Living with lung cancer - Introduce yourself & come say hi

Welcome to the Lung Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with lung cancer or caring for someone with lung cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentors and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself?

@merpreb

@olgamarie-Good morning. How are you doing? I haven't heard from you in a while. How are you feeling? Where are you in therapy?

Jump to this post

Hi Merry. I did go to the ER for 7 hours! They did a chest X-Ray and chest CT and EKG but could not come up with a good reason for the pain. They tried their best to keep me isolated. Finished my second round of Chemo on Friday and still not feeling well, bloating, nausea, coughing. They started me on the Granix shots. I have gotten two and need 3 more. Not sure if that is adding to the unwell feeling. Doctor has me set up for another PET scan on 3-8. If there is no improvement I am not sure what he will advise. He gave me the impression there is no protocol fir this. I would probably see if I could get in to see Wakelee at Stanford again. I see that MD Anderson has partnered with Scripps down by San Diego. My daughter lives down there but do I want to travel, start all over and inconvenience them? Will wait to see what the PET shows. Thanks for checking on me.

REPLY

Good Day, everyone. I just found this group. My parents were big fans of the Mayo Clinic. My wife is from Minnesota and her parents have been to the clinic more than once, so I'm a fan, too!

At the young age of 58, I was diagnosed with Stage 2b non-smoker's lung cancer in June 2018. The CT scan showed a 2.7 cm cyst in my upper right lobe. Had surgery to remove the lobe. Pathology showed the cyst was 3.0 cm, hence 2b instead of 2a. It also showed the cancer had spread to the nearest lymph node. It also showed the cyst was closer to the cut line than the CT scan had indicated. When they stained that line, it showed the presence of cancer cells. That bought me 33 radiation treatments. Acting out of an abundance of caution, I also got 4 rounds of chemotherapy.

I did go to the City of Hope for a second opinion. My treatments were already underway by then, but they said they would have recommended everything my doctor had done. I do believe I am lucky that my Oncologist is very good. He's one of these young overachievers who has certifications in Hematology, Oncology and Internal Medicine. RN friends of mine who have worked with him say that he is the smartest doctor they have ever met and, if they or anyone in their family ever needed an Oncologist, they would see him.

Some things went smoothly. Some not so much. The surgery was performed with the latest model Da Vinci robot and was a breeze. I was discharged from the hospital 1.5 days after the surgery. My doctor did have me get a port, which I was very happy to do. (A friend's veins were pretty much destroyed by getting her chemo directly in her arm.) My chemo was concurrent with my radiation, which caused the problem. My Neutrophil count was down to 283 18 days after the first round! We stopped radiation and delayed the 2nd round for a week. Everything came back up. Continued to struggle with very low Neutrophil counts after each round of chemo, but didn't have to delay any more chemo treatments. DID halt radiation for another week which did the trick.

I took all the low Neutrophil precautions, even wearing a mask at work. It was close to Halloween, so I told people I was preparing my costume. Some co-workers knew what it really was. Never got sick. Not even the trace of a fever. After it was all done, my doctor speculated that I might have a rare condition where the Neutrophil cells are actually there, just not mixing around in the blood flow. They're more like the wallflowers at a high school dance that just stick near to the wall and don't move out to the middle of the room.

Tomorrow I have my first 3-month CT/PET scan to verify that I am still cancer free. The only "criticism" I have of my doctor is that I wish he had talked more about this lack of physical stamina that I still experience. I'm still sleeping 8 to 8 1/2 hours a night, which is a good hour to an hour and a half more than what used to be fine for me.

I should mention 2 more things. One, after a friend died of lung cancer 5 years ago, I've been raising money for the American Lung Association every year. I am the team captain of "The Lung and the Breathless", a team of people who climb the 1,400 steps of a local skyscraper to raise money. So it's ironic that I contracted lung cancer! Oh yea, at the time I and my siblings knew of no cancer anywhere in our family history. Since then we've learned that our mother's father died of side effects of colon cancer.

The other irony is how we caught this so early. I am the luckiest person to ever be diagnosed with multiple blood clots in both legs and multiple bilateral pulmonary embolisms. Lucky first because my co-worker and friend died of a pulmonary embolism 8 months before my diagnosis. Lucky second because my Hematologist had just switched to 6-month blood testing when the marker he was watching spiked. That led to the biopsy that revealed lung cancer.

As the Grateful Dead say, "What a long strange trip it's been!" Glad to meet everyone. If you have any questions about my experience, or if I can help you with your experience in any way, just let me know.

P.S. I AM training for this year's stair climb. I'm just starting week 4 in the 9-week program. I don't know if my body will let me finish, but I'm trying! I will be a speaker at this year's event, even if my body isn't up for the climb. I'm hopeful because there is no time limit. As long as I finish the climb the same day that I start, I win!

REPLY
@margot69

Hi Merry. I did go to the ER for 7 hours! They did a chest X-Ray and chest CT and EKG but could not come up with a good reason for the pain. They tried their best to keep me isolated. Finished my second round of Chemo on Friday and still not feeling well, bloating, nausea, coughing. They started me on the Granix shots. I have gotten two and need 3 more. Not sure if that is adding to the unwell feeling. Doctor has me set up for another PET scan on 3-8. If there is no improvement I am not sure what he will advise. He gave me the impression there is no protocol fir this. I would probably see if I could get in to see Wakelee at Stanford again. I see that MD Anderson has partnered with Scripps down by San Diego. My daughter lives down there but do I want to travel, start all over and inconvenience them? Will wait to see what the PET shows. Thanks for checking on me.

Jump to this post

@margot69– Hi!! Isn't the ER a joy? I hate going there but sometimes it's the only alternative. What does your Oncologist say about your chest pain? Is it the cancer? I'm sorry that you aren't feeling better. Chemo is pretty grueling, tiring and chancy. But you are hanging in there and I'm glad! The Granix helps keep your white blood cells from dipping to low.
I found this about the side effects that you might incur from it; https://www.rxlist.com/granix-side-effects-drug-center.htm

I know that you don't want to travel, and that it's even more difficult when you feel ill, but please reconsider this. You have cancer Margot- you can inconvenience your daughter for it. I'm sure that this feeling is only on your side. I don't think that it would be starting all over. Your present dr. will transfer your info and the new dr will go from there. Isn't it worth it? Of course you can chose not to do anything, you do have options. But I know that you don't want to do that, well at least I'm hoping that you don't. Please let me know the results of the PET scan!

REPLY
@flusshund

Good Day, everyone. I just found this group. My parents were big fans of the Mayo Clinic. My wife is from Minnesota and her parents have been to the clinic more than once, so I'm a fan, too!

At the young age of 58, I was diagnosed with Stage 2b non-smoker's lung cancer in June 2018. The CT scan showed a 2.7 cm cyst in my upper right lobe. Had surgery to remove the lobe. Pathology showed the cyst was 3.0 cm, hence 2b instead of 2a. It also showed the cancer had spread to the nearest lymph node. It also showed the cyst was closer to the cut line than the CT scan had indicated. When they stained that line, it showed the presence of cancer cells. That bought me 33 radiation treatments. Acting out of an abundance of caution, I also got 4 rounds of chemotherapy.

I did go to the City of Hope for a second opinion. My treatments were already underway by then, but they said they would have recommended everything my doctor had done. I do believe I am lucky that my Oncologist is very good. He's one of these young overachievers who has certifications in Hematology, Oncology and Internal Medicine. RN friends of mine who have worked with him say that he is the smartest doctor they have ever met and, if they or anyone in their family ever needed an Oncologist, they would see him.

Some things went smoothly. Some not so much. The surgery was performed with the latest model Da Vinci robot and was a breeze. I was discharged from the hospital 1.5 days after the surgery. My doctor did have me get a port, which I was very happy to do. (A friend's veins were pretty much destroyed by getting her chemo directly in her arm.) My chemo was concurrent with my radiation, which caused the problem. My Neutrophil count was down to 283 18 days after the first round! We stopped radiation and delayed the 2nd round for a week. Everything came back up. Continued to struggle with very low Neutrophil counts after each round of chemo, but didn't have to delay any more chemo treatments. DID halt radiation for another week which did the trick.

I took all the low Neutrophil precautions, even wearing a mask at work. It was close to Halloween, so I told people I was preparing my costume. Some co-workers knew what it really was. Never got sick. Not even the trace of a fever. After it was all done, my doctor speculated that I might have a rare condition where the Neutrophil cells are actually there, just not mixing around in the blood flow. They're more like the wallflowers at a high school dance that just stick near to the wall and don't move out to the middle of the room.

Tomorrow I have my first 3-month CT/PET scan to verify that I am still cancer free. The only "criticism" I have of my doctor is that I wish he had talked more about this lack of physical stamina that I still experience. I'm still sleeping 8 to 8 1/2 hours a night, which is a good hour to an hour and a half more than what used to be fine for me.

I should mention 2 more things. One, after a friend died of lung cancer 5 years ago, I've been raising money for the American Lung Association every year. I am the team captain of "The Lung and the Breathless", a team of people who climb the 1,400 steps of a local skyscraper to raise money. So it's ironic that I contracted lung cancer! Oh yea, at the time I and my siblings knew of no cancer anywhere in our family history. Since then we've learned that our mother's father died of side effects of colon cancer.

The other irony is how we caught this so early. I am the luckiest person to ever be diagnosed with multiple blood clots in both legs and multiple bilateral pulmonary embolisms. Lucky first because my co-worker and friend died of a pulmonary embolism 8 months before my diagnosis. Lucky second because my Hematologist had just switched to 6-month blood testing when the marker he was watching spiked. That led to the biopsy that revealed lung cancer.

As the Grateful Dead say, "What a long strange trip it's been!" Glad to meet everyone. If you have any questions about my experience, or if I can help you with your experience in any way, just let me know.

P.S. I AM training for this year's stair climb. I'm just starting week 4 in the 9-week program. I don't know if my body will let me finish, but I'm trying! I will be a speaker at this year's event, even if my body isn't up for the climb. I'm hopeful because there is no time limit. As long as I finish the climb the same day that I start, I win!

Jump to this post

@flusshund– Good afternoon and welcome to Mayo Connect. I am a lung cancer volunteer mentor here at Connect. I have had lung cancer on and off for 22 years. I have what is called multifocal adenocarcinoma of the lung. What cell type of cancer do you have? I sympathize with your fatigue. I have had chemo and it's hard to describe to anyone what it feels like. Did your doctor not say anything about your low stamina prior to your lung cancer journey? You are recovering from a lot of chemicals and surgery and radiation. It can take upwards of a year, maybe even a bit more, to feel like yourself again. Rest and sleep when you need it. It sounds as if you have a lot of plans, that's just terrific.
A lot of non-smokers get different types of lung cancers.
Here is my blog, about my lung journey if you care to read it. https://my20yearscancer.com/
How is your breathing? Have you been assigned a pulmonologist?

REPLY
@colleenyoung

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.

Jump to this post

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.

REPLY

@a. I'm glad that you found Connect too!lamogal635- Thank you. Your moods will be all over the place for sometime, but I'm glad that you can still work, if you are up to it. Why were you put on effexor? Has it always made you feel lethargic?

REPLY
@merpreb

@flusshund– Good afternoon and welcome to Mayo Connect. I am a lung cancer volunteer mentor here at Connect. I have had lung cancer on and off for 22 years. I have what is called multifocal adenocarcinoma of the lung. What cell type of cancer do you have? I sympathize with your fatigue. I have had chemo and it's hard to describe to anyone what it feels like. Did your doctor not say anything about your low stamina prior to your lung cancer journey? You are recovering from a lot of chemicals and surgery and radiation. It can take upwards of a year, maybe even a bit more, to feel like yourself again. Rest and sleep when you need it. It sounds as if you have a lot of plans, that's just terrific.
A lot of non-smokers get different types of lung cancers.
Here is my blog, about my lung journey if you care to read it. https://my20yearscancer.com/
How is your breathing? Have you been assigned a pulmonologist?

Jump to this post

Greetings, Merry. Should have mentioned the type. Lung Adenocarcinoma, Stage IIB. PD-L1 strong expression. But . . . Exon 19 EGFR mutated. My doctor did talk about fatigue during treatment, but didn't mention the lingering effects. Or maybe they thought that was implied.
A Pulmonologist was part of the team when I first had my pulmonary embolisms. When my more recent blood level spike and PET scan indicated a biopsy, I made an appointment with my Pulmonologist. He said he'd get back to me in 2 weeks after he had consulted with my surgeon and Oncologist. 3 days later he called and said "Get it done.", so I did. My hospital has a Tumor Board that meets every Friday at lunch and discusses gray area cases like mine originally was. My Oncologist, Pulmonologist and Surgeon are all on that board. My Oncologist is actually the head of that board as well as the Head of Oncology at that hospital. Lung cancer is his specialty.

REPLY

@flusshund please meet @alamogal635– @@alamogal635 has surgery for lung cancer next week.

REPLY
@merpreb

@a. I'm glad that you found Connect too!lamogal635- Thank you. Your moods will be all over the place for sometime, but I'm glad that you can still work, if you are up to it. Why were you put on effexor? Has it always made you feel lethargic?

Jump to this post

@merpreb I am on Fluoxetine ( Prozac) not Effexor. I figured the odds would be wild. Thank you.

REPLY

@alamogal635– I felt exactly like you did when I was put on it years ago.

Liked by alamogal635

REPLY
@reibur1951

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 ?

Jump to this post

Friend has started his 2nd clinical study and had his first treatment of Chemo (Docetaxel) combined with the Pemnrolizumab (Keruda) (which he has been on since Dec. 2017 every three weeks) plus a dose of steroid to ward off and of the side effects

The 1st clinical study was: Pemnrolizumab (Keruda))/Carboplatin/Abraxane week1 and then Abraxane week 2 &3 for total of 12 weeks Dec-Apr and then in April was only the Pemnrolizumab (Keruda) every 3 weeks – like said he had little no side effects – – thus far he has no side effects to the new chemo hoping he will do same as he did on the 12 week regimen not sure how long this will continue – will be depending upon if any side effects the drug as is a little more wicked than the other 2 and will be taken off if it causes other complications.

The Supraclavicular lymph node shows measures partially necrotic ( death of cells) 4.6 by 6.1 cm; there are 3 others 1 morphologically 1.1 cm.; 1 partially necrotic ( death of cells) at 1.6 cm. and the other necrotic at 1.1 cm He had his biopsy of the Supraclavicular lymph node for the clincial study its basiccally for their study purposes unless it turns something more up that what is now known
on Thursday 21st and goes back for treatment on March 18th and scans on April 4th and treatment again on April 8th.

Options if this does not work or show progress is first radiation, and then possibly surgery if the radiation does not work.

The main tumor/mass and all the chest lymph nodes and the Left Axillary lymph nodes have shrank not changed and have remained stable. the upper lung mass has been described as "fungating" in the CT scans

He is Stage IVB NSCLC into his second year being diagnosed in Oct 2017

Its been a very rough 2 years on all of us his father died Jun 28 2018 after a near 2+ year battle onf not making read blood cells, & his mother on Dec. 26th 2018 after being in nursing home for 14 years from full right side stroke – he has a massive Acute MI near 100% blockage with many other health issues was "comfort care" for 8 days before dying I stayed with her 24/7 tho he never has said I know their deaths has taken a toll on him.

There has been never given a time frame of survival given only what I have researched…. he is determine and rides his bicycle almost every day 10+ miles one way to a country store to have coffee be with local people.

He has not had any colds, flu etc. which is a plus… God is good and he will take care and provide what is needed…

REPLY
@alamogal635

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.

Jump to this post

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.

REPLY
@flusshund

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.

Jump to this post

@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!

REPLY
@flusshund

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.

Jump to this post

@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?

REPLY
@merpreb

@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?

Jump to this post

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!

REPLY
Please login or register to post a reply.