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Hi all, I have stage IV lung cancer and would welcome your help.

I have been looking for a support group where I can talk to others that are going through lung cancer and certain treatments to help me understand that I am doing the right thing.  I am very scared and hope that being a member here will indeed help me find answers and friends.  I have stage IV lung cancer.  I have a tumor on my left lung as well as a couple smaller tumors on my lympnodes in my left lung and the fluid in my left lung also has cancer cells.  Thus the stage IV I guess.  I am terrified and hope to see that there really are survivors of this type of cancer.  I would appreciate any advise or help any of you can give me.  I am 60 years old and would like to be around to see my grandchildren.  Please give me hope.......Thank you all. 

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Comment by FLCancerLady on June 9, 2012 at 6:18am

I was diagnosed with stage IV lung cancer last November. It metastasized to my brain and I had to have brain cancer. I've had radiation and 6 chemo treatments. I have been on Carboplatin, Aloxi, and Alimta. My last CT Scan showed the tumors have shrunken. There is hope out there with some great chemotherapy treatments. I am very scared too, and saddened by the thought I have stage IV cancer, but I am trying to do the best I can with treatment and be thankful and enjoy those around me. I wish you the best of luck with your treatment. Hang in there!!! 

Comment by Kelly- Nutrition on April 10, 2012 at 12:04pm

Hi jojoaunt.

I just wanted to pass along one suggestion. If you are appearing to take the clear liquids better than other food and beverages, you may want to check out the clear liquid drinks that are nutritional supplements- ie Boost Breeze and Ensure Enlive( may be only available online). That way you'd be getting some greater nutrition .

Also, there are nutritional items such as calorie boosters and protein boosters that you can add to the foods/beverages you can tolerate. They come in single serve packages( think single serve package of salad dressing) They are tasteless and can mix in many foods and beverages. They might be helpful/.
Again, probably need to purchase on line( Names such as Benecalorie, Prosource,etc).

It is ok to keep eating the foods you can tolerate over and over again. Think about how you might add calories to them- instead of trying to increase the volume, which most chemo/rad patients cannot do.

ie can you drink hot cocoa made with whole milk instead of just water? can you eat mashed potatoes made with whole milk and butter,etc.

Let me know if I can help. I am a Registered Dietitian working with many lung cancer patients undergoing chemo/rad. It is a most nervewracking experience but we are here to help you.

Take care.

Kelly O.

Comment by Margot on April 10, 2012 at 10:53am

jojoaunt-

Hang in there. It is temporary.  It will pass.  It probably lasted 3 weeks or so for me; I can't remember.  That's one of the blessings - leaving the bad memories behind.  I lost 25 lbs in 3 weeks.  Actually got into a size 6 for the first time in 20 years.

The broth will provide some nourishment. Try juicing or purees that are not acidic.  I believe I was also taking some prilosec or something like that for my stomach. 

You may also want to ask for some hydration if you are not getting enough fluids.  I was able to get this at the cancer center and they even ordered it for me at home on the weekend.  It helped boost me.

Margot

Comment by jojoaunt on April 8, 2012 at 11:55am

Margo, thank you.  The did give me a gargle but it only gives me more indigestion.  I am on the anti-anxiety meds also.  Nothing seems to be helping.  I will try the warm stuff.  Tea seems to be okay, I will do chicken broth and vegetable broth as well.  Jello is okay so far.  All of those things don't seem very nourishing but I don't know what else to do.  How long did this thing last for you?  Thank you for your suggestions.  I will try anything at this point.  That stabbing type pain in the middle of my chest is just brutal sometimes.....Thanks again.

Joanne

Comment by Margot on April 8, 2012 at 10:21am

jojoaunt -

It sounds similar to my issues after radiation.  The doc gave me something to drink or gargle that helped to get food down.  You may also want to ask for anti-anxiety med, so you can control your nervousness which only makes it more difficult to swallow.  You need to experiment with foods, even if they don't sound as healthy as you would normally eat.  Try Jello, energy drinks, homemade milkshake or pudding.  How about warm water with honey - does that work?  If yes, try some warm drinks rather than cold.  Chicken broth, vegetable broth.

Be sure to tell your doc or nurse practitioner about your difficulties. They can probably help you.

Margot

Comment by jojoaunt on April 8, 2012 at 12:16am

First, I think it is awesome that you are a 12 years survivor.  I am so so happy for you.  Thank you for the tips.  I thought it would go away after a few days but that is not happening.  I will stick to the bland foods but I even tried cold Carnation instant breakfast for the nutrients and I could not get that down either.......I'm so nervous that I'm not going to be able to eat anything soon.  I just want this to go away.  Thanks again for your help. 

Joanne

Comment by John H MOD on April 7, 2012 at 9:10pm
Hi JoJo, I am a 12 year survivor of NSCLC 3A. I remember the radiation and the burning from eating my tumor was in my right lung and high up. I know fruit isn't good because it has acid . Stay with bland food as much as you can. I remember that the effects from rad keeps working for a while after the process is done. Hopefully the further out you get it should get better. Cancer the disease that keeps on giving. Try some of the products like Ensure drinks. When cold that should help a lot.
John
Comment by jojoaunt on April 7, 2012 at 12:57pm

Hi again, I am having such a problem eating now.  I have stopped radiation but I think it has done a number on my esophagus.  Everytime I try to eat anything, it feels as though it gets stuck in the middle of my chest and burns like crazy like someone is stabbing me.  Does anyone else know of this feeling and how I can make it go away.  I am taking Pepcid but nothing is working.  I can barely get down baby Rice cereal.  I need to eat and just can't.  Pureed fruit is worse, I can't seem to get anything down without it feeling like it's getting stuck.  If anyone has any suggestions, please let me know, I am at my wits end and it's making me so upset.  Thank you all. 

Comment by jojoaunt on March 28, 2012 at 8:30pm

Margot and Amy, Thank you guys so much for the support group information.  I will check on the local one in Phoenix first and if that doesn't work out I will give you a call Amy.  You guys are the best.  I am so happy I have found this site.  It makes my day.......

Comment by AmyLCA on March 28, 2012 at 4:34pm

Hi Joanne - Margot mentioned the lung cancer support group in Phoenix. If that doesn't work out for some reason, or if you are looking for more forms of support, we are starting a telephone-based support group for people with lung cancer in treatment. Give us a call at 1-800-298-2436 for more information.

Amy

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