CancerCompass message board discussion started by GeorgesGirl on 3/1/2008 http://www.cancercompass.com/message-board/message/all,21546,0.htm Tue, 07 Oct 2008 00:00:00 GMT Tue, 07 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello Everyone,I wanted to give an update on my dad and also ask for some much needed advice. Daddy was diagnosed 12/2007 with EC.CT Scan showed primary tumor in esp., a mass of lymph nodes at the base of the trachea, and a "shadow" on the R lung. The esop., nodes and a solid mass in the R lung lit on the PET scan given a few days later. We then took these results and met with a dr. specializing in gastric/lung cancers. EUS and broncoscopy done 1st week in January 2008. The surgical onc. said that the lymph nodes were cancerous and he could see the path that the cancer took to the lung so it was not necessary to biopsy the mass. We were told the EC had mets to the lung-T4 N1 M1b. He has now had 4 treatments of cisplatin and irinotecan. He was so sick from the first treatment that he was hospitalized for dehydration and diarrhea. His dose was cut in half after that.  A new CT was performed 2/21 to determine if he was responding to chemo. Unfortunately, they could not locate the first CT so they had nothing to compare with the new one. The only thing she could tell us that day was that there was nothing new on the scan, the mass was still in the lung, and it didn't appear to have grown. The doctor called and said she had called in a thoriatic expert to examine the CTs. We were given wonderful news-the place in the esop. shrank 1 cm (is cm right?) and it now seemed that the mass in the lung was some type of inflammation and may not be cancer after all. However, she was taking it to the tumor board the following day to have it evaluated. Naturally, we felt this was an answered prayer and we were thrilled! The next day the dr. called and said they believed the mass to be some type of inflammation and she wanted to change daddy's next chemo appt. so that we could meet with a radiation oncologist on the same day. (Daddy is still not able to swallow at all). We will go this coming Tuesday to meet with him.This brings me to the part where we need some advice. 1-I want to know without a shadow of a doubt that the lung is not cancer. In Dec. they believed it was cancer, and now they don't. I don't know if they are planning a biopsy or not. 2-If it is not cancer then how does this change his prognosis? I am guessing that he would be stage III and the cluster of nodes would be a local mets.? Is she still saying palliative care or is she now going for a cure? If palliative then is radiation the best option to shrink the tumor so that he can swallow? Here is my concern-From what I have read, radiation seems to very tough. Chemo has been pretty tough already. If he still won't be a candidate for surgery then why not do photo dynamic therapy or the alcohol injection? Neither of these have been mentioned by the dr, I have researched them on my own. Has anyone opted for one of these rather than radiation to open the esophagus? It seems that she has already decided that radiation with chemo is the next step, but I want to be sure it's the right one. My parents are relying on me to be the "informed" one. I am trying to do as much research as possible before Tues. so that we will know what questions to ask.Please, if you have any information that might be helpful for us I'd love to hear from you. I have said before that this board is a lifeline- and it truly has been. I feel like I have made so many friends even though I have never meet you. I pray for you all each time I pray for my dad. Thanks for all your help!  GeorgesGirl Sat, 01 Mar 2008 00:00:00 GMT As I read the first part of your message I felt like I was reading my dad's story. He was Dx in Nov. 07 (new he had cancer in sept but couldn't find the primary) with EC with mets to bone (his arm) so he was stage IV. He too was told he was only looking at palliative care and his treatment plan was chemo and rad. He did his first round of eprubricine, cisplatin, and capecitabine (pill taken daily) and was knocked on his butt. He too was hospitalized and couldn't even keep down water for 7 days. After that he decided to try one more cycle at half dosage, which went better, but he decided his quality of life was too poor and after a lot of soul searching and family discussions decided not to continue.  This week he started having problems swallowing and having some chest discomfort. They did and endoscopy on wed. and while they were there they decided to put a 2cm. stent in, to keep a wider opening, instead of going through radiation. Dad has been a little uncomfortable the last couple of days and unable to eat much but apparently this is to be expected. The stent pushes open in the first week which causes the discomfort. Because he has the stent they will not have to do radiation. The scary and upsetting thing is that there is no more treatment, doctors appointments, anything. The good thing is dad is enjoying life much more now that he is feeling better and off the chemo. He was finally able to hold and play with my 9 month old son.As for the lung "inflammation" I would definatly request a biopsy, then there is no second guessing. Staging is something that seems very complicated and quite subjective, only your doctor can really answer that. I think it is important to know that wheather he is a III or IV he CAN survive either. I also asked about photodynamic therapy but was shut down with little answers. If you research stents, make sure that you are looking at steel ones. Some doctors use plastic, which are less durable and often migrate. Don't give up hope. This is very much and information overload. There are so many drug combos and procedures, just try to find what works for your dad. You will be in my thoughts and prayers. I hope that the next couple of days hold some answers for you. take care cmullen Sat, 01 Mar 2008 00:00:00 GMT  Hi glad of the update on your Dad. Will offer what I can for what it's worth. I could be wrong, but i believe photodynamic is only for stage 1, and the lymph nodes are still a metastasis. Seems lots of people have some of these lung things come and go. We had an excellent surgeon at Lahey, but she didn't want to needle biopsy lungs because the spot was so small you couldn't be sure you would get the spot, and to biopsy it otherwise was a lung resection which is surgical and probably more than you would want to put your Dad through after his recent chemo beating him up so bad. We had a lung resection for biopsy with Ivor-Lewis and again last year. Alone it was still 3-4 days in hospital, big incision, lengthy surgical recovery (add age, infection risk, etc). If they did radiation with chemo, I know in our case that meant smaller doses of chemo, and believe it or not that actually was easier on him in many ways than the later chemo rounds at bigger doses even though he had recuperated from surgery and not malnourished when we did the additional chemo. We had excellent results shrinking the tumor with the radiation and smaller chemo doses, and the chemo got the original lung nodules cleaned up in the process. We wouldn't have made it to surgery without both, but every case is different and complicated by other health issues. There is no blanket answer, but if you have doctors who have experience with EC you should be okay. Good luck with Dr on Tuesday. tongrenhealer Sun, 02 Mar 2008 00:00:00 GMT Thank you both for your prompt replies. The advice both of you gave makes perfect sense to me. After doing more research I found that photo dynamic is for stage I. Tongren-I'd be willing to bet that the info about the resect is what we'll be told on Tues. I certainly don't want my dad to endure anymore than he has to. Hearing your perspective on chemo with rad put me more at ease with the whole idea. I am going to send you a private reply about that.I will send an update after we see the dr. Tuesday.Thanks!    GeorgesGirl Sun, 02 Mar 2008 00:00:00 GMT Hi-This message board confuses me, and then there is the way emails just vanish at times. I meant to get back to you last week, but it was quite a week. Thought I had commented on MD Anderson, but don't see it, so now I'm wondering if email I was thinking I sent you got lost in cyberspace. Did I ever send you email about 2nd opinions?If I already sent this, forgive me. I do understand concern about sending them alone. It's just too much. If I were to get 2nd opinion I would use MD Anderson-I actually considered the possibility for the 1st time in the past few weeks.  They are supposed to be #1 and I am also drawn because they are exploring the use of alternative therapies as complements to tradiotional treatments. I have found homeopathy to be a great source of comfort and a way of deaking with some of the side effects. I've always been very comfortable with our oncologist and know she has access to expertise from Dana Farber, so to me it didn't seem like going to DF would make much difference. John Hopkins is supposed to be excellent-as well as Sloan-Kettering and both are east coast and closer to you or maybe another sibling.How did last week end up going? Is he doing alright, and does it seem to be shrinking more? Hoping he is able to swallow more.I decided our tests were positive since it baffled oncologist. The growth appears to have stopped again (yeah!!!) so it may have been as I suspected. The Christmas surgery compromised his immune system and he was unable to fight the cancer growth which is always trying to gain a foothold. It got a slight foothold and now he seems to have a fully functioning immune system again and we are able to keep it at bay. The scans show something non-specific which has stopped doing anything (growing). I keep tapping on his immune points on my doll daily, and he has become a regular on the stage 4 cancer conference call a few days each week. I have spring break next week, so we are hoping to take a few days off somewhere like the oncologist suggested. She said that's what she'd do if it was her husband. Need to get ready for school-the clock change has me a bit messed up, but being a very early riser, this is a shift Ilike since I tend to sleep a little later for a few weeks. Maybe I'll catch up. Do you always feel sleep deprived since your Dad has been sick?Have a great day (or as good a one as possible). Suya tongrenhealer Mon, 10 Mar 2008 00:00:00 GMT