Looking for SCLC stage 4 brain mets survivors

[06211219]

I feel as though I have asked this question - but are there ANY male stage 4 SCLC with brain Mets survivors on here? I look and and see tons of references to “stage 4 survivors” - but I am looking for specific individuals who have out lasted their doctors prognosis. I appreciate all of the positivity, but I do see others ask - and I never see an actual individual with the same diagnosis respond. Just curious to see how they are handling everything. What their course of treatment is? What they have had?

 

Thanks

[06211219]

Wow, 12 hours and 31 views and no responses. To be honest, unfortunately that is what I expected.

[Curt]

There may not be anyone with that exact diagnosis on these boards but there are many people who have faced an equally as serious diagnosis and are able to continue treatment, hope and in some instances remission.  I’m sure others will be in touch to offer their specific story and successes in outlasting a very difficult prognosis.  

[06211219]

Oh I didn’t think his was the only serious diagnosis out yheee. But I’m interested in that diagnosis since that is what my husband is facing. And to clarify, I will always hope it doesn’t turn out as most have -  but I am realistic. And that is why I am asking. 

[Curt]

Having hope while keeping reality in perspective is a healthy approach.  Has your husband gotten any biomarker testing done on his cancer?  What treatments are being recommended?   

[06211219]

I am not sure they offer that for his cancer, although they just may not have offered it. He is currently just on Tecentriq immunotherapy maintenance. He had 10 rounds whole brain radiation for his 7 brain mets and 5 cycles of carbo/etoposide. They didn't feel if offered any additional benefit to do more than that. I talked to his doctor last Thursday and based on his symptoms, high calcium and weight he believes that it is back. He never achieved NED - just slowed the growth a bit "stable", with a few new small 4 mm in his lungs on his scans. I had asked for a prognosis update since we are at 6 month mark and he isn't very confident about him making the year at this point, but wants  to see his CT scan on the 21st to confirm. For me I appreciated his honesty, and listen I know there are tons of things the doctors "can" do, but the question is "should" they. His doctor was usually all sunshine and unicorns, so it was refreshing to hear him say what I can see, he isn;t doing well, and probably won't again.  Someone who is in constant pain, down 100 pounds, can't eat, other side effects - to offer more chemo   (which from what I have read, if it reoccurs within 6 months that particular chemo will not work again) makes no sense to me. QOL needs to be what is most important, so I was hoping there was someone out there that could shine light on this. Not non-small, not Stage I,II or III. 

[Tom Galli]

I wish I could shine that light on a treatment for small cell. There are not many treatment options for this type of cancer except perhaps surgery for an early find or a chemo protocol that shrinks tumors and allows precision radiation to fry the remainder.  Most with extended stage small cell go down the path of your husband.

I hesitated to respond to your initial post because you asked a very specific question and I did not fit your question's criteria.  

But, I was at a point in my third series of taxol and carboplatin treatments where chemo was no longer affecting my tumor.  I had constant pain and appetite difficulties and my wife and I started the process of choosing hospice. Before signing the admission, my oncologist reported a new FDA approval allowing precision radiation treatment for lung cancer and that is what led to my NED.  We were making a quality of life decision by not choosing further chemo and for us, it was a good decision.

I am sorry I don't have that curative light I can shine on your husband.

Stay the course.

Tom

 

[06211219]

Thank you Tom - I appreciate your response. 

[Curt]

I’m sorry you and your husband are going through this.  His condition is very serious and it appears the doctors are trying what is available to them.  Deciding when to continue and when to stop treatment is a really difficult decision.  My father battled Stage IV NSCLC with Mets everywhere.  He continued treatment until the doctors told him he shouldn’t.  There was relief on his part, and quite a bit of sadness on ours, when that happened.  What I found out is that my dad didn’t really know how serious his cancer was.  He thought there was a Stage V when I finally had that conversation with him.  He knew very little of the prognosis and continued on the treatment path he was being told.  The best advice I can give is have as an open a conversation as you feel you can have with your husband about his condition, prognosis and continued treatment.   Discuss that together with your care team and make the best decision you can.  

I wish I had known about this site during my fathers illness.  I’ve only found it since my own diagnosis.  There is a lot of support amd guidance here for whatever path you choose.  

[06211219]

I’m so sorry to hear that. And I don’t believe my husband truly understands either. 

Thank you I appreciate your response.

[06211219]

Actually - I remember being at University of Penn - right after we found out, and he thought there was a Stage V too. 

I have talked to him - and he prefers just to follow their treatment plan, and take everything one step at a time, so I try to respect that, as difficult as that is for me. I’m sure from my posts, I am pretty in your face give me all of the info, good bad or indifferent. That is how I process this. 

Thanks again for your insight, and I hope everything works out for you, my prayers are with you and your family.