Small Cell Diagnosis

[D iane]

Hi.  My husband was just diagnosed last week.  We knew only 1 person with this type of cancer and he lived for 8 months from diagnosis to death.  Needless to say, we are devastated.

It's extensive stage.  Mets on his liver, adrenal glands.  Nodule on his kidney was indeterminate.  Still waiting for MRI of head to be scheduled.  He did have a ct of his head in July for a head injury and nothing of significance was found at that time.  We're praying no brain mets.   PET scan scheduled end of week.  Chemo should begin next week regardless of these test results.  We have radiation consult tomorrow.  No clue how long the set up will take to get the concurrent treatment going.  I believe the 1st line treatment will be carboplatin + etoposide + tecentriq.  

I was recently reading combining the 3 drugs is showing a little promise in longer survival.  I hope he does well.  One can only hope for the best and that he doesn't get too sick from the treatment.

I don't want to be here, not sure if I'll be back----Just looking for any sort of hope and if anyone would be familiar with a clinical trail should he not respond to treatment.  He said he would be open to it, but wants to go conventional route first.  We are located near Philadelphia PA.   

[LUNGevityKristin]

Hi Diane, I'm sorry to hear of your husband's diagnosis.  LUNGevity has a clinical trial finder and can also connect you with a clinical trial navigator if you decide to go that route.  The information for both is HERE.  Lung Cancer 101 might also be helpful for you. We are here to support you!

[LUNGevityKristin]

There also is a small cell webinar coming up soon, here is the link to register: https://docs.google.com/forms/d/e/1FAIpQLScC-JjpjYPv7mQlP847CJFue4igf7zgVnq1PNF1qXyPLJaPYQ/viewform

[Tom Galli]

Diane,

Very sorry to learn of your husband's diagnosis. Extensive stage small cell is a tough row to hoe, no doubt. I think conventional treatment first is a good path. In addition to the clinical trial navigator Kristin cited, you might try contacting the National Cancer Institute Intramural cancer treatment program at Bethesda, MD. They are a short drive South down I-95 from Avondale. Here is more information on the National Cancer Institute program. By the way, I was born and raised in DELCO (Delaware County) and I've actually been to Avondale.

I understand your despondency.  My wife and I experienced a 3-year fight-for-life that started almost 16 years ago. My treatment was not easy, nor was it successful or lasting until we found our magic bullet (Stereotactic Body Radiation Therapy). But we persisted. There are lung tenured small cell survivors, even those diagnosed with extensive stage and I do hope your husband joins those ranks. Hope is a good thing.

Stay the course.

Tom

[D iane]

Thank you both for the info and your kind words.   Hubby is doing pretty good.  We had a radiation consult this morning.  Going back to oncologist Thurs. where he will also get his chemo class and will get a schedule (or whatever they do?) then.   We finally have a firm PET scan date, and have a MRI of brain set as well.  PET scan was rescheduled due to equipment failure.------I just don't get this!!!  Cancer is an epidemic and I realize all these machines are very expensive but geez!  I really don't mind traveling to the next nearest location. I wonder if it's like this in the City?  We are with Penn Medicine. (Abramson Cancer Ctr.) They have expanded out here to the burbs and even Lancaster.  Same thing goes on with radiation.  Closet place to go is the hospital.  (West Chester)  Lots of hurry up and wait, but we're rolling...…………….

Happy to get  baseline scans and 1st line chemo treatment going before Thanksgiving.  It is encouraging to hear a nurse or Dr. say that this cancer usually responds well to the chemo--so I am really hopeful for a good response, and I do pray for some longevity.  I guess I should move onto the SCLC forum and not post any updates here?

  Will read your Scanziety and treatment history.  Wow, 16 yrs is absolutely awesome!!!!!!

I am coming up on 2 yrs since diagnosed w/ stage 2B breast cancer.  I'm doing great but get a little anxious around scan and mammo time.  Also have fears of it one day returning once I'm done with hormone therapy.  Everyday I feel good, is a good day.   Thank you again, Di

[LUNGevityKristin]

Diane,

You are welcome to keep this thread going with updates or move into the SCLC forum.  Wherever you post, we are here for you!

[just me]

My husband also was diagnosed this week with small cell, extensive.  It is very scary. He seems to be declining so fast.  We are wondering if he will survive treatment. There is comfort knowing others have made it through.

 

update April 10th,, 4 rounds carboplatin, etoposide and tecentriq, showed a good amount of shrinkage. The plan was to continue with just the immunotherapy which did not work.

Beginning a  new second line of chemo.  

 

Edited April 10, 2020 by just me
update

[D iane]

On 11/8/2019 at 9:12 PM, just me said:

My husband also was diagnosed this week with small cell, extensive.  It is very scary. He seems to be declining so fast.  We are wondering if he will survive treatment. There is comfort knowing others have made it through.

So sorry just me.   We went to our primary Dr. Friday for flu shots, husband also got the pneumonia vaccine.  I asked, how did we go from pneumonia showing on a scan (August 2019) to SCLC in a little over 8 weeks? Scary indeed!!!!!  Is this how fast it's growing and spreading?

May I ask how old your husband is?  Mine is 60.  I feel horrible for our children (33 and 26) this is way too young for them to lose a parent.  I am being as positive as I can.  I feel there's no use for all doom and gloom right now.  Let's get him in the chemo chair and see how these 3 cycles go.  He will be getting Tecentriq, Carboplatin, and etoposide.  All three on the 1st day and the etoposide for 2 days, then 2 weeks off.  We see the MO (medical oncologist) again on Thurs and hope to get started next Monday.  We also have PET scan and brain MRI scheduled.  I will be crushed if he has brain mets already, but I'll worry about that when the time comes.  His physical condition has also changed. Most noticeably is weight loss, constipation, and he is having pain.

My very best wishes to you.

[Tom Galli]

Just Me & Diane,

Just Me: Let us know details on your husband's treatment plan if you feel comfortable revealing it. Lung cancer is indeed a scary disease but I'm alive after a multitude of surgeries, chemotherapy and radiation so if I can live, so can your husband.

Diane: Try and find a way to introduce calories into your husband. Weight loss and chemotherapy don't mix.  Chemo destroys chemo cells and some good cells and his body will need calories to replace the lost cells. My wife introduced me to ice cream three times a day into my diet when my appetite disappeared during chemo. Be sure to report the constipation and pain to his oncologist during your forthcoming consultation.

Stay the course.

Tom

[D iane]

Thanks Tom.  Easier said then done.  I'm basically flying by the seat of my pants here.  I've got the knowledge in my head but to ask and try to help him is something else.  I went and got him a laxative last night.  Not sure if it helped yet.  He describes the pain as nausea and wanting to vomit.  I'm sure he will let the Doc know on Thurs. how he's feeling. If not, I certainly will.

He is also obsessing over his diet with the upcoming PET on Friday.  I will give him plenty of protein and veggies.  They ask you to restrict  sugar a few days preceding the test. (As you already know)  Afterwards,  I will do my best to get the big gun calories into him before treatment starts.  

[D iane]

OK.  Going tomorrow for the PET scan.  Chemo is set for Monday morning.  He also has his brain MRI Monday afternoon.  I am hopeful we will make that appt. in time and hubby should feel alright, maybe just tired which will be a good thing----he can take a nap during the test.   In the hospital they gave him Ativan before his abdominal MRI.  He'll do fine.

I'm scared to death I'm going to do something wrong with meds and remedies to get him through chemo as side effect free as possible.  My daughter and I have decided to start a journal and have him participate. He is the patient after all !!  LOL   This way,  if he doesn't verbally communicate to either one of us what's going on, perhaps he can write it down and we can take it from there.

I'm sure I'll be back.

[Curt]

@D iane the journal is a great idea!  Sounds like you are being a great support for your husband.  Please be sure that you are also caring for yourself during this time.  It’s very easy to forget that.  Cancer treatment is a marathon and you’ll need to be healthy to be able to continue to be a support to him.  It is very easy to get swept up in the patient/caregiver roles right now.  Make some time to put that aside and be husband/wife.  Both will be important to help you both through this.  I hope he gets good PET scan results today.  

[D iane]

Hi Curt.  Unfortunately I am all to familiar with caregiving and how it can suck the life out of you.  My health is already slightly compromised.  I'm a breast cancer survivor (BTW I hate that term: Not a survivor until I perish of another cause!) I've developed a rash on my radiated side and I know it is due to the stress. I am still on 6 month intervals and have imaging and an appointment next month.   I cared for both my mother and mother in law a year or so apart, and it was just after this that I was diagnosed.  

We'll be taking this weekend to chill and just be together as a family.  And EAT!!!!  He's losing weight and he is in pain.  After the PET this morning the barium made him go so I told him it's OK to take a pain pill.  I'm not sure if he will  venture out this afternoon. I came to work after.  We won't see results for a few days.  I told him this will be the worst one, cause after treatment the next scan will look much better!!!   Staying positive and in the now.  I'll let you all know how he makes out next week.  I was lucky and  did not need chemotherapy for the type cancer I had.  Just surgery, radiation, and currently on hormone therapy for at least 4 more years.  So, this part is all new to me.  I really hope he responds and actually starts to feel a little bit better.  The steroids should make him hungry!  

Have a wonderful weekend.

[Golfman]

Sorry to hear about your husband's diagnosis. I've learned that every patient is different, every cancer case is pretty much unique and that sclc is a mean disease. But there's great news in the treatment world now! We have more hope now than ever before. Amazing people are developing amazing treatments! I vividly recall the Dr giving me my diagnosis. Very scary indeed. In fact, I mentally toned out her words after she said "survival is typically 2-4 months, maybe a year". Is she reading about a different patient? It can't be me!  This was in mid Feb of this year. She immediately put me on the same chemo+ Tecentriq regime as your husband. I had an allergic reaction to Etoposide twice, to add to the drama, so she substituted another ugly drug. My sclc also included a brain MET. Yet another scary fact for my family and I. Chemo was not pleasant, but was tolerable. I had "bone pain" but pain pills helped. In short, chemo was not as bad as I thought, and multiple daily naps helped. My Tecentriq treatments have continued every three weeks since my diagnosis. And I now have CT and brain scans on a regular basis. Although nobody mentions "cure" they do talk about "stability" and that's now one of my favorite words. Today my sclc is stable, and my next regular CT/scan is a month away. I'm sure other patients have similar results. In short, outcomes from sclc were historically very poor. But not in 2019!  Immunotherapy (and other new treatments) have completely changed that scenario!  One scientist, in fact, won the Nobel Prize in late 2018 for immunotherapy work! There are also tons of other new treatments involving genes, etc. too many for me to understand. Your medical team will explore all of these. My message is that had I been diagnosed in 2018, I would have had  a much different treatment and outcome. Treatment results today are much more successful than yesterday, and treatments tomorrow will be even more successful than today! Stay positive because there's a ton of good news out there!

 

[D iane]

Thanks Golfman.  Encouraging words.  I do hope your next scans show STABLE disease!   He started chemo yesterday ( it was a long day) and he wanted to go by himself today and tomorrow since it is a shorter (1 IV) treatment.  I am nearby working if he needs me.  I understand the effects are cumulative so on guard for whatever happens.  They also stress to keep your normal routine as much as possible.  He did spit a little blood this morning so I tried to be positive by saying the meds are already killing the cancer, that's why it's bleeding!  

 

[Golfman]

Glad to see that treatment is underway. I recall my feelings during my first chemo round: scared (since I had no idea what to expect), worried (even the word cancer make me so), curious (what the heck is going to happen to me). What really happened is that I had some pain and became very tired. Pills solved lots of the pain issue, and the couch became my best friend. I've heard some have GI issues, headaches, etc. but not all do. Like your husband, I'm lucky to have my wife to help me through the process. I think keeping active is a very good idea. I remember the Dr telling me to wear a mask since chemo messes up the immune system. I'm not a good patient and did not wear it on one occasion-a very bad/dumb idea. Caught a terrible cold/flu thing. So my advice is to follow the orders exactly. Lots of water, mask, stay away from sick folks, etc. Keep up the positive thinking!

[D iane]

Well he did pretty good with 1st cycle of chemo. He got sick the 2nd day. 2x's.   He did better yesterday, now he's done for 2 weeks.   This morning  he is complaining of heartburn. He is burping a lot.  We see the Dr. later today. 

The PET results are back and of course there's more metastases showing up.  Lung uptake value was 11.3. Almost every single lymph node in his chest and abdomen (SUV 8.1) Adrenal glands 8.3, kidney 8.1.  There is skeletal involvement. C-1, L5, left side 4th rib, and a shoulder bone I don't know how to spell. Shall I go on?  Good God.  Little discouraged yet still hopeful we can knock it back some for awhile.  Anyone else with this much disease and made it through treatment with responsive results? 

I hope the Dr. breaks it to him gently.  We are looking forward to some time off after today!!!

 

[LUNGevityKristin]

I'm sorry to hear that there are metastases.  If you or your husband would like to speak with someone one on one who is going through similar treatment, LUNGevity has a peer-to-peer mentoring program.  https://lungevity.org/for-patients-caregivers/support-services/peer-to-peer-mentoring  There is also the HELPLine https://lungevity.org/for-patients-caregivers/support-services/lung-cancer-helpline staffed by oncologist social workers that can offer support.  Both of these are free services.  If you have any questions, please let me know.

[Curt]

I’m sorry to hear about the metastasis @D iane Having the disease in that many locations does complicate treatment.  Have they done a biopsy yet?   Finding out if he has any genetic markers can be a game changer with advanced lung cancer.  There are some really encouraging treatments and results out there.  

[D iane]

14 hours ago, Curt said:

I’m sorry to hear about the metastasis @D iane Having the disease in that many locations does complicate treatment.  Have they done a biopsy yet?   Finding out if he has any genetic markers can be a game changer with advanced lung cancer.  There are some really encouraging treatments and results out there.  

There has been no mention of genetic markers.  I asked the pulm. about receptors and if that's how they treat this cancer on Day 1 since I saw nothing of the sort on the pathology report from biopsy.  They just threw the stain on the samples and said Yep, small cell.    He asked what I did, like did I have a medical back round.  As with anyone diagnosed with any type of cancer, you want to know all there is to know about it.  You're always looking for an answer as to why your body's cells start going stupid!  You're always looking for a way to out smart it from coming back or controlling metastatic disease.

At this time, I am just grateful they are treating him and still holding out hope that this treatment will work for a period of time.  I won't hit the floor until: 1-He either gets too sick from these treatments, or 2- He makes it thru but the scans show bad results.

The Neulasta shot has kicked his butt.  He's very achy and sleepy.  He is taking Claritin, advil, Tylenol.  I've been keeping bottled water around.  It seems he will drink it since it's right in front of him whether in the living room or bedroom.  I even put one in his van should he venture out.  My daughter took a sick day today and is at home with him.   What a great help!  I trust she will get some nourishment into him today.

We thought we would have a quiet week next week, but after Dr. visit yesterday , he was instructed to have labs done on Wed. and he is going to have a port put in.  Consult with surgeon is on Tues.  We are on schedule to have that done before next cycle.  

20 hours ago, LUNGevityKristin said:

I'm sorry to hear that there are metastases.  If you or your husband would like to speak with someone one on one who is going through similar treatment, LUNGevity has a peer-to-peer mentoring program.  https://lungevity.org/for-patients-caregivers/support-services/peer-to-peer-mentoring  There is also the HELPLine https://lungevity.org/for-patients-caregivers/support-services/lung-cancer-helpline staffed by oncologist social workers that can offer support.  Both of these are free services.  If you have any questions, please let me know.

Thank you.  🙂

[D iane]

Morning.  Just dropping by to wish everyone a Happy Thanksgiving!!

The Neulasta effect only lasted into the next day, by the 2nd night it was a bit better.  We continued the Claritin thru Sunday night.  He is doing well, he is eating!!!!!  He's not complaining about his bowels so much now, and although he still deals with the heartburn, I have Pepcid and I also asked the NP if he can have baking soda and she said yes.  That provides instant relief, however, he hasn't tried it yet.

We are seeing a surgeon this afternoon to set up port placement.  Labs tomorrow and that's it until next week.  Thanks for letting me jot all this down.  I am worried about the cumulative effects of treatment, but I am encouraged he did really,  really well with #1. Hope it continues and labs look good!!

 

Enjoy

[Tom Galli]

Diane,

And Happy Thanksgiving to you.

It is indeed one of my favorite holidays of the year, contemplating turkey, ham, dressing and all the fixings. I do hope your husband can participate in the feast.

Stay the course.

Tom

[LUNGevityKristin]

Happy Thanksgiving, Diane! Enjoy the little break from doctor visits!

[D iane]

Good morning.  We had a wonderful Thanksgiving and holiday weekend with friends and family.  

Husband is doing pretty well.  He is eating good and he/we have figured out his abdominal pain is more from constipation than disease.  Once we took care of that he is feeling much better.  He has gained a couple of pounds back!  The heartburn has also resolved.

Yesterday he had a port placed which went well. He also had an oncology appt. His labs are better than last week so 2nd cycle is scheduled to begin Monday.

Some more good news.  No evidence of metastatic disease was found via brain MRI he had on Tuesday!!  👍

Here's hoping all goes well with this round.  There's still going to be some trial and error involved, I just hope since we both understand a little more, it will help us stay ahead of any side effects.

[LUNGevityKristin]

Great update, D iane!  So glad his stomach and heartburn are doing better.