Donna G

Steve and I certainly appreciate all the input over my last post. You just reiterated our feelings on the situation of the untrustworthy "onc." We are making plans to go to Sloan Kettering in NYC. Any suggestions - do's & don'ts - favorite ONCs and not-so-favorites... ANYTHING that will assist us - please post. Would love to hear from anyone that has been there - we don't know what to expect form such a large facility. Will we be required to spend the night or have treatments on site, if needed... Or, if more chemo is required, will treatment be at our local Cancer Center? We WILL get through this........

My husband Jay and I went up to United Hosp. this evening and visited Connie she is looking better each day. Down to one IV in her hand , still has the chest tube but they may come out tomorrow! That PCA of dilaudid is helping with the pain. She was out walking around with the people from Cardiac Rehab. Her auto plumbing has been removed so she must get up now to deposit her liguid gold. She just picked at her supper. Wish she had more appetite or perhaps something other that hospital food. O well. She wanted me to say HI !! . Did you hear ? Perhaps I'll bring her food tomorrow and your messages. Donna Please continue to pray I know she is still having a hard time with the fact she has to go through all this again. FRIDAY SEE BELOW

Lord there seems so many of us here affected by lung cancer and yet we are only abour 2.8 % of those diagnosed this yr in the USA. We are a much smaller amount of those suffering all over the world. Please give us Wisdom. Wisdom of how to help each other, how we can reach out to others, how we can find a cure, relief for pain. Please Lord give us Comfort and Hope. Most of all your Peace.

My husband was diagnosed with SCLC in March 2003 and finished chemo July 18. In mid-April, the oncologist had told Steve after his 2nd round of chemo that he was in partial (75%) remission and after his 4th round, told him he was almost in full remission, and the only thing that kept him from saying 100% remission was one SLIGHTLY enlarged lymph node, but it was only less than 1/8" larger than normal. Steve asked him several times if he could see the Cat Scan film and the onc said that wasn't necessary because the films were clean - no evidence of cancer. We believed him until Steve saw the pulmonologist in May, for his worsening cough. He looked at the Cat Scan films and asked if Steve was undergoing chemo and Steve told him he was and the doctor said that there was still cancer present.. We were shocked... AND, we lost all faith in the oncologist. Also, Steve brought all this to the attention to the oncologist, who admitted that he hadn't even looked at the films!! He did, then, in front of us. The radiologist had even circled the cancer highlights. Steve's recent PET SCAN results confirmed that there is a cancerous small mass still present in the right lung, as well as some lymph nodes. The 3cm mass is what the oncologist was saying is "probably" just dried up blood vessels and dead cancer cells and he was just going to leave it at that assumption. I asked for a PET Scan and the first time he said he didn't think it was necessary, but after insistence, he agreed. Thank goodness because we now know there's still active cancer cells..... BUT there is no mention of restarting chemo. Steve had an appointment Wednesday with his oncologist, after his bloodwork. The purpose of this visit was for the onc to go over the PET SCAN results. We had a copy of the results, but had never been explained what they meant. The oncologist came into the room and began drawing pix, etc. which wasn't really related to Steve. He was stammering and talking in short phrases, sort of like he didn't know what to say and not doing well at ad libbing.... We both asked a few questions and he tried to answer, but wasn't clear. When I asked him more specifics he told us this: HONESTLY, I HAVE TO SAY THAT I DON'T REMEMBER WHAT THE PET SCAN RESULTS WERE AND I'VE SEEN 3 DIFFERENT COPIES OF THE REPORT BUT I DON'T KNOW WHERE ANY OF THEM ARE... I'VE LOST THEM!!!! I don't know why he didn't just pull the report up on the computer and print it... I surely would NOT have come to the consultation without them, when that was the focus of the meeting. Anyway - he told Steve that there was evidently live cancer and he was NOT going to continue chemo until the cancer starts GROWING! Steve's cough is terrible and getting worse all the time. The onc has "suggested" reasons for the cough - from asthma to post nasal drip...... When I asked again about the cough, he said, very nonchalantly, "well, there could be cancer in the air sacs" and went on to something else..... I asked if there was a way of knowing and he said NO. I asked if there could be another bronchoscopy procedure and he said NO and I asked why not and he said "Only if there's massive bleeding involved." I knew better, or at least thought differently. SO, we left there with no answers and in total frustration.... The pulmonologist (that did the bronchoscopy and biopsy in March) has an office on the next block. I pulled in there, asked Steve to get an appointment. He got the appointment for the next morning (yesterday.) The pulmonologist IS doing another bronchoscopy and a new biopsy THIS Tuesday!! He showed us the PET SCAN films (I had gotten the films and took them with us, so there would be no chance of them being LOST.) He thought Steve should have continued on chemo since there was live cancer. From all I've read, an X-Ray is the LEAST effective way to detecting lung cancer. Even when Steve was first diagnosed, he was thought to have pneumonia.. the cancer didn't show up on the X-ray. NOW, the oncologist said he would follow up with Steve monthly - and I asked if he would be having a CAT SCAN monthly and he said, "NO, JUST AN X-RAY!!" No way are we just settling for an X-Ray! When we saw the oncologist Wednesday, I asked about a tumor marker included in the bloodwork. He had a Tumor Marker (CEA) in March and again in May, but not since. He looked through his folder Wednesday and said he ordered one for that day. I asked if the results would be in with the CBC that day and he said NO - in a day or 2. This afternoon I called the Cancer Center and there WAS NO CEA ORDERED! His nurse looked at Steve's chart and the order is down for NEXT week!!! I can't believe the uncaring and incompetence when people's lives are at stake.........

My husband was diagnosed with SCLC in March 2003 and finished chemo July 18. In mid-April, the oncologist had told Steve after his 2nd round of chemo that he was in partial (75%) remission and after his 4th round, told him he was almost in full remission, and the only thing that kept him from saying 100% remission was one SLIGHTLY enlarged lymph node, but it was only less than 1/8" larger than normal. Steve asked him several times if he could see the Cat Scan film and the onc said that wasn't necessary because the films were clean - no evidence of cancer. We believed him until Steve saw the pulmonologist in May, for his worsening cough. He looked at the Cat Scan films and asked if Steve was undergoing chemo and Steve told him he was and the doctor said that there was still cancer present.. We were shocked... AND, we lost all faith in the oncologist. Also, Steve brought all this to the attention to the oncologist, who admitted that he hadn't even looked at the films!! He did, then, in front of us. The radiologist had even circled the cancer highlights. Steve's recent PET SCAN results confirmed that there is a cancerous small mass still present in the right lung, as well as some lymph nodes. The 3cm mass is what the oncologist was saying is "probably" just dried up blood vessels and dead cancer cells and he was just going to leave it at that assumption. I asked for a PET Scan and the first time he said he didn't think it was necessary, but after insistence, he agreed. Thank goodness because we now know there's still active cancer cells..... BUT there is no mention of restarting chemo. Steve had an appointment Wednesday with his oncologist, after his bloodwork. The purpose of this visit was for the onc to go over the PET SCAN results. We had a copy of the results, but had never been explained what they meant. The oncologist came into the room and began drawing pix, etc. which wasn't really related to Steve. He was stammering and talking in short phrases, sort of like he didn't know what to say and not doing well at ad libbing.... We both asked a few questions and he tried to answer, but wasn't clear. When I asked him more specifics he told us this: HONESTLY, I HAVE TO SAY THAT I DON'T REMEMBER WHAT THE PET SCAN RESULTS WERE AND I'VE SEEN 3 DIFFERENT COPIES OF THE REPORT BUT I DON'T KNOW WHERE ANY OF THEM ARE... I'VE LOST THEM!!!! I don't know why he didn't just pull the report up on the computer and print it... I surely would NOT have come to the consultation without them, when that was the focus of the meeting. Anyway - he told Steve that there was evidently live cancer and he was NOT going to continue chemo until the cancer starts GROWING! Steve's cough is terrible and getting worse all the time. The onc has "suggested" reasons for the cough - from asthma to post nasal drip...... When I asked again about the cough, he said, very nonchalantly, "well, there could be cancer in the air sacs" and went on to something else..... I asked if there was a way of knowing and he said NO. I asked if there could be another bronchoscopy procedure and he said NO and I asked why not and he said "Only if there's massive bleeding involved." I knew better, or at least thought differently. SO, we left there with no answers and in total frustration.... The pulmonologist (that did the bronchoscopy and biopsy in March) has an office on the next block. I pulled in there, asked Steve to get an appointment. He got the appointment for the next morning (yesterday.) The pulmonologist IS doing another bronchoscopy and a new biopsy THIS Tuesday!! He showed us the PET SCAN films (I had gotten the films and took them with us, so there would be no chance of them being LOST.) He thought Steve should have continued on chemo since there was live cancer. From all I've read, an X-Ray is the LEAST effective way to detecting lung cancer. Even when Steve was first diagnosed, he was thought to have pneumonia.. the cancer didn't show up on the X-ray. NOW, the oncologist said he would follow up with Steve monthly - and I asked if he would be having a CAT SCAN monthly and he said, "NO, JUST AN X-RAY!!" No way are we just settling for an X-Ray! When we saw the oncologist Wednesday, I asked about a tumor marker included in the bloodwork. He had a Tumor Marker (CEA) in March and again in May, but not since. He looked through his folder Wednesday and said he ordered one for that day. I asked if the results would be in with the CBC that day and he said NO - in a day or 2. This afternoon I called the Cancer Center and there WAS NO CEA ORDERED! His nurse looked at Steve's chart and the order is down for NEXT week!!! I can't believe the uncaring and incompetence when people's lives are at stake.........

Just got back from United Hospital and visiting with Connie. She said she was out of bed today and stood beside it while they changed the linen. She was sipping on chicken broth, jello, and sherbet. She is on telemetry ( portable heart monitor) and has an oximeter ( checks her oxygen saturation) and some oxygen by nasal canula. Of course she still has chest tube that so many of us know what that is all about. Her pain meds are not giving her much relief especially when she has to cough so they are going to set up a PCA of dilaudid. Today she was able to start reading all your messages, she LOVES THEM Maurie was reading to some to her and his just beamed when he read David P 's about Connie being a person he most admired When we were leaving she said " where are my messages, I want to read some more . They really made her so happy . I told her I 'll add more as they come. I am thinking we should start a new ribbon this one is getting slow to open Till tomorrow , ( after I get home from work) Thanks to all for your words of encouragement. Donna

Home from work , finally got through at the hospital, Connie is off Vent HURRAH . moved to 'special care " I am on my way to St Paul now , more to follow. Donna

I am sorry but my update today will be late , I am working at my hospital today, after I will go to United Hospital. As Connie is in ICU and can't "answer ' the phone, Maurie can't use his cell phone in the hospital etc. Donna

I went to Mass yesterday morning to offer up prayers for Connie and her physicians , our pastor Father Tim during his homily spoke exactly on that, our relationship with the father is not based on making deals. Must be a lesson we need to learn.

This news sounds worthy of the Good News column. Thanks for sharing

Today Connie went to surgery. The tumor in her lung was very far back and her surgeon was not able to remove it by a sternal incision. Because the lung was manipulated the surgeon felt it would be safer not to do the heart surgery today because she would have to be on Heparin. A new plan is being discussed. Of course Connie is on a vent , medicated for rest , in ICU . Hopefully tomorrow they will be able to take her off the vent and as she begins to heal we will learn what the new plan will be. Please PRAY PRAY PRAY. This is a rough day for Connie

How wonderful! You say he was fishing. Did he catch any red snapper. O that is yummy. He bikes too, any racing like David or will that be next year? Hope you had a great fish dinner! Thanks for sharing. Donna G

Connie we all want you to get well quick! I pray that all mends quickly , with all discomfort under control. We love your precious smile and generous hugs, words of wisdom, and kindness. Donna

We have had a Lung Cancer Awareness Event ( started by Connie) here in Minnesota in November and asked local papers to inerview us as people on the committee. You can find more about it at Alcase web site under events. ( 2001, 2002 ) Also the papers up in the twin cities have columns that they ask people to submit things as " pivotal life changing events" etc. I think 3 of us have gotten into that column. We also participate in local cancer events and wear our " Lung Cancer Survivor" shirts. Randy Shaver a local sports newscaster spoke at a celebration for cancer survivors ( he is a survivor) and we jumped up and told the camera man we wanted them to interview our table we signed the release and they did! ( of course we had our shirts on) We are trying.

Yeh it was posted 7/24

Cathy I am so sorry. May you find peace in such a difficult time.

Well last night our monthly evening lung cancer support group met ( we meet one afternoon a month also.) We got started at 6 pm and about quarter after who comes in the door? Connie with her husband, Maurie drove her ( you know him , he is the quiet guy in the picture!) Would you believe she said and I quote " this scares me because it scares all of you" She is worried about us! She also had had a new CT Pet Scan and brought info and told us it was the latest and greatest and wanted us to take advantage. Only 3 in Minnesota , Maplewood, Regions Hosp and at Mayo Clinic in Rochester. We all checked in ( told how we were , what is going on, etc ) and Connie also. I told Connie I had to give her 544 hugs one from each on the lung cancer survivor board,( hope you don't mind) Believe me lots of (((((((((((((Connie)))))))))))))))))was going on. Today as I told you she has her Coronary Angiogram , reguesting lots of prayer that the Dr. get all the info they need so surgery tomorrow goes smoothly. More info on Pet at http://www.stpaulradiology.com OK everyone "Let us pray" thanks Donna

Please look under Spirituall I will try to keep you updated about Connie Donna

I took Cisplatin and VP16. Toward the end of my treatment I started falling down. Out walking the dog and one day I stepped from the paved path in the park to the grass and landed on my derrier! One evening I was going down to the basement and proceeded to slip down the stairs! I mentioned this to my onocologist and he immediately said it was the cisplatin, so I never got the last dose. I went to a neurologist and had tests done . I was told I had some neuropathy in my hands ( I never really noticed) and in my feet and lower legs , it might clear after a while or might be permanent. I also wiggle my feet a lot, the Dr said it was because they were "searching for info" My feet hate to change shoes or to be bearfoot!!! 5 yrs later they are still weird but I don't fall down any more, most of the time I forget about it best of all I am here to talk about it. Best wishes Donna

Sally, it takes some time to learn your way around this site but you are young so will pick up quicker. Ask Rick under technical any particular questions he comes up with the answers. So you are in Ireland, the land of my ancestors. You say your brother smoked for a couple of years, I am very glad he quit for that fact alone increases his survival. I can not believe however that 2 yrs of smoking caused a tumor that has probably been lurking there that long. I have been told that it takes a while for them to grow large enough to be found. Sounds like the tumor is in a main bronchi. Has he had a CT to check on the response to the treatment? Is it shrinking? Do they plan surgery? What tests has he had to be sure it has not spread elsewhere? I guess thats enough questions for now. Is it as hot in Ireland as the rest of Europe? ( Oops that was another one!) Please keep us informed you have joined our family now. Your brother is in my prayers. Donna

Wow that was more than an hour long. Thanks for telling us about it. One comment at the end I never knew was ----"in victims over 65 yrs old only 1/4th recieve any treatment". That was just after they said that 1/2 of all lung cancer patients are over 68. No wonder why the stats are depressing!!!!!!! 1/2 would be about 90,000 people and 1/4 of them would be only 22,500 getting treatment and 67,000 getting no treatment! Why are so many getting no treatment!! I really wish we could hear more from that Lynne Robertson from the UK. She said we need to band together to change the public perception as they did for Breast Cancer and Aides. Talked about the Roy Castle Lung Cancer Foundation and the Global Lung Cancer Coalition. She felt that we need to get the media to print our stories. Connie has been working on us to do that here in Minnesota for the past 3 yrs. Many in our small group have gotten printed up in our local papers and some in the twin cities papers. It is a start, lots more work needed. Perhaps this should be under advocacy. Would n't it be something if all 500 + of us got into our local paper for Lung Cancer awareness month -November!!! Just a thought

Connie is going through more tests and her cardiologist Doctor visit today in preparation for her surgery on Thursday. I pray all goes well and that Connie feels peace and rest to get ready for the "battle" ahead. Update Just called United to get Connie's room number and I also got Connie Berchem. They had just put her to bed , she passed the angiogram with "flying colors" She wanted you to know. She also should have a good view she is on the 8th floor. This afternoon she will also have a Carotid ultrasound just to be checking all out before her surgery tomorrow. The address of United Hospital is 333 N Smith Ave, St Paul, Mn 55102 I also thought of starting a new "ribbon" that we could send our best wishes to her on. I could print it off tomorrow and bring it to her at the hospital , when she woke up she would have it . I think I will try under general. See you there. Donna

So sorry to hear that your brother has lung cancer. We have at least 3 people on the board that are very young. Jodi was diagnosed with Mesothelioma at 26, Jay is in his teens and is post op and had chemo, David P was diagnosed at 20 and he is 46 yrs old now! He is a hero! He has one lung and is entered in a bike race! ( hence the picture of him biking on his posts. ) Please share more details and we will try to help. Do you live here in the USA? Waiting to hear from you. Donna

Welcome Andrea. I hope we will be of help to you. Would you want to share what type of lung cancer your Mom has? What kind of treatments she has had or what is planned? The cough syrups over the counter in the drug store do not have codiene. Are you trying to help her cough something up in order to cut the amount of coughing or do you think you want to stop the coughing? Is her throat dry? Is she well hydrated? Any fever? Is the Dr. aware that she is coughing a lot? I sure have lots of questions , don't I. O yes what color if she is coughing something up? If it is clear should be oK but if otherwise it needs to come up and perhaps she needs her Dr to know what is coming up. O well don't want to scare you away so we will wait for your reply. Again- Welcome Donna

I agree, great news. Thanks so much for sharing it and your healing insights.