RonH

Happy Sunday to all,
Joe-Good to hear from you. Is my tumor gone? I suppose, since a PETSCAN measures uptake, then in that sense my tumor is "gone" since there is no SUV reading. I was also told by my Pulmonologist that I will have scar tissue where my tumor was. Now, on my CatScans, over the course of a year, you can definitely see the large tumor at diagnosis and subsequent scans show a smaller and smaller mass until the last cat scan showed no mass at all. So again, my tumor is "gone". I have a high probability of developing pneumonitis and/or pulmonary fibrosis where I was radiated. Pulmonary function tests will show how effective my lungs are functioning and how much pathology has taken place because of the radiation. I did develop Pneumonitis 4 months post chemo/radiation or 3 months into Durvalumab. This was treated by one month of high dose Prednisone and one month OFF of the Durvalumab. I included the little "blurb" of 3 years after diagnosis, if you are still in remission, it is probably due to the immunotherapy's success in training my lymphocytes to recognize and kill my cancer cells. My oncologist was very adamant in saying it is much to early to tell if my NED or remission is due to immunotherapy. My oncologist, when questioned about the efficacy of chemo/radiation never fails to tell me how I always have cancer cells circulating in my body, and how conditions have to be right for a tumor to start. Then he throws in the Carl Sagan billions and billions of cells are needed to make up a tumor. Lovely!  I started my Durvalumab treatments January 2019 and completed 26 doses January 2020. Though catscans throughout my treatment always showed my tumor decreasing in size, this PETSCAN done one month after my last Durvalumab confirmed my tumor is "gone". Surveillance scans in the future will be where the rubber meets the road.
Opal-Thank you for your kind and encouraging words. I am disheartened to hear of the challenges you have been experiencing caring for your husband. Please know that you and your husband will be in my daily prayers. I wish for you a clean scan and for your hubby, a resolution to his pain and forward movement to his chemo.
Kate-You are a survivor and I love that you are still swinging at bat despite your many challenges. Taking off the brakes on your immune system does wreck havoc on your body, no question. Your adverse response started early on which was very disconcerting for sure.  Good luck on your PETScan coming up in a few weeks. Not tolerating the Durvalumab has put you without any treatment? I'd be interested to know, after all this doctor hopping and smoothing out the wrinkles that Durvalumab brought on, what, if any treatment will your new oncologist recommend? 
Ron-Thank you for such a detailed and heartfelt update. My sense of it all is that you're hanging tough, taking the hits, making adjustments and carrying on. Admirable. Very good point you make about Durvalumab having an end point and is given with a curative intent whereas your TKI is a maintenance drug that has no end point unless it fails.  That’s a lot to wrap your head around. It never ceases to amaze me how much, as cancer patients, we are asked to shoulder, and adjust...again and again and again. Resiliency prevails and I suppose that is a good thing for us. The decision to retire is a tough one.....I wish you an easy road in making that a reality should you want that route.
Georgia-Did your husbands skin sensitivity resolve? 
Tomm- Thank you for the link and recommendation for Saturday Market in Eugene.....sounds like a fun place to hang. I especially love the artwork that comes out of "Oregon". I went to school in Corvallis and frequently visit a gal pal in Portland. Love the Pacific Northwest area and we are looking at trains, planes and automobiles for upcoming vacay.

I was having a bad day so I bought a bottle of vodka, gin and whisky and put them in an elevator and sent them to the top floor. I didn’t have a good reason. I just needed something to lift my spirits.
Take Care All and I ditto Ron....very well wishes to all as we navigate....... DFK

🙏 Opal - You and your hubby will be in my thoughts and prayers. 🙏

DFK - Thank you for inquiring. And congratulations on the NED. Enjoy your west coast vacation, you deserve it!
Yea, I am still lurking about and checking on the Durva Club members and keeping all of you in my thoughts. I've been kind of silent with nothing new to post but do read every posting in this Durvalumab group. So happy the read of some of the NED results with the Durvalumab treatments. I see there are a few new members here so welcome to them from a former Durvalumab patient with 18 infusions under my belt until after having a reoccurrence and one new local lymph node involvement and then finding out that I was PDL-1 Neg and ALK+ (confirmed CT/PET/Lung Needle Biopsy/EBUS). From what I understand, since there was no progression elsewhere I am still classified as a Stage 3A. 
As I reported last December, after 6 weeks of being switched from Durvalumab to a TKI (ALECENSA - [Alectinib]) due to the ALK+ mutation, the December CT had indicated a possible small effusion and a possible slight case of pneumonia at which time I was placed on antibiotics. At the begining of January I had a X-Ray to check on that which resulted in the radiologist reporting no changes to the malignancy, but also no indications of an effusion or pneumothorax. I am scheduled for my next CT in early March. 
It is still a struggle to get my ONC to remember to order Thyroid tests along with the other monthly blood tests/port flush. After reminding him last month that I likely still had elevated TSH levels and being told that that it had dropped off the radar, it was finally tested again several weeks ago, with a TSH level result of 16. It's been almost a year now of slowly increasing my dosage of Tirosint (Synthroid) and I've only dropped from a high of over 44, down to 16. Getting more than a little impatient with the slow pace of treatment, but at least my T4 levels have just now risen back up into the normal range. His opinion was that the TSH level is trending in the right direction. My response was that I would hope so since it has been nearly a year! My latest "discussion" with him was why he has never, not even once, had my CPK levels checked. He started to say it wasn't necessary until I whipped out the info sheet on ALECENSA which states that it should have been checked. Long story short, it now WILL BE checked in early March. With the cost of the Alecensa, I hit both my yearly deductible and yearly max out of pocket within the first two weeks of January, so I told him that I was having this and any other test medically justified test that I wanted whether it was there or through my PCP. One thing that I've learned from all of this is that you have to learn as much as possible from others (like in this forum) and then advocate for yourself. 
I do have to say, although I, like many of you, I suffered through some of the many side effects of Durvalumab, but I can also say that the side effects of the Alecensa are no picnic either. Other than taking 8 capsules a day, primarily my main complaints are with the constant fatigue and shortness of breath after any exertion at all. Of course the weight gain side effect also doesn't help either of those issues either. I am becoming very impatient about getting the results of my next CT as I am curious if this TKI (at about $15K per month) is helping or not. Unfortunately unlike Durvalumab, Alecensa is not a possible cure as it only delays progression for some people until such time that the beast mutates again and finds a way around that medication. I guess luckily when that time comes, there is a third generation TKI now available that works even better for many patients. I guess we'll see.
In other matters, I am still working full time, but giving either retirement or going out on sick leave and then LT disability some consideration for this year. I probably will if I progress over to Stage 4. I don't mind the work (office work) except for maybe working with some of the millennials, but I dread the walk between our parking garage and our office building everyday. By the time I get there I am huffing and puffing excessively at which times it takes 10 minutes to start breathing normally and my heart rate to return to normal. Decisions decisions….
I am sending well wishes to everyone here.
Till next time...take care and continue to fight the fight! My thoughts are with each and every one of you.
RonH

DFK - Thank you for inquiring. And congratulations on the NED. Enjoy your west coast vacation, you deserve it!
Yea, I am still lurking about and checking on the Durva Club members and keeping all of you in my thoughts. I've been kind of silent with nothing new to post but do read every posting in this Durvalumab group. So happy the read of some of the NED results with the Durvalumab treatments. I see there are a few new members here so welcome to them from a former Durvalumab patient with 18 infusions under my belt until after having a reoccurrence and one new local lymph node involvement and then finding out that I was PDL-1 Neg and ALK+ (confirmed CT/PET/Lung Needle Biopsy/EBUS). From what I understand, since there was no progression elsewhere I am still classified as a Stage 3A. 
As I reported last December, after 6 weeks of being switched from Durvalumab to a TKI (ALECENSA - [Alectinib]) due to the ALK+ mutation, the December CT had indicated a possible small effusion and a possible slight case of pneumonia at which time I was placed on antibiotics. At the begining of January I had a X-Ray to check on that which resulted in the radiologist reporting no changes to the malignancy, but also no indications of an effusion or pneumothorax. I am scheduled for my next CT in early March. 
It is still a struggle to get my ONC to remember to order Thyroid tests along with the other monthly blood tests/port flush. After reminding him last month that I likely still had elevated TSH levels and being told that that it had dropped off the radar, it was finally tested again several weeks ago, with a TSH level result of 16. It's been almost a year now of slowly increasing my dosage of Tirosint (Synthroid) and I've only dropped from a high of over 44, down to 16. Getting more than a little impatient with the slow pace of treatment, but at least my T4 levels have just now risen back up into the normal range. His opinion was that the TSH level is trending in the right direction. My response was that I would hope so since it has been nearly a year! My latest "discussion" with him was why he has never, not even once, had my CPK levels checked. He started to say it wasn't necessary until I whipped out the info sheet on ALECENSA which states that it should have been checked. Long story short, it now WILL BE checked in early March. With the cost of the Alecensa, I hit both my yearly deductible and yearly max out of pocket within the first two weeks of January, so I told him that I was having this and any other test medically justified test that I wanted whether it was there or through my PCP. One thing that I've learned from all of this is that you have to learn as much as possible from others (like in this forum) and then advocate for yourself. 
I do have to say, although I, like many of you, I suffered through some of the many side effects of Durvalumab, but I can also say that the side effects of the Alecensa are no picnic either. Other than taking 8 capsules a day, primarily my main complaints are with the constant fatigue and shortness of breath after any exertion at all. Of course the weight gain side effect also doesn't help either of those issues either. I am becoming very impatient about getting the results of my next CT as I am curious if this TKI (at about $15K per month) is helping or not. Unfortunately unlike Durvalumab, Alecensa is not a possible cure as it only delays progression for some people until such time that the beast mutates again and finds a way around that medication. I guess luckily when that time comes, there is a third generation TKI now available that works even better for many patients. I guess we'll see.
In other matters, I am still working full time, but giving either retirement or going out on sick leave and then LT disability some consideration for this year. I probably will if I progress over to Stage 4. I don't mind the work (office work) except for maybe working with some of the millennials, but I dread the walk between our parking garage and our office building everyday. By the time I get there I am huffing and puffing excessively at which times it takes 10 minutes to start breathing normally and my heart rate to return to normal. Decisions decisions….
I am sending well wishes to everyone here.
Till next time...take care and continue to fight the fight! My thoughts are with each and every one of you.
RonH

DFK - Thank you for inquiring. And congratulations on the NED. Enjoy your west coast vacation, you deserve it!
Yea, I am still lurking about and checking on the Durva Club members and keeping all of you in my thoughts. I've been kind of silent with nothing new to post but do read every posting in this Durvalumab group. So happy the read of some of the NED results with the Durvalumab treatments. I see there are a few new members here so welcome to them from a former Durvalumab patient with 18 infusions under my belt until after having a reoccurrence and one new local lymph node involvement and then finding out that I was PDL-1 Neg and ALK+ (confirmed CT/PET/Lung Needle Biopsy/EBUS). From what I understand, since there was no progression elsewhere I am still classified as a Stage 3A. 
As I reported last December, after 6 weeks of being switched from Durvalumab to a TKI (ALECENSA - [Alectinib]) due to the ALK+ mutation, the December CT had indicated a possible small effusion and a possible slight case of pneumonia at which time I was placed on antibiotics. At the begining of January I had a X-Ray to check on that which resulted in the radiologist reporting no changes to the malignancy, but also no indications of an effusion or pneumothorax. I am scheduled for my next CT in early March. 
It is still a struggle to get my ONC to remember to order Thyroid tests along with the other monthly blood tests/port flush. After reminding him last month that I likely still had elevated TSH levels and being told that that it had dropped off the radar, it was finally tested again several weeks ago, with a TSH level result of 16. It's been almost a year now of slowly increasing my dosage of Tirosint (Synthroid) and I've only dropped from a high of over 44, down to 16. Getting more than a little impatient with the slow pace of treatment, but at least my T4 levels have just now risen back up into the normal range. His opinion was that the TSH level is trending in the right direction. My response was that I would hope so since it has been nearly a year! My latest "discussion" with him was why he has never, not even once, had my CPK levels checked. He started to say it wasn't necessary until I whipped out the info sheet on ALECENSA which states that it should have been checked. Long story short, it now WILL BE checked in early March. With the cost of the Alecensa, I hit both my yearly deductible and yearly max out of pocket within the first two weeks of January, so I told him that I was having this and any other test medically justified test that I wanted whether it was there or through my PCP. One thing that I've learned from all of this is that you have to learn as much as possible from others (like in this forum) and then advocate for yourself. 
I do have to say, although I, like many of you, I suffered through some of the many side effects of Durvalumab, but I can also say that the side effects of the Alecensa are no picnic either. Other than taking 8 capsules a day, primarily my main complaints are with the constant fatigue and shortness of breath after any exertion at all. Of course the weight gain side effect also doesn't help either of those issues either. I am becoming very impatient about getting the results of my next CT as I am curious if this TKI (at about $15K per month) is helping or not. Unfortunately unlike Durvalumab, Alecensa is not a possible cure as it only delays progression for some people until such time that the beast mutates again and finds a way around that medication. I guess luckily when that time comes, there is a third generation TKI now available that works even better for many patients. I guess we'll see.
In other matters, I am still working full time, but giving either retirement or going out on sick leave and then LT disability some consideration for this year. I probably will if I progress over to Stage 4. I don't mind the work (office work) except for maybe working with some of the millennials, but I dread the walk between our parking garage and our office building everyday. By the time I get there I am huffing and puffing excessively at which times it takes 10 minutes to start breathing normally and my heart rate to return to normal. Decisions decisions….
I am sending well wishes to everyone here.
Till next time...take care and continue to fight the fight! My thoughts are with each and every one of you.
RonH

🙏 Opal - You and your hubby will be in my thoughts and prayers. 🙏

DFK -
You are quite correct that there is a concern about all the radiation we receive from both the radiation treatments and all the scans we had and will have. It’s well known that radiation can/will do damage and can cause cancer, so as my Onc puts it, they try their best to “cause no harm” with  their treatments and not do more than they feel necessary to treat your condition. Back in the 70’s while in college, I took all of my technical electives in Nuclear Engineering courses, including “Nuclear Safety” and then while an Army Officer, I received training in Nuclear, Biological and Chemical warfare defense, so radiation safety has always been a subject that I followed. Of course back in my days the radiation was measured in terms of RADS, REMS and SIEVERTS, not “GRAYS”. Last year when the Radiation Onc first mentioned how many “Grays” I was going to receive, I thought WTF, why is she discussing “Grays” which to me was a type of alien visitors from another world. (But that is a subject for another day in a different forum). Anyway, once I learned more about the current Gray (Gy) units of radiation measurement I thought Wow, that is a lot of radiation to be exposed to and absorb, and is that really safe at all? But in the end I came to the realization and conclusion that it would be better (in my opinion) to fight my current cancer with the radiation as the medical experts prescribe and not to be overly concerned or paranoid about the possibility of maybe getting cancer in the future from the radiation. I still want to be aware of what is going on and be an active participate in making “informed” decisions about my treatments, but I also understand there is always a “risk verses potential benefit” in just about everything we do. <-- My philosophical thoughts for the day.
Bob -
As it just so happened, I had purchased a bottle of the Biotène Dry Mouth Oral Rinse  (Mint Flavored) last weekend but hadn’t opened it yet. This morning I did, and it does help. As I was writing this about 3 hours later, and after 3 bottles of water and one cup of coffee, my mouth still felt better. A little dry, but not “bone dry” like most days. Thanks!
Tom G - 
You asked if I have been or am being treated by a Pulmonologist: The short answer is yes. The longer answer is that I was tested in depth about 6.5 years ago after my heart attack. The testing did not reveal any significant pulmonary issues with capacity, etc. other than “mild” COPD. However as part of all the post event diagnostics I also went through a sleep study and was then diagnosed with moderate to severe obstructive sleep apnea. I was prescribed a CPAP to wear at night and have worn it every single night since. My EP Cardiologist warned me not to even to take a nap without it on and I am to the point now where I can’t even doze off without it being on. Although a pain to wear, and it took about 6 months to acclimate to using it, I sleep so much better with it now. Since a prescription is required to obtain replacement supplies for the various parts of the CPAP, I have a yearly check-up with my Pulmonologist. However other than taking a few vitals, asking a few questions, and listening to my heart and lungs, from him it’s usually “thanks for coming in, lose some weight, continue with the CPAP, see you next year and here is my bill”.  For my cancer, I did have another Pulmonologist do the EBUS procedure and then later do a follow-up  bronchoscope, but I am not being treated by one for anything specific right now. Nor have I had any pulmonary tests performed just before or during my chemo, radiation or immunotherapy. Once it was confirmed that I had Stage 3A NSCLC, it was goodbye Thoracic Surgeon, hello Medical and Radiation Oncologists and I started ChemoRadiation treatments almost immediately. In fact at the advice of my Med ONC, I cancelled a family vacation to Florida that was scheduled 2 weeks from then so I could start my treatments as soon as possible.  According to my ONC, a 3 week delay in starting cancer treatments is a very long time and such a delay that should avoided if at all possible. So I took his advice and cancelled the trip but sincerely hope that in the long run that those 3 weeks were worth missing my father’s 90th birthday celebration. But I am still here and have visited him several times since, so all is good. Also for those that may be curious, yes I was a former smoker from the age of ~26 till I was 56. My last cigarette was on the day of my heart attack back on September 6, 2012.
           Update: My new O2 Oximeter arrived today. It is indicating 96% SpO2, not great, but much better than I had expected. (Accuracy range = +/- 2%)
Opal -
My very first side effect to the Durvalumab was a moderate rash and itching on back, chest, upper arms and most of all, lower legs. There was even a few days where the bottom of my feet itched. Scratching and tickling yourself at the same time just seemed plain wrong! 😄 The rash went away when I was pulled off of Durvalumab last December for about 5 weeks due to my temporary elevated liver function test results. After I resumed treatments in January there was no more rash but the itching returned, but at a less severe level. As I mentioned in a previous post, a Benadryl (Diphenhydramine) allergy tablet at night and a Claritin (Loratadine) tablet in the morning (both OTC) seems to help me some with the itching or at least makes it bearable and some days unnoticeable. This was at the suggestion of my ONC so I have added those two pills to my daily pill intake.
Charles -
Still waiting for my pH test strips to show up from Amazon. Thanks for the advice. Since I am not an Amazon Prime member, in order to receive free shipping I also ordered "11 Parameter 
Urine Reagent Diagnostic Test Strips", for the detection and screening of "Leukocytes, Blood, Specific Gravity, Urobilinogen, Ketone, Glucose, Protein, Bilirubin, Nitrite, pH and ascorbic acid". Not sure what I am going to do with all this information but at least I will have something to monitor and watch for sudden changes. At the very least the strips will give me a target to aim for in the morning. 🙄
All -
Another question out of curiosity: For those of you out there that have Sleep Apnea and wear a CPAP or BIPAP at night, have you noticed any significant changes in the AHI’s (apnea-hypopnea index) that are recorded? While I have always had some fluctuation in readings from night to night, it seems like since starting Durvalumab, the amount of variation in AHI’s have increased to almost double the range it used to be. None of the AHI readings have reached to any level where I am concerned, just that they are fluctuating over a lot wider range now. Also it may just be my imagination, but after starting Durvalumab I also seem to have much more vivid and intense dreams than I used to. Not necessarily a negative thing, but I am curious if anyone else has had the same experiences? 
Thanks!!!!!!! Hope everyone is doing well this evening.

Happy Friday to All,
February 2020 PetScan/CT completed. NED. Original tumor completely gone. No lymphadenopathy. Oncologist stated 18 months from diagnosis, I am in remission. 🙏🏻😇💕
Questions I had for Oncologist
1) What indicators will tell you that the Durvalumab is/was successful? Why did I respond to treatment so phenomenally well. I have no biomarkers and my PDL-1 was zero.

R-Chemotherapy leaves your body in a couple hours and the effects of radiation can last a year. If you are NED 3 years from diagnosis then we have a pretty good inkling that the immunotherapy retrained your  lymphocytes to destroy your cancer cells. Immunotherapy is still in it's infancy and even though there are some successes, we still don't know and cannot entirely predict who will respond favorably. It takes billions and billions of cancer cells to form a tumor. We have prognosticators that will give us an idea of who might respond favorably to treatment. You had some favorable prognosticators:  Your health was excellent, you maintained your weight during chemo and radiation, you maintained your prior level of activities during treatment, you had very few adverse side effects and your tumor burden decreased. You were astute to your body and symptoms were addressed in a timely manner. If you are NED at the 5 year mark, we can say the odds are in your favor for no recurrence. But there are no guarantees. Current staging is currently used for prognosis but there are too many variables so I like to look at each patient individually and how they are responding to their specific treatments. 
2) What now? 
 
R-I will now see you every three months and we will do scans every three months. We will increase the interval of surveillance scans if you remain stable and NED. Continue to exercise and do maintain your weight. Recent studies suggest that your perception of your “Health Quality of Life" can be a favorable prognosticator for Progression Free Survival. So get out there and live and enjoy your life. Do define and prioritize your values. If you have any symptoms that are bothersome for two weeks, make an appt. to see me. Lung cancer cells can mutate and again fool your immune system to leave it alone. Lung cancer is a difficult cancer but science is moving forward with advances that are prolonging patients lives and controlling the disease long term. 
 
Yesterday was a red letter day. Hubby and I are planning for an extended vacation mid March to California, Oregon and Washington. Wooooo Hooooo, can't wait to be untethered from appointments and treatments for the next three months.
I am going to hold judgement on how I feel NOT being on Durvalumab for a month. Three weeks out of the last month I had the flu and a tooth abscess so I wasn't exactly what you would call a happy symptom free camper. 
Thank you everyone for your support. 
Take care, DFK
 

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

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!!! ☃️

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

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
 

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 - Great news!!!!!!!!!!!!

Good Wednesday Morning to all,
#24 Infusion yesterday.....uneventful. Labs all normal. Usual annoying side effects present, tolerable and managed with my arsenal. My husband calls my arsenal of potions, my Felix the Cat bag.
I had my Neck and Chest Cat Scans two weeks ago. These scan were ordered to rule out any new or existing tumors that may have impinged on my left laryngeal nerve to cause my left vocal cord paralysis. I specifically relayed to my Oncologist and ENT docs that I did NOT want to know the results until my regularly scheduled appt., which was yesterday. I really really wanted to enjoy my Thanksgiving without my "Cancer" taking front and center stage should there be progression. My last chest scan was in May, 7 months ago.
Results:
Chest: Original Tumor no longer seen, Nodular parenchymal disease has resolved. No gross lesions are identified and no lymphadenopathy by size criteria. 
Neck: No masses or lesions. Vocal cord paralysis could be due to radiation therapy within the chest for patients known right lung neoplasm and subcarinal lymphadenopathy.
In Blessed simple terms: NED. 
Relief, joy, ecstatic gratitude does not even begin to describe how I felt sitting there in my doctors examining room, where as five minutes before, I braced myself for the worse news ever. Instead, I got the best news in this stage of the game, at the nearing end of my Durvalumab.
I inquired as to the possibility of deferring my #25 infusion until January, with the rationale of celebrating the remainder of December without any treatments. My oncologist said YES I MAY. Tears of joy streamed down my face as I hugged this very pragmatic man. I got just a wee bit of a smile from him.
Plan is to have my last two infusions in January, followed by a PETSCAN a month after my last infusion. I also dovetailed Cardiologist, Pulmonologist, Radiation Oncologist appts and Echocardiogram of my heart on the day of #26 Infusion. I followup with my ENT in 6 months. 
Oncologist said my port may be scheduled for removal pending the results of the PETSCAN.
And that my dear friends is in a nut shell, my reachable and foreseeable future, the light at the end of the tunnel, a sanguine postscript to the past 16 months.
History: Dx August 2018 NSCLC Stg 3b. Carboplatin/premetrexed x3 concurrent with 60 Gy radiation x30 over 6 weeks. Durvalumab initiated 2 weeks after last chemo.
Thank YOU all for your support.
Take Care, DFK

Hi Ron,
Nice to hear from you! Glad to hear you are still lurking around! I still consider myself a Durvalumab "Newbie"  only had 8 infusion so far. I have to say with the addition of the 5 mg of daily steroids, and my Neurologist adding Gabapentin to my mix of drugs I'm on, my side effects are down to quite a manageable level. My goal is to completely do away with the oxycodone for pain, this Sunday I will cut my 5mg pill in 1/2  and see how that works out.
With all the talk of heart issues, I think I may make an appointment with cardiologist like DFK did to establish a baseline. Both my parents had major cardiac issues and passed away at an early age because of them.
I hope your being on the TKI is doing right by you, I hear so many wonderful things about how people respond favorably to Alcencensa (alectinib) it must be nice to take a pill instead of having to have infusions 😃 I wish you and I and all of us here didn't have to take anything! But we all have this stupid nasty, blasted, disease we didn't ask for, for F**ks sake! But we got, and we are lucky we have the drugs available to us now, that just a few years ago were not. My daughters' father, my ex died from NSCLC in 2000. He probably would have had a better chance at survival, so I'm grateful 🙏
Anyway, enough ramblings, I will pray for a great scan on Monday and keep busy til Wednesday. Please keep us posted on your progress!
Be well and Take care,
Roseann

Tomm, 
Hope you are doing well and the issue with the increased blood pressure becomes a non-issue. When I first learned a little over a year ago now that I would be placed on Durvalumab I also read just about everything I could on the "cardiac toxicity" of the Checkpoint Inhibitors. As I had a heart attack years before and had 5 stents placed, and was on all kinds of heart meds, including several for high blood pressure, I was naturally extremely concerned. On top of it, I was on blood thinners and anti-coagulants as I had went into chronic a-fib, so the first thing I did was consult directly with my cardiologist. He also consulted with his associated electrophysiologist cardiologist and both agreed that there was not enough information available to suggest not taking the Durvalumab. After a few months, I had a EKG and checkup with the cardiologist, who found no new concerns, and I was told just to monitor my heart rate and BP and to come back next year. When I said (somewhat jokingly) that I would if I was still alive, he said that I better be alive or he would kick my *ss. I don't know for sure, but perhaps my heart meds counteracted or minimized any adverse cardiac problems with the Durvalumab. I know my BP never increased, and in fact actually decreased to normal levels. Of course now being on a targeted therapy TKI "Alectivnib" since I was found to be PDL-1 Negative and ALK+, I switched over to having too slow of heart rate with too low BP at times, so my cardiologist cut my Metoprolol dose in half which seems to have helped. 
I have my first CT next Monday, with the results due on Wednesday, of my first scan after starting on the Targeted Therapy a little over 5 weeks ago. Hoping for the best. 
I just wanted to stop in to say hi to the Durva Club members and to say that I am still lurking around.
-Ron

Tomm, 
Hope you are doing well and the issue with the increased blood pressure becomes a non-issue. When I first learned a little over a year ago now that I would be placed on Durvalumab I also read just about everything I could on the "cardiac toxicity" of the Checkpoint Inhibitors. As I had a heart attack years before and had 5 stents placed, and was on all kinds of heart meds, including several for high blood pressure, I was naturally extremely concerned. On top of it, I was on blood thinners and anti-coagulants as I had went into chronic a-fib, so the first thing I did was consult directly with my cardiologist. He also consulted with his associated electrophysiologist cardiologist and both agreed that there was not enough information available to suggest not taking the Durvalumab. After a few months, I had a EKG and checkup with the cardiologist, who found no new concerns, and I was told just to monitor my heart rate and BP and to come back next year. When I said (somewhat jokingly) that I would if I was still alive, he said that I better be alive or he would kick my *ss. I don't know for sure, but perhaps my heart meds counteracted or minimized any adverse cardiac problems with the Durvalumab. I know my BP never increased, and in fact actually decreased to normal levels. Of course now being on a targeted therapy TKI "Alectivnib" since I was found to be PDL-1 Negative and ALK+, I switched over to having too slow of heart rate with too low BP at times, so my cardiologist cut my Metoprolol dose in half which seems to have helped. 
I have my first CT next Monday, with the results due on Wednesday, of my first scan after starting on the Targeted Therapy a little over 5 weeks ago. Hoping for the best. 
I just wanted to stop in to say hi to the Durva Club members and to say that I am still lurking around.
-Ron

Good Saturday morning Ron,
Nice to hear from you and thanks for chiming in on your personal experience with "Cardiac" concerns and follow thru. I truly believe our banter with our experiences are helping others know they are not alone on this journey and provide some guidance for the uninitiated.
There are a few of us here that got CTs recently and are awaiting results. Couldn't of said it better.....hoping for the best.
Take Care, DFK
 

Tomm, 
Hope you are doing well and the issue with the increased blood pressure becomes a non-issue. When I first learned a little over a year ago now that I would be placed on Durvalumab I also read just about everything I could on the "cardiac toxicity" of the Checkpoint Inhibitors. As I had a heart attack years before and had 5 stents placed, and was on all kinds of heart meds, including several for high blood pressure, I was naturally extremely concerned. On top of it, I was on blood thinners and anti-coagulants as I had went into chronic a-fib, so the first thing I did was consult directly with my cardiologist. He also consulted with his associated electrophysiologist cardiologist and both agreed that there was not enough information available to suggest not taking the Durvalumab. After a few months, I had a EKG and checkup with the cardiologist, who found no new concerns, and I was told just to monitor my heart rate and BP and to come back next year. When I said (somewhat jokingly) that I would if I was still alive, he said that I better be alive or he would kick my *ss. I don't know for sure, but perhaps my heart meds counteracted or minimized any adverse cardiac problems with the Durvalumab. I know my BP never increased, and in fact actually decreased to normal levels. Of course now being on a targeted therapy TKI "Alectivnib" since I was found to be PDL-1 Negative and ALK+, I switched over to having too slow of heart rate with too low BP at times, so my cardiologist cut my Metoprolol dose in half which seems to have helped. 
I have my first CT next Monday, with the results due on Wednesday, of my first scan after starting on the Targeted Therapy a little over 5 weeks ago. Hoping for the best. 
I just wanted to stop in to say hi to the Durva Club members and to say that I am still lurking around.
-Ron

Tomm, 
Hope you are doing well and the issue with the increased blood pressure becomes a non-issue. When I first learned a little over a year ago now that I would be placed on Durvalumab I also read just about everything I could on the "cardiac toxicity" of the Checkpoint Inhibitors. As I had a heart attack years before and had 5 stents placed, and was on all kinds of heart meds, including several for high blood pressure, I was naturally extremely concerned. On top of it, I was on blood thinners and anti-coagulants as I had went into chronic a-fib, so the first thing I did was consult directly with my cardiologist. He also consulted with his associated electrophysiologist cardiologist and both agreed that there was not enough information available to suggest not taking the Durvalumab. After a few months, I had a EKG and checkup with the cardiologist, who found no new concerns, and I was told just to monitor my heart rate and BP and to come back next year. When I said (somewhat jokingly) that I would if I was still alive, he said that I better be alive or he would kick my *ss. I don't know for sure, but perhaps my heart meds counteracted or minimized any adverse cardiac problems with the Durvalumab. I know my BP never increased, and in fact actually decreased to normal levels. Of course now being on a targeted therapy TKI "Alectivnib" since I was found to be PDL-1 Negative and ALK+, I switched over to having too slow of heart rate with too low BP at times, so my cardiologist cut my Metoprolol dose in half which seems to have helped. 
I have my first CT next Monday, with the results due on Wednesday, of my first scan after starting on the Targeted Therapy a little over 5 weeks ago. Hoping for the best. 
I just wanted to stop in to say hi to the Durva Club members and to say that I am still lurking around.
-Ron

Tomm, 
Hope you are doing well and the issue with the increased blood pressure becomes a non-issue. When I first learned a little over a year ago now that I would be placed on Durvalumab I also read just about everything I could on the "cardiac toxicity" of the Checkpoint Inhibitors. As I had a heart attack years before and had 5 stents placed, and was on all kinds of heart meds, including several for high blood pressure, I was naturally extremely concerned. On top of it, I was on blood thinners and anti-coagulants as I had went into chronic a-fib, so the first thing I did was consult directly with my cardiologist. He also consulted with his associated electrophysiologist cardiologist and both agreed that there was not enough information available to suggest not taking the Durvalumab. After a few months, I had a EKG and checkup with the cardiologist, who found no new concerns, and I was told just to monitor my heart rate and BP and to come back next year. When I said (somewhat jokingly) that I would if I was still alive, he said that I better be alive or he would kick my *ss. I don't know for sure, but perhaps my heart meds counteracted or minimized any adverse cardiac problems with the Durvalumab. I know my BP never increased, and in fact actually decreased to normal levels. Of course now being on a targeted therapy TKI "Alectivnib" since I was found to be PDL-1 Negative and ALK+, I switched over to having too slow of heart rate with too low BP at times, so my cardiologist cut my Metoprolol dose in half which seems to have helped. 
I have my first CT next Monday, with the results due on Wednesday, of my first scan after starting on the Targeted Therapy a little over 5 weeks ago. Hoping for the best. 
I just wanted to stop in to say hi to the Durva Club members and to say that I am still lurking around.
-Ron

I'm sorry to read about everyone's bad side effects. 
infusion #16 yesterday. Still boring.  All blood work in normal range. No side effects, no weight gain. I take 1/2 gram of CBD oil at night (not from Hemp). I asked my OC if I should expect side effects as I get more infusions and he said they come around infusion 4-6 and then people get treated and their body starts to adjust.  Some people take Diazepam -Valium everyday to help with anxiety. 
enjoy the season

Good Wednesday to all.
I am taking a page from Tomm's playbook, Infusion #23 completed yesterday....Uneventful past two weeks, boring with normal labs and no new challenges. YES!
Great news on Vocal cord front.....after five days of not talking, I broke loose yesterday and I have my normal voice back. No squeaks, no pitchiness, no raspy breathy or Minnie Mouse voice. I can talk. I am a little hoarse (temporarily expected) from talking but it feels great to be able to communicate without miming or needing a writing tablet.
Had CatScans today of chest and neck.....Oncologist said to e-mail him tomorrow for results or I can call him. My next appt is in 2 weeks and I told him I'll wait for the results then. For some odd reason, I just want the next two weeks to be drama free. If results are NED, fantastic, me knowing tomorrow or in two weeks won't change that. If there are concerns on my CatScans, I'd rather enjoy my Thanksgiving and find out later what the concerns may be. 
Happy Gobble Gobble Day to all, 

 
 
 

Good evening all,
Had my appt with my Neurologist yesterday and he is putting me on Gabapentin starting at 300mg to help with my neuropathy, and the nerve pain I have been experiencing. I say yay to that because I have been wanting to stop taking Oxycodone. I don't like the way it makes me feel. However, he did tell me it will make me drowsy at first, but I will adjust, I'm to increase 300mg per week til I'm at 900mg sounds like a lot! But he said I will be able to tell, because my brain is smart LOL!!! I thought that was the funniest thing I heard all day 😃 He's the best. I return in 2 months. Infusion #8 on Monday also see my Oncololgist, I have questions as usual....
DFK.I am thrilled you have your voice back! Good luck on your upcoming scan results 😃
I wish everyone a very HAPPY THANKSGIVING!