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Taking a break from chemo


Candy

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Finally, we got the scan results. We went to the doctor's office yesterday and it was SO crowded! And because it was so crowded, everyone was running late. We were supposed to see the doctor at 2:45 and we were still sitting alone in his office at 3:45. I know they are busy and usually they are pretty good, but wouldn't you know that it would be on a day that we are waiting for scan results???

So, Hugh's scans looked "good". His liver and bones look good. His lung still has an area of "tissue change" but the doctor thinks that could be scar tissue. His advice was to stop chemo at this time. He said he knew it was a really scary thing to stop but that he thought it was the medically correct thing to do. There wasn't any significant improvement after these last two treatments and the doctor said he wasn't even sure that there was anything to improve. (I think that's good news). The doctor feels that anymore than 8 treatments at this time would really beat Hugh down even though Hugh is handling this stuff really well his counts still get really low after treatment now. There was a moment when the 3 of us just sat staring. I'm not sure what response he was expecting but it seemed like he was waiting for something. Finally Hugh said: In plain English, is this good news or bad news?" The doctor said it was good news and that now the trick is keeping it gone (I love the "gone" word). Hugh will go once/wk for the next 4 weeks for an arenesp shot and then 1x/month for blood work and scans in 3 months. Does that sound reasonable? This IS scary stuff. I hate that we can't feel wildly excited about finishing because the fact that they keep warning us that it almost always returns stays formost in my mind. I did ask him if there was other treatment available if it came back and he assurred us there was.

Here is something I thought I should share. The doctor gave Hugh a prescription for Celebrex because he said studies show SOME signs of possible benefit in stopping recurrent tumors. He stressed SOME and POSSIBLE loudly and that this was no guarantee, nothing proven, but he thought it was worth taking it. Its expensive (150 dollars/month and I am still fighting with the insurance company to cover it, but I will pay the monthly bill if they don't. Besides, Hugh has always had a bad back and a sore knee so we figure it will have to help all those other aches and pains.

So now I am going to try really hard to enjoy this time of remission without thinking about what-ifs on an hourly basis and pray that it will last a long time.

That said, I ran into an aquaintance of ours yesterday who was asking how Hugh was feeling and I said he was doing well. Her reply was "Oh, so it hasn't metastisized anywhere?" I was rather taken back by her bluntness. Its not usually something I share with people on the street, we live in a small town and though Hugh's illness is not a secret I don't want everyone looking at him like he is about to keel over or saying things to him about him dying or one of their relatives that has had that and died. I thought for a minute and figured I had three choices - either lie and say no, embarrass her by saying something about my feeling that it was a rather personal question or tell the truth. I decided the truth is always the best and I replied that yes, it has metastisized but that the chemo was seemingly taking care of it since SCLC was extremely responsive to chemo. She left with this parting sentence: Well, I'll see you later, please enjoy whatever time the two of you have left.

You know how there is surgery to have cats declawed? I am thinking of having myself "clawed"

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Candy and Hugh, that is very good news. I'm happy for you two. Enjoy! Your acquaintance is like a lot of the general public -- they believe metastasized cancer is an immediate death sentence.. Unfortunately, they are out there all around and we can't escape them unless we go live in a cave or something. We usually set them straight with the truth -- for them to believe or not. Celebrate your good news. Don

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Dear Candy,

It's good that Hugh has gone through the chemo; what an ordeal to have BEHIND YOU. I was glad when it was over, too. As to the waiting game, well, we all have that problem, but it's best to try and put it in the back of your mind when it comes creeping out. Enjoy each day and celebrate when he feels good. It's hard, i struggle too with this. I finished chemo last june and continued to go for Procrit shots for low red cell counts until about the end of October, i've been having CAT scans approx. every three months, also. I think that is the standard treatment. Your post indicates how much you're struggeling but please know there are many people here who are rooting for you and praying for you. As to "well meaning" people on the street - i would give them as little info as possible, just indicate you're fighting a battle and you hope for the best, and then walk away! That person's comment was really unthinking and totally uncalled for. Oh well, that said, i'll keep you and Hugh in my thoughts. Please try to smile about the little things. :) Joanie

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Candy

It sounds like very good news to me too. I have the same diagnosis as Hugh and pray for the same results. Your "friends" comments to you are one of the reasons I DO NOT tell anyone outside of my close family and close circle of friends about my illness, I just can't deal with remarks like this, I would also feel like scratching her eyes out! How long does she know she has left? She could be hit by a car. People are so inconsiderate and unkind sometimes and I don't think they even realize it. Just chalk it up to stupidity on her part and pray for her that she never has to deal with anything this serious in her life. People like that need prayers.

Bess B

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Candy,

I'm glad Hugh will be getting a break. I know just how you feel. One more round and I'll be finished too. Then it's the hardest part of all - the waiting game. I'm going to try so hard to put this all out of my mind for awhile, hope you can too. I know I won't know how to act with no treatments going on, can we actually get back to a normal life? I'm thinking I'll look into diet and complimentary therapies and keeping my self in the best shape possible while trying to build up my immune system. Sounds like vacation time to me. Congratulations!

Jenny

P.S. I can't believe what that person said to you! Unreal!

I also have noticed how busy my doctors are. That place is more crowded every time I go - so sad.

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I don't know how celebrex does on SCLC, but it is a COX-2 inhibitor. Now the way I understand this works (and I am not a doctor!) is that cells are born by dividing, and then they live and then they die. We wih cancer have an enzyme that tells the cancer cells "Don't die, just stay alive and keep on dividing and making new cnacer cells!" That enzyme is a COX enzyme. Celebrex is a Cox enyzme inhibitor. It stops the enzyme from telling the cells to not die. And then the cells will go ahead and die like they are supposted to.

The current studies are reserching anywhere up to 1200 mg a day so if your celebrex is costing you $150 / month you all should be taking 2 200 mg a day. If your insurance company won't pay for it, call the celebrex folks. I did n't have prescription insurance and I called them. Immediately they gave me some number to give to my druggist and I got 2 a day for 30 days for $5.00. The celebrex folks are sending me paperwork to get this same deal for the next 5 months. Great folks!!!!!

Congratulations on your good news!!!!! That is wonderful!

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Hey Candy, Congrats to you and Huge, that is good news. :) Now ya need to go out and celebrate!! enjoy, enjoy, enjoy!

Love your comment about getting clawed; sometimes ya run into people like that and ya know that they really don't have a clue as to what they said;

I was being scheduled for my bronchoscopy and a friend told me that they did that to his brother and 5 months later he died, My month just dropped and I said gee Ron thanks for the encouragement. Some are just not the sharpest knife in the drawer if you get my meaning. :shock:

God bless and be well

Bobmc - stage IIB - NSCLC- left pneumonectomy- 5/2/01

" absolutely insist on enjoying life today!"

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Oh Candy, you did receive good news!!!!! Dont let anyone spoil it!!! I wrote in a post yesterday how I "overexplain to everyone" so no one will have that pity look when talking about my father. People just dont understand, dont let it take away your joy.

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I don't know what the studies say about using celebrex on sclc. I was dx'ed 4/03 with nsclc, 4 cm in right lung, nodes, both adrenal glands and maybe in ribs. After 3 rounds of chemo and after taking celebrex for 30 days, on Tuesday I'm having my first CAT scan. I'm scared sh--less!!! But I think that the outcome will be good. I am 10 weeks out from dx and I'm walking, talking, would be working but gave up my job for SSI (I had no insurance) and now I garden and do medical research. I don't have any problem breathing and am almost pain free!!! More painfree now then 2 months ago!

So good luck with the celebrex and call the folks who make it and try to get it for free.

Margo Lubbers

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Candy,

Congratulations. Sounds like very good news to me. My mom has sclc and she too is on a break. The tumor shrunk significantly but never went away. She has been off chemo since Feb and had a scan last month. There was no change in size. This was good news because it was not growing! She is taking Celebrex. She is also taking Coral Calcium. I dont have the number on me but you can look it up online. This is supposed to kill cancer cells as well. All I know is that something is making my mom feel GREAT. She has even put on a few pounds. Eats well, sleeps well, and has more energy than me! Hope everyone can feel this good. Will be praying for everyone.

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