I agree with that completely, thank you sharing this info, I have asked to have my treatments every 3 weeks instead of every 2 weeks. So far they are not budging on my request. I have concerns that I may develop RA, my brother at 62 died from the effects of RA, and now my sister has RA, is it genetic, don't know, but I certainly don't want to find out the hard way. Plus the swelling is really a very big problem, now tomorrow I have to go back to my cardiologist, for a heart monitor and sonogram. Ok My life belongs to Doctors and hoping they do the right thing for me.
Barb....I took two...month long breaks because of the pain. Doc is probably afraid of the breaks and the steroids....might get spreading if you stop.
I think you gotta just talk to your doc. Tell him you can't handle the pain this is giving you.
I just googled my immuno stuff....the Tecentriq. Works like Durva. Says it's approved for Lung Cancer plus some others. Wonder why they don't usually give it though!?? Huh. See....THIS is why I'm not allowed to practice medicine.
Barb
This is intresting post today on thread i follow be aware of side effects at any time during treatment.
As I mentioned a while ago, I was taken off the Imfinzi due to nephritis....Creatine soared to 3.1... Kidney seriously inflamed; treated for 6 weeks with mega doses of steroids, starting at 80mg per day, down to 10 over about 6 weeks, and then finally none. I am happy to say that the kidney has recovered from its injury...but still oncologist here (CT - summer location) doesn't want me to have any more immunotherapy. The steroids have created all kinds of horrible side effect....dropped foot and now apparently either an ulcer or gastritis...(I have an endoscopy planned for Tuesday to see what's going on... at one point, the docs suspected I might be diabetic (from the roids), but that turned out not to be the case.... just pre-diabetic.... gotta watch that!
But in all of this.... the good news I am happy to report from the August 8 PET scan is that both lungs are clear. NED. So, the big picture, the big issue has a good story so far..... But none the less.... all my warrior buddies that are on Imfinzi.... keep an eye out for symptoms... my kidney issues had symptoms which I didn't recognize ---- upset stomach and almost complete loss of appetite. Good luck to all still on Imfinizi...I made it to 17 treatments, and clearly that has helped...that's two PET scans (over the past 6 months or so,) that have been NED. God bless you all and keep you safe.
https://www.inspire.com/groups/american-lung-association-lung-cancer-survivors/discussion/duravalumab-imfinzi-patients-support-group/?page=last#replies
Bob
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.
Barb,
be ever vigilant to all inflammation problems at first, coughing and fatigue for me worsens then subsides, worsens then subsides etc. but always seem to be there and get worse for me during stress, and activities especially on bad lung days or days I believe to be my side effect hit days after infusions. Also, if someone is around you who will do it and you can trust, give them instructions on what to do if a side effect hits that completely debilitates you (GOD FORBID!) 911, driving you to the E.R. or assistance with things like dizziness, light headeness and preparing meals with plenty of vegetables and fruits, but very much get well aquainted with all the known side effects, inflammation that debilitates you is not minor, if you are in pain for more than a couple days go get checked out . If you have a computer or phone filing system, start a file and entitle it something like "Durvalumab stuff" then google Durvalumab side effects and download information, pdf's and all the information you may find that is helpful to make you feel better about the knowledge you gain about this drug and yourself. Get to know this drug and it's possible side effects because it will get to know you if it works, And most of all PRAY, then take a deep breath and bask in the well being of knowing and believing that you are doing all you can do to help the drug find it's target and do it's job. This is basically how I do it and it has worked for me, a prepared and well armed soldier wins more battles, Hope I haven't insulted your intelligence or anything but these are the things I wish my Onc. and Primary care provider would have told me after my first infusion. Congrats on #1 and keep your chin up fellow Durvy........Charles
