Durvalumab

[Rower Michelle]

Barb-

Glad to seen the Jersey spirit alive and well. Skip the opiates onward with  roids .  Get some rest- no working through this one... hang tight.  

 

[RonH]

For my fellow Durva Club Members…as promised, my updates:

I received my actual biomarker test report back today. Although I was told last week that I was EML4-ALK+ on the phone, I wanted to read the report for myself.

Yes the written report confirms what I was told over the phone, EML4-ALK Positive. There was also a "NFE2L2 p130F Missense Variant – GOF" listed (Whatever that is I'll have to do some reading on).

There were no EGFR KRAS BRAF ROS1 RET MET or ERBB2 (HER2) variants found.

For those that Inquired: My PD-L1 Expression is Negative.

So the wait is on for my Specialty Drug Insurance Company/Supplier to approve and send me my Alecensa (Alectinib). Wow, a 600mg dose twice a day!  The prescription was sent to them and I am just waiting for approval and receipt. Today I had to meet with the Oncology Nurse Practitioner today for "Targeted Therapy Alectinib Training", but to be honest between here on the forums and elsewhere I didn't learn anything new. But since I had to go in for my blood work (including thyroid panel and TSH) anyway why not listen to the NP for 30 minutes.

Best to all out there. 

[Sillycat1957]

Hi all,

I had my 4th Durvalumab infusion on Monday 10/7. The 5mg steroid seems to have helped with my niggling side effects except for my foot pain. The fatigue is unbelievable, I hope this soon improves, as this, for me anyway, seems to be the top complaint right now. But hey, I'll take it, all my labs are good. I just have to increase my daily walking to at least 30 minutes a day my oncologist said that will help with the fatigue. Well, I can try LOL! I can barely move ova here, but I can do it 💤 

Ron wishing you a long successful run with Alecensa! 

Fighting the fight, One day at a time 😃

Roseann

 

[Barb1260]

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 😶 

[Laurel]

I had muscle pain. Using salon pas lidocaine patches, along with my pain meds really helped.

[Barb1260]

I’m going to try those patches 

[Tom Galli]

Barb,

Patches work like a charm for me. My wife put two on my incision scars last night. I use them about 1/2 hour before bedtime to reduce pain a couple of notches. 

Stay the course. 

Tom

[Kleo]

I had terrible muscle pains with the Durva... first in my back...then went to my arm. Sent me to the ER twice! I remember doing one PET scan where I couldn't lift that arm up...was in tears.

I was put on the steroids for the pain.  Helped a little but not much. I kinda cringe now when I hear y'all are being given steroids. I'm sure it's just me being paranoid. ..and the docs have figured out the right dosage now. I don't want to worry or scare anyone! But steroids and durva were not right... for me.😣

I will say that the muscle pain went away after they took me off the Durva!

[Kleo]

On 10/4/2019 at 12:47 PM, Robert Macaulay said:

Kleo

Could it be one location of the tumor from different angles.?

Wasn't just one tumor...it was one bigger and several smaller ones! Multiple sites.

[Barb1260]

Hey Kleo. Thanks I remember you being in pain. I couldn’t hold my arm up for the CT. It was awful. How are you doing?

[Kleo]

Barb...holding that arm up and still for a scan is like impossible when it hurts so much! I'm on this Tecentriq immuno now...plus Avastin. I asked my doc about the Tecentriq. It's kinda the same as Durva targeting the PDL1 so I was afraid I'd have more problems. But she said they all use different pathways. So far it hasn't caused the horrible muscle pains and spasms for me. (Knock on wood!)

I do remember my onc telling me I might have...I think she said... bursitis?.... in my shoulder.

Nope. That wasn't it. LOL

 

 

 

 

[Sillycat1957]

Kleo,

I read all your posts before starting Durva, I getting #5 on this coming Monday. I am on a low dose 5mg steroid because of the stupid muscle and joint stuff ugh! I have had the middle back pain before Durva, CT scan didn't show anything so that's a mystery pain. I do however, have the shoulder and arm pain not as severe as yours was, but my oncologist seems to think it is from the Durvalumab but because it is intermittent not to worry 😬 another ugh! I really am not comfortable with Durva, but like my onc said there is nothing else out there for stage llla people and this is my best shot at curing my cancer now. I just hope I don't have a case of "bursitis" like you did! 

I hope you have a great run with the Tecentriq/Avastin combo! Take care of yourself

Roseann

[Kleo]

Hi Roseann….

Yeah they've made durva an approved standard now for the lung cancer treatment. There are other immunos out there….the problem is, they aren't all approved for this treatment. I had to get my lung cancer in my brain to be allowed this immuno I'm on now. Who wants to do that!!? blehk. 😣 My onc thinks that my steroid dosage cancelled out the Durva. She still believes the durva worked up until I got the big doses of steroids at the ER. 

Durva ups your immune system, steroids tamp it down. So...in her opinion anyway...it was a wash. Can't remember exactly how many Durva I had...I'd have to go back and look. It wasn't many …. off and on a lot though.  

And...I have NO PDL1 at all. Doc says Durva still works regardless of PDL expression. I say it won't work on me without the PDL1.

But my doc has banned me from practicing medicine now anyway...LOL

[Sillycat1957]

1 hour ago, Kleo said:

Hi Roseann….

Yeah they've made durva an approved standard now for the lung cancer treatment. There are other immunos out there….the problem is, they aren't all approved for this treatment. I had to get my lung cancer in my brain to be allowed this immuno I'm on now. Who wants to do that!!? blehk. 😣 My onc thinks that my steroid dosage cancelled out the Durva. She still believes the durva worked up until I got the big doses of steroids at the ER. 

Durva ups your immune system, steroids tamp it down. So...in her opinion anyway...it was a wash. Can't remember exactly how many Durva I had...I'd have to go back and look. It wasn't many …. off and on a lot though.  

And...I have NO PDL1 at all. Doc says Durva still works regardless of PDL expression. I say it won't work on me without the PDL1.

But my doc has banned me from practicing medicine now anyway...LOL

Your too funny lol! Your posts always bring a smile to my face. I'm sorry you can no longer practice medicine, you were on to something there, didn't your doctor realize that lol! Have a peaceful evening 😃 Roseann

[DFK]

Good Wednesday to all,

Uneventful #20 put behind me yesterday. Lab results remain within normal parameters. 

Persistent side effects: 

Itchies-no better, no worse, just there...alleviated with Rx 2.5% Hydrocortisone cream or OTC Allergy pill. 

Headaches-Comes and goes, usually tension/stress related to my tightened traps/sternal neck muscles. Having the Infusion port placed on my left subclavian really messes with my neck muscles. If my hand held Homedics Massager doesn't relieve my tightened neck muscles then Tylenol or Motrin does the trick.

Generalized Aches and Pains Specific to my thoracic area-I have continued to experience rib area pain as well as back area pain to radiation site. Seems to me, this is one of those "It is what it is" after having our bodies assaulted with chemo and radiation. This pain is annoying but doesn't affect my attending to my daily needs. If persistent, Tylenol or Motrin works.

Fatigue-This one is a doozy. Slays me everyday but I got to admit, keeping a physical exercise regime does seem to keep the fatigue manageable and allows me to attend to my daily responsibilities. Such a conundrum......”I'm exhausted, let me go exercise”. WHAT!?!?! So I continue to bike for an hour everyday to keep me motivated, to keep me physical, to make me feel like I'm really and truly participating in my care.....(gotta do the self talk because most of the time I just ain't feeling the love to get out there in the elements and ride)

Weight Gain- Haven't gained a pound for a month but I did increase my exercise, and I did cut down on my intake. But the fact still remains that I put on 25lbs since January.

Loose Ends-

Ron-Thank you so much for your informative updates. Hip, hip hooray for moving forward with Alectinib.....I wish you nothing but continued programmed cell death.....go get'em tiger👍

Just a little FYI if helpful for the many comments on muscle aches and pains. My husband is your typical athlete gone old but somebody forgot to tell him.....so muscular, joint and nerve pain is a way of life since he insists on being "too" active. For me, these listed remedies have been beneficial to my aches and pains too. Here's a couple that works well for us.

By prescription only VOLTAREN or DICLOFENAC SODIUM. Non steroidal anti inflammatory. A topical gel that may help with your osteoarthritic joint pain, musculoskeletal pain as well as strains and sprains. Does come in transdermal patches too.

CAPSAICIN (Chili Peppers) cream or patches OTC. Blocks pain messages to nerves. Useful for headaches, inflammation and nerve irritation.

LIDOCAINE 4% Patches OTC or Rx for stronger dosing-Numbing agent for joint or muscle pain. 

CANNABIS CBD and THC Balm-We we’re gifted with a jar of the real deal. I tried it on my back muscles where I can feel the tightness and nerve irritation...my back felt better but nothing more significant than any of the aforementioned treatments.

Thank you all, Blessings and Gratitude for our sharing and caring

DFK

 

 

 

[RonH]

Roseann / Kleo,

My Med Onc had said they same thing early in my treatments, that he believed that going on steroids (or at least the higher doses of it) cancelled out the benefits of Durvalumab  as well as several of the other PD1/PDL1 Checkpoint Inhibitors. Don't know if its true or not but it looks like it may well be. He had told me that if my side effects got to the point where the steroids had to be prescribed that he would suspend or likely completely  stop my Durvalumab treatments permanently.

Also having to wait for my Stage 3A NSCLC to progress or MET elsewhere before having the biomarker testing prescribed is questionable in my mind as well. I expect that the insurance companies play no small part in some of all this. All I know was that after almost 1 year on Durvalumab only to find out that I was EML4-ALK+ and PD-L1 Negative and that Durvalumab had already been determined to be questionable for PD-L1 Negative patients and actually ineffective for ALK+ cancers, was a waste of time and money. Now I've had a recurrence and MET to another Lymph Node.  (On the bright side I did get to meet some nice people here in the Durva Club and in the LUNGevity Forums in general). I guess I will be joining a very select ALK+ Club as well now. My ONC said today that after 19 years as an Oncologist, that I am his very first actual ALK+ patient. Although he and his CNP supplied me with a lot of information, thank God that there is a ton of information out there on this and a very informative "private" ALKpositive Facebook group that I've also joined.

I'm starting my Alectinib meds for my EML4 ALK+ Targeted Therapy this evening. Just waiting to see if I grow hair everywhere, develop fangs and claws and then start howling at the moon after taking my first few doses. 😮 Maybe I won't need a Halloween costume for Trick or Treat this year! 😀

Best to all.

-Ron

[Sillycat1957]

Hi RonH,

Your like Kleo, you posts make me smile 🤣 You can be a Werewolf for Halloween haha! My Pulmonologist ordered my Biomarker Test when I had my Lung biopsy done after my PET/CT Before any of my treatment began and before I even seen my current Oncologists. So in a sense he directed my care to the surgeon who then did his thing, explained that if my Lymph node was involved I wouldn't be able to have surgery. Then I went on to the 2 Oncologists. My report says I am KRAS Positive an exclusive membership too! and my PDL1 is 90% High Expression so I really hope that the Durva works, I did ask my dr about me being Kras+ and the Durva working and she tells me not to worry, easy for her to say, she doesn't have a committee in her head that runs amok like I do! She will be doing a PET/CT scan in February. I want a regular scan done sooner but she feels it will only show inflammation, but will do one if I push for one, Bleep me I say! 

I hope your new meds did not turn you into Wolfman Jack! (not sure if you are old enough too know who he is) God Bless and prayers for a good long run on Alectinib

Take care, Roseann

[Barb1260]

Well I am halfway through it. Had #13 today and feeling exhausted. Never sure if it’s the Durva or the Benadryl they shoot me up with beforehand but it seems every one makes me a little more tired. Hey Tomm, where are you?

[RonH]

Roseann - Definitely old enough to remember Wolfman Jack! If I heard a recording of his voice again I'd immediately know exactly who it was. I guess we're showing our ages here. 😉 - Ron

[Tomm]

Hi Barb          I got my TSH back down from 139 to 4.4 and that ended my fatigue. I take 150 units of levothyroxine and  CBD caps at night. I'm busy in my garden 5-6 hrs. a day ..fun time tomorrow when I get a CT. The CBD seems to really help with fatigue..it is legal everywhere.

enjoy the season

[Barb1260]

Glad your TSH is under control. I just switched from CBD caps to oil but I can’t remember to take it. Switching back to the caps. Have a good weekend. Your CT will be fine I’m sure. 

[Kleo]

That Benedryl they give ya is something! One dude in my infusion room passed out & started snoring...very loud! 😴 Kinda amusing.

Me...it gave me restless legs! They lowered the dose. Can't have my legs flyin around the room. 

(She did the MASH.....she did the MONSTER MASH!)🥴

I never got anything else with the Durva though. That was only given for the Taxol.

[Barb1260]

Kleo you are hysterical. I get the Benadryl because I scared them when I had anaphylactic shock from the Taxol and taxotere. Guess they got tired of jabbing me with an epi-pen. 

[RonH]

For all that routinely post or read this forum, while I hope I am not making a mistake posting it here, but a fellow former Durvalumab member isabelle49 who posted in here several times I believe is apparently nearing the end of her fight and chosen to enter home hospice. You may want to read her update posted in "member updates" over the last several days and send her your thoughts and prayers. Forgive me if I shouldn't post this here, but felt that everyone should know.

[Kate7617]

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

Edited October 20, 2019 by Kate7617
left out a word