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Robert Macaulay

Durvalumab

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Barb1260-Shocking is putting it nicely....I myself have a few choice adjectives that I use when I need to express my "disappointments". I try to stay positive and in the "light" because the dark places I can go to is nasty and not conducive to where I need to be. My husband is supportive but he, being of the testosterone variety, always try's to find a solution, or a path to work things out. Sometimes there is no path or working out our emotional disappointments, but you and I know, we've ridden this ride before and we're still here, and we can do it again. Get those stretched out big girl panties and put‘em on again.....laugh, cry, and stay in the light of positive healing vibes. You can do this Barb, one minute at a time, one hour at a time, one day at a time. Keep us posted with updates. Sending you ❤️ DFK

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Hang in there Barb I'm rooting for you and all of us while we are on this crazy rollercoaster ride filled with prednisone, levothyroxine, antibiotics, and quite needfully, SEDATIVES . I am not a drinking man or doper but I can almost certainly garonmotee that I am just about ready to have me a few double shotters or a six pack of longnecks (ice cold) to ward off some of this anxiety and paranoid feelings of impending doom I know I subconciencely get from all this. Just went today for number 13 and was not able to receive the infusion because they didn't have any Durva due to some problem with Astra Zeneca so will take #13 next tuesday. That sure is a new one on me though. Praying for us all....

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Thanks Charles. I’m rooting for you too. I sometimes feel like throwing in the towel, cash it all out, stop all the chemicals being put in me and just take to the road until I can go no more. But alas, I come back to reality, put the gloves back on and come out swinging once again.  Somebody needs to do a better inventory of their Durva stock. That seems a little unprofessional. Have a good night!

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Charles, I ALMOST didn't get mine yesterday. Astra Zeneca is changing the way they distribute the drug at least in my area of Canada. Spent two hours on the phone Monday and someone from the pharmacy that is no longer distributing the drug went and got one from their commercial side and took it home with him kept it in his fridge and hand delivered it to the infusion clinic. Unbelievable how helpful some people in the field are!!!!!!!!!!!!!!!!!! I will be writing a letter to his supervisor about it. Infusion #8 yesterday. Side effects are less but the shortness of breath is a concern to onco, she thinks it's from radiation. Will write about my journey when lawyer gives me the go ahead.  Thank you all for posting, it has help a lot. 

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Barb .. sorry to hear your having a bit of the unknown waiting for more tests. I use CBD to help with anxiety and sleep and it helps me.    this is from the NCBI site   https://www.ncbi.nlm.nih.gov/pubmed/30624194

  Cannabidiol (CBD) is one of many cannabinoid compounds found in cannabis. It does not appear to alter consciousness or trigger a "high." A recent surge in scientific publications has found preclinical and clinical evidence documenting value for CBD in some neuropsychiatric disorders, including epilepsy, anxiety, and schizophrenia. Evidence points toward a calming effect for CBD in the central nervous system. 

stay positive 

 

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Hey Tomm. I take CBD in capsules, liquid meds of any kind make me gag. They have helped my joint pain tremendously. Sleep and anxiety, not so much but I’ve always been a terrible sleeper. 

Charles-I would love a long neck or maybe 6 right now. 

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CT report says new 5mm non calcified nodule in upper left lung. Other original tumor in right lung stable and no significant change in size. Does this mean Imfinzi isn’t working?  

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BC JOE

That was just about the last thing I thought I would hear that day "yes we have no bananas (Imfinzi), we have no bananas (Imfinzi) today" reminded me of the gas wars we had here in the 80's. congrats on #8 (Ohhh that number 8)

 

Barb,

here is a link to nodules

https://oregon.providence.org › Files › Nodules Brochure 2014 FINAL

As far as the question "does this mean the imfinzi isn't working" I believe a good answer would be not necessarily. Nodules 5 mm in size are quite common and  95% are non malignant. A stable original tumor doesn't mean the drug isn't working. It is stable and not growing which is really on the positive side so keep your head up but they will need to know the uptake (if any) it could also be inflammation or an infection so hang in there.

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Thanks Charles. It’s scary that it wasn’t there July 2nd and is there now. Guess moving up the CT date because of chest pain was a good thing. 

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Barb,

Ct scans always depress me because other than the beast there are other things I am reminded, that are not going away in my case. and, words and phrases the radiologist uses to describe some things such as "noted changes'  "new" anythings,  "degenerative" this or thats anything 'plueral" "possible ongoing inflammation" Annuerisms and masses,  I kindof know what LLoyd bridges charachter in the old funny movie Airplane meant by ' guess I picked the wrong day to quit sniffing glue", or drinking, or smoking pot and this is quite possibly the way I deal mentally with depressing situations as opposed to taking the ever increasingly popular "easy' way out,  and I am going to be like Forrest Gump on that one and say " that's all I'll say about that"
Trying my best to think about comedic or hilarious thoughts occupies my mind so depression doesn't set in too deeply because I know the beast wants me to be scared, it wants  me to worry so my body will secrete the enzymes and hormones or whatever it is necessary for it to grow and live while using my heart, brain, liver, kidneys, colon or whatever else as footstools while it kicks back and depletes and deceives my bodily resources into believing it is "one of the boys' AND I SAY NO WAY! wITH GOD'S  help we are going to turn the tables on the beast around here and we are going to use all the what-ifs, kitchen sinks, plans b.c. and d or all the way to z to throw at it and using it's own decept against it if at all possible while on this ominous journey .

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Hey Charles. I know it’s easy to fall down that black depression hole.  I tend to dwell on the bad parts of the results and not the good. I should be happy the right side tumor is stable and not one lymph node was mentioned. I also don’t understand why they do CTs then PETS if they find something. Makes more sense to me to get all the information the first time. But I’m not a doc and I’m sure it’s insurance related because I had to fight for the last PET. 

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Barb - The way it was explained to me by my Radiation Onc was that because the PET scan is a significantly higher cost than a CT, the Insurance Companies refuse to pay for it unless a "medical necessity" is proven first, which a CT helps provide. I was once also told that Insurance companies (and Medicare) limit PET scan coverage to 3 per life time, but I am not sure about that as based on what I have  read, it is just based on medical necessity being proven. Perhaps the level of proof increases after the third, IDK.

All the best! -Ron

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Hello all,

I finally found this Forum, I too am a Durvalumab baby! I had my 1st infusion on 8/12/19, no problems other than a lot of fatigue, 2nd infusion 2 weeks later (on Mondays) by that Wednesday it seemed by body said no, nope, it started a whole slew of things nothing drastic but enough to halt my 3rd treatment by my oncologist here's a list of what my side effects were:

Started out as pain in my left foot and right knee, slight cough with some blood in my phlegm, slight shortness of breath, muscle pain and pain in all my joints. Also chest pain at times a stabbing pain like someone was stabbing me with a knife! Well WTF! I never experienced any coughing with blood, or shortness breath no chest pain either, before my diagnosis. I have a history of arthritis, Epilepsy, migraines, and I have seen a chiropractor for the last 20 years monthly for my back issues and arthritis, because I didn't want to have surgery or take pain meds/drugs and it's always helped. So these new things are def. related to the durvalumab, most have subsided, my blood work is not bad, my oncologist says she will include a 5mg steroid with my infusion if I am cleared for treatment next week 9/28/19. Until then I will try my best to stay in the light and keep up the fight!

Take care everyone! Roseann

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Hi Roseann. Welcome. Sorry to hear about all your side effects so soon after you started. Keep us posted. I get weird little aches and pains but nobody can say for sure if related. We are all trail blazers on this stuff. 

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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!

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Just a quick update. Had my most recent lung needle biopsy today, this time they went in through my back and into my right upper lobe, just to the left of my right shoulder blade. No real pain during or after except I did have a partial lung collapse. It however re-inflated by itself before the first x-ray an hour later, and then the second x-ray two hours after the first one confirmed and I was released. A long day, 7am check-in & 4:45pm check-out and I am beat. Results are due Wednesday afternoon. (They didn't bother to tell me not to drink liquids before the procedure so I had to wait for 4 hours in the morning)!

 

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29 minutes ago, Kate7617 said:
  • 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!

Welcome to the Durvalumab forum Kate. Along with a lot of information you'll find a lot of support here. From my readings you'll find people on here that are just beginning the Durvalumab treatments all the way up to those that have completed it. A lot of experience to be freely shared. Although there are many different experiences with the numerous possible side effects of the treatments, virtually everyone experiences the anxiety of waiting. I myself just last month completed the 18th Durvalumab Infusion and am now waiting for a biopsy report since my last CT and PET Scan indicated "possible" progression in one spot. However the good news was that all the other nodules and lymph nodes show no activity what-so-ever!. I truly believe that the Durvalumab help slow any progression and possibly prevented any new ones. Time will tell.

One again, welcome here!

-Ron

 

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Welcome Kate.

Reading though this string will give you lots of insight into Durvalumab treatment, side effects and remedies for side effects.  This is likely the most comprehensive source of patient provided information on this drug available and we thank Robert for starting it.

Here is something that new folks have found useful for surviving lung cancer treatment.

Stay the course.

Tom

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Hi Kate and welcome. I’m on the same treatment track as you it seems and will get # 11 on Thursday. The fatigue drives me nuts as it comes on suddenly and usually when I’m in the middle of doing something. Every one here is supportive. Heck, I could be a real whiner sometimes and someone will always respond with a positive thought. Give a shout whenever needed.  We are all here for each other  

 

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Hi Roseann,

Welcome to a place to get information and to share your info. to help others. Good to hear that most of your side effects are going away, you sure did have a WTF bunch of things at once. Getting treatment means you believe in your future, keep blazing the trail with us.

Hi Kate,

Welcome .. two new folks in one day helps all of us.. thanks for joining  and sharing. Fatigue seems to be the most common side effect. It appears that the thyroid gets affected by this drug and most are not tested until the fatigue really sets in. My TSH was 139 when they finally checked me and gave me some meds to correct it (now 63)  and many others are or were 45+ TSH. This may be the cause of your fatigue. Believe in the future and be here now and enjoy the season.

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Roseann and Kate.. 

I forgot to ask. If you don't mind what  is your PDL-1 expression?

thanks

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Roseann, Welcome again, you found the Durvalumab Forum.....great.

Keep us updated on what your oncologist decides with reinitiating Durvalumab. I'm never quite sure what to make of all the annoying adverse events that we experience . Just to be on the safe side, I report everything and let my oncologist decide on further follow thru. I did have two doses of Durvalumab held for pneumonitis 3 months into treatment. I actually argued with my doctor and said my cancer should have priority and I do not want to have my Durvalumab held, let’s ride this one out since I'm only a little short of breath and just a little compromised. Well, he looked at me and said, "Nope, your lungs take priority today".....I actually enjoyed the month off. Symptoms abated and I actually felt kinda human for a few weeks!

Let your body heal and yes, stay in the light. And as Tomm put it so eloquently, believe in your future.

Kate, welcome. Tom Galli provided some really good pointers to get you thru this waiting period...lot of food for thought. No easy answers for sure for how do you manage chaos and uncertainty without going off the rails? Nausea sucks, fatigue, I think we're all experts at pacing ourselves. Who thought doing a simple load of laundry would require three pit stops before hitting the washing machine but life goes on, and that's the beauty Kate, life is going on for all of us. We are adapting and you will get thru this next week as you ponder the results. Stay in the light, have faith in hope. And I again quote Tomm, believe in your future. 

RonH-Damn, that was a long and rough day but glad you're one step closer to results. I haven't had a needle biopsy and thru your description, despite not feeling any pain, it sounds pretty darn horrific. Rest well. We're all pulling for you. You're in my prayers and are remembered as I say goodnight in my healing corner. 

Barb-#11 on Thursday......moving forward...WoooooHooooo. Gloves back on. Did I miss reading what plans are in store for your mystery 5mm nodule? 

Take care everyone, Prayers to all, thank you Tomm, we are firm believers in our future.

With Blessings and Gratitude,

DFK

 

 

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Hi Tomm,

Thanks for the welcome! I think I'm going to like it here 🥰 I have had no bio marker testing done at all, I don't think Medicare covers that? My Oncologist said that Durvalumab works no matter what type of mutations we have, and that the PDL-1 expression does not matter either. 

Take care, Roseann

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