Scan results

[Sandy N]

Well, scan results weren't exactly what I hoped for.  Sounds like the lymph node in my chest reduced in size (which is a good thing) but a couple of the blips on my adrenal glands increased slightly in size.    I was also told I have a TP53 mutation which is common in about 50% of cancers.  However, to date there isn't a targeted therapy for it.  I start a new regimen of treatment on Friday, April 9.  I'm to start taking 9mg of prednisone each day (beginning today) just to make sure those tumors are not causing decreased function in my adrenal glands.  I hope I don't grow a beard or anything from that.  LOL!  The two drugs I'll be infused with are ramucirumab and docetaxel.  I read about both of them and it sounds like it's the go-to cocktail as the next step up.  Similar side effects to the triplet I just completed.  So where we're at right now is the "treat, control, contain" stage.

The TP53 aspect of this means I have more of a battle than I had anticipated.  Sidenote on that: this mutation was discovered in the blood test that I had in December.  But this was complete news to me today.  My onc really IS a good doctor and I have complete trust in him.  But I was told that I had no mutations.  But perhaps he meant targetable mutations.   Regardless, at least I know now.  While I'm not impressed with having yet another round of treatments (again, 4 treatments 3 weeks apart so that's not oppressive), I'm not giving up.

On another note, I do have an extra week break to get some much-needed dental work done.  Next week was the "window of time" that the cancer center gave me to get stuff like that done.  I saw my dentist this morning prior to my onc appointment so anything that would me medically as far as dental goes will be taken care of Monday, April 5th.  Gosh it's nice to be able to deal with something normal for once! 

Anyone else have the TP53 mutation and/or could shed a little more light on it for me?  I've done a little reading but perhaps I need to revisit it when my mind has quit spinning a bit.      

    

    

[Tom Galli]

Sandy,

Very sorry to learn of your progression. I just finished reading about TP53 and I'm confused. Do you have adenocarcinoma and what were the drugs used during your triplet?

Have you consulted with a radiation oncologist. A lot of radiation oncologists are using "precision" radiation (SBRT, IGRT, IMRT, Proton and etc) to treat multifocal (many locations) small tumors. You might benefit from this type of treatment.

Stay the course.

Tom

[Sandy N]

2 minutes ago, Tom Galli said:

Sandy,

Very sorry to learn of your progression. I just finished reading about TP53 and I'm confused. Do you have adenocarcinoma and what were the drugs used during your triplet?

Have you consulted with a radiation oncologist. A lot of radiation oncologists are using "precision" radiation (SBRT, IGRT, IMRT, Proton and etc) to treat multifocal (many locations) small tumors. You might benefit from this type of treatment.

Stay the course.

Tom

Hi, Tom!  TP53 is a confusing little imp and I'm going to have to revisit reading it.  I was scanning through things when I got home from my appointment trying to get some sort of semblance of understanding.  Yes, I have adenocarcinoma.  The triplet I was on was carboplatin (a heavy hitter dose of that), Alimta and Mvasi.  

I just looked up radiation therapy as you suggested.  Turns out there is what's called SBRT radiation that is used on lung cancer (and other forms of cancer) mets.  Mentioned the adrenal glands.  Very targeted with minimal damage to surrounding tissue.  I don't know why this wasn't presented as an additional treatment to me but I'm going to ask.  I did have 6 weeks of radiation to my right lung after my initial diagnosis.  Can a person have radiation again if it's in a different area of the body?

Thanks for your response to my post.  Right now I have to admit that my head is spinning and I've actually cried!     

[Judy M2]

Sandy, sorry to hear about this complication. I also had to get dental work done before I started chemo in 2019. Boy was that rough. Hope you don't have too much pain from it. Also hope you get answers re your TP53 mutation and radiation questions. I would definitely consult with a radiation oncologist. Good luck. 

[Sandy N]

13 minutes ago, Judy M2 said:

Sandy, sorry to hear about this complication. I also had to get dental work done before I started chemo in 2019. Boy was that rough. Hope you don't have too much pain from it. Also hope you get answers re your TP53 mutation and radiation questions. I would definitely consult with a radiation oncologist. Good luck. 

Thanks Judy!  I am definitely going to ask about radiation at my first treatment next week.  In fact, I'm going to put a call in and request that the Director/CNP there put me on her schedule for that day.  I want to take advantage of any and all options available to me.  Also read that if it came right down to it, adrenal glands can be removed surgically and I'd have to do hormone replacement therapy.  Hey I might just get that beard yet!  LOL!  I'm feeling a little better now that I've done a little reading on targeted radiation.  And other "maybe down the road" options.  I'm still puzzled as to why my onc wouldn't have brought this up unless he wants to see how the next treatment works for me (or maybe SBRT isn't an option but I can't see why it wouldn't be).  

[LexieCat]

I have TP53, too--my oncologist just kinda shrugs and says it's a common mutation in many, many cancers. There's no targetable treatment and right now doesn't seem to be a focus of research. I'm not sure every single thing they find is necessarily that important. After all, we know SOMETHING is making these cells act up, and if it's not one with a targetable mutation it's probably something else. 

I'm not sure they can measure/assess how much impact this mutation has on a specific person's cancer.

[Sandy N]

Just now, LexieCat said:

I have TP53, too--my oncologist just kinda shrugs and says it's a common mutation in many, many cancers. There's no targetable treatment and right now doesn't seem to be a focus of research. I'm not sure every little thing they find is necessarily that important. After all, we know SOMETHING is making these cells act up, and if it's not one with a targetable mutation it's probably something else. 

I'm not sure they can measure/assess how much impact this mutation has on a specific person's cancer.

I KNEW you were my lung cancer twin!  To your knowledge, is radiation an option for those of us with TP53?   

As always, thanks for your input.  Much appreciated!  With each post on here, my spirits have lifted.  I can't thank the Lungevity crew enough!

[LexieCat]

My Guardant report says, "Mutations in TP53 may increase resistance to ionizing radiation therapy." Whether that is significant or not, I have no idea.

I don't know a thing about adrenal mets--hopefully those get knocked out with the drugs and/or radiation.

 

[Sandy N]

14 minutes ago, LexieCat said:

My Guardant report says, "Mutations in TP53 may increase resistance to ionizing radiation therapy." Whether that is significant or not, I have no idea.

I don't know a thing about adrenal mets--hopefully those get knocked out with the drugs and/or radiation.

 

OK, that explains why he didn't suggest radiation.  I'll still ask about it but perhaps the drugs will work.  Thanks again!

[LexieCat]

It's very difficult to understand the articles about TP53. For one thing, there are germ-line (inherited) mutations that can increase the risk of cancer over one's lifetime, as well as acquired mutations (what we are generally talking about here). There are different types of mutations of this gene, and it stands to reason that it would manifest differently in different types of cancer. 

I'm not sure oncologists are yet making treatment decisions based on finding these TP53 mutations. I also have no idea whether the percentage expressed is significant and, if so, to what degree. My report says TP53 is 4.1%. 

[Sandy N]

6 minutes ago, LexieCat said:

It's very difficult to understand the articles about TP53. For one thing, there are germ-line (inherited) mutations that can increase the risk of cancer over one's lifetime, as well as acquired mutations (what we are generally talking about here). There are different types of mutations of this gene, and it stands to reason that it would manifest differently in different types of cancer. 

I'm not sure oncologists are yet making treatment decisions based on finding these TP53 mutations. I also have no idea whether the percentage expressed is significant and, if so, to what degree. My report says TP53 is 4.1%. 

Thanks!  I did hear back from the cancer center and I'll be having "chemo ed" at my first treatment with Jess (CNP/Director and all-round awesome lady!) about the two drugs I'll be getting.  I have a short list of questions for her.  Well, the way I look at it is at least there is a Plan B, Plan C, etc.  I'm not being written off.   

 

[Jesse L.]

So sorry to hear of your setbacks... I would think in your seemingly stubborn case, nothing would be off the table. While I may be somewhat new to this I have never read, heard, or even mistakenly come across any cancerous anything that was "resistant" to radiology. A radiological burn is just that; a burn that leaves nothing alive and only scar tissue in its wake. And they're doing wonderful things with extremely pinpoint radiation therapies nowadays. If it comes down to it in my future, I would not hesitate in getting radiation therapy. OK, so there's some side effects but in all certainly seems to be less than those side effects derived from almost all chemotherapy treatments...

So sorry if I seem to make sense, but I'd be asking some questions...😒😒😒  

[LexieCat]

There are definitely situations where radiation isn't appropriate. It isn't harmless, and it can be administered only when the likelihood of doing some good exceeds the risk of causing additional harm. I don't know all the ins and outs of it, but I do know, for example, that with larger tumors, the amount of radiation needed to kill it would do excessive harm to other tissues. 

It never hurts to ask about any/all therapies that might help, but radiation isn't a cure-all.

ETA: Here's a short article about radiation resistance: https://www.hopkinsmedicine.org/news/articles/detecting-tumors-resistance-to-radiation-therapy.

[Jesse L.]

OK, LexieCat I read the article and I stand corrected...who knew that there were radiation resistant diseases...this bears further investigation. A learning curve for sure!

[Sandy N]

48 minutes ago, Jesse L. said:

OK, LexieCat I read the article and I stand corrected...who knew that there were radiation resistant diseases...this bears further investigation. A learning curve for sure!

I read it, too.  I'll still ask about it but I have a feeling that I'm probably not a candidate for it.  Ah well, drugs it is!  LOL!

[LouT]

Sandy,

Well, from now on, I need to read the unread messages top to bottom so I don't reply to something that is now all but passed.  So sorry to hear about your results.  I hope you are able to follow up with your treatment team on some of the suggestions made so they can help you to decide if your are getting the best approach possible.

Lou