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I am still around


Guest Phyllis

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Guest Phyllis

Hi, Just wanted to let you know that I am still around even though I look like I have been through a battle zone. I have to gain back the 15 pounds I lost which I could not afford to lose. I am very bruised from needles. My blood counts are low. I get tired more, but I am not bed ridden like they thought I would be. I have Vena Cava Syndrome that I am fighting with blood thinner shots which hurt. My face is swollen to be grosteque from the collapsed veins in my neck. If you ever suspect you have Vena Cava start yelling for a stent. Don't let the veins totally collapse first.

I am on a new drug that came out in Feb. 2004 called C225 or Erbitux. It is an inhibitor. They did not think it would help me because I did not do well with Iressa but we think it might be. I will not get optimistic because once this stops working that is it. No side effects but once a week which is a pain. I will never complain about my oncologist again. He is a saint. He had to set up a special clinical trial for me because I have head and neck cancer not lung. I probably will not post much since I have neuropathy in my fingers of right hand. Plus I am stressed. I did get my disability thank goodness since taking care of me is a full time job now.

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Dear Phyllis,

So good to hear from you. And what a tough fight you've had. You should know that we're all rooting for you!

Don't worry about not posting too much -- just keep on tuning in to the board so you can receive the encouragement you need to keep on going. Between the brusing and the swelling and the everything else, you've had MORE than your share of what we call "tsuris" -- and that doesn't mean pleasure! But it's great that your oncologist is fighting those battles for you -- sounds like you've got a good chance with the Erbitux -- and who knows what else might be out there as well. We're plugging for you!

Ellen

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Guest bean_si (Not Active)

I have been worried sick about you Phyllis but I'm being selfish - you need to rest and not post. I'm so glad you got your disability. Let's believe C225 will work. Praying for you every day.

Cat

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I am so thrilled to hear from you. You have been in many thoughts and prayers. I am glad you are fighting and back on the team wtih your oncologist! Please don't think your out of options after Erbitux - You never know what could be around the corner!

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Phyllis,

I'm sorry to hear you are having such a difficult time right now, but glad your oncologist has gone the extra mile for you (but then shouldn't they all?). I know when I had neuropathy it was torture to use the keyboard and my computer, Internet and e-mail are my lifeline, but I just couldn't deal with it. I hope this will be temporary for you.

I hope your treatment plan will be successful, but always remember new options are coming on board all the time.

Margaret

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Phyllis,

I'm so glad you posted. There was an APB post looking for you and many were very worried. I feel so bad that you are having such a hard time, but I sense more than a glimmer of hope in your post about the C225. I am praying for you that this will be the bullet that will shoot the cancer straight back to hell where it belongs.

I know this is a stupid question, but what is a stent? Phyllis, don't you even try to answer because I know it's hard for you to type - let somebody else tell me.

One last thing. Do you have family or friends helping you? Have you given Ry your telephone number or someone's number that she can call. That way, if your AWOL again for too long, she can call and check on you and keep us posted. Ry keeps telephone numbers confidential and will only call you if you have been absent from the board for a long time.

Phyllis, you are in my prayers.

Love,

Peggy

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Was so glad to hear from you. I too, have been worried. It seems you have been going through some real rough spots and I am hoping that the new trial will be just the ticket for you. If you can't post call Ry or anyone and we will be glad to tell everyone how you are doing. Keeping you in my thoughts.

Nina

Ps. As stent is a wire mesh tube that can be inserted into the vein or artery and opened up to provide blood flow back through the clogged vessel. VP Chaney has several in his heart. They go in through a vessel (usually in the leg) and thread a long catheter up through the body til they get to the blockage. Then the mess tube is opened to the width required and left. The catheter is then removed. Hope this helps a little.

Nina

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Guest Phyllis

Thank you Nina for the explanation of a stent. My cancer has become so aggressive the stent remained open for one week.

You guys are smart Thank Goodness. My onc and I are both feeling our way thru all of this. They have been amazed that this Erbitux or C225 is even working at all on me since Iressa didn't. They are like drugs except that the C225 works on the outside of the cancer and Iressa works on the inside. I just want stable disease.

My situation is that I do have a 3 cm+ tumor in the upper apex of my right lung. There are more tumors than that of course. The Vena Cava problem is what is giving me so many problems. So with that tumor and the port my veins in my neck collapsed. Note: Once they removed the port and put in the 6 inch stent the veins in the left side of my neck are also becoming necrotic. I don't have many veins on the left side side my surgery in 01.

Between the chemo and the blood thinner shots I give myself (Lovenox) the swelling in my face started to go down plus the fact that all of the wax was removed from my ear and a tube inserted. Today the swelling started coming back. The weird thing is that I feel pretty good. My oxygen level is 98%. I guess I am trying to figure out why the swelling is bad today but not as bad as before. Also my hand and arm are also feeling better wiith just a little tingling but I am now starting to hurt since I am overdoing things.

I am sorry this post is so long but I am confused. On my second week of chemo the doc had to give me two liters of saline due to dehydration (chemo caused?). He also gave me Zometa to bring down my calcium levels due to the aggressive cancer. I think I might have also gained a little weight (I don't have a scale) since my arm doesn't look as wasted.

I am trying to figure out that I think my swelling is worse when I overdo stuff physically. When blood thinners are involved is it better to just rest all of the time or do you do normal stuff so that gravity helps with the swelling? Or am I wearing my body out so the chemo doesn't work as well? Also, should I use heat packs on my swelling since the heat opens up the veins but cold packs would reduce the swelling? I am also starting gaterade today. I am not doing diuretics for now cause that might be contributing to the dehydration. Or do I need to increae the Lovenox to .6 as opposed to the .05 (not good at this techy stuff). The blood I was suctioning out of my lungs about two tablespoons of fresh each day has now stopped and the mucous has thickened. Thanks for any advice and again sorry for how long this is.

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Guest bean_si (Not Active)

Phyllis,

The swelling probably has to do with the vena cava so you should take it easy. Also you want to take care to avoid bruises as blood thinners make it so easy to get black and blue. So no climbing trees. :wink:

I think you should give your doctor a call on these questions 'cause you need the right answers from medical people not us weenies. :roll:

I always thought cool packs were best for swelling but that's for athletic injury - not sure about this.

Cat

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My understanding was also that excercise makes vena cava swelling worse! It may be that you are more active but PLEASE call your doctor so you don't end up in the hands of those incompetents again at the ER. Also please -- if possible -- keep us posted. Do you have anyone that can do your typing for you just to post an update for us ?

Sorry to be pushy...

Lisa

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Guest Phyllis

Ya'll are so great. You know the overdoing it sounds reasonable. The swelling did start to get worse as my activity level went up. You don't have to tell me twice to stay in bed. Your advice is very valuable to me. I keep figuring I might be missing something very common sense. I think it is odd that prior to this when the swelling started going down I was getting blood out of my lungs. The swelling gets worse and the blood stops. I am hoping that he will let me increase my blood thinner. I am putting heat pads on the collapsed blood vessels and cold packs on the swelling. I am trying to do a lot of fluids to hopefully loosen the mucous up since this chemo is really dehydrating. I was wondering if Elaine might want to ask her doc about Erbitux or C225? It is a once a week thirty minute IV chemo with few side effects. You would need good insurance (which I am amazed that my insurance is covering it and Medicaid has not kicked in yet). It is not experimental for lung cancer.

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  • 2 weeks later...

Phyllis,

I must have completely missed all but the initial post on this thread. Is Erbitux (sp) off-label for lc? I get so confused, lol. I have an appointment in a few days so I will ask

Thanks.

I worry about you all the time.

love and fortitude

elaine

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