OK, so I decided to start a new segment on Poziotinib, because....it seems to be working!
My wife had her first check-up after taking Poziotinib and her bilirubin is at about 40% of the peak of a couple of weeks ago. AlkPhosphatase is down about 25%. Albumin is back up to about 50% of normal. Total Protein is back into the normal range. So, we are now offcially in the ninth(?) line of treatment, and hopefully a step or two back from potential crisis. The Blood cells are still a bit wonky (RBCs low, WBC a teensy high, Lymphicytes low) but we don't know how much of this effect is due to the steroids to keep the Poziotinib rash down. The oncologist wants to start the double dose (8mg twice as day) starting tomorrow.
So, we will see what happens, but after a few months of scare, we now, once more, have some hope for a bit of a future. The first CT Scan will be in 6 weeks.
Tue, 04/14/2020 - 09:23
That's great Scohn! I'm so happy to hear the 9th (let's call it ninth) round is working. That was quick. I like the idea too that if the double dose becomes too difficult she has the hope of less working too. Keep us posted on the side effects and how her other symptoms are fairing. I look forward to good scan results.
Thu, 04/16/2020 - 08:21
That's so terrific to hear this good news, scohn! I'm glad you started a new thread, because the previous one ended on a down note, and I see this one as the sun rising on a beautiful new day, full of hope. As Janine said, keep us posted!
Sat, 04/18/2020 - 13:53
So, the double dose is starting to show its effects. Some drastic drying/cracking of skin, some mouth soreness (but no real mouth sores yet), and pretty bad diarrhea. Lots of topical and antibiotic lotion and they said she can up the imodium. So, it should be mamnageable if she can get the diarrhea under control. It is certianly wreaking havoc on her digestive system and wiping her out. She is taking electrolyte drinks to keep her energy and electrolytes up. But it still seems like a lot less side effects than the TAK-788. We have a video meeting with the oncologist on Monday, so we will see what they say.
Sun, 04/19/2020 - 10:01
I hate to hear about the side effects. Glad y'all have the conference call tomorrow.
Mon, 04/27/2020 - 13:57
The Pozi was reduced for a few days to get the diarrhea under control (now very manageable) and they are now going to try 12mg/dy (up from 8). But the good news is that today's blood tests show the Pozi is still working! The bilirubin is down again (ever so much closer to normal) and total protein and albumin levels are improving and liver enzymes are also plunging back down to normal! I will be anxious to see in 4 weeks exactly how much the Pozi has done to the tumors themselves, including the lesions outside the liver.
Still some side effects (mouth/skin sensitivities), but as I said before, SO much better than the TAK-788 side effects. And more imprtantly, it works.
Tue, 04/28/2020 - 11:16
Wow wow wow, That's so incredible! I'm so happy for y'all. I hope you both can do a little happy dance each day.
My fingers will stay crossed for her continued improvement. :)
Wed, 04/29/2020 - 15:49
Yes, we're crossing fingers, toes, elbows, anything we can find.
Tue, 05/12/2020 - 11:31
Had new blood test this week - Poziotinib is still working! SGPT and BUN now in normal range. Bilirubin and Albumin and Protein better and almost in normal range. SGOT and Phosphatase lower and stabilized, but still above normal range. Both Lymphocytes and Neutrophils now back in normal range. RBC and platelets stabilized but still a little low. The only problem has been the potassium (and sodium a little) which have been a bot out of whack due to all the diarrhea (still a problem). They are probably going to cut the dose back down to 8mg/dy and then see if they can raise it to 10 mg/dy.
But, overall it is clearly working and in another couple of weeks we will have the CT scan to see what's what.
The other news is that they think my wife has stabilized enough that they can do the spot SBRT on the brain lesions. I think before the Poziotinib the oncologist felt the liver situation was so dire that there was no need to work on the brain lesions until everything else was under control. They will wait for the CT scan to see if the Poiziotinib has reduced the brain lesions at all first, and then if not they will schedule the SBRT.
So - we made it through Mother's Day! (I made one of those cheesecakes!) Our daughter is back in the US and in quarantine, but just a block away! One day at a time!
Wed, 05/13/2020 - 10:50
It sounds like a lot of excellent news! I'm so happy for your family. :)
BTW: You'd be surprised at how often I've thought about your cheesecake. I know...!
Fri, 05/15/2020 - 21:42
Well, just in case you are interested, here is the recipe.....
Layered Lemon Cheesecake with Brown Sugar Almond Crust
1 1/2 cups almond flour
1/4 cup brown sugar
3 tablespoons melted butter
24 ounces cream cheese, room temperature
1 cup sugar
2 teaspoons vanilla extract
3 tablespoons fresh lemon juice
1 tablespoon lemon zest, finely minced, this was the zest from 1 large lemon
Sour Cream Topping Ingredients:
2 cups sour cream
1/4 cup sugar
1/2 cup sugar
2 tablespoons arrowroot or cornstarch
1/2 cup water
6 tablespoons fresh lemon juice
Preheat the oven to 350 degrees. Combine the almond flour, brown sugar and butter in a small bowl and stir to combine. Press the mixture into the bottom of a 10" springform pan. Bake for 8-10 minutes. Cool 30-45 minutes before adding filling.
Beat the cream cheese with an electric mixer on high speed until it is completely smooth. Add the eggs, one at a time, beating until smooth after each addition. Slowly add the sugar, beating until smooth and then adding the lemon juice and vanilla. Beat again and then stir in the lemon zest.
Pour over the cooled crust and bake for 35 minutes, until set, but not browned. Stir together the sour cream and the sugar and let rest on the counter while the cheesecake is baking. Remove the cheesecake from the oven and gently spread the sour cream mixture over the top. Return to the oven and bake 12 more minutes.
Remove from the oven and cool on a wire rack for half an hour. Then transfer to the refrigerator and cool for about an hour, until the topping is cool, but not completely chilled. The middle will likely settle somewhat. While the cake is chilling, make the final glaze. Combine the sugar and arrowroot in a small saucepan. Whisk in the water and lemon juice. Bring to a boil, whisking constantly until thickened. Cook 1 minute and then let cool.
Pour the cooled glaze over the cool cheesecake and spread to cover completely. Chill overnight. Top with any berries just before serving, if desired. Enjoy!
Sat, 05/16/2020 - 10:40
If you could see me now...This is making me smile so big I have a tear running down my face.
I'll post a picture. I love the lemon everywhere in the recipe. The crust sounds yummy too.
Wed, 05/20/2020 - 20:55
Glad you like the recipe.
Now as for the news.....
Turns out that prior to today my wife had not had a CT scan since February. So, today's scan was, um, not good? That is, compared to February, the scan was a bit worse, even though the blood chemistry is getting better. Oncologist thinks that the tumors in the liver got much worse during Feb-May, so the current reading is probably better than they were when the Poziotinib started. I mean in general, other than the Poziotinib side effects, things are much better than they were 2 months ago.
One small high point - the brain lesion is slightly smaller.
So, what to say. Overall, the liver is about the same as it was 3 months ago, as is the blood chemistry, but we have no CT scans to see how bad the lesions got during the bilirubin peak. Her health is generally better (rash, exhaustion, edema, jaundice are all gone), so we know the poziotinib is working, but I guess we really won't know how well (on the physical lesions) until the next CT scan.
But, because things don't look worse in the brain, and perhaps a teensy bit better, they will likely be going ahead with the SBRT.
Fri, 05/22/2020 - 11:39
It's wonderful news that your wife feels better with a host of issues clearing up. That's Great! I hope y'all can use that as the takeaway and "assume" that tx is working well to decrease the tumors.
I understand what you're saying about the scans and how you'll not know how the poziotinib is really doing until the next scan. All the signs point to it being a success though. I remember the stress of waiting for results. But then to get there and not even have a scan to compare with must be super frustrating. I suppose you can blame it on the virus.
Even without a good comparator the goal is to feel better and have options. I'm hopeful,
Sat, 06/27/2020 - 09:18
My wife just had a CT scan and blood tests this last week, and well..not so good. CT scan showed progression everywhere - lung, liver, and brain. Blood work also showed that the bilirubin is again going up (although most of the other liver enzymes are stable). Her coloration is definitely again showing jaundice, although the body rash and edema she had before aren't showing up.
The oncologist talked to the specialist in Texas and the specialist had two suggestions - one was what he had talked about at our meeting in March, using Kadcyla along with the Poziotinib (some initial possible evidence that it works better with/after Poziotinib) and he thinks a new drug Enhertu might be even better, but we have to get special permission to use it (currently OKd for breast cancer but not lung cancer). So, my wife starts on some Kadcyla next week, and will probabkly switch to Enhertu once we get permission for it.
Sat, 06/27/2020 - 11:24
Scohn, This all sounds scary. I hope your wife isn't experiencing much in the way of side effects and symptoms. I imagine you 2 have taking care of one another pretty well figured out and I feel like y'all do an awesomely good job of it.
I'm glad she has more options and is able to take advantage of the most up to date of them. I'd think you could write the book on how to get the optimal health care.
I'm sending virtual hugs and good vibrations your way. Good luck with the coming treatments. I'm hoping they work.
Sun, 06/28/2020 - 11:44
I agree with Janine that a primary concern at this point is minimizing symptoms and side effects in order to keep your wife comfortable. I hope that you can get an approval for Enhertu quickly, and I see that it has been granted Breakthrough Therapy Designation for HER2 positive NSCLC (https://www.astrazeneca.com/media-centre/press-releases/2020/enhertu-granted-breakthrough-therapy-designation-in-the-us-for-her2-mutant-metastatic-non-small-cell-lung-cancer.html ) and displayed good early results at a presentation at this year's virtual ASCO conference a month ago: https://www.astrazeneca.com/media-centre/press-releases/2020/enhertu-demonstrated-meaningful-clinical-activity-in-patients-with-her2-mutant-non-small-cell-lung-cancer.html
As always, keeping you and your wife in my thoughts.
Jim C Forum Moderator
Tue, 07/07/2020 - 10:25
This will be the last entry in the Poziotinib section (probably) as my wife got approval for Enhertu (after all those exciting drug names - who came up with this one - based on En-HER2, so boring...). So, as usual, for anyone taking the time to read the thread I offer my thoughts on the pros and cons and side effects of Poziotinib.
It clearly, and literally, was a lifesaver for my wife. We had be given the "talk" by the oncologist in case the Pozi didn't work, and had more or less been given 4-8 weeks for Sara to live. Within days of getting the Poziotinib the whole body rash went away, the edema started going away, and her coloration started to get better. Within 4 weeks her liver blood enzymes were almost back to normal. It seemed (at the blood chemistry level) to work well for about 8 weeks, then less so.
The dosage for Pozi is definitely tricky. While the maximal dosage of 8mg twice a day is what to shoot for, most people apparently end up at 12 mg, and for many the side effects are less at 6 mg 2x a day. My wife found (as apparantly some others have too) that the heartburn side effect is actually better taking more at night - 0,2, or 4 mg in the morning and 8 mg at night. Apparently, since Pozi is a kinase inhibitor, the cells start generating an increase in the HER2 kinase to compensate for the inhibition. Thus, it was not surprising that the 8mg my wife started with (and was effective) stopped working well after a while. But the side effects definitely go up with dosage. For my wife, the diarrhea at 12 mg was almost unbearable (and difficult to control) while that at 8 was much more manageable. On the other hand, whenever she tried reducing the dosage she felt much worse (more gneral aches and pains and lethargy) at the lower doasge than the larger dosage, even though the diarrhea was better. Whether this was due to the cancer itself being less restrained at the lower dosage, or some realteration of body side effects is hard to know. So, my wife was trying out a 10 mg one day followed by a 12 mg next day regimen when the Enhertu was approved.
The effectiveness of the Poziotinib is hard to gage - definitely great effect on restoring liver function at 8mg, then 10mg for a couple of months, and then the liver function deteriorated until she had a little time at 12mg. But, throughout the time of Poziotininb there appeared to be no constraining the actual size of the cancer, and during the time the liver function started to decrease again there were definite increases in size and number of cancer lesions. Whether or not the cancer stabilized as the liver function stabilized reamins to be seen.
So, onward to Enhertu! The preliminary data is extremely encouraging, as this, like Kadcyla, is directly focused on HER2 cells, but also seems to work for patients who progressed (like my wife) on Kadcyla. Moreover, there is some thought that the increase in HER2 receptors on the cancer cells that are stimulated by Poziotinib might actually increase the effectiveness of Kadcyla and Enhertu, since they bind directly to HER2 receptors (then get into the cell and deliver a poison, although they each have a different poison).
So, today is the first Enhertu infusion - I will keep everyone updated on how it goes!
In reply to On to Enhertu! by scohn
Mon, 08/24/2020 - 12:29
Hi, I also have stage IV lung cancer with the HER2 Exon 20 mutation. I was diagnosed back in July of 2019 and then had 5 treatments of Carbo/Alimta and then the end of December of 2019 started Alimta Maintenance which kept me stable, but in July 2020 I had to stop those treatments due to increased creatinine levels. So at this time I am not on any treatment but in the phase of watch and see when progression happens. A specialist I visited this month said at the time of progression enhertu may be a drug for me to use. But what I am wondering is how you got approval to use it without being in a clinical trial? I am just worried about how hard it may be to get when the progression happens. I could use any information you could give me. Thanks so much.
In reply to Enhertu approval use by email@example.com
Sun, 08/30/2020 - 13:43
So sorry to hear about your cancer, and my appologies for taking a bit to reply. I hope the Carbo/Alimta worked well for you. My wife had 6 rounds when she first got the diagnosis 5 years ago, which worked well. After a number of other treatments, she had it again about 10 months ago, but had to stop due to severe reaction to it after 2 treatments.
As for Enhertu, I think it depends a lot as to where you are located. We heard is was likely going to be very hard to get approved for NSCLC, but it only took a week for us to have the HMO approve it. I really can't tell you why we got approved so quickly, but I suspect (with no direct evidence) that it was due in part to the fact that the drug was recently fast-tracked for getting approval for lung cancers coupled with the fact that my wife is out of all other standard of care treatments. In any case, if you have not yet done so, I would strongly suggest you get in contact with Marcia Horn of the International Cancer Advocacy Network, and director of the Exon 20 Group which specializes on providing information on EGFR Exon 20 mutations and HER2 mutations. She can be contacted at: 602-618-0183 (phone) or firstname.lastname@example.org
Marcia has been a wonderful resource for us and for helping to advocate for us. She is well versed on all of the recent drugs and the clinical trials regarding Exon 20 cancers. She has definitely been a great help!
Enhertu has worked well for my wife so far - so we are hoping for the best!
Please let me know if you have any other questions - I will do the best I can to answer them!
All the best - scohn
Tue, 07/07/2020 - 13:29
Enhertu, the name is a little too on the nose which I guess makes it a little boring and definitely a little rude. But it does sound exciting in theory that it is just what she needs after pozi; even though I got lost in your description of mechanism of action. Thanks for adding that description BTW. It will be helpful for others. :) and I know where to come if I need to do some learning.
For some time, I've noticed, I become overwhelmed by your wife's ability to take what's thrown at her cancer and use it to stave off the cancer. The research and development teams are staying one step ahead of her. This may be too personal a question but do you know of others who have similar journeys as her's. It's so different from when my husband was in treatment. Unless I'm mistaken eleven years ago Tarceva was the only targeted drug used for lung cancer.
As always, thank you Scohn for keeping us in the loop. You are a big help to many readers.
In reply to Enhertu, the name is a little by JanineT Forum …
Wed, 07/08/2020 - 06:36
In these summaries I never know exactly how detailed to get since I never know who or how many people will read it. But hopefully it could be of help to anyone looking for it.
I certainly hope the research people are staying one step ahead - but I really have no idea how far we can take this. There is no question that overall things are worse than where they were a year ago. We are so grateful to have great medical teams here in Chicago, as well as contact to the great team at MD Anderson. But my wife and I are more than ever aware of how difficult it must be for people going through cancer without the access or ability to navigate the medical system.
One step at a time, but I hope you know what a blessing it is to have you and all the GRACE people around as we take those steps.