CSN Login
Members Online: 3

SCLC Questions

KevinPDPM
Posts: 2
Joined: Dec 2012

Hello Everybody,
I was diagnosed 2 months ago with Limited Stage Small Cell Lung Cancer. I have been through 3 rounds of chemo: cisplatin and etoposide? VP-16, and 3 weeks of daily radiation therepy. It has been an interesting experience so far. After reading up on the long term prognosis of the disease and assuming that I finish off at least 1 more round of chemo, maybe 3 depending on how well I handle the side effects, and at least 3 more weeks of daily radiation. What comes next, how often are there going to be scans and all the rest of that nonsense and if or when I relapse what then. My Doctors are great and real top notch but sometimes I feel like they are not quite answering the question and I am the type of person who doesn't like suprizes.
Thanks for any help you can give me

dennycee
Posts: 666
Joined: Mar 2011

Hi Kevin and welcome to the ACS discussion board! Have they done a midway CT yet to evaluate the efficacy of the chemo yet? After that there will be scans every two or three months for two years then they go to every six months for three years then yearly. There are many sclc patients who have beat the rotten odds they tell you about. Ignore those. Also there are some new clinical trials coming up for sclc.

Depending on where your tumor is located the radiation will probably cause irritation to the esophagus. The docs describe it as mild, they lie, it hurts like hell but it is survivable. Stay well hydrated and eat what ever you can to keep strength up. After treatment you can focus on diet. If you get a constant metallic taste in your mouth use plastic forks and spoons. I had cisplatin and etopicide and my hair only thinned. If you lose all yours blame theVP-16.

I have nsclc and will answer to the best of my ability and others will be checking in. Forgot to mention that they will eventually want to discuss PCI or prophylactic cranial irradiation. My friends husband has done well with it, and with sclc it does prevent some brain mets. Do you have specific questions?

KevinPDPM
Posts: 2
Joined: Dec 2012

Thanks for answering so quickly. Yeah I have found out about the esophagus problems, feels like trying to swallow a lit charcoal brickette. The docs have made it a little better with a prescription for triple mix. I don't have a lot of questions but most of the sites that I have seen are for Non-small cell lung cancer and not a lot about survivors of SCLC. So far I have been lucky without to many side effects and I hope that this will continue in the future. They Radiologist told me about the prophylactic carnial irradiation but that is down the road a couple of months. I am fairly well aware of what is coming up for the first rounds of chemo and radiation hoping this is it, but I am sure like most people I have my moments of doubt about the outcome all of this but most of the time I am positive it will all work out for the best.

medi_2's picture
medi_2
Posts: 506
Joined: Aug 2009

Hi! I had the same limited sclc and the cisplatin/epitosode (some of the strongest) then the radiation..then pci. I am still a little batty but I was always batty, age brings that on too, not just medicine. Dec. 31, 2008 I got the news. Been great since then and my Doctors call me 'cured'(though some people do not allow that word in Cancerland ;). Let's say definately NED. After treatment, I had a few scans at 3 month intervals...then 6 month, then yearly. next one is in July I think. Anyhow I feel great most of the time and my immune system seems to have repaired itself for now; no flu, colds etc...so I would say to 'what's next'? that whatever you want to do is possible. You've gone through the terror, the treatment; pat yourself on the back and realize you have just escaped alive from a war. Celebrate ;)
Cheers
Medi

carolava
Posts: 7
Joined: Aug 2012

I was diagnosed with sclc in July, had the nodule removed in august, and finished chemo in November.  I felt better after having read your posting because the statistics are so depressing.  You really inspired me to have a more positive outlook.

Carol

carolava
Posts: 7
Joined: Aug 2012

I was diagnosed with scllc in July and had surgery in August.  They removed the top third of my lung.  Nodule was 1.4 cm.  No lymph involvement.  Had chemo.  I can't seem to find anyone who has had the surgery.  Can anyone direct me to other places: sites? articles?

Thanks so much.

dennycee
Posts: 666
Joined: Mar 2011

Promise to come back and visit?  Okay.  Cancergrace.org And Inspire.com.  

Geniecohen's picture
Geniecohen
Posts: 1
Joined: Jan 2013

Hi All,

i'm a newbie and not familiar with how this works. I lost both of my parents to LC, older sister has had 2 bouts, but still alive and kicking. I'm 66 now ( the same age my parents were diagnosed), my lung nodule is 6mm, upper left.  2 years ago it was 5mm and the doctor said is was too small to biopsy.  New doctor is sending me for a Pet Scan and says they can to a biospy.  I am not shocked at this news, but veer from be hopeful that "it" will be caught in time, to total terror.  Any advice will be greatly appreciated.

katenorwood
Posts: 1827
Joined: May 2012

Geniecohen,

Hello first of all !  I am not a LC patient as such.  My dx was adcc of the head and neck.  But I had a scare last month with a tumor that was only 4cm's...they took around 12% of my lower right lobe.  Was not cancer !  I too have a huge family history of cancer.....so I understand the fear and anxiety.  Once you have all  the facts and understand what procedure they are going to do....just go with it.  They can do a VATS which is no fun but relativatly easy to recover from.  (scope)  Have a support system in place to get the facts and answers.  This is so terribly important.  Write everything down....and continue to ask questions here.  These folks know their stuff !  Good thoughts being sent !   Katie

Please keep us posted on the outcome !

mgb
Posts: 2
Joined: Feb 2013

Hello everyone, my name is Mike, I'm 59 years old and I was diagnosed with limited sclc in Sept 2012. It was discovered after a motorcycle accident where I collided with the rear of a truck, totaling my bike. I ultimately had a CATS for internal bleeding and it was discovered. I have gone through the chem treatments & lung radiation which ultimately caused me numerous hospital stays and visits, and the longest for seven days in pressurized room after being transported by Rescue most of which I do not recall. The doctors said it was neutropenic fever. Anyways after this I also had the cranial radiation treatment. I have been having CATS every 4 months because the insurance won't allow/pay for every three months, apparently they dictate our needs. 4 months ago a shadow was detected where the original mass was. Now this time the CATS shows it has grown. I am scheduled for a PETS in two weeks as the doctor wants it's parameters to become more distinquishable (?). I'm pretty worried, when I was initially diagnosed the doctor said I had a one in five chance of making it five years. He also said when "it" comes back it's voracious and they may be able to slow it down alittle but cannot stop it. But I am somewhat encouraged after reading some of your postings and feel bad for others. I was surprised when one (I can't see the name from my posting box) said the doctor had operated and removed the mass. I had asked about surgery back when I was first diagnosed and my doctor said surgery was pretty much out because it didn't help in this type of cancer and sometimes created more problems. Now that it's back(not confirmed until Feb 18) depending on what my doctor says, I am considering traveling to Memorial Sloan Kettering in NYC or Massachusetts General and was wondering if anyone has had any experiences with that or their experiences in the reoccurance of sclc. Everything I read seems to be negative about sclc survivability. Thanks for listening/reading. Everyone take care and prayers are with you.

dennycee
Posts: 666
Joined: Mar 2011

MSK is a great place to go.  Have read many positive things from other survivors.  Please ask about gamma knife for the brain mets.  Please let us know what happens.  

carolava
Posts: 7
Joined: Aug 2012

Hi,

I had surgery for smlc at Sloan in August.  The nodule was 1.3 cm and there was no spread (that could be found) to the lymph nodes.  The surgery was followed by chemo.  Currently I am in a research program at Sloan.  From what I have read surgery is usually not done for smlc because in 90% of the cases there has already been a spread.  I don't know what the future will bring, but would suggest Sloan if you want another opinion.

Best of luck,

 

Carol

Xiaowang
Posts: 17
Joined: Feb 2013

Hi, carol,

 

how to get there as research purpose?

i had a surgery and started chemo.

 

carol

carolava
Posts: 7
Joined: Aug 2012

Sorry I took so long to get back.  I haven't been on the board much.  My oncologist recommended the research project.  I would call Sloan.  The staff is very helpful.  Hope this helps.

carol

csagrada
Posts: 1
Joined: May 2009

To all...

 

I was 42 when diagnosed with limited SCLC, including nodes, in 4/2009. I finished treatment of Carboplatin and Etopiside, Radiation and cranial prophylactic, in December of that year.

I had to have a partial thoracotomy, due to the location of the tumor, for diagnosis.

Doctors will only take part of your lung if there is no lymph node involvement.( This is very rare with sclc ) Otherwise, it is better to keep what you have to fight the disease then to suffer with the loss of the tissue as well.
If you are newly diagnosed, make certain you get a port. This will save your veins and alot of pain and annoyance for you. It allowed me to sleep through blood draws.

The treatment completely debilitaed me. The first few weeks were ok, the last few I could not even get myself in for treatment. My son and my husband had to wheel me in, as I could not only not drive there, but walking from the parking lot to radiation was too exasperating. While I also suffered tachycardia from the tumors, I wouldn't expect it to be much better for anyone else. One of my radiation buddies with the same DX, did not have a heart issue, but was still getting a transfusion and in the hospital for a week with me towards the end. I could get up to use the bathroom or microwave myself something to eat, but that was about all. ( I have a one story house ) Become a strong germaphobe. Don't take chances no matter how good you may feel. It's not doing anyone any favors for people to parade around you because they care. Use Skype if you want to talk to kids, especially. 

One thing to keep in mind, is that everyone is very different. The best thing on your side is your attitude.

This is why Doctors almost never tell you anything. Be positive and always think the best, no matter how bad you feel. Something to keep in mind when you feel low...  http://www.youtube.com/watch?v=TWAuc9GIvFo&feature=share

Do yourself a favor and deny the idea of relapse now. Until that day comes, it does you no good to think about it.

As for ongoing treatment, I had a PET every 4 months for the first year. I am now having a CAT every 6 months. If you have headaches, an MRI of the brain will be done. SCLC is sneaky...it can end up anywhere, but usually goes to the head.

While I don't believe that any one location of hospital is better then any other, there are hospitals that have better access to new drugs. This could be good or bad. The best thing to look for in your care is making sure you get all the support you need. This is usually helped by the individual doctor and their staff. There are some locations that advertise this upfront ( Like Cancer Centers of America ) but my experience was with The James Cancer Institute, here in my home town. They may be ideal, as the whole person is what needs help once diagnosed. I can't say one is better then the other.

dennycee
Posts: 666
Joined: Mar 2011

Csagrada,

thank you for taking time to post your experience.  There is so much negative written about sm cell.  Your story will inspire others to fight.  

carolava
Posts: 7
Joined: Aug 2012

Just reread your posting.  It was so very helpful.  I fee less doomed. Hope you are doing well now.

 

DashfixerJim
Posts: 6
Joined: Feb 2013

Was wondering what the extent of coverage was on your lung when you got treatment, as my mums doctors will tell us nothing, they let us see the xray and it looked like the entire left side was just a white out so we presume no hope for the left lung, my mum couldnt handle the chemo first time round and we had just talked her into the next round and she was really ready for a fight until we arrived at the hospital to be told she might not be able to handle the chemo and she'd be better off having a couple of good last months than going through all the chemo and feeling bad.

I really hate the way people with smlc are left to die in the uk, the doctors here arent interested in fighting for you.

I'm planning to show my mum this site in the hope it stirs the fight in her again, as she really feels she is doomed to die.

she recently just discovered a lump in the lymph node on her neck which i'm told is common but the last xray of her head showed no spread to the brain yet, but its only a matter of time.

Jim

DashfixerJim
Posts: 6
Joined: Feb 2013

MY Mother is having a real hard time breathing and is like a fish out of water most times, she can even walk a few feet with getting totally exhausted.

Just spoke to her GP, he looked at her x-rays and said there is fluid on her lung scans and she should be in hospital having this drained, the problem is these scans were taken 2 weeks ago and he oncologist has said nothing about this....

Could this fluid be causing her breathing problems or is it just the cancer?

She has SCLC in the left lung, and just had a large blast of Radio Therapy to her throat/neck.

She was only diagnosed 6 months ago would cancer move this fast?

 

Jim

DashfixerJim
Posts: 6
Joined: Feb 2013

Doc came today and told my mum she only has a couple weeks at most, it's not looking good for her, this SCLC is a terrible thing, no mercy at all.

And as for the great British NHS, ha, what a joke, completely left to die.................I'm disgusted...

DashfixerJim
Posts: 6
Joined: Feb 2013

Hi All, no need for any anwers here, my mother passed just before 4am this morning, hospital did an x-ray and said her breathing was getting worse because of the huge fluid build up for which they might consider actually doing the chest drain we've been asking for for weeks, however she didnt make it till morning as the pain and the breathlessness was just too much for her to bear.

I'd like to say if anyone in here is British then try to get to America for your oncologist treatmens as it really sucks here, they only see you as a smoker or a person who pretends not to be a smoker, my mother was let down by our supposedly wonderfull NHS system, sent home to die with a chest full of fluid..........

Also if your from Glasgow, and need to attend the New Victoria Hospital, avoid getting Dr Hicks at all costs he is the most unfeeling Oncologist I've ever met and he will do nothing for you.

My Mother was:

Helen Young (diagnosed with Ltd Stage SCLC Nov 2012)

1950-3rd March 2013 RIP

Helen Young

mgb
Posts: 2
Joined: Feb 2013

Hi, this is Mike, I'm the 59 year old guy who wrote the novel above. Sorry about that, I'll keep this one shorter. 

I went to the oncologist yesterday for my reading of the PETSCAN I had on Monday. Well the cancer returned and in just about the same spot. He is starting me on Topotecan with a regime of 5 days of treatment and then 3 weeks off. I asked what he felt my prognosis was and he said if we were able to beat back this reoccurrance it would come back quicker and so on. I asked the dreaded question and he said six to twelve months. I just don't know what to do, It seemed I could fix almost anything (man's way of thinking) but I think I won't be able to fix this. I send my best and my prayers to everyone.

carolava
Posts: 7
Joined: Aug 2012

Hi Mike,

Sorry to hear about the recurrence.  Will remember you in my prayers.  Have you looked for any clinical trials?  Please keep posting how you are doing, carol

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network