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Donna G

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Posts posted by Donna G

  1. Tommy I hope you can use the new translation into Spainish option that we just got. It would make it a lot easier for you . You say you had surgery in January? So it has been 3 months. I imagine you had an open thorocotomy where they break a couple of ribs and cut into the nerves that run along those ribs. At this point I would guess that it is those nerves that are the problem. Please be sure also that you have good range of motion in the shoulder on the same side as the surgery. Some people guard so much right after surgery , trying not to move that they end up with a "frozen shoulder" that also could be a problem . An orthopedic doctor or physical therapist might be in order. For the nerve damage some people take antidepressents , they seem to help. Any one else have any Ideas? Also WELCOME TO THE MESSAGE BOARD. YOU ARE AMONG " AMIGOS."

  2. In Massachusetts I believe you can sell your house to your children for $1 but the state can still take it if it happened within 5 yrs of your death. meanwhile they owe taxes etc. My mother had to go through all her assets while she was in a nursing home before they would take over paying for her , that included selling her home. Believe me Medicare only pays a matter of months, then it is so expensive it does not take long for you to go through all your money. They only let her keep enough money to be buried.

  3. Hello John, I went to a thoracic onocology lecture last October given by the University of Minnesota. Dr. Michael Maddaus lectured on the "Current Status of the Molecular Substaging of NSCLC."

    The search for a more accurate means of staging is entering a new and exciting phase ushered in by advances in molecular approaches that have increased the capacity to detect metastatic disease through the use of oncogenes and other oncogenic factors. These molecular tools, which include immunohistochenical (IHC) and nucleic acid-based approaches, have strongly impacted our sensitivity of detection of micrometastatic. Small numbers of micrometastatic cells not previouly appreciated by routime pathological analysis can now routimely be identified in the lymph nodes, blood and bone marrow of surgically resected patients.

    When I asked him if these tests could some day be used as a screening tool , the cost etc he said perhaps , they are relatively inexpensive . The research right now is aimed at making more accurate staging because many are told they have neg. lymph nodes etc then 6 months down the road find out there was metastasis that could not be seen by the pathologist at the time they had surgery. With more accuracy they would know who needs chemo etc.

  4. Peter, did you have your surgery by VAT? (video assisted thorocotomy). I went to a thoracic onocology seminar recently and a thoracic surgeon spoke. He showed us a video of him taking out a whole lung through a tiny slit, - no big smiley incision. He said so far only a few surgeon know how to do it this way although most can do biopsies using VAT. The recovery time is much shorter , less complication, less permanent damage to nerves and ribs ( they do not have to break your ribs) He also said that it has to be someone who has not had radiation or chemo prior and the tumor has got to be easy to get at , not wrapped around something etc. But for those that fit the bill boy it is great. Well tell us ! Did you have surgery by VAT? Is that how you got over it so quick?

  5. Hello, I also had my right upper lobe removed and also found out in December but it was 5 yrs ago, and it was not as early as you for I had to have chemo, radiation then surgery then more chemo.

    EXERCISE is very important. I just went to an inservice by our thoracic surgeon who

    1. Did not want his patients to eat unless they were up in a chair.

    2. Wanted us to start range of motion of the affected shoulder on day 2

    3. Walk , Walk , Walk.

    No one told me any of this when I had my surgery and I believe I had needless problems with my shoulder because of this. One of the women in our group also had her husband taught to "knead" the incision line to keep the skin from scaring to the muscle, and also from binding up. I think with lotion gently moving it around back and forth. ( After the skin healed)

    Also water aerobics are suppose to be very good for you and it help build lung capacity.

  6. Just got the The news letter from the Univ. of Mn CME and they talk of offering a new study being done to use thalidomide with 2 other chemo drugs before surgery to shrink tumors. I wonder if it would help those of us who are not candidates for surgery to become candidates? If any one wants the address I can forward it to your Email. The address is very long to copy .

    When I started a "google " search I found they have done studies on small cell lung cancer that so far are very promising. If you remember it is the drug years ago given for first trimester nausea that caused babies to be born with limbs. They say it works on the tumors by cuting off blood supply. Perhaps it cut off blood supply to those rapidly developing arms and legs . Well none of us are pregnant and taking chemo so no worry but some of us have been nauseated so that might help there too.

  7. Judy, I also was fortunate to have my tumor picked up by a simple chest xray. The problem is however that people should not be led to believe if the chest xray is clean you are cancer free. If you have a very solid tumor it will show, but lung cancer is not always a solid tumor, so it does not show especially early which is what we need to survive. Chest xray for some is better than nothing but so many others will have lung cancer and I think will be worse off because they think that they are cancer free . We really need to push for the CT, the pet scan or the discovery of a new screening tool that is very effective in finding tumors .

  8. Remember we here on the board in the twin cities are waving a welcome to you as you pass south of us heading to Mayo . We are all anxious to hear how your appointments went and what the news is. Hope you get back to us soon with great news. :D:D:D

  9. I really don't think the majority of lung cancer patients are diagnosed in Stage I . If that were true then the "stats" of 90 % die within the yr that they are diagnosed would not be true. The majority of the time there are no early symptoms causing you to go to the doctor or would prompt the doctor to order tests as CT of the chest. We are back to what we all should know by now more people die of lung cancer than breast, colon or prostrate ( all of which have screening tools done to everyone) and lung cancer has no accepted screening test. Also 50 % of the people diagnosed with lung cancer do not smoke. Many never smoked. Many of us are begining the fight to educate the public about this . If you have been touched be this terrible disease or have a love one who is please join us.

  10. Hello, Adenocarcinoma is soon to be the leading type of lung cancer if it isn't already. Generally it is found "deep" in the lung as not in or around the bronchi. They say that it is taking over because of filtered cigarettes causing the smoker to inhale deeper to get nicotine. You did not mention if there was more than one tumor, is it touching the covering or pleura of the lung, has it spread outside of the lung, are there positive lymph nodes? Lots of questions right?

    I also want to say a special hello because I was born and raised in the Bay State. I graduated from nursing school at Boston City Hospital ( which went to a 4 yr program a few years later) I hope you don't have to deal with the traffic from the big dig.

    I had it touching the nerves and pleura in the very top of my right lung, I had Cisplatin, VP16 then after it shrunk I was able to have surgery then more chemo ( the same drugs) to be sure we zapped any loose cells. Do keep us posted. Donna

  11. That is a great link. It is a national study. They are also test here in Minnesota at the University . Same qualifications. Had my husband apply since he has smoked, is a military veteran, Worked ship yard with aspestos, etc etc and sadly because he had colon polyps they rejected him. He had his annual yesterday and I had sent him off with instructions to ask for a Pet Scan or Ct and he came home and said they did do a plain chest xray thats all. Any one fitting the requirements should take advantage of this study :D:D:D

  12. Last week I was at a conference of the twin cities thoracic onocology consortium. One of the speaker was a doctor from the U of M, a thoracic surgeon, who has learned to take out a lung by using just a scope. He says you DON'T touch the tumor for you don't won't any cells to break off !!!! He puts the tumor in a "plastic bag" then pulls it out the small slit he has made. NO BIG SMILEY INCISION . He can only do it if the tumor is in a place that is not complicated ( as not wrapped around something) and only if no scars as from chemo prior to surgery. But this is an alternative for some. and some don't have to have their ribs broken, have nerve damage from the incision etc. THEN HE SHOWED US A VIDEO OF HOW HE DID IT. fACINATING I would not have qualified for I had chemo and radiation before they would operate. Only a few doctors have the skills to do this so far. But some lucky people will have it and hopefully more in the future as more doctors are trained how to do it.

  13. I sent you an email. I am a 5 yr survivor of a Pancoast Tumor. It is a tumor in the apex of the lung , way up the top. It presses on vessels and nerves and caused weird symptoms. A Doctor named Pancoast described the symptoms or "syndrome" so they named tumors found in the apex of the lung after him "Pancoast Tumor"

  14. :My name is Donna I think I gave you the kleenex at the support group. Is this true? I am really happy that you came and thrilled you are on line with us also. I hope your husband soon will feel good enough to join us. So will Dale , and the guys enjoy having another male in the group. We women tend to look for support first but the guys need it just as much as we do. :D:D I hope to get to the meeting where we are having a guest speaker. Sounds great. Been thinking and praying for you. See you soon I hope Donna

  15. Fay,I had that site in my "favorites" but I hadn't been there for a while. Coming from Boston I was interested in the Harvard questioner re risk of lung cancer. Again, why do you suppose they mention "have you lived more than 10 years in a major city" as a risk factor. It has got to be refering to the polution from smoke stacks and traffic ( diesel being 200-300 times worse the gas) Thanks for sending us the info.

  16. :?: don't feel bad! I somehow got the typeing line that finally turned up at the bottom of the screen twice and I still don't know how I did it. Wish I could tell you . I told Dave I had problems getting on . People kept coming in the room and leaving without saying anything I figured they were having the same problem as I did . Once you have the place to type it is easy and fun. We will keep trying. Donna
  17. Hello TeeTee. I wanted to say that the oil fields in Lousiana put people at risk for lung cancer I read. If you search for info re the death of Kim Perrot, a young basketball player, an athlete, they discuss how growing up there exposed her to carcinogens. I was interested because I have lived in Slidell and Abita Springs. I knew there was a high risk for kidney cancer in New Orleans because of the exposure to the waters of the Mississipppi River but while there I didn't hear about the higher than average risk of lung cancer til I read these articles. We all need to band together for more research , prevention and early detection.

  18. Hello. Please go to www.startribune.com and scroll down to article on "Sunshine " ad by MPAAT (Minnesota Partners against tobacco) and see the deception they have in this ad. It promotes the stigma that all lung cancer victims caused it themselves, that if you quit you won't get lung cancer and all lung cancer victims smoked. I think for your general health it is great to quit smoking but it is mean to "educate " the public with inaccurate info . We need to get over this and get money to spend on early detection, prevention, and better cures, better staging etc .

    You can still see this article if you enter a search for "sunshine"

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