kristinj

Hi Friends, It has been a month and a half since we lost our Dad on November 2. His battle was short- 2 months- but, arduous. Now, we are in full on support mode for one another, but mainly, my Mom. She is just so sad, but is also angry with the doctors, hospital, nurses, the whole thing. I just do not know what to say to her that can provide comfort. I really do not think that there is anything, but, it is so hard to hear her sadness and not be able to help. I am also not in that place with her, so I am not sharing the same emotion. I feel a certain peace and acceptance of my Dad's passing and while I am miss him terribly and get hit by waves sometimes, I also know how much joy and love he brought to all of us. He lived a wonderful life and the way that I can testify to that, is by celebrating and living the best way that I can. Mom will not be there for a while. It is so painful to watch her sadness and grief. Thanks for listening. Happy Holidays. Kristin

Hi Friends, It has been a month and a half since we lost our Dad on November 2. His battle was short- 2 months- but, arduous. Now, we are in full on support mode for one another, but mainly, my Mom. She is just so sad, but is also angry with the doctors, hospital, nurses, the whole thing. I just do not know what to say to her that can provide comfort. I really do not think that there is anything, but, it is so hard to hear her sadness and not be able to help. I am also not in that place with her, so I am not sharing the same emotion. I feel a certain peace and acceptance of my Dad's passing and while I am miss him terribly and get hit by waves sometimes, I also know how much joy and love he brought to all of us. He lived a wonderful life and the way that I can testify to that, is by celebrating and living the best way that I can. Mom will not be there for a while. It is so painful to watch her sadness and grief. Thanks for listening. Happy Holidays. Kristin

Very sad to write that my Dad only made it through one round of dialysis and passed away early this morning. He was only 59 years old and had battled for 3 months. We are all completely shocked and are just wandering from room to room crying with one another. His poor heart was just not strong enough to handle everything and they couldn't get it to start again. Thanks for the support. Kristin

Dear Friends, Haven't written in a while. My 59 year old Dad is being treated for a rare cancer called Ewing's Sarcoma that began in his lung. We thought it was NSCLC IIIB at first, but it is this Ewing's. The tumor is large and wreaking all sorts of havoc on my Dad's body. He has only been able to have 1 treatment thus far b/c it started shutting down his systems. We were trying to help him rebuild strength when his kidneys decided to shut down. So, after trying various IV therapies, we are now beginning dialysis tomorrow. There have been so many setbacks on our treatment journey and my Dad is so sick. He needs something positive to happen so that he believes that there is hope. We are all starting to fear the worst. This is hard for me to type because we have been so positive- but, he just seems to be getting sicker. I hate all of this and just needed a place to vent. I do not want to see my Dad continue to suffer, but I cannot imagine a world without my Dad in it. Thanks so much for listening. Kristin

Hello Friends, Haven't been here for a while. Dad's LC diagnosis changed to Ewing's Sarcoma, so my researching has changed, as well. Just venting frustration with this whole cancer nonsense. Poor Dad feels awful and is frightened and very in need of support. Treatment just started and it is intense, in-patient, 3-5 days each cycle. Scary stuff...I am jsut so upset that this disease has entered our world and really messed with the flow of everything. It feels so selfish to be angry, but that is where I am. I just want normal back. Thanks for listening. Kristin

***Friends, I also posted this on Grace, so apologies in advance.*** Dear Friends, Three weeks ago, my 59 year old Dad was diagnosed with NSCLC Stage IIIB located in the pleural cavity with no visible metastases acc. to the PET scan. We met with an onco. who was wonderful and he recommended a fairly standard treatment plan. That same day, we met with doctors at one of the NCI centers in our city- Fox Chase Cancer Center. The doctors there were concerned that the pathology had inconsistent markers and demanded a review. We contacted our first onco. again and he told us that it looked like a large cell neuroendocrine tumor stating that... "The tumor does not have the typical markers for non-small cell lung cancer, but is morphologically not consistent with small cell lung cancer. Large cell neuroendocrine tumors may have aberrant expression of various markers, so a tertiary review is certainly reasonable. The staging of the tumor is based on the CT and PET scan findings. We use a TNM staging system to define the extent of disease. The tumor is invading into the mediastinum (center structure of the chest). This is classified as a T4 tumor. We are giving him the benefit of the doubt that the fluid around his lung is not involved, but that would also be considered T4. There are lymph nodes in the left hilum and mediastinum that are enlarged and abnormal on PET. This would be classified as N2 disease. There was no evidence of distant metastases, which is M0. The final staging is T4 N2 M0, which is stage IIIB." We have been anxiously awaiting the results of the new pathology run by FCCC and today Dad went in to have fluid around his lung tested (although it was not cancerous acc. to the PET). While there, they drained almost 1 1/2 qts. of fluid, which may have been responsible for his recent breathing difficulties. Finally, this evening, we received a call with the final test results. It turns out, acc. to the doctors at FCCC and a 15 member consulting panel, that this is not lung cancer at all, but an extremely rare for of cancer called Ewing's Sarcoma and the tumor was classified as a Primitive Neuroectodermal tumor. We were completely blown away and are looking for all possible news on this type of cancer. The incidences are so rare that there is not much available on the computer. Some of the symptoms seem to be consistent with Dad's conditions- swelling in the joints esp. So, I am looking for a few things... 1. Do you know anything about this and the treatments? 2. Should we get another opinion, or is this so rare that it wouldn't be posited if not correct? 3. Should we stay with FCCC or head to Sloan Kettering? 4. Is this something that could be easily confused with lung cancer? 5. Where the heck did all of that fluid come from? Looking forward to your responses. Kristin

Dear Friends, I have been eagerly awaiting the return of my computer so that I could update you on my Dad's appointments and test results. Great news- the tumor and cancer seem to be isolated and completely contained in the pleural region with no spreading anywhere else- this was found in the PET scan and we were all so very relieved. So, we began our appointments this past Thursday. The first, with the local onco., went great and my Dad lest feeling confident and ready to begin treatment. The second, with the NCI, research based Cancer center, also went well, but the doctors there began to question the pathology of the tumor and highly recommended not beginning any treatments until the pathology was reviewed and studied more carefully. So, now, treatments are on hold until we receive more info. Dad is totally frustrated and just wants to get started. He is having a hard time sleeping- quit smoking with the patch, combined with nerves from all of this- is feeling very tired due to the limited flow of oxygen b/c of the position of the tumor, and is feeling pressure in his chest, poss. also from the tumor. We want to start battling this too- ASAP!!!! But, the contradictory elements of the pathology are concerning and the holiday weekend doesn't help! Any wisdom? Thanks. K.

Dear Judi, TS, and Ned, Thank you so much for your thoughtful responses. I am beginning to think of this forum as a real support and place to find help from quite informed people. We have 2 appts. in one day this Thursday and will find out the results of the PET scan to determine the spread of my Dad's cancer- hopefully, it is only in the large mass that we already are aware of...and will also hear of treatment options. The first appointment is with the local oncologist and the second is Fox Chase Cancer Center in Philadelphia- all on the same day! So, we will get to hear several options and possible clinical trials before we schedule any treatments. Thank you again. This really means so much to me. K,J.

Hello Friends, We are in the earliest part of our LC process and are desperately trying to get our appointments scheduled. Do you have any help tips for how to get appts. to see the specialists any quicker? We are located near several excellent Cancer hospitals, but cannot seem to get appointments with speed- end of the month for the first one. We will meet with the local Onco. this week, but were hoping for a consult or two before starting treatment. Also, if my Dad begins his treatment with the local Dr., can that be tweaked based on the rec. from the Univ. hosp. specialists or should we wait until we consult with several specialists? Is it worth going to Sloan Kettering? We just want to get the best doctors to recommend the best protocol- of course, so does everyone else! HELP!! Thanks! Kristin J. Dad- age 59 NSCLC 3B- waiting for PET results...fingers crossed.

Dear Kasey, We are heading first to the local oncologist- Regional Hematology and Oncology Associates in Langhorne with St. Mary's Medical Center. Dr. Evan Alley is our Oncologist there. We are also waiting to hear back from Fox Chase; have an appointment at Abramson at Penn with Dr. Corey Langer, but that is not until 9/28- any tips on getting it sooner? Also, putting in a referral to Penn Presby. for Dr. James Stevenson...mayber sooner? Willing to go to Sloan Kettering if that is necessary or would be beneficial. My "poor" (because of our high strung selves) Dad is surrounded by extremely strong, Type A women, my sister and I currently in the lead who are making all sorts of phone calls and beginning to stalk the doctor offices! Mom is still adjusting, but I am sure she will be on board soon- until then, my Sister and I are enough for most!!! She is on the organic/holistic kick- I am the appointment, paperwork, insurance guru. We just like to do anything that makes us feel like we have some sort of control. Thank you again. It means so much to have a support team of Survivors!!!! Please let me know of any insights any of you may have- Cancer Treatment Centers of America anyone???

Dear Friends, My Dad was diagnosed 1 week ago with Stage 3B NSCLC. He is only 59 years old and is in otherwise good health. We are still absorbing the diagnosis and are in the process of setting up appointments, 2nd, 3rd, 4th opinions, etc. We are trying to figure out the best way to get the appts. sooner, since we wanted them YESTERDAY! I found this site today and I am just so grateful. I know that my Dad can live with this disease and that he will be one of the amazing stories. It is just nice to know that others have done the same. So, thank you and I look forward to the support that I believe I will find here. Any advice is welcome...I am the oldest in the family- 33 with 2 children ages 5 1/2 and 1 1/2; a sister who is 28; brother who is 29; and a baby sister who is 20; don't forget my Mom who is really trying to figure this out! God Bless you all and take care. Smiles, Kristin J. Philadelphia area