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Small Cell Lung Cancer

AnnieNMichael
Posts: 5
Joined: Oct 2017

Hi, My name is Anne. My husband was diagnosed with SCLC in June of 2017. He had a tumor, less than 4cm in his right lung and a small spot in his brain that the tumor board is actually still discussing. It may be a met or it could be inflammation. It is being treated as a met. He prescribed regimen was 5 days per week, for 6 weeks of radiation to his chest. Concurrently, he was receiving infusion for 3 days, every 3 weeks using cisplatin and etopicide. Currently, he is having whole brain radiation which has been 5 days a week, for 3 weeks. His last two treatments are for the next two days and they will be targeted radiation (i.e. Cyber knife or gamma knife) treatments. In approximately 2 weeks, he will begin what are the last two cycles of chemo. Michael's first post-treatment scans are December 7 on his chest and abdomen. At the midway point a scan of the lung tumor showed that it was 70% gone. There won't be a brain scan until Feb. 2018, as we were told anything sooner would be "too soon."

We were told straight up that Michael is on a curative plan. It shocked me. But his initial diagnosis was NON small cell. In fact the thoracic surgeon said it was a garden variety non small cell. Imagine our horror and shock when we got a call saying the biopsy came back indicating the cancer was small cell. We were gut punched. All scheduled surgery was promptly canceled. We were numb. That said, he has been staged neither limited nor extensive stage. He's somewhere in the middle. We know that's not a standard stage, but with the true uncertainty if the brain met, its impossible to call it definitively extensive or limited stage SCLC.

That's overall our background. We would love to know yours, your experiences and about your treatment plan. The oncologist looked at me like I had 5 heads when I was shocked that he used the words "curative plan." In the back of my mind, I wonder if he is trying to cushion a blow or if the treatment plan truly has a chance of curing this nightmare. My husband's attitude is nothing short of amazing. He is strong, he's hitting it head on, he has maintained his sense of humor and has blogged every step of the way, explaining even what things feel like as he experiences them.

I admire his strength so much. Our faith is great and we are told over and over that attitude makes ALL the difference in the world in dealing with cancer. But then there are certain looks I see by nurses, staffs etc that say "pity" when the words small cell lung cancer are used. 

I waffle a lot on "Yeah! We've got this!" And "I'm terrified it he will have NED and it will return." Those feelings are natural, I'm told, so I can remind myself that my faith is indeed in tact...I'm just fearful sometimes.

Please share your experiences and ANY information you can on your small cell treatments. This is long and I'm sorry. I just hoped if I opened up, someone else would. There is SO little information on SCLC out here. That in itself is scary. 

I hope to communicate! One thread had activity in 2003-2004! Nothing really recent. Let's talk! We can help each other.

Wishing every reader peace, blessings and total healing. 

Anne

 

sondrahays's picture
sondrahays
Posts: 23
Joined: Aug 2017

Hi Anne,

my husband also was diagonoised in June of this year, stage 4 small cell cancer. there was no evidence of the cancer being anywhere else. therre was a part of his rib that appeared to be cracked or old fracture that they too could not rule out as possible cancer. We started our treatments here (Columbus Ohio) with a doctor who was convinced my husband did not have limited stage. even though there was not enough evidence to prove other wise. he even tried to tell us it his liver was involved.(IT wasn't) he was only going to give my husband 12-18 months. no radiation just quality of life. I was devastated and so upset at this doctor. I could not understand his lack of wanting to try to go for a cure. we ended having three opinions and finally we ended up at Clevend Clinic. which has been a blessing. my husband was offered radiation/chemo at the same time there. and they said he could be considered limited for the lack of evidence other wise. he responded excellent to the chemo/radiation and he is starting his two weeks of PCI (brain radiation) next week. we are nervous but we also know he has a better chance for survival. small cell if limited does have a chance for a cure! there are draw backs, this cancer is very agressive and can return easily. BUT everyone is different, and if you get the remission, you live everyday to the fullest. that is where we are now. my husband also is a fighter and one of the strongest people I know. his attitude has been we are going to beat this. if you don't get the response from the doctors you like, make sure to get another opinion. if we hadn't my husband would be looking at dying rather than living. best of luck! stay positive. new advances are happening wiht SCLC. God Bless

Sondra Hays

AnnieNMichael
Posts: 5
Joined: Oct 2017

I really appreciate you sharing your story, Sondra. By reading and sharing, we all learn.

Michael finishes up cyber knife radiation tomorrow and that will be the end of his whole brain radiation treatment. He has done well. His came out earlier this summer. Since it was already gone, that side effect of the radiation didn't happen. He has medications to help with pressure in the head, (which is brain swelling), medications for pain, which he hasn't needed, and of course the usual nausea/vomiting meds. He's only needed those once. 

He will have two additional cycles of chemo in a couple of weeks. Learning to integrate back into our normal schedule will be interesting. But we keep ourselves laughing, busy and focused on winning. As I said, I have those moments that I feel scared or feel like crying...and I give myself permission to be with my emotions, but I don't stay there. 

There is too much we want to see, do and experience and those things keep our minds more than occupied.

I will keep you and your husband in my prayers. I'd love to hear how he does with PCI. 

-Anne

 

sondrahays's picture
sondrahays
Posts: 23
Joined: Aug 2017

Hi Anne,

how is your husband doing? Daivd finished his PCI and so far most thing noticed is the fatigue. he does seem to be tired a lot. but it is improving each day. not much more noticed from having it so far. we go back in Jan for a scan to be sure the cancer is still gone. doctor said if David could get to the 12 month mark cancer free they would consider it a cure. sorry for the delay in response.

Julez
Posts: 9
Joined: Aug 2017

Hi Sondra My husband was diagnosed with extensive small cell this past August. He has a small spot on his bronchial and 2 tumors in the liver. We also go to Cleveland clinic but the one tha is located in  Sandusky. Who is your husbands Dr? Was your  husbands just in one lung? 

sondrahays's picture
sondrahays
Posts: 23
Joined: Aug 2017

Hi Julez

yes his was just in one lung, the left lung. and he see Dr. Velchati and Dr Stephens, which both to us have been excellent in his care and talking to us and helping us get through this! how is your husband doing?

please feel free to email me also, sometimes it is hard to get on here. sondrahickman@yahoo

survivingsu's picture
survivingsu
Posts: 134
Joined: Apr 2013

Hi Sondra,

I do not know if this is helpful, but in case...8 years ago I had small cell undifferential uterine cancer.  I was told it was very aggressive and rare.  I had simultaneous chemo and radiation treatments, then surgery, then follow-up chemo.  There is apparently a lot they can do to treat small cell cancers.  I'm grateful & glad to be here.

Wishing you & yours the absolute best,

Susan

carly2287
Posts: 1
Joined: Oct 2017

hello, I am new to this, but my mom has been recently diagnosed with extensive small cell lung cancer. She goes for round 2 of chemo tomorrow for 3 consecutive days. Has anyone been trialed on the new drug Rova T? Or has anyone heard of a Dr. Jason Williams/Dr. Mark Rosenberg? I stumbled across these names on a website called “inspire” where patients/families had talked about small cell lung cancer and those names were mentioned as far as alternative cancer therapies and trying new drugs etc. I am trying to search all that I can to ensure everything is being done that’s possible! Thank you all and keep fighting, NEVER ever give up! I will not allow my mom to ever give up! God Bless!

Adventureoflove2
Posts: 1
Joined: Oct 2017

I’m new in this process.. my Dr said my SMLC was rare and started me on a drug alecensa. I been taking it about 3 months feeling good with just a little side effect.  Can any one share with any positive expectations.  Thanks 

libralady9
Posts: 1
Joined: Nov 2017

Hi there. I'm a bit confused as I thought this drug was for non-SC. I'm so happy that you are feeling good.

adinisio
Posts: 3
Joined: Oct 2017

My mom just recently got diagnosed with SCLC. After doing MRI, they found 1 small lesion to the brain. The doctor wants her to do 10 sessions of whole brain radiation (she's finished 3 of these already). Then wait a week and then 4 rounds of chemo (3 days in a row each round). I'm super worred about the Whole Brain Radiation and what the side effects are... 

sondrahays's picture
sondrahays
Posts: 23
Joined: Aug 2017

My husband just finished his brain radiation an mostly see fatigue. it is different for everyone. how is your mom? and how old is she?

dcampbell's picture
dcampbell
Posts: 1
Joined: Oct 2017

Hello all, It is great to be here and have this support and knowledge system. My husband was diagnosed with undifferentiated  SCLC, with mets to the brain and liver. Hi is 48 and otherwise very healthy. He was diagnosed on Sept 22nd. They originally thought he had lymphoma since his lymph nodes were swollen so bad. We found out what it was on Sept 21st. Had a upper body CT Scan at 9:30 on the 22nd and was hooked up to first chemo by 12:30 that day. Scary. Oncologist said he was so swollent that he was close to having breathing completely cut off. The following week they started radiation. In 15 days he had 30 chest radiation and 10 brain radiation. The radiation process went surprisingly well, just tired. He has had one more chemo treatment since then and is due to have another on Monday the 13th. 

So getting to my question...he is not sick to his stomach at all, just cannot eat because of a sore esophagus. Having a hard time drinking anytthing. So we go in for fluids most days during the week. Anyone else experience this? What foods help? What if anything helps?

He is using the Magic formula they prescribe to numb it but they said to stop that because it could mask pain and make it worse, so now he is using Carafate and Prilosec just to make sure there is no stomach acid popping up. He also was taking pain meds, but wanted to get off of them for fear of addiction. 

He has had the best most positive attitude but the last two weeks have put a damper on that. He is weak, tired and cannot eat or drink. 

Any and all information you can share is much appreciated!! Thank you all for listening!! I look forward to sharing experiences and info!

jorola's picture
jorola
Posts: 231
Joined: Mar 2016

This happened to my husband. Good news it will heal. Problem is it will take time. How much? It varies - some a couple of weeks but my hubby's was so bad it was almost 3 months. At it's worst he lost 40 lbs in 4 weeks due to not being able to properly eat or drink. He also needed hydration IV treatment. Finding out what worked was truly trial and error and don't be afraid to try weird stuff. Guacamole - worst thing ever, he literally was on the floor in a ball of pain. However a potato shredded and fried in a ton of butter worked like a charm. I think it partly depends on the food enzymes and when they hit the sores whether it will cause pain or not. I get your hubby's wish to stay away from painkillers but they do have a time and place and this is one. Mine got down to having a sip of liquid dilaudid then a sip of ensure just to get something in him. Talk to the drs as there is stronger stuff than the magic mouthwash that may work better. He needs to stay on top of this before he ends up like mine who was days away (and really should have had one already) from a feeding tube. Remember radiation continues to work even after treatment stops - several weeks or more sometimes. All the best to you both.

adinisio
Posts: 3
Joined: Oct 2017

My Mom is 68. She lost 99% of her hair on day 10 of radiation. She has weakness and fatigue. Her head itches like crazy, where it was keeping her up at night. Did that happen to your husband? She tried everything on it - a special aloe lotion, cortinsone, benadryl. Nothing helps the redness and itching. She's hoping it will go away with time. She just recently went through her first session of chemo (3 days in a row) and since then she is still just really fatigued with loss of appetite. She takes a nap every day. I'm worried abou the log term effects of the brain radiation - I've read of dementia, memory loss, confusion, just not being themselves... praying this doesn't happen!! 

SherryZ_06's picture
SherryZ_06
Posts: 1
Joined: Nov 2017

I turned 52 in July and then I was diagnosed with LS SCLC within days, having several tests to include bronchoscope, MRI/CT?PET scans and a port placed.  Then I started concurrent chemoradiation on Aug. 9th.  I had four 3-day cycles of chemo with Cisplatin/Etoposide, along with 30 days of radiation therapy to the right lung.  My tumor was measured at 4cm in the beginning, then re-measured about halfway through at 2 cm.  I go for a followup or restaging CT on Monday, Nov. 27th.  I also have a second brain MRI that day to make sure my brain is still clear. If it is, they will schedule preventative PCI.  I was able to stay positive and somewhat healthy throughout treatments until recently.  My Neutrophils dropped in the second week after each treatment where I needed two, one, two and two shots of Neupogen.  After the last day of the last cycle of chemo, Oct. 13th, I was scheduled for weekly blood work.  The last treatment caused my Hgb to drop close enough to the danger level that the doctor ordered one unit of blood in that second in-between week.  So far, so good, right?  In the last week or so I've started having this burning pain in my ribs where I envision the tumor is/was.  It burns in front and in back of my ribs/lung.  It also feels like muscles cramping (or even my lung cramping).  It's an "inside" tissue feeling, and not a visible burning of the skin. Sometimes I get really bad anxiety from where this pain takes me, because all I can think is that the treatments must have stopped working at some point and the cancer has been just growing and moving for weeks.  But then I realize that I can breathe -- deep.  My movements are not restricted, although I do tire quicker these days.  I have noticed that I'm experiencing some neuropathy, though, which only feeds my anxiety.  I plan most things for the morning bc I'm ready for a lengthy nap in the afternoon.  Along with this burning pain, I've started having a very dry cough that gets worse when I talk -- two of the symptoms that took me in for my original diagnosis.  So again my anxiety gets a boost and I start panicking.  I've been able to calm myself the last few days through just doing little things around the house.  I'm mostly wondering from all of you if there's been any burning at the tumor site after radiation from anyone else?  Whenever I look it up, I get radiation burns on the outside of the skin, but nothing about this pain I'm feeling. I don't have a fever and that is the first symptom when radiation pneumonitis comes up. Now I'm babbling.  Thank you in advance for any insight or information anyone can provide

 

ClaCla
Posts: 137
Joined: Jul 2017

SherryZ, I am having the same experience with the cough.  My husband insisted I go to the doctor because of it, which is how I got diagnosed with Non-Small-Cell Lung Cancer.  But after a lower left lobectomy and six weeks of chemo and radiation, I still have the cough.  Eating causes a burning sensation which I'm assuming is a temporary side effect of the chemo.  I see both the chemo and radiation oncologists later this month, so maybe I'll learn more about the cough.  I don't have the other side effects you mentioned, but thought you might want to hear from someone experiencing the persistent dry cough.

Best success and God bless.

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