Jenny G.
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Posts posted by Jenny G.
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Question for Stephanie and Judysdaughter.....Are you both Judy Bs daughters? Trying to keep things straight.
Jenny
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I noticed too that there seems to be many on here with family members. This could be important research and in 10 years they only have 270+ signed up. Think what this might mean to our children..
Jenny
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The National Familial Lung Cancer Registry was established at The Johns Hopkins Medical Institutions in September 1993. The goals of the Registry are: 1) to further our understanding of the causes of lung cancer (beyond smoking), and 2) to serve as an educational resource for persons at risk for lung cancer. Over 270 lung cancer families are registered to date. So far, research with these families includes studies of DNA repair capacity and genetic markers and their relationship to environmental factors.
If two or more people in a family have been diagnosed with lung cancer, the family is eligible to be part of the Registry. Family members and patients can refer themselves to the National Familial Lung Cancer Registry, as well as those referred by physicians. Each patient/family referred will be sent a family medical and smoking history questionnaire. In addition we will need to obtain a consent to release medical records on family members with lung cancer. This will allow us to review the medical records and pathology slides of each affected family member to confirm all cases.
Family members who have participated in our study have written letters describing how lung cancer has affected their families and the families' experience with our research study. We urge persons from families in which more than one family member has had lung cancer to register their families.
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Norme,
I agree with how confusing this all is and I can't begin to understand all the medical terms. It's hard to get clear answers sometimes. I think I saw someone post about talking to the actual person that read the scans and getting clarification from them in layman's terms. That sounded like a great idea to me. We are paying for their services and yet I've never talked to any of them. Has anyone else done this?
Jenny
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I have been more hot than cold, but it fluctuates. My hands have been so warm they felt like heaters during the chemo. Now that my hair is gone again and the tempertures are falling, I could really feel the effects last night. The #1 thing you can do is to wear a hat. You lose a lot of body heat through your head, especially with no hair. Try a stocking cap for awhile and see if it helps. My radiologist just reminded me about that.
Jenny
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I have been more hot than cold, but it fluctuates. My hands have been so warm they felt like heaters during the chemo. Now that my hair is gone again and the tempertures are falling, I could really feel the effects last night. The #1 thing you can do is to wear a hat. You lose a lot of body heat through your head, especially with no hair. Try a stocking cap for awhile and see if it helps.
Jenny
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Look at the views vs. the replies. I'm sure there are hundreds more that never registered, but you'd think if they bothered to register, they would post. Personally, I've always been a pretty private person and leary of putting myself out there on the internet. I lurked for maybe a month before I got the courage to join in. This just seemed like such a comfortable group and everyone was so nice and now look, picture and all. Never thought I would do that. In any case, I know that all of you (us) talkers are giving much needed support to many who desperately need it and that's what's important.
Jenny
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Cathy,
Thank you for this info. I was able to order a copy of the program by clicking on the TV.
Jenny
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Norme,
I am so sorry to hear this news, but then your follow-up post sounds good. You are such an incredible woman. The support you give on this board is amazing even as you go through your own troubles. I am always impressed and inspired by your replies. I only hope that you can feel the love and support being retuned to you and Buddy. I care about you both.
Jenny
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It makes me so happy to read this today. Thank you for sharing. I hope the sun continues to shine for a very long time.
Jenny
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Sam,
I am so sorry for what you are going through. Please don't give up. I will be praying for you.
Jenny
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Hi,
I think if you are fired from a job because of performance, behavior, attendance, etc. problems, you do not get unemployment if the company contests it and wins. If you are laid off due to lack of work or fired for unjust reasons then you can collect if you win the hearing. If you decide to apply for disability then you would be saying that you cannot work and this would probably not help your case. Sounds like you definitely need an attorney. Anyway, welcome to the group and I wish you the best of luck.
Jenny
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Hi Berisa,
This is very interesting. I do not have the line, but my son (17) does. I'm sure that no one can resist checking when they read this so we can do our own study here. I have also heard that a crease in your ear lobe is a sign of heart disease I have this crease. Do you think that might come from Chinese medicine too or does everyone get this crease when they get older?
Jenny
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More on Ethyol (Amifostine) from another thread on this board:
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Thank you Cindy, this has been a real mystery area for me, I'm glad to get the info.
Jenny
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Dear Sally,
Try not to mourn your brother before he is gone. We all will die and none of us knows when that will be. Nothing has changed in that respect. Believe in miracles and treasure the time you have with all of your family with a new appreciation of how precious it is. I know it's easier said than done, but try not to let this disease take away your today's. Your brother will need you to be strong for him.
Jenny
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Hi Berisa,
I can tell you from my experience that they would not do more than the 6 rounds of chemo, my doctor considered that the maximum. I think it is just too toxic. I don't know how they proceed after that, maybe more is possible after a break. I did have an MRI of the brain before the PCI. If there was something already there, they would then give special attention to that as well as doing the whole brain, but maybe they consider it an extra step since they will do it all anyway and if there are no symptoms. I had to wait and have a PET scan after the CT to make sure the cancer was gone because the CT did show a small spot. It turned out to be scar tissue I guess, so we were able to proceed.
Jenny[/code]
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A free subscription is available to cancer patients and their caregivers and you can read on-line. Latest issue has good articles on lung cancer and supportive issues. Well worth a look.
I know this has been posted before, but for newcomers and those who can't keep up everyday, bear with me.
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Hi Joe,
I have heard positive things about them and one of our members has provided much detail concerning their treatment there. Another member went to the Block Cancer Center in IL and was very impressed with their thorough and complete care. I would definitely take a look there. Hope this is of some help. Best of luck.
Jenny
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I'm sure this is a stupid question, but I've seen many others in the same situation, where follow up chemo or radiation was not done after surgery, probably because it just wasn't the standard at the time. At what point does it become too late? What has changed since the original surgery? I guess no one would do these treatments on anyone with no evidence of disease? There are many here who did not have this and are here years later and doing fine. Hope I don't offend, just curious if anyone else wondered or asked about this.
Jenny
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sorry, duplicate post
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Ok, devil's advocate here. Most of this is due to health care costs and insurance rules. Most doctor's won't order tests without symptoms because it isn't "recommended" and won't be paid even if a person is at risk. It has to be up to us to insist on these things and then be willing to pay out of pocket to have them done. Most people just don't think that way unless they have a good reason to be concerned. Also, by the time a problem shows up on an x-ray, it is usually advanced. Has anyone here ever had a CT ordered as a preventative tool by a doctor? What do you think the cost to our health insurance would be if this was routinely done for all smokers or anyone else that may be at risk? Even with smoking the odds just aren't that high. So it's a percentages thing and a purely economical one. Now I think people at risk should do this. Now I know that a chest x-ray may not be sufficient. I suggested a chest x-ray at my last physical and was told not necessary. I should have insisted to have it at my own expense, but didn't. Later, a chest x-ray done because of symptoms did find my cancer, but it was already the size of a fist and being that it was small cell, it may have not shown up at all on an earlier x-ray. I consider myself lucky, but I might have been luckier if I'd had a more pro-active doctor. The sad fact is that we cannot depend on our doctors to always do what is in our best interests and that we have to educate ourselves and take charge. Be vigilant and use your doctor as a tool, not the final authority. Bless us all!
Jenny
P.S. I did ask how long they thought the cancer had been there, months or years, and he thought months. Anyone else have info on how long cancer is usually present before detected? Very curious.
Questions?????
in SCLC GROUP
Posted
Hi Botley,
When I was first diagnosed, I had a CT scan, a brain MRI, and a bone scan. After the chemo and radiation I had another CT which showed a spot that they thought was probably scar tissue, it was then that a PET was done to be sure. Then I had the PCI. Now my doctor has ordered another CT of the chest and lower body, but I got a letter from my insurance co. today that says it was not approved. Probably because I just had the PET in Aug. Not sure where we'll go from here. I have to wonder why they just didn't do the PET in the first place instead of the CT. They probably only follow the CT with a PET if there is a question. The PET shows activity, I think. Oh yeah, also when my doc ordered this last CT he told me that the insurance won't pay all the cost of an MRI for SCLC. hmmm.
Jenny