Dear Dr. West:
I have been reading and listening to everything you have to say about the efficacy of all the new immunotherapy drugs that are coming on the market. Your podcasts are so encouraging for those of us who are now diagnosed as advanced stage lung cancer. My lung cancer has metastasized to the bones in particular my right hip, SI joint, and areas of the spine. I am now enrolled in an Astra Zeneca Clinical Trial titled Mystic.
I know the reason for the trial is to asses the efficacy of these two drugs, of course. I have a few questions, I hope you can answer from what you MAY now know about these two drugs given singly or together.
1. Can you tell me anything about each of these drugs?
2. What is your opinion about these drugs being given together?
3. How does the PDL-1 mutation play into a factor with each? And is there a range of expression for the PDL-1 mutation.
4. I am also on a monthly injection of XGEVA. Your thoughts?
Thank you,
Louise
Reply # - June 24, 2016, 08:27 PM
Hi Louise,
Hi Louise,
It's still early to tell for certain (trials take much longer to produce results than we would like), but Dr. Creelan did make these comments on the early experience with this combination:
"We do have several of these Phase I trials for lung cancer open at our center for past year or so (eg nivo/ipi and also tremi/medi).
I believe most would agree that this combination concept is more potent. My understanding is that there are several advantages to the combination: for example, based on scant information so far, the responses seem to be independent of PD-L1 status. There also seems to be a higher proportion of responders as well, although still not as high as we want, which is 100%. At the same time, the combinations do seem to have more autoimmune side-effects as well: GI, skin, endocrine, for example. These are usually quite manageable with courses of steroids or hormone supplementation. Nonetheless, in contrast to chemo where almost everyone has some cumulative toxicity, most patients cruise along with few problems. At the end of the day, most patients are wiling to accept a higher risk of these auto-immune side effects, if it means NOT talking about recurrent lung cancer." - http://cancergrace.org/topic/medi4736/page/3/#post-1265367
PD-L1 isn't a mutation, but rather a protein that is expressed by tumor cells, at varying levels. PD-L1 testing seeks to determine the level of that expression, but the cutoff between high and low expression is somewhat arbitrarily chosen, and may vary depending on who is testing.
XGEVA is pretty commonly administered to patients with bone metastases, and you can learn about it in this podcast.
Hoping you have results on this trial.
JimC
Forum moderator
Reply # - July 30, 2016, 10:20 PM
I just received my third
I just received my third infusion of both Medi4736 and Tremi. The first follow up scan was done but too early to show anything conclusive. Have been tolerating the combination very well and will have the 4th and last infusion of both drugs in August. Another scan will be done and hopefully will show that the combination is showing no progression. After that I will be on one immunotherapy drug, Medi4736. So far so good and am hoping for that miracle. Will update after my next scan later in August.
Thank you so much for this website and for always being there for us.
Louise.
Reply # - July 31, 2016, 08:32 AM
Hi Louise,
Hi Louise,
Thanks for the update. It's great that you're tolerating treatment well, and we will be sending positive thoughts for great scan results next month.
Glad that we have been helpful.
JimC
Forum moderator
Reply # - August 23, 2016, 08:09 AM
hello louise,
hello louise,
i am from germany and also in the mystic trial since december 2015. i am getting this as a first-line-medication. actually it works and i am in "stable disease". i am feeling very well. almost no sideeffect but little dry mouth and sometimes diarroe. the diarroe was getting less since i only get medi4736.
how are you actually?
kind regards
TheGotchi
Reply # - August 23, 2016, 08:53 AM
Hello from Phoexix AZ,
Hello from Phoexix AZ,
Dear theGotchi
It was so good to hear from you and your wonderful results. When I posted my information, I had hoped that more people in the clinical study, and especially those that were randomized into arm 2 like yourself would respond.
You are six months ahead of me in this study and I hope you will continue to post your progress in this study. I have the same side effects and will get my last infusion of both drugs on Wednesday. I had my CT yesterday and will get the results tomorrow.
Again, I am so excited to hear from you. Maybe if you don't mind, you could elaborate on your particular situation. If you like I can give you my personal email, but the beauty of this website is that others will benefit from our discussion.
Best regards,
Louise
Reply # - August 23, 2016, 11:35 AM
hello again from stuttgart,
hello again from stuttgart, germany,
that means: "sorry for my english". it's good to be not so lonley in this trial. thank you so much.
i was told that there is or maybe was one more patient in my clinic was in this trial. she had quite heavy side effects (heavy itching the hole boddy). i had just little of this from about week 8 to week 12.
i started in december, than missed the third cycle cause of diarrhoe. in my opinion it was not that much, but they said, it would be too dangerous.
it was not allowed to get this cycle later.
now i got number 10 last week on tuesday.
last CT was on monday last week.
i hope that this stable disease lasts very long. some patients of my doctor are in a stable disease since about 30 months :-) ... but some are not :-(.
last tuesday i had to sign a new information about the mystic trial. there are some, in my opinion, pretty good modifications:
- from now on you can get this midication as long as you have a benefit from this and not only 12 months.
- they are telling that about 1100 patients could participate on this trial.
best regards
TheGotchi
Reply # - August 25, 2016, 10:05 AM
Grace moderators and Gotchi:
Grace moderators and Gotchi:
I want to report my oncology visit yesterday was a VERY POSITIVE one. Positive in a sense that no new tumors were found and there has been no progression of the existing ones.
I have learned that STABLE is a very good positive result. My doctor at the Mayo Clinic here in Scottsdale, AZ is very pleased and if she is pleased so am I.
I continue to feel fantastic and I do have to say that even my pain has been mitigated and my walk is much better. The bone mets that settled in my right hip were causing me a great deal of pain, and as of this week are about a 2 or 3 on a scale of 10!!
Gotchi, I hope we will continue to keep in touch as I wish you well in your treatment in the Mystic Arm 2 of this Clinical trial. Also, if you could fill in your bio information, it would be helpful to know more about who you are and how you got to this point. Maybe some more of us around the globe will join our Mystic Club. :)
Louise
Reply # - August 25, 2016, 07:01 PM
Yahoo Louise!
Yahoo Louise!
So great to get this news. How wonderful you are feeling great and pain low on the scale. STABLE is the new brilliant
Reply # - August 25, 2016, 07:07 PM
Gotchi,
Gotchi,
Hi. I'm so glad you posted. Like Louise I hope you continue to share your journey with us. I know it's hugely helpful for the two of you but to those who haven't (yet) posted who are in the same boat.
Cheers to you and Louise!
Reply # - August 27, 2016, 04:35 AM
hello Louise, hello catdander
hello Louise, hello catdander,
thanks for having me here.
I tried to write down my experience of my journey so far. please feel free to contact me if you have any questions. I will try to answer with my limitied english and my good friend, the Google-translator ;-).
I am a 1970 born male and a never smoker from germany, so please be lenient toward me with my bad english. I was allways an active one on the sunny side of life doing ironman-triathlon, combat sports (black belt in tae-kwon-do), hill-climbing in Nepal a.s.o.
in may 2014 I married my wife. in the beginning of october 2015 my wife and me were so lucky cause she was pregnant with our first baby. the perfect family.
in the end of oktober 2015 I was treated for pneumonia with an antibiotic. after this was not working my doctor sent me to a specialist lung clinic.
there they made a pleurodese and found out that I had about 3 litres of "water" in my left lung. in this "water" they found cancer-cells. after making a CT-scan and a biopsy of the pleura they told me for sure that I have an adeno carcinoma with mets in the pleura and the spine so it is stadium 4 with no possible surgery.
caused by my good health (but the cancer) the asked me if I would take part of the 3-armed (standard chemo, durvalumab (medi4736) or durvalumab + tremelimumab) mystic trial. No question that I was so lucky to be asked this. I was drawn by lot in the durvalumab + tremelimumab-arm getting the dose every 4 weeks.
I was checked for mutations like KRAS, EGFR and so on but don't have any of this. so I started the trial in december 2015. in the first about 8 to 12 weeks I had little diarrhoe but too much for my doctor, so he decidesd that I had to miss the third dose of tremi und medi. i was so sad, cause I was feeling pretty good..
End of part 1.
Reply # - August 27, 2016, 04:39 AM
Part 2:
Part 2:
the first scan in february showed small swallow up, after that stable disease and and then a reduction for about 3 months. now I am in "stable disease" with ... what they think ... recalcification of the spine-mets.
I have very little side-efects:
- sometimes little diarrhoe
- dry mouth
- different sorts of pain anywhere in my body but no need for medication so far.
- chest tightness
- heavy heart beat
- but everything is easy to handle cause that don't last too long.
So I would love to hear from the journey of others especially in the mystic trail or other immuntherapy-trails.
I also would love to have information of what could came for me when the immun-therapy would not work anymore. My doctor told me that he knows some patients in stable disease since more than 30 monthsand it is ongoing.
kind gegards TheGotchi
Reply # - August 27, 2016, 06:52 AM
Dear Gotchi,
Dear Gotchi,
Our journeys are so different, despite the fact that we ended in a similar destination. One thing I can say is that we are so lucky to be living in an age when such treatments such as Mystic are available to us. So much has advanced in just the last five years. Your progress is so encouraging to me. I am not sure whether you discovered that if you click on my moniker under my name you will be able to read my history with this disease.
I do believe that we both were lucky to be randomized into arm 2. Our stars are lining up to give us both a bright future and many more years to enjoy our families. Good luck to you and your young family.
Again, I thank Dr West and all those from cancer grace for their hard work answering questions and keeping us all connected.
Louise
Reply # - September 15, 2016, 04:30 AM
Dear Louise,
Dear Louise,
thanks a lot for your reply. I love to hear from you and your journey. Your are right that we started at so different points and now doing the same steps. I read your history so far and was wondering how you got in this trial. In my opinion the mystic is just for first-line-therapie but maybe I misunderstood something. Anyway as you already wrote we are so lucky to participate from this trial.
yesterday I got dose no 10 of durvalumab (medi4736). they are always doing the same tests like EKG, lung-functionality and X-ray drawing on this day. this shows actually no progression. hopefully the ct-scan on september, 26. will show the same.
also from me. thanks a lot to all of cancer grace for there hard work.
kind regards
TheGotchi
Reply # - September 15, 2016, 06:06 AM
Dear Gotchi,
Dear Gotchi,
I, too, love hearing from you. It is my barometer (hopefully) for my months ahead. Next week will be a big week for both of us. On Monday, September 20th, I will have my fifth infusion which will be the first time for my singular drug of durvalumb Medi4736. You will have to let me know how your 9-26 CT scan went.
First, let me answer your question about first line therapy. This trial (Mystic) is the FIRST time I have been given any drugs for my lung cancer. Since 2011 I was on a "wait and watch" until 2014 when they did a lung resection surgery, but have never received any chemo or other drugs. This made me eligible.
My biggest side effect is the very very dry mouth that now has caused a dry cough that is very irritating. My question to you, did you have this side effect and if so, did it go away once the Tremi was discontinued? Since we are to help each other, I will say that have found some oral tablets that create the saliva and therefore give me temporary coughing relief. Xylimelts that I order from Amazon have helped. Some drugstores also carry them.
Let's continue to keep in touch. It is my hope that others in this trial around the globe find cancer grace.org and join our conversation. I am not sure how you found it, but I found it by just doing research. It would be wonderful if all oncologists told their patients about it. But I feel that may have their egos challenged by all the questions it evokes. Fortunately, I have GREAT doctors whose egos are not bigger than their practices. I actually went to Seattle to visit with Dr West.
Your partner in Mystic
Louise
Reply # - September 15, 2016, 06:30 AM
Hi Louise and Gotchi,
Hi Louise and Gotchi,
I'm heartened to hear that you're both doing well on treatment. I just wanted to add that if you develop a persistent cough, it should be reported to your oncologist, as pneumonitis is a possible, though not highly common, side effect which would need to be evaluated and addressed.
JimC
Forum moderator
Reply # - September 15, 2016, 06:56 AM
Dear JimC,
Dear JimC,
I agree to checking on the cough, and several tests were done including a larnoscopy(hope this is spelled correctly). It is definitely a dry cough caused by the lack of saliva.
Louise
Reply # - September 15, 2016, 11:42 AM
In hopes of attracting others
In hopes of attracting others I changed the name of the thread to add "Mystic Trial Thread". I hope that's alright but mostly I hope it works.
Louise and TheGotchi, So good to hear all is reasonably well :)
Reply # - September 15, 2016, 11:59 AM
Thanks. That is a great idea.
Thanks. That is a great idea.
Reply # - September 28, 2016, 10:24 AM
hello louise, catander, jimC,
hello louise, catander, jimC,
sorry for my late reply. I hope you are doing well with your cough. I never had such a one like you described.
as you described i also had/still have a verry dry mouth. I cannot exactly tell you when this sideeffect started. I still have a dry mouth, but not that much as in the beginning in about february or march. my oncologist told me that there is some medicine for this but it would taste horrible and not helping that much. so the only thing i am doing ist drinking ... drinking ... drinking. so there is hope for you that it could get better for you. actually i am drinking about 2 litres of water a day. when doing sports it is much more.
how was your last infusion?
last monday I had my last CT-Scan. It was not the best result, but there is hope. I just asked by telephone for the results. They were telling me that there is the possibility of a growth of max 10% in some parts of the bone mets. they are actually not sure. It could be just a swallowing up.
what we are doing now is to go on with mystic infusion no 11 on october, 12th. the next ct-scan in about 6 weeks will decide if we are going on with mystic.
kind regards
torsten
Reply # - September 28, 2016, 11:30 AM
Dear Gotchi,
Dear Gotchi,
Thank you for keeping in touch. Let me first say, don't get discouraged by your last CT scan. I have read there are times when it may look like growth in the cancer, but it is pseudo progression. It is the flare up of the immune system fighting the cancer. I will hope and pray that is the case in your situation. My question to you is how are you feeling? What is your quality of life? Again, if you are still having dry mouth I highly recommend an over the counter oral mint called Xylimelts. They are fantastic for creating saliva in your mouth.
Now to me. I had my first single immune drug therapy last week. I am now down to Medi4736 without the Tremi. The biggest thing I have noticed is that my dry mouth has gotten much better even when I am not using the Xylimelts. I will have my CT scan this coming Monday Oct 4. I am hoping for a stable or better result. Will let you know how this goes.
Again, you and I are on this same journey and I wish and pray that this is the answer for both of us and all others who are enrolled in Mystic.
Praying for all of us,
Louise
Reply # - September 28, 2016, 12:34 PM
Dear Louise,
Dear Louise,
thanks also for answering that quick. It feels so good not to be alone in this mystic journey. thanks again.
what i had forgotten to answer is the way i found cancergrace. i was researching the web for all combinations of nsclc, medi4736, tremelimumab, durvalumab aso. then i found the thread of mrkenney. i found out, that he has his own webpage (http://mrkenney.com/pardon-my-tardiness/) and this gave me hope. okay, he didn't go the same way, cause he has a different kind of cancer, but i love his journey.
to me: i am hoping that it would be just some kind of pseudo progression, so the next ct scan will be much more exciting than the last ones.
how am i feeling. physically i am feeling quite good. almost no pain, no medicine. i can do everything i want. a good way to discribe me situation. i went running with some friend last sunday for 12 km with a pace of about 6:30 per km. this is much slower than some years ago, but it is running not walking. today i talked to my doctor about starting to work again. so we decided for me that i will going back to work for two hours a day from end of october to end of november and the every month one hour more. nobody knows how long this stable situation lasts.
how i am feeling mentally is difficult to describe:
i have a wife and a 3 month old baby son. so in one second i am not thinking of cancer and one second later i am feeling so sad cause i am asking myself how much time i will have left with my family.
actually the dry mounth is not a big problem, so i can handle it without any treatment
to you: i wish you all the best for your ct scan. i will keep my fingers crossed for you and hoping that our common journey will last a long time more.
how are you feeling actually? do you have any pain? what is your liveabilty?
TheGotchi
Reply # - October 3, 2016, 10:10 AM
Dear Louise,
Dear Louise,
Do you habe the results of your CT-Scan. I don't know how you say this in the US. In Germany we do pressing our thumbs.
All the best
TheGotchi
Reply # - October 3, 2016, 11:30 AM
Dear Gotchi,
Dear Gotchi,
I see I have confused you and myself on the date of the CT. I wrote Monday October 4, when I should have written Tuesday, October 4. So that means I will get the results late tomorrow afternoon. As soon as I have the result, I will let you know. Does "pressing your thumbs together" mean the same as crossing your fingers? I have a feeling it does. If so, thanks. I do have to say, I have had few odd reactions the last couple of days, including diarrhea and nausea. We will see.
Your partner in this journey,
Louise.
Reply # - October 3, 2016, 01:52 PM
Dear Louise,
Dear Louise,
ah, that's the thing. I just stopped reading after the word "monday". so my thoughts are with you tomorrow. and "yes", I think "pressing thumbs" means the same as crossing the fingers.
I think, that your odd reactions don't mean anything. I have always about one week before the CT-Scan different reactions. In my opinion it is just that we are some kind of nervous about the CT-Scan.
Best regards
TheGotchi
Reply # - October 6, 2016, 07:39 AM
Dear Gotchi and all others in
Dear Gotchi and all others in this study:
I just got the results from my latest CT scan of October 4. Everything is STABLE and I am feeling great. I will be getting my 6th infusion on the 18th of October. My dry cough and dry mouth have disappeared I suspect that it was the Tremi that was the cause. Now that I am getting just the Medi4736, those side effects are no longer an issue.
I also just learned, through modification to the terms of this trial, that we will now be able to receive these immuo drugs for as long we are getting benefit. Since insurance does not cover these expensive drugs, this is literally a life saver for those of us with this disease. Also, it has
now been expanded to 1850 participants in this trial.
Wishing good luck to everyone who was unfortunate to have this disease and fortunate enough to find the Mystic Trial.
Louise
Reply # - October 6, 2016, 10:18 AM
I see the relief in your face
I see the relief in your face (ok a little web based imagination needed but I saw it still :) )
Great great news.
Reply # - October 14, 2016, 05:14 AM
dear louise and all others
dear louise and all others reading this thread
i am very pleased with you. that's a really good result of your CT-scan. you found the right words earlier as you said that stable would be the new brilliant. you are so right.
i was planned for infusion no 12 for last wednesday. but as i told my oncologist that i had a dizzy spell while driving trough a tunnel last sunday he took this very serious and so he made a ct scan of my head on this day and it was not allowed to do both, the ct scan and the medi-infusion. i got the results the same day and there was nothing in my head ;-). my thesis: maybe there were some mets in my head, searching for my brain and after not finding it, they disappeared ;-). sorry for joking, but i am so happy with this result.
as a delay i got my infusion no 12 yesterday. everything went fine. next to me there sat a woman getting a very very new treatment for the third time, were they told that this could be a new breaktrough, but she was not able to name this treatment or trial, cause she was not dealing with it what i cannot understand. but for me it is a good thing that there would be maybe a "plan b" if the medi would have no effect for me anymore.
as you already know, my lust ct-scan was not a perfekt one (progression in some parts of the mets about 5 to 10%). as my oncologist says that this could be just a partial swollow up. so we have to focus on the next ct scan on november, 7th. infusion no 13 is planned for november, 10th.
good luck to everyone and a relaxed weekend.
TheGotchi
Reply # - October 14, 2016, 09:12 AM
TheGotchi, I love your
TheGotchi, I love your optimism!
My fingers are crossed for a stable scan next month.
Janine
Reply # - October 17, 2016, 08:50 AM
Hi Louise,
Hi Louise,
I have been on the Medi &tremelimumab trial at Yale since June. My first Ct scan in August was stable. I will get the results of my second CT scan next week. I am scheduled for an infusion of just Medi (5th infusion) next week. I too, have had a dry cough which is most noticeable in the morning...hopefully, it will also disappear when I start Medi alone...all depends on my scan results.
Hope to follow this thread on Cancer Grace. I have started one as well on INSPIRE which has had 62 replies.
Best wishes for continued success on this drug.
Terry
Reply # - November 11, 2016, 08:41 AM
Hello louise, hello catander,
Hello louise, hello catander,
long time no see. i hope you are all okay. after been in this trial for about one year sadly my mystic-journey ends now. the last CT-Scan from november, 7th showed progression in two of my spine-mets of about 50 (FIFTY !) % within 6 weeks. The rest is actually quite stable, but my onc decided to stop this trial.
so since yesterday i am on carboplatin, gemcitabin and biphosphonat. after this chemotherapy it is planned to make a new biopsy and check again for mutations. then we are hoping to start with nivolumab.
all the best for you all with this trial.
best wishes TheGotchi
Reply # - November 11, 2016, 11:07 AM
Dear Gotchi,
Dear Gotchi,
I'm so so sorry this is truly devastating I know. I have every hope that chemo will get you back on track for your next go round with immunotherapy. Who knows you may have great response on chemo that will take you a year to need your next plan.
Keeping you in my thoughts,
Janine
Reply # - November 15, 2016, 06:18 PM
Dear Gotchi and followers of
Dear Gotchi and followers of this Mystic Trial:
Gotchi, first let me say that I was sorry to hear that your trial has ended As of today, my trial has also ended. It was encouraging that you were 6 months ahead of me and still in the trial.
Now we both begin a new journey with chemo Like you my doctor is prescribing Carboplatin. She also is adding Alimta as a second chemo drug. I did get my first chemo infusion today.
Let's continue to stay in touch.
Louise