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Stage IV, on oxygen, chemo, radiation

keverdon
Posts: 1
Joined: May 2006

Hi

My cousin's husband has been recently diagnosed with Stage IV non-small cell (squamous cell) lung cancer in his right lung that has spread to lymph nodes near his throat and down his breastbone, and to one of his adrenal glands, and to the bone in his right shoulder, but NOT in any major organs yet nor in his brain. He also has complications of having a pacemaker/defibulator from a previous heart attack 4 years ago. He is only age 64. he smoked moderately (a pack or less a day and never in his home) since he was age 20, and finally quit altogether since his heart attack 4 years ago. He also worked in the boiler area in the Navy for a number of years in the early 1960's so we don't know if he was exposed to asbestos also, and perhaps through his job of working as head of maintenance in a local school district and doing construction and re-modelling.

His oncologist decided NOT to do any radiation supposedly since they would have to radiate all sites and he said that that much radiation would kill him faster than the cancer would. So the dr wanted to start him out on chemo (carboplatin and Taxol). The Wed. morning he was scheduled for his 1st treatment, he was having extreme difficulty in breathing and was coughing hard constantly, but he went to the apptmt anyway. They did chest X-ray there in dr's office to make sure lung hadn't collapsed (luckily it hadn't), then put him on oxygen, did the chemo treatment,and sent him home with an inhaler and some medication for it for bronchitis/asthma.

The coughing continued now with a yellowy stuff that was coming up, inhaler seemed to do no good, he got dizzy, and fell twice. We called the dr's office finally on Friday morning to see what should be done, plus had a bunch of questions to ask since the first dr apptment on a Monday when we 1st learned of the diagnosis of lung cancer (and then to have 1st chemo 2 days later on a Wed))when cancer dr had just spent 15 minutes with us, gave us the bad news, offered us no further info or advice about the disease (not even at what stage- luckily we had already done some research on lung cancer and knew to ask this busy dr what stage it was at otherwise we wouldn't have realized how serious this was) other than start chemo right away and that hopefully would put him into remission. The dr did turn us over to one of his nurses, but all she did was give us a packet of materials to read, most of which dealt with the side effects of the chemo, one small brochure about nutrition,etc) and told us that we could their office 24 hours a day if we had any questions. This oncologist's office also has bowls of candy sitting around for all of their cancer patients to munch on while they are getting their chemo treatments, which I found rather strange since everything I had been reading said that the cancer cells feed on sugar and glucose and grow that much faster with that nourishment. This cancer doctor and his office is supposed to be the best one in our area!

So when we finally called on Friday (diagnosis on Monday, 1st chemo on Wed, with problems breathing during that treatment, phone call on Friday of same week)the dr's office said when we called that don't worry about the dizziness and falling, he probably just got up too quickly from sitting, and that the nurse-practitioner would have to call us back about the continued coughing and to answer the questions that we now had, which she did not call until late Monday of the following week. By that time, we had had to take him to the emergency room on Sunday evening, they put on oxygen,and he was admitted to the hospital, and stayed there (under a different oncologist's care) until Friday. That hospital oncologist (who we all really liked, spent a lot of time explaining things but doesn't do private practice)was luckily in the hospital room once on Monday the day after he was admitted when my cousin's husband tried to sit up and get out of bed, and passed out briefly. The new dr got very concerned,they ran all kinds of tests (finally including an echocardiogram), and they ended up doing a thoracentesis to drain over a liter of fluid from his right lung. Also, that new dr said that the tumor in his lung was pressing on his airway which was why he was having a hard time breathing, and that they needed to do radiation right away on the tumor in his lung to try to shrink it since the chemo wouldn't work fast enough. The first oncologist was NOT happy with the decision to do radiation, but the hospital oncologist prevailed, and the husband started radiation, 3 times while in the hospital and 5 days a week as outpatient. They also set him up with a home oxygen unit and portable ones that he travels with.

However, they've had to drain the lung again less than 2 weeks later, and this time got over 2 liters of fluid out, and found fluid in his other lung, and he passed out again during the lung draining procedure. The technician who did the draining wanted him admitted back to hospital after that, but the nurse-practitioner at the original cancer dr's office said no, to just send him home, although the hospital technician was clearly unhappy with that decision. The husband is very trusting of doctors, and doesn't like being in the hospital, so he says that the doctor knows best, and that we just blindly go along with what they say.

The husband now has swelling of ankles and feet, and abdominal area, still on home oxygen, is NOT eating (altho he does eat while in the hospital). He started chemo again while still getting 5 times week radiation, but to have 3 treatments spread out over 3 weeks. He has his 1st new chemo treatment of the 3, then had to go straight from there to have his lung drained for the 2nd time as we mentioned above. He was scheduled to have his 2nd of 3 chemo treatments, but his blood counts were too low, so they sent him to the hospital to have a blood transfusion. It took so long to cross-type his blood for the 2 units that they wanted to give him that he ended up staying overnight. The hospital nurses were very concerned about the continued swelling in his legs and elsewhere (altho luckily no blood clots have been found), and finally at 2:00 in the morning, called the original dr's office to try to get an order to prescribe Lasik, the hospital called that dr's office twice, but never got a call back, so they went ahead and had a dr on call in the oncology ward whre he was staying while they did the transfusion prescribe that for him, which helped eliminate a lot of water although it is all back again 2 days later at home. No prescription for Lasik was sent home with him. We finally talked him in to having a visiting nurse come by a couple of times a week, which so far has only been twice that she has come, but at least she can monitor his blood pressure, listed to his lungs and heart, and watch out for any dire warning signs.

Our questions for anyone on this network are regarding the oxygen. Is it possible that he, with being in a Stage IV and with his other symptons as decribed here, can be gotten off the oxygen so that we can try to find him treatment farther away from home(since he is limited by having the portable oxygen only last about 2 hours and he is very weak and is difficult for him to travel). We have heard that he cannot travel by air on a regular airline while he was on oxygen. We are hesitant to ask the original cancer dr about this since we feel that we should at least try to finish this 1st round of chemo, try to get him stronger so that we can then perhaps pursue other possible places for treatment, even perhaps going down to the Bahamas for the Dr. Burton's immune augmentation treatment, or to the cancer treatment center in Tulsa or Chicago (he lives in northern Indiana but Chicago is still over 2 hours away by car).

Any advice, encouragement or sympathy appreciated!!

ernrol's picture
ernrol
Posts: 91
Joined: Apr 2006

I had stage IV lung cancer with fluid between lung and chest wall. I have been in remission since November 2005. I had a PET scan on May 18th and no cancer. I have posted my story in hopes that others will benefit from the things that I did. You can get to the story by typing ernrol in the search box at the top of the screen or by typing "life is great" in the word phrase section of the web page search. After reading my story let me know if I can be of any help. For air transportation I suggest you contact Angle Flights go to this web site and scroll down to the Angle Flight contact for your state. I am presently trying to get my medical back so I can do Angle Flights.
Ernie

ernrol's picture
ernrol
Posts: 91
Joined: Apr 2006

I forgot to give you the web site address.

http:angelflight.org/flights

Go to request a Flight, service area, scroll down till you see your state.

Ernie

stage5survivor
Posts: 4
Joined: Feb 2006

StageIV from the outset. 11/30/99 MRI of brain, after focal seizure, revealed egg-sized mass over optic chiasma, further W/U chest CT revealed 1 cm mass LUL.
My case is simply astonishing, cancer-free since 11/2000.
6 1/2 year survival since original Dx.
Today? Should lose 5-10 lbs

lynnrhsu
Posts: 3
Joined: Jun 2004

Hi, so glad to hear such great news! What is the magic treatment?

Thanks,

Lynn

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