mary colleen

I feel very badly about this as well, Randy. Thanks for digging this up for everyone. This one has hit me hard.

Teri - I have no words. Any I could come up with would be inadequate. Hope you can feel all of the arms very tightly around you across the miles. MC

Randy, I forget what time they are?

My husband just finished WBR and did not have steroids. They were available to him. He did have several headaches but managed them with Ibuprofen, or as a last resort (only once or twice) took hydrocodone. The steroid he has always been offered is Decadron. It can be very helpful and it can also cause a lot of agitation and difficulty sleeping, etc. It can also be tough to come off of. (My husband was on it before the brain surgery and during chemo.)We saw none of the side effects you mentioned, just the agitation and insomnia.

Mike, Dr. West would certainly give you a good answer to this on Onctalk, but in the meantime, I'll tell you what I understand as well as I can: It's all about location with nodes. You've probably seen the standard "TNM" staging criterion, in which a given person's combined T (tumor)N (nodes) and M (metastases/spread) characteristics determine stage. Malignant nodes within the same lung as the primary tumor produce an N1 status. Malignant nodes in the mediastinum (middle of the chest),or in certain other locations within the chest, or in the opposite lung produce an N2 or N3 status and thus a higher stage of lung cancer than stage 2. Most lung resection for LC is limited to people staged lower than 3B, though you will sometimes see exceptions. To be Stage 2b (same as my husband was), your nodes would need to be within the same lung as the primary, and not in any of the locations falling under the N2/N3 criteria. Hope this helps - if anyone can do a less clumsy explanation, help us out!

Ernie, I am not a fountain of knowledge (....) but I will research in the morning, for what it's worth (maybe not much:)Still, will share what I can find. Regardless - you're going to be fine. I just know it. Mary Colleen

Hey Carleen, I came on board after you left (I think) , but have read your story in full. God Bless, hope all is well. Thanks for weighing in. Vic has vision loss, and was asked not to drive by the oncologist. After surgery, nothing improved, but he began to drive anyway. I hold my breath daily, hoping that nothing happens. There's nothing I can do to stop the driving, though I try to limit it. So glad to see you post.

I think you should research it. NIH is probably optimal for an opinion. Let us know what you decide.

Ralph, My husband finished 20 sessions WBR himself. The only he was unable to drive was that his tumor took some of his vision. Can I ask why you were told not to drive? When did you finish radiation and how have you recovered since? Mary

Teri, Bill needs to eat...

Yay! Good developments!

Fight this. You must feel stunned and blindsided, but gather yourself and do everything you have been advised to do. This is wrong, and I believe you can win it. I am not in HR, but manage lots of people and work closely with HR folks in all of my personnel actions. I believe, "at will" state or not, that your former employer is on thin ice on this one. Good luck.

Robin - You have friends here, and of course you will have prayers. Please bear in mind that this COULD be scar tissue....and that if it's not, you WILL do what you need to do and manage it. You've already proven that you have strength. Let us know - we'll be thinking of you.

I'll join in, no problem. Good idea. MC

Teri, I am so very sorry that you and Bill are going through this. I do agree with the point that that you must stay ahead of the pain with any medication - it will not be as effective if you wait until there is signficant pain. I know that the temptation not to take the drugs until necessary is strong, but it generally doesn't work well that way. It is not true in all cases that home health care will only come in if treatment has been stopped, though lots of hospice organizations do operate in that manner. There are many non-hospice home health care programs. I would start by asking the Dr's nurse for a referral, and would also check with your local VNA, your insurer (you may be required yo use a specific agency), and the local cancer society. I wish I could be of more help. Stay strong - I know your burden is heavy right now. MC

They will be in my prayers, Connie. I'll also pray that your load on this is lightened. Mary Colleen

Wow - such happy news. 18 months or two years, it doesn't matter - you are moving rapidly into a low risk category with each passing day. Mary Colleen

Aaron, my very most heartfelt congratulations. Tell every kid you deal with that has screwed up what your story is. One or two of them will listen and take it to heart. I'm very happy for you. Mary Colleen

Tanner, you have my heartfelt condolences. I wish peace and solace for you.

You are jumping pretty far ahead, as many of us do under these circumstances. Problem with that is that it can overwhelm you to think of all possiblities and repurcussions at once, when in reality, developments and challenges generally come just one or two at a time, and you will cope with them as they occur. If the doctor at this point does not think this is a met from the original cancer, and the PET is showing no uptake elsewhere, it is entirely possible that you are looking at a new (manageable) Stage 1 or 2 cancer. You've already done that once, and managed ok. Are there ways to replace any potentially lost income? Does your husband have short term disability through work? Remember that the miracles God works may very well be as simple as giving you strength to cope and manage. Take a deep breath and know that you'll deal with needs as they come up. I do, and there's nothing special about me. You can, too. Keep us posted!

Andrea, I've been following your babies. 6/26 or so is pretty good under the circumstances! Rest up! (In the end, it will be the best sleep you've ever lost:))

As previously mentioned, my husband is just about to finish up 20 WBR treatments. He is experiencing all of the normal side effects associated with that therapy. I have also noticed an intermittent dry cough for the last 10 days or so. Yesterday, he mentioned that he has had worse than normal shortness of breath for the last couple of weeks. I am wondering if anyone out there with WBR experience has seen/had side effects like this with the WBR treatment? I know that these symptoms are more logically local to the chest, but thought I'd ask since he is in treatment. He has also been decreasingly physically active over the 4 weeks of WBR - wondering if that could be causing him to have more SOB on mild exertion. Thanks all

Loretta, were they specific about that progression in the abdomen? I assume they meant cancer progression - did they mention the liver or any other organ? Tomorrow you ask them to be ask specific as you need them to be so that you feel you understand exactly what is going on. We'll all be thinking of you.

Thanks to both of you - Lady Salt, I know that you are struggling yourself right now, so especially appreciate your effort to help:) ...and it does help! I'm following your story. Bless you both. Dr. West - I struggle to sign onto your website at times, so directed my question here. I feel very fortunate that you saw it and answered. I can't tell you how appreciated you and your efforts are by so many of us, certainly by me. Long story short - I am proceeding here until August (PET, etc.) as if we have a stage 2 LC with one brain met, a necessary upcoming recovery from surgery and WBR, and some realistic hope after that. Thank you. Mary Colleen

My husband has 4 of 20 WBR session remaining. As can be expected, he is fairly debilitated from the treatments and has the usual symptoms of fatigue, and nausea. We shaved his head today, since his hair remained only in small patches here and there anyway. About 5 weeks ago he had blood work done and it showed elevations of the AST (55) and ALT (111)liver enzymes. We were told to get them re-checked this week, and did. They are slightly less elevated this time - AST was 48, ALT was 98. I called the Onc nurse to get the results, and asked if we need to follow up at this point; she replied that we could either get an ultrasound of the liver now, or wait until his August Onc appointment/PET scan and look at it then. I found it difficult to "read" what we are to do. I asked her if liver mets present with these enzymes elevated, and she said that they often do, but she provided no further guidance on what to do. His bilirubin and alkaline phosphate readings have been normal in each set of bloodwork. Another factor to consider is that he is becoming pretty negative and resistant to the thought of more medical intervention right now - he's kind of angry at his situation, which I understand. I can't determine if he has any liver related symptoms, because he is so sick from radiation anyway. I know that these elevations can result from many things other than mets, but the most common reasons seem to be non-applicable - he doesn't drink alcohol or take any meds right now. I guess I'm asking if anyone who might have had liver mets (or cared for someone with the same) might have presented with this kind of enzyme elevation? Please let me know, and thanks very much.