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Saying no to chemo!


Beachmama

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My mom was diagnosed with SCLC, limited, in August. She started chemo (cytplatin (sp?) and one that begins with E). Three days in a row, once a month. She had one round of chemo. Also started 6 weeks of radiation. It has only been two and a half weeks and the tumor is already shrunk by 50%.

She is really feeling the effects of chemo now. Hair is falling out in clumps. WBC down to a 2. Pain in every joint due to daily shots to boost wbc.

My question and my PROBLEM is HOW IS CHEMO HELPING when all it does is HURT??????????

This is only the beginning and it's looking pretty grim.

Why do chemo if it makes someone soooo sick and why do it if sooo many people end up with it spreading anyway????

I believe in a quality of life. She is doing fine with the radiation. Why do all this chemo.

Its my understanding that chemo is supposed to kill cancer cells (and every other cell) in order to stop it from spreading to other body parts, right??? But how can your body protect itself against such a nasty thing as cancer cells if it's constantly being poisoned with chemo? Isn't this a critical time, when boosting immunity, instead of killing it, makes the most sense? If the tumor is going away, that should be enough. Why practically kill yourself for 6 rounds to only find out the cancer spread anyway.

Is anyone questioning chemo? Is anyone trying alternative therapies? Does anyone ever survive cancer without chemo? I know that people still die from cancer even though they are being treated and being made so sick. Why is chemo just accepted and never questioned. Doesn't it seem backward?

I am trying to convince my family to be on my side, so we can convince my mom not to do anymore chemo treatments. It's a tough sell. If the doctor could promise that the chemo will prevent the cancer from spreading, that would be something, but they cannot. They are taking a chance hoping it works. And I just don't get it. So many people still die. SO many times it spreads. Why put yourself though such torture. She is 66, She is not going to tolerate this well. This alone may kill her. And I don't want her to go like that.

Anything anyone can add would be so appreciated.

Connie

8-07 diagnosed with sclc, limited. Left lobe collapses.

10-10-07 First of three in a row chemo. And radiation for 6 weeks.

10-24-07 Feeling the nasty effects. Hair loss. Low whit blood cells.

Also had cat scan. Tumor shrunk 50% (3 inch mass down to 1.5)

Started getting shots to boost wbc. So sick . Bones and joints hurt.

That's it so far. 2 pack a day smoker for 50 years.

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Connie, I'm sorry your mom is feeling bad side effects from the chemo. Have you been with her to the appts and making sure she is getting all the preventative nausea meds?

My Dad was 66 when he began chemo and aside from fatigue he sailed right through it. The only time he was miserably sick is when he was having concurrent radiation. That didn't last long and he was soon on his way to remission, which he enjoyed for over a year. What I have found about small cell is it grows very fast but also responds very well initially to chemo. I'll never forget when we walked out of the oncologist's with a clean report and my Dad said "Wow, that was easy!". I told him to knock on wood, it was a stupid thing to say.

Without chemo, his cancer would have spread like wild fire and we wouldn't have enjoyed our last 2 and 3/4 years together. Something else I've learned through this journey is your mother's female gender is on her side. People do survive small cell. Instead of rallying the troups to discontinue treatment, please read the SCLC forum from last post to first. You'll find success stories in there. Find out if she is getting preventative anti-nausea drugs and print out positive posts. Then let her decide. I wish her the best!

Also, Carboplatin is much easier on the system then Cisplatin, maybe you can ask that she be switched to it. Most Oncologists agree it is as effective with less side effects. Ninety percent of all limited small cell patients achieve remission after therapy. Keep your eyes on the prize!

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Connie, there aren't any guarantees re: surgery, chemo, or radiation results. But, if you had a chance to live for a little while or for a longer while, which would you pick? The 50% shrinkage sounds wonderful to me - especially since she hasn't complete the treatments yet.

I had surgery twice (UR lung and UL lung) and chemo twice for NSCLC. It was really unpleasant - especially the second time, but I would have been very disappointed if any of my children had suggested that I quit. I was almost 65 the first time and spent my 66th birthday in the hospital following the 2nd surgery. Please don't encourage her to do or not do anything! This has to be her decision and pressure from you or the entire family isn't going to help her at all.

BTW, my dad had NSCLC in the 1970's. Radiation shrunk the tumor from the size of a plum to that of a grape. After he completed radiation, the tumor started to grow again. He was diagnosed in early Dec. and died the following May.

Pain pills might help her joints.

Hope she feels better soon. Let us know how she's doing.

Muriel

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There are no guarentees with any treatment when it comes to cancer.

There are those who have had surgery and no follow-up treatments and have done fine, there are others who have had surgery + follow up and get a recurrence of their cancer anyway.

There are those with limited small cell, who progress rapidly to extensive stage. There are those with extensive stage small cell who receive a total response to chemotherapy and become cancer free. There isn't always an explaination as to why some people survive cancer and others don't.

---> insert personal story here :wink:

My dad was dx. with extensive stage about the same time as another person in his clinic. My dad tried every chemotherapy with limited success, while this other patient had first and second line treatment only and received a total response (and a host of harsh side effects). My dad's cancer fight was only 11 months and 21 days long- this other patient has been cancer free for almost 5 years. There's no explaining that. But to go back and ask my dad would he have tried the treatments and fought again, I know his answer would have been yes. I asked him. To him, there was no other alternative but to fight and try.

Each reaction is as individual as we are. Right now, chemotherapy and radiation is what we have in our arsenal for small cell.

People have suffered harsh side effects of chemotherapy to come out the other side cancer free.

It has to be your moms choice whether or not to do treatment.

Give up some quality of life now with the toxic effects of chemotherapy = to be free of cancer later? That's a question and that's a decision that only the patient can weigh and make.

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Hi, I am so sorry that chemo is so difficult for your mom. Everyone seems to react differently to chemo and some treatments are tolerated much better than others. My mom has been on 2 different types of chemo so far and other than occassional low blood counts, she has tolerated the treatments very well. She would tell you that her quality of life is 200% better than is was before she started chemo. Please try and hang in there. See if there is anything else they can give her for the muscle aches. Make sure she is drinking plenty of fluids and see if the Dr. feels a different chemo agent is a possibility. Good Luck! Shelley

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Thank you all so much for your replies. I appreciate it so much. I understand what you are all saying. I guess I am just struggling with this. I don't want to lose my mom and I can only help her a little due to the fact that I have two small children plus one on the way. I found out I was pregnant when she found out she had cancer. It is just very hard for me to deal with.

I am so used to my mom being strong and healthy. In my heart I think she can beat this. But I am so discouraged by the sickness and the high rate of reassurance's. How can anyone stay positive with such an ugly, unruly disease.

I am mad as Hell. Mad that she smoked, even tho we begged her to quit. Mad that she will probably be taken from us sooner than later. And I am mad that she is too ignorant to know what's happening to her. She is an old school woman, who likes to eat whatever (she is only 5'3'' and weighs 250) and pops pills for any ache or pain. She has NO PROBLEM getting & taking the drugs she needs to combat the pain she feels. She likes her arsenal of pain meds.

She is very much like a child. I have to explain everything to her three or four times and she still doesn't 'get it'. She just keeps saying, "why is this happening to me? DId smoking really give me cancer?". She does not know she has a choice in this. She will want to do whatever the doctor tells her. She is not really listening to me anyway. Maybe part of me just tells her she can stop treatments because it then gives her a choice. Maybe it's a little encouragement to get her thru it. I don't know.

She came over last night so I could help her cut her hair. She managed to knot it up so badly into a bun-looking-dreadlock. It was both hilarious and so tragic. I had to cut it out. And she lost thousands of hairs. She was pretty sad. She will be bald soon, I suppose.

I can certainly ask the doc about the change in chemo meds. I am not totally against another round., I just hate it and I am so scared.

My sister and I had a big fight about the chemo issue last night. It is all we talk about lately. I guess I have to just let it go. I feel so helpless against against it. And it feels like a battle that no one wins.

Thnak you all again for your kind words and replies.

Connie

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When my husband was diagnosed I realized pretty quickly how 'out of control' he felt. His own body was conspiring against him. So I decided that in my role as his caregiver, I would support his decisions regarding treatment (or not to treat).

This wasn't always easy. I didn't agree with some of his choices. I sometimes offered him things to ponder, but ultimately it was his choice.

My suggestion would be to make sure your mom is well-informed and let her choose. Then give her all the support and comfort you can muster.

I am so sorry that you and your mom are facing this.

Peace.

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I understand how you're feeling.

When my husband was dx'd, my first thought was "I" wouldn't go thru chemo ~ no way, no how!

I'm SO happy that my husband decided to fight the cancer though.

He's had very bad days, especially when he got the first few rounds of chemo, but he's also had very good days.

We just got back from a week's vacation in Illinois, where he went for walks in the woods, and sat in a deer blind with our son. Who would have ever thought he would be able to do that?

Maybe your Mom is overwhelmed at the moment, and it's making it tough for her to "get" and keep everything straight. (Shoot, I STILL can't keep everything straight! It's too much to absorb.)

Take care of yourself.

It will all work out somehow. "Time" tends to bring answers, eventually.

Nova

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Please look in the forum entitled the Path Less Travelled and Look for Dean Carls Posts. Wonderful and insightful writings he posted about Cancer with out chemo. Miss Him now!! :(

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Boy, this is the 64 million dollar question!

Each patient has to weigh the benefits of forgoing treatment vs medically treating the cancer. Yes, there are side effects. And each new line of chemo carries a different set of side effects, so really, one could re-evaluate it on an ongoing basis.

If a chemo is intolerable, it can often be given at a lesser strength, in the hopes of receiving enough to kill the circulating cancer cells as well as the primary tumor, yet be less toxic than the full dose. Or it can be changed to another regimen altogether.

And the radiation-chemo combination can really kick a person on their fanny!

But it IS your mom's decision to make.

You need an outlet for your anger. Yes, your mom's smoking may have contributed to the disease, and she may have not-so-healthy habits, but you do not KNOW that this was self-inflicted. Regardless, it is beside the point. The priority now is to help her any way you can. Pointing a finger of blame is not helpful. Telling her that you do not know why this has happened to her and that the cause is irrelevant now IS helpful.

Helping her cut her hair must have been traumatic for both of you. My dad was mostly bald, and my mom compared her ahaved head with his for a picture! It helped my mom to make light of it! She also shopped for a wig before she lost her hair. I think it helped the transition a bit. But scarves and hats are an option, too. They even make hats with velcro strips inside and you can buy hair bangs and hair sides and back attachments so you do not have to wear a hot wig all the time.

Best wishes to you,

Karen

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Connie

Each of us reacts to chemo in a different way. I take a lot of supplements and herbs and I have had great results with no side effect that amount to anything. The only way you will know if chemo will work is to try it. Radiation will only treat the cancer that it is aimed at. Chemo will attack most cells throughout the body. It is important to try to kill all the cells.

Stay positive, :)

Ernie

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Hi and welcome.

My Mom was DX with EXT Small CEll last Sept/06-her chemo saved her life-her radiation is keeping her stable. I can only tell you from my experiece and all that I have learned about Small Cell in the past year. Most people even if they are originally DX with Limited will eventually be Ext-not saying your Mom is or will be but if she gets chemo then any cells that are floating around it will get. My Mom did 6 rounds of Carbo/Etoposide-she tolerated it very well. She took her anti nausea meds every couple hours. Her #'s were down @ times and I am not saying it was a walk in the park for her. I understand what you are saying about quality vs quantity of life-it all depends upon the person. My Mom has my 2 kids that are her life and she would have missed a lot in the past year if she had not had chemo.

Good luck to you and your family.

Dar

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I remember asking the same question for my sister. Well, I was able to have some very heartwarming talks with her..that if not for chemo, I probably would not have been able to. We had a great last Christmas together. We went on a wonderful vacation that brought our entire family together. We told each other, "I love you" a lot. I saw her more in her last year than I had seen her in the last 5, because we live in different cities. We had some really great laughs together and we cried a lot together.

Chemo buys time. You hope that during that time, a miracle will happen...and for some, it does.

I hope it does for you and your Mom.

Love,

Bobby

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Thank you all very much. You are all very brave and very beautiful.

Mom is feeling much better today. She had her last shot of wbc boosters, and feels happy about that. Goes to see oncologist tommorrow. Next round scheduled to start Nov 8th, 9 & 10.

I hate hearing that chemo buys you time....it's so grim. On the bright side my mom is taking an immunotherapy from Argentina that we believe is helping her. It was recommended to us by a man who had level 4 pancreaic cancer. He is still alive today with the use of this and radiation. I am praying that she gets more than just some time. We are not ready to lose her yet.

I had my first ultrasound today. It's a girl. She is a little twister and turner, sucking her hands and even trying to suck her feet. Life is amazing! It was a happy day today for the most part. I am due in April.

Thank you all for your support. It means so much to me.

Connie

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Gosh Nova, your husband is so good looking! Looks familiar like someone on TV. WOW what a journey he has had. Compared to what he's been through, my mom hasn't had any problems. I really hope he is feeling better these days. What a fighter. I hope you still find some time to take care of yourself and all those cute little grandsons of yours!!! I just love my little boy, who is almost 4. He's the apple of my eye! Boys are so different (sweeter), than girls. My daughter is just a riot! She's almost 2. I was secretly hoping for a boy. We'll see. You just never know.

My mom is feeling 100% better. And I suppose I am too. We are all getting together tonight for some trick or treating. Should be fun. Have a fun night! :D:D

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I just wanted to share a litte of my husband's battle

with you so you have another success story to read

about and share with your mom. I understand what you

are saying about chemo, Alan became very sick with

chemo almost as if they took alan to the brink of

death to save his life. Well 2.5 years after DX with

extensive small cell with Mets to the brain and a

recurrance this past Jan, my man is still going strong. We celebrate every day togeter as a gift.

Sometimes you just have to trust that the Drs have

your mom's best interest in mind. Not always easy to

do when we see the effects treatment has on our loved

ones.

Prayers coming to you and your family.

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Hi Connie,

Cisplatin and etoposide in combination with radiation killed my tumor in situ -- I had a pancoast tumor, a rare type of nsclc.

Very effective therapy for my tumor type.

Your mom's response to the initial round was excellent, to see that much reduction so soon.

That should be encouraging.

Please accept what your mom wants to do; if you add any immunotherapy please make sure your oncologist knows what it is exactly and how much/often she is taking it. It could otherwise cause actual harm to her in combination with her oncologist's treatment plan.

I personally would be skeptical about a parenteral that had completely escaped FDA licensing process -- it could have floor sweepings in it for all you know.

I wish only the best for your mom in her fight. I hope the next rounds continue to be as effective as the first.

Your mom and your family are in my prayers. This must be hard on all of you.

XOXOXOX

MaryAnn

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Is anyone trying anything alternative or0 holistic out there? Shark Cartlidge or snake venom?? Anything like that?

My mom saw the onc today and she said she is doing very well. wbc count up to 45! Next round starts Nov 6th. Wants mom to do a total of 8 rounds and after this radiation, wants to do radiation to the brain, for preventive measures. She said that my mom has a real chance of 'curing' this. She is comparing my mom to a man she successfully cured 12 years ago who presented with the same exact conditions.

FYI, mom's tumor is (was) 3 inches long. Wrapped around her pulm artery and bronchial tube. Collapsed half the lung. In just two weeks the tumor is no longer on the bronc tube and her lung is back 100%function. Pretty fascinating stuff.

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You need to know there are MANY MANY MANY MANY MANY MANY LONG TERM small cell lung cancer survivors in this world! Please hear me when I tell you that Small Cell Responses VERY WELL to chemos and people go on to live (the new norm) normal and happy lives.

It's not uncommon for the chemo to kill the small cell tumor in a short time. She can BEAT THIS!

I have long term small cell lung cancer survivors in my in person lc support group and I know of many that fought this battle and lived good lives for 4, 5, 6, 7, 8,+ years later.

Your mom needs to know people survive and they do go on. I wasn't suppose to be here either! :shock::roll::wink:

It's a fight, but it's a DOABLE FIGHT! :wink: Tell you mom I'm in her corner and I am cheering her on and I'll never give up hope for her. My best wishes to you and your mom.

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Beach, it sounds like your mom is kicking this cancer's butt! It has to be her decision. If the chemo is working she will ultimatley feel better.

To answer a lot of the questions you have about chemo try visiting

www.onctalk.com

You can read the latest research and if you register you can ask Dr. West questions. He is very good about answering our questions.

Susan

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Beach,

Sorry your Mom is going through a rough patch with the chemo. (Sounds like she's on cisplatin and etoposide, which is fairly standard first line protocol for SCLC.) It is her choice what to do and all caregivers can do is support the choice. Getting angry about her smoking doesn't do you any good, it just leaves you with a knot in your stomach. You need to look forward, not backward.

I wouldn't go mucking around with a bunch of supplements either and Mary Ann was quite right -- run anything she takes by the oncologist. You can seriously undermine the effect of chemotherapy by taking antioxidants injudiciously. Most docs will tell you that a multi-vitamin, some B's, and a good diet is all you need to do. If alternative therapies worked, it would be standard protocol and cancer would be a thing of the past. Many of these diets and supplements have been around for decades and decades and you are better off listening to the oncologist for the real scoop, not some "joe" down the street. You can pour hundreds of dollars down the drain by taking all this other stuff that has no proven track record. If you feel inclined toward these, then coordinate them with a naturopath and the oncologist. It's still your Mom's choice. It really boils down to the luck of the draw how each person responds and feels after treatment. There are no magic wands. Every human being is a unique chemical factory and what applies to one body doesn't to another. Just my take.

Some people do experience body aches and pains from chemo and blood boosters. It's a small price to pay in the long run to get survival. Limited Small Cell IS curable and your Mom is doing great. Radiation works only on the actual spot it's hitting, where chemo works systemically to kill the cancer, with the exception that it doesn't cross the blood/brain barrier.

Let's hope she continues doing well and licks the beast the first time around! Have hope and be happy that your Mom is a fighter.

Warm regards,

Welthy

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  • 2 weeks later...

Hi Connie,

`I am 72 yrs. Young, and have sclc. Dx’d 8/06, surgery Sept.7, 2006 left lower lobectomy. Cancer returned in Feb. 1007, upper left lobe and lower right lobe. Surgery nor radiation not an option for me. Thus chemo. Chemo I think I hit all the side effects there are. Weight loss to 90 lbs. From 105. Nausea, vomiting, weakness, rashes etc….My family argued with me to stop the chemo, it was killing me. My chemo was discontinued after 18 treatments of carboplatin/taxol (6 months). I had the nausea meds, helped some. I am a fighter and I knew I had to eat despite all and I made myelf get ensure down, ice cream, cottage cheese, toast, applesauce, whatever I could get down. I was already suffering from post op thoracic syndrome, very painful and caused problems with eating too. I had my last chemo Aug. 1st. Doc said no more because of the severe side effects I was suffering. Neuropathy both feet and legs and hands, etc… Had a pet scan Aug., 17th showed the tumor in the rt. lower lobe gone and the left lung still tumor, but less dense, no shrinkage. We are waiting to see the results of the upcoming pet scan this month on the 27th.

How do I feel about chemo. It is rough but I came through it. I am a fighter and everyday I would get out and walk 5 – 10 miles a day in 4 trips. I felt that since our metabolism slows down as we age, this would help get the chemo through my system instead of sitting there causing problems. I think it did for I could have been worse off. Also, this time spent walking was a time of peace and comfort with God, praying for others and enjoying His beautiful creations all around me. YES I am glad I had the chemo. God gives us science to help us and though chemo has side effects it did get rid of one tumor for me. Alternatives, yes a great believer in them also, God provides other avenues to go along with the chemo or after the chemo. My doctor told me what I could take while on chemo and since off of chemo I am taking lots of them and trusting for good results on my upcoming pet scan. Had I not did the chemo and only alternatives and they failed and let the cancer progress rapidly would have left me guessing. Taking the chemo knowing that the alternatives could help too gave me peace of mind and I felt was what God wanted me to do despite my childrens opinions. The side effects do improve, but you have to think positive with cancer and fight the disease and trust in God’s will for your life….Keeping faith that I will be a cancer survivor…I am thus far! Sally

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