Living with lung cancer - Introduce yourself & come say hi

The main tumor in lung and the rest of the lymph nodes one in the left arm pit and chest are are all stable and not growing... just that with the Supraclavicular lymph node acting up for now kicks him out of the original clinical study - he was done to the he went through the 1st 12 weeks week 1 was carboplatin, nab-Paclitaxel/abraxane (both chemos) & Pemrolizumab (immunology) and weeks 2 & 3 nab-Paclitaxel/abraxane (chemo) only with flying colors so to speak no adverse reactions to the drugs, very little hair loss (in fact grew back thicker), and only a little neuropathy in his feet reaching only to about the base of ankles in other words one who others would be very envious of or would like to "punch his lights out" did not have to take any of the 3 bottles of extra medication for nausea & vomiting prescribed; no diarrhea, loss of appetite etc. At least he gets to be in what the call Phase II

Yes we had much the same type weather... I had a nice warm water bed and that where I stayed most of the time in front f the bedroom tv, laptop and smartphone by my side... was diagnosed in Oct 2017 in fact we know before he was out of the biopsy of the lung that he had cancer there was PET scan etc and by Dec 15th he started his treatment... think we were in Indy every week or every other week in between Oct-Dec before we started the 12 week trips till nid April - only missing 3 sessions (delays) one we landed in the ditch on Jan 12th it was a rain/sleet weather with probably 2-3" or more on the highways before the snowplows was out - after getting out we headed home - the other 2 was because his immune count was down and they would not do the treatments (the "Do no harm") ... besides that we have made it through the death of his father on June 29th 2018 (he was not making enough red blood cells & having transfusions every 2 weeks) & his mother who died Dec 28th - of Acute Myocardial Infraction, near 100% blockage, sepsis, c-diff, Stage 3 Acute Onset Kidney disease beside her full right side stroke which she had been in nursing home since Dec 3, 2004 I sat with her and watched her die slowly from Dec 19-26 24/7 all but for about 3 hours she was comfort care only as was DNR no advance life sustaining support and if the did surgery to alivate blockage she would of possible not made it or done more damage than good

Just have to hope for the best and he does as well as he did on the first round but with only one chemo he should and it is to be similar to the nab-Paclitaxel/abraxane

How are you coming along @olgamarie ?

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Will introduce myself. I am a senior woman who has recently been diagnosed with a cancerous nodule in my lower right lung. Am schedule for a VATS lobectomy on 3/6/19. Doctors don't think I'll need chemo, or radiation since the nodule is less than one centimeter and a needle biopsy did not indicate spread to lymph nodes
. Anyway, for that I"m grateful, but find myself bouncing from one emotion to another--times of fear, anxiety, relief that the thing was found so soon, etc. I guess that is normal. Am with a great medical team in my city and trust them. I am really interested in what people have experienced with eh VATS surgery--after the procedure during the hospital stay, recovery at home, and then handling the needed CT scans, PET scans, or whatever to make sure the patient is free of cancer. Don't know what else to say, but I appreciate any and all comments. So glad to have found you.

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Hi Alamogal,

As you can read here, I'm a bit ahead of you. I was diagnosed last June with a larger cyst than you (turned out to be 3 cm) in my upper right lobe. I can't help you with VATS as I was lucky enough that my surgeon was one of only 3 in my county that is proficient in the use of the da Vinci robotic system. It's similar to VATS only the surgeon manipulates 4 robotic arms to perform the surgery.

I don't know what you mean by "senior", but I'm 58 and was pretty happy when the doctors kept referring to how young I am! I'm a pretty positive person by nature and never needed any medication to keep up my spirits. I'm also lucky enough to have a great wife. She probably could have used some meds, as I think she worried more than I did!

My doctor was not a fan of staying in the hospital "People get pneumonia in hospitals!", so I had surgery Monday morning and was discharged Wednesday evening. The surgery went fine and I really had minimal discomfort. However, I will tell you that when the hospital nurse asks, "Would you like Percocet or morphine?", the answer is morphine! Part of the reason is that you will initially be in ICU and it seems like they are waking you up every couple of minutes to take your blood pressure again. I don't remember if it was every half hour or every hour, but it seemed like I just got to sleep and then they were waking me up again. I asked for morphine just because I wanted to get back to sleep as quickly as possible.

One other thing: I have a bad knee. In late June I had an X-ray taken and when my primary care physician saw the result, she referred me to an orthopedic surgeon for an MRI and probable surgery. 2 days later I was diagnosed with lung cancer. My PCP and I agreed: 1 medical condition at a time! My wife did rent me one of those chairs that lifts you up to a standing position. We rented it for one month. It was a great help when I first came home. (Quick update on the knee. Still haven't had surgery. 2 1,000 mg tablets of Curcumin or Tumeric have greatly helped reduce the pain.)

I was also told the initial plan was surgery - no chemo or radiation. Didn't work out that way. The cyst turned out to be closer to the cutline than the CT scan indicated. So close, that after surgery the cutline tested positive for the presence of cancer cells. That got me 33 rounds of radiation. Radiation made me tired and that was the major side effect. It irritated my scar tissue a bit, but doubling down on the deep breathing exercises I've been doing since after surgery solved that problem. No damage to the skin whatsoever. I had IMRT, Intensity Modulated Radiation Therapy, which is why I had so few side effects.

Pathology after the surgery also showed the cancer had spread to a lymph node. That got me 4 rounds of chemo. Compared to the people around me, and my friend who is currently finishing up chemo for her breast surgery, I feel that I got chemo-lite. I got Carboplatin and Alimta. I took steroid tablets the day before and after and received steroids the day of each round and never felt any nausea at all. Never lost my hair. I'm a food judge on the side and never noticed any change in my taste buds.

Just had my 3-month follow up PET/CT scan yesterday. No follow up doctor's appointment, so I guess I hope I don't hear from them! Personally, I think the PET scan is a walk in the park. I just sleep during the 1-hour wait and lightly nap during the procedure itself.

Emotionally, I personally find the long-term side effects of chemo and radiation to be the most depressing. If my doctor feels she told me that it would be a year or more before I recovered my stamina, I forgot that. I'm still sleeping 8 to 8 1/2 hours a night which is a lot more than the 7 hours max that I used to. I'm currently training to climb 1,400 stairs as an annual fundraiser for the American Lung Association. The training involves climbing stairs 5 days a week. Those days I sleep 9 hours. I keep telling myself that as side effects go, sleepy is not so bad.

I don't know if this helps you get an idea of what you're in for, but I hope so. The overall message is that the medical community is getting sooo much better at all this stuff all the time. Your experience will be better than even people who had the same procedure as little as 10 years ago.

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Hi Alamogal,

As you can read here, I'm a bit ahead of you. I was diagnosed last June with a larger cyst than you (turned out to be 3 cm) in my upper right lobe. I can't help you with VATS as I was lucky enough that my surgeon was one of only 3 in my county that is proficient in the use of the da Vinci robotic system. It's similar to VATS only the surgeon manipulates 4 robotic arms to perform the surgery.

I don't know what you mean by "senior", but I'm 58 and was pretty happy when the doctors kept referring to how young I am! I'm a pretty positive person by nature and never needed any medication to keep up my spirits. I'm also lucky enough to have a great wife. She probably could have used some meds, as I think she worried more than I did!

My doctor was not a fan of staying in the hospital "People get pneumonia in hospitals!", so I had surgery Monday morning and was discharged Wednesday evening. The surgery went fine and I really had minimal discomfort. However, I will tell you that when the hospital nurse asks, "Would you like Percocet or morphine?", the answer is morphine! Part of the reason is that you will initially be in ICU and it seems like they are waking you up every couple of minutes to take your blood pressure again. I don't remember if it was every half hour or every hour, but it seemed like I just got to sleep and then they were waking me up again. I asked for morphine just because I wanted to get back to sleep as quickly as possible.

One other thing: I have a bad knee. In late June I had an X-ray taken and when my primary care physician saw the result, she referred me to an orthopedic surgeon for an MRI and probable surgery. 2 days later I was diagnosed with lung cancer. My PCP and I agreed: 1 medical condition at a time! My wife did rent me one of those chairs that lifts you up to a standing position. We rented it for one month. It was a great help when I first came home. (Quick update on the knee. Still haven't had surgery. 2 1,000 mg tablets of Curcumin or Tumeric have greatly helped reduce the pain.)

I was also told the initial plan was surgery - no chemo or radiation. Didn't work out that way. The cyst turned out to be closer to the cutline than the CT scan indicated. So close, that after surgery the cutline tested positive for the presence of cancer cells. That got me 33 rounds of radiation. Radiation made me tired and that was the major side effect. It irritated my scar tissue a bit, but doubling down on the deep breathing exercises I've been doing since after surgery solved that problem. No damage to the skin whatsoever. I had IMRT, Intensity Modulated Radiation Therapy, which is why I had so few side effects.

Pathology after the surgery also showed the cancer had spread to a lymph node. That got me 4 rounds of chemo. Compared to the people around me, and my friend who is currently finishing up chemo for her breast surgery, I feel that I got chemo-lite. I got Carboplatin and Alimta. I took steroid tablets the day before and after and received steroids the day of each round and never felt any nausea at all. Never lost my hair. I'm a food judge on the side and never noticed any change in my taste buds.

Just had my 3-month follow up PET/CT scan yesterday. No follow up doctor's appointment, so I guess I hope I don't hear from them! Personally, I think the PET scan is a walk in the park. I just sleep during the 1-hour wait and lightly nap during the procedure itself.

Emotionally, I personally find the long-term side effects of chemo and radiation to be the most depressing. If my doctor feels she told me that it would be a year or more before I recovered my stamina, I forgot that. I'm still sleeping 8 to 8 1/2 hours a night which is a lot more than the 7 hours max that I used to. I'm currently training to climb 1,400 stairs as an annual fundraiser for the American Lung Association. The training involves climbing stairs 5 days a week. Those days I sleep 9 hours. I keep telling myself that as side effects go, sleepy is not so bad.

I don't know if this helps you get an idea of what you're in for, but I hope so. The overall message is that the medical community is getting sooo much better at all this stuff all the time. Your experience will be better than even people who had the same procedure as little as 10 years ago.

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@flusshund- Good morning. I know that the after effects of chemo can be depressing. I kept think that I'd wake up and be as new as a new born puppy. I didn't! It takes a very long time to recover from lung surgery. It took me upwards of a year to feel like myself again, physically anyway. May I ask what part of the country are you from? Most lung cancer patients have CT scans every 3 months for at least the first year. How can it be that you wont have anymore?
As for pain medications I was given some sort of a block in my back. Where in your back depends on the site of the tumor. I had this up until a day before I was to leave the hospital. I was also given anti-nausea meds to offset any stomach uneasiness. This is separate from the IV line and chest tubes.
Have you had your leg surgery?

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Good morning. I'm in southern California, Huntington Beach. When I said no follow up doctor's visit, I meant after this particular PET/CT scan. I was expecting an appointment to discuss whatever they saw. But I guess it will be "no news is good news!"

I already have standing orders for 2 more at the end of May and August. After that I'm guessing they'll go to every 6 months. This doctor did the same thing after my blood clots and PEs. Blood test every 3 months x3, then 6 months. It was after the first 6 month break that my D-dimer level spiked. Then they did an Ultrasound of my legs, a CT scan of my chest, saw a change in the 2 CT scans that were a year apart and it was all downhill from there.

It's my impression that will be the order of things this time as well. Every 3 months, then 6, then once a year. I have a friend who survived colon cancer and he had once a year scans up to 10 years. He just had his last scan in the middle of last year so now he is officially "cancer free"!

Haven't had the knee surgery. My wife has developed an even worse problem with her knee, so she is going to go first. She is getting her MRI next week. After changing physical therapists I found that part of my knee problem was a hip problem. I've learned hip alignment/relaxation methods that have mostly taken care of that problem. And the 2 1000 mg tablets of Curcumin that I'm taking daily have really lowered my knee pain, so that it's now manageable at least.

For this American Lung Association fundraiser, I'm training to climb 1,393 steps in a skyscraper in downtown Los Angeles. I have a 9-week training program I used to prepare. As part of that training I climbed the equivalent of 51 stories yesterday on a StairMaster. Each week gets harder, but I'm hanging in there so far! But I am WAY slower than I used to be. The only reason I think I might be able to do this climb is there is no time limit. In past years I've done the climb in 22 minutes. This year I'll be lucky to finish in an hour! I've been doing this fundraiser for 5 years now. 3 years ago, I was the 6th highest individual fundraiser in the event. I've already agreed to speak at this year's event, whether I'm able to climb or not. We'll see.

Since you're a mentor, is there a group for the spouses of cancer survivors? As I've been telling my wife about this group, she has offered to communicate with anyone that might want to know what it's like to be the spouse of someone diagnosed with cancer. I think her emotional roller coaster ride was even scarier than mine!

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@flusshund Thank you for your kind note. Yes, you have really helped in knowing what to expect and what pain meds to insist upon. In other swhos till plays for my own pleasure. I have had a couple of prior surguries--an-ankle fusion and hysterectomy for which morphine always worked well for me and will insist upon it this time as well. I am 68 years old, a retired psychotherapist, but basically a classically trained pianist ill plays for her own enjoyment. T o hear a doctor call me "young" for surgery at this age was delightful! It is indeed helpful to learn about what all you went through and endured--the follow up chemo and radiation and the merciful lack of awful side effects for you. I am so glad your PET/CT scan was clear. No followup appointments for you.! Hooray!

. My surgeon does the Robotic assisted surgery as well as VATS, and for whatever reason chose VATS for me. I will leave his decision of what surgery to do up to him as he knows far more about this than I. Anyway, it is a blessing that it won't be the old fashioned kind of operation here the ribs are spread apart and recovery is so much more complicated. I heard yesterday, at the seminar on surgery, that we lung patients would be in ICU overnight, encouraged to walk once we are out of anesthesia , vitals are good, etc Then we will be moved to a private room to move on in recovery. I figure from that all was said , I'll be in the hospital for about as long as you and am determined do all I can do to help the recovery process. I want to go HOME ASAP! Also the nurses said not to be the strong silent type during recovery, and if we were in pain or needed anything to let them know. They are there to help us have a minimal amount of pain and stress while we all recover from the surgery. I promised todo the breathing exercises, walk, eat the hospital food and follow their dictates to the utmost to speed there recovery process

Can see where the effects of chemo and radiation could be so emotionally draining! However, I'm glad that it went as well for you (side effects and all) so well. I guess such things have truly come a long ay from what used to be. Don't know about you, but From he two surgeries Had before, I found myself more tired than usual. It will probably be so withe his one as well. I normally sleep around severn hours and expect to sleep more than normally once at home. I recall the previous times when it seemed like there was NOT REST during the hospital stays.

The surgical team will know if they got everything and if somehow the cancer spread to any lymph nodes, or surrounding tissue.If such is the case, then we will move on to the chemo and/or radiation. I hope to avoid that as do my doctors. By this time next week, I may well be in a private room and awaiting removal of the chest tube. Having gone through the morning pre-op tests and the seminar on what to expect was truly helpful. More hospitals ought to have this sort of meeting for patients who will be having surgeries and recovery from surgery for cancer. Also being around other cancer patients kind of gave us a feeing of beingl f a band of brothers and sisters untied in a fight against this disease. I was in total denial about realization that I do indeed have cancer--lung cancer.--called it anything but what it is/was until yesterday.

I thank you again for taking the time to share your experiences with me and appreciate all that you had to say. I feel much better thanks to you and your information. Am so glad that things are going well for you now I hope we can keep in touch and know I will be thinking of and praying for your continued recover. So glad to have found this group!

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Good Morning. One correction, no doctor's visit following this PET/CT scan to discuss results. I have standing orders for 2 more PET/CT scans every 3 months. After that I think we go to every 6 months. Talking with others, that should eventually become every year. I have one friend who is a colon cancer survivor and he just had his last scan after 10 years.

I'll have to share one more story with you. We met with the surgeon before the surgery and he spent some time reviewing what had happened up to that point and why my medical team decided to go forward with the lobectomy. At one point, he turned to my wife and said, "I want to tell you he WILL be depressed after the surgery. For one thing, he's a man and we don't handle these things as well as you women do. For another thing, he's young. And lastly, he's an engineer and they tend to overthink things." At that point I turned to my wife and said, in an overly exaggerated voice, "When have I EVER overthought anything?" and we all had a good laugh.

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Hi @llwortman @burrkay @alicantina1 @merilee @alvinw @shortshot80 @mryzuch @amws @pearlgee @cheris @annette1 @cheris @windwalker @lesbatts @major @bestcare and @sistergoldenhair

I'd like to invite you to the new group dedicated to discussions about lung cancer. It's a space where we can ask questions, share tips and learn from each other. Whether you in treatment or caring for someone with lung cancer, or you're a lung cancer survivor, please join us.

Pull up a chair and tell us a bit about yourself.

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One year history non small cell lung cancer stage 4. Thoracotomy one lung and VATS other lung. Thymus glad removed. Now spine and hip bone positive for cancer. Chemo and radiation not give positive results. Currently start immunotherapy keytruda. Seeking information now of personal experiences using cbd/thc for pain relief/cancer. Oncologist has no opinion as no scientific study to confirm cbd/thc and will not give prescription for medical purchase. All is legal here with prescription but many doctors too sceptical to prescribe. Appreciate any information based on personal experience. Thanks.

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