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I think it's what people don't say that says it all. Many people act like they want to run away from me! They say "you don't look sick." I say "well, you know, you can't judge a book by its cover!" There
Barb
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10/31/05 - coughed up blood;went to EM, admitted to hospital;many tests including bronoscopy and pet scan confirmed diagnosis of nsclc.
1l/27/04, Surgery done to remove middle lobe and part of upper lobe right lung; was told stage la nslc, bronchoalveolar type. No chemo or radiation recommended.
Sent home on oxygen after 8 days in hospital.
2/04 - xray scan NED
6/04 - xray scan NED
6/30 - CAT SCAN - waiting for results on 7/7/05.
Have had problems since surgery such as:
Radiating pain up and down the outside of legs from hip to calf,burning of feet; swollen leg; excessive heartburn, bleeding gums, pain in hips and rectum area,cyst on thumb, red and flushed face and neck; nausea, dizziness, coughed up blood twice. All of the above has been addressed with doctors as follows,and told not of significance concerning lung cancer.
Primary care physician - who is an internist, 2 other internists; family doctor, Surgeon who did lung cancer surgery,2 Pulmonologists (regular and 2nd opinion,Orthopaedist,Neurusurgeon,Dentist,ENT.,Colerectal specialist,Accupuncturist,PhysicalTherapist,General Medical Doctor specializing in lumbar epideral steroid injections (had 2 so far).
I have had: lung cancer surgery, thumb surgery, dental surgery, one sacroiliac joint shot, 2 lumbar epidural steroid shots, accupuncture, xrays, cat scans, MRI of spine, bone scan, and ent checkup which resulted in a diagnosis of acid reflux.
Was told by surgeon that he removed part of one of my ribs "which was in his way" when he did surgery.
7-06 - Chest Xray - NED - Pulmonologist said I was "CURED"
11-06 - two-year anniversary from surgery; did chest xray - said "evidence of recurrent cancer."
Rest of November and December 2006:
Did cat scan - said metastatic cancer several places;
Did PET SCAN - lit me up like a Xmas tree
Did bronchoscope - unable to get tissue for biopsy
Did Mediastinoscopy surgery - took scrapings for biopsy; sent to pathologist; first part said negative; second part said waiting on slides
Results of slide said cancer - NOT NONSMAL......NOT RECURRENT....BUT new cancer called oat cell or SMALL CELL cell; mass in spine, and two in right lung close to area of surgery
This whole situation was unreal; finally got a diagnosis;
Went to oncologist; he ordered MRI of chest and of stomach and back, with and without contrast;
Results confirmed results of biopsy.
Onc went over treatment plan, which will be one per week for three weeks; one week off; repeat until two months; then will scan and see what's going on.
Had surgery again to put port in upper chest area to house the chemo
Onc said may do radiation after two months
Had first chemo treatment; first couple days no problem; after that, moderate nausea and tiredness;
12-28-06 - Second chemo treatment; drew blood, etc., am anemic, gave shot for that; so far, just very tired and some nausea;gave me antinausea medicine
2/13/07: Had 7th chemo treatment and change in medicine because other is not compatible with radiation and must have radiation on spine and other areas where thickening is and could recur there (I think that was what the onc said).
Scan results were good but not NED. Most tumors either gone or only thickening or shrunk except for spine which must be treated with radiation as does the other areas even though improved or gone.
I didn't take the best notes in the world or remember all he said because I was a nervous wreck to the point where even the onc asked me if I was nervous and I said yes, could I please take some notes and he waited a bit for me.
I go to chemo treatment again today and tomorrow, and for a shot to increase my white blood counts.
Waiting to see how all this comes out.
January 2007 to April 10, 2007
Have had severe side effects of chemo and radiation. Have had several shots for red cells and white cells; severe nausea,vomiting, trouble swallowing; had blood transfusion 2 pints; and iv liquids for dehydration. Also have really bad cough
Since last update, I have been through chemo, radiation to lung and then to brain as a precaution the doctor said. The radiation to my chest caused my esophagus to BURN REAL BAD, but doctor said was not burn but don't understand what he meant. I could not swallow, and even normal breathing was painful. Took the crap that numbs your throat, but instead of pain, I gagged and vomited, so had to dicontinue that. Meanwhile had dehydration and hospital for treatment; then low blood counts which ended up requiring a 2 pints blood transfusion. Meanwhile had and still have real bad cough; severe headaches when cough; doctor did not explain why and I don't understand why; coughing up green mucus which means infection; taking antibiotics for that; cough still bad; weakness and sometimes feel like I'm going to pass out, but so far have not. Taking all medicines doctors gave me.
Was supposed to go get a CAT SCAN OF BRAIN AND PET SCAN today but could not do so because of cough and infection and headaches; rescnheduled for next tuesday, hope ready by then.
Last scan showed "mass" on my left lung, which doctor said was {puzzling), because it is not in his opinion something that looks like small cell; remember I had non small cell originally; then this last one was small cell, and so now I HAVE A THIRD LUNG CANCER, can you believe this?:
Thanks for all your prayers and support. This is a wonderful place to come to for comfort and support.
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(This, of course, was the same man who when he first saw me told me that I have a very aggressive cancer and it will be back). Yeah Dr., thanks for the vote of confidence, again!
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