What treatments work best for SCLC?

Hello everyone. My name is John, and I need help with my mom's SCLC that is only somewhat responding to the chemo. My mom was diagnosed with SCLC-ext in late April 2008, and will complete her 8th and final round of chemo next week (drugs being used are carboplatin and etoposide). She initially had a spot on her right lung, and two spots on her liver. A cat scan after the 6th round of chemo showed only small reductions of these spots, and unfortunately showed there are three new small "nodules" on her lung. It's good news that the cancer hasn't spread a lot more, but if the chemo hasn't done a better job, what next? The oncologist doesn't appear to be suggesting any further treatments. She has not had any radiation yet, and my dad is a little wary of doing the radiation since he assumes (correctly or incorrectly?) it kills other tissue in addition to the cancer it is targeting. My mom is 77 years old, and my fear is that she may be resistant to any further treatment without some confidence that it will be worth going through. Aside from getting up to eat and occasionally shower, she has been bedridden throughout all this partially because the cancer wasn't discovered until after two months of her health declining and incorrect diagnoses, the last of which was that she had pneumonia. She was quite depressed at the start, but has been in better spirits for the last couple months. As I'm sure all of you would probably attest regarding your own parents, my mom is truly one of the best people I'll ever know, and I'm not ready to let her go any time soon. I know in the end it's my mom's decision as to what treatments she wants to go through, but I want to make sure she has the latest and greatest information regarding the treatment options, and I'm not 100% certain her oncologist is offering or maybe is even aware of the best solutions for her particular situation. Yesterday I found this site and read some of the discussions you're all having, and I have to say I have renewed hope that some of you will be able to offer insights that will help me extend my mom's life beyond what the current outlook suggests. The positive attitudes you all project and your willingness to help are really quite inspiring. Let me say up front I appreciate whatever any of you can tell me, and I'm sure I'll start spending some of my free time on this site offering whatever I can to some of the concerns being posted here.

Thanks and take care - John

By Marine
Posted October 2, 2008 at 4:27 pm

I was dx with ext-sclc June 11th. Had 4 rounds of carboplatin & etoposide. After 2 treatments, PET showed spot on liver gone and spots on rt.lung greatly reduced. After 4th round, PET showed no change (stable) so switched to Taxoteere & Avistan once a week. Each person is different and their reaction to the cemo is different. Hang in there and your onc will find the correct coctail for your mom.
Skip

By who-me
Posted October 3, 2008 at 12:49 am

Hello again John,

My mom has a similar diagnosis, SCLC-ext w/ mets to bone and lymph nodes. Same chemo, but will only have 6 rounds and possible preventive radiation. We are headed to a LC specialist for a second opinion. Chemo has worked about the same for my mom, so far.....
Get a second opinion, ALWAYS, and a third or fourth can't hurt. Most onc's treat many cancers, try to find a specialist in LC.

Best wishes,
me

By barbsdaughter
Posted October 3, 2008 at 8:03 am

Hi John
I highly suggest a 2nd opinion You need to have faith in your oncologist and I can tell by reading your post that you do not. My mom was diagnosed April 2, 2007 with sclc Unfortunately, she passed away March 12 of this year. I have learned so much from this site. It really is incredible My mom was on the same combo of chemo that your mom is but also had radiation as well I know that not everyone responds the same to the chemo and if one combination doesnt work, another should be tried. Again, please get a second opinion ASAP You want to fight this beast with all that you have

By claires
Posted October 3, 2008 at 9:07 am

There are many other drugs; failure with one does not mean failure with all. If you choose not to get another opinion, question your doctor about the second or third line treatments.

What kind of quality of life does Mom have if she is bedridden? Possibly, this is why the onc isn't more positive. Can she gradually resume daily chores? There should be a reason to wake up every day. How is her blood holding up?

By PhyllisW
Posted October 3, 2008 at 10:27 am

Hi John. My husband Stan had been diagnosed last Nov. with a large inoperable mass of SCLC on the left lung. After 6 rounds of etoposide and cisplatin, he was switched from the etoposide to Irinotecan and had about 9 rounds of that combo. His ct/pet scan showed nothing cancerous in the lung (in Aug.) and there are a few lesions (maybe 6) in the brain, which are being treated with 14 doses of radiation, daily, until Oct. 9. We're hoping this will do the trick!!! See if your doctor(s) can try this combo---it seems to be the latest in sclc treatment,which works. We'll pray together, and lots of luck. Please let me know how this works out.
Phyllis

By nkb
Posted October 3, 2008 at 10:36 am

John, Just wanted to tell you my story and hopefully give you something good. I was diagnosed with sclc in May 2007. I recvd the same drugs your mom is receiving plus I did have 33 radiation treatments as well as PCI to the brain as a preventative. As of this date, all my scans are clear with no sign of the cancer. I am 55 years old.

I had a tumor in my left lung and two lymph glands affected between my lungs. I did not have a PET scan until after all treatments were over. Yes, I did have some scarring in my lung from the radiation, but it doesn't give me any problems. The radiation (33 treatments) was given concurrently with the chemo (beginning with the 2nd round of chemo) and the brain radiation was given a few months later.

So, on a positive note, I'm doing great after 9 mos. following treatments. I had some down days and still have a little fatigue, but I just take an extra nap.

I hope this helps. There are a lot of good stories out there with good results like mine. It wouldn't hurt to talk to another doctor if you feel you should. My prayers are with you all the way!

nkb

By Marg
Posted October 3, 2008 at 11:46 am

John,
Sorry you have to be here. My husband, 51, has ext sclc, mets to bone and liver. He had 6 treatments of the same chemo you mom has had, along with radiation to the chest. Then 3 rounds of topotecan and preventitive brain radiation, and now is on Taxol. Taxol is working great. Everyone is different. What works for one might not work on others.

My advice is to talk very honestly with Mom and find out how much she wants to fight. At 79, my mom dx with breast cancer, had a mastecomy, radiation. Then 9 months later bones started breaking. She was hospitalized and passed away in 4 days. She decided it was time to go to Heaven. It was hard on her children, but looking back, the right decision.

Prayer has been said for you and your mom.

Marg

By jadams
Posted October 3, 2008 at 12:26 pm

I had almost the same treatment as nkb. I really feel the simultainous radiation is a key factor. My tumor was reduced 50 % before 2nd chemo treatment. BUT I'm sure age plays a factor there (i'm 57). Perhaps the onc doesn't believe she can handle radiation. It can be pretty rough
Best wishes
Julie

By jmichelle
Posted October 4, 2008 at 11:06 am

Hi John,

I have to agree with the others that you need to get a second opinion. The attitude and actions of the doctor is key to treatment and if you feel she is not doing everything possible for your Mom then find a new doctor.

With that said, my Mom was diagnosed w/ SCLC summer of '06. She had the same chemo as your Mom and radiation both to her chest and as a preventive measure to the brain. Her tumor shrunk significantly with the chemo and completely went away after radiation! Unfortuately she had a recurrence in the opposite lung last summer and went on a 2nd line chemo drug, Taxatore. She also had radiation again and I am happy to report that as of 2 weeks ago ( her 9 month scan) showed no evidence of disease!!!

I am so sorry that your Mother has to go through this but there is hope. Keep the faith, John! Your Mom is so lucky to have a caring and devoted son.

Take care!
Jodi

By diamond
Posted October 4, 2008 at 12:55 pm

I am new to this site and am not familiar with the accepted protocol of posting. I cannot respond to John's situation because I have not yet had my first chemo treatment. I went through I guess the usual signs--fatique, lost of appetite, and occasional aches of the joints. General family practioner suggested gall blader; ultra sound said severe liver irregularities; cat scan confirmed ultra sound; initial ono suggested probably non-small cell of liver, which originated in right lung with small growth; biopsy ordered, which indicated small cell extended in liver but also some non-small cell. All results and medical history reports sent to Duke University Hospital for a second opinion, where I was informed on the combination of small cell and non small cell in liver--extended (I guess it will take a while to write this stuff in abbreviated form).

I am to start my chemo treatment on Oct. 13--two days after a highly desired fishing trip with my family. I will be on the same drugs as John's mother, and I was informed that if there was shrinkage, I would receive cranial radiation. Like all on this list, the hard part to deal with is the published stats and prognoses, which my daughter tells me to ignore. I always knew there would be an end but I hate being told the timeframe--how do all deal with that--ignore the stats or what?

Also, because of my career, I have friends all over the world who have been giving me a lot of friendly advice, particularly about exercise, diet, and nutrition. One Chinese friend advised me to stay away from sugar and particularly red meat. I can easily do without the red meat but a cup of tea without sugar is not very appealing. What have been the experiences of individuals on this list regarding exercise, diet, state of mind, ignoring the stats, and general nutrition? Sorry for the long message, but like I said, I am not yet familiar with the protocols of this list (e.g., it appears that no one uses their full name--is that one protocol?).

By spot24
Posted October 7, 2008 at 7:32 am

I would take the advice of your Chinese friend and consider other options to sweeten your tea. We went to Duke as well for a second opinion and it confirmed the first onc. I think from what I have learned from the this is that everyone is different. Try to focus on your treatment plan and what your docs believe what is best for you (age, level of cancer, etc.). There are a lot of people living out here with this type of cancer and we need to find them.

Try to only take in the positive information and leave the negative things out. Focus on health and healing.

By john192837
Posted October 7, 2008 at 1:14 pm

In response to claires, her blood is holding up pretty well so far. As for her becoming more active, we're trying to encourage her, but she was pretty well knocked down after the couple months of declining health before she finally got the SCLC diagnosis. And the chemo, which was started right away, appears to be keeping her down physically. I would like to think if we could give her more encouraging news as to her treatment options to beat this thing, she might be better able to have something to look forward to (as you suggest would be good). Anyway, thanks for your thoughts. - John

By claires
Posted October 8, 2008 at 8:38 am

Some things that help me Maybe they'll help spark your ideas.

Listening to audio tapes from the library. The player is really inexpensive.

Family visits that obligate me to behave better than I would like to!

Reading magazines (so many to choose from)

Revisiting earlier interests (for me, painting, music, helping grandchildren with school

By rtcavin
Posted October 15, 2008 at 1:20 pm

Recommend you get information from the American Cancer Society on treating lung cancer. They have all the 'normal' drugs listed that are used for treatment.

Also, as the others have said, a second opinion is worth doing. I recommend the Cancer Treatment Centers of America.

By CeeAnne
Posted October 17, 2008 at 10:06 pm

Hello. This will be my first post, also not sure of the protocol, but I hope it may help.

To Diamond; First, I want to say that our oncologist, while recommending a good diet, did give the "go ahead" to eat whatever my husband could stomach, including everything that may even be a luxury or "bad", for example, milk shakes, gravies, carbs (alot!), etc. Red meat was important for the protein to build the red blood cells. Liver, UGH, was recommended. Calories do not count in this fight; weight is needed because it is so easily and quickly lost. While my husband's appetite did remain pretty good, the chemo itself caused almost 50 pounds to drop off. Also, ignore the stats for sure.

Second, last year when my Mom was dx with SCLC, she was treated with both Cisplatin and Etoposide, 6 rounds, plus rads. While she was fine with this at 5'1" and 97 pounds (69 yrs young), my husband who is 6'4" and 230 pounds (52 years very young) cannot handle Etoposide. Everybody is so different in treatment options. So far all 2 scans that my husband has had have come back clean, but my Mom is watching over us. Your Mom's age might be a factor on why the doctor seems unconcerned. You are in the position to ask any question you like. Write them down as you think of them and put them all together for the next visit. I have realized that it is ok to tell the doctor "I don't understand..." until I get an answer that I DO understand, whatever it may be.

Good luck and God bless all of you.

By john192837
Posted November 3, 2008 at 11:46 pm

Marine,

You said you switched to Taxoteere and Avistan after the Carboplatin and Etoposide stopped being effective. How did the Taxoteere and Avistan work for you?

- John

By cad1223
Posted November 4, 2008 at 7:02 am

Hi John:

My dad also had extensive sclc and had the same chemo as your mom for his first line of treatment. His second line of treatment was Topotecan, which he didn't respond well to, but many others respond very favorably to it. I also believe I heard that it is now available in a pill form. It's worth checking into. Always remember that each person is different. After three lines of treatment, we came to find out that dad's cancer was resistant to any type of chemo.

Good luck to you and prayers are with you and your mom.

Cheryl

By KellyLee
Posted November 4, 2008 at 8:33 am

Unfortunetly, I have the same story as the last post from Cheryl.
My mom was diagnosed Feb. 08 and has been through 3 lines of treatment. It was also decided that her cancer was resistant to chemo. She did have WBR and radiation to her spine in two areas. We believe the radiation worked. She is no longer receiving any treatment.
Point is...I highly recommend getting a 2nd opinion. If the first line of treatment doesn't work, there should be at least two more! My mom's oncologist said she could try a 4th one, my mom just choose not to.
Where is your mom receiving care? If it's not at a Cancer Treatment Center of America...get your 2nd opinion there...if you can. We moved my mom up from FL because they were only going to do 1 type of Chemo and wouldn't do any scans! Even though they found nothing to work, the UofM (MN) Masonic Cancer Clinic (which is a cancer treatment center of america and a research school), did everything they could to find something!
Good luck to you and your mom! I wish you well.
Kelly

By Marine
Posted November 4, 2008 at 10:58 am

John,
As of yet, I don't know how the taxoteere and Avistan are working. Have had 4 infusions and will take a PET this Friday to find out how it is working.
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