Sclc extensive

[Trailwalker]

Hi all.  I have been lurking since February and decided it was time to introduce myself. I am 62 and was diagnosed in February with multiple masses in right lung and liver. Also in lymph nodes. I tried to get in to see PCP in November due to increasing SOB, coughing and wheezing. But because of covid it took until January to be seen. x-ray showed mass in lung. Started treatment( etoposide,tecentriq,and carboplatin) March 15th.  Was supposed to be 3 days but ended up in hospital with heart failure after 2nd treatment. Turns out the SOB, wheezing and coughing were not a result of the cancer but rather heart failure. I had never had heart issues before and in fact was very active hiking and trail walking with my dogs at least 15 miles a week. Although the distance was getting shorter and shorter since September when coughing and breathing issues first started.  Turns out the echocardiogram the pulmonologist ordered in February showed I had an EF of 15% (normal is 60%). Unfortunately Pulmonologist missed it and despite repeated complaints about worsening breathing issues said it was caused by cancer and to bring it up with my oncologist who said that pulmonologist needed to address it. At that point I just gave up, I was so tired and weak. Luckily my daughter insisted I go to ER that day or I probably would have died that day.  Needless to say I now have a new pulmonologist. The chemo caused me to retain so much fluids my heart couldn't handle it anymore. Once they started meds to reduce fluids and treat the heart I could breath better than I had in months. Coughing and wheezing went away and other than being very weak and fatigued I felt like a new person and like maybe I had a chance to fight the cancer. So now until the heart issues are settled doing just 2 days of treatment every 21 days to keep fluid retention down. Unfortunately saw my cardiologist yesterday. The news was not good. Basically it comes down to a race to see what will get me first, the cancer or heart failure. Both limit the treatment that can be used for the other condition. So plan for now is to keep trying different meds for heart till we find something that will stabalize it without causing kidney damage. Trying not to get too discouraged till I talk to oncologist Friday to get his opinion on it all. I am hoping to hear from someone else who is dealing with both cancer and Heart failure. Any information on how you dealt with it and what to expect would be greatly appreciated. Thank you!

[Jesse L.]

Welcome to the forum and know that everyone's input is important. You have a lot going on and it must be really hard to have to deal with it all. For sure as we get older symptoms stop resolving "themselves" and medical care needs to happen. Yes, I know it's a pain but the life you save just may be your own. I've known many older people who will say that there's nothing wrong with them, but what they don't tell you is that they never see a doctor either. Most of those folks don't live very long... 

Up until mid December last year I was as healthy as can be, but since then through an annual CT scan I've had surgery to remove my RLL with a small cancerous nodule, am now involved in adjuvant chemotherapy, just resolved a DVT issue brought on by the cancer and the chemotherapy, and last but not least, I'm wearing a heart monitor for suspected AFIB. 

I for one can't believe it... healthy as can be and at 64 I now have all these issues to deal with. And I too was a big walker; I live in the country and it was nothing for me to walk 20 miles a week or more. We just got to keep at it and fight for our lives. You'll get lots more folks chiming in than just me...

 

[LexieCat]

Hi there, and welcome! I'm sorry you've got so much going on right now. 

I don't know much about cardiac issues--even as they relate to lung cancer. But somebody here may have experience that will turn out to be helpful. 

If you've been lurking awhile, maybe you know about our SCLC forum, which is here: https://forums.lungevity.org/forum/5-sclc-group/. You are certainly welcome to post anywhere on the forums, but you might find more folks familiar with your treatments there. 

Hope the docs can get you back on track.

[BridgetO]

Hi Trailwalker and welcome. You really are in Catch-2 between the cancer and the heart failure. I'm so sorry. I don't know anything about cardiac issues; I hope somebody else on here does. Your first pulmonologist certainly should have!  I wish you all the best.

Bridget O

[LouT]

Trailwalker,

I want to join the rest of my Lungevity family in welcoming you to the forum and our group.  Like the others I have no experience with heart issues, but we here all understand the disappointment, fear and storm of emotions that can go on with these serious diseases.  You've got some good counsel from Lexie on the SCLC postings.  If you have any questions on the cancer someone here would have the experience to help you.  Perhaps we'll soon hear from someone who has dealt with the combination of the cancer and heart problems together.

My prayer is that you hear encouraging news from your Oncoloogist and they find a compatible set of treatments to help address the diseases.  Please stay in touch with us.

Lou

[KM_NRP]

Welcome Trailwalker.  I feel for you and your struggles getting proper evaluations and treatment.  I'm glad they are now getting resolved to the best possible resolutions.  It angers me to know people that truly need healthcare have been put off due to Covid.  Keep pushing forward and stay positive.  There are a lot of good people here (I'm still a newbie as well) that have great advice.  Sometimes you just need to vent. 

Have a great weekend! 

~K

[SamGirl50]

Hang tight and keep the faith!!!