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Just Diagnosed Extensive Small Cell Carcinoma

LaurenCat18
Posts: 1
Joined: Mar 2019

Hi,

My father was diagnosed about 2 weeks ago (Early February 2019) with SCLC: Extensive. He's 70 years old but in otherwise perfect health, honestly, my father looks like he's in his 50s and the only medication he's on is for his blood pressure. He started having a recurring symptom, painless swelling in his left leg in June of 2018. The swelling didn't hurt so he ignored it. My sister finally convinced him to see a doctor in October 2018 and they sent him to a cardiologist because they thought it might be a blood clot. When they found no clot, they sent him home with just a compression sock and a head scratch. My dad finally saw his primary in Febuary 2019, who sent him for a CT scan as soon as he saw the extent of the swelling and the CT scan resulted in a biopsy of his groin. Cut to two weeks later, he was given his diagnosis. We've seen the oncologist for the first time this past Friday and she essentially gave us the prognosis of 6-12 months which I see as the standard prognosis given to all individuals with this diagnosis. My dad is set to start chemo next week, again the standard, 3 day treatment, with two weeks off, then starting all over agian. 

I guess my questions are for those who have gone through this type of treament or friends/family of those who have. How harsh is it on the body? I'm hoping the chemo causes the cancer to go into remission, and I'm fully aware thatit's very likely the cancer will come back since it's so fast growing and aggressive. It also makes me scared because my dad has (supposedly) been in the extensive stage for 8 months now without treatment. Ever since his diagnosis he's been in considerable more pain and noticing new pains in areas (we're not sure how much is directly related to the cancer versus psychosomatic). He's even developed lymphedema. My dad is pretty depressed, I don't think he's yet processed this death sentence.

I'm just looking for answers or similar situations or unrealistically hope someone has something to say that resonates.

Thank you

jorola's picture
jorola
Posts: 237
Joined: Mar 2016

It is so hard to say how he will react. It depends on so many things. Even people with similar age, health and other factors can react very differently. The best thing to do it prepare for the worse and hope the best happens. I am going to assume you are from the US. Here in Canada all he medications needed to combat symptoms are given for free. There are many out there that really ease the sypmtoms these day. Your Dad and you should speak to his dr and treatment team about what medications can be offered to help him. Other things that can help is to drink LOTS and I mean LOTS of water during and right after treatment. Layer up with clothes and/or take a blanket. People often get cold from the treatment. Have him take something to distract him from the treatment - books, games to play with whoever took him to treatment, if he uses a cell phone well shows on his cell. Snacks for nausea- crackers etc.

After he gets home he will need to rest. Make him a little nest - a place where he can lay down but have things he would want handy - blankets, pillows, books, remotes etc.

Symptoms may worsen as treatment continues. I recommend you journal his symptoms and use it to keep his treatment team informed. That journal will help the team track his sy,ptoms as they develop and progress and better help them determine what medications would be the most effective to help him or be able to give you suggestions on how to help him.

Keeping his appetite up is very important. My husband was recommended a high protein but duble check what is recommended for you dad. As treatment continues most likely he wil want to eat less and less so get him to eat as much as he can handle now. This will help with any weight loss down the road. Check with his dr about any supplements and diet changes before you do any. It is possible introductions of supplements and/or diet changes could interfer with what his chemo treatments are trying to do. Example broccoli is an antioxitant. Eating lots of this (as told by my husband's oncologist) will fight to get rid of the chemo in the body which is introduced to kill th cancer cells). However each dr approaches this differently so be sure to check with them.

My husband had NCLC but I have lost my grandfather, aunt and uncle to SCLC. This was before the new advances in treatment for SCLC. New research has come up with new treatments I wish were around to save my family. May these advances help your Dad.

VancouverBC
Posts: 5
Joined: Mar 2019

There is always hope since there are extensive stage SCLC survivors who go into remission and cancer never returns back.

Here is an example of extensive stage small cell lung cancer survivor https://csn.cancer.org/node/319066.

Deedee333
Posts: 1
Joined: May 2019

Lauren, so Sorry to hear about father. How did everything turn out? I am new to this post because myaunt was recently diagnosed with extensive stage 4 SCLC. It all happened so quickly. She was having stomach pains and diarrhea. She told her primary about it and thought it may be due to an increase in dose of a medication. I wish her primary looked more into it or told her it was serious. He told her to go to ER if I didn’t get better. She waited a week and my mom forced her to go to the ER because she didn’t seem right. Her liver enzymes were elevated and they did all the tests and scans. They found a large tumor on her lung and did a biopsy of the lung. The biopsy took almost a week to come Back. We were anxious and stressed and overwhemlemed. Being in the health care field I figured it was SCLC. She had an X-ray and maybe a scan about 6 months prior and her lungs were clear. So this is very aggressive and fast growing. We started her first round of chemo. One doctor was upset with us for waning to try treatment saying the cancer “was everywhere“ but we had no reports from the scans just yet.  But she wanted to fight as well as her family. The first round of chemo knocked her out, she was very tired and out of it. Couldn’t eat, talk or move. Very hard site to see. But she tolerated it well no N/V. Once she completed the chemo each day she got better and better. We asked for physical therapy and she is currently in rehab to build up her strength. We do know that her liver is heavily affected by the cancer, as well as adrenal gland. MRI of brain was clear and bones were clear thankfully. We are giving her lots of fruits/veggies rich in antioxidants. Trying to get her caloric intack up. We bought glucerna drinks to increase calories. She is walking and doing really well now. Just lost a lot of weight. She is due for a port placement in a week followed by her second round of chemo. She will also Be placed  on immunotherapy. I am just hoping for the best for her. She has been very depressed about it. But there are days when she is so cute and thankful for all of our help. i just pray everyday that she can fight this and go agaisnt the odds. We have a wonderful oncologist, and I truly believe if you are proactive, or have family who advocates for you then they work harder for you and give you better care. Does anyone have any cases of hope for stage 4 extensive SCLC?

ljkenney
Posts: 1
Joined: May 2019

Much like Jorola said it varies patient to patient.  I went through 4 day chemo, 8 weeks of treatment, 2 weeks rest twice now and both times I was lucky and had no real symptoms other than exhaustion and what they refer to as "chemo brain".  However I was 50 when I was diagnosed.  Amazingly after two years of this disease I am free and clear of SCLC cancer.  Now dealing with skin cancer though.

Deedee, If the brain scan was clear then there is alot of hope because that is normally the first place the darn gone SCLC cells will spread.  

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