No surgery

stayingcalm said:

Dear Glenna,
When I was told I couldn't have surgery because my lungs were in bad shape, I was happy! I was afraid to have surgery and maybe lose more lung function.

Have you had the tests for the mutations - EGFR and ALK at least? If you had a biopsy and they think this is the same cancer, then they may have tissue left over to test. I feel for you, Glenna! I'm hoping that you can beat this thing!

I'm still here after 6 years, and the only thing the doc can find wrong is my emphysema getting worse, no cancer. No cancer! If I can say that, then I have no doubt that you will be able to also before too long!

♥ Love, Deb

Glenna M said:

Deb
I saw my oncologogist yesterday and I will be starting carboplatin and taxol on the 22nd of September. They are going under the assumption that it is local recurrent in my left lung that spread to my right lung. They won't even do a biopsy because it is just too risky, all my doctors and the surgeon think that any type of surgery will put me at serious risk of leaks and other complications. They would all love a biopsy so they could tell exactly what it is but I'm in agreement with them...NO biopsy.

They are doing chemo only, once a week every 3 weeks and will do another scan after the 3rd session to see if there is any change. They will not be doing any radiation, I can't have any more to my left lung and they don't feel radiation and chemo is the route to go right now so I am getting the chemo first. He did say that if these drugs didn't do the trick there were other combinations they could try.

I am on antibiotics right now for 10 days because of the slight possibility I have some type of infection, I've coughed up some slightly green phlegm a couple of times. He doesn't want to start chemo if there is a chance of any active infection, even sinus, and they don't give you chemo drugs if you are on antibiotics.

He told me what I already knew, can't cure it but can treat it and hopefully buy me more time. I was in remission for 2 years and hope this time will be even longer. My emphysema is really bad, that is the biggest reason I can't have a biopsy, they are afraid of leaks but also of causing me to lose more lung function. I'm already on oxygen 24/7.

I'm not giving up the fight, I plan on kicking it's azz again!!!

Love you girl </p>

NayPaul said:

and if u have been tested....
The test for the alk mutation can yield a false negative. My wife just retested positive as did a couple of people at our local facility that originally tested neg.


Glenna... thanks again for being such an inspiration!

Glenna M said:

Diane...NayPaul and Z
First I would like to thank you all for your words of encouragement, they help keep me focused and strong.

Diane, right now I am just happy to know I will be receiving any type of treatment. This sitting around doing nothing makes me worry about how much these tumors are growing while we wait. I'll be spending the next 3 and a half weeks trying to gain weight and continue with my walking.

NayPaul, you and your wife are the true inspirations!!!! She has been through so much and I pray that I can handle everything that is thrown at me as well as your wife has. She is truly amazing!!! The won't do a biopsy, too risky, so I won't be able to be tested for any of the mutations. My onco would love to do a biopsy so he would know definitely if the was a recurrence of the lung cancer or mets of the laryngeal cancer but he says it's too risky.

Z...Thank you for you well wishes. I'm on Augmentin (1750 mg) for 3 weeks as a precaution in case there is an infection anywhere, we're not even sure there is but my onc would rather not take any chances.

Thank you all...hope everyone is doing well!!!
Glenna

z said:

Glenna
Are you a canidate for the new pill that came out, that is helping stage 4 lung cancer survivors? I know Deb posted that even though she has no alk mutation her dr said she would probably do well on it. If she can why can't you.
Lori

Glenna M said:

Updating....
Saw the pulmonologist again yesterday because I have been running a temp of 100.7 and my legs, feet, ankles and calves have been swollen and painful. He did chest x-rays to check for pneumonia and said that was not the problem. They were concerned about "right side heart failure" but he said my heart sounded good...so now we still have no idea why all the swelling and slightly elevated temps. Good news is that last night my temp only went up to 99.4 but the swelling is still the same.

Pulmonologist put me on 2 different types of inhalers, a diuretic and potassium chloride pills but he has no clue why I would start having these problems after being on augmentin for 6 days. He said these pills are pretty strong and should have cleared up any infection by now. So now I'm on so many pills and inhalers that I've had to make myself a chart to keep track of what I take when and which ones have to be taken with food, etc. I guess being sick has become my full time job now...LOL.

In 21 days I should be starting chemo and I'll be damned if I'll let this bump in the road stop me!!! My oncologist did say that if the carboplatin and taxol didn't work there were other drugs they could try so I will be sure to ask him about the Crizotinib. As I said, they can't test me for any mutations but maybe they will give it to me anyways.

Thank you all for your concern, support and prayers!!

Glenna