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Neuroendocrine lung cancer .


Seventhson

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Thanks for sharing your update.  I don’t think there’s anything more terrible than knowing a treatment is available but not accessible.  

I don’t like it when meaningful people give useless advice but here is my two cent attempt: DON’T GIVE UP!  I think you’re onto something by reaching out to other facilities in Canada.  Trust but Verify as Ron Reagan used to say.   My mother taught us to really advocate for ourselves & not take no for an answer.  She made good use of the elected officials & when lodging a complaint this lady didn’t believe in a shot across the bow- she went to the big guns first.  Starting at the top of the organization & then worked down.   

When I worked for insurance companies here the fastest way to get a claim appealed was when a Senator’s office or the media came calling. 

Think about how to use the big guns in Canada. Your life is worth fighting for! 

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Seventhson,

I am so sorry I missed your post yesterday.

There are many benefits to a national health care system but you've just encountered the biggest problem -- getting in line.  I can't give you ideas for how to motivate officials in your country to accelerate your surgery, but I know Canadians who've crossed the border to obtain out-of-pocket health care.  Unless your pockets are deep enough to cover surgical recovery cost and further treatment, crossing the border is a bad idea.

But, here is my point: cancer cells grow fast, but not that fast.  A surgery date in February, even late February, ought to get the job done.  As for enjoying life, you should be doing that regardless of cancer.  That is the point of life, so do indeed live a little.  Go to Cuba for vacation (really inexpensive I hear) and come back for treatment.

Stay the course.

Tom 

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16 hours ago, Tom Galli said:

Seventhson,

I am so sorry I missed your post yesterday.

There are many benefits to a national health care system but you've just encountered the biggest problem -- getting in line.  I can't give you ideas for how to motivate officials in your country to accelerate your surgery, but I know Canadians who've crossed the border to obtain out-of-pocket health care.  Unless your pockets are deep enough to cover surgical recovery cost and further treatment, crossing the border is a bad idea.

But, here is my point: cancer cells grow fast, but not that fast.  A surgery date in February, even late February, ought to get the job done.  As for enjoying life, you should be doing that regardless of cancer.  That is the point of life, so do indeed live a little.  Go to Cuba for vacation (really inexpensive I hear) and come back for treatment.

Stay the course.

Tom 

 

20 hours ago, Rower Michelle said:

Thanks for sharing your update.  I don’t think there’s anything more terrible than knowing a treatment is available but not accessible.  

I don’t like it when meaningful people give useless advice but here is my two cent attempt: DON’T GIVE UP!  I think you’re onto something by reaching out to other facilities in Canada.  Trust but Verify as Ron Reagan used to say.   My mother taught us to really advocate for ourselves & not take no for an answer.  She made good use of the elected officials & when lodging a complaint this lady didn’t believe in a shot across the bow- she went to the big guns first.  Starting at the top of the organization & then worked down.   

When I worked for insurance companies here the fastest way to get a claim appealed was when a Senator’s office or the media came calling. 

Think about how to use the big guns in Canada. Your life is worth fighting for! 

Yes you are right we have to fight here. I am lucky to be in a position to fight. Well enough to fight. Thanks for the encouragement. Was discouraged by my conversation with ,Dr's office but alright now and ready to fight. Thks. 

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16 hours ago, Tom Galli said:

Seventhson,

I am so sorry I missed your post yesterday.

There are many benefits to a national health care system but you've just encountered the biggest problem -- getting in line.  I can't give you ideas for how to motivate officials in your country to accelerate your surgery, but I know Canadians who've crossed the border to obtain out-of-pocket health care.  Unless your pockets are deep enough to cover surgical recovery cost and further treatment, crossing the border is a bad idea.

But, here is my point: cancer cells grow fast, but not that fast.  A surgery date in February, even late February, ought to get the job done.  As for enjoying life, you should be doing that regardless of cancer.  That is the point of life, so do indeed live a little.  Go to Cuba for vacation (really inexpensive I hear) and come back for treatment.

Stay the course.

Tom 

Thks Tom. Always good to hear your advice. Guess really I am not expecting to get my surgery in Feb.  Have little faith in our health system. If I leave the country on vacation or to seek treatment I will loose my benefits and probably my job. But not sure they are reason enough not to go anymore. I might regret working about that and wish I had just gone. I hope you are right about the cancer growing slow. Everything my shoulder or arm hurt I think it might have spread. Doing some renovating to my old house and that helps occupy my mind. Thks again. 

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I'm not at all versed in what's best to do. I have my first oncology appt next Friday. My arm and shoulder hurt like everything when I do repetitious moves or heavy lifting. I wonder the same thing. And a pressure is in my neck and up my skull. However, my gastroenterologist said he believes that pain radiates from a sludge filled gallbladder. Sludge can't be seen on imaging only stones can. I so like that you are taking charge! I like your passionate determination to beat this. Prayers for you, Seventhson. I hope a date opens up for you much sooner. And please don't go away from here. We want to hear your success story. Sounds to me there will be one.  Dear God go before him and prepare the way. Amen! 

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I will pray for you and your family.  I’m so sorry to hear about this.  I can’t imagine how you are feeling right now.  Please share whatever information you’re comfortable with us so your forum friends can support you.  A big hug too.  

Michelle

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Thks. Just feeling tired of dealing with cancer. 

Dad is 85 yrs old and today was told he has cancer in both lung that is not operable. Each lung has a different cancer. One is from smoking. He will go for a PET scan soon and a brain scan Friday. Has a good appetite today. Coughs up blood. Seems worse at night. But doing O.K . So far. Has lost about 35 lbs. mom is really worried even though she is trying to hide it. She is still waiting for her appointment date for her biopsy of nodule in thyroid. Brother had a scope to check for cancer and will have bladder checked right away and other tests. Not sure why doctors ordered that right away. Went to visit friends tonight cause their brother is returning home from hospital tomorrow. He has entered into the palliative care program. So much cancer here around me and everywhere. Just wish I could get away from it for a week but not the time to be away from parents right now. 

Thanks for the kind words. It will be what it will be. Nothing I can do about it anyway. Just wait and see what comes. 

 

 

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Seventhson,

I am sorry that your world has been consumed by lung cancer.  I hope that you can find some peace from time to time in all of the stress that you are enduring.

Take Care,

Steff

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Seventhson,

There is always hope.

I wish I had sage advice that would eliminate the cancer in your family.  I don't. All of us share two realities in life: we are born and we die. We have no influence over these two events.  But, like we prepare for a new infant to join the family, we can prepare for the end of life.  The first step, particularly as it concerns your father and brother, is to decide on treatment. I strive to enjoy my life despite my many impairments. When I can no longer enjoy, and when faced with the prospect of an arduous treatment routine, I would choose hospice over curative treatment.  At one point in my treatment experience, I was one oncology consultation away from a hospice admission. Even then at that decision juncture, there was hope.

I've done a lot of thinking about life and death in my 15 years of experiencing lung cancer.  Indeed, the disease has changed me substantially in many ways. As an engineer, I seek answers. But as a lung cancer survivor, I have to be satisfied to go on with life knowing there will be many unanswered questions. I've had to temper my seeking and embrace the uncertainty of surviving, not knowing the length.  Here is how I did that. 

Stay the course.

Tom

 

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Thanks for the kind words and advice. Seldom in my life , but sometimes , I need to just vent. I am very thandful I can do that here safely without judgement or feeling I have slighted someone. Now that I vented I feel better. It is what it is. Thanks for your encouragement. I am alive today right now. Mom is dad is and my brothers are. Today I am thankful for today. I am thankful for this site and the safe space it gives me. Thanks to all of you. For me the worse part by far is I am not well enough to look after everyone else. I am use to fixing and taking care of things for others. Guess I have to get use not doing as much. Thanks again for letting me vent and being so encouraging. Better today impart cause of you all. Thanks. 

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Thanks for the kind words and advice. Seldom in my life , but sometimes , I need to just vent. I am very thandful I can do that here safely without judgement or feeling I have slighted someone. Now that I vented I feel better. It is what it is. Thanks for your encouragement. I am alive today right now. Mom is dad is and my brothers are. Today I am thankful for today. I am thankful for this site and the safe space it gives me. Thanks to all of you. For me the worse part by far is I am not well enough to look after everyone else. I am use to fixing and taking care of things for others. Guess I have to get use not doing as much. Thanks again for letting me vent and being so encouraging. Better today impart cause of you all. Thanks. 

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I have been having pain in my right are and shoulder. Been telling myself it is just sore. It is not. I know it is not normal pain. I think the cancer has spread to my bones. Was my right arm but today my left shoulder and arm hurt a lot. I am afraid if I go to the family doctor then they will check and not operate on my lung. Not sure they should operate anyway. 

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My goodness you have been through a lot. I'm glad you find solace here.  I can relate to the brother. My brother has found out he had 2 nodules on his right lung. This is just a couple days after I was told about my mass. I'm thankful he found out when it's still a nodule. I like MD Anderson cancer center in Houston Texas website. Clear, concise, easy to find information. It talks about the shoulder and arm pain, which I have also. My pulmonologist and oncologist give to short of an answer for my satisfaction. Medically inclined engineer, investigative personality here. I have to make fully informed decisions. 

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Hi Seventhson, 

Gosh, if you are in pain, I would consider going to the doc and having it checked out.  I'm not sure if it would expedite your treatment plan but you would have some peace of mind.   My back had been hurting me and I was concerned that the bone mets on my spine were not clearing with the targeted therapy.   I had the MRI and it turns out I'm just getting old.    

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My precious clients had already been through all the cancer treatments when I started caring for them in thier home. In Post recovery I added nurture and nutrition and watched for signs and symptoms that needed to be communicated to thier medical team. I met a lot of wonderful people and very compentent and kind med teams. It's so different isn't it when advocating for yourself? I slept in till 11a. Seems it's getting later in the day when I rise. Not my norm at all. One thing I know that doesn't help is, that a few of my well meaning friends and mostly my brother want to start calling at night. I've asked they call during the day. Old habits are hard to break. And I've always been the go to person. I feel just a smidge guilty for shutting my ringer off the last couple of nights. What I'm doing adds to my energy level. But when I have to fast for 3 medical appts in one day my energy is zapped for a couple of days. My medical team said, my 2nd blood draw in 3 weeks, reported a lot better numbers! Whoo hooo! I owe it to my support people's encouragement in a cancer fighting diet regimen. I'm drinking water, aloe, grape, cherry, and straight carrot juice, doing detox, with milk thistle, a liver detox, dandelion root,  and Pau D'Arco tea, and eating only fresh fruits and veggies. All in moderation of course. Except the carrot juice. Drinking juice from 5lbs of carrots every day, and more if I can. I've heard most wonderful testimonials about this. I'm adding a little dairy in the form of yogurt and some cheese, due to most of the secular sights like the  National institute of health and FDA, American Cancer Society,  recommend dairy. This is because of new studies on Walbergs alkaline diet. Walberg originally thought the cells were acid based and reasoned they couldn't live in an akaline environment. He determined this by the outer area of the cancer cell and the fluids surrounding it. Modern equipment allowing to disect the inside of the cell finds the cell is made up of many different ingredients. Therefore doing one thing pushes the remaining things out of the cell making it divided and multiply. Sorry, that my lay terms are very lame. I'm trying to maintain a balance in the plant based food groups. They do say refrain from meat. But if so, then do poultry and fish. I've cut out all meat. Experimenting, I became very fatigued, nauseous and pain level skyrocketed with the meat. And I ate some bread and crackers and became very nauseous and broke out in a sweat. And I don't sweat. So no white flours and processed foods, ie, boxed and processed cheeses. It will say processed on the cheese package. Hard cheeses are recommended. Not by me, but the sites I mentioned. Definitely no sugar. Cancer cells thrive in sugar. I am eating seeds, walnuts and almonds since they are great antioxidants. I was finally able to find black walnuts. I make my own trail mix from the bins at Fresh Thyme market. I had to find Dried fruits with no sugar or sulphur added online though. And I found much cheaper products verses my favorite stores lately. Lots of supplements. Turmeric for pain etc... vitamin D helps immensely with depression. C to ward off potential seasonal illnesses. And others.  Charcoal poultice and charcoal slurrys. I laid the poultice on my lung and shoulder area overnight. The pain was gone the next day. Charcoal pulls toxins and poisons out of your body. You do have to keep it up. Hospitals and ambulances use it and have patients drink it. If you don't already eat this way, it takes some work to make the change and prepare the food. All family members need to pitch in. Since I don't have the energy every day to shop wash juice or prepare my food, My friends, may pick up something for me, and may wash my plant based items, since leaving the peelings on is the best. All I have to do then is juice those items. And when you are not any longer buying boxed meals, and sides like mac and cheese, meal starters, tuna helper etc.. and meat there is no added cost. You just transfer the cost to plant based. My grocery bill is much cheaper then it was eating  Americas best loved foods.  I do love nurturing and am glad to share! Hope this helps you and others. 

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DeeJay,

I applaud your healthy diet.  

Here is an article on plant based diets and lung cancer.  Here is an article on the relationship between sugar and lung cancer. Moreover, here is a Harvard Medical School article on detox. Lastly, here is a short summary on the possibility of changing tissue acidity and alkalinity in the body, Otto Warburg's theory on cancer glycolysis, and a discussion other questionable cancer cures.

Stay the course.

Tom

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Thanks for the kind words. I guess I will have to contact my doctor and set up an appointment. My type of cancer likes to use protein. It prefers protein from sources such as almonds etc . On my PET scan there was only low grade minimum uptake in the nodule itself. Neuroendocrine cancer does not show well on PET scans. I have had pain in my arms last yr similar to this so it is possible something else is going on or I have had this cancer for longer than anyone is aware  . I am concerned for my farther. He has a good day then a bad one. He doesn’t follow simple conversations well. I have noticed this for several mths now. It’s just worse now. Today He went to get up off the sofa and fell and mom hurt her hand helping him up. Have not received results from his brain scan yet but will be surprised if they are clear. Me and my brother talked and think he may get worse quickly. He and mom have been married 63 yrs. I am not sure if mom can take this or not. Anyway that is where that’s at. That  is me right now. I hope you all are doing fine and here’s wishing you the best of news . Love you all . Thanks for all the kind words. 

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Thanks Tom . It is never easy watching someone slip away at any age. But dad is 85 yo and been able to drive and get around so far. So there are more blessings here than hardship. And who knows he may be around awhile yet. Timing could be better with all us sick at the same time . But we work with what we are delt. Thanks for always being there and being honestly supportive. It is appreciated. 

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On 11/20/2018 at 10:27 AM, Mamma Om said:

Hi Seventhson. I had a neuroendocrine carcinoid. Long story, but I had been followed for a few years watching a nodule in my right lower lobe. Lat Jan. it showed it had grown so a biopsy was done (I've previously have two separate breast cancers and thyroid cancer). It was malignant, but was a fibroadenoma, a type of NSCLC. So I had the surgery, which was only just possible because I also have COPD and asthma. When the lobe was sent to pathology a second tumor was found, and originaly diagnosed at SCLC. Plans were made immediately for me to get a IV port put in my chest, and to start chemo and radiation, 3 days in a row, every 3 weeks. But my oncologist had some questions so she sent the pathology to a tumor board which is affiliated with a large cancer center, and they decided it was not SCLC, but the nueroendocerine carcinoid. I understand these are fairly rare. But the good news is that removing it (and the lobe it was in) is all the treatment needed. A couple of months later I had the IV port removed as it never worked properly even for a blood draw, and was forming clots. So I feel OK from the lung surgery, though I have slightly diminished lung capacity. But now they've been watching another nodule in my right middle lobe, and just also discovered a suspicious lump in my left breast. So I am having mammogram and ultrasound on that tomorrow. But I am a survivor of all this! Best wishes with your carcinoid. You should be fine,

Just wanted to check in with you and see how everything is going. Hope all is well. 

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Just an update. Today finally I got a surgery date for removal of right middle lobe . I will keep you posted in real time. I will describe everything and you can ask anything. 

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