snappy

Thank you to those that responded to my post. It was all busier when I was here in 2008. Sometimes, other than asking a specific question, you just want to search out experiences that others have had. If I posted a question I would like to think there were others here with a similar situation. NSCLC is generally a pretty big topic. Thanks again and I will just look around.

I have a question and I don't know where to ask it. I picked this section and topic thinking it might cover most everything. Maybe I shouldn't be asking but I want to know. I came to this forum in 2008 and there were a lot more people posting about their lung disease journey. I am especially referring to the NSCLC section. There is only one recent thread in the section with last post June 7th. The one prior post goes back to April 16th. Actually before the April 16th post, that thread went back to January. I even posted in it then. Where are all the posters. It was a lot more active when I was here before. I must be missing something because I know there seems to be more cancer than ever out there. I see familiar faces, and that is a really good thing. I was just going to do some reading and no particular questions.

Thank you Katie and Judy for the posts. Judy, it sure is frustrating when you just know what causes something and no one will listen. Glad you finally got someone to listen to you. I have read so much and I know that this does not mean it is the end for my husband. On the other hand, I have to not get to relaxed in the event it would turn that way. Everyone is different. I know that. I just have to keep re-assuring my husband and not sure he is hearing me but will keep working on it. His positive attitude is important. I have done a lot of research and am asking questions. I am learning a lot. I just have to be careful how I approach the Oncologist. We do have a good one and so I definitely want to ask questions and not tell him what should be done. Thanks, Mary

Hi all; Again, this is Lisa's topic but I want to thank fillise for adding to the responses. I know this disease can go either way but I am encouraged by these posts. We are not up to time for a new scan yet and so have no idea the response to the current treatments. Thanks fillise for your sharing. Katie, I have been to GRACE and got good thorough response on another topic other than the bones. Thanks for the referral. Had been referred before but this time gave it a try. Lisa, I keep thinking about your Dad and how he is doing. Will be praying for you both. Mary

Thank you Annette for your kind and encouraging words. I appreciate it.

Katie, just want to say a quick thanks for response. I do know how true Ned's words are. I have even kept them to remind myself. Thanks, Lisa, will keep praying for you and your Dad.

Not sure how and where I should update. I am just going to make this the second part of what is posted first in this thread. Regular Scans seemed well until latter part of 2010. Near end of year broke out in rash and got to where it looked just awful, and itching. Various issues including Type II Diabetes. Severe nose bleeds a year apart, the last November 2010. Platelets and WBCs were low, and on and on. 9-14-2010 had the 2nd of 12 ‘planned’ IVIG infusions (Octagam) every 28 days for a year. He did not like how he felt after infusions and did not want more. Were needed because his WBCs and platelets were too low. 10-19-2010 Routine PetScan . Saw Oncologist 11-4-2010. Scan shows activity in a couple lymph nodes. He wanted Joe to see his surgeon and if she could do biopsy to check if cancer. Only way to know for sure. Earliest appointment was 11-24-2010. Grrrr. There’s blood vien/arteries so near the spot if she were to hit a blood vien/artery, could bleed to death before could stop it. Prior radiation causes everything to stick together and harder to get thru as it toughens up, making it harder to work with. Both doctors highly suspect it is cancer. He finally agreed with the Oncologist to do another IVIG infusion 11-9-2010. By that time he had developed an awful rash. He cancelled the infusion. No one really felt the infusions caused the rash but we did. They insisted that was not one of the reactions to the IVIG. That made all this more disturbing. We now have paperwork that states it does that, just rare. All Joe’s reactions are on the rare side. Joe’s hands were bothering him long before he really broke out all over. It was gradual and then suddenly got worse. We did not even realize it was serious when it first started. Joe described it like something crawling under his skin. He also got BAD headaches right after the infusions. I had a link but not sure if I can post links on this board. No one would see him when he tried to get an appointment for the rash. The point is this was an extreme event. This rash became a big thing and got worse and worse before anything got it to clearing. The dermatologist finally wanted him on Prednisone but PCP said he could not without using insulin because Prednisone would raise Blood Sugar. Numerous appointments and several doctors with input. Frustrating to say the least. I won’t put any more of the details but it was an awful time. I share some of this for others just in case you ever have an experience and need to do some research to learn about it. There was a recall of some of what was used 3 days after Joe's first infusion. The second infusion he had and then they recalled all that was used, 9 days after his infusion. Ultimately, the manufacturer has dropped out of providing it. Only took it off the second time as a precaution. Just the first time that they had discovered too many people having problems. Altho their problems were different than Joe's. Still makes you wonder. This was serious and long time clearing up. His WBCs are looking good now. 12-2-2010 Oncologist told Joe he could do the ‘wait and see’ or start chemo. Since it most likely is the cancer, Joe chooses to do the chemo. They order another Petscan for the next day, 12-3-2010. Surprises me that they manage to get a Pet Scan for the very next day and yet all those weeks wasted before seeing the surgeon because we had to make our own appointment. GRRRRR! The PetScan had to be within 6 weeks of starting chemo and the October 19th one was too far back. He started on Chemo (Navelbine) and Erbitux (cetuximab) and had an allergic reaction to Erbitux. That one would have caused a rash on the face. It won’t now but might have been a good one to use. Joe has the EGFR mutation. The Dr was 'surprised' at the changes in the PetScan from October 19th to December 3rd. Now, the lung cancer has returned in ‘both’ lungs and the lymph nodes and spread to the lower lumbar in the bone/marrow. It is classified stage 4 terminal. He had 3 MRIs done also after the second scan. Thoracic spine, Lumbar spine and a Brain Scan. Brain was okay. The pain in his back was so bad one night that the doctor got him started on radiation. Think that started January 10th. Five days a week for radiation. Chemo one day a week for 3 weeks and a Neulasta injection on week 3, and then off 14 days and another 3 week cycle. After 3 cycles will test again and see where we go from there. January 20th and 21st no chemo or radiation as his WBCs (0.9) are very low. They had finally got good. I am spending quite a bit of time researching some cancer things. Appreciate any suggestions on anything I might do to hopefully help keep treatment to fight this disease. The shots he got Thursday and Friday were Neupogen. Today, January 24th WBCs are back up and treatment have resumed. I mentioned the EGFR mutation because I thought maybe tarceva would be an option. At the last Oncology appointment the Dr did not know if he could use the pill since he had the allergic reaction to the Erbitux (cetuximab). I thought he was going to check but not sure. I have inquired on another site but cannot say that I understand what I have read yet. Still reading thru it though. Next appointment is Feb 10th but still will not be thru with the 3rd Chemo cycle. It will start this week and lacking the one missed last week. I am confused as to whether the cancer is bones or bone marrow. Dr referred to it as bone but the test looks like it says bone marrow? I know a lot more than our first time around. It seems it is always new things to learn. This has been mind boggling. I want to spend quality time with him and yet don’t want something to slip by that we should know about. I appreciate any input. I will watching and reading the NSCLC section.

Lisa, I hope your Dad can keep his spirits up. It really will help him to fight this disease. You can really learn a lot on the Internet. Just as Ned posted. Of course everyone is different. You learn what options might be available. My husband is in a very similar situation as your Dad. I am trying to learn all I can so that at least he can have a chance to fight back. I will have you and your Dad in my thoughts and prayers. I still do not know if my husband’s cancer has gone to the bones or bone marrow. Oncologist said bones and yet the MRI reads like bone marrow. Could Ned’s post also apply if it is the bone marrow instead of the bones as Lisa's Dad's is. Other than that my husband is just about the same. Thanks. Hope I didn’t do this wrong by asking here but I thought maybe just a yes or no.

Thanks Carol, That one does looking interesting. I was just checking on two of the boards I post on first to see if anyone might have any information. MD Anderson is one of the 3 places that specialize in sarcoma. Ewings Sarcoma is more often young people. Anyway, thanks for the site.

Connie, Thank you so very much for making that call. I really apprciate it. How sad. I was afraid of something like that but hoping it was not the case. She always reached out and offered help anytime someone was diagnosed with cancer. Thanks again,

Hi Patti; I cannot seem to get her out of my mind. I would let you know if I ever heard but it is not seeming likely. Connie; thanks for all of the info. I did know about Katie trying to call and that was the last I heard. I also had tried emailing and it didn't come back but also didn't get answered. Thanks again.

Hello and thanks for the reply. I already did that. Nothing there of any help. I think this pretty well answers my question. I know it is really rare. Just thought I would try asking. I will just find a message board for sarcoma. I just wanted to start somewhere that I had already been. Thanks again.

Is there anywhere on this message board that talks about Sarcoma cancers. Specifically Ewing's Sarcoma. It is generally a childs cancer but not in this case. I have read at MD Anderson but looking for personal experiences like are shared here. Thanks,

Hi Katie; I know there was a post here somewhere and you had tried every way to reach Judy-OK and got no answer. Wanted to see if you ever did reach her. I cannot find that other post. I found the first one I posted. You even tried calling. Thought I would ask while I was here. Came to ask a new question. Thanks,

Hi Judy; I am a little late on this post but if you are reading, I want you to know that I am still thinking of you and praying for you. You are one that I watch for.