Update on the saga of me and my adrenal glands

[Sandy N]

Found out that the little blips on my adrenal glands are adenocarcinoma (same little stinker that was in my right lung).  My lungs are FINE, though, so that's something to be happy about.  No genetic stuff found in blood tests with the exception that there was an RET on the RNA (whatever that means).  My doc is going to look further into that.  However, in the meantime I've started back on treatment.  A larger dose of carboplatin, Alimta and Mvasi.  I had my first treatment this last Friday and only have 3 more treatments to go (these will be done every 3 weeks).  If things are looking OK at the end of the 4 weeks, the carboplatin will go out the door and I'll remain on maintenance for the time being.  Since I have "graduated" to stage IV with this (originally diagosed stage IIIA a year ago), I don't know what the maintenance usually consists of.  But I do know that the goal is to contain and manage this.  Hopefully render things nonreactive (what does that mean?).  Regardless, I've been assured that this met is extremely common so it's not like my onc slapped himself upside the head and said "Dang I didn't see that coming!!!"  LOL!  It's his hope that this is the only met, as it is mine of course.  Anyway, not gonna give up, gonna fight the fight and keep up the attitude! 

I'd sure like to hear from someone who has had an adrenal gland met, if you're out there.  Heck, I'd like to hear from anyone on this forum!  You're all awesome!  

[LUNGevityKristin]

I'm sorry to hear about the adrenal glands.  If you have a RET mutation there are Targeted Therapies that might work for you.  Here is more information: https://lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/targeted-therapy

[Sandy N]

Thanks, Kristin!  Mvasi is something of a targeted therapy in that it starves tumors by cutting off their blood supply.  BUT a person has to keep an eye on blood pressure (but give me that instead of a tumor any day - LOL!).  I don't know that the RET was much to even make a difference.  My onc is going to bring this up at what he calls their "tumor board" at their next meeting.  He said it's a long shot but it could give him another weapon (med) to treat me with.  I don't think Mvasi is meant for long-term use since you basically have to have a tumor - LOL!  

[GaryG]

Sandy: Not to contradict what you wrote but we are here to learn and exchange ideas for the good of all. Mvasi is very similar to Avastin which is both chemotherapy and targeted therapy that stops the tumors blood vessels from forming. Even though your oncologist knows best,  you might still ask him about once-daily oral RET-targeted therapy like Pralsetinib. There are some on clinical trial you might benefit from.

[Sandy N]

On 1/19/2021 at 2:16 PM, GaryG said:

Sandy: Not to contradict what you wrote but we are here to learn and exchange ideas for the good of all. Mvasi is very similar to Avastin which is both chemotherapy and targeted therapy that stops the tumors blood vessels from forming. Even though your oncologist knows best,  you might still ask him about once-daily oral RET-targeted therapy like Pralsetinib. There are some on clinical trial you might benefit from.

Thanks, Gary!  And input is ALWAYS welcome!  I will definitely follow your advice on this.  

[LouT]

Sandy,

I'll keep following you here, but my prayers are with you for success.

Lou

[Sandy N]

Had a telemed with my oncologist this last Friday (2nd treatment...only 2 more to go!  Halfway there!).  No mutations.

 

[Sandy N]

Just had my first treatment today.  Feeling good so far but I know from experience that side effects are just a day or two away.  I did find out some very heartening news today.  At my last meeting with my onc to go over the scan, he had very casually mentioned a mass that was shrinking in my chest but then that was it.  I did ask about it today as I was concerned that perhaps I not only had a met but a recurrence as well.  Found out that the mass is indeed shrinking.....the burn pile mass.  LOL!  That's why I've had a bit of a cough, slight rasp to my voice, clearing throat an a bit of a wheeze.  The lymph node that was enlarged 3 months ago has shrunk, too!  So, whew, what a relief!  So now the only fish to fry are my screamin' adrenals!    Feeling a lot happier and chipper, I tell ya!

Edited to add:  For anyone who is new here and doesn't know what the "burn pile" is that we refer to, it's the mass of charred tissue (LOL!) left behind by radiation.  It does start to shrink over time and causes surrounding lung tissue to contract and tighten and there are some side effects associated with it.  But easily doable!

[Jesse L.]

Just checking in to compare notes...on 4/5 I had my first chemotherapy (Carboplatin/Alimta) and the last few days have been kind of rough. I so hate nausea followed very closely by constipation. And it seems to hit me just as I go to bed at night. I have such horrible vivid memories of constipation when I was in the hospital after the removal of my RLL back on 2/25 after which they were feeding 20 mg. Oxycodon daily. I sure don't want that again. So it's Zofran, stool softeners, Mira Lax, and on and on. 

In any case, good to hear that your mets are minimal and you are chasing the last of those nasty malcontents down. Keep up the fight and I'll support you as best I can!!

[Sandy N]

14 hours ago, Jesse L. said:

Just checking in to compare notes...on 4/5 I had my first chemotherapy (Carboplatin/Alimta) and the last few days have been kind of rough. I so hate nausea followed very closely by constipation. And it seems to hit me just as I go to bed at night. I have such horrible vivid memories of constipation when I was in the hospital after the removal of my RLL back on 2/25 after which they were feeding 20 mg. Oxycodon daily. I sure don't want that again. So it's Zofran, stool softeners, Mira Lax, and on and on. 

In any case, good to hear that your mets are minimal and you are chasing the last of those nasty malcontents down. Keep up the fight and I'll support you as best I can!!

My last treatment regiment prior to this one was carbo, alimta and mvasi.  So I totally get what you are going through.  I had a tinge of nausea but really fought taking any of the anti-nausea pills they prescribed to me as they caused constipation.  I've probably only taken 2-3 of those things since I was first diagnosed and started treatments in Fall 2019.  So far the anti-nausea drugs they shoot me up with prior to my treatments are doing the trick.  I found that the nausea related to constipation was just awful.  I have used Milk of Magnesia and that really helped.  If you can, get the cherry flavored stuff.  The plain stuff seems to have a slightly fishy undertaste and you'll need some sort of beverage chaser immediately afterwards.    The side effects such as fatigue, etc.  seem to wait for a day or two after the infusions.  You'll probably get some taste changes, too.  I didn't get the metallic taste from carbo/alimta so that was good  But some foods would leave what I would call a sludgy, oily miasma in my mouth.  I found that acidic foods are tolerable for me.  Kind of cleans my mouth out.  Hair loss should be mild.  I did get some thrush once but got some meds for that.  No mouth sores, no rashes except extremely dry palms.  Lotion helps with that.  If you have any other questions or just want to keep me up to date on your side effects and how your treatments are going, I'm only a post away and will be happy to share my experiences with you (and hopefully we'll both have good news to share).  Right now I'm on Taxotere and Cyramza.  Taxotere is a little harsher than carbo but the side effects sound pretty similar to what I was on.  Except I'll probably lose the rest of my hair but that's OK.  It does grow back.

Thanks for your well wishes on my treatments.  Hopefully the third time will be the charm.    I wish you the best, too, and you have my 100% support!