Donna G
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Posts posted by Donna G
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Dr. C called this afternoon with the biopsy result - which was small cell of intermediate variety. I don't know what the intermediate variety means. If anyone here does, please tell me. He wants Steve to be admitted to the hospital, overnight, while taking Cisplatin & Camptosar - 1 day every 3 weeks. Anyone here been hospitalized while receiving chemo and/or been given this particular combination? I just read some scary reports about the use of Camptosar. He wants to begin after Labor Day and the appointment at Sloan-Kettering isn't until September 15. On the other hand, we don't want to waste precious time, either.
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Dr. C called this afternoon with the biopsy result - which was small cell of intermediate variety. I don't know what the intermediate variety means. If anyone here does, please tell me. He wants Steve to be admitted to the hospital, overnight, while taking Cisplatin & Camptosar - 1 day every 3 weeks. Anyone here been hospitalized while receiving chemo and/or been given this particular combination? I just read some scary reports about the use of Camptosar. He wants to begin after Labor Day and the appointment at Sloan-Kettering isn't until September 15. On the other hand, we don't want to waste precious time, either.
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The other day at work ( In a hospital) a family member was talking as I and another nurse helped with her mother. She is telling us that teens have 5 vices that they want to try- 000, sex, drinking, smoking and drugs. She pondered a moment and said she would want her teenager to pick smoking-- one cigarette won't kill you and they are easy to quit. Immediately I piped up!!! No! cigarettes are more addicting than cocaine, and she replide - that drugs could kill you the first time- I said I would pick 000 she said O NO THAT WOULD BE TERRIBLE . After I left the room the other nurse and I just shook our heads.
Any body have any opinion?PS YOUR HOUSE YOUR RULES. Know that you are sending a message with that rule.
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Talked with Maurie. Connie was feeling better today so they discharged her and she is home.
She is on a blood thinner to prevent clots so tomorrow she has to go out to get lab test. She can not drive he said for 4 weeks. They gave them a couple a tanks of O2 to get home ( they live about 30-35 miles north of St. Paul) and there she has a condenser to give her O 2. Hope soon she will be up to posting. Maurie said she was pooped and lying on the sofa. He will be the chef tonight. Please continue to keep Connie in your prayers, still in recovery. Thanks so much Donna -
More perplexing than before..... Steve's March biopsy confirmed Small Cell and he was treated with 6 cycles chemo, ending July 18. In March his CEA Tumor Marker was 41.5, April's was 29.3. When he finished the chemo, I asked Dr.C if he could add the Tumor Marker to the next bloodwork, he said he wouldn't do it until November becaue he was sure it was lower than 29.3 in April. I asked the nurse to add it.. NOW IT IS 82.6!
We got a phone report of the biopsy results and they say Small Cell Intermediate Variety. I picked up all med records, CT & PET films and get the pathology slides tomorrow - all in preparation for Sloan. Yesterday, we were told that all his bloodwork was normal again and we were thrilled. When I got the results today, his red counts are still low, but not low enough for Procrit. Other values are still either high or low, so all wasn't normal again, but greatly improved. 
Has anyone else had a classification of Small Cell Intermediate Variety? Does this mean part small cell and part non-small cell? All mets except 2 in lymph nodes, liver and adrenal were gone after 2nd chemo cycle. The 3cm mass still present has been stable since April. Makes me think that all was Small Cell, except this mass and 2 nodes, which didn't respond to chemo like the other did. And those are non-small... STILL PRAYING FOR A MIRACLE!! -
More perplexing than before..... Steve's March biopsy confirmed Small Cell and he was treated with 6 cycles chemo, ending July 18. In March his CEA Tumor Marker was 41.5, April's was 29.3. When he finished the chemo, I asked Dr.C if he could add the Tumor Marker to the next bloodwork, he said he wouldn't do it until November becaue he was sure it was lower than 29.3 in April. I asked the nurse to add it.. NOW IT IS 82.6!
We got a phone report of the biopsy results and they say Small Cell Intermediate Variety. I picked up all med records, CT & PET films and get the pathology slides tomorrow - all in preparation for Sloan. Yesterday, we were told that all his bloodwork was normal again and we were thrilled. When I got the results today, his red counts are still low, but not low enough for Procrit. Other values are still either high or low, so all wasn't normal again, but greatly improved. Has anyone else had a classification of Small Cell Intermediate Variety? Does this mean part small cell and part non-small cell? All mets except 2 in lymph nodes, liver and adrenal were gone after 2nd chemo cycle. The 3cm mass still present has been stable since April. Makes me think that all was Small Cell, except this mass and 2 nodes, which didn't respond to chemo like the other did. And those are non-small... STILL PRAYING FOR A MIRACLE!! -
Karen-
Hopefully David will continue to improve and you won't have to worry about surgery. I asked Steve's pulmonologist if surgery was an option with SCLC and he said NEVER.. then added NOT ON PURPOSE. He explained that sometimes a small nodule or lesion is spotted on a CT and since it was localized, it would be removed, then the biopsy verified that it was SCLC. He went on to say that if it was known BEFORE the surgery that it was SCLC, surgery would not have been an option. From everything I've read over the past 5 months, chemo is the most effective on SCLC. KEEP PRAYING FOR MIRACLES!!
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I agree that the current onc seems very incompetent and "not with the program." In the beginning, he wasn't like that. He was very professional and seemed to have everything "on the ball" - but when you have just found out you have LC - you're receptive to ANY type of hope of treatment. He did get Steve in a clinical trial, for which we are grateful.
Today, I will get the biopsy report.... Then, I will call Sloan-Kettering and see if I can get Steve seen earlier than mid-September. If not, we will try to see another onc in the meantime.
A friend said to me today that if Dr. C came into the examination room, reading the report that he said he didn't even have, then he didn't have time to absorb the contents or form a plan of action. I agree.
Steve's last chemo treatment was July 18 and he hasn't even had a port flush.. They forgot to schedule it and he has his first one tomorrow - 6 weeks after his last chemo!
Dr. C's office just now called.... The appointment with the radiologist is September 11.
As the rest of you are doing - ALWAYS PRAYING FOR A MIRACLE!!!
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I agree that the current onc seems very incompetent and "not wioth the program." In the beginning, he wasn't like that. He was very professional and seemed to have everything "on the ball" - but when you have just found out you have LC - you're receptive to ANY type of hope of treatment. He did get Steve in a clinical trial, for which we are grateful.
Today, I will get the biopsy report.... Then, I will call Sloan-Kettering and see if I can get Steve seen earlier than mid-September. If not, we will try to see another onc in the meantime.
A friend said to me today that if Dr. C came into the examination room, reading the report that he said he didn't even have, then he didn't have time to absorb the contents or form a plan of action. I agree.
Steve's last chemo treatment was July 18 and he hadn't even had a port flush.. They forgot to schedule it and he has his first one tomorrow - 6 weeks after his last chemo!
Dr. C's office just now called.... The appointment with the radiologist is September 11.
As the rest of you are doing - ALWAYS PRAYING FOR A MIRACLE!!!
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Wow! I just read your story. If you are now only 46 your 5 kids are still young! They need you so you had better lick this. I was diagnosed that year - 97' also but it was December just before Christmas. So you have me beat . I believe BAC does not respond to most Chemos but if it were back I wonder if they could do RFA? Waiting for the repeat Scan is the pitts!! Welcome to our family we have others with even little ones here. We all try to help and inform each other. Again , welcome and I pray you find the support you need with us. Donna G
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I certainly appreciate all the input and suggestions regarding Steve's oncologist not being truthful. I read each post many times and thought about each one. I followed the links given and read everything. Thank you!! I don't know why we thought today's oncologist (Dr. C) visit should be any different........ Last week, Dr. C said that maybe Steve had cancer in the air sacs.. and I asked if another bronchoscopy could be done and he said NO, not unless massive bleeding had begun. We went straight to the pulmonologist (Dr. N.) After yesterday's bronchoscopy, Dr. N said he was going to send a report STAT to Dr. C so he would have it in time for today's visit. When Dr. C came into the room (after we had to wait an hour and half), he was reading Steve's folder. He asked Steve how his cough was and Steve said he still had it and he said that he had decided that he should see Dr. N again and have another bronchoscopy!! Steve said he had one YESTERDAY and Dr. N sent him a report. Just then, Dr. C was called to the desk and he put Steve's folder on the table, still opened to the page he was reading when he entered the room. Of course, we looked at it and it was the PULMONARY REPORT - dated TODAY! On top of it was a handwritten note from the pathologist that said that the specimens submitted were positive and in the process of being classified.
When Dr. C returned to the room, he immediately went into explaining the chemo worked rapidly at first on Steve because it tackled and killed small cell lung cancer, but the 3cm piece that didn't dissolve because it was probably non-small cell lung cancer, which wouldn't respond to chemo. He said that he will treat the 3cm remainder with radiation, but it would probably be 2 weeks before he could get an appointment with a radiologist for a consultation. hmmmm That's about the time we'll be leaving for Sloan-Kettering.
Steve asked if the blocked bronchial tube Dr. N observed (unchanged since March) was the cause of his cough and he said ABSOLUTELY - NO DOUBT ABOUT IT. He went on to say the airway is totally blocked in one area....
It's reassuring to know that he knows that without even knowing he had a bronchoscopy or saw a report 10 minutes earlier. For weeks he's been brushing the cough off as asthma or post nasal drip.. Last week, Dr. C was to have gone over the PET SCAN results with us, but lost the report and hadn't looked at the films.... After that, we got the films, as we're gathering the required documents to take to Sloan-Kettering. Two days ago, Dr. Cs office called me and said that they called for the films and were told we had checked them out. She asked if we could drop them off at Dr. Cs office, as he wanted to go over them with us today. I took them yesterday, but he didn't even mention the films nor the report today, either!!
Upswing of today's visit - all blood counts were back to normal and NO MORE PROCRIT!!! Just more frustrations...........
We're going to Sloan on September 15 and are on a cancellation call list, too. We're also going to try to see another oncologist here before going to Sloan.... September 15 seems so far away when time is so crucial.
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I certainly appreciate all the input and suggestions regarding Steve's oncologist not being truthful. I read each post many times and thought about each one. I followed the links given and read everything. Thank you!! I don't know why we thought today's oncologist (Dr. C) visit should be any different........ Last week, Dr. C said that maybe Steve had cancer in the air sacs.. and I asked if another bronchoscopy could be done and he said NO, not unless massive bleeding had begun. We went straight to the pulmonologist (Dr. N.) After yesterday's bronchoscopy, Dr. N said he was going to send a report STAT to Dr. C so he would have it in time for today's visit. When Dr. C came into the room (after we had to wait an hour and half), he was reading Steve's folder. He asked Steve how his cough was and Steve said he still had it and he said that he had decided that he should see Dr. N again and have another bronchoscopy!!
Steve said he had one YESTERDAY and Dr. N sent him a report. Just then, Dr. C was called to the desk and he put Steve's folder on the table, still opened to the page he was reading when he entered the room. Of course, we looked at it and it was the PULMONARY REPORT - dated TODAY! On top of it was a handwritten note from the pathologist that said that the specimens submitted were positive and in the process of being classified. When Dr. C returned to the room, he immediately went into explaining the chemo worked rapidly at first on Steve because it tackled and killed small cell lung cancer, but the 3cm piece that didn't dissolve because it was probably non-small cell lung cancer, which wouldn't respond to chemo. He said that he will treat the 3cm remainder with radiation, but it would probably be 2 weeks before he could get an appointment with a radiologist for a consultation. hmmmm That's about the time we'll be leaving for Sloan-Kettering.
Steve asked if the blocked bronchial tube Dr. N observed (unchanged since March) was the cause of his cough and he said ABSOLUTELY - NO DOUBT ABOUT IT. He went on to say the airway is totally blocked in one area....
It's reassuring to know that he knows that without even knowing he had a bronchoscopy or saw a report 10 minutes earlier. For weeks he's been brushing the cough off as asthma or post nasal drip..Last week, Dr. C was to have gone over the PET SCAN results with us, but lost the report and hadn't looked at the films.... After that, we got the films, as we're gathering the required documents to take to Sloan-Kettering. Two days ago, Dr. Cs office called me and said that they called for the films and were told we had checked them out. She asked if we could drop them off at Dr. Cs office, as he wanted to go over them with us today. I took them yesterday, but he didn't even mention the films nor the report today, either!!
Upswing of today's visit - all blood counts were back to normal and NO MORE PROCRIT!!! Just more frustrations...........
We're going to Sloan on September 15 and are on a cancellation call list, too. We're also going to try to see another oncologist here before going to Sloan.... September 15 seems so far away when time is so crucial.
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Hi all. Saw Connie yesterday. Talked with her today. Still having problems with pain. Has not been able to go to Rehab. Doctor order more tests on her - CT of chest today looking to see if there is another problem or not. Still needs Oxygen. I'll try to keep you posted. Donna
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Sending prayers up right now. Donna G
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Great news! We should be grateful. Donna G
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Sorry about that liver, but it is great that you have a plan. I agree with Sam , Have you asked about RFA? Donna G
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My mentor is a 16 yr lung cancer survivor. He had a Pancoast tumor like mine but it had got large enough that he had to have 3 ribs removed so I guess that would have bumped him up in staging. He is in his 70's . So I think you will out last him. Sounds like you are really getting the word out and are doing a great job at it. Thanks. Donna
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Maybe it should be" welcome / my story " so every one would know where to look . Of course that would be a huge ribbon now that we are >500 Donna
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A friend of mine sent this sites address to me . I liked it. Turn up your sound.
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My tumor in the apex of my right upper lung was a little bigger than a golf ball. It was NSCLC. They called it a pancoast tumor named after a Dr. that described symtoms from a tumor in that area. My mentor also had a pancoast tumor but his grew into his ribs also. They took 3 of his ribs. He said it slowed down his back swing, but improved his golf game. I don't know if that helps . O by the was John ( my mentor ) is now a 16 yr lung cancer survivor and still golfs. Donna
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Connie and I are playing phone tag today. I called at a bad time and she was to call back then it was getting time to get the dog walked before work and she called and left a message . She says she is a little better today. Still some pain where they took the chest tube out. At 2pm leaving for one hour of rehab . She also said she had got a shower in today and that felt good. If I get a break at work I'll try the phone tag game again. Sounds like good news on the whole Donna
Well I called Connie again at supper. She told me in rehab she did steps, something like a bike and some treadmill resting between each but they stopped because her O2 sats fell even with the O2 on. She had Maurie order her an electric bed for home through the american cancer society, it is free, she said you can get bedside commodes and a lot of things, if you have cancer that is. I will post again tomorrow. Good night. Donna
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Sounds good to me.!1
Congrats and keep it coming Donna -
Sorry about the radiation pneumonitis but the rest of the post sounded great especially the part about NO CANCER
Keep that news coming!! -
Hope your Dad has lots of fun and enjoys his visit with his brother. Pray that he continues to feel good.
Any body have any opinion?
We got a phone report of the biopsy results and they say Small Cell Intermediate Variety. I picked up all med records, CT & PET films and get the pathology slides tomorrow - all in preparation for Sloan. Yesterday, we were told that all his bloodwork was normal again and we were thrilled. When I got the results today, his red counts are still low, but not low enough for Procrit. Other values are still either high or low, so all wasn't normal again, but greatly improved. 
Has anyone else had a classification of Small Cell Intermediate Variety? Does this mean part small cell and part non-small cell? All mets except 2 in lymph nodes, liver and adrenal were gone after 2nd chemo cycle. The 3cm mass still present has been stable since April. Makes me think that all was Small Cell, except this mass and 2 nodes, which didn't respond to chemo like the other did. And those are non-small... STILL PRAYING FOR A MIRACLE!!
Steve said he had one YESTERDAY and Dr. N sent him a report. Just then, Dr. C was called to the desk and he put Steve's folder on the table, still opened to the page he was reading when he entered the room. Of course, we looked at it and it was the PULMONARY REPORT - dated TODAY! On top of it was a handwritten note from the pathologist that said that the specimens submitted were positive and in the process of being classified.
5 weeks into Recovery
in NSCLC GROUP
Posted
I am 5 yrs out and I still avoid that "appliance" . Guys are fortunate in that aspect. Donna