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Pet scan shows it's back


Daughter74

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Hello. My father had chemo for four rounds (3 days in a row every three weeks for 12 weeks). Then he had a scan which showed either the tumor was gone or had shrunk down so small they couldn't see it (I don't live near him so I only go off of the limited info he shares with me). They stopped the chemo and he enjoyed life until he got a chest cold but he came out ok with rest and antibiotics. Well, he went for his six week PET scan and called to tell me the tumor is back and "it's bad." He never told me what happened to or how the cancer in his liver and bones were post chemo the first time so I'm not sure if they got better? They will do an MRI to see if he has anything in his brain. I also don't know why but they had once planned six rounds of chemo but then only did the four.

Anyway. Can anyone tell me what this means? Is it normal to have it come back this soon? How effective will the chemo be this time around? He said he will go for five days in a row every other week. I'm worried about him and I know he's scared but I don't know what it really means. Any info would be helpful. Even some terms would be great, for example, what is it called if it comes back after getting better? It's not like it was remission if it only went away for six weeks, is it? Ok, thanks for th help. 

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Daughter,

I am so very sorry to hear of your dad's recurrence.  That is what it is called when cancer returns -- a recurrence.  And unfortunately, recurrence with lung cancer is common.  I have non small cell squamous cell lung cancer and experienced four recurrences after treatment that showed me to exhibit no evidence of disease or NED.  Because lung cancer and in fact all cancer for that matter recurs so frequently, the treatment community has moved away from the word cure.  Remission is still used but the definition has narrowed to cancer that stops growing either as a result of treatment or not.  Here is a good summary of lung cancer that will acquaint you with basic terms.

What is the recurrence timeframe?  Mine were 6 to 8 months after last treatment.  It is not unusual that the duration is shorter or longer.  Everyone's cancer is somewhat different.  How effective will his second line treatment be?  The Lord only knows.  Cancer is a disease of one's genes.  Everyone's genetic structure is different thus on reason for the variability in treatment outcomes.  But, chemotherapy kept me alive for 2 years till a new treatment emerged from research to cause me to achieve NED.  In fact, I've lived nearly 14 years after diagnosis and many in fact on this site are long term survivors of lung cancer.  Those with small cell lung cancer are following emerging research in targeted therapy and immunotherapy.  These new methods are promising advances for small cell treatment.  Read about these here at the Clinical Research Study down arrow.

You may point your dad to this site as a place where he can understand and ask questions about his treatment and interact with survivors. Questions?  This would be the place for those.

Stay the course.

Tom

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Thanks so much Tom. I really appreciate your help and kind words, as well as the links and definitions. My dad went a whopping six weeks. His tumor is back to 80% of its original size at initial diagnosis. He will have second-line treatment chemo starting next week. I've since read more and realize that his time frames aren't helpful to his cause but of course we will stay positive. They are using the Topotecan chemo drug five days in a row every other week I guess? They plan to do five rounds but during his first treatment, he was planning to do six and they stopped at four (I can't tell if it was because it was going so well or if it was because the side effects were too great). Anyway, we shall see how he does. I imagine he will have a scan sometime into his treatment? 

Am I right to say they will do chemo to see if they can shrink the tumor again, do a scan and see where it is and then either continue chemo (if it's going well) or discontinue it if it isn't helping enough? There was mention of doing a trial IF he makes it to Christmas?? I don't know what that's about. Shrug. 

My dad is very down about everything but he would never ever come to a forum like this. He's actually a doctor himself and I think he's experiencing so many emotions. I can't even begin to understand, but I hope to be educated and then be supportive of him in whatever way he will let me. We've had a hot and cold relationship my whole life (I've never lived with him) but I will always honor my father and would do anything to help him and hold him up through this. So thanks for allowing me to pick your brain and learn what I can so I'm able to pass it on by caring for him.  

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Daughter,

I would say the objective of second-line treatment is to achieve a reduction or elimination of tumor or tumors.  You are correct, there will likely be an in-process scan about midway through and then decisions on continuing or changing therapy.  

Your dad will need his family to close ranks around him.  Lung cancer treatment is not easy, especially the daily treatment like your dad will endure.  My view, past relationships are immaterial.  I would not have made it through my treatment without my wife and daughter.  Their contribution was immeasurable. I am quite sure your dad will appreciate your engagement.

By all means, pick our brains.

Stay the course.

Tom

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Your dad sounds a lot like how mine was (not coming to this site, etc..)  as a doctor he may know well enough to avoid situations where he will read something negative or not encouraging to his situation- he may also want to give you your space to get support, etc...

Find some inspirational stories and print them off for him to read.  You can also visit the clinical trial navigator and trial finder app to find trials for those with small cell and print those off for him (or his doctor) to read.  My dad found that helpful.

I don't have more to add that Tom hasn't already said.  Please know that we are here for you.  Keep posting.  It helps,

Best hopes,

KatieB

 

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Thanks so much for this KatieB. How did your dad's treatment go? I'm so sorry you've gone through this too. I really appreciate the support I've gotten here already. <3

I haven't heard back from my dad since he called with his scan news. I know he got his results from his brain MRI and he started his chemo Monday. I'm sort of surprised he hasn't called because he usually does on his way home from the hospital. I'll try calling him tomorrow. 

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My dad had extensive stage sclc almost 15 years ago when there were very few options.  He had every side effect in the book.  It was a difficult time.  Since then, I've watched lung cancer research grow and funded and have seen many breakthroughs in treatment and medications.  There are many more options today.

As for your dad not calling- he may be trying to protect you- his little girl.  Always his little girl.    My dad didn't want me to worry.  He didn't want to share "bad" news or uncertain news with me.  It look many months for that to change.  Maybe your dad is trying to shield you from news until he knows more or until there is "good" news to report?

Talk to him.  Let him know you can handle it and you will be there for him.

We will be here for you.  Keep posting and keep us posted!  

Many hugs-

Best hopes,

KatieB

 

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Thanks for your thoughts on this. I called my dad today. He seemed in good spirits but he got off the phone as soon as he could without being rude. He didn't talk about the MRI at all. I just kept it light and tried to make him laugh by admitting my kids, who I love dearly and my life revolves around, are grating on my nerves! It cracked him up because I've NEVER said that before! I told him I'm finally admitting I'm ready for school to start. He said he gives me credit for never having said that before now, my son starts high school and my daughter will be in fifth grade. He says he's impressed I held out so long! 

All that said, my dad has never seen me as his little girl, we've spent at least half my life not even speaking. His wife has been the wedge between us since I was literally a baby and I've not lived with him since he moved in with her when I was two. I think it's more about him not wanting pity or to acknowledge the severity of his situation. I also so vividly remember his wife urging him to quit smoking a few years back saying no one will feel sorry for him when he gets lung cancer. So I'm guessing he's dealing with shame as well, though is most definitely isn't coming from me. My view is that everyone should live their lives and no habit is better than another. I have no criticism of him whatsoever, only love. And forgiveness. 

Anyway. I texted my adult half brother. He told me the cancer has spread to his brain. 

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Crap--sorry to hear that news.  I was fortunate enough to be early stage so I'm not much help in terms of treatment or what to expect.  Thankfully there are some very knowledgeable people around here who can give you more guidance as far as that goes.

I know that for myself, personally, I can't stand the thought of anyone worrying about me.  I think it's nice that you made him laugh, and that you are having this opportunity to connect after so many years of estrangement.  My guess is that he's feeling some regrets about not being closer to you--before I had my surgery, I was doing some of that soul-searching.  I'd suggest just kind of following his lead.  Maybe your half-brother can keep you informed about the details and you can just provide whatever emotional support he seems to want.  

Just sending you a hug, if that's OK.

Teri

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Thanks so much Teri. And yes, hugs are so appreciated. Actually, that's something I'll always remember from my dad, he has this phrase: "feel my hug." I've always loved that, for whatever it's been worth over the years. And I do think he's having some really hard internal struggles for sure. I wish I could whisper in his ear that he's been forgiven by many for years now. He needs only to enjoy his family now. 

Can anyone discuss this news? Recurrent SCLC after six weeks, 80% regrowth of the lung tumor, metastases in the liver, bones and now brain? I just don't know if the brain makes things much worse or just worse. Thanks again to all of you. You're literally my source of info. <3

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Can anyone discuss your report of your dad's condition? Sure, but with lots of hesitation. Small cell is a beast! Therein, my reluctance to discuss the implication of his recurrence and mets to the liver, bone and brain.  From my reading (and likely yours) your dad's pattern of metastasis fits the typical profile for small cell.  And as far as brain mets go, I see very little difference between "much worse" or "just worse."  Small cell metastasizes quickly and now chemotherapy is the only curative weapon available.  There are trials and recent advances in immunotherapy in certain instances but there is that dearth of research ever present that hamstrings doctors treating any form of lung cancer.  Unfortunately, small cell gets a double dearth.

Does that mean give up? I don't believe so because we hope his second line treatment arrests his disease.  But, it may only slow the disease but in so doing it extends life. I was at the same point your dad is at now.  I have Squamous cell NSCLC and experienced four recurrences after NED treatments.  I was mid-point into my fourth line treatment of Taxol and Carboplatin and my oncologist was running our of bullets.  My wife found the magic bullet -- stereotactic radiation -- in her reading.  We had booked a Hawaiian cruise and thought of cancelling.  But all my doctors strongly encouraged us to go cruising and we did.  We took some time to live and while that trip was 10 years ago, we still share pleasant memories.  So there is time.  There is time to rediscover your father and make pleasant memories.

Stay the course.

Tom

 

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New plan for me, my dad and I planned for me and my family to go visit after his whole brain radiation this week. He's been putting off my visiting for a long time now. It's either that he doesn't want to plan too far ahead or he says his blood count is too low (he canceled twice before because of this). In my mind, he doesn't seem to want visitors. I think he doesn't want it to feel like people are saying goodbye (I may have said this before). Anyway, he just canceled again. Said his blood count is low, even though even he has said, in the past,  when  he gets a shot to help, he bounces back within a day or so, and we weren't going to be there until Saturday, we were going to stay at a hotel and would only stay an hour or whatever he could handle. We'd wear masks if he wanted as well. 

But it is clear to me he isn't into having us. He said his radiation oncologist thinks he can blast his brain mets away for at least a year. He's getting his chemo for recurrent SCLC but "feels great." And his wife won't talk to me or let me know anything. I'm going to just leave it in his hands. I can't force or make him want to see me. Only the good Lord knows what he's thinking. I'm just glad I saw him when I did and that I made peace with our tumultuous relationship and forgave us both years ago. 

Thanks to all of you for supporting me and being there for me to learn what I have. It meant the world to me. I certainly won't give up hope for my dad, I'm so glad for him that there are still options that I wouldn't have known about had I not come here. I'm sure I'll keep coming back to learn, and see if I could pass things on to him. You all deserve the very best care and health. <3

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  • 2 weeks later...

Hi, Daughter74,

I'm glad you've been able to make connections and find helpful information from this community. Thank you for opening up not only about the challenges with your dad's lung cancer but also in your relationship with him. We won't give up hope for him either! Please stay in touch and feel free to ask questions and join in the conversations when you can. We are here for you!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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