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I'm on a rollercoaster...can anyone help?


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Guest babgb138
Posted

I will try to make my story as short as possible. My dad has sclc and was diagnosed June 4th, 2003. He is 63, and smoked cigars and then a pipe for 30 years. He only quit maybe 4 years ago. He is a self-employed CPA, which makes this illness even more difficult. If he can't work, no one can do it for him.

In April of this year he had a cold. He never started feeling better from it so he went to the doctor. Of course the doctor did a chest x-ray and told him he had pneumonia. He went on an antibiotic, but that didn't help. He finally went to the emergency room for the first time on May 31st. They did some things and sent him home. He went back on June 4th and was there all day. They did a catscan. The ER doctor told my mother "I'm sorry Mrs. Perry, but your husband has cancer". She almost passed out.

A few doctors appointments later, we find out he has sclc. It started in some lymph nodes in one lung, and spread to his liver. That explains why he was soooo sick. He starts chemo on June 17th. We are very worried at this point because he can't eat. He lives on ensure for 2 months, and then finally starts to eat in August. Once he starts to eat, he starts to improve. He improves so much in September that he is back to work all day while undergoing Chemo.(One short cycle, one long cycle, one week off).

On October 7th he has his last chemo treatment and feeling wonderful and normal. He gets a catscan done October 31st and the doctors are amazed. It is completely gone from his lung, and the spots on his liver have either disappeared or look like little fuzzies. So, they send him on his merry way and tell him they will do another catscan the end of Dec.

Since that October 31st cat scan he has gone down hill dramatically. As of today he is in the hospital and was taken via ambulance because he could not get out of his chair. We could see him not feeling good in the last 3 weeks, but I have never seen anything happens so fast. November 22/23 he was at a football game. Last week he was still driving and going to work. Now he looks terrible, can hardly talk, and extremely weak. I just got home from the hospital and was hoping someone out there could explain or just give me some encouraging words. They are doing a catscan today. He isn't in any pain. The doctor that just saw him said he believes there is fluid in his lungs. His legs are very swollen. Is it possible that he just has pneumonia and it is really bad because he has just come off of chemo, or is the cancer back with a vengence and he doesn't have much time left? I am so distraught, because in October I really thought we had licked this horrible disease.

I have been doing a lot of phone calls etc. because my mother is so upset she can't think clearly. I hope someone out there can help me.

Kathy

Posted

Kathy, I am in your exact situation right now, except that my mom was diagnosed in May. Just a few weeks ago we were Christmas shopping and now she is hanging on by a thread.

I know that she is dying now. She hasn't eaten in two weeks, is VERY thin, weak, and really can't speak. She can barely drink water. It's terrible watching her go through this. She lays in bed, constantly jerking because of the morphine side effects. This is torture.

I keep doubting our decisions. Decisions like whether to put her in a hospital, give a feeding tube, sign a Do Not Resesitate, call loved ones from out of town (we did already), and so on. It's very, very difficult. I'm asking God for his Mercy and just waiting.

I just try to hang in there.

Anne

Posted

Kathy,

I wish I had an answer for you but I am so sorry I don't. I developed pneumonia two weeks after my chemo also. I ended up in the hospital for 4 days, that was in September. It took 6 weeks after that, that I started feeling better. It really is hard on the immune system. Let's hope that is what is going on. Your dad and your family are in my prayers. Keep the faith, God answers our prayers, by his stripes we are healed. Just believe...

God Bless

Karen

Posted

Kathy and Anne

I lived through what your both living through. My mom was doing phenonimally good. We were actually going for the PET scan to confirm remission the day we found out the cancer had come back and fast.

the dr's tried another chemo (taxotere) she was on (carbo/taxol and it worked real well) well the taxotere failed badly and caused horrible side effects. She was swelling more and more daily and the bottoms of her feet turned purple and she had very week muscles and could not get out of her bed. The chemo caused a massive burn on her arm where it was put in and so we put in a pic line. She went into a wheelchair and they put a feeding tube in her and nothing was the same again.

no one could explain the swelling to us and her white cell count just kept going higher and higher. she was in allot of pain from the g-tube surgery and so they gave her morphine which caused a Grand-Mal seizure as a reaction to that.

things settled down although she got no better they were going to send her home and told her she just had to fight through the side effects and try harder. The day they were releasing her she just didn't seem right to me and while we were waiting for the doctor to come in she went to sleep and actually looked peaceful. 1 hour later she just died. None of her regular doctors were there all three (pcp/ onc/ and surgeon) were all on vacation and all we had were associates.

they said she may have had a heart attack from so much fluid build up but due to moms religious beliefs we didn't do an autopsy. so we will never know.

All I can offer you, because only God knows whats in store for us, is my prayers. I can't tell you its going to get better or worse for that matter. I can tell you to spend every second with your dad and mom and tell them you love them and how much they have meant in your lives.

cancer is awful and unfair and causes allot of anger and resentment towards doctors for not caring enough and not being more compassionate and just plain going to the ends of the earth to make our loved one's well again.

If the worst happens, turn to your loved ones, cry, for it will ease the pain and vent when you need too. Come to us here that are living through it now and maybe someday offer support for someone else in a bad situation. It sucks to be here in this world of cancer, it sucks big time and if prayers alone could cure it, there would never be cancer again.

I will be here for both of you when you need someone. just reah out and I will hold you up. I am in that world right now and so many here have done just that for me and I am trying to honor my moms memory by passing it on. I am my mothers daughter and she was so kind and loving to people and I am going to dedicate my kindness to her because it came from her.

my prayers are with you.

Posted

Shelly,

Please read the following info on Taxotere. It says one should only be given 75mg of this chemo, not 100mg, it is very toxic. Do you recall how much your mom was given? I know she has passed and prayers to you and your family.

http://www.aventis-us.com/PIs/taxotere_TXT.html

God Bless

Karen

P.S. My onc wants to start me on this stuff. They cannot find any evidence of cancer or find the tumor. Had PET 3 wks ago. Get results this Friday. I had to call for appt. Doc didn't call me, does that mean PET is clean. No news is good news or incompetent doctors office???

Posted

Hang in there .... although my Mom is now cancerfree she had a collapsed lung and twice I thought she was going to die... recently I couldn't get her to get scanned cause she swore treatments were killing her....thats the ugly truth....All I can say is learn as much as you can and come here and get your feelings out cause cancer is the rollercoaster we are all are on .... Hang in there demand only the best and turn the rest over to God or realize that you can't predict or control this beast.... I hate cancer it sucks...

God bless you

Laurie

Posted

Sometimes it DOES seem like the treatments are worse than the disease yet all we can do is make the most informed decisions possible and go from there. I have great admiration for those who have selected to end treatment for whatever reason. They have made THE most difficult decision they will EVER be called on to make. God Bless each of you and my prayer is that one day there will be NO cancer to claim us or our loved ones.

MO

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