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Trying not to be discouraged....


Sabacat

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...but not doing a very good job of it.  Oncologist called today in response to my message and because he's not going to be there on Wednesday for my pre-chemo appt.  He's not so worried about the coughing blood thing now, since it happened less than once a day, and he's not committing to anything until he sees the results of my scan and MRI tomorrow evening (he'll review and speak with the NP early Wednesday morning), BUT he's thinking that maybe I'm not responding to the triplet.  I thought some of these issues (the coughing blood and swollen ankles) were maybe due to having to do the 18 days of pred and delay of chemo schedule, but he says in his experience that doesn't matter.  My scan on 9/30 showed improvement; the one on 10/19 not as much - but still no worse than the initial one on 8/31, so stable at least and better in some respects.   This was to be my 4th of the triplet on Wednesday and I was hoping that these other issues would clear up after that.  He says we have 'other options' but didn't go into detail.  I know I shouldn't start worrying until we have the scans in hand, but I'm bummed.  Sigh.  Was feeling so good just a few days ago....

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Sabacat

I cannot imagine going thru all the twists and turns of lung cancer and NOT visiting the dark side from time to time. I am also playing the waiting game and have been feeling down as well. Just don't get stuck there!

I love all my friends and really do appreciate what they have done for me these last 10 months but I will admit I quickly tire of pep talks, and that if I fight hard enough I can beat it. Not that I think I wont beat it, I think I have a reasonable chance. But sometimes I need to be allowed a bit of self pity (which my incredible wife totally understands now). She also knows not to let me get to gloomy and to give me a butt kick when required.

Best of luck to you and hang tough.

Peace

Tom

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Susan: Not to make lite of the situation but this is my story. When I went on the triplet I had a hard time with cough and constant phlegm. The phlegm was so dark that I did not now the difference between it and blood. However I began paying attention and lo and behold I saw unmistakably flakes of blood. Talk about being scared. Little by little things got better and my scan showed 50% improvement. I like to always ask my onc questions like what happened to the cough and blood. His answer was that was a good sign because the body was expelling waste due to the triplet doing the job. I hope and pray that's the case as far as you are concerned but it pays to patiently wait for the next scan. It looks like no matter what happens we are going to have bumps in the road. Wish you the best and a piece of mind always.

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Thanks, Bridget and Gary - 

Boy, I know how scary the bloody phlegm is now!  Actually, the NP scared me more than I already was.  When I spoke with the onc on the phone this afternoon, though, he didn't seem too worried about that, but he did seem to think it was likely that we were going to see little to no improvement.  Hopefully, he'll be wrong. 😊  If so, it won't be the first time (or the last).  He's an excellent doc, but not infallible.  My ankle swelling did go away after the first or second round, so it is somewhat worrisome that it's back and worse than ever.  I think that's part of what he's thinking about.   I guess we'll know for sure on Wednesday morning after meeting with the NP.  

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Thanks, Tom!  I know you’ve had some less than good news recently, too.  I do think I have a reasonable chance, too - I came into this in good health and good shape, which should count for something.  I just expected to have good results from the first line treatment - I have no druggable mutations, but PDL-1 40% which was supposed to mean a good shot at success with Keytruda.  

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Hey, Susan,

You'll never hear any perky, cheerleader-y stuff from me. 

BUT, it's pretty odd that he has this "feeling" without, apparently, anything to base it on. He says it's not coughing up blood, and he hasn't seen your latest scans, so what is this? Just thinking out loud? 

I imagine he's basing this musing on SOMETHING, but it certainly sounds less than well-informed. Try your best to hang tight till your post-scan visit. And as disappointing as it is not to have everything go perfectly, remember how many people here are doing great on Plan B or C after Plan A failed to have the hoped-for results. 

Incidentally, I've had edema in my feet/ankles off & on since I started chemo. Some days it's not there at all, some days it is. It's never been to grotesque levels, but they do get quite swollen and uncomfortable. Nobody's been worried about it--maybe they can tell from my labs that it's not a serious problem. 

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Well, the last scan, which was ON the day of 3rd round of triplet showed primary tumor larger than the scan before, which was done a week after round 2.  However, it was not larger than the one before that, which was the day before we started treatment.  So, they were considering it stable at worst.  There were a lot of other small changes - I have so many lymph nodes involved that it’s hard to track them all, especially with each radiologist using different language.  But it sounds like the Rad who read the second scan was definitely more generous than the one who read the third.  While he’s no longer worried about the blood as an emergency event, I think he’s seeing it as a sign of progression.  And my ankles have gone up and down throughout, but have never been this large before.  They’ve usually corresponded with periods of pleural or pericardial effusion. If that’s back, it would be a bad sign.  Interesting that yours has varied as well, without having had the effusion issue.

 

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Hey Susan and Teri, I wonder if compression hose would help with your swollen feet and ankles. I have a differerent swelling issue-- lymphedema in my feet and legs from having a lot of my pelvic lymph nodes removed and the rest of them damaged by radiation.  I've been wearing thigh-high compression hose for years. They're ugly and expensive (and hard to put on) but they do prevent swelling and discomfort. 

Bridget O

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I don't have any magical answers but I did want you to know that I wish you well and hope that there's nothing major going wrong at this time. 

 I do know a lot of people who had signs of pseudo progression during early treatments with immunotherapy but then as time went on their scans improved.  In some patients it seems to take longer to kick in than in others.

Best wishes

 

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3 hours ago, BridgetO said:

Hey Susan and Teri, I wonder if compression hose would help with your swollen feet and ankles.

I've tried those and didn't have much luck with them. Maybe mine just isn't severe enough to make it worthwhile.

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It's amazing what compression socks (calf high) do for my father, who has congestive heart failure. Without them he has terrible swelling but with them his legs and ankles look normal.

Take care, Susan. It's understandable to feel discouraged but let's hope there is an explanation or another plan of action. 

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Hi all - well, the scan news was not good. while we had some early response with respect to multiple lymph nodes, the primary tumor has grown.  The report with dimensions was not yet available, but it was obvious looking at the images side by side. The good news is that they are now offering a radiation option.  We are meeting with the radiation oncologist on Tuesday (yes, more driving!) but he looked at my scan and told the NP that he could get a couple of additional lymph nodes while he was at it.  It will be 10 sessions, so two weeks up there, but so far sounds pretty definite.  The NP is Chinese and we have a hard time understanding her accent sometimes, but I think she said that they would use lower radiation intensity because this would be considered palliative rather than curative, but I’ll wait to hear what the radiation oncologist has to say about that.  All in all, I’m encouraged.  I think this is faster and more definite than the other options.  

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Well, dang, I know that's disappointing. Still, you've got the right attitude, I think. A lot of these cancers, while not curable, are treatable for a LONG time. Hopefully the radiation will knock it way back. 

Have a happy Thanksgiving!

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And they are talking about restarting maintenance chemo 2 weeks after the radiation.  We did get some results with that early on with lymph nodes especially, just not the primary tumor.  If we can zap that one (and I’m hoping for killing it, not. Just knocking back) there won’t be that much left to work on.  
Also positive - NED on the brain MRI and NED on the abdomen and pelvis CT

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Hey Susan,

Sorry to hear about the news with the scan, but the radiation sounds encouraging.  Did they say what type of radiation it would be?  My Onc is hoping I can at least talk to a radiation Onc after my next and last treatment Dec 14th about SBRT .  They said it was complicated because of the location of the mass and the fact that I have already had radiation a little over a year ago.  And Lexie is right.  There are so many new options to treat this for a long time.  Please keep us updated and Happy Thanksgiving,

Babs

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Hi Susan:  I am sitting here most of the day waiting for the news. Well the bad news is that the cancer is growing but the good news you have an option. Hopefully the radiation will make it so small that Keytruda will get rid of it all together. While we get disappointed every now and then we must keep fighting especially when a fighting chance presents itself. I wish you the best always and will be following your postings closely.

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