Curt got a reaction from Roz in Just diagnosed
I’m sorry to hear about your wife’s diagnosis SandyK. You’ve gotten some great guidance and advice from Michelle and Tom. Ignore the numbers on the internet (they are dated), educate yourself and definitely get good genetic testing done. Not all panels are created equal. Targeted therapies for specific types of lung cancer can be more affective. Sometimes this disease requires one hour at a time. Your wife is lucky to have such a great support system. Hang in there.
Curt got a reaction from Roz in Just diagnosed
I was diagnosed a few months ago. I went through a year of scans following a lung nodule that was discovered by accident when I got an abdominal scan for something else. I was lucky to be able to have surgery as a treatment and haven’t required any follow up treatment. Just semi annual scans. I have the unfortunate experience of having had family members with lung cancer diagnosis. Five of my fathers nine siblings have been diagnosed, my father included. That was a while back and the treatments available today were not available to him. I’m glad they exist now but it hurts to know that just a few years could have made such a big difference on his prognosis. Stage IV lung cancer is still a tough disease to fight but it’s not as insurmountable as it was when he was diagnosed.
Curt got a reaction from stewartb40 in Introduction
Hi Becky. I’m really sorry to hear about your husband. I went through much the same with my dad and it is very upsetting. It was the hardest time of my life. The hallucinations could be caused by his medications or they could be due to disease progression.
My dad hallucinated quite a bit and would get pretty agitated with my step mother. She was the one feeding him, giving him his medication and doing a lot of the primary care. He was convinced she was trying to poison him and tried to throw her out a window more than once. I had to intervene to stop him. My brother and I went to visit them, saw the situation and decided we had to stay. My dad was very different with us. He always recognized us and we would be able to calm him down, though he still hallucinated with us. He would ask us where our mom was, they had been divorced for 30 years. He would ask about his sisters who had passed. It was all very upsetting. We struggled a lot with whether keeping him home was the right choice. It was really scary. I don’t think it would have been possible without the three of us there. We never really got much of an answer as to why he hallucinated, disease progression was the best we were told. The hospice nurse had us increase his medication so that he was basically always sedated. I believe it was morphine. He continued to insist on getting up to use the bathroom. Other than that he slept a lot after the meds were increased. He started to eat less and less. I had conversations with my dad early on about how he wanted to be treated when he couldn’t decide for himself anymore. I asked him if he preferred to be lucid or not in any pain. He said he preferred to not be in pain. It was hard because we wanted him to be present with us both mentally and physically as long as possible. We had to honor his wishes and make sure he wasn’t in any discomfort, which meant he was not with us mentally much at all. In the end it was the right choice for all of us, one of many right choices my dad made for us over the years.
Let your doctors know what’s going on You can request a hospice service come to your house. They came twice a week for an hour for my dad and we’re able to provide some clarity with what was happening.
Curt reacted to Tom Galli in CT or PET/CT?
That is a tough question. A PET is useful for staging cancer or determining distant metastasis locations. Today, it is common to have a CT scan in combination with the PET but I'm told the CT portion of the scan is not of diagnostic quality. Its purpose is to locate metastatic areas but it doesn't show shape, size or characteristics.
For lung tumors, my oncologist prefers a CT scan administered with contrast. The contrast media allows the radiologist to discern differences between the tumor and lung tissue that is helpful in sizing and characterizing.
So I think the answer is which test depends on the situation. A PET scan is very helpful in staging but a CT scan is useful in tracking and characterizing.
Stay the course.
Curt reacted to BridgetO in Hiccups
I use an acupressure point to stop hiccups and have found it more effective than others I've tried. It's also supposed to help with nausea and vomiting but I can't vouch for that. I didn't know about it when I had chemo years ago for a prior non-lung cancer. Here's a video from Sloan Kettering that shows the point. Let me know if it works for him
Curt reacted to Diana in Non-small Cell - 4.5 years later small cell - anybody?
I had a really good day yesterday and am feeling pretty good today as well. I got a lot done yesterday as I felt more energetic than I have for about a month or so. Tomorrow is all day chemo again followed by half days both Tuesday and Wednesday. Last round three weeks ago really hit me hard. I was severely dehydrated and had to get IV fluids, my white cell and platelet counts were down so they had to stop radiation until they came up, I had extreme nausea and I was pretty sluggish overall. I am hoping this round goes better. I am drinking lots and lots of water today and will do so for the next few days. I sure don't want to get dehydrated again. I could hardly move! I am getting a CT scan Tuesday to see if the radiation and chemo have shrunk my tumor any so that they can narrow their field for radiation.
Thank you all for your responses, positive thoughts and prayers. I keep all of you in my prayers as well.
Curt reacted to Irwin1 in Good bye MacDonald's and Subway!
Well today is the first day I have been a vegetarian. My main plate was black beans to get my protein. I had a side of broccoli that was awesome. I don't plan on going without any kind of meat every day. But I plan on having a bit of meat on the plate. My wife got me some frozen salmon steaks. I have also been living on white solid tuna. I don't know how much good the diet will do but at least I am doing something.
Curt reacted to Barb1260 in Treatment plans and costs
From what I understand, treatment plans are protocol based depending on the stage and other details of your case. The copayment you have depends on your insurance but if you can’t afford it there are usually ways to get financial help. Look into a social worker through your oncologist office, there is usually one to navigate any issues. The 2 in my docs office said just last week there is a way to find assistance for everything and they have been miracle workers. It all seems daunting at first but it always works out.
Curt reacted to Tom Galli in Introduction
Welcome here. We are a federation of lung cancer survivors or caregivers who love and tend those with lung cancer. Seems likely you've joined the latter. Susan's given you very good information. Most important in her journey, and for many others in this forum, she was diagnosed stage 4 from the outset and is thriving. I was diagnosed stage 3B, had a year's worth of thoracic surgery removing my right lung and plugging leaks, and had 3 recurrences after surgery to my remaining left lung. After more than 15-years, I'm still here.
Almost everyone diagnosed or loving someone diagnosed looks up survival statistics on the internet (we irreverently call this consulting Dr. Google) and the conclusion is frightening. The fright results from two factors: lung cancer is a deadly disease, and lung cancer statistics are not very accurate. This explains the accuracy problem. Fortunately, in the last 5 years, many new treatment methods have been introduced to our community and increases in survival are not reflected in the statistics because they are a 5-year moving average.
Among these non-surgical methods are targeted therapy and immunotherapy (I've linked further information). The biopsy and follow-on lab test of the effusion fluid will give your dad's doctors information to determine suitability for these new methods. Moreover, advances in radiation oncology (IMRT, IGRT, SBRT and Proton Therapy) are a whole other approach to treatment, either alone or in combination with chemotherapy. So, there are means and methods even with your dad's complicated medical history.
So what is ahead? Unfortunately, waiting in the diagnostic phase of this disease is the most difficult to endure. Once the histological (under microscope) pathology determination is made, you'll know two things: is it cancer and if so, what is the type. Knowing the type of lung cancer is critical to designing a treatment plan. While histology yields a type, a further lab test will determine suitability for targeted therapy and or immunotherapy. This further lab report could take a number of weeks. And for most of us, the waiting is unnerving.
We used our waiting time to learn about my disease. This investment proved essential to my treatment outcome for it armed my wife (my caregiver) with relevant information to ask a "terribly preceptive question" about a potential treatment method that saved my life. Here is a summary of lessons learned from my diagnosis and treatment that may be helpful to you and your dad.
You'll have many questions and this is a good place to tee-them-up.
Stay the course.
Curt reacted to Susan Cornett in Introduction
Hi, Aub. Your dad has certainly had his challenges - he's tough! When do you anticipate results? Do you know if the docs are testing for genetic mutations? Both of these drive treatment options. I am a stage iv survivor - almost 3.5 years. Because of the advances in treatment, lung cancer just isn't the death sentence it once was. Depending on the site, surgery may not be an option. I read a statistic that only 17% of diagnosed lung cancer is treated with surgery so the doctor's statement follows that number. Since my diagnosis, I've had two recurrences and both were inoperable due to location. Fortunately other treatment options were available.
We are here so ask us anything. Someone in this community has walked in your dad's shoes and can help you understand the process. We know the waiting part stinks - it feels like it takes so long to get the process moving.
Curt reacted to LouT in PamelaM
Welcome to the forum, sorry you need to be here though. Okay, I recently (May 2nd) had a lobectomy where they removed my lower lobe on my right lung. The nodule they found was NSCLC Squamos and after removal my lymph nodes and surrounding tissues tested negative for any mets, so I was diagnosed as Stage 1A. For me that means I will undergo a CT Scan every 6 months for the next two years (my first scan is 3 months post-surgery and then 6 month intervals afterward) and if after two years there is no recurrence the scans would be done annually. No chemo or radiation therapy would be required and they give me a high prognosis (probability of survival) because with Stage 1a cases the disease has been found early and there is no evidence of cells spreading anywhere else at this time.
So, please relax, wait for your final test results and know that once your test results are confirmed you will likely have follow-ups similar to what I am doing. Don't bother going to the web, most of the statistics are out of date with the advances that have been made with Lung Cancer treatment. Trust in your doctor and learn what you can from this forum. There are others with very similar experiences.
Pamela, you've come to a great place for information, shared experience and fellowship. Let us know if you have any other questions.
Curt reacted to Irwin1 in Saw My Thoracic Surgeon Today
Again my guardian angel is here to the rescue. Us both being in the medical field I came here because I was emotionally coding.. Before and while this happened we had out of town guests living with us all spring. So with them being present I wasn't allowed to cave emotionally. They left last week and my wife has gone to work leaving me alone for 8 hours a day to cope with my new reality.
Then I get your reply and it is just perfect. Sometimes I wonder if you are a professional psychologist who knows how to deal with cancer patients. But of course this is rediculous to.think because a trained professional psychologist would not be as good at giving advice like you 😇
Curt reacted to mehrensh in local contact(s)
I don't know if this the right place for this, but I would appreciate help/advice in finding a person or people in who live near me to talk over a cup of coffee (and maybe a muffin!). I would prefer not to travel to far. Any hints on how to go about this would be greatly appreciated. Thanks
Curt reacted to Steff in local contact(s)
I don't have an answer for you regarding an in person meeting, but LUNGevity offers a Lifeline Support program that can match you with a peer who may have a similar diagnosis and/or have gone through similar issues. Most of the time, people speak over the phone or emails. But they may have someone in your area that can get together for coffee. Here is the website:
Curt reacted to Tom Galli in Gained 5 pounds in 5 days?
You are right about the weigh-in and report routine. During my chemo, my weight varied a lot; mostly down but large upswings when my wife could stuff me with ice cream. When variance was noted, I'd take a seat while the chemo nurse consulted with the on-call oncologist to determine suitability for treatment.
It is hard not to overthink; this admission comes from the one who overthinks everything always. And of course, my overthinking always leads to over reaction that leads to panic and et cetera. So I'm guilty but must admit that my overthinking never led to thoughts that eliminated my weight variance. Today, I overthink when planning vacations and this is a much better use of my time.
Stay the course.
Curt reacted to Isabelle49 in Gained 5 pounds in 5 days?
Should weigh on same scale, same time of day, wearing same weight of clothing each day. Scale should be on a hard floor and patient bladder empty. With the weight gain, I would look for foot/ankle/lower leg swelling, abdominal swelling - these should be reported to the doc. One other thing, a scale is a machine and machines are not always right. Hoping all is well.
Curt got a reaction from Susan Cornett in Introduction
Hi Martin. Welcome to this forum. I’m sorry to hear of your wife’s diagnosis. Your post and faith come across strong and optimistic. Two great weapons in this fight. I don’t have any specific experience with your questions but I hope you find some answers here and you both continue the fight.
Curt got a reaction from ColleenRae in Mom Just Diagnosed
Hi Kiera. Welcome. I’m sorry to hear of your moms diagnosis. Steff has provided some great advice and encouragement. She’s right regarding current treatments and prognosis. I can tell from your post you are ready to confront whatever is required for your mom. Your mom is lucky to have support like that.
I can relate regarding differing opinions on treatments. It can be confusing and upsetting for all involved. The only advice I can give is to focus on what your mom wants. Her feelings and wishes are the most important.
Hang in there. The initial part after diagnosis, before a treatment plan is in place, holds a lot of uncertainty and stress. That all consuming feeling will start to pass as a treatment plan is settled on. I’m the meantime plan some things with your mom that don’t have anything to do with her diagnosis. Don’t push life aside because of it. Enjoy the moments in between doctor visits and treatments. Whether your mom survives five years or fifty you won’t regret those times.
Curt got a reaction from ColleenRae in Introduction - Isabelle49
I can speak from both sides of the equation. My father was diagnosed with a soft tissue sarcoma when I was around 12. He didn’t tell me until after he had his leg amputated, he knew for about a year. I was pretty upset he didn’t. I told him never to do that again. Fast forward 30 years and he was diagnosed with a stage IV LC. He called me on the way home from the doctor to let me know. He said he remembered how upset I was when he didn’t tell me when I was 12. I was glad he did tell me. It was important to me to be able to help him in any way I could.
Now I was just diagnosed with Stage 1 LC 8 weeks ago. I have a 10, 8 and 6 year old. We chose to tell them that I had something in my lung that needed to be removed but not use the word cancer. They haven’t asked for specifics. I struggled a lot with telling friends, extended family, employees, customers and people I interact with through work. I’ve found that it does help to share what you are going through in the appropriate moment. If you choose to share it I’d practice the first few times on close family or friends. I had to get through a few before I was able to do it without getting upset. There is definitely something therapeutic with saying it out loud for me.
Curt got a reaction from LouT in Oops! Newbie here!!
Hi Diana. Sorry to hear about your recurrence. I don’t have any personal experiences but I have heard of NSCLC turning into SCLC. I can imagine your frustration with discovering it so close to the five year milestone. I’m sure it feels like the finish line was just moved on you. Treatments have improved considerably in the past 4.5 years. You’ve beat it once and you can do it again. Hang in there.