newly diagnosed - getting chemo - scarred

pdcameron
0 Recommendations

I don't even know where to start. One week ago today my dad felt really tired and generally not good. A trip to the ER showed pneumonia and a cat scan then showed masses on the right lung and liver. SCLC was confirmed 2 days ago.

As I sit here with my dad today his chemo has begun. I have a general idea of what to expect but am hoping some of you will share your experience with me and maybe help me help my dad.

I hate the fact that I am here but I am thankful there is a resource like this site. thanks for listening...

20 replies

gdhogan

sclc is different from nsclc, which is what I have. But for the chemo...expect some tiredness/nausea. There are a variety of anti-nausea drugs that work wonders. My taste in foods changed greatly and things that tasted alright one day just weren't working the next day. How often is he getting treatment and what is he getting? Everyone reacts to this stuff slightly differently so what I say may differ from what someone with sclc might tell you. Just know that he will need to slow down and take this one day at a time. Will he be having radiation treatment as well?
You will make wonderful friends here and find a wealth of info.
Thoughts and prayer for your Dad.

pattyp1

welcome, dear,
I am sad you need to be here, but glad we can be here for you.

My daddy also had extensive stage SCLC (that means it has spread to places/organs other than the original tumor). We were blessed to have the most wonderful medical team in the whole world.

There are several things you need to know
1. SCLC is not curable, but it is treatable. In short, you can manage it, but it once it goes extensive, you need to treat it and keep it under control.

2. SCLC is believed to come from a genetic source - chemo is designed to wrap around the end of the DNA and keep it from unravelling. That basically says your daddy was probably pre-disposed to it.

3. With SCLC, there are a few things you really need to keep after - sodium level in the blood (tends to go really low and causes all kinds of bad things - if you ever need to go to the ER - ask them to check for hyponatremia - it could make a big difference to dad) - and seizures. If your daddy ever gets a seizure (even one), find a neurologist and make him your best friend.

4. The four different kinds of chemo my dad had made him feel tired more than anything else. Go to www.chemocare.com and look up the chemos your dad is on - get real familiar with side effects of both drugs - if/when he gets a weird side effect - get a hold of your onc nurse and ask "is this normal?". You will then get all the info you need.

5. One of the worst side effects of some chemos is the digestive upsets. They have real good drugs for nausea (make sure you have some on hand). The one that will get you in trouble faster than anything is diarrhea. DO NOT MESS AROUND WITH DIARRHEA. It will land his sweet self in the hospital because it screws around with fluid and chemicals in the body. Make sure you are prepared with information.

6. Make sure all the legal stuff is taken care of - wills, powers of attorney (financial and health care), living wills, etc. It is unpleasant, but it takes only a few hours, and then you don't have to mess with it anymore. This is one of those "just do it" things.

7. Let's talk about statistics. You and I have 100% chance of dying. So does your dad. If you do research on SCLC, you will see statistics that will scare the poop out of you. However, the chances of surviving 3+ years are still greater than zero. You need to focus your energy on figuring out what it takes to keep him in the survivor category. There are many survivors on this web site. There are people that will advise otherwise, but do you really need more stress in your life right now???

8. Be gentle to yourself and your daddy. These times can be very stressful. Being there for him is a blessing and it is enough.

9. Being scared is normal. So is being tired, cold, shaky, ecstatic, forgetful, etc. You are now in the "new normal". You need to also focus some of your energy on taking care of yourself. This would not be a great time to get run down and catch something...

Sending hugs and prayers for you and your dad.
Pat

jadams

I just joined this site and I have SCLC. My chemo was cysplatin and etoposide every 3 weeks for 6 weeks. I breezed thru the first 2, felt a little tired with the 3rd, and down for the count with the 4th. My Onc reduced the drugs first by 15% then by a total of 33% and that seemed to do the trick. The last 2 treatments I went on about my business as usual.
It's so very true what they say, everyone is different. Myself I had no problem with the taste of food, just being too tired to eat it. I never had diarehha, quite the opposite.
But do make sure you keep track of his blood count, very important. He will probably need shots for white cell as well as anemia.
Best of luck, praying for your family.

dbfc

My beautiful wife was diagnosed with ED-SCLC in September 2006. She had first-line chemo with etoposide & carboplatin for 3 consecutive days each 3 weeks. Side-effects weren't so bad at first, but tiredness and lethargy gradually got worse as the haemoglobin got slowly lower. She also had cranial radiotherapy, which probably contributed to the tiredness.

Your Dad will probably get dexamethasone each day before chemo, as well as another anti-nausea drug like tropisetron/granisetron/dolasetron. This last one can cause constipation, so it is worth taking a stool softener if that has been a problem beforehand. The dexamethasone is a potent steroid, and has the effect of "pepping" up, but once it wears off, tiredness sets in. It can also affect hearing and eyesight (shininess with bright lights). It can also unsettle diabetic control.

The usual things apply:
- plenty of oral fluids
- smaller frequent meals (dex can make you quite hungry initially)
- meticulous mouth care with a salt/bicarb mouthwash
- avoid sunburn situations
- avoid situations where skin damage can allow infection to take hold, like gardening, toolsheds

You have probably been told all this already, and it as jadams says: everyone has a different response YMMV as you say in the US of A.

Your Dad will likely be offered PCI (prophylactic cranial irradiation) after chemo to reduce the risk of brain metastases.

Don't give up hope. My wife is still reasonably well after 20 months, and having a second dose of chemo at the moment (5th of 6). She hasn't given away her Christmas dress just yet!

David

eilee

HI,
I am in a similar situation. My Dad was diagnosed the same way in February. He did well with Carbo/ Taxol - he was tired but still walked a mile daily. He's had a complicated course. He is at MGH this weekend with pneumonia.
Get ready for lots of ups and downs and try to stay positive. No time for negativity. Every day that my Dad is still with us and not suffering - is a good day.
Best wishes as you begin this journey.
I have found great comfort in our medical team. Hope you have complete confidence in your Dad's docs.
Eileen

pdcameron

Thank You ALL for such kind words, support and information. My dad completed day 2 of 3 chemo treatments today. He has been very brave so far but tonight it really started to sink in to him just how serious this situation is. I have stayed ONLY positive with him however he is having a hard time with understanding that he is being "treated" and not "cured". He mumbled in his sleep today "why is this happening to me?" and "am I going to be OK?" It broke my heart to see him wrestle with that.

If all goes well he may get to come home wednesday and begin his outpatient treatment. He is receiving Carboplatin and Etoposide. So far no nausea or vomiting. Fatigue I can't really tell yet because he has been so run down prior to his hospitalization. He is being treated at Baylor Hospital here in Dallas and I am thankful for the kind doctors and support staff there.

Again, I can't thank you all enough...

simplyklb

Patty P,
SCLC is NOT genetic. Cigarette smoking changes the DNA of people who smoke not the offspring. The only reason people who are non-smokers get lung cancer is due to exposure to second hand smoking. Everything I have read is that smoking causes 90% of SCLC. Please don't mislead people.

Thanks,
Kristi

MaryRVF

Hello!
Just wanted to let you know that I will be thinking of and praying for you and your dad. My 74 year old mother was diagnosed with Limited SCLC last Oct.(07). She underwent 4 cycles of 3-day chemo and had radiation as well. She then had 10 days of PCI radiation to brain to hopefully prevent mets. So far all of her scans have come back clear; although we are dealing with some dementia type symptoms for about 2 months now. We are not sure if this is a result of the PCI, major depression or a combo of all she has been thru. Take care of yourself as weel as your dad!

Mary

pattyp1

hey, Kristi,
I am so sorry my words offended you - this was clearly not my intent. I am not being defensive, but would like to use more words to better explain what I was trying to say.

You and I are in agreement on a significant point - most of the people that have SCLC have been exposed to cigarette smoke. However, statistics bear out that not everyone exposed to cigarettes get SCLC, and not everyone with SCLC is exposed to cigarettes.

Getting your skin burned by a lit cigarette had a pretty obvious cause/effect relationship. The big question here is how does cigarette smoke (or lack of cigarette smoke) cause cancer? Some experts in the field have the working theory that the patient has a weak gene in the DNA strand that can be damaged and changed (a predisposition), generally by the cigarette smoke, but maybe by other things as well. This is borne out by the chemo experts that use agents that "hug" the DNA to keep it from unravelling (kind of like putting a pair of support hose around the DNA) - the DNA unravelling being a necessary ingredient for the cancer formation.

There are researchers out there trying to see if this gene exists and identify it. If you believe that such a gene exists (and I do) - then offspring would have at least a 25% chance of inheriting this gene.

Also - there are many other reasons why people get lung cancer - exposure to asbestos, mica, fiberglass, coal dust, etc.

Could I have used different words? Sure. Clearly, I should have used more words. For that I apologize.

Sending hugs,
Pat

pattyp1

hello, again, pdcameron,
My dad took the same chemo (etoposide and carboplatin) - he was generally tired on the third day of the chemo, but only had nausea once (they had good drugs for that). He didn't eat too much on the third day either. On the third course of the chemo, his hair started disappearing. We took it as an outward sign that things stopped growing in him - and celebrated it. Things with cinnamon and lemon in them always tasted real good to him.

I hope dad (and his wonderful son) is feeling better. Hang in there!!

Sending big fluffy hugs,
Pat

RiaRia

hi there - sorry for the situation that you are in. My dad also was diagnosed in march 08 with ext. sclc. you can read my journal to see how and whats been going on with our course of treatment. all i can tell you is to stay positive - always (esp. around dad). you can cry everywhere else. i have a hard time accepting that my dad will never be the same. but. . . i pray every day that he will at least have a good quality of life (regardless of the time left). It is very very sad to see what this disease can do to you. This is an emotional roller coaster and my dad too experiences highs & lows (the why me, don't care about tomorrow etc. ) and we (his family etc.) continue with the positivity (and its not easy). I wish you much success and strength to get through what lies ahead.
maria

Cathyraff

Your father's story sounds so much like my father's. He went into the hospital with a severe cold, had x-rays and was diagnosed with pneumonia. They kept him in the hospital for 5 days then sent him home. He ended up back in the hospital 3 days later, had his lung drained for two days. They finally did a cat scan and found a single tumor in his left lung. We were hopeful they had caught it early, but unfortunately, it had spread to his liver and spine. He just started his second round of chemo and we're hoping it works, although he is in extensive stage. I never thought I would be here either but here I am...Stay positive. My uncle beat lung cancer back in 1989 and lived 11 more years. There is ALWAYS hope.

pattyp1

hey there, pdcameron -
how are things going?
Pat

pdcameron

hey there everyone, thanks for your continued support. Dad has moved in with us and I am currently trying to help him acclimate to his new home. His 1st round of chemo seemed like it has gone ok but the next doctor visit isn't until the 12th.

The most difficult thing to me right now is the depression my dad is going through. He has been referred to a psychologist and we are going there tomorrow morning. His emotions are up and down - I can't even think how my own emotional state would be after receiving such bad news.

His energy has been really low but yesterday and today he has stayed up all day and late into the night. The other problem we are having is although his energy is low, he isn't sleeping through the night.

Does anyone know - when will his hair fall out? Will his energy return? Has anyone else had psychiatric assistance with this situation - and if so did it help?

I hope I can contribute to others as my situation changes as much as you all have contributed to me. Thanks again for your concern and Thanks for listening...

Jolene

Sending prayers out to your dad for a great response to his treatment and prayers are said for you and your family as you face the unknown together.

My dad had NSCLC and I know the horrible feelings that accompany hearing the words," lung cancer." I recall being in TN and I screamed NO! Being a nurse for so many years, I immediately knew he was in for a fight.

Just remember one thing. Every person is different and each respond in their own unique. What works for one may or may not work for the next person. Have a top notch team working for him and they will keep working until there is no work left to do. We have survivors here who have been fighting this chronic disease for 8 -10 years; so try to ignore the statistics.

Faith, Prayer, and Attitude play a huge role for not only your dad, but the entire family. Tell him we are now officially his "cheering squad!" Jolene

pattyp1

hey, pdcameron
(BTW - is that what you would like us to call you?)

my daddy lost almost all his hair during week 3 of carbo and etoposide. even eyebrows and hair on his arms. one of the weird little surprises is that when the hair in his nose dropped out, he had problems with a runny nose - get some kleenex ready.

by week 3 of chemo, my dad's energy started coming back - except for day 3 of each chemo week. he resumed taking walks, working in the yard, etc. it will help your dad if his nutrition level is high and you water him regularly. (trust me, my dad did not enjoy this part). this is also the time where you need to make sure your dad swishes out his mouth with the baking soda and salt after he eats (that helps head off mouth sores, common about this time). Isn't that funny - when he started feeling better, the side effects were getting pesky?

I'm hoping your daddy starts feeling perkier. I'm with Jolene - Go Daddy!!! and Go Kiddo!!!

Hugs
Pat

TinaB

My dad is on his 3rd round of chemo therapy. We did not know what to expect but he has done so well. He gets tired the first few days and can't eat to well...but he does eat. Kinda nauseated but no vomiting. Then each day he starts to feel better and is out and about and doing really well. The hardest part for my dad is not being strong enough to do the things he once did. He is a farmer and works outside etc..and that just isn't as possible for him right now. So, he enjoys watching us do it and helping him out!

Boomer1

Get that psycologist on the line soon! I was dealing with depression prior to my cancer diagnosis so I was already tuned in for help. Some chemotherapy reduces seretonin levels. Besides having the cope with the cancer, the treatment itself messes with a naturally occuring chemical that helps your mental wellness.

Lack of sleep is no help and depression interupts normal sleeping patterns. It's a downward spiral that your dad should address. It wouldn't hurt to get a little help for yourself. Caregivers often forget their own needs. Hope this helps.

Phil

janofc

Wow so many daddy's affected. I don't have any information for you because my Dad wasn't given chemo from first go round with lung cancer, and now 3 years later he has stage IV in the other lung. Now he wasn't even given the option of chemo, or he has refused no one is clear with me on that point. I do know that my Dad hasn't let this keep him down because he depends on prayer to keep him positive, and so far it is doing a really good job. My thoughts and prayers are with you and your family.

Cathyraff

My father is just finishing his second round of chemo. He has it 3 days a week, every third week. He just now started to lose his hair, not all of it, but most of it. What little is left I expect will fall out next week after this round of chemo kicks in. He does good while he is having the chemo, it's about a week after that it hits him and he is too tired to do much of anything. I'm still pretty new in this too, don't really know how he will do after this round. My father's spirits are still very good, thank God. I will keep you Dad in my prayers.

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