Don M
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Posts posted by Don M
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Lisa: I am glad there is no change and I hope the pain has gone away. I am sorry you have to watch another family member deal with this.
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I am glad to see your post Debi. I have always enjoyed them. I have another xray tomorrow. I never worry about it until about 5 minutes before I see my oncologist. I try to relax just before they take my blood pressure and it is always high. I know it is usually normal because I have have had it checked in between visits.
It has been just over a year since my surgery. I definitely appreciate life a lot more now. Not infrequently when I walk into my office I cheerfully announce that I am still alive. And my coworkers say "and we are glad you are".
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Cheryl: I don't have any experience with mets and cannot offer advice from experience but I will pray for you.
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Cathy: Please accept my condolences.
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You are welcome Paula.
If I had a tumor that grew a cm in a month before surgery I think I would try everything too. My tumor stayed the same size in the month I had to wait for my surgery. My surgeon remarked that I had "a well behaved tumor" so I am going to rely on a surgical cure without chemo except that I do take selenium and other supplements to ehance my immune system. I did not want to do chemo. It is kind of a crap shoot, but I expect that I won't have a recurrence. It has been almost a year now since my surgery and I am still cancer free.
There are other places besides Swedish doing this trial across the country, but I can't remember where. you could find them if you browse around a bit. I hope you nail the beast and have NO RECURRENCE.
Don M
PS I will cut and paste an email I had with Swedish contact person. Maybe it will help you get in touch with them.
Here is the email address I used to contact. A different person responded, but her phone number is as the bottom of the email.
From Jill Cooper reply follows:
Mr. Miniken:
It sounds as if you might be eligible for this study, but I certainly understand your hesitation about the frequency of visits and "injecting cancer cells" into your body.
To address the visit issue, to participate you would need to come in for a screening visit, every two weeks x 5, three weeks after that, and then every 6 months for lab work and evaluation along with the injections.
To address the second issue, this is not a vaccine made from tumor cells. It is made by connecting a gene that recognizes a protein that exists in cancer cells to a vector. In the case of the first two of the series of vaccines it is attached to a plasmid vector. The second two vaccines are attached to an adenovirus vector. These vectors "show" the gene with the protein recognizer to your own immune system to try to teach your T cells to recognize the protein and kill it.
As far as your question about whether it works, this is a Phase I study, meaning this is its first trial with human beings. In mouse and monkey models the vaccinations have proven to be effective, and the in vitro studies have shown sensitization of the T cells to the tumor protein.
We are currently enrolling in Cohort 3 for the study; this means that in the first two cohorts patients tolerated the dose of vaccine without any problem. This is the last cohort, and thus the highest dose planned by the study team. It is too soon to tell about efficacy with human beings, and even if I knew that information for this study I couldn't tell you. Other companies have been having success with vaccine-type studies for lung cancer, and there is excitement in the medical community about these types of approaches in general.
I hope this answers your questions. If you decide you have interest in participating in this study please let me know. We would be happy to have you as a patient and begin the screening process.
Regards,
Jill Cooper RN BSN BS
Clinical Research Nurse
Swedish Cancer Institute
206-386-6923
It is interesting to note that it has been nearly a year since I had surgery and they still consider me a candidate.
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There are trials going on to train one's immune system to recognize leftover cancer cells following surgery and kill them. It involves receiving shots of vaccine derived from cancer cell material ( I think). They use recombinant dna as a vector for one shot and cold virus as a vector for another shot. I guess the idea is for this stuff to go into your body and act as practice targets for your immune system. Here are some links.
http://patient.cancerconsultants.com/lu ... x?id=31275
http://www.swedish.org/body.cfm?id=111& ... il&ref=486
They are accepting candidates at Swedish Hospital which is not too far from where I live, but I think I will stick with my selenium. I am curious as to whether any of you would consider applying for this trial.
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I am sorry you are having a hard time Melinda. I hope things smooth out for you .
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Lisa: I am glad you have your family with you. I hope you get to see the third doc. I know you have been having a real hard time.. and all that has happened to you is real.. I hope you get some peace ..but whata story!
Maybe you could get a book of poems by Rumi and read it to your husband. Hopefully your inlaws would have the good grace to be quiet.
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I take selenium and other supplements daily. I have read that one brazil nut contains 50 mg of selenium. The soil there is rich in selenium. My oncologist encourages my supplement regime. I eat a lot of brazil nuts.
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Good news! If your Steve can do it, others can too.
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I think you may be caught in the holday season. I had to wait for a month to get my surgery between Dec 1 when a PET scan confirmed my 3x5 cm tumor till Jan 2. Everyone was down for holidays. I was very impatient. ha ha an impatient patient.
Still, if you are in a lot of pain, you should try to find another doc.
I am curious why there is to be a follow up ct scan. Didn't the first one set off enough alarm bells? After my initial and only ct, the next step was for the pulmonologist to do a bronchoscopy. Then, I had a lung needle biopsy. Neither one of the tests were positive. A PET scan finally confimed it as cancer. I don't know, maybe the structures in your lung are too small for the kind of biopsies I had. Maybe you should ask for a PET scan? I hope you get answers soon.
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Cindy: I know how you feel. My family doc talked me into (her exact words were, "Don, I am begging you" ) doing something about the suspicious mass in my left lung. I did, although I was skeptical and somewhat in denial during the whole process. I am glad I listened to her and I would miss her if she went away. An earlier abdominal scan had shown what could could be a loop of intestine, an image artifact, or a pulmonary nodule at the bottom of my left lung. I did a full chest scan at her urging a few months later and the mass was found in my upper left lobe. From that point on it was a surreal experience for me.
I hope you find another good doc.
Don M
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Paula: congrats on your passing through the surgery event. It soumds like you are on the road to recovery. I pushed the envelope on my recovery and I think it helped with my lung capacity after the operation. I never had chemo, but Iam sure they will wnat you to heal before you do chemo. Maybe in 3 months.
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thanks you all.
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It was October 31, 2003, when a “lung mass” was discovered in my left upper lobe. Since then I have had the lobe removed and 3 checkups. My last checkup was deemed “cancer free” by my oncologist. It almost seems like a ritual where the onc is a medical high priest, and I attend the ritual for his blessing, "I pronounce you cancer free". I pretty much do just fine until the day of my checkup. Then, I have several passing fear moments and go through several what if scenarios. My blood pressure has been high the last 3 checkups. At my last checkup, I had sat in the waiting room for 20 minutes practicing deep breathing in an attempt to bring myslef down so that my blood pressure would be normal. It did not work. I know my blood pressure is usually normal because I have had it checked in between onc visits. Anyway, I was cancer free, and felt lighhearted as I walked out of the doctor's office, humming and singing to myself, "cancer free, cancer free".
I thought after I had the surgery I could forget all about it and go on with my life. Soon after I got out of the hospital, a friend of mine from work was diagnosed with lung cancer. I will always remember the moment when he came up to me and asked, “ How did you do it?” Of course, what he meant was how did I cope with having lung cancer. So, I told him about my coping methods and my experience.
Up to this point I had decided to not visit the lc message boards and whatnot so that I could forget about my experience and go on. But what with my friend getting lung cancer, and because I was reminded every 3 months at my checkup that I had had lung cancer, I decided to come back to the forums and read and partake a bit. My friend had mets to the brain and was inoperable, but I would still glean what I could from the various sites and pass it on to him. He never found out about his cancer until he had a seizure. Because of the seizure, he experienced short-term memory loss, and found it difficult to get much done on line. Anyway, I would email him and tell him about stuff. He was a casual acquaintance really, he worked in a different office about a 3-hour drive away, but we became closer after he found out about his lung cancer. He died 2 weeks ago. He was a good guy and I will miss him.
I continue to visit the message boards and will keep on. I read them every day.
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Hi Debi: I am not sure what kind of mask you tried. I have never tried a mask and so have not had a reaction. Have you tried an Occupational Safety and Health Administration( OSHA) approved respirator? Maybe you could have an air purifier temporarily installed and not even need a mask. Your employer is obligated to provide a safe working environment for you. Look in to the air purifier thing. The link is to an OSHA site. I think the situation you describe at your worksite would be unhealthy for anyone, not just lung canceer surviors.
Don M
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Hi Rich: I never had adjuvant chemo. So far, I don’t regret it. I would never discourage anyone to try it. I have had 3 checkups so far, and all is ok. I have been taking supplements in lieu of chemo. They are selenium, vitamin E, vitamin C, green leaf tea and CQ-10. I don’t know if they actually do any good, but I take them anyway and believe that they do. There are several ongoing studies of selenium use for follow up treatment of early stage lung cancer. When I saw my oncologist for the first time, I told him I was leaning towards not doing chemo because the benefits would be marginal and there was a risk in using the chemo. My oncologist agreed that using supplements in my situation instead of chemo was a prudent and reasonable course to follow, so I am doing it.
You might talk to your oncologist about supplements. I hope you get the back and joint pain managed effectively. Can you walk a lot? I think what helped me the most was walking. Good luck Rich.
Don M
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You are a great writer David. Good Guck with your chemo.
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Hey Fay benign is a good word. I remember how much I wanted to hear that word about a year ago. I hope your liver problem is resoved without surgery.
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Debi: Maybe you could live with the fear if you just let it wash over you and go away. It is kind of like a storm that lasts for a while and then ends. If you could just somehow let yourself be afraid, acknowledge it, and not worry about the fear, you kind of objectify it and it goes away. Anyway, I hope you get through it. You have my best wishes and prayers.
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Hey yay!
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Kim: please accept my condolences. I will pray for your dad.
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Charlotte: I am praying for your husband and you and family.
Update - any post-lobectomy advice?
in NSCLC GROUP
Posted
Congratulations on the good outcome. I did not know eirher the extent of my cancer when I went in to surgery but had the best possible outcome as your dad did. As others have said, the coughling, the walking, and the spirometer use are important. I hope your dad has a speedy recovery.