Durvalumab

[PMD]

Thank you everyone for your very helpful responses. 

I've not had a biomarker. The bronchoscopy was unable to take sufficient sample, I only have one lung, and a needle biopsy was regarded as too risky. 

My oncologist isn't very receptive to complimentary treatments. So I don't feel able to discuss with her. In any event, I have decided to hold fire on THC for the time being.

Kind regards

Mike

[Eagle13]

4 hours ago, PMD said:

Thank you everyone for your very helpful responses. 

I've not had a biomarker. The bronchoscopy was unable to take sufficient sample, I only have one lung, and a needle biopsy was regarded as too risky. 

My oncologist isn't very receptive to complimentary treatments. So I don't feel able to discuss with her. In any event, I have decided to hold fire on THC for the time being.

Kind regards

Mike

Hi Mike,

Biomarker test can be done from a blood draw.  Durvalumab did not work for me.  I was not tested for PDL1 prior to the infusions.  I had 8 infusions and ended up with a Pleural Effusion.

I recommend finding an NSCLC specialist to get a second opinion and request the liquid biomarker test. 
 

🦅

 

 

[Barb1260]

Exactly one year ago I had my 26th and last Imfinzi infusion. So far so good!!  

[Rower Michelle]

Hey Barb!

It’s a weird anniversary someone outside our circle of friends here would understand so a big hug of congratulations to ya!!! That’s great!  

[Opal]

Yeah Barb!! It's hard to believe isn't it!? You go girl!!!

Let all of us in the Durva Club celebrate many more anniversaries with you!

Opal

[BridgetO]

Happy Durvaversary! I wish you many more.

[VickiP]

I am new to this smart and welcoming group of travelers in the lung cancer world.   I have been in the world for two years but haven't gone far in talking to other patients.  I am not an outgoing person but now I know It feels right to talk.

I had had a biomarker test during the biopsy of my tumor and (while I was in the hospital with pneumonia) my doctor started chemo and keytruda.   (They kindly waited until after midnight to start the infusion so that my hastily acquired Medicare supplement was in effect!).  Now I get an infusion every three weeks.

Yesterday I got on this immunotherapy forum and read through.  Now I have a basic question:   I saw a lot of comments about the "Durva Club"  and durvalamab,   I have never heard that word or known anything about that immunotherapy treatment.  Keytruda is all I know.   Are the different immunotherapies used for different tumor compositions?

[LexieCat]

I'm not on Durva, but according to the website, it's for unresectable Stage III NSCLC after chemoradiation. So you wouldn't be a candidate (at least according to that) because of your stage and treatment.

[Tom Galli]

Vicki,

Are different immunotherapies used for different tumor compositions? In a word, yes. There is a concise but complete discussion of immunotherapy treatments and lung cancer here.

Stay the course.

Tom

[VickiP]

Thanks.   I don't know how long I will stay on Keytruda.   At one point it was going to be two years.   I did have an opaque glass (?) nodule that showed on my last two scans.   Since it hadn't changed, the decision had been to just keep monitoring.  I see my oncologist next week so I will ask him again about that.    I read a post about hip pain and other pains and have noticed some in my hip sometimes also.   But I'm aging.  Another thing is a side crampy like pain.   (I used to have that awhile ago and it turned out that I had broken a rib from coughing.).  Anyway, all questions to bring up.   Since I see him alternative times I usually have some.   (I know you are all familiar with the questions drill but I can always use some prompting too.   Sometimes I find myself just  saying "I'm fine." )

[Tom Galli]

Vicki,

I know of many who are treated with Keytruda and who stay on the medication for about 2 years, then treatment stops. This seems to be an emerging pattern for Keytruda. It seems in these folks, their immune system is trained to recognize and eliminate metastasis. For muscle cramps, there is a little reported chemo side effect of magnesium deficiencies reported by blood tests. I have this problem as a permanent side effect and ward off muscle cramps by taking 1000mg of magnesium per day. Ask your doc about your magnesium blood levels.

Stay the course.

Tom

[VickiP]

Thanks for the responses.   Different immuno therapies for different situations.   I will ask about magnesium.  

[Tomm]

Hello All...

I thought I'd visit this really quiet support forum. I don't see questions coming from new Durva people or anyone telling us how their infusions are going and if they are having any side effects or questions.  How is your blood work, fatigue? Are you having your TSH checked? Mine went up to 139 with no one testing, normal is .3 to 5 mU/L.  Get your Pd-L1 checked too.

I want to share my good news with my fellow travelers. Today is my 5 year canceranniversary. After all the tests I was diagnosed with Stage 3a lung cancer. The oncologist's prognosis was 6-18 months. I didn't know if I could go into remission and  added a Naturopath oncologist to my team. She helped me to use the correct supplements with chemo. I got the standard taxol-carboplatin and 30 days of radiation to 4 targets at the same time. I also used a lot of pure oil, 1 gram of CBD in the morning, 1 gram half THC and half CBD at dinner and a gram of THC at bedtime. I went into total remission for two years and then had a recurrence putting me at Stage 3c. I did a repeat, same chemo-radiation and oil. I went into remission again and  lucky me after that I got to take Durva. I have been in remission for 3 years now.

I want people to know there is hope and Durva does work for many. 

Stay safe.

old joke   ....My aunt’s star sign was cancer, pretty ironic how she died. – She was eaten by a giant crab

[LexieCat]

Great to hear, Tomm! Keep it goin'!

[Rower Michelle]

Hey there!  I miss your jokes!  So glad to hear that you’re doing well!   I can’t believe how many years it’s been.  That’s great news!  I hope you had a fabulous summer at the farmer’s market!!!  Carry on…

Michelle

[Sillycat1957]

Congratulations Tomm! I'm still here and kicking life around! One year after Durva. Last scan was in May, tumor still at 8mm so, yay! I come on here once in awhile to see what's happening, usually not much. Fall is just around the corner. It's great to be alive!

Namaste 🙏

Roseann

[Rower Michelle]

Hey Roseann- was thinking about you when the Lands End Fall catalog arrived the other day.  40% off, time to start shopping! 

[Barb1260]

Just wanted to say hi to all. Michelle I hope your family got through the storms ok. I’m just living life. Hope everyone is doing well. 

[Rower Michelle]

Hey Barb- great to hear from you!  Dad said they are all okay In Bloomfield.  They got a little bit of water in the basement which wiped out the pilot light on the water heater.  This was the first house repair issue since Mom died.  He managed it well enough.   Glad to hear you are doing well! 

[Sillycat1957]

Hey Michelle, getting to be that time of year again 🍂 nice to be in your thoughts, I just got some emails from Land's End with the new Fall promos 😉

Hey Barb, hope all's well with you too 😁

Life goes on, for that I'm grateful 💜

[RonH]

Just checking in on my friends in the "Durva Club". I hope everyone is doing well and having a nice holiday season. Wishing everyone a healthy and prosperous year to come. The Durva Club sure is quiet these days.....I am hoping that is primarily due to the Durvalumab having helped everyone. I am still during well over in the "ALK+ Targeted Therapy" area. - Ron

 

[Tomm]

Hi Ron...

good to hear your doing well with ALK+, I'm doing well too and hope the rest of the club is staying safe

I'm so excited—it's time to take out the garbage. What should I wear?

So many coronavirus jokes out there, it's a pundemic.

The only jokes allowed during the coronavirus are inside jokes.

 

[Opal]

Hi All, and happy new year. It's a great feeling welcoming another year. And hard to believe the time that passed since Durva forum started. 

I was so truly happy to see posts and especially the 5 year cancerversary, Tomm. Way to go! TX for sharing. It is great encouragement, at least for me. November was 3 years I finished my Durva. March are scans and if all is well, I should be able to do scans annually. Makes me a bit nervous but I will think positive.

M Rower, sorry to learn you lost your Mom. I help out to care for mine, she turns 91 end of this week. 

Lexiecat you're in my prayers.

Barb, Ron, Sillycat, Eagle 13, Tom G and anyone I may have left off here it's great to see your posts.

God Bless, stay safe and healthy. Hugs to all.

Opal

 

[Barb1260]

Happy New Year to all as well. I’ve just been living and working and was football Grammy for a while there, not the pros my grandson. Getting ready to start spring practice, which starts February here in the south. No news good or bad health wise. 3 years since diagnosis, almost 2 years finished with treatment. Now on the 6 month schedule for scans, finally. Still have my port, scared to tempt fate by taking it out. I don’t know how I’ll get over that fear. And I get to see all the great ladies at the doc’s office every 2 months for flushes.  Michelle sorry about your mom. 
Hugs and kisses to all!!

 

[Sillycat1957]

Happy New Year to all! Still kicking the rocks around, gratefully. Everything is stable, since last scan I had in December, except a small 7mm tumor (probably a cyst) the radiologist quoted, my oncologist said no worries, all's good 👍 hmmm. Sometimes I wonder. But hey, been ok so far. So I'll take it. Glad to see everyone is doing pretty ok too. We seem to all be staying ahead of the curves for now.

God Bless, stay safe,

Namaste 🙏 Roseann