ursol
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Posts posted by ursol
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Susan,
I'm praying that the Tarceva works for your mom.
Lilly
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Thank you everyone for praying. I was released from the hospital today. Pneumonia is cleared up as well as a urinary tract infection but they still are dealing with the Nausea and Abdominal pain so I'm taking meds that seem to be working for now and I'm on a TPN nutrition IV 13 hours each evening until the doctors feel I have worked my nutrition back to normal. I'm having trouble eating after all this stuff that went on. As far as the cancer..they are still not sure if it is or isn't but I will be discussing it at length with my Onc next week to decide next steps. Sorry to be away so long. Hope everyone else is fairing well.
Love Lilly
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HI all, If I already posted this, I'm sorry. I'm having computer issues tonight. So any how, here I go again. Last Saturday the usual abdominal pain that I get got more serious. I didn't sleep all night and the Vicodin did not seem to help me. But I muddled through and the next night (sunday night) the pain was excruciating and I was trying to pack a bag to Atlanta as I was leaving for a business trip. I knew I was never gettng out of here for that trip, the pain was not going away so I cold my Oncologists office and they paged a doctor to call me who told me to go to the ER. That was around 1:00 AM. I have been at yale ever since. A full week. They have tried to find out what is wrong. so far I have Pneumonia (figured that out yesterday and I'm on Antibiotics), they also found out that I have a urinary tract infection. also looks as though a small cyst on my ovary may have ruptured also causing this pain. What has me very scared is that a CT Scan shows a potential mass between my stomach and Kidney as well as another one on my right lung. Thank you for letting me get my emotions out. On top of that I cannot see my kids due to the SwineFlu Epidemic. Yale-New haven is protecting their patients by not allowing any vistors in the hospital under the age of 18. The docs are now talking about biopsy, Chemo, and god knows what else.
Lilly
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It's easier to blame poor diet, cigarettes, and lack of exercise on our cancers rather than potentially blame things like estrogen from the pill or the hormones they have been adding to our food for years as well as the pesticides on our fruits and the radon emitting from the ground and the polution we breathe every time we step outside. Because then we can line up and start sueing alot more people.
Unfortunately it will never change.
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I was diagnosed in June 2006 with tumor on right lung and mets to lymph nodes, staged IIIA. After lung resection, dr's found brain mets and mets to adrenal gland. restaged IV. After lots of treatments and a major surgery that almost killed me, I have no evidence of disease at the moment. 3yrs and 3 mos. survivor so far.
It's been a long road but I'm still alive much to my surprise and loving life every day. I have been very lucky and blessed and so thankful for all the prayers I have received.
Lilly
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Like connie, I also heard one shot will do it for adults. I called my oncologist and they told me to call my pulmonologist because they don't expect they will get doses of the vaccine early. She thought my pulmonologist may. I haven't called him yet. I believe children are first in line for the vaccinations. I'm not sure if I will vaccinate my kids.
My plan is to get the regular flu shot next week and then follow up with the H1N1 as soon as someone will give it to me. The swine flu seems to do the most damage to people with existing respiratory illnesses. With my COPD the way it is, if I get the swine flu I could go into respiratory failure so I'll take my chances with the shot and hope it gives me some protection.
Lilly
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Congratulations Geri!!
Great News
Lilly
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I'm home from MSKCC. They did a biopsy first before the CryoAblation and they tried 12 times to find cancer and came up with nothing...yipee!!!
The dr. thinks that maybe the pet scan picked up some inflammation (SUV was 4.7). Anyhow, he felt that there was no reason to move forward with CryoAblation which has some risk if he couldn't find a specific spot to freeze. So I'm home and feeling great, will get scanned again in a couple months.
Lilly
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Sandra,
I'm thinking about you tonight!
Lilly
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I have not been able to cut sugar out completely but I also try and cut what I can do reasonably as I feel it is better to be safe than sorry.
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Bucky was so sweet. What a wonderful woman..I am so sorry to hear this. We are losing so many to this disease, it is so unfair.
Lilly
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I wanted to give everyone an update. I went to Memorial Sloan and they want to move forward with Cryoablation of the area where my adrenal gland used to be. I have not yet said I'm definitely doing the procedure as it comes with some risk and I'm really on the fence.
My mom said that all procedures come with risk and what makes this one different. I'm not sure..but I got the sense that even though the doctor has done this procedure 100's of times successfully that he seemed a little apprehensive. I'm just not sure what to do. My other option is chemo (none of previous chemo's ever worked) and I don't know what kind they could try this time.
I just don't know what to do.
Lilly
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Great News Ned!
It is always comforting to see you doing well.
Lilly
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I'm with Nick on this issue.
What Obama wants to do scares the hell out of me and I pray that it does not move forward.
My husband is Portuguese and my family is Sicilian. We have dealt with hospitals oversea's. We actually hijacked my late father in law out of a hospital last year to get him back to the states where they would actually take care of him. In Sicily when you get to the emergency room you are put in the hallway until a bed opens. The doctors are not allowed to treat you until you are in a room. I know several people that died in hallways including my cousin from complications due to Rectal Cancer a few months ago. My mother in law waited 6 months in Portugal for an appointment to see a doctor because she couldn't walk well. My brother in law had a cyst or gash in his head and waited a month to see a doctor. These countries have National Health Care Systems. Yes, noone has to pay anything, everyone gets treated eventually but by the time some people will get treated it will be too late or they will have already been dead awhile. My cousins 9 year old daughter almost died this year drowning here in CT. She was clinically dead for several minutes but they brought her back to life and after incredible amount of work by the doctors at Hartford Hospital she fully recovered. My cousin in Sicily said to me while I was there "Thank God she was in America---they would never work that hard to keep someone alive here".
What really gets me about the debate on government deciding when end of life is is that for me when I was in the hospital and went into respiratory failure one middle of the night. A young resident looked at me and said "do you want me to intubate" I said "YES". The nurse next to him started arguing that I was a lung cancer patient and they shouldn't because it was pointless in not those exact words but I got the gist of what she was saying to him. What makes her GOD? If I want to live a long time, I'm going to and noone is going to stop me...I work my *ss off so I can have medical insurance to pay precisely to keep me alive for as long as I want to put up with the treatments. I have not quit working so I don't plan to die so easily. With that said Obama and the rest of the government can go pound sand if they think they are going to choose my end of life.
Sorry...my two cents.
Lilly
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I also started smoking at age 13 and chain smoked for 27 years. I quit smoking about two weeks after the doctors figured out there was something wrong with me and I potentially had cancer. I chewed nicotine gum and wore a patch at the same time for a little while eventually stopping the gum I kept the patch for about 3 months until I read that any nicotine either smoking, gum, patch etc lessens the effect of radiation. Well I wanted my radiation to work so I pulled the patch off and never put another one. For about a year or so after that I would occasionally crave them but then I also went into a coma after a surgery (two weeks). When I woke up I no longer had any cravings. I never ever think about it and cannot stand to smell smoke. That hospital stay also got rid of the bad coffee habit I had. I don't drink American coffee either anymore, just a morning expresso.
Lilly
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Michelle,
I'm praying for your husband. I also want to say although I don't know all the details, I agree with Carleen. Get another opinion.
Lilly
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Hello,
I'm back from a wonderful two week vacation in Sicily. We had a fabulous time inspite of the cancer. I hardly thought about while I was there and felt great.
Now that I'm back, my oncologist said the plan is I'm being referred to Sloan Kettering. Dr. Solomon (chief of Radiation or something similar) is going to discuss the possibility of Radiofrequency Ablasion. He has done the most of these in the northeast and it is his expertise. My apt. is next wednesday at noon. They wanted to see me tomorrow but I am fairly occupied this week.
I will also be seeing a surgeon there as well incase they choose that option (doubtful that I would agree to surgery after my last surgery)...but for haha's I'll talk to her.
Anyhow, I'll let you all know what that appointment is like.
Lilly
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I cannot talk about this with anyone but this group. Tomorrow my family and I leave for a planned vacation to sicily. I have looked so forward to this trip. I have had some pain in my right abdomen so the doctor had me go for a pet scan a month early to see if that nasty adrenal area is growing cancer again. Well the doctor called me tonight and said that it looks like uptake in that general area again. I'm so disappointed. He said he and the other docs have been conferring and will send me for further scans when I get back from vacation. This is not the smartest thing the doctor has ever done...he should have waited for me to come back to tell me this. I was only half done packing and I now cannot focus on anything but my cancer. I love all you guys...and so glad you are hear often times to listen to this stuff. Someone really needs to find a cure to this stupid disease. I'm pretty scared right now but I know this will pass and I'll get right back to my normal self. Hopefully the mediterranean will cheer me up.
Anyhow...I'll let you guys know what they decide to do with my cancer next.
Lilly
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Our TracyD
in GRIEF
Kasey,
I am so sorry to hear this news! I'm quite stunned and so sorry for you and the rest of Tracy's family. She really helped me alot when I first learned of my disease. She was very special.
Lilly
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Three Years
in HOPE
It has been three years since my diagnosis and I'm generally doing okay...Imagine that. For those of you that remember my first post here...I was in a complete panic and thought I was going to die in a month. Thanks to everyone who calmed me down with your responses and your continued support over these three years.
I'm ready for when this thing comes back to fight on! As much as I respect God, I'm not going easy...I have alot to contribute still.
Lilly
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Brian,
I'm sorry all this has happened to you. You have really been through alot. I am also Stage IV and am 43 years old with a 15 year old, 9 year old and three year old at home. I know it is not easy. I also work full time and am the primary financial resource for my family. My husband has been a great support and I'm at a good place now. In remission since September although I think it is back but won't know for sure until August when I get my Pet Scan. (I've had some familiar pain lately). I tend to live my life in monthly increments with big goals with bigger stretches. Right now, my goal is to make it to October 10th for my 25th High School class reunion. I'm on the committee so it is very important to me to be there. After that it will be something else I'm sure. Fight hard to stay alive and exercise whenever you can even though it is hard to breathe. I have fluid around my heart..it has been there for three years and it does make it difficult. (I hate stairs)...Anyhow...You are in my thoughts and prayers.
Lilly
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congratulations!!! great news
Lilly
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Tracy,
I often think of you and hope you are doing okay. You will be in my thoughts as you begin this new chemo and hopefully the radiation will alleviate the pain.
hugs
Lilly
An annual Christmas Wish
in GENERAL
Posted
Thanks Kasey for Posting this. Have a very Merry Christmas!
Lilly