Pulmonary emboli

[DMaddox]

Hi y'all.  I have lurked but hadn't posted yet.  All your information has been so helpful to me already.  A little back story - in April, I was working in my garden, lifted a bag of mulch and my right arm snapped in two.  ER doc said broken right humerus and put me in a sling.  Saw the ortho doc who said there was more to the story.  The entire cortex off the back of the bone was gone.  He said this was a pathologic fracture, probably cancer.  I had no insurance (stupid U.S.A.) so a GoFundMe was set up by my kids to get me into a doctor to find out what was going on.  Long story short and lots and lots of tests you all have had too, it was stage IV lung mets to bone (1.2 cm nodule in left lobe).  Cancer center got me set up with ACA with GoFundMe funds funding my portion.  Got a rod in my arm 7 weeks after breaking it, did radiation to the arm, and started chemo (Keytruda/Alimta/carbo) in June.  All has been going relatively well.  Doc said 4 treatments of the 3-drug therapy then re-PET scan to see where we are and 2 more years of maintenance therapy with Keytruda/Alimta.  (Genetic testing was done on my biopsies and I had no identifiable markers).  I just finished treatment #4 and was having my usual horrible lower intestinal problems with the side effects but also thought I might have a UTI.  Stopped in to the local urgent care to see if indeed I had a UTI, and doc decided I had an acute abdomen and did a CT scan w/ and w/out.  Technician came in and said radiologist saw something in my lower lung he didn't like and they would be doing a CT scan w/ and w/out of my chest too.  Turns out - 3 pulmonary emboli, two in each base and one in the right upper.  I had no "symptoms" per se.  I mean, doesn't lung cancer cause one to be short of breath sometimes?  I was, unfortunately, a long-term smoker so perhaps I don't notice shortness of breath like others might and I work a very sedentary job.  My question for you is this - I'm told cancer and chemo both can cause PEs.  Have any of you dealt with that?  They wanted to admit me to the hospital, which I flatly refused.  I mean, I came in there for a UTI, which I did indeed have.  They gave me Lovenox.  I got Lovenox the next day at the cancer center and now I'm on Xarelto.  I forgot to ask the doc, since I will be doing maintenance chemo for 2 years, if I will have to stay on this thromboembolic most likely the entire time.  I'm guessing I will.  Have any of you experienced this?  I will say this, the one thing that did not show up on the chest CT w/ and w/out of the chest was the 1.2 cm cancer nodule that started this entire thing in motion.  My oncologist noticed that too.  My PET CT is scheduled for 9/7/21 so I'll know next Tuesday if it still lights up or not and if the cancer is gone in my right arm.  They are telling me not to worry about the PEs and that they are common in cancer patients.  Take my medicine and seek attention immediately for severe shortness of breath.  Just wondering if others have dealt with the same kind of thing.

[LexieCat]

Hi, D, and welcome out of lurkdom. I don't have any experience with pulmonary emboli. It's great that your nodule is gone--hopefully any other spots, like your arm, are gone, too.

Just a heads-up--hopefully this will not happen to you, but I had a terrific response on the triplet, but my cancer started to progress while on the maintenance. Just keep in mind, there are TONS of clinical trials for folks who have progression after first line chemo/immunotherapy. I just did one and so far, it's working great (next scans next week). Many of those expenses are covered by the study's sponsor.

Also, have you applied for Social Security Disability (SSDI)? Stage IV lung cancer patients automatically qualify for benefits, and after two years you would be eligible for Medicare. Even though Stage IV cancer is treatable, lots of us have to undergo treatment for quite a while. So it's worthwhile to plan for that possibility.

Let us know how your PET CT turns out. I go for my next CT scans the same day, so I'll be rooting for you, too.

[DMaddox]

I have not applied for SSDI yet.  I've worked every single day, even the day I broke my arm and all through the rest of this mess.  Unfortunately, my husband (well ex-husband now - of 35 years - so he could obtain insurance through the state to get a life-saving operation done because we are both self-employed and could not afford insurance on the marketplace) has been dealing with a degenerative back issue, hasn't worked in three years, and has applied for disability (denied twice but we have an attorney) so I'm the only source of income.  I have to work and disability won't come even close to my present income.  Thankfully, I work from home and have 24 hours to turnaround my work so I somehow make that happen no matter how punky I may feel.  I can tell you, it was definitely interesting trying to type medical records (I am a medical transcriptionist) for 7 weeks with a broken arm    Can one earn money while on SSDI?  I truly have no idea.

[Rower Michelle]

Hello and welcome,

Thanks for joining our group.  A few of the members in my LC support group have had PEs shortly after diagnosis, they were all hospitalized for at least a week to receive IV blood thinners and were discharged following a confirmation via CT scan the clots were responding before going onto Xarelto.  Unfortunately this is a common situation.   It is serious condition but treatable condition that requires long term medication.  

With a stage IV diagnosis, SSDI will be approved, there is a six month waiting period before payments can be received and two years before Medicare eligibility.  It’s possible to work and earn a small amount of money each month.  The best source of information is contacting the Social Security Administration directly as the internet is loaded with misinformation.  
 

You’ve been through a lot this summer- I hope your scans go well for you.  Keep us posted. 
 

Michelle

[Tom Galli]

Welcome here.

Lexie and Michele have provided excellent advice. On Social Security Disability, you might want to read this if you intend to apply. Note that Stage IV decisions are typically rapid and approved.

Glad to have you out of the shadows.

Stay the course.

Tom

[LexieCat]

Yeah, I think it took a week or two for my approval. I just had to get them all the medical records, but it was pretty simple. 

[DMaddox]

2 hours ago, LexieCat said:

Just a heads-up--hopefully this will not happen to you, but I had a terrific response on the triplet, but my cancer started to progress while on the maintenance. Just keep in mind, there are TONS of clinical trials for folks who have progression after first line chemo/immunotherapy. I just did one and so far, it's working great (next scans next week). Many of those expenses are covered by the study's sponsor.

Quick ?, Lexie, how quickly did they notice your cancer progression on the maintenance?  Do they set up routine scans once you move to that type of therapy?  Also, I assume your doctors stay up on all these clinical trials available or was this something you sought out on your own and went for?  I hadn't thought that far ahead in the process yet.  I know you said your scan is next week too - I'll be praying you find the trial has worked marvelously.

[LexieCat]

The first scan (I think about two months after starting maintenance) was equivocal. The radiologist thought it showed progression; my oncologist wasn't convinced and wanted me to continue on maintenance (my then-oncologist is a highly regarded expert--I trust his judgment). The next scan, about two months later, left no doubt--the cancer was definitely progressing. At that point, my doctor suggested two clinical trials they were doing at Penn (where I get my oncology treatment). I started the paperwork for one of those, but then I read about a trial here on the forums that sounded super interesting. It's called TIL therapy (stands for tumor-infiltrating lymphocytes). First they take a sample of tumor tissue (my surgeon could not access the main tumor so the sample was taken from my "hot" lymph nodes) and send it off to a lab. There, they extract the lymphocytes that have already invaded the tumor (so they already recognize the tumor as a bad guy to kill) and multiply them till they are in the billions. That takes about three weeks. Then I was admitted to the hospital and given a 5-day course of intense chemo (to deplete my lymphocytes to make room for the new ones), followed by an infusion of the new and improved lymphocytes, followed by several doses of IL-2, a biologic that revs up the immune system. All told, I was in the hospital for three weeks. This trial was at the hospital where I had my lobectomy four years ago, before the recurrence that made me Stage IV.

The doctor told me not to expect too much from the first scan, but mine was terrific--the tumor shrank dramatically. The best thing about this treatment is that if it works, that's it--no more cancer treatments. That's the main reason I chose this trial over the others--which involved ongoing treatment with new drugs.

There are several ways to find clinical trials. Your oncologist might know of some. Lungevity provides a matching service. And Go2 Foundation can also help find suitable trials. Or you can do your own searches at clinicaltrials.gov. I read about my trial here on the forums, and it happened to be local (happily for me). Some of these trials have sites all over the country. Others are smaller and at fewer locations. Some trial sponsors will provide help with travel and lodging if it's far away.

So you're a ways off from having to look into that (although there are also trials for newly diagnosed who have not been treated), but it's good to have in the back of your mind the fact that there are options--often, many of them. My oncologist said there were literally hundreds of trials that i might qualify for, having progressed after first-line therapy. Incidentally, I have plain-vanilla adenocarcinoma with no targetable mutations.

[DMaddox]

Wow, Lexie, such incredible information.  I am blown away by the things medical science can do in these days.  How exciting!  Thank you for taking your time to explain all of what you have been through.  It sure does a newly-diagnosed person a lot of good to read there are so many options available for treatment these days.  My oncologist said, right after saying you have stage IV lung cancer, is "This is not a death sentence."  He said 15 years ago, he would have told someone in my shoes to start getting their affairs together but not anymore (not that that should be overlooked and/or set aside by any means) but just the fact that there are options.  I don't even know my TNM, I'm embarrassed to say.  I have vanilla NSCLC with no identifiable mutations as well.  I'll be thinking of you next Tuesday when we both get our scans  Here's hoping we both get good news!

[Rower Michelle]

Just to give some perspective as to how fast the research is moving…. Three years ago I was told upon learning my stage IV diagnosis to get my affairs in order…quickly.     New biomarker methods identified a mutation the “old” testing missed.   So hold onto hope there’s a new horizon for lung cancer survivors.   

[DMaddox]

LexieCat - The results of my scan were very positive.  The lung nodule has decreased from 1.2 cm to 4 mm.  The adenopathy in the lymph nodes has "mostly cleared."  The uptake in my right humerus (the pathological fracture spot) went from 15.7 to 3.4.  No cancer seen anywhere else.  I'm happy with these results after only 4 treatments with the triple drug therapy.  I'll find out next Monday what they plan to do next.  I'm hoping for 5 more radiation treatments to my arm to hopefully lick that spot and I'll just have to wait and see what they say about going to maintenance versus continuing triple drug therapy.  I'd almost like to do the triple a couple more times before moving to maintenance.  Hopefully since there has been this much improvement already, they won't want to change the regimen.  I can't see any reason they would specifically want to at this point but, as we know, I'm just guessing in the wind.  I hope your scan had great results too!

[LexieCat]

Wow--great news!! The thing is, there are pretty strict protocols about how long they can give carboplatin. There might not be an option to give it longer than four cycles. The 3.4 uptake doesn't necessarily mean there is active cancer, I don't think. 

You're doing great--keep us posted on the next steps. And don't worry about going on maintenance too soon. For a lot of people the maintenance eliminates remaining cancer. 

I just got an email that I have new test results in my portal. I'm assuming that might be my scan (though it could also be lab results from blood draw yesterday). But my appointment with the doc is in 45 minutes and I'd rather wait and have him interpret the scan and report. If I'd looked at the last one, myself, I wouldn't have grasped the significance. Better not to let my imagination run away with me!

[Tom Galli]

D,

Oh my that is good news about your scan. A decrease from 1.2 cm to 4 mm is substantial indeed. And I'm quite certain precision radiation will eradicate that spot on your arm. A great report that is on the road to NED (no evidence of disease)!

Stay the course.

Tom 

[Rower Michelle]

Yes. Indeed that is good news! 

[LouT]

Great news D!!!  I join the others in celebrating it.

Lou

[BridgetO]

I agree! This is great news!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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[DMaddox]

18 hours ago, LexieCat said:

Wow--great news!! The thing is, there are pretty strict protocols about how long they can give carboplatin. There might not be an option to give it longer than four cycles. The 3.4 uptake doesn't necessarily mean there is active cancer, I don't think. 

You're doing great--keep us posted on the next steps. And don't worry about going on maintenance too soon. For a lot of people the maintenance eliminates remaining cancer. 

I just got an email that I have new test results in my portal. I'm assuming that might be my scan (though it could also be lab results from blood draw yesterday). But my appointment with the doc is in 45 minutes and I'd rather wait and have him interpret the scan and report. If I'd looked at the last one, myself, I wouldn't have grasped the significance. Better not to let my imagination run away with me!

I wondered about the carboplatin and how long it can be given.  The original plan is to do maintenance for 2 years so hopefully with my SUV numbers being so much better and the nodule responding as well as it as, along with the much larger area in my right arm, the treatment I'm getting will be all that is needed.  

Hope your doctor's appointment went well!  I've been thinking about you.

[DMaddox]

Thank you all!  I'm so very excited with these first response results!  I burst into tears of happiness.  Now if these blood clots would go away so my mobility would be better, I'd be on cloud 9.  Whoever thought someone in this position would say that?  LOL!  Your support and kind words mean everything to so many people who sign on to this forum and have to deal with what we have all been through/and will go through.  I'm so glad I found this place!  Again, thank you all!

[LouT]

We're glad you found us too and love hearing your good news.

Lou

[DMaddox]

I met with my oncologist today and, much to my surprise, he says my cancer is already in "remission."  I said, but I've got a 3.7 SUV in my right arm.  He said he will never say the word cure but my scan was fantastic and that the cancer will "always be there" but he considers my results in remission.  He is moving forward with the maintenance therapy - says I'll stay on the Alimta as long as I can tolerate it and Keytruda for 2 years.  They'll PET scan every 3-4 months at first to watch for progress or regress and make further decisions down the road.  Still quoted the 35-50% of folks at this moment make it to 5-years but went on to stay with all the emerging treatments on the horizon that he is beginning to consider stage 4 lung cancer more of a "chronic disease" like diabetes than a certain death sentence anymore.  He says there is a lot of reason for hope and to stay the course, especially since I've done so very well with only four treatments so far.  So, today, I had my first maintenance therapy and will keep on keeping on!  Thank you all for the encouragement.  I mentioned this forum to him and that so many of you are long-term survivors.  He laughed and then went on to say if I had told him that I joined a lung cancer survivors group online 15 years ago, he would have told me I was certainly the only one there.  But, now, it is a different story.  He was thrilled I found this group and that we all have such hope for the future.  Again, thank you all.

[LexieCat]

Sounds VERY encouraging! You're off to a great start--I'll look forward to hearing your boring scan results, lol.  

[TJM]

I second Lexi cat. Boring is good.

Peace

Tom

[Judy M2]

Wow, what great news. Congratulations! 

[LouT]

Excellent news...stay strong and enjoy every day.  
Lou

[DMaddox]

Hi everyone!  Just wanted to update you on my journey.  Back in September of last year, I got the "you're in remission" title and wore it proudly.  Sadly, it did not last long.  My scans in December were great.  In April, not so much.  I had a noted recurrence in a hypogastric lymph node and a tiny tiny spot in the right lung.  This was a recurrence on Alimta and Keytruda as I was still doing maintenance therapy.  My doctor "fired" the Alimta and kept me on Keytruda to date.  EGD, biopsies, and several scans later, radiation and continued immunotherapy was the recommendation.  I did 15 sessions of RT to the lymph node and now we await the next scan, which should be in the next month or two.  The interesting thing to me about all this is that my cancer "morphed" from its original state into something new.  What I mean is, and I am sure you long-time survivors already know all about this, is that our cancers can morph into new genetic forms such that targeted therapies may be available.  My original cancer was run of the mill lung CA with no biomarkers whatsoever.  This new morphology had potentially treatable biomarkers!  No newly approved immunotherapies on the market for my particular biomarker but two current trials of three in the country are being done right here in Indianapolis where I live and one of them at my local hospital where I'm being treated!  All of my cancer metastases have been tiny (with the exception of the broken arm area).  In my lungs, they've all been less than 1.5 cm.  I still marvel about the fact that something so small can cause such devastating destruction.  My doctor says this recurrence does not really affect my 5 year survival chance.  I'm already a year in and, quite frankly, I feel quite well most of the time.  I'm slower.  I need breaks.  I take naps.  I'm still working full-time.  I got my garden in this year, bigger than ever before.  I guess my advice is keep on keeping on!  New treatments are being discovered and trialed every day.  We are fortunate to live in an age where there is hope for stage IV lung cancer.  Everyone around me seems to think I'll be here for a long, long time.  Do I sometimes get discouraged?  Of course.  But, the unpleasantness of the side effects of certain therapies is short-term and perhaps other treatments can be done if one treatment is too uncomfortable to continue.  I just encourage all of you newly-diagnosed folks to hang in there.  Be your own best advocate.  Let these well-informed folks help guide you to options you (or your current doctor) may not have thought of.  Treatment really is just a moment in time and better days are ahead.  You must continue to think positively about your outcome - that really is half the battle!  Best of luck to you all.  I will update on my journey when I have more information to share!