Mystic Trial Group thread: Immunotherapy drugs MEDI4736 and tremelimumab

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This topic contains 32 replies, has 5 voices, and was last updated by lmlb7665 lmlb7665 1 year ago.

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June 24, 2016 at 9:57 am  #1274475    
lmlb7665
lmlb7665

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

June 24, 2016 at 8:27 pm  #1274478    
JimC Forum Moderator
JimC Forum Moderator

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


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

July 30, 2016 at 10:20 pm  #1286738    
lmlb7665
lmlb7665

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.

July 31, 2016 at 8:32 am  #1286740    
JimC Forum Moderator
JimC Forum Moderator

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


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

August 23, 2016 at 8:09 am  #1288417    
thegotchi
thegotchi

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


Optimism is, in a thunderstorm on the highest mountain
to stand in a copper armor and shout “Fuck gods!”.

– Terry Pratchett -

August 23, 2016 at 8:53 am  #1288419    
lmlb7665
lmlb7665

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

August 23, 2016 at 11:35 am  #1288420    
thegotchi
thegotchi

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


Optimism is, in a thunderstorm on the highest mountain
to stand in a copper armor and shout “Fuck gods!”.

– Terry Pratchett -

August 25, 2016 at 10:05 am  #1288435    
lmlb7665
lmlb7665

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

August 25, 2016 at 7:01 pm  #1288442    
catdander forum moderator
catdander forum moderator

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

August 25, 2016 at 7:07 pm  #1288443    
catdander forum moderator
catdander forum moderator

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!

August 27, 2016 at 4:35 am  #1288449    
thegotchi
thegotchi

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.


Optimism is, in a thunderstorm on the highest mountain
to stand in a copper armor and shout “Fuck gods!”.

– Terry Pratchett -

  • This reply was modified 1 year, 2 months ago by thegotchi thegotchi.
  • This reply was modified 1 year, 2 months ago by thegotchi thegotchi.
August 27, 2016 at 4:39 am  #1288450    
thegotchi
thegotchi

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


Optimism is, in a thunderstorm on the highest mountain
to stand in a copper armor and shout “Fuck gods!”.

– Terry Pratchett -

  • This reply was modified 1 year, 2 months ago by thegotchi thegotchi.
  • This reply was modified 1 year, 2 months ago by thegotchi thegotchi.
August 27, 2016 at 6:52 am  #1288454    
lmlb7665
lmlb7665

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

September 15, 2016 at 4:30 am  #1288618    
thegotchi
thegotchi

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


Optimism is, in a thunderstorm on the highest mountain
to stand in a copper armor and shout “Fuck gods!”.

– Terry Pratchett -

  • This reply was modified 1 year, 2 months ago by thegotchi thegotchi.
  • This reply was modified 1 year, 2 months ago by thegotchi thegotchi.
September 15, 2016 at 6:06 am  #1288621    
lmlb7665
lmlb7665

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

September 15, 2016 at 6:30 am  #1288623    
JimC Forum Moderator
JimC Forum Moderator

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


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

September 15, 2016 at 6:56 am  #1288625    
lmlb7665
lmlb7665

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

September 15, 2016 at 11:42 am  #1288629    
catdander forum moderator
catdander forum moderator

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 :)

September 15, 2016 at 11:59 am  #1288631    
lmlb7665
lmlb7665

Thanks. That is a great idea.

September 28, 2016 at 10:24 am  #1288772    
thegotchi
thegotchi

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


Optimism is, in a thunderstorm on the highest mountain
to stand in a copper armor and shout “Fuck gods!”.

– Terry Pratchett -

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