ursol
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Posts posted by ursol
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Andrea,
I just want to tell you that I think you are a truly amazing woman. You go through emotionally draining issues with starting a new family yet your support of your parents is always so strong and unending. You always find the time to give to the folks on this site as well such as what you did with the cookbook. I'm praying for perfectly beautiful healthy babies for you and continued good news for your parents.
Lilly
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I spoke to my oncologist today about the PET Scan results and next steps.
The Thoracic team seems pretty certain that it is cancer in my right Adrenal gland. Although, they will not know for sure until they take it out. Next step is first Brain MRI to insure no other spread and then laporascopy surgery to remove the Adrenal gland. MRI will occur next week, since they are still trying to get the surgeon, that may be end of next week or week after. I am however still holding out hope that the PET Scan is wrong and it is not cancer.
If it's lung cancer metastasis, I'm restaged IV and I will begin three or four rounds of cisplatin, docetaxol and Avastin. I was told that this combination with Avastin has still not passed phase three trials but he is recommending this. He also thinks the best thing for me is after the four rounds of chemo to continue on Avastin for a full year. Has anyone gone through this combination before?
Anyhow, such is life, I still cannot believe this is happening. I know God has a plan but I prefer to be in charge of this plan myself.
Lilly
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Barb,
I'm sorry you have to go through this again. Sending a big hug your way ((((barb))))
Lilly
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Bill,
I'm not sure what I would want, the doctors to tell me there is nothing more they can do or just have them not say anything. My cousin passed away on Thanksgiving at 71 after a 16 year battle with Lymphoma. The Dr.'s told him there was nothing left they could try. So he said, "let me go home". He died at home within a week. In that week he summoned his entire family as he tried to say goodbye to each, some made it in time, others did not. His 92 year old mother (my aunt ninette) was by his side when he died. At the funeral I asked her "did you see your mom die too". Her mother had died at age 39 of cancer. My aunt said yes, I was also by her side. What I wanted to know was did she tell her what to do after she died, How to care for the other kids, my aunt was the oldest. Did she talk about the end at all. I asked. My aunt told me that she never knew she was dying. They never told her. I'm not sure I would want that either. But I do agree that doctors are not God and they really do not know when we will go.
I planned to go to sicily this year and england soon after with Jerusalum on my short list must see places I need to travel to soon but now I may be continuing chemo for awhile into 07.
Lilly
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That is fabulous news. I hope I can absolutely be there next year.
Lilly
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Bill,
Thank you for this post. Your honesty is refreshing. Although I quit with my diagnosis, I did not quit for myself. I quit for my family as I knew I could not put them through my cancer journey and continue smoking. Had they not been part of my life, I would have continued smoking throughout because that is who I am.
I smoked for 27 years. The only regret I have is the fact that I needed to start smoking at age 13 to look cool. I wish I had never started. But the rest of the years were for me also very productive, studying late into the night or working late with the cigarettes and coffee to keep me going. I loved my habit so much that I told my husband that when I finally die, I want a carton of Marlboro buried with me. I will miss them always.
I hope at some point you can find the strenghth to quit smoking as it is absolutely bad for you. But did it cause our cancers, I don't believe that entirely..There is much more to lung cancer than the researchers have bothered to figure out because they seem to think the entire answer is in the tobacco.
Lilly
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Joanie,
I'm so sorry to hear this. You seem very strong so you will squash the bugger for sure. I'm praying for you.
Lilly
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I wanted to update everyone on the PET scan and chemo. I'm actually finally beginning to feel normal again and my next chemo was scheduled for Dec. 5th. I just spoke with my oncologist and that will not happen. My Adrenal gland lit up on the PET scan so tomorrow I have an appointment and today the dr.'s are deciding next step. He is recommending surgery to remove the Adrenal gland and then based on the pathology results I will either stay on the clinical trial and continue with the final chemo round or come off the trial and get several more cycles of very aggressive chemo (stronger than current dose). So the hard battle continues.
I attended my cousins wake and funeral. I found it very difficult to attend because he died of a form of cancer. It was emotionally very difficult but I'm glad I was there.
One more update: When I first found this site I remember the post I put out there thinking I was going to die instantly and not see my baby turn 1. Well yesterday was her 1st birthday. I made it!!!!
Lilly
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Tiffs mom,
I'm so sorry for your loss. It seems that lung cancer is attacking the young at greater numbers all of a sudden. My mother thinks it is the polution we breathe and the pesticides/hormones in our food source.
The site you have developed in your daughters memory is wonderful.
Lilly
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To All,
I'm new at this and feel like I'm not as strong as so many of you are. I started my adjuvant chemo on Tuesday, November 14th. Paclitaxol and Carboplatin. Got through that okay. Felt fine on Wednesday. Woke up Thursday and lost my taste buds. Was taking Anzemet for nausia but as of late afternoon began my vomiting. No liquids, no food, no medicines, by Friday morning I was beat and dehydrated. Called my oncology clinic and off I went for IV fluids and Nausea meds. I also had developed terrible pain in my stomach and was given morphine. By end of friday, I was sent home as they thought the vomiting was under control. I vomited again in the car ride home. And it continued throughout the night into the next day. Saturday I went to the ER per my Dr. I was admitted and had a Chest X-ray revealing slight liquid in lungs. Dr. not concerned. Had a CT Scan that revealed an enlarged bladder therefore a catheter was ordered for about 1 day. Was sent for an Endoscopy to insure I did not have a stomach ulcer or other related stomach issue. That was negative. By now it is Tuesday, 7 days since Chemo and I'm feeling better and my oncologist tells me that they noticed something they may be concerned about on my CT scan. My Adrenal gland seems enlarged and having compared to previous scans, they feel a new PET scan is the best course of action. I am scheduled to go for the PET Scan this coming Tuesday night. He went on to talk about worst case scenario's etc. (all lost to me as I just was astounded at what I was hearing). He said I could go home since it appears I had finally stopped vomiting 10lbs lighter later.
Luckily I was out in time for Thanksgiving but I still could barely eat any food, and spent the day with my 30+ family at my Aunt's house thinking about what will come next. I found myself fighting the tears all day. I get home that night and my mom calls me to tell me that she just received word from Boston, my cousin lost his 16 year battle with Lymphoma and had passed away Thanksgiving morning.
Salvatore Coppola, such a wonderful man that could never do anything bad to anyone gone at the age of 71. He called me several weeks ago to give me encouragement in my fight and told me to be strong and stay positive. I will miss his spirit and attitude.
Lilly
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judy,
i agree with don.
Lilly
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Rich, glad you made it home for Thanksgiving.
Lilly
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Trish,
congrats. After the first 6 rounds of chemo and my hair was still there, idecided to color it. I have read some articles on the internet that stated it was color dyes from several years ago that were suspect due to certain ingredients that are no longer used in dyes.
Lilly
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Danica,
as you prepare to go for your pet scan, I wanted to send you my warmest thoughts that all goes well. I know how you feel as my Pet Scan for a potential issue is Tuesday.
lilly
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Debra,
Welcome to the board. This is a wonderful place with wonderful people. It's okay to cry, I still do on some days. I take Xanax as needed to get me through the rough moments. Good luck with your start of Chemo, drink lots of water.
Hugs,
Lilly
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Shall I say I was scared..Yes I was. But I started chemo Paclitaxol and Carboplatin. Today was the first of two rounds post operation. I will have the next treatment on December 5th.
I arrived at 9:30 AM and first met my medical oncologist. He is the sweetest man and he said to me, "are you sure you want to start today, I feel guilty for pressuring you to start in November when you originally wanted to start in December". Well I told him I was just being a baby and it was not his fault, I told him the blame lied with the ladies of this board who through their wonderful support gave me the courage to move forward as I should.
Anyhow, got through it. I was finished at 5:30 PM, it was a long day. I feel okay tonight but I know by Thursday I'll be hurting but mentally I'm okay now that I'm done with this round.
Lilly
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I'm sorry you are in soo much pain today. I would definitely call your oncologist in the morning at the latest.
I hope they find something to give you for relief, you need to stay hydrated.
Lilly
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Sending prayers to Darrell and wishing him a speedy return home from the hospital.
Lilly
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Has anyone else experienced Gastritus or Stomach ulcers after chemotherapy, radiation and or surgery. For the past week and a half I have had terrible stomach pains that have rendered me useless to my family. Today, my surgeon told me I probably have Gastritus or the start of a stomach ulcer and is prescribing Nexium. I hope this fixes the problem as I start chemo again on Tuesday and I cannot handle this stomach pain anymore. If anyone else has gone through this and can tell me what medicine they took for relief, I would appreciate the advice. Thank you
Lilly
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Raney,
I'm soo sorry to hear that you have been diagnosed with this dreaded disease at such a young age. This is a great site with lots of wonderful folks. I am 40 years old and also diagnosed this year when my baby was 6 months old. She is now 11 months and about 1 week old. I also have a 7 year old and 13 year old. I start Chemo again in a few days. I understand how difficult this disease can be when you have small children at home. Feel free to PM me anytime if you want to talk.
You are in my thoughts
Lilly
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Andrea,
I'm happy you had positive results. Hoping for your surrogates pregnancy!!!
Lilly
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I can't express in words how I feel about all of you. You are all so awesome and comforting.
It has been a crazy weekend. I had nine 13 year old girls sleep over for my daughters birthday on friday night and I had to sleep in the recliner chair in the family room all night to make sure they didn't do anything stupid. But they all went home saturday afternoon thankfully and my daughter had a good birthday.
Anyhow, as I read each post it helped me come to the conclusion that I have been a baby about surgery recovery and I should just do chemo ASAP and be done with it. If my hair is going to fall out, the sooner it does the sooner it will grow back. Then I also thought I was supposed to go back to work on November 13th. If I can start chemo before then, I will just continue my disability until chemo is over (I think I have enough weeks at full pay left to do that)
Tomorrow I am calling my Oncologist to tell him I want to start immediately. Thank you everyone for giving me the courage to get through this.
Love Lilly
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congratulations! Great News!
Lilly
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I'm having such a bad day today just thinking about chemo. It has been almost 5 weeks since I had the lower lobe of my right lung removed and today I saw my oncologist and he is ready to start my first of two rounds of Paclitaxol/Carboplatinum any day. Although I have previously gone through 6 cycles, it was a lower dose. Now I'm really scared to go through this although I know I have to. For the first time today I got emotional at the doctors office and couldn't even speak. Why? All because my hair will fall out this time. It didn't the first time but I probably won't be as lucky. I should be thrilled that I'm cancer free for the moment but instead I'm so frightened of more chemo and my hair.
I think it's the compounding stress of dealing with this disease since May of 2006 and trying so hard to keep working and taking care of the kids and pretending that everything will be okay and then the reality of surgery and the pain and discomfort it causes has made it difficult to remain positive.
I also don't know what to do about the chemo timing. According to the clinical trial, I have to have the chemo no later than 10 weeks after surgery, (that would be about Dec. 11th). I thought December 1st would be good. My medical oncologist wants to start in November. Should I just move forward and get this over with but I don't feel well recovered from surgery and won't I need to be strong for chemo? Decisions, Decisions?????
Lilly
UNSELFISH
in GENERAL
Posted
Bill,
I for one am so grateful that this site exists because today my oncologist gave me some fairly bad news and he said afterwards to me. "you seem okay psychologically". I guess he thought I should lay down on the floor and start crying how unfair life is. This website has provided me the courage to face every challenge because for every challenge I have to face, someone else on this board has gone through it before me and many are surviving well and that is what I will bank all my hopes on.
Lilly
Ps...Thank you Katie and Rick