Anyone had unconventional or experimental sclc treatment?

[teriw]

Hi everyone,

In looking through the profiles of those with sclc, there seems to be a fairly standard approach to treatment. Although, I've noticed some differences in when/if radiation is used with extensive sclc.

I'm wondering if those who are battling extensive sclc and/or their loved ones might be willing to share if they have had unconventional or experimental treatment that they feel helped them. That could even mean radiation when it wouldn't have been a typical treatment.

Bill's onc is of the opinion that we should wait until the chemo cycles are completed and have a final PET/CT scan before thinking about radiation. He might very well be right, but we've decided to go see our radiation onc next week anyway for his opinion.

Also, any thoughts on PCI?

Thanks in advance.

[ztweb]

Teri,

Great posting. I am looking forward to seeing the responses. Like I said in that other post, my dad's onc told him that they needed to get it small enough that radiation would be successful. They started this radiation before they did the MRI, so I don't know what that says about it. Dad is at Mayo, and I truly can say they are AMAZING! They do more in a day than most health facilities take a month to do. When I read my own dad's profile, I see how lucky he was to get diagnosed and start treatment within a few days. Many around here have to wait a week...well, according to my dad's onc, days matter with small cell because it grows so fast.

PCI was one of the hardest decisions to make. I say this because my dad really is a young 67, and we were told that everyone who get's PCI does see some kind of memory loss. She did tell me that PCI would NOT cause him to forget who we were, but more the typical things that come with old age. Mom already takes care of dad in regards to meds, finding things (don't all women do this ) etc.

He decided that in the end he would want to know that he did EVERYTHING he possibly could do for treatment. So far we have not seen any of the side affects, granted most "statistics" say you start seeing this after about one year...but around here, we just look at dad, and not at statistics.

My dad is a miracle. We pray together as a family, and we pray for the miracle of healing every day. Of course, I hate that feeling that the ball could drop at any moment, but for now, we are blessed.

Best of luck with your decisions.

Blessings,

Jen

[bware21]

Memory loss isn't a problem for me -- the sooner I forget about all the BS I've been responsible for in my life, the better.

Bill

[Sheri]

Teri,

From what I've learned they only radiate the lung for curative purposes. If Bill has distant mets, chemo is the only option. I suppose if the mets are resolved, they may consider radiation to the lung. His lesion(s) needs to be limited to one area that can be hit with one radiation "field".

If he achieves a complete response to chemotherapy, PCI should be an option. Because Small cell does have a propensity to travel to the brain, PCI can lower that likelihood. Stay strong and keep asking all the questions!

[bware21]

This is where this post should have been -- duh!

By the way, Jen ... me thinks your Dad is going to get through this and come out the other side with something he didn't even know he had -- it'll be a personal vision of his own strength of character, and that'll make him happy inside.

Some are luckier than others insofar as they have incredibly powerful support from their family and friends. Me and your Dad are fortunate enough to be in that group. A lot of other people too, but for those less fortunate, thank goodness they have the family that this Web site is built on.

Bill

--------------------------

And Sheri,

At the end of your profile you say, "I know this sounds crazy, but ..."

The "crazier" the better, I say.

Bill

[teriw]

I neglected to mention something else about why I'm asking this question. A couple months back I partipated on a Lung Cancer telephone conference sponsered by CancerCare. Maybe some of you were on there.

As usual, very little time was spent on sclc. Thankfully, the very last person to ask a question asked about new treatments for sclc. Other than other chemotherapy drugs in trials, this doctor mentioned the use of Avastin. I can't find anything about that for small cell. Anyone know? Is it in a clinical trial?

Thanks again (and Bill, stop hijacking my post! )

[Ry]

Hopefully John will see this post- he is pretty up on this type of information. You may also want to ask Dr. West. In reading your profile it doesn't show that you have had a 2nd opinion--maybe you need to get one just to see what else is out there.

[Ry]

Teri--

We call that a post-jacking.

[dadstimeon]

I found this--Dr. West mentioned trials being done with Avatin and SCLC. Might want to PM him or go to the site below and ask him. Hope this helps.

http://onctalk.com/forum/avastin_topics ... recent=145

[EastCoastLadi]

Teri (and Bill!),

We ( meaning my husband and I ) have been this road and sometimes I feel like with this type of sclc if after 1 year you're considered an "old-timer"...

What I can tell you is that we had discussed PCI in the very beginning before my husbands' cancer went to his brain, so he went straight into WBR, and of course short term memory loss, extreme fatigue.

Did it help, yes, but unfortunately the mets came back, so round 2 was low dosage IMRT radiation, to the brain and chest. Results, very small change, when he stopped, boy did the mets come back fast!!!

As for anything experimental, I hate to say, like we all know SCLC isn't as heavily researched as other types of LC. Even I had a very respected Thoracic Onc. in Boston, tell me he was ashamed to admit the lack of research and trials for sclc.

But still having said that, there was still some trials and onc. trying different things. I can tell you know that my husband has only been doing oral etoposide, 50 mg 2x daily, 10 days on and usually 10 days off ( but this time we are waiting for his blood cts to go up). This treatment seems to be working very well w/ my husband... 90 percent shrinkage in tumors in lung and adrenal gland...also 50 -60% shrinkage in size and numbers of mets in brain. So the philosophy is keep on going w/ a good thing....

I wish I had more answers, I look at my husbands' onc., he knows I like to pick his brain about this...

Grace

[donnalee]

When my husband initially was diagnosed with limited SCLC, he had chemo and concurrent radiation with the intent to "cure". After developing brain mets and now adrenal mets he is being treated only with radiation(cyberknife). I am somewhat surprised that his medical oncologist has not recommended more chemo, but he says that if the disease is in a localized area, then there is no need for systemic treatment.

This seems to be a different approach than what many here are doing. It seems like most of you have had second and third lines of chemo. It's hard to know what is the right thing to do. His original oncologist (we moved to a new town a few months ago) had talked about starting him on Tarceva or Taxotere at some point. Personally, I think cyberknife is easier on the body than chemo and am happy with this approach. I just hope it works.

[teriw]

For all the information you can find out there (what on earth did we do before the Internet?!), you just can't beat personal experience. Thanks to everyone who has answered this so far.

[dchurchi]

Hello Teri and Bill,

As you have learned through our PM's Alan's treatment

has been anything but by the book. As Chemo was so

toxic to his body (almost killed him) Alan has had

almost exclusively radiaiton treatments. His medical

oncologist mentioned this during out last visit that

Alan is a very unsual Extensive SCLC patient.

His radiation oncologist has added Hyperthermia treatments during this newest battle.

What little I was able to find on the internet, it

apparently heats the tumor to approx 44C which I think calculates to about 112F.

Helping to kill the cancer cells, but sparing healthy cells.

The heat apparently deprives the cancer cells of much

needed oxygen, there by destroying them.

Alan had brain mets before we could make a decsion on

PCI, so Alan had WBR.

Not sure if any of this information has helped, but

wanted to give you what I had.

you two take care.

[Bev'sSister]

The little bit that I understand about my sister's Radiation, is this: Her PET and CT scans came back 100% Resolution (Not sure if that is the right term-but I think it almost means NED). Her onc wants to continue with her chemo, because she had only 4 treatments at the time. She will have 2 more chemo treatments and 28 Radiation treatments, concurrently. After 19 Radiation treatments, she will be scanned again.

Her ONC is know for being very aggressive with treatments and has had pretty good success.

[teriw]

Hi Bobby,

You may have said this in another post -- but do you know if your sister's radiation is to the chest area only?

So glad she got the coveted NED!!!

[Bev'sSister]

I think it is only to her chest. I am not absolutely certain. I think her mets were to her thyroid and some lympnodes. I do remember the doctor telling us that it looked as if someone took a paint brush and flicked it at her. She had 1 really big tumor and lots of smaller ones.

[wiesia]

Debbie,

The treatment with hyperthermia sounds very interesting. Where is it done ? Do you know how it is exactly done ? Do they have better results with it ?

Thank you.

[leelee]

Hi everyone,

My first post to this site My mother - 71 years old - diagnosed with small cell - extensive, mets to liver in September 06. Treated successfully with Etoposide/Carboplatin - 7 cycles. CT scan 2 weeks ago shows no signs of cancer - 6mm attentuation to liver only - no mets to bone. One more cycle of chemo for total of 8. We live in medical mecca - Boston area....I asked about radiation and PCI - no on both counts per her Oncologist. Radiation as necessary for "consoldation or palliation". PCI - not done with Extensive. Jury is apparently still out on this front - across the country. SCLC - not being researched anymore - as far as I can tell. Not a lucrative disease - stats are down. Down to 13% and not worth the time for pharmaceuticals.

It's worth my time. It's worth your time.

Thinking of you all and reading *every* story. You are all so important and valued and worth vesting research dollars.

Leanne

[Larry]

Hi Terri'

As the Bio will show at the Bottom here i lost my Wife to SCLC and not once was any trial treatment's suggested as the Doc told us that he knew of no Trial treatment's at the time that they were doing for extensive SCLC. Now with that being said a man i know in another town has gone to MD Anderson hoping they will place him on a experimental trial for his SCLC even tho as i understand it his Doctor seemed to feel it would not help but one of the nurses encouraged him to give it a shot.His Cancer had gone into remission and now was in his Brain and i'm thinking Bone or liver. So if i find out any thing on this i'll try and remember to post what i learn....

[teriw]

Once again, thanks to everyone for the info. Even in this tread alone, I'm seeing a lot of differences.

Debbie, thanks as always for all of your information. Hopefully it will help other people out there too, because - as you say - Alan's treatment has been anything but by-the-book!

Leanne, I want to mention that our radiation oncologist told us to come see him regardless of what our medical oncologist said (they can definitely have different opinions). You might want to make an appointment with a radiation oncologist and get an opinion for your mom.

I'm going to be doing some more research myself over the next couple weeks, so I'll definitely post here if I find anything interesting.

[blueherron]

Hello--this is the first time I've posted here, but I've been reading since my little sister was diagnosed with extensive SCLC--with mets to the brain in November of 05. There ARE experimental treatments.

Immediately after initial diagnosis he received six rounds of chemo treatments at University Hospital in Cleveland; followed up with daily radiation to the chest (3 weeks) and brain (4 weeks).

Upon getting her annual pap smear, gyn found ovarian cancer...that turned out to be SCLC. She had surgery to remove the mass and is now undergoing a clinical trial of chemo using Rebeccamycin. Her Onc., Ashwan Dowlati, is a professor at Case Western Reserve, and has been working with this new drug for a couple of years. My sister says she's feeling much better and that the side effects are a lot less severe than the first chem/radiation side effects. She gets her next MRI today.

I'm also aware of a clinical trial at the Moffit Center in Tampa; but she was unable to participate because she also has MS--

Hope this helps.

[teriw]

Hi blueherron,

Thank you so much for posting about your sister's treatment. It definitely helps to know what else is out there and what is being studied. I've never heard of Rebeccamycin, but I'll be doing some research to learn more. Thanks for the clinical trial info too.

I hope your sister receives some good news from her MRI.

[Nova]

The RN at our Primary Care doctor's office is a friend of our family. She sent me this web page a few days ago, about a different approach to treating all kinds of cancer.

Some of it was a little "over my head", but from what I could understand, this doctor found out- during a study in the late 60's-, that cancer patient's have less then average amounts of things like Amino Acid's, etc.

He apparently creates these in a Lab, using the person's DNA, and then "gives them back", via an IV treatment.....

There are success stories, but I'm sure it's like anything else, and would need to be researched before jumping into it. He is FDA approved though, so that's a start.I'm saving the info for my husband, just to be able to check into it if needed....

Maybe someone who has a little better understanding of the process can explain it better.

Take care all,

Nova

http://www.burzynskiclinic.com/

[Larry]

Well i said on the man that was going to MD Anderson for trial treatment's that i would let all know how it turn's out. Well the sad new's is he died before he could go as he got pneumonia and his body was to weak from Radiation and Chemo to fight back.Wish i could have reported differently........