Mystic Trial Group thread: Immunotherapy drugs MEDI4736 and tremelimumab

Portal Forums Cancer Treatments / Symptom Management Immune-based Therapy / Vaccines Mystic Trial Group thread: Immunotherapy drugs MEDI4736 and tremelimumab

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

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September 28, 2016 at 11:30 am  #1288774    
lmlb7665
lmlb7665

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

September 28, 2016 at 12:34 pm  #1288776    
thegotchi
thegotchi

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


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, 1 month ago by thegotchi thegotchi.
  • This reply was modified 1 year, 1 month ago by thegotchi thegotchi.
October 3, 2016 at 10:10 am  #1288837    
thegotchi
thegotchi

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


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

– Terry Pratchett -

October 3, 2016 at 11:30 am  #1288844    
lmlb7665
lmlb7665

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.

October 3, 2016 at 1:52 pm  #1288845    
thegotchi
thegotchi

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


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

– Terry Pratchett -

October 6, 2016 at 7:39 am  #1288873    
lmlb7665
lmlb7665

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

October 6, 2016 at 10:18 am  #1288875    
catdander forum moderator
catdander forum moderator

I see the relief in your face (ok a little web based imagination needed but I saw it still :) )
Great great news.

October 14, 2016 at 5:14 am  #1288919    
thegotchi
thegotchi

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


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

– Terry Pratchett -

October 14, 2016 at 9:12 am  #1288921    
catdander forum moderator
catdander forum moderator

TheGotchi, I love your optimism!

My fingers are crossed for a stable scan next month.

Janine

October 17, 2016 at 8:50 am  #1288927    

sunshine4me

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

November 11, 2016 at 8:41 am  #1289153    
thegotchi
thegotchi

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


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

– Terry Pratchett -

November 11, 2016 at 11:07 am  #1289160    
catdander forum moderator
catdander forum moderator

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

November 15, 2016 at 6:18 pm  #1289192    
lmlb7665
lmlb7665

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

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