mary colleen

Randy, The Cancer Consultants article seems to erroneously reverse the findings from the actual study in regard to survival. When you go to the original article of the study results (in the Journal of Thoracic Oncology),it basically says the opposite - that patients with the higher SUVs on PET have lower survival...and that patients with the lower SUV results have better survival. This would be more consistent with everything I have read in the past on this topic. I think the Cancer Consultants piece accidentally reversed the language on the survival findings. This is the excerpt from the original article in the Journal of Thoracic Oncology: The 5-year estimates of recurrence rates for patients with low and high SUVmax were 14% and 37%, respectively (p = 0.002), with 5-year overall survivals of 74% and 53%, respectively (p = 0.006). Am I reading this wrong? MC

I have been unable to get Aaron and Julia off of my mind for the last couple of days, and found myself browsing some of Aaron's posts. We've been very fortunate to have shared in his insight, moments of good news, and moments of questioning. While we knew Aaron, he was admitted to the bar, was married, and struggled mightily with a cancer that clearly wanted to win. We also had the pleasure of "meeting" Julia and seeing a very young woman cope admirably and with great compassion with a landscape that must have been stunningly painful. Thank you, Aaron and Julia for letting us into your lives. My heart is truly heavy over this. Mary Colleen

Julia, May Aaron now live joyously, painlessly, and without any further fear in the light of God. I will never forget either of you. All of us here love you and admire you. I'm so sorry. Love, Mary Colleen

I'm sorry, Hawkeye. You've had a terrible loss. You hang in there and know that you have friends here. Mary Colleen

Hi Bill, A "PET" test is another type of scan designed to help determine if there is a malignancy present in the body. A tracer dye containing glucose, usually one called "FDG", is injected and allowed to circulate in your body for an hour or so, and then the scan takes place. The expectation is that any area with malignant (cancerous) cells will show increased uptake of that tracer dye, resulting in a raised uptake value (often referred to as SUV) for any areas with cancerous cells. In pictures from a PET scan, the areas with increased uptake look as if they are lit up. There are some issues with PET scans - for example, the entire brain normally has increased tracer (glucose) uptake in comparison to other parts of the body, so it can be hard to use a PET scan for the brain. Same sometimes applies to areas with inflammation for various reasons. A PET scan is often done in these scenarios: 1. When lung cancer has been diagnosed, a PET may be used to look at the rest of the body for any spread before deciding if the patient is a candidate for surgery to the lung. 2. When a routine chest x-ray or CT scan shows "something new" in the anatomy of a cancer patient, a PET may be used to help determine if it is malignant. 3. Some doctors use PET scans routinely to monitor cancer patients after treatment. Hoped this helped to answer your question! Mary

I'm very, very happy for you too, and heck - why not go with the extended surveillance approach. I'm glad he wants to. Mary Colleen

Pup, Mu husband had "real" surgery last April to remove a brain met. Surprisingly to me, it was no big deal, really. Easier than chemo, easier than WBR, much easier than chest surgery. He was out and home 48 hours after the surgery, and pretty darn active within 5 days. He agrees, as scared as we both were, that it was the easiest part of this whole ordeal. Please stay in touch with us and let us help you remember that we are with you, and want to know how you are doing! Mary Colleen

Teri - I can't share anything on that, having no experience. Just remember that you don't ever have to take it off if you don't want to. Love and a big hug, MC

My husband is always cold. He even sits on the sofa sometimes with a blanket wrapped around his head and whole body. I thought it would go away when chemo ended, but it never has. Of course, it doesn't help that it's going to be -20 windchill tonight in Nebraska.....

Yeah Pup - a big day done, a big step taken care of! You deserve to be exhausted. Sleep well tonight, we're all very happy to see you back and finished with this task today. MC

Well, how frustrating - we've been there, so understand. But I'm glad you got that far - you are ahead of where you were last night. How far away is UMD, and how will you get there? Do you have someone who can go with you? Sorry to be so inquisitive, but I would hate to think of you going on your own. MC

Pup. That's right, if they don't call you just call your Onc's office and tell them you need assistance in contacting them. They may even do it for you - ours usually does. Don't let this small aspect worry you too much. MC

Vernon, First, I will tell you that many, many, many people on this board have had lengthy survival. I have never seen a statistic that stated that only 1 in 20 survive a year for non-small cell lung cancer....that is a 5% one-year survival rate, and is way, way off. The WORST commonly quoted stat I see is 5 year survival at 15%-20%, which is based on old data and a mix of factors that do not effect everyone. (I am assuming you do not have small-cell LC, since you had surgery. Surgery is not usually used in small cell lung cancer.) As a matter of fact, if you had surgery, I would guess that you would be an earlier stage of LC (3A or lower?), in which case those statistics would not apply to you at all! Many folks are diagnosed at a higher stage and are not able to have surgery, because localized surgery is not necessarily effective at higher stages. In short, if you had surgery, you are fortunate. Surgery is considered to be part of a potentially curative course of treatment. It is usually followed by chemo, sometimes radiation, depending on circumstances. All tough for many, but part of the intent to cure that surgery is part of. It would be great for us to know more about your situation so that we can answer you more knowledgeably. You say this is a secondary cancer - do you mean that it has spread to your lungs from the colon, or do you mean that it is a second primary...that you had colon cancer, and now have lung cancer? They are 2 different situations. If a primary lung cancer, do you know what kind - adenocarcinoma, squamous cell carcinoma, BAC, etc? Since you had surgery, you probably have a pathology report that tells you the type and that tells you if it was detected in any lymph nodes. Those facts are important in your staging and treatment. I assume you don't have metastatic spread to the bones, liver, brain, etc., since you had surgery. That's a good prognostic factor. So - it's important to know exactly what you have (type, stage) when you look at stats, and even then it's important to know the limitations of statistics. You have already been through a lot - remember that you can be cured, and that you need not burden yourself with negative, incorrect statistics. Welcome to the group, too! Mary

My husband was stage 2b at diagnosis, had a lobectomy, and had chemo...no radiation. I guess my take is that once the actual primary mass has been removed, there is nothing to radiate. Chemo is then the systemic approach. Mary

Hang in there, Pup - I'm sure this is going to be a bit of along weekend for you. Be cautious in what you do, and maybe call the on call doc if you experience any more severe symptoms. Please let us know right away when you hear. I'll be praying for you. Mary Colleen

Val, My Mom died 2 and a half years ago, and I still miss her acutely. As a matter of fact, the missing has taken on a new and sharper nature in the last few months. I am very open about it with my close friends, and I actually went kind of weepy and "black" during Christmas over it. The concept that anyone would try to limit this natural and appropriate event occurring within me is baffling. To me, it would be like someone telling me to just get over being left-handed. It is what it is, and I just don't care what anyone else thinks about it. Mary Colleen

Oh, I am so happy for you Bucky! God Bless,and PLEASE, please....behave while on parole. Love, Mary Colleen

Don point is a good one. Cyber knife is a good option, if it fits your case. Another thing I should tell you: I didn't mean to diminish your willingness to do WBR, if that is appropriate for you. It can be a very hard treatment for many, but studies do generally indicate that it greatly reduces your chances of a having a brain recurrence in the future. Mary

Jennifer, My husband developed a single large brain met last April. It was surgically removed, then he had a month of whole brain radiation treatments. The surgery was a relative breeze - really, no major recovery issues at all. Recovery from the radiation has been another matter - it's been pretty difficult. He struggled for about 12 weeks after the radiation ended with neurological side effects like severe fatigue and loss of appetite. For the 3 months after that, he has been much better, but still has limited energy. The benefits of having brain mets removed (if feasible) are: 1.) Any neuro symptoms are usually relieved pretty quickly. 2.) The majority of studies that look at long term survivors of brain mets seem to indicate that surgical resection is a common factor in many of those cases. Good luck, hope this helped a little.

You indicate in your initial post that you have chest pain. I would tell them that when you go in. I would also tell them that you are coughing blood. In addition, if you get to a hospital, ask for a social worker to talk to. They may be able to assist you with some of this.

My husband goes in every 3 months, and has a Chest XR at one appointment and a CT at the next....so he has each every six months. He has a brain MRI every 3 months since he had a brain met, and now has other brain related issues that need tracking.

Randy, I have not heard from him. That same thought ocurred to me just yesterday. I hope all was well when he PM'd you. MC

Hoping Liz is well, will pray for her until we hear.

I'm sorry that your lovely Mom is failing. In-home hospice seems to be the usual course in my area. I've seen it in action twice, and feel that I can recommend it. Is ti an option? My suggestion as far as your aunts: don't worry about what they should or should not want, say, or do; if your Mom would want them to be able to see her, invite them. My thoughts will be with you. Mary Colleen

By the way, Don, it's the Aquaphor Healing Ointment - there's more than one product in the line. MC