TAK-788 Trial

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scohn
TAK-788 Trial

Well, here we are, barring any last minute complications my wife should start the TAK-788 trial next week. She has already had her main blood work and a CT scan. All she needs now is an updated brain MRI and a blood test for magnesium and bilirubin.

The trial oncologist sounded very optimistic, and said they were having good success with the drug so far (as Jim posted with the ASCO results). Main side effects so far have apparently been diarrhea and an acne-like rash (especially for people who spend time in the sun). And no steroids! So hopefully less sleepless nights and a bit less heartburn (although you can’t take any acid reducers on this trial, probably worried about effects on drug uptake since it is a pill). It’s a small molecule TKI, designed to bind more tightly to the Exon20 mutations than to the normal EGFR or HER2. And apparently the EGFR cohort for the trial is full, but they need more HER2 patients, so my wife is once more plunging in to help science!

So onward we go – treatment line #5. I’ll update after next week (for first day of trial my wife has to spend all day at U of C – the drug in the morning and blood draws every hour to measure release of drug into bloodstream).

catdander
Scohn,

Scohn,

I’m hopeful that your wife will respond well to tak 788. Let us know when y’all find some names for it.

Fingers crossed,
Janine

onthemark
scohn,

scohn,

It’s wonderful that your wife has the chance to take part in this trial and I hope you see terrific results!

scohn
Sigh…why can’t things be

Sigh…why can’t things be uncomplicated….

Trial has started today, all is good, and my wife has taken her first dose of the pills. All is good except…we got a report of the MRI and apparently there are three small suspicious spots on the brain. Since the spots are so small, and my wife is completely asymptomatic, she is still in the trial, and in the “non-CNS involvement” cohort. But, now we wait to see what the MRI looks like in 8 weeks. The good news is that some recent studies suggest TKIs do a fairly reasonable job of treating targeted brain metastases as well, so this drug may deal with those small metastases as well. But at this point we begin to worry what if the TAK 788 works on the lung and liver and not the brain – do we still get to stay in the study if we have to do some radiation on the side?

There is something about “brain” that just feels different – gives you a different kind of shock. But, in reality, it’s just one more bump on this ragged road we travel…..

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane.

scohn
My wife felt a bit better

My wife felt a bit better after talking to the trial PA. The PA said the amount of cancer in the brain is extremely low, the trial drug does cross the blood brain barrier, and the results of the drug so far have been extremely encouraging.

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane.

catdander
There is something about the

There is something about the brain…
Before stereotactic radiosurgery there was little hope of treating brain mets past wbr. And now there are tki’s showing efficacy in the brain. I see 2 places for hope, the trialists have the capability to keep your wife on the drug to see if it works in the brain or let your wife take a brake for radiation then return to the trial.

I’m so sorry about the mir results and hope they stay put.

Sending vibes and hugs,
Janine

scohn
After talking to the PA we

After talking to the PA we are staying on the trial. But I suspect I am going to be very nervous in 8 weeks when it comes time for the new CT and MRI.

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane.

catdander
of course. I imagine you’ll

of course. I imagine you’ll be stressed most of that time. I know too y’all will be taking the moments of joy when they come.

scohn
Moments of joy indeed! The

Moments of joy indeed! The blueberry/berry cheesecake I made for our anniversary last weekend may not last for another 8 weeks, so I may have to make a couple more!

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane.

Jim C Forum Mod...
Jim C Forum Moderator's picture
scohn,

scohn,

If only current technology would allow you to upload more than just a picture of that beautiful cheesecake!

I’m sorry to hear of the MRI results, but it’s great that your wife is able to stay on the trial and that the trial drug has shown evidence of good CNS penetration.

We’ll be looking forward to your update in 8 weeks describing a clean follow up MRI.

JimC
Forum moderator

scohn
Well, we won’t know how the

Well, we won’t know how the drug is doing for a while, but the side effects are certainly starting – all manageable so far, but certainly more than Gemzar and different than POSSIBLA.

So for anyone else considering/starting the trial – here is a side effect update for day 4 – more along the lines of the Carbo/Alimta (but without the general 2nd day ache/crash – so I assume it isn’t affecting blood cells so much). Off and on diarrhea (no constipation as with POSSIBLA), some lip/mouth sores, and some heartburn. But luckily, like all of the other chemos, my wife has had no nausea at all! And, if other TAK patients are any indication, my wife is likely to start seeing some of the Acne-rash in about a week. Definitely seems like the side-effects are indeed like what I have read for the other TKIs.

However, the previous chemos has prepared us with our arsenal – Imodium/Pepto for digestive issues, numbing cream for lip/mouth, and some TUMS and watching out for spicy foods for heartburn (alas no acid controllers for the trial, as they need to try and standardize uptake, and reduction of stomach acid can affect drug uptake).

One thing we forgot to ask the trial oncologist was why the dosage is set, and not based on body weight (as all the infusion medications were, and my wife is rather petite) and if the dosage can be reduced on a Phase 2 trial if the side effects seem to be limiting at some point. But we will be seeing the oncologist again within the next few weeks, and the PA each week, for those and more questions we may have.

My wife has also noticed that she has to be very careful to swallow the 8 capsules one at a time, each with a lot of water, as the capsule coatings apparently cause the capsules to stick to each other, and they can get caught in your throat if each one doesn’t make it all the way down.

But, it certainly reminds me every day how amazingly strong and courageous my wife is!

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane.

onthemark
Hi scohn,

Hi scohn,

I hope your wife’s side effects continue to all be manageable and she gets a durable response from TAK-788.

For HER2 Exon 20 lung cancer, I am wondering if you have heard of “Ado-Trastuzumab Emtansine for Patients With HER2-Mutant Lung Cancers: Results From a Phase II Basket Trial”

http://ascopubs.org/doi/full/10.1200/JCO.2018.77.9777

I don’t know if this is a different type of treatment modality than you have already tried, but maybe it could give you another option down the road.

Your cheesecake looks yummy!

scohn
Thanks onthemark! I hadn’t

Thanks onthemark! I hadn’t seen that one yet!

I have been keeping my eye on T-DM1 ever since the European HER2 study review showed it to be much more effective than afatanib, with a response rate of about 50%. It basically works much like my wife’s first trial drug, although that one targeted PTK7 (an adenocarcinoma target) rather than HER2. The European HER2 study showed the regular EGFR TKIs really weren’t that effective against HER2, which is why we will be anxious to see if the trial TKI my wife is on, designed specifically for Exon20 mutations, is (we hope!) a lot better. Since the antibody of T-DM1 targets the normal portion of HER2, it is thought (but not really known) that it might work better against amplified HER2 cancers (where there are a very large number of HER2 receptors on the cancer cells).

I have also mentioned T-DM1 as a future possibility for a friend of ours who has persistent HER2 breast cancer – it a rare form that shows up as a rash rather than any tumors, so the only way to treat it is to remove the affected area of skin and then treat with Herceptin or other anti HER2 drugs, and then just wait until it shows up again. There is a trial using T-DM1 for just that type of cancer, but it is overseas.

Glad you like the cheesecake! My wife loves cheesecake, so I often make one for our anniversary. Here is a lemon one from a couple of years ago.

Thanks again! scohn

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane.

catdander
Oh dear that looks more

Oh dear that looks more scrumptious than the first.

I learn so much from the conversations between you two, onthemark and scohn. I wish y’all didn’t need to be in the trenches looking for the next best thing though.

onthemark
Hey janine and scohn,

Hey janine and scohn,

I personally vote the 1st one, haha…

it reminds me of the cheesecake my mother used to make before she sadly died of concurrent breast and colon cancer at the age of 51. My sister still makes that recipe. Yours looks very similar! It’s a bit lighter than the new york style cheesecakes, not too sweet and extremely creamy. Yum!

My mom was the reason I had . a bunch of tests for various cancers after I quit smoking at the age of 52 (she never smoked).

It was a random xray that picked up my lung cancer early so I was able to have surgery. So for me, cheesecake was already very intertwined with cancer and life in general…

Mazel tov

catdander
Haha, I attribute my baking

Haha, I attribute my baking skills to my mom. Not that I learned from her but that if we wanted desert us kids had to make it, so we baked a lot as kids. She was otherwise busy raising 5 kids and working full time.

Those cheesecakes are so picturesque. What are the yellow balls between the stars of cream. And the threads of lemon zest marbled on top…ohhhh.

scohn
Janine, Jim, and onthemark.

Janine, Jim, and onthemark.

Just another quick thank you for, well, just being there. It’s a frightening and draining experience dealing with these wretched diseases, and it is so helpful to have others around to listen and help. So, thank you. I’m sure I will be saying that a lot more times…..

And you have all been so nice, I’ll give you a nice batch of homemade truffles. Perhaps that’s what I’ll do when I retire – sell some “Confections for Cancer – Help take a bite out of the disease!”.

All the best,
Scohn

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane.

catdander
Stop it! That’s a great idea

Stop it! That’s a great idea and you already have the hook.

Anonymous (not verified)
Hi, I am new here and have

***(ADMIN NOTE -- This post is from TARJONES, who is somewhat new to GRACE. Due to the newness of the account, the account did not transfer over to this new site, so the authored by info will show as anonymous (my apologies). When TARJONES re-sets up their account, I will set the authored by field to them so this post is attributed correctly.***

 

Hi, I am new here and have not posted on sites before but I wanted to do so this time because I think I may be able to give you some good news. My mother in law who has had stage 4 adenocarcinoma Exon 20 since January 2015 started Tak 788 last December. This is her 5th line of treatment as well. Her first scan mid Feb showed a little shrinkage (but not much.) Each of the 3 scans since have been stable! She has all of the side effects that you listed with diarrhea definitely being the worst for her. She has gone on a family vacation, a 10 day road trip and plans to go to Hawaii in November. In December, when she started this trial, we really thought our time with her was coming to an end. She has malignant pleural effusion in both lungs and had the talc procedure in mid November. Her recovery was tough but by her first scan in Feb, she was again able to go places, drive, garden and live alone. Keep good thoughts and try not to worry too much about the first scan. This drug really seems to be helping people and I hope it will be the same for your wife. I have spent a lot of time scouring sites for information on this trial and was never able to find anyone posting about their results. I wanted to make sure you know that their are very successful results out there!! I wish you and your wife the best. Please let me know if you have any questions about our situation as I will do my best to answer.

Anonymous (not verified)
(TARJONES) One more thing I

(TARJONES) One more thing I forgot to mention….my mother in law too had issues with these pills as they kept getting stuck in her throat. She now takes them with a clear gelatin that they sell in the drugstore aisle by the pharmacy. I do not know the name but can get it if you need it. It has been extremely helpful for her. You just mix a little of it with water and make a gel and then swallow a spoonful with your pills.

Anonymous (not verified)
(TARJONES)

(TARJONES)
Hello again!
The item she uses to help with the pills is called Thick-It and it is a food and beverage thickener but like I said, I purchased it for her one time right in the pharmacy section of CVS. She was taking the pills with yogurt to get them down and when her Dr. heard that, he suggested Thick it as you are not supposed to eat anything with the pills, even a spoonful of yogurt.

Her trial is at Stanford. She has been on 2 standard first line chemos (like Cisplatin) that worked for about 18 months. She then tried the poziotinib clinical trial at UC Davis and it worked for about 6 months, then Gemzar which did not work at all and finally this trial.

She has mets to her scapula, pelvis, femur, adrenal gland and many lymph nodes. She too has never smoked.

I wish your wife success with this trial. Thank you for your good wishes. I like the new name for the trial! It sounds powerful!

Jim C Forum Mod...
Jim C Forum Moderator's picture
Hi tarjones,

Hi tarjones,

Welcome to GRACE. Congratulations to your mother-in-law on her great response to the trial, and thank you for sharing the information on her experience with the drug. It's extremely helpful to the GRACE community to get a first-hand perspective on a new regimen.

I hope that your mother-in-law's response lasts for a very long time. Thanks again for your post.

JimC
Forum moderator

scohn
Dear tarjones.

Dear tarjones.

Thanks so much for the info! It is nice to know that there others out there on this same trial! My wife says making sure to take the capsules slowly one at a time has helped a lot for her. I'll let her know about the gelatin (where did you hear about that?). Even better to know that it has kept your Mother-in-law's tumors stable! Hopefully it will work as well for the HER2.

By the way, what were her other 4 prior lines of treatment? Where is your trial location?

The diarrhea has been bad off and on, but the worst has been the mouth sores and swollen/sore lips. The doctor told her they are actually not mouth sores but something else, I think it's more of like mouth acne sores. They prescribed minocycline for her and said if the side effects aren't better next week then they will reduce the dosage. They also gave her a mouth rinse she can use 4 times a day, and said she can rinse with a saline as often as she needs to. My wife is rather petite, and the doctor said that the dosage is initially the same for everyone, so she has the same dose as a 220 pound man, and reducing the dosage isn't a problem, and they have found very good effectiveness even at lower dosages. Now we just have to see if it has any effect on the brain lesions as well.

It hasn't kept her from normal activities, and we are going on a short trip this weekend, and are planning a longer trip to perhaps Vancouver later in the fall/winter.

In fact, she had some metastasis to the hip just before she went on Gemzar, which went away right with the Gemzar. Her hip pain seemed to be flaring up a bit again about 3 weeks after being off Gemzar, but seems have gone again about 2 days after she started on TAK 788.

All the best to you and your mother-in-law for a strong and sustained response!

And I have come up with perfect name for TAK 788: Eicossa (from the Greek for 20) or Excossa (if you want to get the Exon bit in there).

Best regards, scohn

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane.

scohn
OK - one more time! My wife

OK - one more time! My wife just started at the lower dosage (120 mg) yesterday, and now we see how it goes! A little diarrhea so far, but it started much longer after taking the pills. There's some heartburn too. So, on we go, and we'll see what's what!

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane.

catdander
catdander forum moderator

catdander forum moderator wrote:

Thanks Scohn, I hope the reduction proves helpful.
Fingers crossed!

scohn
Hooray for Famotidine!

<p>My wife had her weekly check up yesterday and got permission to take famotidine (as long as, like food, it is not taken within 2 hours of taking&nbsp;the drug). &nbsp;They all thought that the &quot;stuck in the throat&quot; effect was due to acid reflux. &nbsp;So, my wife took the famotidine 2 hours before taking the pills and she said it went so much better! &nbsp;Pills went down, no &quot;I feel like I can&#39;t eat anything&quot; feeling for most of the day, and just much better general feeling overall. &nbsp;And she said that the diarrhea now seems to be localized to once or twice a day, at the same time, so a little pre-emptive lomotil or imodium and that seems to be mostly in check as well so far. &nbsp;Mouth seems to have dryness but no sores, and regular rinsing with salt water seems to keep that in check as well. &nbsp;Next week is the one month all day check up again, so we will see, but at least for the moment, it looks like the 120mg dosage will be tolerable, at least in the near term. &nbsp;The next few days will tell!</p>

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane.

JanineT Forum M...
I'm so happy to hear she

I'm so happy to hear she feels better! It's everything (and I don't think that's necessarily hyperbole).

Next few days will tell the tale.

scohn
One Month Down

My wife just had her one month full day test (they draw blood almost every hour for 8 hours to measure drug uptake into the blood, and take several ECGs). Luckily that's the last full day. She has one more blood draw today, then, if all goes well, just a check up every month.

Side effects are still pretty rough (but much better than higher dosage) but my wife says they are tolerable, at least for a month until we see the next CT/MRI results. Some diarrhea still 2-3 times a day, even with Imodium and lomatil, and more if she isn't careful not to eat anything with a lot of roughage or overly spicy. But she can at least eat things now, supplements if needed with pedialyte, and isn't dehydrated at all. The mouth is dry, but no mouth sores/infections, but the infections have gone from upper to lower, and she now has some infections in the toes of her feet (which have a lot of cracking). So, lots of salt soaking and antibiotic and anti fungal ointments for the feet. Some small skin rashes, but at the moment those seem to come and go very quickly, although she says when they go they leave patches of very dry skin.

So, hopefully the toe infections can be kept under control, and the rest of the side effects also manageable. Hopefully it is as my daughter says "If it's doing all that to your normal cells, just think of what it's doing to the cancer cells!".

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane.

scohn
Update on CT Scan

Well, as before, the CT results are mixed. Main lung tumor, adrenal glands, lymph nodes all stable, but liver metastases are enlarging. She had an MRI on Friday, and we will get the results of that tomorrow when we meet with the trial doctor. I suspect with the liver metastases increasing she will be kicked off of the trial.

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane.

JanineT Forum M...
Scohn,

Scohn,

I love and hate mixed results, wishing they were all good but relieved they were mostly good. If the trial is over are there any trials recruiting or chemo options like reuse carbo or immuno/chemo mix.
Keeping y'all in my thoughts tomorrow, I know how tough holding your nerve must be for you both.

scohn
Update on TAK788 Trial

So.... my wife was not technically thrown out of the trial, as by the trial standards the average tumor increase was only 17% (20% gets you kicked off of the trial), but that is because it averages in the main lung tumor (which didn't increase at all) and the liver tumor (the two measured on CT increased in volume somewhere between 50-100%). Brain lesions also completely stable (big relief there). So.... we have a treatment with pretty severe side effects in which some tumors seem stable and others completely unhindered. The trial doctor suggested that given the pretty severe side effects, and the only partial effectiveness, it would be best to go off the trial now (since at the same growth rate we would be kicked off at the next CT anyway) and try for something else.The doctor suggested that my wife go on a new trial, which is one of the ones that is tryinf nivolumab woith other "mabs" to try and enhance the immune system's recognition of the cancer.  The idea is that they take a new biobsy, do histochmeistry to see which target proteins are on the cancer, and then based on the biopsy treat in one of the seven test arms of the trial. Real semi-personalized medicine.  They would also do sequencing on the new biopsy to see what other mutations might have accumulated in the liver.But the downside- definitely more experiemental - they really don't know how well any of these combinations are working - and the treatment does not cross the blood/brain barrier - so would have no effect on the brain lesions.So we need to decide - a more clasical chemotherapy (like Gemzar which had been working, plus possible liver radiation) or the new trial.So (lots of so's today) a lot of checking up on the new trial protocol, but if anyone has insights or information on any of these nivolumab "plus" trials, we would appreciate it.Thanks! 

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane.

scohn
As well as.....

Also talked to the good folks at the Exon20 Group today, and the head of the group was really pushing for my wife going into a Poziotinib trial, but it is in Houston. They indicated that several people who progressed on TAK788 have entered the trial and really showing good responses. Sheesh! So much to think about.

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane.

JanineT Forum M...
My sister in law has (or

My sister in law has (or maybe had since harvey) a rental in houston so when i read your post I thought how nice it would be to have a place to live while in a trial across country. That brought me to wonder what if there were grant money say from the testing pharma to pay for the rental while people were on a trial. The person who owns the house would receive the grant money and keep it occupied. Maybe someone who already has an airbnb for comers and goers of any length of time. It's tough enough to know there's a promising treatment but it takes you away from home life. I'm sorry y'all are going through this. I'll ask Dr. West if he has any input.

Dr West
Trials of nivolumab (or other immunotherapy) with targeted agent

Unfortunately, to my knowledge we have very little data speak to combinations of immunotherapy agents, especially in patients with a driver mutation. It's a real unknown, which isn't to say there isn't promise, but we've not yet seen enough data to say that this is or is not likely to pan out.

Good luck!

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

scohn
Thanks & Update

Thanks Dr. West and Janine - I really appreciate it! We are still in the midst of deciding what to do, but basically have looked over the ADVISE trial, and based on everyone inputs it just reinforced our own sense that it is really a very exploratory trial, particular with driver mutations, so we have mostly ruled that out and want to try something a bit more focused in the meantime. My wife's hip has started to act up (within 3 days of going off of TAK788) so we are pretty sure the tumor there is acting up again. So, at the moment we are looking at a docetaxel/ramucirumab combination either right away or after hip radiation, probably going for the former. My wife really likes how she feels after getting off of the TAK788 and is not anxious to start that up again with the poziotinib. At the same time, poziotinib is looking very promising, so we are hoping that it will still be available if needed after the taxel. But we should know what we are doing by the end of the week. Thanks again everyone!

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane.

Jim C Forum Mod...
Jim C Forum Moderator's picture
TAK-788 trial

Hi scohn, In addition to the Houston trial, there is another poziotinib trial now recruiting in New York and Seattle, if either of those locations is more convenient. You can read about it here: https://clinicaltrials.gov/ct2/show/NCT03318939?term=poziotinib&recrs=ab... If you try the docetaxel combination first, it would be worth checking both of these trials (and any new ones that pop up) on a regular basis to see if new locations are added. Good luck.
Jim C Forum moderator

scohn
Time for New Thread!

Thanks everyone for your help!! Well, the decision has been made now, and my wife is going to go for the docetaxel/ramucirumab treatment, probably starting the week after next. She is going to go in for initial blood work and talking to the oncologist on Friday, but I don't think the actual treatment will start until a week or so later. Hopefully the hip pain will respond to treatment as quickly as it did with the Gemzar and TAK788. And we were happy to see a number of studies that showed the anti-angiogenesis drugs work in the brain. My wife is feeling much better now that she is off TAK788, and felt this approach would be more likely to give a good response with less side effects in the short-term. Jim - thanks so much for the info! Unfortunately, I think most of the main poziotinib trials are under a protocol that excludes people who progress on TAK788. The one in Houston is being done by one of the developers of poziotinib I think, and in any case he is under a researcher-driven protocol that gives them much more flexibility and allows those who were progressing on TAK788. So, once more into the breech - treatment line #6....

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane.

Jim C Forum Mod...
Jim C Forum Moderator's picture
Time for a new thread

Hi scohn, Sending best wishes for a great, durable response and good tolerability. And we'll look forward to your next good-news update. Jim C Forum Moderator

scohn
Abraxane

<p>Thanks for the good wishes Jim!</p><p>So, after talking with her oncologist, my wife decided to go with the taxol/ramucirumab combination. The oncologist said he is going to try to get approval with Abraxane, which seems to have a much better toxicity profile than the docetaxel. It would probably start next week or early the following week. Oncologist suggested there are lots of potential side effects to the ramucirumab.</p><p>But, he suggested that he would like to have her on the double immunotherapy trial treatment at some point.</p>

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane.

Jim C Forum Mod...
Jim C Forum Moderator's picture
Abraxane

Hi scohn, I would agree that if you can get approval for Abraxane, it may be much easier to tolerate. Liz's doctor got it approved for her, and it proved to be just as easy to tolerate as Alimta. Jim C Forum Moderator