saying hi, Description and a few questions

[shelory]

Hello all,

First of all I have to thank you all for the bountiful information you guys have here, you taught me a lot.

I'm acting as a caretaker for my (26 year old) girlfriend who was diagnosed for ALK positive adenocarcinoma of the lung.

In May we discovered that her seven month cough was just a symptom for her lung cancer. We were told by her doctors for months that her cough was caused by varies diseases from Bronchiolitis to allergies, no one thought that a 26 year old could have anything serious as lung cancer, so she went through all sorts of treatments to no avail. Her doctors refused to let her take CT scans that would be able to determine a disease such as cancer and only allowed us to take simple X-ray scans that didn’t show anything (from what I understand only experts are able to notice that there could have been something there).

One day we got fed up and decided to go to an expert lung doctor that cost us lots of money, but it was money well spent. At first glance at the X-ray scans she said that she saw something and right away ordered a CT but didn’t mention cancer, after that everything went so fast. The CT scan saw lumps in her lung and the doctor right away ordered a bronchoscopy and a CT-PET. The results for both of the test indicated that she was at stage 4 adenocarcinoma of the lung with Metastases throughout her whole body. Lung, brain (after MRI scan), limp nodes and kidneys. We never thought that she would have cancer she was a healthy young girl and she fell into depression and indicated that she just wanted to die. Reading up about level 4 adenocarcinoma didn’t help her mood either, all they said was that she had a few months to years to live no matter what treatment she had. Most of the articles on the web are old and don’t mention the new medicines for lung cancer.

They started her treatment with radiation therapy (SRS-Stereotactic Radiosurgery) on the cancer tumors in her brain mainly because we wanted to conduct an oocyte cryopreservation (egg freezing) so she could have children in the Future. While in the process of preserving her eggs we sent the cancer cells taken by the bronchoscopy to be tested for mutations at a special testing facility (a process that takes a long time apparently) and it came back as ALK positive. The doctors then proscribed for her Xalkori (Crizotinib). Things are starting to look good, her last CT-PET and MRI showed no or little activity in her tumors and a huge reduction in her tumors (most have just disappeared).

I have a few questions.

1. I couldn't find any information about adenocarcinoma of the lung in young people my girlfriend's age. I was looking for cases and statistics for cases like hers and couldn't find any. Could you give me cases and statistics for people her age (26+-)

2. She is indicating that she thinks that she has hair loss, at first we thought that it could be because of the radiation therapy but now we think it could be because of the Xalkori because she got SRS-Stereotactic Radiosurgery and we were told that the hair loss would be local to the areas that were treated, that happened, but she is complaining that the hair loss is from her whole head.

3. She was getting high fevers 39-40 Celsius and the doctors didn’t really know why.

4. Every once and a while she starts coughing up blood, a few days ago was the worst case, she coughed up more than 5 cups of blood we then went to the hospital and they couldn't find the cause of the bleeding and kept her under supervision. It ended fairly quickly but it dos worry me the amount of blood.

[RandyW]

do not believe too much in any statistics.. just numbers to me..... as far as cases .. we do not have a lot here in that age group I do not think any how.... I do know of people outside of this site with similar diagnosis even younger than 26 though.... age doe not play faves with this disease.... have friends hopefully posting up to other questions and answers.... Have sen people with LC as young as 9 years old and now at 16 still fighting every day to keep going.... age on the older end is lot more common .... blood loss is definitely something to worry bout... remember that blood is energy and immune system and life also as well... that much loss should be replenished with transfusion i would think of course....