Kate7617
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Posts posted by Kate7617
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47 minutes ago, DFK said:
Tomm-Excellent on #23. The countdown is on and your finish line is just around the corner. Opal and I have crossed the finish line with NED.....and speaking for myself.....the fatigue is gone and the wonkyness of the Durvalumab coursing thru my veins are gone. My stamina and endurance have improved and I find it mentally and emotionally refreshing to not have to plan another visit for another infusion. In a lot of ways, I feel I have gained back the normality in my life.
Now with the Covid-19 on our heels, another annoyance to contend with but being NED makes it just that, another annoyance like a pesky mosquito. Due diligence will get us thru this "crisis", the same due diligence, intelligence and fortitude that got us thru Durvalumab.
Today I officially cancelled our trip to the Pacific Northwest. We did good as no losses were incurred except for a teeny tiny smidgen of disappointment for our celebratory end of treatment indulgence. No biggie, there will be time later for celebration.
Grahame-You are on your way, though at the beginning of your journey. I hope that those of us who have traveled your road provides you with inspiration to keep putting one foot in front of the other, and to use this forum to support you, educate you and get you to the finish line. With your background, you are fortunate to have a huge knowledge base to address your symptoms. I think Tomm said it best, a lot of the annoyances (side effects) was and is part of the price in (hopefully) extending our overall survival and halting progression. Hope is omnipresent.
Take Care, Blessings, DFK
Did you hear about the man who fell in an upholstery factory? He is said to be fully recovered.
Great news! NED is on our side, keep on keeping on and enjoy your loved ones daily! Kate
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17 hours ago, Grahame Jelley said:
Good to hear Tomm
Interestingbfor me is now after #3 I can report that I immediately on way home feel like my allergic conjunctivitis becomes more noticeable and I get flitting and fleeting areas of itch in differing areas of body. Seems consistent and only for the immediate post infusion couple hours. Fatigue usually most noticeable Wednesday following Friday infusion. Mild dry cough and mild aches in muscle and joints when 1st mobilise in morning. Described to my wife “ like Tin man in Wizard of Aus” but am in NZ
Grahame
Please check your PDL1 and make sure no auto immune disease is in family history, being your own advocate is worth it's weight in gold! Good luck and hoping for a NED for you! Wash hands frequently and don't touch your face is my advise for all of us! Kate
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21 hours ago, DFK said:
Kate,
How wonderful to read of another confirmed NED sans Durvalumab, how totally cool AND awesome is that......We're fortunate to be walking on sunshine. Tomm we need a quip apropro for the wonderful news.
Happy me, DFK
Well I do not know how much the Durva came into play for me, I only had 5 infusions of it, and that sent my health into a downward spiral, but happy day today clear scan and I am on cloud 9! Thank you for all the good vibes and words of encouragement, I am grateful, Kate
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On 3/10/2020 at 7:29 PM, Barb1260 said:
Hey Kate. In my head no uptake is the same as dead. I’m probably wrong but how else would NED show?
No uptake= No cancer, as far as I was told. My PET on Wednesday, great results, clear, so I'm good for another 6 months check with PET. So I am going to live it up! At home, with my compromised lungs until the Corona virus is in the rear view mirror! So now is clear= NED? Thanks Kate
- TJM, Rower Michelle and Tom Galli
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1 hour ago, Barb1260 said:
Not entitled to anything more than a CT every 3 months. They want to pay for both instead of just the PET if they find something.
20 minutes ago, Barb1260 said:Just called to get the criteria. Because I was already diagnosed-gee ya think?-they don’t approve without good reason such as a bad CT or MRI or bone scan. When I said it’s to check if the Imfinzi is working she stated all the doc has to do is have a peer to peer explaining that and it should get approved. So back to my original plan-talk to the doc Thursday and decide if now or after 5 more infusions. Pain in the butt. Going to do my 3 miles to blow off steam. I had to call just to witch at someone there. JG roots ahowing
Hmm, Barb well to see if Durva is actually killing cancer, I honestly believe that a PET wouldn't give that information. What it will show ( as you are aware of) is any uptake. In fact Durva has not gotten that far to tell on a PET. So the CT will show any new tumors ( God forbid) so that is where they leave it, unfortunately. And you are still tolerating the Durva walking 3 miles so I am saying Hip Hip Hooray, and lets start another day!!! The best always, Kate
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6 hours ago, Barb1260 said:
So ticked off right now. Insurance denied PET again. Said unless CT is inconclusive won’t approve a PET. So now it’s another CT to be scheduled. How are you supposed to know if it’s dead or spread somewhere else without a PET?
Fight for your rights! And don't quit, you are entitled to a certain amount of PET scans while battling cancer. FIGHT FIGHT FIGHT!!!!
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On 3/7/2020 at 11:12 AM, PShsy said:
Hi everyone,
Just finished infusion #1 and am a little worried about side effects.
Had scans done and left nodule reduced from 4.2 x 3.2 to 2.4x 2.0. Other nodules reduced is So grateful. But am feeling more out of breath??
Love reading up on everyone.
Polly
Hi Polly, something that I learned along the way, check what your PDL1 is, mine was negative, also make sure that auto immune disease does not run in family history. I had a very bad experience with durva, and right from the start had very very bad side effects, also with breathing. I do pray that the Dr that is treating you is on top and has your complete recovery in mind, unfortunately I didn't have that experience and now suffer from the after effects, I am not trying to scare you, however you need to be your own advocate, I certainly wish you every success and hoping that you are breathing a little better now! You have had success with chemo radiation and that is TERRIFIC! All I know is that Durva is not suited for everyone. Also check to see if you have bio markers. You have to be aware of all that is available to you. Prayers are coming to you now from me! Kate
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Thank you so much to Eagle 13 and to DFK, inspiring and uplifting messages, needless to say! I believe I had a bio marker EFGR and it is no, if there be any others I am all ears! And thank you Eagle 13! Hey its hard enough to be diagnosed with stage 3b lung cancer, then to have Doctors that tell you....We aren't expecting a miracle, and looks like you have one or two years to live was really the worse thing a Dr could possibly say! Well I am a firey red head ( back in day) lol and now I got my Irish up again, and with God willing we will show those former Drs Just what I am made of! I'm not going to worry, worry is useless, and I continue to be grateful for each day! You are all in my prayers and with all the prayers coming around I can't lose! Thank you again, and I will let you all know what happens with PET SCAN when I know! Kate7617
- Rower Michelle and Tom Galli
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Hi everyone! Been a while wanted to let you know Monday I get a PET SCAN and follow up with Onco on March 11th, scary times for me, needless to say. The Durvalumab didn't work for me, as I said I got Hashimoto thyroditidis heart problems, skin basel cell cancer, my spine is degenerated, had pnemonuitis so basically my health is not all that. It truly sucks, because my former Doc wouldn't listen to me when I said what was happening. I wish I had happier news, but I am very happy that some of you guys it is working for! I could certainly use some encouragement now, I did sign up for respiratory therapy, so that is covered by insurance. I am going to wait and see how this test goes on Monday! Keep on keeping on, like I do against the odds, hey all things are possible with God!
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DFK
thank you for your very kind words
no treatment now
I asked for clinical trials, nothing being offered so needless to say I sit on the edge of my seat everyday. Not sure of anything, however Who is? I’m going to talk to new onco this week local papers are showing promising hopes about clinical trials. I don’t understand why nothing but every 3 months have PET SCAN. I don’t know???? Wishing you all the best DFK I’m so happy you made NED! Stay close, we need your optimism! Kate
- DFK and Rower Michelle
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Wow!!! Great news NED is the best news ever! I have changed onco and I am very happy, although I still have a lot of side effects from 5 infusions of Durva, I have Hashimotos thyroidists, and my skin is finally doing so much better! after the 5 infusions all I did was go from one Doc to another first a cardiologist, then thyroid doc, dermatology doc, had basel skin cancer all caused from the Durva, I asked to stop the treatment before I got to 5 but the Dr kept pushing me to continue, it was a terrible experience, and I am still suffering anxiety from it, although I am positive we all have experienced anxiety from the cancer itself. I wish that I was able to tolerate the Durva, with a PDL 1 Neg it seemed fruitless to me. I am so happy that DFK is now NED, that is wonderful news, congratulations! I asked if there be an alternative to Durva, and was told, "not in this setting" needless to say my former onco was not the best at giving bad news. Well onward I go, March 9th I get another PET/scan and follow up with new onco please pray for me, it is very scary not having much support here from home, and I appreciate all the good news everyone has to offer. Kate
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Katum,
Sorry to hear about your Mom's lung cancer. She is a blessed abundantly to have you as her daughter, that is awesome! Everyone has already said the things that needed to be said to help you on this journey. I will repeat that I too am here for you. I pray that your Mom will recover, every day there are new treatments and it could happen to us that we will be cured! Kate
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Thanks to everyone for the input and for all the prayers! Going to a 2nd opinion, and going to ask about biomarkers and such. The Doctors that have been treating me act as if I am from another planet. Never been treated so poorly in my life! and then to put the icing on the cake, my NOW Dr wants to talk with my 2nd opinion Dr, Yikes!!!! and that's after my NOW Dr seems to find the only solution is to watch me carefully on CT scan every 3 months, WHAT?????? Really is that all there is to offer me? I sit here shaking my head, 400,000.000 $$ LATER, guess I can't get Durva so I get the boot. No more money, terrible to think that way, only I have good reason to believe that. God Bless us all and keep fighting for life! Kate7617
- Sillycat1957, Tom Galli and DFK
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On 11/22/2019 at 7:03 PM, Tomm said:
I'm sorry to read about everyone's bad side effects.
infusion #16 yesterday. Still boring. All blood work in normal range. No side effects, no weight gain. I take 1/2 gram of CBD oil at night (not from Hemp). I asked my OC if I should expect side effects as I get more infusions and he said they come around infusion 4-6 and then people get treated and their body starts to adjust. Some people take Diazepam -Valium everyday to help with anxiety.
enjoy the season
So glad that you have positive results with Durvalumab. Wow!!! Keep on keeping on! Kate7617
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On 11/20/2019 at 2:50 PM, DFK said:
Kate7617
I am sorry you have had such a tenuous journey with Durvalumab, and now having to contend with basal cell skin cancer.
I am still learning about options and resources but we have some very smart heavy hitters that may be able to chime in and give you some direction.
Rower Michelle has drilled in me the importance of biomarkers, have you had that done? She also is a proponent for utilizing resources like the Go2 Foundation for assistance when you have questions.
Tom Galli has been around the block and back and is a wealth of information and support.
I can offer you my prayers that you find the support and answers you need.
Take care, DFK
Thank you so much for your concern, when I speak to my Doctor about this, he looks at me as if I am from another planet. Of course anyone would want to know if there is an alternative, why wouldn't I? I have never been treated so poorly in my life, and not to mention MSK has gotten paid more than 400,000.$$$ for my treatment, they tell me go to another facility. I have an appointment on Tues, then get this.... Management in MSK Commack calls and asks if it be alright if my Dr there at MSK speak to my second opinion DR, ( wow! Are these Dr's kidding?) so much stress! Thanks to all of you for the input, I am looking into every option. Kate7617
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On 9/23/2018 at 2:13 PM, Lisa R said:
How is everyone tolerating durvalumab? what are your thoughts about it?
I realize your posting is from 9/23/18 however I was diagnosed 1/29/19 had chemo/radiation/ platinum based, and then the Durvalumab nightmare started. I had 5 treatments and I can not tolerate the side effects and now have basal cell skin cancer on my back, so I asked the Doc if there be an alternative to Durval and was told this is the only option, and we will CT scan every 3 months to see if the cancer has progressed. Wow, this really stinks. If there be an alternative and there is anyone that can attest to it, please inform me. thank you.
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On 10/20/2019 at 6:38 PM, RonH said:
Barb, actually comparing my CT just before I started the Immunotherapy (at the very end of October) and my CT after the Durvalumab break (at the very beginning of January) indicated continued regression of all the tumors. They were still shrinking. Most likely I was still benefiting from the earlier chemo and radiation at that time, and there was no effect, negative or positive, from being off or on Durvalumab. Since I now know that I am PDL-1 Negative and ALK Positive, the Durvalumab had little or no chance of working anyway (or so the studies indicate).Basically at least in my opinion (and you know what they say about opinions) is that the cancer was stopped by the CRT earlier last year and I then had about 12 months before recurrence.
Personally, if I was in a lot of pain, I'd probably demand to take a short break from Durvalumab. Depending on which document you read, the half-life of Durvalumab is ~17 days, so it takes weeks and weeks to actually completely clear your body, but and a big but. this is a decision that only you and your team should be making. Even the documents for Imfinzi gives medical guidance of when to "temporarily suspend" Durvalumab treatments. One concern is that the manufacturers guidance for some side effects if the grade high enough that they recommend to "permanently suspend" treatments. I don't see pain as being on the list, but I have not studied it either. I doubt that there is any actual reliable data of what overall effect it has by taking a 1 or 2 month break in the middle of the treatments. As such, I would think that the MD's would tend to err on the side of caution. Perhaps the Med Onc would agree to a dose reduction for several months to see what happens.??
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.
- MatildaMel and DFK
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On 10/20/2019 at 11:42 AM, Barb1260 said:
Hi Kate. Well after being off the prednisone and muscle relaxers for a couple of days and getting another infusion Thursday the pain is back. Called the doc yesterday. PA on call put me back on muscle relaxers. Not helping much yet but I’ll give it a couple of days. She said doc doesn’t want to put me on steroids at this time. The X-ray And CT 2 weeks ago at the ER showed absolutely nothing, not even anything that “might” be inflammation. So I wait. I did ask what exactly are the muscle relaxers supposed to do, said it will stop the spasms which is what I have had off and on. I hate this
It is a very difficult place to be. And I know it first hand, when I get my CT scan and follow up with the Doc I will know more. Muscle relaxers? We know the side effects of the Durval is a great problem, but should it be enough to abandon the whole idea of immunotherapy? What you need to ask the Doc...… What are your expectations for me moving forward with this treatment? That is my question. I am so sorry that you are having pain, I went to a pulmonary Dr to actually be informed, and it helped. Every day is a gift, let's remember that. I honestly believe that the Doc gives a prescription just to say, hey I did something. I shake my head.
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On 10/12/2019 at 11:26 AM, Barb1260 said:
Not convinced what sent me to the ER last weekend was/is pleuritis. Saw the onc’s PA on Monday, put me on 10mg prednisone for 7 days and a muscle relaxer. Seemed to think the pain is muscle pain. Except for the pain being gone when I inhale and the muscle spasms gone, still hurts when I move upper right shoulder/arm and back. Heat helps temporarily. Anybody have muscle pain issues as a side effect? I almost want to take a vacation from Imfinzi to see if all this goes away. CT and X-ray were all negative at the ER 😶
HI Barb, so the issues you are facing were very similar to what I had. I was given my 2nd round of Durva on Monday, on Tues night when I inhaled my right lung and then around to the front chest was so very painful, went to "triage" they sent me for a CT scan, after being there 3 hours ( sick) the diagnoses was pneumonia, I didn't believe it. I don't believe in coincidence, so I saw a pulmonary Dr that confirmed that is was a result of the CRT and durval, Hmm, could be we all know something about our own bodies? Yes. Well continued 3 more treatments of Durval, I can not handle the side effects, I am blown up like a Thanksgiving Day Float at the parade. On to the cardiologist and it's time for a break! 5 weeks now, I am 85% improved with my health and fatigue and shortness of breath. Yippeee! Is there an answer to this...… not yet. I have a CT scan 10/31 follow up with new Dr 11/4. PDL 1 neg, 12% chance it will work, hmm Dr says, I should go with it, I would like something with better chances, I guess we all do. SO now the ball is in my court, pray for me I make the right decision, and I will pray that you will also get your concerns met with positive answers. Being your own advocate is the place to start, although it is an unpopular place to be in the medical journey, it is what is needed I believe. Best to you! Kate
- DFK and Sillycat1957
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3 hours ago, DFK said:
Rower Michele-Thank you for biomarkers 101 and resource info. Informative, yet you made it very understandable. Somewhere in my arsenal of literature I have the 2019 NCCN (National Comprehensive Cancer Network) Guidelines and treatment algorithms for all biomarkers and for those with no biomarkers. If any one is interested I can find it and post. I refer to the NCCN as my Cancer Center uses their guidelines for care. Website is NNCN.org.
Kate7617-Three to four months post CRT, I developed shortness of breath and lowering pulmonary function scores. Bottom line, diagnosis pneumonitis where my original tumor had been. Oncologist felt cause was radiation, Radiologist felt it was the Durvalumab. I was taken off Durvalumab (doses #8 and #9 held) for a month and placed on high dose Prednisone. My shortness of breath was immediately alleviated with Prednisone and four months after that episode, my pulmonary function tests are nearly pre chemo and radiation normal. Been very fortunate to dodge any other pulmonary problems. I'm coming up on #19 Durvalumab tomorrow and plan remains to receive all 26 doses.
Thank you everyone for informative post
3 hours ago, DFK said:Rower Michele-Thank you for biomarkers 101 and resource info. Informative, yet you made it very understandable. Somewhere in my arsenal of literature I have the 2019 NCCN (National Comprehensive Cancer Network) Guidelines and treatment algorithms for all biomarkers and for those with no biomarkers. If any one is interested I can find it and post. I refer to the NCCN as my Cancer Center uses their guidelines for care. Website is NNCN.org.
Kate7617-Three to four months post CRT, I developed shortness of breath and lowering pulmonary function scores. Bottom line, diagnosis pneumonitis where my original tumor had been. Oncologist felt cause was radiation, Radiologist felt it was the Durvalumab. I was taken off Durvalumab (doses #8 and #9 held) for a month and placed on high dose Prednisone. My shortness of breath was immediately alleviated with Prednisone and four months after that episode, my pulmonary function tests are nearly pre chemo and radiation normal. Been very fortunate to dodge any other pulmonary problems. I'm coming up on #19 Durvalumab tomorrow and plan remains to receive all 26 doses.
Thank you everyone for informative posts and support.
Take Care, DFK
DFK Thank you for letting me know your experience with durvalumab I have had very bad side effects from this durvalumab, I feel that it is causing me more harm than good right now, Too much to go into. I opted out of my treatment today, and asked if there is an alternative to durvalumab, Doc says "not in this setting" so what that means I don't know. I don't know what to do at this point. Any suggestions will be more than welcome, Kate7617
s and support.
3 hours ago, DFK said:Take Care, DFK
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Hello everyone that is getting IV durvalumab, after CRT, is any one coming up with lung inflammation, OGC, that the Dr won't treat? I have had 5 infusions with durvalumab, and I am getting very bad side effects, sharp pain in my right lung in back, radiating around to my front chest. was treated with Leviquin 500 mgs 7 days. My recent CT scan shows that there is still inflammation but Doc says my results are good. Huh, I will never understand conflicting jargon. Oh Well on to the Doc today, and see what happens. PS The CT was on Sept 17th, and as of today I do feel like I am breathing with less difficulty. Thanks to all of you! And you are all in my thoughts and prayers.
- Sillycat1957 and DFK
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- Hi everyone I am a newbie, yet an oldbie, been through CRT and made good progress with those treatments, 30 radiation treatments and 4 Chemo, now I am in IV durvalumab , I had 6 treatments and will get my CT scan with contrast ( allergy) premeds tomorrow, and results next week. Needless to say I have anxiety, and I am hoping that this will allow me some more life here, Having some trouble with nausea and fatigue ( the new normal), Well I could really use some support, so if anyone can give me that today I would more than appreciate it, and will do my best to give it back. Thanks!
- Tom Galli, Sillycat1957 and DFK
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Durvalumab
in IMMUNOTHERAPY
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Thank you very much! No I wasn't able to do 26 treatments of Durva, I did 5, that was all my body was able to tolerate! The great news is NED after one year, only scar tissue there. So 6 months and then another test. meanwhile, at home day 7 Cov 19 has decided to dictate my life, hey I am all for self isolation when needed. I love my house, and can always find ways to keep me satisified. Hey, we pay so much for the roof over our heads, now it's time to enjoy it. Be well, my cancer buddies! Kate