16 years out
Hello all,
Been a long time since I posted. Just as a hopeful message to those out there. 16 years ago dx with stage 4 colon cancer, mets to liver and lung. After 10 years of whack and mole with chemo and surgery, I have been just lucky that it hasn't popped back up again. My son, who was in 6th grade when this started , now has a too huge paying job in tech, a patent, married and has a baby girl on the way.
My daughter, who was in 4th grade, now is the program director for a large historical foundation.
I so remember just wanting to see them graduate elementary school... Fall down 7 stand up 8.
All my best
Chip
Comments
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Hey Chip, good to hear from you, with some voices gone silent you may be the senior survivor at 16 years out, to still have a voice here. A couple other ''back whens'' stopped in recently, but I've forgotten the numbers. Either way it's a solid voice of hope you're bringing with a specific late-stage survivor tale that many need to hear, thanks for that, and it's great to hear about your kids, now serious adults doing well.................................Dave
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Chip,
Great to hear things are going well and you have had all these "extra" years since DX to see/have so many family experiences. It was hard to hear Alice passed, and seeing your post really boosted my spirits. I feel like I don't take for granted very much concerning seeing kids and gkids grow and it sounds like you don't either. I was not sure if I was going to see gkid one, now I have fourteen. Truely life is good...Although, my oldest just turned 40 in Feb. He is gonna pass me soon, I just know it. How is that even happening...maybe chemo brain...
Rick
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Thank you and congratulations to you.
allmy best
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I would love for you to talk to my son who was diagnosed June, 2020. He is waiting for 4 line treatment. He has met to lung and liver.
He is under care of Keck Medical in Los Angeles. He is a very positive person, but afraid he is getting weary.
Can you tell me what your treatment was 16 years ago?
Thanks.
Lu Ann
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So sorry. Here is what happened basically for me:
colon surgery, folfox for 4 months using CEA as a marker, my tumors shrank so the ideas was chemo is working so now let’s do surgery. Liver surgery, 8 months of chemo, first lung surgery, then scans for every three months. I had 3 more thoracic surgeries as Mets popped up. I am happy to talk to your son. I was 48 when it started. I did eat healthy, exercised and stayed away from people especially anyone sick.
There is hope but everything is so random by person.
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I went to Stanford. Onc. George Fisher. I live about 4 hours away but this was easier for me to drive there from Santa Barbara area than down to LA due to traffic.
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Thank you for sharing. My son is 58 years old. He is being treated at Keck Medical (USC). We live in Palm Desert so it is a 1 1/2 hr to 2 hr drive for him. Fortunately, Keck is on the east side of LA and nearer us. If we had to go to UCLA, Cedars...it would be another hour.
His doctor is Dr. Heinz Joseph Lenz. He has a wonderful reputation. We do think we are in good hands. He has not had any surgeries nor radiation at this point. He has been treated with chemo and clinical trials (immunotherapy) which have kept it under control and has had some shrinkage of lesions. He recently was taken out of his last clinical trial because CT scan showed very small new lesion in liver. He is now waiting for next step treatment and plan. His last drug caused anemia, so he has done two blood transfusions and one iron infusion for last two weeks. I loved your coinage of "scanxiety" ...a perfect description when scans are done and waiting for results. Fortunately, Keck post results almost immediately.
As a Mother, you can imagine how my heart was broken with this diagnosis. He is the youngest of my three sons.
I stumbled on this website through ACS. I was looking for possible help for me, his husband, and him...psychological help because this is a nightmare for us, and I think we might benefit from some psychological help .
I do know it is key to get to the right place for treatment, and we did that. That was a blessing. However, it has been helpful reading all the stories of the survivals on CSN. And, we are always looking for something more that we should be doing. I am thrilled to see so many successful outcomes.
We love Santa Barbara...and we go there often for breaks from our heat in the summers.
Again, your story is terrific...such a wonderful story of survival. It helps a lot reading all the survivors' stories. I have always thought that my son would beat this. I knew it wasn't going to be easy for sure.
Lu Ann
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I have heard great things about Dr Lenz. There may be options like cyber knife or RFA to treat smaller mets if they can not do surgery. I am friends with a woman from Thousand Oaks who like me is about 16 years out from Stage 4 as well. There are more out there than you read about. Mentally, it is hard to stay in cancer mode all the time so you might not read as many here. I did read lance armstrong's book, Its not About the Bike and that was inspiring to me.
All my best
Chip
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Thank you so much for posting this! I read it to my son and he said it filled his heart with happiness. My son, Johnny, was diagnosed last December (2021) with stage 4 colon cancer with mets to liver and lungs. He's 33 years old. He had a colectomy that left him with 19 inches of colon. After that he had some complication with the wound so he needed a wound vac for 4 weeks. He started chemo about 7 months ago. He get folfoxiri + bevacizumab. He's had 2 scans since, first one showed a decrease in his lungs Mets amd a 30% decrease in his liver Mets. Last scan showed that the Mets in the lungs are nearly resolved and a decrease in his liver Mets. His CEA is at 2.8 ng/ml. The doctor is very happy with results. He has a lot of faith, as we all do in the family and we feel that's very important for his healing.
May I ask if you are, then, in remission or fully cured?
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So sorry we had to meet here. Faith is a very good thing. Decrease in met size is wonderful. This was what my surgeon and oncologist used to justify surgery. Basically if chemo is killing the cancer, lets finish off the larger tumor with surgery. The word cure was never used at Stanford. essentially, after 5 years of no recurrances, my insurance would no longer cover scans. My Onc said that I am back to essentially the same chance that anyone can get cancer. I do have 3 year colonoscopies. Currently, there is no evidence of disease (NED) and that is what I go with.
All my best
Chip
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That is a wonderful! I feel it's a miracle, truly. That is what's in my prayers daily, that his tumors get smaller so he can have surgery. I definitely believe that I was led here to read your post. Thank you for posting and also responding, it's been a hard road but testimonies like yours are a breath of life. I'm so immensely grateful for your new life 🙏
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Thank you, you are very kind. I was treated at Stanford Hospital. I live about 5 hours away so it was always a haul. I went there because they had the surgeons who could do the liver and lung surgeries. I suggest you speak with the onc. about surgery or RFA. I also suggest you set up an appointment with a liver and or lung surgeon about taking these out. If you are near a large cancer center or can find one, that is helpful. The oncologist almost always want to do chemo. The surgeons want surgery. Most oncs will say, once it spreads then surgery is off the table. This is not always the case, perhaps for insurance reasons. If you go to the surgeon and they say they can get the tumor, you can always tell the onc, that the surgeon can do this based on tumor location. Then you might have a longer term plan. You gotta convince them that this is the healthiest you will be, that you want to throw everything at cancer you can.
Lots of prayers and hope your way
Chip
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He gets treated at Houston Methodist in Clear Lake, Texas which is also where he works. He's an ER charge nurse. His onc hasn't mentioned surgery at all. Thank you for the advise, we will definitely talk about surgery with her and look for a surgeon.
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I have so much enjoyed reading the posts. I think it helps to share, even though each patient is really different, I feel.
I am so happy for both of you and your successes. We are still struggling. Now, we are waiting for third line of treatment at Keck.
I have faith, too, but sometimes it has been hard to keep the faith. This has been such a nightmare for us.
I think reading testimonies like you two are so important for those of us who are still struggling. Thank you for sharing because it does give us hope. And, so I am so happy with your successes.
I know Chip lives in Santa Barbara. Emmanuel89: May I ask where you live? I do believe you were lead to this website and to Chip's post.
I can relate to you so much because your are a Mother and this is your dear, dear son. It is same for you.
Thank you again for sharing.
LA
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I have too enjoyed this post so much. Resiak, we live south east of Houston in Texas. Juan had his diagnosis and colectomy at Houston Methodist. We also tried for a clinical trial at M.D.Anderson right after surgery but it kept getting delayed because his hemoglobin was under 9 so he received 2 blood transfusions. When he finally got to 9 his bilirubin was too high and he was kicked out before even starting. That was horrible, he was really sick at that point. His eyes started getting yellow, he got ascites and his skin was a grayish greenish color. At this point he had also lost a lot of weight, he went from 210 lbs before diagnosis to 140. He started chemo right away because both oncologists from Houston Methodist and M.D. Anderson requested an urgent start. He was VERY close to not be able to get chemo at all.
And you are so right, being a mom and seeing my son (he's the oldest of 4) go thru this and the thought of losing him was unbearable. During that time, I also found my faith again (I had veered away for a long while) and Juan (a non believer that relied on science only) became a Christian also. In his words, he had an encounter with God during his stay at the hospital post surgery and that was a moment he was never able to duplicate again.
I prayed that the Lord would take this illness from him and give it to me but, we know that's not how God works. This is what I believe, God already knows what's going to happen. I have faith that if He wants to cure my boy, He will. If He's willing, He will. And I have faith in that. Nobody knows God's plans, but I believe that what He wants, will be done.
Sorry for the length of this! I have never, ever in my whole life (I'm 52 years old) went thru the pain and desperation of those dark days. I have faith, and hope and that sustains me and my family. I hope I helped a little ❤️ and I'm so happy I found this forum, it helps so much.
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Emmanual86: TY for sharing. You are in a wonderful place for treatment. Right doctors and right treatment are so important. It’s a blessing you are close to MD Anderson and Houston Methodist!
I can relate totally to the things you shared. I have prayed, too, that God take me instead of my son, as well. I have been religious but my faith has certainly been tested. I am close to my Methodist minister who has helped me.
As you read from my posts, my son has not had surgery or radiation. He was on two clinical trials which seem to have kept it under control. I pray that lesions will be eradicated!! He had to be taken off of last trial after 4 mos…so toxic. His hemoglobin was 7! He had two blood transfusions. It was Phase 1. I do think we are blessed to have found our way to USC…Keck Cancer Center. His onc is very well known. . We live 138 miles from Keck in Los Angeles. Traffic is bad, so it’s not an easy trip, but well worth it. Now, onc looking for new trial and new treatment plan. Waiting is exhausting but gives him time to recuperate.
Suggest you read, Radial Remissions. I found that helpful.
Let’s keep sharing. It is helpful. As you..this is the very worse nightmare I have ever experienced.
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Was chemo part of his clinical trial? And has he had a scan since his last round?
It is definitely a blessing that we live in Texas. We actually moved here from California almost 3 years ago, it seems like a miracle now. Houston Methodist has been amazing.
I agree, let's keep communicating, I've found great info here, especially on this specific post from Chip.
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My son has been on various chemos since July, 2020 starting out with Folfox/Avastin. then Folfiri/onvansertib and MVAS1. Then, he had two clinical trials one of which was an immunotherapy and one a chemo that targets his type of tumor. From time to time, there was some shrinkage, but I would have to say at best, the treatments have kept it in check. There has been no surgery recommended, as yet. As I said before, this has been the very worst thing I have been through. I know you can relate. I so wish it was me instead of my son. I have had a full life. My son hasn't.
I have prayed and prayed. There have been so many prayers lifted up for him. I still think he will beat it. It is going through a very bad spell right now while he is waiting for the next trial and the next treatment plan. The last clinical trial was so toxic. We hope he can recover from it in order to take more treatment.
Has your son had genetic testing done? I am sure he has. My son has KRAS mutation which there really is no drug that targets it. The first trial he was on is for KRAS, but he didn't really have good results.
The best of luck to you and your son. You have a wonderful attitude and that helps a lot.
Please keep in touch.
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