Tom Galli Posted December 11, 2019 Share Posted December 11, 2019 DFK, Simply superb news! Stay the course. Tom DFK 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted December 11, 2019 Share Posted December 11, 2019 Yay!!! DFK 1 Link to comment Share on other sites More sharing options...
Rower Michelle Posted December 11, 2019 Share Posted December 11, 2019 DFK- A big KC Whoo hoo for nearing the finish line of Duva as NED. Outstanding! Opal and DFK 1 1 Link to comment Share on other sites More sharing options...
Opal Posted December 12, 2019 Share Posted December 12, 2019 DFK.....Wonderful wonderful news! On NED! AND Congrats on nearing the infusion finish line. Welcome to the club. I think I read your post a few pages ago that you had no PDL nor mutation?? Same here. Well how about that! Nix all the writings that one must have PDL and a mutation for Durva. Just want to say your posts have been most informative and tremendously helpful. Reading quite a few, I said to myself, OMG that's me, sans the voice changes. Side effects, weight gain, beliefs, treatment and boring infusions all so so similar. Your posts were quite comforting for me, thank you! Sending you all good wishes and many prayers. Hugs, Opal. DFK, Sillycat1957, Rower Michelle and 1 other 3 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted December 18, 2019 Share Posted December 18, 2019 Hey! Are all us Durvas feeling so good we’re running around doing holiday preps? No posts for a solid week. I’m going to take that as a good thing!!🥳 Curt, Tomm, Rower Michelle and 2 others 4 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted December 19, 2019 Share Posted December 19, 2019 CT results compared to a year ago-from 6.8x5.8 to 2.8x1.9cm. The 5mm found in Sept on left lung is now 2mm. Nothing new. I guess this expensive stuff is working. Happy Holidays!!!! DFK, Tomm, Rower Michelle and 2 others 5 Link to comment Share on other sites More sharing options...
DFK Posted December 19, 2019 Share Posted December 19, 2019 Wonderful news Barb 1260. Now that's a very special Merry Christmas to you. Relish in your good news and enjoy the Holidays. Take Care, DFK Barb1260 and Sillycat1957 2 Link to comment Share on other sites More sharing options...
BridgetO Posted December 19, 2019 Share Posted December 19, 2019 Glad to hear that, Barb! I hope Santa and Durva bring you more shrinkage. DFK and Barb1260 2 Link to comment Share on other sites More sharing options...
Barb1260 Posted December 19, 2019 Share Posted December 19, 2019 Hopefully it’s all dead but will have to wait for PET in March. Another fight with the insurance company. They hate to approve PETS. I told the onc to lie to get it approved if she has to. DFK 1 Link to comment Share on other sites More sharing options...
RonH Posted December 19, 2019 Share Posted December 19, 2019 I have been meaning to provide an update of my latest scan, but busy busy at work and dealing with the holidays, plus I am trying to figure out a new "high efficiency" clothes washer that is apparently smarter than I am. Just too many choices and buttons to push! The results from my latest CT were somewhat inconclusive after my first 6 weeks on Alectinib (Targeted Therapy for ALK+ NSCLC). The primary tumor showed a slight decrease in size with most everything else appearing to be "grossly" stable. (Got to love medical terminology). I did develop some localized air bronchograms and a small pleural effusion. The one small lymph node that lit up on the most recent PET scan was now "obscured". The Radiologist also pointed out an area of either post radiation pneumonitis or possibly pneumonia. My Med ONC believes it to be a slight case of pneumonia so I am now also on antibiotics for 10 days. I had contacted the Onc before the CT letting him know that I had a cold (sore throat, runny nose, sneezing and chest congestion, but he wanted me to proceed with the CT anyway. After 1 week now on antibiotics, I can feel an improvement in my shortness of breath (plus being over the cold helps). I guess that I will take the small reduction in primary tumor size, along with being mostly stable elsewhere as a good result. Have to go back in early January for a chest x-ray to check on things and get updated blood tests as after 7 months of induced hypothyroidism, the Med Onc is still slowly adjusting my thyroid hormone dosage upwards. All other blood tests were in the normal range, or near it. Hope all have a wonderful holiday season. ~Ron DFK and Sillycat1957 2 Link to comment Share on other sites More sharing options...
DFK Posted December 19, 2019 Share Posted December 19, 2019 Happy Holidays Ron, Yes, our new high efficiency washer almost landed in our compost pile....my husband did not like the huge learning curve associated with such little water and twice as long cycles. Good luck on figuring out what works best for you. We've had ours for a year and we still can't get it wired. As I read your post, I was impressed with the detail your radiologist put into it. Broken down, you have your bases covered. And yes, in medical terminology, "grossly" is a very good thing....."flagrantly" or "obviously" are two adjectives that I was taught to substitute for grossly. You're doing good.....congrats. Happy Holidays, DFK RonH 1 Link to comment Share on other sites More sharing options...
Sillycat1957 Posted December 20, 2019 Share Posted December 20, 2019 Hey all! Guess I'm the Durva baby here! Just had my 9th infusion on Monday, still plugging along. Have to say my Neurologist was absolutely on the mark, with putting me on Gabapentin, I take now 900 mgs at nite before I go to bed, no more middle back pain Yay! I have no more feelings of foot or hand neuropathy in my hands and feet Yay! Pretty much off the Oxycodone, I tried to just stop, but my body said no way, nope so I had to cut them in half first, now I take half every other day, I guess being an opiate you can't just stop. Oh well. TSH levels are good, WBC/RBC are good all in all no complaints today. Thank you Jesus! DFK and RonH, Gotta love those new HE washers, beside being a Custom Windows associate, my job decided that our time as associciates would be better utilized if we also sold Appliances and Mattresses! Mind you, that was a joke as far I was concerned. I had extensive training, but still steered customers towards the older type, unless they were sure to purchase an extended warranty. Because they are notorious for the motherboard malfunctioning after the mfg warranty expires in 1 year. any type of liquid spill, turns it to pooh! They are so hard to program as well. I had customers come in, so upset, wanting to take a hammer to it LOL! I couldn't help them even with all the training I had, they are worse than your smartest smart phone! Thank goodness we got rid of appliances at our store! And Great news on everyones' scans Tis the Season to be Jolly Wishing everyone a Very Merry Christmas!!! ☃️ RonH, DFK and Tom Galli 3 Link to comment Share on other sites More sharing options...
DFK Posted December 20, 2019 Share Posted December 20, 2019 Merry Christmas Sillycat, Great news on the Gabapentin, just wonderful. Food for thought in getting a Neurologist onboard as part of the Oncology team. If you've had radiation treatments to your lungs, odds are you'll have thoracic nerve pain. And some of the Platinum based chemotherapy can initiate some pretty mean neuropathy to hands and feet. Thanks.....I would not have gone in that direction, but will keep Neurology info on the shelf for future reference. Also great to hear your infusions have settled and all is as stable as can be expected. We have much to be grateful for as this year comes to a close. To all my online supporters here, thank you and wishing you all a very Merry Christmas and the Happiest AND Healthiest New Year.....we can do this, we are doing this. Take Care, DFK Rower Michelle and RonH 2 Link to comment Share on other sites More sharing options...
Barb1260 Posted December 24, 2019 Share Posted December 24, 2019 Merry Christmas and happy new year to my fellow Durvas. May 2020 bring us all to NED if not there already!!! 🎄 Curt, DFK, Opal and 1 other 4 Link to comment Share on other sites More sharing options...
DFK Posted January 1, 2020 Share Posted January 1, 2020 Wishing you all a very Happy and Healthier 2020.....We’ll remember the turbulence of 2019 but will let the year die for the rebirth of 2020. Take Care, With much love and gratitude, DFK RING OUT, WILD BELLS by Alfred Lord Tennyson - 1809-1892 Ring out, wild bells, to the wild sky, The flying cloud, the frosty light: The year is dying in the night; Ring out, wild bells, and let him die. Ring out the old, ring in the new, Ring, happy bells, across the snow: The year is going, let him go; Ring out the false, ring in the true. Ring out the grief that saps the mind For those that here we see no more; Ring out the feud of rich and poor, Ring in redress to all mankind. Ring out a slowly dying cause, And ancient forms of party strife; Ring in the nobler modes of life, With sweeter manners, purer laws. Ring out the want, the care, the sin, The faithless coldness of the times; Ring out, ring out my mournful rhymes But ring the fuller minstrel in. Ring out false pride in place and blood, The civic slander and the spite; Ring in the love of truth and right, Ring in the common love of good. Ring out old shapes of foul disease; Ring out the narrowing lust of gold; Ring out the thousand wars of old, Ring in the thousand years of peace. Ring in the valiant man and free, The larger heart, the kindlier hand; Ring out the darkness of the land, Ring in the HOPE that is to be. ( I took a little liberty and substituted HOPE for Christ) Sillycat1957, Tom Galli and BridgetO 3 Link to comment Share on other sites More sharing options...
Barb1260 Posted January 1, 2020 Share Posted January 1, 2020 Happy New Year 🥳 Opal, Tom Galli and DFK 3 Link to comment Share on other sites More sharing options...
Barb1260 Posted January 2, 2020 Share Posted January 2, 2020 17 done, 9 to go. My joints are achy. Back on Aleve, wonder if my kidneys or liver will give out first. I’m determined to get to #26! DFK and Tom Galli 1 1 Link to comment Share on other sites More sharing options...
Opal Posted January 3, 2020 Share Posted January 3, 2020 Barb, You can do it!! You're almost at the finish line. As for achy joints, #17 was about the time the joints started hurting, and getting pretty stiff. Right now I'm 2 months done and the stiff joints come and go, really nothing like they were...something to look forward to, so I attribute it to age and I need to exercise. Stay positive and Jersey strong. Opal Barb1260, DFK and Rower Michelle 3 Link to comment Share on other sites More sharing options...
Rower Michelle Posted January 3, 2020 Share Posted January 3, 2020 Eyes on the prize Barb! You got this! DFK, Barb1260 and Tom Galli 3 Link to comment Share on other sites More sharing options...
DFK Posted January 3, 2020 Share Posted January 3, 2020 Hi Barb, Like Opal and Michelle stated, you got this. Yesterday I gathered all my notes since I was diagnosed and I was surprised at how far back my "complaints" of headaches, joint pain, chest muscle pain, back pain and fatigue went. In my daily journaling, most of my notes reflected symptom control with medications. I suppose, symptom control is high up there on the list as we head towards the finish line. That with a ton of patience and mental fortitude and a twisted sense of humor.......we are doing this together. I get your worries about your kidney and liver with ibuprofen......I've been taking Motrin prescription strength 800mg tablets. One tablet seems to knock out all my ills for the day but I do alternate it with ES Tylenol. So I too am always very interested in my lab values as well as any possible tummy issues....so far, so good. Carry on Barb, I'll be joining Opal soon and we both will be waiting for you at the Durvalumab finish line. We’ll also be cheering on Tomm, Charles and SillyCat..... Take Care, DFK Rower Michelle, Opal, Barb1260 and 1 other 4 Link to comment Share on other sites More sharing options...
Barb1260 Posted January 3, 2020 Share Posted January 3, 2020 Never had anything except dry skin until last night. It felt like pin pricks all over. Is this the “itch”? Took Benadryl - it helped but this morning still a little itchy. Sillycat1957 and DFK 1 1 Link to comment Share on other sites More sharing options...
DFK Posted January 3, 2020 Share Posted January 3, 2020 Hey Barb, All my itchies were related specifically to a rash, most prominently on my back area where I had my radiation. This rash erupted about a month or two into my Durvalumab infusions. I treated it with Prescription Hydrocortisone, and Doc did mention taking an OTC antihistamine if needed. Itchies still comes and goes as it pleases to my back radiation area though no recurrent rash. Not sure if your pin pricks feeling is the same of what I experienced but I did have a needles and pins sensation on all my extremities that the doctors related to my extreme stress when I was diagnosed and running on the rat wheel of tests and procedures. Docs called it temporary paresthesia. They prescribed Klonopin 0.5mg for my "panic" and "anxiety" responses. This sensation never itched but it sure feels out of this world weird. It's one thing to have a hand or foot experience that needles and pins sensation like it fell asleep, but your whole body....it was a strange symptom. The Klonopin helped, in the category of benzodiazepines like Xanax, Ativan, and Valium. Just kinda goes back to my daily journaling where I noticed some of my days were totally consumed by symptom management with my arsenal of medications. This coming from a gal who never had any prescribed medications or medical problems until NSCLC. Anyone out there in Durva land needed any invasive dental work while receiving immunotherapy? I've been to my dentist per usual every 6 months for cleaning, but couple weeks ago, one tooth decided to get a little fussy. I was evaluated this past Monday and I have an abscess, am on antibiotics and scheduled for a root canal on the same day as my Durvalumab infusion.......I have a FYI call into my oncologist to see if my dental work is contraindicated with Durvalumab infusion. Haven't heard back from him so I plan on proceeding with my endodontist appointment.....pain is great motivator. Take Care, DFK Link to comment Share on other sites More sharing options...
Tomm Posted January 3, 2020 Share Posted January 3, 2020 #19 infusion yesterday, no side effects and onc asked me to stay boring. Still taking some CBD tincture in the day and THC tincture at bedtime. Sorry to hear some are dealing with side effect but it sounds like we are all getting the best care with onc that know how to help. Happy New Year Durvas!! .. the best is yet to come, it's not to soon to plan your garden Rower Michelle, DFK and Barb1260 3 Link to comment Share on other sites More sharing options...
Barb1260 Posted January 3, 2020 Share Posted January 3, 2020 At this point I’m blaming Imfinzi for every ache, pain, itch that I have that all come and go. Sorry about your tooth, it is a pain trying to figure out what can and can’t be done while on this. DFK 1 Link to comment Share on other sites More sharing options...
DFK Posted January 4, 2020 Share Posted January 4, 2020 Tomm, Good to hear you're beautifully boring and that CBD and THC is helping you to the finish line. Well done. Barb, Yup, we know our bodies better than anyone. Getting shuffled from chemo and radiation to Durvalumab makes all of them suspect and a perfect scapegoat for all of our ills. I was told at the beginning of my treatment what was in store for me but who in their right mind can even begin to fathom the immense toll, both physically and emotionally, our diagnosis and treatments involved. We’ve adapted well, by participating and going forward with our treatment plan. Hope remains primary and integral for a curative goal and a return (somewhat) to our lives. I love the idea that as long as we are "living" we need to live fully and gratefully. That's where my arsenal of coping and medications come in. Keeping it real and doable. Take Care, DFK Sillycat1957 1 Link to comment Share on other sites More sharing options...
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