 3 are available for free if you are an Amazon Prime member: https://www.pbs.org/kenburns/cancer-emperor-of-all-maladies/episode-guide
Just a few thoughts
I lost my friends mother to pancreatic cancer. In mid April they told her she could beat it with chemotherapy and surgery. So she went ahead and had a stent put in her bliliary duct, had a port put in for infusions and started her chemotherapy in June. By July they told her she had a month to live. She passed last night. I don't know all that caused the sudden change in her prognosis but I do know that she became defeated and depressed with the diagnosis and never, not once expressed her will to live.....just saying
With Gratitude and Blessings
DFK
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Tomm,
I received a call back from AstraZeneca regarding my query on best practices for imaging while receiving Durvalumab. They needed a bit more information so while I had them on the phone, I threw out your question on PDL1 Biomarker noted progression while receiving Durvalumab and what is their recommended best practice. Just for edification, their responses are tied to their clinical trials. Will relay their responses as soon as I hear.
With Gratitude and Blessings
DFK
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21 hours ago, DFK said:
Tomm,
LOL, my insurance is called, “ Husband fortunate enough to work and retire from a company that provided retirement health coverage”. I know, I know, a complete rarity. We were and are very grateful.
RonH,
You are wealth of knowledge, thanks for sharing all of your experiences.
Charles,
Made your curry and followed your recipe to a tee (no habanero but our home grown red chilies are pretty darn close).....Stirred in fresh cilantro at the very end. A very easy and delicious dinner.....thank you.
To all current and future Durvalumab participants,
Just a few thoughts:
Tuesday was #15 infusion for me.....uneventful day. Currently, only side effect I have and am experiencing are the "itchies" which is maddening in this hot humid weather, but like others, a steroidal cream and an antihistamine makes life bearable. I have accepted, for the most part, my post radiation fibrotic lungs. I do what I gotta do and pacing myself works. Labs remain within normal parameters. My port after 9 months is fully functioning for labs and infusions. I get the best results from my EMLA numbing topical cream when I apply it 2 hours prior.
I maintained my weight during chemo (3) and radiation (30). Since starting Durvalumab, I have put on 15 pounds over the last 8 months. It is a significant change for me as I have maintained the same weight for the past 40 years. MD doesn't know what to make of it, was thinking maybe thyroid......I think the simplest explanation is that I have become a little piglet and am just eating more and not as active as I used to be.
I have always needed a sleep aide.....been on Ambien 6.25 ER over 20 years with excellent results. The past month, sleep eludes me despite the Ambien. My Kindle has been my best friend and I am knocking off those books that have been ignored. Makes me wonder if it's just me, or maybe an age related thing, or another quirky side effect of Durvalumab.....just saying.
I saw all the postings about the flu shot. Never have taken a flu shot but I received TB testing subcutaneously a week before Durvalumab infusion and again, a day after infusion......no adverse side effects noted.
With Gratitude and Blessings
DFK
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IMAGING GUIDELINES FOR CANCER SURVEILLANCE AND DURVALUMAB INFUSIONS
Good Thursday Morning to All,
For all who answered my query regarding imaging frequency, thank you very much. Hopefully it will be beneficial to current and future participants of Durvalumab.
Barb1260:
You included your insurance coverage of every 3 months for first two years, then every 6 months until 5 years. I can speak only of my insurance which is Medicare, there is no limit for coverage on the amount of imaging that is ordered…….BUT……it is billed under Medicare Part B, so you may have the additional co-pay costs, usually 20%. Fortunately I have a secondary insurance that covers all of my co-pays. Your frequency of Imaging seems to be par with others.
Bob
I am not familiar with Canada’s Medical coverage but your writings seem to indicate adequate and appropriate coverage for your cancer needs…..EXCELLENT.
Tomm
Your Clinic’s standard of care of every three month scans are on par with most Cancer Centers. I read your question of PDL-1, will Durvalumab be discontinued because of progression or new cancer. I came back with zero, nada, negative for any or all biomarkers but that is an excellent question. You may want to utilize the AstraZeneca (Biopharmaceutical Company that produces Durvalumab) support line at 1-800-236-9933. I have called them in the past with questions about Durvalumab that I could not find online or obtain from my medical team. They have been very helpful. If they cannot answer your query immediately, they will get back to you via phone or e-mail.
Ron H
I am sorry your TSH levels were not monitored until your levels were at 44. As I mentioned in a previous post, my Cancer Centers guidelines are TSH and Cortisol levels to be drawn every two weeks prior to Durvalumab infusions. Also, your thoughts and frequency on imaging tests: Cat Scans, Brain Scans and Pet Scans are again, par for the course. We have the old conundrum; is the cure worse than the disease? Radiation from these imaging tests are a long term concern that needs to be weighed against the value given.
Your post on Pulmonary Fibrosis, pulse oximeter etc. I will post later how DCLO (Diffusion Capacity Pulmonary Function Test) is your best ally with radiation fibrosis, pneumonitis, emphysema and COPD (to name a few). It’s a simple test. Most of us had it completed in our diagnostic pre treatment phase. But how many MD’s order a follow-up DCLO to measure pulmonary function after radiation? after pneumonitis? during Durvalumab treatments?
Ron H, Tomm, Bob, Opal and Tom
I do not have my pulse oximeter saturation checked in the clinic setting but I have had my own since my diagnosis. I use it to monitor my saturation pre and post exercise and strenuous activites. For example, I ride my bike and at times I push myself probably a little too hard so it helps to know how my lungs are perfusing when pushed. Pre bike ride I have a 98% saturation and 70’s heartrate. After 30 minutes of biking, my usual saturation is 95% with my heartrate in the 140-150’s. I ride for an hour but always do a pulse Ox check after 30 minutes. My pulmonologist and cardiologist are okay with those numbers. Trending my pulmonary function to activities and exercise will alert me to significant changes as a precursor to symptoms and problems…..let’s be proactive.
NCCN-National Comprehensive Cancer Network Imaging Guidelines
This is the Organization that my Cancer Center bases their care on.
“The NCCN develops resources that present valuable information to the numerous stakeholders in the health care delivery system. By defining and advancing high-quality cancer care, NCCN promotes the importance of continuous quality improvement and recognizes the significance of creating clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers around the world.”
I obtained this information from my Cancer Center when I inquired as to the best practice/standards of care for imaging surveillance after completion of initial cancer treatment. I also inquired if there are any specific guidelines once Durvalumab enters the picture. The NCCN does not have specific guidelines for Durvalumab so I have a return call pending from AstraZeneca.
Per NCCN Imaging Guideline Parameters for no evidence of disease:
Stage I-II (Treatment =surgery and chemotherapy) Chest CT +/- contrast every 6 months for 2-3 years then a low dose non contrast enhanced chest CT annually
Stage I-IV (Treatment=chemo and radiation) Chest CT +/- contrast every 3-6 months for 3 years then CT+/- every 6 months for 2 years then a low dose non-contrast enhanced chest CT annually
FDG PET/CT is currently not warranted in routine surveilllance for NSCLC however, many benign conditions are difficult to differentiate from neoplasm on standard CT imaging and FDG PET/CT can be used to differentiate true malignancy.
Brain MRI is not routinely indicated
DCLO-Diffusion Capacity Test
Diffusing capacity of the lungs for carbon monoxide (DLCO) is a medical test that determines how much oxygen travels from the alveoli of the lungs to the blood stream. DLCO a good measure of lung disease severity and how well your lungs are perfusing oxygen. The more surface area available to perfuse, the better your DLCO % is, the healthier your lungs are.
My DCLO pre chemo and radiation treatment in October of 2018 was normal at 77%. January, one month after chemo and radiation was completed I was starting to experience a higher than usual heartrate. I had no shortness of breath. In March, along with a higher than usual heart rate, I started to tire easily but still able to meet my responsibilities in the home. Because of my increased heartrate and tiring easily, a DCLO test was ordered and my result was a whopping 44%. A Cat Scan followed that revealed a Grade 3 pneumonitis. I had no symptoms that would have indicated a Grade 3 pneumonitis. Had it not been for the DCLO test, I might have progressed to a Grade 4 pneumonitis, been extremely symptomatic and been taken off Durvalumab permanently AND incurred much more fibrosis and damage to my lungs.
After a month of high dose Prednisone, I was able to restart my Durvalumab and my DCLO improved to 49%. I increased my exercise regime with the idea that I am maintaining my lung hygiene and hopefully improving my lung function. My next DCLO is in two weeks ( two months since my last). The doctors said my DCLO at 49% is about par after my 30 treatments of radiation and Durvalumab. I'm hoping I can improve my lung health....we'll see what the numbers will say.
With Gratitude and Blessings, DFK
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Good Tuesday Morning to All,
Question for all: Does your health care provider have a regular schedule for follow up Cat Scans? Brain Scans? PET Scans? Etc. Scans
I've read here that some of you get your Cat Scans every 3 months?
I'm a couple hours away from my labs, #15 Durvalumab and MD appt and I'll be finally asking my MD what is "his" standard of care for followup tests. I will report my findings later.
I received my 1st CAT SCAN, PET SCAN and BRAIN SCAN upon initial diagnosis in September of 2018. Since that time I have had a followup Chest Cat Scan with contrast in January 2019 after radiation and Chemo and again in April and May (without contrast) for my complaints of SOB which turned out to be Grade 3 pneumonitis. April Cat Scan was to diagnose pneumonitis and May Cat Scan was to clear me for restarting Durvalumab.
I'd appreciate your input.
I believe this info will be beneficial for current and future Durvalumab participants.
With Gratitude and Blessings, DFK
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The CHARLES CREED: I demand discipline. I expect innovation. My life and the success of killing my cancer depends on me - my skills in gathering information and attention to detail. My learning is never complete. I depend on my Medical team but I will never quit participating and learning. If knocked down, I will get up every time.....or as my 5 year old grandson would say to me, YOU GO GRANDMA!
With Gratitude and Blessings, DFK
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Charles,
You certainly are involved, enthused and motivated to participate in the healing of your cancer. Thank you for sharing.
My only experience with Cystic Fibrosis and NaCO3 nebulizer treatments, my understanding, was to minimize bacterial counts and assist in the removal of mucus. And of course, during resuscitation efforts, NaCO3 was given to combat metabolic acidosis during cardiac arrest. My personal experience with NaCO3.....I use a little every day with salt in a glass of water to rinse my mouth after brushing my teeth. Swish and gargle and spit and rinse with water again.....it has been proven to bring bacteria counts down in your mouth and I'm all for that.
It's intriguing what you are vested in, keep us posted as I'm sure you're journaling your methods and experiences.
Recipe looks killer and serve over rice? (my fav)......I am a die hard affectionado of Cajon, Indian and Puerto Rican food. The hotter the better, I don't use habernanro peppers but I have some pretty dynamite teeny red chili's that I just harvested yesterday.....they will grow hair on your chest for sure🥵 Bon Appetit.
Gratitude and Blessings to all, DFK
Durvalumab
in IMMUNOTHERAPY
Posted
Roseann, Welcome again, you found the Durvalumab Forum.....great.
Keep us updated on what your oncologist decides with reinitiating Durvalumab. I'm never quite sure what to make of all the annoying adverse events that we experience . Just to be on the safe side, I report everything and let my oncologist decide on further follow thru. I did have two doses of Durvalumab held for pneumonitis 3 months into treatment. I actually argued with my doctor and said my cancer should have priority and I do not want to have my Durvalumab held, let’s ride this one out since I'm only a little short of breath and just a little compromised. Well, he looked at me and said, "Nope, your lungs take priority today".....I actually enjoyed the month off. Symptoms abated and I actually felt kinda human for a few weeks!
Let your body heal and yes, stay in the light. And as Tomm put it so eloquently, believe in your future.
Kate, welcome. Tom Galli provided some really good pointers to get you thru this waiting period...lot of food for thought. No easy answers for sure for how do you manage chaos and uncertainty without going off the rails? Nausea sucks, fatigue, I think we're all experts at pacing ourselves. Who thought doing a simple load of laundry would require three pit stops before hitting the washing machine but life goes on, and that's the beauty Kate, life is going on for all of us. We are adapting and you will get thru this next week as you ponder the results. Stay in the light, have faith in hope. And I again quote Tomm, believe in your future.
RonH-Damn, that was a long and rough day but glad you're one step closer to results. I haven't had a needle biopsy and thru your description, despite not feeling any pain, it sounds pretty darn horrific. Rest well. We're all pulling for you. You're in my prayers and are remembered as I say goodnight in my healing corner.
Barb-#11 on Thursday......moving forward...WoooooHooooo. Gloves back on. Did I miss reading what plans are in store for your mystery 5mm nodule?
Take care everyone, Prayers to all, thank you Tomm, we are firm believers in our future.
With Blessings and Gratitude,
DFK