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My mother diagnosed with sclc, on chemo, what can we do?


thatpersontoo

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My mother found out last week that she had small cell Lungcancer in

both lungs, that has spread to the bronchial..(tubes?) and to the

liver.

the tumors apparently look like spider webs(and therfore apparently

inoperable?) in both lungs( probably started in the right one, the

say).

the first symptoms, except weightloss which I hardly reflected on when

I saw her over christmas, where about 4 weeks ago, when she had

extreme pain in her stomach, then they x-rayed, and... well now we

know...

They gave her 2-3 months to live without chemotherapy, and about 6 (

maybe more )depending on how she responds to Chemotherapy.

She started Chemotherapy today, and is going to have 4 cycles about

3-4 weeks apart of etoposide and carboplatin.

she is currently on 60 mg tablets of morphine which she finds a bit to

strong, this is to numb the pain in her stomcach(Liver?) which is

there all the time.

The doctors thought the tumors had started and spread over the past

2-3 years, which apprently is very quickly.

Mom had A hysterectomy about 4 years ago,because cell changes had been found.

She has Smoked about 20 cigarettes aday for 35 years, and she had a

stress peak at which I think she was up to 35-40 aday about 3-4 years

ago for a few months.

Since this type of cancer seems to often be related to smoking I am

wondering if that peak + related anxiety was the trigger...

now I've described it. please help me providing the best care I can

for my mother? She Turns 60 in 7 Months, and I know whe is looking

forward to experiencing it.

- are there any alternative treatments that may prolong my mothers

life

-or does anyone have knowledge of someone who has beaten or extended life with this Cancer, what did they/you do to achieve that

- are there any special dietary things we should focus on - should she

exercise in some way( yoga, weights, breathing??, whatever), even

though she seems totally exhausted constantly( she hasn't exercised

much before)

- Are there any clinical trials ongoing or about to Start, that we

could get involved in.

-any tips on how to get maximum response from the chemotherapy

I am forever greatful for any help I can get, every extra day My

mother and I can spend together will be worth alot to us both.

thank you all in advance

Jamie

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Jamie,

my dad was given 4 months to live WITH treatment and he proved everyone wrong. It can be done. I don't agree that SCLC could have taken 2-3 years to develop as this type of cancer grows SO QUICKLY and if left untreated, increased growth is DOUBLED in approx. 30 days. Time is of essence in terms of treatments.

Many people choose to look at LC as a chronic disease. Taking care of each tumor, lesion, mass, side-effect or other health issue one at a time on this continuing journey towards stable disease or even remission.

There are alot of folks here who have lived for a long time with this disease. The most important thing is to get as much info about your moms med. condition that you can. Let everything you can about this disease and the treatment options. ASK tons of questions to the medical providers and demand the best care for your mom. Keep them on their toes, unfortunately you (your mom) are your only advocate. ANd HOPE, you must have hope- because that is what carries you through.

There will be more posts after mine with great information. I just wanted to welcome you here and let you know that we know how you feel and that you are not alone.

God Bless,

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Welcome Jamie. I see you are in Sweden and this reminds me that people all over the world are being stricken with lung cancer. There are lots of people here with lots of good information. I did not have small cell lung cancer but in our support group we have members with extensive SCLC and they have been doing well for several years. Keep us posted. Donna G

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Guest bean_si (Not Active)

Jamie,

Please think of getting another opinion. I have read again and again of people diagnosed with only a few months to live who are living years and years later.

I to have SCLC. I take some supplements that seem to have helped my immune system. I take Kyo-Green powder, a teaspoon mixed in water. This is supposedly very beneficial and has helped many people. I take acidophillus to control yeast infection which is common with cancer and the treatment. I drink Essiac tea which also has a wonderful reputation in the complementary medicine area. I drink also banchu twig tea or kukicha twig tea.

I take tai chi but chi kung (videos everywhere) is supposed to be better. It somehow helps with the lymph system and studies in China have shown tremendous increase in survival in cancer patients using chi kung. Chi Kung can be restful and refreshing and easy for a klutz like me to do. Tai Chi can be too frustrating at this point.

I also take B-100 complex, milk thistle and dandelion for my liver. I take also Vitamin C, E, Magnesium and many others. I may have only a statistical 1% chance of beating this disease but I'm fighting every inch.

I do meditation while using a personal CD playing such CDs as "Healing Mantras". This helps me tremendously. I am amazed at how it almost automatically brings me into a state of (near) relaxation.

I will pray for your mom and for you and your family. Take care.

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Jamie - this is Karen, David C's wife. I often log on with his username. He was diagnosed with SCLC in March 2003 - just a little over a year ago. His was not extensive like your Mom's (his had not spread out of lungs, although he did have a big tumor on the lymph nodes between his lungs), but take heart in hearing that he is in remission, in fact, the first CT scan after his chemo and chest radiation were over showed no evidence of cancer - just last summer. Another thing, SCLC is almost NEVER operable, so the fact that your mom's tumors have spread like spider webs really shouldn't be an issue - the chemo and radiation should get to 'em. The good news is that SCLC responds, in most cases, very very well to chemo and radiation.

Dave's oncologist told him that this type of lung cancer is almost always caused by smoking. Dave was only 38 when diagnosed and had smoked for about 20 years. But that should not matter either - I mean, it may have caused the cancer, but at this point just consider it irrelevant. I will tell you that Dave's oncologist told him that if he ever smoked again they cancer would likely return and nothing he could do for him would help. So hopefully she has quit, that will definitely maximize her treatment I believe. Needless to say, Dave hasn't touched a cigarette and I know he never will.

There are lots of survivors on this board who have or have had extensive SCLC. And there are others, like Katie's dad, who lived well past the time the doctors gave him. I also don't like the idea of giving a person a limited amount of time to live. Anything is possible, especially with a positive attitude.

Keep us posted, OK?

God Bless,

Karen c.

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Statistics don't tell anyone how a specific individual will fare. Don't worry about what caused the cancer - focus on how to help your mom get better.

Quitting smoking will help, but it's a huge struggle for many. Your mom may benefit from antidepressants to help her quit.

There is hope for remission and disease-free time, sometimes for many years. Please let us know how things go.

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Jamie,

welcome to the board, sorry you have need of us, but since you do it is good to have you here. I, like your Mom, have extensive stage SCLC. I was told 4-6 weeks without treatment and 8 to 10 months with. I was told it was inoperable and that since it was extensive thay would do no radiation. The good news is, that with SCLC, it responds really well to the Chemo combo your Mom will be having. The trick is to keep it in remission after that. Make sure your Mom has good nutrtion, and encourage her to ignore all that statistical stuff and the amount of time that the Dr's say she has. Each case is different and new treatments are coming down the pike as we speak. Don't worry about assigning blame, your Mom didn't deserve this disease, even if she did smoke! Your best bet to help her is to be there for her and make sure she has the care she needs. Good luck with it!

Blessings

Betty

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I also have sclc and while mine was caught while it was just 1 tumor, I have since developed mets to the liver and lymph nodes. Mine responded very well to the Carbo/vepisid combo and that killed off the original tumor (along with 31 radiation treatments). The second round is doing well for my lymph nodes but not so good for my liver. We are still working on that area.

Faith in God and a positive attitude are helping me deal with this and get through it. I think you will find most people have developed a stronger relationship with God either for themselves or in praying for others. Aggressive Doctors help also. Mine have never given me a time line of when I am going to die because THEY DON'T KNOW! The stats say I had 5 - 8 months when I was dx'd, that was 10 months ago. So much for stats! I am still here, working every day, playing with my Grandson every night and loving life!

Your family is in my prayers.

God Bless,

MO

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My sis was dx'd in 12/03--she had a chest xray one year before & there was no evidence of tumors, yet when she was in the ER on Thanksgiving '03 for atrial fibrillation,the main tumor, in the lung was 9 cm.---that's how fast it grows. She also had several lesions on her liver. She's now on her 6th round of chemotherapy. I like the fact that her oncologist is giving her all the treatments that are feasible, is in constant communication with her, and did not give her a prognosis of a certain number of months to live---how can any human being predict something like that??? She is having side effects from the chemo such as fatigue, elevated blood sugar and low red & white bloodcell counts, but her appetite is good and she is mostly positive about her treatment and her future. As a previous writer stated, it's helpful to look at SCLC as a chronic condition that needs management---for me, that's realistic & helps prevent me from panicking & getting depressed, which won't help her. P.S., my sister is a long-time smoker, & has never been able to give it up, till now, no matter how hard she tried---but it's really pointless to expend any energy in thinking about how your mom got the SCLC. My sister was beating herself up over that at first, but then decided to focus only on getting better. Best wishes to you & your mom

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http://www.clinicaltrials.gov will give a list of clinical trials in the united states. Not sure how to find them in sweden.

a platinum chemo with etoposide is pretty standard here for sclc

cpt-11 + platinum chemo has shown good results in Japan and is sometimes used here.

Topotecan is used for 2nd line

Gleevec is being tried in clinical trials

I am not a Dr, but this may give you some info discuss with your Dr or as a place to start looking.

If you go to the clinicaltrials.gov website and type in SCLC in the search it will show a lot (but not all) of the drugs in clinical trials in the US

Take care

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Someone once told me that statistics were a guideline. A guideline for what???? A guideline for making you CRAZY with worry. Like everyone said previously, no one can predict how any other person will perform with this disease. Never lose hope. Always ask for a second opinion and continue to live life to the fullest.

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Im so sorry for your diagnosis, my Mom lived 5 1/2 months, had a huge battle with chemo and radiation, take time to spend with her, because this disease is horrible, Im not trying to say, don't fight, fight with all your heart, but just take time each day to show her, cause I am only without my Mom now for 24 hours, and I miss her so much, its hurts so bad

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Hi...I, too was just diagnosed with SCLC. It's a tough dx to have thrown at you, but I believe with all my heart that a positive attitude can go a long way in fighting this nastiness (on your mom's part as well as her family and friends).

She'll have good days and bad....I think the fatigue after chemo is the worst part for me. Just being there for her will mean the world.

I know others here have said it, but I think seeing SCLC as a chronic disease that needs constant treatment and observation is a good way to view it. Guidelines and statistics are only numbers written on paper...try not to put too much stock in them....we are all individuals with individual reactions and results.

Good luck to your mom and to you. This forum seems like a wonderful place to vent: ask questions/voice frustrations/get a kind word when you need it most.

Hope to see you often......Mary :)

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Hello - so glad that you found this wonderful place with such loving people. this is the place that you'll come when you don't get the answers you expect; when your onc talks too fast, too high level and too condescending for you to understand EXACTLY what is going on because I believe as you've already heard expressed here -- this disease is as diverse and unique for each person as are snowflakes~~ That has been my limited experience. I am writing for my husband who has extensive smal cell lung cancer and like several here, was given 3-4 weeks to live without chemo, and 5-9 months WITH the chemo. He did explain statistics though: imagine 100 people lined up with the same disease: and out of that disease at the end of one year there are "x" number alive and well, "x" number who didn't fare as well, and so on. And they are -- only statistics.

I can tell you that my husband isn't going anywhere without a fight, and remains willing, thank God, to listen to second opinions, to be open to new thoughts and possibilities and believes that until they say that last farwell, there is always always hope for remission [ask our Betty!]; for miracles and for the gift of another day. After all, no matter WHAT we face, each day really IS a gift~

So pull up a chair, make your self at home and start reading, asking questions and taking notes because knowledge is your power to endless possibilities and infinite hope~ I hope you will find that here as I and so many others have.

Beth

===================================

Husband diag. 12/03 w/Stage 4 SCLC

primary to the lungs, secondary to liver with mets

to bones and spine.

13 treatments of carbo/taxol with a 20% reduction;

3 weeks off due to low platelets and neuropathy.

3rd week they took baseline and although low started

CPT-11.

Neuropathy somewhat tolerable; husband back to work

1st day today in three weeks!~ Hope abounds --

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Hi All

Firtsly let me express my sincere gratitude for all of your kind and informative answers, I was very moved when I saw the replies the first time, That so many people care enough to reply. Thank you all.

Since my last post my wife and I have packed up and gone "home" to be with my mother.

When Diagnosed my mother initially told us all, that she was so glad the cancer was not caused by smoking, because that would feel "troublesome". after having spoken to her doctor, he stated he had clearly explained to her that the cancer is most likely related to smoking... Since I don't have any wish to add to my mothers guilt, I thought I would let her continue to believe this is the case, but since she has gone back up to almost a pack aday of smoking... and when I hint towards it perhaps not being the best for her, she behaves as she always has towards those comments, "Yeah, yeah, whatever, let's not talk about it." I am at a loss.

Since I really like the idea of treating this as a chronic condition, I am assuming, the faster she quits the greater her chances of survival. Is this correct or will continuing to smoke, hardly have an effect?

As for fighting, I can't really get through with my attempts at suggesting strategies, she only says she is too tired, maybe later,don't stress me etc.

I am panicking, because I can't get through and I can feel the days slipping away.

I get the feeling she has given up, and is set on living 6 months, period.

As for mom's condition, she has gone through first round of chemo, another round in about 1 week, she seems pretty up, and has been very chirpy for a few days, which is great.

I am assuming the test values will come in this week, and will tell us what her response to the treatment has been.

sorry for my gloomyness, I guess I just feel powerless...

Thanks again for your help,

Jamie

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Jaimie,

Yes it would be best if she quit smoking. Having said that, it is a personal decision that you can not make for her. But tell her the truth about it...gently. Then let her decide it from there.

Go with her to the Dr's and ask the needed questions, explain to her that you are her health care advocate and you are making sure she gets what is needed. Research everything and ask lots of questions. Keep your spirits up, you need them to fight the beast! Good luck

Blessings

Betty

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In the case of my medical team, they will not treat those who continue to smoke. They say the chemo does not work as well with people who are still smoking. I quit the day I started chemo and am very glad I did but it IS a choice that has to be made by the smoker.

Your family is in my prayers.

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Guest Phyllis

Hi, I am sorry for what you are going through. My neighbor just went through h--- with a 6 cm tumor in her esophagus and into her lungs and is fortunately now doing better. However, she still smokes. She said she was about to start Iressa and I told her it may not work as well if she continued to smoke.

I used to smoke 2-3 packs a day, but had to quit when they put me in a medically induced coma. That actually was good in that I got all of that stuff out of my system without realizing it. I kind of miss all of that morphine sometimes. However, I have now developed an allergy to cigarette smoke. I can't stand to be around it cause I just start coughing and the mucous. Lord. But I can also understand the craving. I can still look at someone smoking and remember the feeling. It is hard to be too judgemental especially with the stress.

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