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hi, new member calling for info


Guest chillsey

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Guest chillsey

Hi,

Chillsey here, can anyone give me some advice for my mum who looks a younger 77 years old and has NSCLC?. She has total collapse of the left lung with a 3cm tumour blocking her airway. She has had 10 treatments of palliative radiotherapy nearly 8 weeks ago to control the symptoms of the tumour. The coughing of blood has stopped to a beigey mucus and now is sometimes pinkish or clear but her cough has become more progressive to a point that she developed a severe chest infection with 2 weeks of antibiotics.

Since then she has suffered regular shortness of breath, cough much worse at night and cannot go to bed and lay down as mucus collects on her chest and makes her cough uncontrollaby. I am waiting for an adjustable bed to arrive for her. She is very weak and is exhausted all the time and can walk no more than 10 yards without stopping, she refuses to go in a wheelchair. I know radiotherapy cannot work for everyone but are these symptoms normal and as she cannot sleep very well at night is taking all her energy up. She has been told she will need chemo and is awaiting another ct scan to see what the tumour is doing. I don't think she is strong enough to have chemo now, how long can she wait before it is too late to have it? Are these sypmtoms normal after radiotheraphy? Obviously it is worse as she only has her right lung. I'm praying she will slowly improve as she had better quality of life before the treatment. I feel her doctor doesn't support her because she is has been classed as terminally ill. She will soon have a respiritory nurse to assess her. I'm very stressed and worried for her but want to get her the best help and treatment I can.

Chillsey.

AUG 06- mum has pain left side of ribs, coughing blood,cough that never goes away, xray reveals left collapsed lung with retained fluid.

SEP 06- mum to have lung drained waits to dee doctor for it for 7 hours! After going back again 2 days later has the drain & was in a lot of pain.

FEB 07-changed hospitals broncosopy & ct scan done, 3cm tumour confirmed in left airway, lung still collapsed & damaged.Cancer not spread to major organs. Surgery not an option only palliative radiotherapy to control symptoms.

MAR 07-10 treatments of radiotherapy & given steroids for appetite. I'm told by consultant doing the mapping that "treatment only gives a dignified ending" & "mums lung is so badly collasped she thought it was removed" I went home and cried for days, nothing like kind words of support!!

MAR 07-mum very tired, gullet sore.Bleeding stopped to beige phlegm. Xray Check up at hosp showed some air getting in past tumour lung was not as white and cloudy as before.

APR 07-cough worsened & had severe chest infection, 2wks antibiotics given. Mum has stopped steroids as feels bloated & uncomfortable. Appetite decreasing again. Shortness of breath has worsened can only now walk 10 yards without stopping. Feels exhausted ALL the time. Urgent CT scan arranged to see what the tumour is doing, waiting time 4-5 WEEKS. I am sending her private hopefully will be done next week.

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Chillsey,

I'm so sorry you have to be here, but so glad you found us. I, too, have a 77 year-old mom with NSCLC. In fact, she also has a 3 cm tumor in her lung.

I can't answer your questions about the coughing and shortness of breath as, so far, Mom hasn't experience that yet. There are pleny of people here who will do their best to answer your questions with their experience.

It might be helpful if you could post information about your mom and her diagnosis in your profile. That way people will know better how to respond to your questions.

The first thing I suggest is to stop using the word "terminal" and to seek a doctor that will treat her aggressively, if that is what she wants. There are many people on this board who have had that word flung at them and I'm happy to say that they flung it right back and have exceeded all expectations.

Peace,

Susan

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Can the obstracting tumor be removed (at least partially) by a laser ? You can do that if the tumor is inside the airway. If it is outside you may ask whether a stent in the bronchus is a possibility. It is true that radiation does not always work.

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hi:

I wonder what stage your mom's cancer is? If all she has is the 3 cm tumor, she could have it treated with cyberknife and kill it. Visit this message board and speak to radiation oncologists there about your mom's situation.

http://www.cyberknifesupport.org/forum/

They can be very helpful and may be able to address the symptoms your mom is having now and can answer if she is a likely candidate for cyberknife. If you don't have cyberknife available these are still good guys to ask questions. Your mom might be able to have image-guided radiation to treat the tumor, but if she has already had recent radiation, maybe she cannot have more. The docs at the cyberknife site should be able to address reirradiation too. You can always treat a previously radiated site with cyberknife. The majority of cyberknife patients are elderly persons who can't have conventional surgery.

You can also go to Dr.West's site to ask about the treatment and symptoms:

http://www.onctalk.com/bbPress/

I hope you mom gets some relief soon. I have a large tumor in my remaining right lung, and I have noticed a lot more mucous and coughing, I think it must be tumor related. I hope to have it killed with cyberknife.

Don M

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Guest chillsey
"wiesia"]Can the obstracting tumor be removed (at least partially) by a laser ? You can do that if the tumor is inside the airway. If it is outside you may ask whether a stent in the bronchus is a possibility. It is true that radiation does not always work.

Thanks for your help Wiesia, I will certainly ask these questions to her oncologist.

So sorry for the loss of your father.

Chillsey.

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Welcome Chillsey,

I just wanted to welcome you and let you know that I am keeping you and your mum in my thoughts and prayers. Keep posting and keep us updated. These members are awesome!

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