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From Nothing to IV in one day


Jennifer.LP

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Good morning all,

My brother was diagnosed with cancer last week right after Christmas. He is a 48 year old healthy, strong man who never smoked or drank, but took care of his body and ate healthy. In Oct. 2016, while at the gym, he thought he hurt his shoulder while lifting weights. He had muscle pain so he went to the doctor and was prescribed pain medicine and physical therapy. He did all of that and it didn't work. Then the pain started to run down his spine and lower back and all around his neck. He went to the doctor again and they prescribed stronger pain medication and it also didn't work. He then insisted that his doctor do an MRI. The doctor then called my brother on the phone Dec. 28th and told him it looked like cancer. Dec. 29th went to the oncologist and on Dec. 30th he did a MRI and PET. On Jan. 3, oncologist confirmed it was cancer and metastasized to his bones and specifically his spine. That's what was causing the pain. We checked him into the hospital to get the process started immediately and that day they did a full body MRI and MRI of the brain. That very same night they told us that it had spread to his brain and all along his spine. On Jan. 4, they did the biopsy of the lung tumor which is about the size of a quarter. Yesterday we found out it was non small adenocarcinoma of the lung stage 4 and it's very aggressive. They sent off a sample to see if there is any mutation. Today we received news that it has spread to his liver and they will begin target radiation on the tumor in his spine on Monday so he could at least walk without pain. He has never had any medical problems and he was fine last month and now he's in a hospital and the doctors are saying that his days are numbered. This has been the hardest news ever but if anyone out there could give us some hope, we would greatly appreciate it. I know we can fight this horrible disease. I will update and let everyone know of the treatments and hope there could be wise counsel for us since this disease doesn't run in our family. Thank you. 

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Have they talked about starting chemo? The quicker they start that the better but they won't do that till the radiation is over.    once they get the testing back they can figure out the best plan of treatment. Until then they will follow the standard protocol that is proven to work the best with no mutations. People with worse tumor burden have survived so he can to. Keep us posted

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Thank you for your response. Yes they said they will start chemo this coming week everyday. But we are hopeful that the other results of the biopsy comes out with a more specific treatment for the cancer in the different areas. After every test it seems like bad news after bad news. It's hard to keep someone optimistic in the midst of negativity. Of course we can see the reality of the situation, but what frustrates me the most is how a doctor can say "his days are numbered" and hasn't even STARTED a treatment. Anyway, we will be praying and patiently waiting for the results. 

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Thank you for your response. Yes they said they will start chemo this coming week everyday. But we are hopeful that the other results of the biopsy comes out with a more specific treatment for the cancer in the different areas. After every test it seems like bad news after bad news. It's hard to keep someone optimistic in the midst of negativity. Of course we can see the reality of the situation, but what frustrates me the most is how a doctor can say "his days are numbered" and hasn't even STARTED a treatment. Anyway, we will be praying and patiently waiting for the results. 


I understand that feeling of being punched in the gut with each test result and doctor visit. The dread is the hardest part for me. My mother was diagnosed in June with the same disease. Words matter and the doctor's approach to delivering this information seems so unfair. He is young and strong and otherwise healthy. It's very possible that he will have a mutation, in which case there is a lot of hope. I will pray for him and your family. No matter what there is always a plan. Keep us posted


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I really appreciate the time each of you have taken to respond to me. It really makes me and my family feel like we are not alone. We received a little update on the treatment that my brother will be begin to receive. Starting tomorrow, 1/8/17, they will begin target radiation on the area of his spine where he is feeling the most pain. They will be doing it Monday through Friday, have him rest for the weekend, and then five more days. So it will be 10 days total of radiation on the specific areas in his spine. The oncologist expedited the biopsy results and said that we will have some news hopefully on Thursday. My brother has been in the hospital since Tuesday last week (1/3/17) and his vitals have been great. Hopefully he will be discharged tomorrow after his first target radiation. It's been very hard for him and we all have been very strong for him. We have shared with him stories of survivors who had the same prognosis as him and it has given him a different outlook. Today, a nurse who had stage IV cancer but beat the odds, came to visit him and gave him a few words of encouragement. He has his ups and downs, but the uncertainty is the most feared. If anyone has any advice on what else will help him, please let me know. Thank you. 

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Hi Leia,

The hardest thing about cancer is that no 2 stories are ever the same. Some people have surgery & then chemo, some radiation before the surgery. I had chemo & radiation before surgery. There is really no was anyone can say This is what to do.

I can tell you that I have met numerous people through this group and others. There have been so many different situations that I have come across, from stage I through IV with & without mutations. The only thing you & yours brother need to keep in mind is that no mortal man or woman can number the days anybody has left. As I once heard on a commercial - the doctor checked him from top to bottom & there was no expiration date marked on his foot!

The only thing that I offer up my opinion on, aside from not letting anyone play like a god counting your days, is that I would only go to & take people to a cancer center for cancer. I just can't find any sense in going to a regular Dr & hospital getting all kind of germs messing with me or them on top of the cancer, sitting in waiting rooms next to flu patients & whatnot. I want doctors who eat, sleep & drink everything to do with cancer every day, not a GP who tries to keep up on the journals. A cancer center may also be involved with trials. Now, that's just my opinion and has nothing to do with this site.

I'll keep your brother & you in my thoughts & prayers.
Take care,
Mary

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Thank you for reaching out to me. I admire you and the caregivers in this site. Receiving a response to my posts always gives me the courage to press forward and not quit. My brother is in good spirits and was discharged yesterday after his first radiation treatment. He is relieved that the doctors are finally starting on a treatment plan. Yesterday and today they did target radiation on his lower back where he has a tumor that is causing him the most pain. Tomorrow they will do radiation therapy on the whole cerebellum of the brain and his spine. He's a bit nervous about it, but he's been positive. He has his ups and downs but he doesn't want to give up. Hopefully by Thursday we will find out more results of his biopsy. I will update as soon as I know. Truthfully, it has been prayer and hearing God's Word and positivity that has changed his outlook. Thank you all for your thoughts and prayers. I really really appreciate it. 

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Leia,

I know this is a lot to digest - any cancer diagnosis is - but to have a doctor say days are numbered must be too much.  I'm not doubting your brother's medical team, but has he pursued a second opinion?  Is he eligible for any clinical trials?  There are so many stage IV patients running around living their lives like the cancer diagnosis isn't there.  Because your brother is young and otherwise healthy, he is a step ahead.  Please know we're all here for you and will do our best to answer questions and share experiences.  

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Leia,

I've just read into your Christmas nightmare.  You asked for hope for your brother.  Here is my short version: if I can live, so can your brother.

Spagno, Mary, and Susan offer sage advice.  I'll expound a bit.  Tell your brother to look at his handsome face in the mirror every morning and unless he sees an expiration date stamped on his forehead, he should enjoy the day.  Projections are just that, they are educated guesses that are often wrong.  Proof?  I went from six months projected to almost 13 years actual survival.

And here is a blog that may offer your brother some useful advice on surviving lung cancer.

Questions?  This is the place.  We are the lung cancer professionals, not by education and training but by actual experience.  We designed the tee-shirt everyone else talks about wearing!

Stay the course.

Tom

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Hello everyone,

I just wanted to update you all on my brother's progress. He's been doing target radiation since Jan. 9th. They started with his larger tumor on his lower back and now they are targeting the cerebellum and he has been doing good so far. He gets a little nauseous and tired, but he still has his energy. This past Tuesday he was fitted for a mask for his brain. Since most of the tumors are in the cerebellum, the doctor decided just to treat that whole area, but there are only 3 small tumors in the cerebrum, the doctor wants to do radiosurgery to those 3 tumors. So the mask will cover all of the other area of the brain and just leave those 3 areas exposed for the treatment. He will get that done next week on Wednesday. Last week on Jan. 12th, we received news that there was no mutation in the biopsy on this first series of tests. Today, we received the final results and received news that were is absolutely no mutation at all. So the only thing left is chemotherapy. My brother was hoping to avoid chemotherapy because of all the things he hears about it, but he certainly cannot and does not want to avoid it now. This will start right after they finish with his radiation therapy. Next week he will also meet with a doctor from MD Anderson to see if there are any clinical trials he could participate in, but those wouldn't start for a few weeks and my brother wants to get all his treatment done now and not wait. As of now, all we can do is wait and pray that this is the correct treatment. He has kept a positive attitude although it gets very hard sometimes, but he has great support in his family. 

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Leia,

Thank you for sharing the progress on your brother's treatment.  I'm thrilled he'll get an opportunity to check out trials at MD Anderson.  I'm from Friendswood so I'm fully aware of the opportunities available both at MD Anderson and in the Med Center.  As for the cancer, I didn't have any mutations either.  I went through four rounds of chemo with cisplatin and alimta.  My side effects were manageable.  I had fatigue, nausea, some neuropathy and tinnitus.  The tinnitus is the only thing that still lingers and I finished treatment in May.  My oncologist provided two different anti-nausea meds that I could piggyback in the days following chemo.

I will keep you all in my prayers.  I believe in the power of prayer and a positive attitude.  

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We met with a doctor from MD Anderson today as a second opinion on my brother's treatment and he finally has a course that he will be taking for his treatment. The radiotherapy helped with the pain in his lower back, but he started to feel new pain in other areas. He did the radio surgery this past Wednesday on his brain and he survived it. He lost some of his hair behind his head, but he laughs about it and says he's going to get a "nice fade." As for the doctor we met today, he was a little concerned because my brother developed pain in his lower right and left calf and ordered an ultrasound. Sure enough it was what the doctor suspected and he had developed blood clots in both. The doctor quickly ordered Fragmin as a daily dose and said he will be on it for at least 6 months until further review. My brother will start chemotherapy on Monday, and the MD Anderson doctor together with his current oncologist, agreed on a first line of treatment with a platinum-based chemotherapy of Carboplatin + Alimta. He is also adding Neulosta as a white cell booster and Zometa to keep calcium from releasing from his bones. He will receive 2 cycle treatments (6 weeks) and then get tests done to see if this line of treatment has worked. We are hoping and praying that he will have the minimum amount of side effects and that we will get some good news. After receiving the news of the blood clots, I can see how disappointed he has become. Because he hasn't heard one "good news" some from the doctors. He went from a healthy man with no health problems at all, to a man developing all these new symptoms out of nowhere. It's been such a hard time for him and for all of us. Please keep us in your prayers. I really appreciate this website and the encouraging words from experienced survivors. 

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Leia,

OK - so let's review the bidding.  MD Anderson as treatment center: world class place.  Radiation worked.  Blood clots discovered before they could cause serious damage. Fragmin works.  First line chemotherapy of Taxol and Carboplatin worked for me.  Your brother is getting a more effective pairing that was unavailable at the time I underwent chemo.  It should work. Zometa to harden bones is typical as is Neulasta to boost WBC and likely Procrit for RBC.  The Neulasta injection is painful as is resultant bone pain in the long bones.  But all three of these treatments work.  So, I'm bidding "small slam" (Bridge Card Game analogy).  I'm also suggesting one or several Denny's Grand Slams after each infusion because steroids administered before chemo drugs will make him extremely hungry.  

Chart the onset of side-effects (day - date & time after infusion) because they will occur with the same frequency after each infusion.  After the first infusion and knowing the side-effect cycle, consult with the chemo nurse about starting side-effect mitigating medication about an hour before the onset of each effect.  This worked for me. 

Keep us posted and stay the course.

Tom

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  • 7 months later...

It's with great sadness to inform everyone that my brother lost his battle with cancer on August 22, 2017. I just want to be honest and vent a little bit. This disease is one of the worst possible diseases anyone can die of. The last few weeks of my brother's life was in pain and suffering. Sometimes I didn't even think the doctors knew what they were doing. Once the cancer spread to his liver, the doctors gave up and said there is nothing else to do. My brother still had lots of strength and urged the doctors to do whatever they could because he didn't want to leave a 7 year old girl and a 10 year old boy to be raised without their father. I get it, there's only so much they can do, but I feel like they have a certain protocol to follow and they don't look at it case by case. My brother was just another person on the list of others to diagnose and look at. It saddens me and hurts me that he was so young and the cancer took him so quick. He had no warning and he was healthy all his life and in less then a few months, he's gone. I'm still in disbelief, but he had faith in God and I know he's in a better place. I wish the best for all those struggling with this disease and pray you will not be a statistic but you will overcome this disease. 

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It is indeed sad and your pain must be near unbearable. 

Thank you for helping your brother during his arduous treatments, and thank you for letting us know of his passing. We will grieve his loss.

Stay the course.

Tom

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I am very sorry for you and your family's loss.  I am hoping that one day soon you and your family will find peace in these heartbreaking times.

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Jennifer, I am so sorry for your loss. Lung cancer is a terrible disease. You and your family are in all of our hearts. We will continue to work every day to raise awareness and funds for more research in honor of your brother and all those we've lost. Thank you for being part of this community. We will always be here for you.

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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