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Effusions and Metastatic Disease


-Cheryl-

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Hello Friends,

I avoided reading my CT report, only because it just made me even more depressed than I already was, which is .....the lowest point I have ever been. I am either not sleeping, or if I actually do fall to sleep, I do not want to get up. I finally ate a little yesterday, Jack got fajitas.

I think once I have a game plan and am fighting this monster, I will be better. I am morning my life as if I were already dead. My report talks of "Inumerable pulmonary nodules, Metastatic diseaese to both kidneys, pleural effusions, and a large percardial effusion that may be malignant" just to name a few. It is frightening.

TAnn please tell me about your effusions. Were they malignant? Anybody else have insight into this and kidney metastatic disease.? Please respond! I am so sad right now and feeling hopeless.

Cheryl

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Cheryl,

I can't even imagine how scared you must be, but I am also thrilled to see that you just aren't willing to give up and that you are continuing to look for a cure. My husband has a pericardial effusion. We don't know if it is malignant, but it probably is. It was small at first, but medium on the last two scans (most recently this past week). The only thing, at this point, that we can assume that has kept it at "medium" is the Iressa. He has only been on it 6 weeks (5 weeks at scan time), so it's not a 100% for sure that the Iressa is responsible, but it is encouraging. I have known all along that what happened to you, having to be hospitalized for the fluid around the heart, is a probability. It has made me a nervous wreck and I watch for ANY sign of his having difficulty breathing. So far, no problems, and I am praying that the Iressa is keeping that effusion down. He also has pleural effusion in the left lung, along with some collapse and loss in volume, but again, the Iressa seems to be holding down that effusion as well - at least that is what we are hoping!!

Have you thought about trying Iressa?

I care so much, Cheryl, and I just wish there was more that I could do for you and Jack.

Love,

Peggy

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Cheryl

No answers really, but I guess questions. I thought they drained the effusions. Didn't they biopsy them?

I thnk the feelings you have are so normal, but when you begin to see results you will be better. Also try to find glory in all the things you can do. Your cancer can be beat. It may have to be treated chronically until a cure comes along, but you are strong with a lot of fight in you.

I suggested once that you get to know those monsters in the basement. Maybe others thought this was bad advice. But I think you can't fight the enemies you don't know. Besides the cancer, there are other "enemies" inside us that weaken our resolve. Maybe take this time to find the weakness in that which weakens your resolve, so you can fight the cancer better in the coming days. Poke holes in its arguments. SOon you will find its not that powerful of a monster because of all the good you have on your side.

Love to you

elaine

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Elaine,

I haven't seen the results yet on the sample of fluid drained from my lungs. My doctor seemed to think that malignancy was likely, due to the "enumerable number" of nodules. Peggy, every doctor I have tlaked to wanted to try a traditional, proven method before Iressa. I guess because I have only done Cisplatin/VP16. Plus, Iressa will eventually stop working I 've been told. However, now they have options similar to Iressa, which might be just slightly different enough to keep working. Andrea, Thanks for the encouragement.

Cheryl

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Cheryl

I or someone recently posted an article about trials that were using Iressa as first line treatment and that it was showing very good results. Also none of the traditional chemos are providing cures, that I know of, so I am wondering why they are saying what they are saying. Is it because they get a cut of the chemo dollars and not the Iressa dollars???

I hate to be so cynical, but.....

You are going to beat this Cheryl.

elaine

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... now they have options similar to Iressa, which might be just slightly different enough to keep working

Thanks, Cheryl. I know I have heard there are 4 or 5 drugs "in the pipelines" that are similar to Iressa, but I didn't know any of them have been approved. Our onc is holding his breath waiting for one to be released, hopefully this summer. I don't remember the name of it, but it started with a "T". Is there something in particular that you are looking in to that we could also ask our onc about?

Still praying for you.

Love,

Peggy

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Cheryl,

I've watched your posts for a long time and always cross my fingers for good news from you. I know that you are a fighter and have a great attitude. Recently, you've certainly been dealt a blow. But I see your fighting spirit coming through == you just want to be fighting this disease and are feeling helpless and frustrated waiting for the next weapons!! Hopefully, they will be given to you soon and your spirits will pick up.

Regarding Iressa and let me tell you I'm no expert about it. My understanding is that it is most successful with femaies who were non-smokers. I looked in your profile and do not see whether you ever smoked or not. Somehow, in my memory, I believe you were a non-smoker. I also believe that I have heard that they find Iressa more often effective with people who have BAC or BAC features as you do.

Even if you were a smoker, Iressa is still sometimes effective. I know that because my Dad is a former smoker and that is his next line of treatment. He also has BAC features.

Anyhow, Cheryl, sending tons of prayers your way. Wish I could do more for you. I really do. Many hugs to you too.

Gail P-M

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Cheryl,

Keep this in mind: Many of the new studies coming out are showing that Iressa is working BEST in NON-SMOKING WOMEN WITH BAC FEATURES.

I don't recall if you were a smoker or not, but 2 out of 3 sounds like a good thing to me. I would investigate that avenue a little more thouroughly!

Keep up the fight as you enter this next phase of treatment and kick some butt! :wink:

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Cheryl,

Efffusions can be malignant or not. I am so sorry about your mindset right now. I certainly do understand it. There was a time when new nodules were popping up for me from WEEK TO WEEK. They did stop though. For me it was Iressa (and then Iressa with Celebrex) and for others, different chemo stabilized or eradicated their tumors. Something will put you back on the path again and you will regain your fight. In the interim, we all have to freefall sometimes. You just got all the wind stolen from your sails. It is more that alright to mourn - until you go to battle. I am crossing my fingers and saying prayers and wishing you well.

Lisa

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Dear Cheryl,

When do you see your onc? The sooner, the better so you can have some answers. I totally agree that you will feel better when you have a plan of attack.

Meanwhile can you do anything to take your mind off it - even for just a little while? Things that work for me: trashy magazines, rented movies, or even dumb games on the internet - my favs are Zuma and Collapse at MSN.

I've also been doing some Reiki sessions. After a session, I have alot more emotional energy to deal with this stinking disease. I'm also a very strong believer in the visualization of wiping out the invading predators.

I'm saying prayers for you.

Jane

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Cheryl,

Yes, I do have a malignant pleural effusion. I don't have a pericardial effusion. Acutally, my malignant pleural effusion is how I was diagnosed.

They took a sample of the fluid and found tumor cells. No bronchoscopy or other biopsy. You said you have pleural effusions, does this mean you have an effusion in both lungs?

My best advice to you....DON'T look up malignant pleural effusions on the internet. They scared the &%#$ out of me! But on the positive side, I am a 1 year 3 month survivor, I had the Denver Catheter put in to drain the fluid at home. The tube was in for about 5 1/2 weeks, until we were no longer getting any fluid to drain. The tube was removed, and it has been 2 months and the fluid has not come back. That is a GREAT thing, and now we wish we would have addressed the fluid much earlier in the game. (We waited to have the catheter until my lung was completely encased in fluid.)

Remember, a pleural effusion is fluid in the LINING of the lung. Not fluid IN the lung. It is caused by the cancer. It can be cancerous, like mine with tumor cells or non cancerous. They (the oncologists) consider it a part of the circulatory system, so it is automatically a stage IIIB/IV if malignant.

It causes shortness of breath due to the pressure being put on the lung. The lower lobe of my lung actually collapsed due to the large amount of fluid and did not re-inflate (probably not the right term) after drainage.

I hope this information is informative and not scary. Please be strong. And remember, some effusions are reduced and or eliminated by chemo.

Please feel free to pm me if you need anything at all, even if only to scream!

I am praying for you,

TAnn

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Hi Cheryl

I'm a long time lurker and an occassional poster. I'm familiar w/your situation in particular because you started out w/my dad's staging so I've been following your plight and others since last September when he was diagnosed.

So w/regards to pleural effusions. My dad had a decent sized pleural effusion before his surgery which was in April. He, at that point, had been through two full rounds/phases of chemo tx (taxol/carbo) and 35 radiation tx all concurrently then right before they were deciding whether or not they could do surgery (scans etc) they discovered this pleural effusion 600cc's worth. We were so disheartened at that point thinking he had come this far and now he won't be able to have this surgery they were telling him he would have. Well as it turned out...even to the doctor's complete and utter amazement this effusion was NOT malignant. His doctors told him that it was a 98% chance that it was and he should not be optimistic at that point but they wereWRONG!!! so you see, things aren't always as they seem to be. He, at that point, also still had active cancer in his lung that they were going to operate on but they had erradicated the mediastinal lymph nodes so that is what made him a surgical candidate. So since he had a negligible amount of cancer still left in his lung they were sure that this effussion was cancer but as I said it wasn't. So don't assume anything....as a matter of fact, they were almost ready to but the kabash on the surgery altogether when that pleural effusion showed up and they were considering not even draining it because of the assumption that it probably was cancerous but it wasn't.

It was interesting to note that the reason the pleural effusion was there was because the lower half of this lung was absolutely destroyed but noone seemed to answer why was it like that....chemo???radiation???fibrosis???/pneumonitis???? His scans were of concern to them because it was very shadowy down in that region (which once again they assumed to be cancer and when they biopsied it pre-surgery they found none!!) So regarding your other "nodules" you just don't know whats going on in there until you get in there. This may come as a shock to you but these physicians are not always right!! :wink: I too sought the councel of TANN when my dad developed this effusion because it was very intimidating and she was a great source of info.

Quick note on the kidney metastases. Oddly enough, three days before my dad's lung surgery, my husband's dad was having surgery on his kidney to have it taken out because it had cancer in it but that was his primary and only tumor. Apparently it had been there a while and they were in not hurry whatsoever getting it out so he obviously only has one kidney now and apparently radiation is the preferred tx for kidney cancer because chemo doesn't seem so have a great impact on it but again that is if that were the primary and it obviously is not your primary...so...

I'm so sorry that you are finding yourself in this situation right now, I didn't like reading about it for you. The only thing about this effusion that you mentioned before is that if it is malignant than perhaps it can get you into the GVAX trial. I am really praying that God can take this bad situation and make it good as we know he is more than capable of doing that. Please take care. I'm praying for victory for you in this!!!!!!!!!

Karen

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((((CHERYL))))

I don't have any answers for you, but I want you to know you are in my thoughts and prayers daily.

I am so sorry you are feeling so much hopelessness. It is alright when life throughs us these curveballs to want to duck and hide for a while. But, remember that hope resides in you. Dig deep inside and find your strength, your fighting spirit and know that you CAN beat this.

Ask your onc about Iressa. Have you looked into the Glevac trials yet? I've heard that there are some good success stories with that.

Whatever you next step, wherever your fight takes you, I am praying for you, and my heart is with you and Jack.

Love you

Carleen

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Cheryl,

Nothing to add to what has been said, but I wanted to offer encouragement. I have been following your posts because your heart shows in everything you write. It is clear that you are a very good person, and I wanted you to know that my thoughts and prayers are with you.

Pam

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Guest bean_si (Not Active)

Cheryl, I just want you to know that you continue to be in my prayers. I'm sending positive energy your way. What a rocky road it has been for you lately. I'm hoping with all I can that things will improve drastically.

Cat

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Cheryl,

I hope things turn around for you. Here are the drugs that target EGF kinda like Iressa (Gefitinib) Hope you can get in a trial. If not you can not get the trial you want, you can petition for drugs that are not approved by the FDA

1) Tarceva, OSI-774, Erlotinib

2) Erbitux, C225, cetuximab

3) ABX-EFG, Panitumumab

4) CI-1033

5) SAI-EGF

http://news.cancervax.com/phoenix.zhtml ... id=579195&

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Cheryl, I have nothing to offer you but my prayers. Sorry there is nothing else. I'm unfimiliar with your case. Wish I could say or give more. Hang in there, its not over yet, I Know how hard it is to maintain a positive outlook but that is our main weapon. Don't give this disease an inch, fight it with all you have.

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