Monday results

[Sabacat]

First of all, thank you so much to all for the well wishes!   It's been a VERY long day, so here is the short version: 

Good news - the pleural effusion (drained a month ago) has not returned.   The pericardial effusion has not gotten any better, but probably not any worse, either, so still holding off on the pericardial window surgery as long as I remain essentially asymptomatic from that. 

Mixed news - there has been a bit of progression and/OR different interpretation of new CT vs previous (different facility, different purpose, etc., so perfectly possible).  I saw a reference to something in right lower lobe that "may" be something, a reference to a nodule in the left chest wall that I hadn't heard of before, and "persistent occlusion of subsegmental bronchi right upper lobe" that was news to me.   OTOH, there was no comment on the potential thyroid or adrenal nodule, which I'm taking as a good thing.  

Molecular studies were back - no currently useful mutations.  I do have KRAS, but it's G12V.  However my oncologist says that having TP53 along with that makes it more likely that I will respond to immunotherapy (in addition to the PDL-1 40% result).   We briefly considered a clinical trial that he is running with Opdivo, Yervoy and Taxol.  It has been very encouraging, but in part due to the travel issue (would have to make the trip 2 weeks out of three) and the likelihood that the standard triplet will be effective, we decided to pass.   Spending the night tonight so that we can start tomorrow - Carboplatin/Pemetrexed/Keytruda - so happy to finally be doing SOMETHING.   Second round 9/21 and third round/first scan will be October 12.   Praying for a quick and substantial response! 

Susan 

[LexieCat]

Overall, sounds like a good report! I have my appointment with my oncologist tomorrow, and I suspect I'll be scheduled to have my port installed, even though I still have to meet with Radiation Oncologist #2 on Friday.

I agree--it will be good to finally be DOING something!

Glad to hear it went well!

[GaryG]

Good news indeed.  Glad to see a plan in place. As for the nodes they seem to be a normal occurrence after each scan. I am currently on the triplet and my oncologist was very happy with the results after just 2 treatments. Unlike you I am PD-L1 0. Let's get the show on the road and hope for great results on October 12.

[Sabacat]

Gary, that's great, but how did you know about results after only 2 weeks?  

[Sabacat]

Lexie, sorry to have jumped the gun on you. 😁  Sounds like you won't be far behind, though.  I am holding off on the port for now - I may regret that, but we'll soon see...

[Babs]

Hi Susan,

Glad you have a plan and start tomorrow.  Looks like you and I will be about 10 days apart.  I am on Carbo/Taxol/Keytruda.  I have #2 9-11, #3 on 10-2 and a scan shortly after.  It’s not scheduled yet.  How long is your treatment tomorrow?  Let us know if you experience any side effects.  Good luck tomorrow!  

Babs
 

 

[GaryG]

13 hours ago, Sabacat said:

Gary, that's great, but how did you know about results after only 2 weeks?  

Sorry I meant to say 2 treatments and that makes it 6 weeks.

[Sabacat]

Thanks, Babs!  The appt says 4 hours, but the sheet from the oncologist says 2 hours, including premeds.  Will LYK what it turns out to be.  Interesting combo - I wonder what drives the choice between Pemetrexed vs Taxol.  How were your side effects from the first?  I think I remember that you posted, but I only have my phone with me so hard to look up. 
Susan

[Rower Michelle]

Hi Susan,

Glad to hear you’ve got a plan ready to roll. That’s reassuring.  You might want to reconsider the port.  I faced the same dilemma, until the nurse practitioner told me two things 1) the chemo is more effective when inserted into the port because it’s a direct hit to the cancer as opposed to circulating through the body 2) vein collapses are pretty common with chemo.  
 

Do drink plenty of water and try to do some type of body movement every day to keep your circulation going.   Good luck!  We’ll all be here for ya! Michelle

[Babs]

10 hours ago, Sabacat said:

Thanks, Babs!  The appt says 4 hours, but the sheet from the oncologist says 2 hours, including premeds.  Will LYK what it turns out to be.  Interesting combo - I wonder what drives the choice between Pemetrexed vs Taxol.  How were your side effects from the first?  I think I remember that you posted, but I only have my phone with me so hard to look up. 
Susan

I was wondering the same thing about Pemetrexed vs Taxol.  My first go round with Carbo/Taxol was a year ago and my side effects were mainly loss of appetite and muscle and joint pain.  No nausea.  This time with the doubled up dose of Carbo/Taxol and the addition of Keytruda was an increase of appetite, no muscle joint aches but bad lower bone pain in my lower extremities.  My legs, even my toes hurt!  No nausea again.  Also some diarrhea. 😳  How are you feeling so far?  Keep me posted.  
 

Babs

[Sabacat]

Thanks, Michelle! Interesting perspective on the port. I will definitely ask my onc about the effectiveness issue.  
 

Definitely on the water consumption!  I think I’m up to about 100 oz today so far. My Dad’s kidneys were damaged from his chemo back in the 80s, and he ended up with ESRD and on dialysis, so I’m very motivated.  Fully intend to keep up my daily 2-miles up and down the mountain as well. We are on top at 3100 feet, and my route is 7 laps that go down and back up a 50-foot elevation change each time.  I’ve had to go slightly slower due to the pericardial effusion in order to keep my heart rate to a max of 140ish, and may have to ease up a little more if side effects require, but won’t reduce distance unless absolutely forced to.  REALLY hoping to see some reduction in the PE quickly.
 

Susan

 

[Sabacat]

3 hours ago, Babs said:

I was wondering the same thing about Pemetrexed vs Taxol.  My first go round with Carbo/Taxol was a year ago and my side effects were mainly loss of appetite and muscle and joint pain.  No nausea.  This time with the doubled up dose of Carbo/Taxol and the addition of Keytruda was an increase of appetite, no muscle joint aches but bad lower bone pain in my lower extremities.  My legs, even my toes hurt!  No nausea again.  Also some diarrhea. 😳  How are you feeling so far?  Keep me posted.  
 

Babs

Definitely no appetite issues so far, but I’m attributing that to the steroids given pre- today (and there are two days of Dex after that). They say I won’t see the brunt of it till probably 4:days.  Will keep you posted.

[Babs]

Susan,
 

How are you feeling so far?  Any side effects?  Thinking of you....

Babs

[Sabacat]

Thanks, Babs!  Doing pretty well.  Today is the first day without the steroids and there's definitely an energy drop.  I had what I would normally think was a flare of my GERD/Barrett's in the early morning hours but, based on Tom's advice in the past, decided to take the first anti-nausea pill in case it was the start of that.  Whatever the underlying cause, I felt better when I got up 2 hours later.   I'm still 3 pounds up from pre-chemo, so seem to be retaining all the extra fluids I consumed.  

My blood pressure has been rising incrementally each morning since chemo, but drops in a couple of hours; not sure what that's about, but with the pericardial effusion, heart rate and BP are omnipresent concerns and tend to be a bit wonky.   I did my 2 miles a little bit ago, although at a slower pace than normal, but at least got it done. 

 

[Babs]

Wow, sounds like you’re  doing great!  I’m going to talk to my Onc at my next treatment about the steroids.  I don’t take any with the exception of the ones they give me during treatment.  I wonder if that makes a big difference. She offered the last time I was on chemo but declined as I’m not sure the side effects of coming off the steroids are any better than the side effects of the chemo/immunotherapy.  I did have some serious heartburn for about a week that I don’t normally have.  I hope you continue to feel good!
 

Babs

 

[Sabacat]

This is their standard protocol for my triplet - they give it with pre-meds, then I take (2) 4 mg dexamethasone tabs on the next two mornings.   I like it because it seems to assure that I’ll feel ok on the long trip home and the next day.  I don’t notice any side effects from the steroids aside from extra energy short term and the plus that my bad shoulder feels better for a couple of days 😊 Too bad the effect doesn’t last!  

[Sabacat]

Well, I seem to have hit the wall today.  Started with GI issues (no vomiting, thankfully), migraine aura (relatively common for me) and significant soreness at base of skull.  Later on was able to get outside and get my two mile walk in (slowly), but still feeling weak and having cough and SOB.  Hoping tomorrow will be better! 

 

[GaryG]

Sorry you are not feeling good. If this is any consolation I am 10 days past the 3rd triplet infusion and the side effects are a lot less severe than I experienced after the first infusion. Even after the second infusion the side effects were manageable. Hang in there there is hope.

[Sabacat]

Thanks, Gary! That does help.  I did so well the first theee days that this really threw me.  Suspect it may be in part because there wasn’t time to start the B12 and folic acid the week before treatment - just got it that day. 

[Babs]

Sorry you’re not feeling well.  My lower extremity pain is gone.  My hair is starting to come out in small globs.  I feel like I got hit in the top of my head with a baseball bat!  Yesterday I had a mishap with our daughters black lab and fell hurting my wrist.  It’s very swollen and sore.  Pretty sure it’s just spraIned and not broken.  I can move it. The dog was on her leash and that and my feet got tangled and I went down using my hand to break my fall.  If not better tomorrow I should probably get it an X-ray.

How are you feeling today?  

Babs

[Sabacat]

Oh no on the dog!  Nausea was awful and Andy annoyed I didn’t take the drug, but it is compazine which is antipsychotic and makes my eyes weird so hard to read and type.  Was so sure I wouldn’t have this part ☹️

[Babs]

Good morning,

 

Hope you’re starting to feel better.  Maybe the Dr can give you a different med for the nausea.?  I have both Onadesteron and Olanzapine.  I take the latter as it also helps me sleep.  

[Lisa Haines]

Hi Susan,

  Just wanted to say hello send your well wishes and also let you know the I too have KRAS 12v (which a you know isn't a mutation that can be treated with a targeted therapy.  Knowing from day one that there was not a treatment specific for my mutation, I never focused on it any longer and went with traditional therapies which worked well.   My best and most amazing treament was Immunotherapy (Opdivo aka Nivolumab) which was my second line treatment after chemo (Carbo and Alimta), which I did quite well in initially with little side effects.    I did later have progression and by that time (Fall of 2015) Nivo had just been FDA approved as a second line treament that could be used regardless of PDL1 status (something that was not tested for at the time I was diagnosed in early 2015).  It's been a life saver for me and even though I was only on it for 9 months (had to stop due to recurrent pneumonitis), I worked very well and I was stable within the first few months.   It's now been OFF it for over 4 years and I'm still stable and doing well with no other treatment.  

   I wish you the very best and hope you'll do well with your treatment and be feeling better soon.

    Lisa

PS:  Zofran (sublingual) was the nausea med that worked best for me.  I had no luck with Compazine and once had to go in for IV Fluids because I was dehydrated, that day they also gave me IV Zofran and it worked great and it was my go to for Nausea ever since.    Oh and I LOVE my Port and can't imagine going through cancer without one.  I've had mine in for 5 1/2 years and it's wonderful.  Even now, off treament, I have not wanted it removed.  We still use it for all my lab draws, for the contrast for CT scans and this weeks, they'll use it for IV's and meds I need while in the hospital for hip replacement surgery.   I always highly recommend a port !  

[Lin wilki]

So Lisa.  Your insurance problems must be resolved since Hurrah! your having your hip replacement 

Good luck and hope you’re back on your feet and back in Zoom very soon

[Sabacat]

Sorry for delayed replies, everyone, and thanks so much for all the well wishes.  Unfortunately, it turned out to the the weekend from hell.  I was given Compazine for a nausea drug, which I had never taken before (well, I am not psychotic and have never had chemo before so not too surprising) but the side effects were horrendous.  I  became an idiot in just a few hours -- had trouble even finding alphabet letters on my phone to text a message, and was unable to follow a simple list accurately to set up my husband's pills in their morning, noon, night containers, which I have done for years!  In addition, my BP dropped so low the machine wouldn't measure it and my heart rate went up to 100+ per minute at rest.  I was a total basket case.  Even today, BP is back somewhat but heart rate still high and  trying to reach the doc.  I will NEVER take that stuff again - I'd rather barf my guts out!!!