Hello everyone! My name is Maria and I am fairly new to the forum. this link is for my introduction thread last week (http://lungevity.org/l_community/viewto ... =3&t=46524). My father is 63 yrs. old and has Stage IV NSCLC Adenocarcinoma. He is in great spirits as we get ready for his first chemo infusion on 21 FEB. We got our chemo schedule on Valentine's Day (yeah, of all days) and it was sobering to hear words like "terminal". My brother and I went with our dad to this appointment and even though we are used to many things being in the military, nothing prepared us for the helpless feeling that comes with finally facing that your dad, who also happens to be your hero, is dealing with a life or death situation. But it was Valentine's day, and my brother and I agree it was only fitting to be with the one person we both fell in love with for the first time in our lives.

So now we are getting ready for chemo, and as the primary caregiver I am a bit scared because I don't know what to really expect. The doctor was very honest about side effects, but I think I will feel better hearing from others in this forum that have gone through chemo. I have tons of questions from the big things to the little things: should he wear comfortable clothes, is he going to be hot/cold during the treatment, will he be allowed to snack on anything?, should he be ingesting fluids during the chemo? things like that. So any input you can provide would be GREATLY appreciated. Thank you and be blessed!

Maria - do you know what drugs your Dad is getting for chemo? While everyone is different of course, there are lots of people here who have had many different types and know quite a lot about side effects and things that help make the treatment easier.

As for your general questions - yes, definitely wear comfortable clothing. All cancer centers are different, but I believe most offer snacks and drinks for those who want them, and of course you can also bring your own. One of the nicest thing about them is also the warm blankets! It is very important to stay hydrated, so it would be good for your Dad to drink as much water as he is able. I know for me, just having some company during chemo was really helpful - even if only for 30 minutes or so.

All the best,
Diane

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3/98 Dx squamous cell NSCLC 2a at 50 yrs
4/98 Left lung removed, no chemo/rad
8/08 Persistent cough and shortness of breath, first appt. with pulmonary doc 11/4/08
11/08 X-ray and CT show tumor in right lung. PET scan confirms tumor, shows no apparent spread
12/08 CT/needle biopsy shows squamous cell NSCLC IIIB, doctors don't seem to agree if its a new cancer or recurrence - but onc believes it is a new one
12/08 Start concurrent radiation/chemo, Cisplatin/Etoposide
1/09 Chemo switched to Carbo/Taxol due to intolerance of Cisplatin
2/09 Radiation completed
3/09 Chemo completed
5/09 CT shows spot where tumor was likely/hopefully scar tissue
6/09 Begin Lucanix trial
9/09 CT scan - stable
12/07/09 CT scan - stable
3/1/10 CT scan - stable
6/1/10 CT scan - stable - begin 2nd year of trial
8/23/10 CT scan - stable
10/25/10 CT scan - stable
1/20/11 CT scan - stable
4/25/11 CT scan - stable - completed drug portion of trial, now follow-up with 3-mo scans
8/1/11 CT scan - stable
10/24/11 CT scan - stable. At my request, switching to 6 mo scans.
4/24/12 CT scan - stable.
10/30/12 CT scan - stable.
2/26/13 CT scan - stable

Avatar is with 10-mo-old grandson Ethan at Xmas

great advice and info!! also my note is , We are all terminal so.. Do not read too much into that!! We are all going to die someday even the person who told you that!! When they give you the this is how long you have speech don't read too much into it! Most folks here have survived that and surpassed that number!!

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April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!

Hi Maria,
Welcome to LCSC,its a pleasure to meet you.I am sorry to hear of your Dads dx,I k now just how much you and your families world has been turned upside down in hearing this news,it isnt easy,but I do promise you,for your Dad and everyone else involved, its hard at the beginning of this cancer journey,but it does get easier simply just with the passage of time.
It did take me some time to come to terms with my dx,I did a lot of research at the outset,mainly to become aquainted with lung cancer its treatments and prognosis,some of it didnt make for very good reading,but I persevered,looking for some silver linings to my cancer cloud.Then one day,I pick up a newspaper,in it an article about a Guy starting up a lung cancer support group in a local hospital near to where I live.This guy was dxd with SCLC in 1993,given only two months to live by his doctors,Robert is hospitalised for his chemo,his family are called to his bedside on more than one occassion,as his medical team dont think he will see the next day,Robert has other plans,he amazes his doctors by making a full recovery,in 2007,he is now dxd with NSCLC,again makes a full recovery after treatment.Today he is 73 years young,now my best friend,living a full and happy,healthy life.I have decided despite having been given only two years max by my GP,three and a bit years ago,to follow Roberts example.
Gosh what was your concern?,I have plumb forgot in all my enthusiasm in replying to you.
Ah I remember, Dianne's reply was just perfect,for me all my treatments,chemo and surgery was really a breeze,for all my concerns,nothing became a reality,my hair didnt fall out during chemo,not even the gray ones(drat)I wasnt sick,I wasnt a breathless invalid after my upper right lobectomy.Today I am a 5 day a week keep fit nut,swimming,gyming and yoga-ing.Realy enjoying the life I had prior to my dx.
OK,I know,every single lung cancer patient is different,but I just want you to know that there can be light at the end of this tunnel,so keep up a positive outlook,I so wish your Dad to be another Robert Lowe.Bye for now.

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Regards,
Eric Byrne

To read my story, please follow the link : http://lungevity.org/l_community/viewtopic.php?t=43268

Maria, Just be sure to ask when you get to the infusion center if they can give you a quick "intro" to the space. I never got one of those and have actually spoke to the nurses about possibly preparing a little booklet for new patients. At my hospital someone comes around with a cart of snacks. I never knew in the beginning whether I had to pay for them (no) or whether my guests could have something ( sure). After several visits my daughter asked and found out that there was a coffee maker down the hall for patients and guests as well as a fridge with sodas and juices. Even later I learned that not only are the chairs heated, but that there is a button for radiant heat that is aimed right at my chair and that the TV is equipped with a DVD player. There is a hook up for my iPad and my daughter heard the nurse say they had extra cords if needed. The point is, don't waste time being hungry or cold like I did, ask the first day! I always bring a book,my iPad, some crocheting, a snack, and bottled water. A nice sized tote bag is helpful. and definitely comfy clothes.
One more thing, listen to Randy, we are ALL terminal from the moment we are born. Don't let that word eat at you.
Peace - Janet

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Diagnosed at 47 years old - never smoked
3 amazing children, now 27, 25, and 24
Married 30 years

12/22/06 Diagnosed NSCLC Stage IV - Adnocarcinoma
Tumor in Rt Lung, 3 on Spine, one on the Pons of the brain
Radiation to the spine
Fractionated Linac Stereotactic Radiotherapy to the Pons of the brain

2/15/07 Start Tarceva 150 mg
4 1/2 years of "no progression of disease"

4/11/11 New mets on brain, Gamma Knife Radiation
Probable Leptomeningeal Disease.
Start "pulsing Tarceva" 1500mg 1xweek

7/11 - Brain mets swelling as an after effect of Gamma Knife, put on anti seizure meds, steroids.
New mets on spine and lung - watching.

9/11 - No new growth in Brain - more growth on spine and ribs. Back to Tarceva 100mg daily, adding Avastin every 3 weeks.

12/11 - Scans show no new growth, some mets stable, others have shrunk!

12/22/11 - 5 year survivor!!!!!

7/20/12 - scans show new growth in lungs and spine. Staying on Tarceva and Avastin and adding Alimta and Carboplatin.

10/12 Taken off Alimta and Carboplatin due to extreme side effects, continuing on Tarceva and Avastin - scans stable

Winter/13. Scans show growth again. Bones, lungs, lymph nodes, spleen. Time to look into clinical trials

4/13. Started clinical trial at Yale AP26113 by ARIAD, a "second generation Tarceva", side effects so far, diarrhea and nausea.

My story - http://lungevity.org/l_community/viewtopic.php?f=47&t=46162

oh and you can ask about neck pillows also! Our infusion center had a group of ladies from a local church that got together and sewed a bunch every week for free for patients!

_________________
April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!

Hello everyone. Thank you for your kind words, advise and questions. It means a lot to hear about your experiences and how everything has been working out.

Diane, dad will be getting carboplatin and pemetrexed, then bevacizumab will be added at cycle 2. I am not sure if each cycle is the same but for dad 1 cycle = 3 week period.

The oncologist asked us to get folate (400 mcg) but she also said a multivitamin was good as long as it had at least that amount of mcg. And she also said that dad will be getting a B12 shot the day of the chemo. For meds, he was prescribed to take 4mg of dexamethasone (steroid) twice daily on the day before, day of, and day after chemo. Also, he is to take 8 mg zofran every 8 hrs on days 2,3,4, of chemo with day 1 being chemo day.

Randy: this is good to know. Actually the oncologist was very specific about not giving us a "life span". The terminal words was used on a document provided for my work. As I mentioned before I am in the military and was getting ready to go to an Army school when my dad had the minor stroke, so the school was cancelled. Now, the powers that be had the brilliant idea of sending me to Korea for a year before the next available school next Summer. So, I am applying for a compassionate reassignment to stay in my current location, and for them medical documents have to be morbidly detailed. This is about the only secret am keeping from dad at this time because I do not want him to stress about additional things. Luckily if I end up having to go, my brother is in town also. But I am praying fervently that I am allowed to stay here with my parents.

Eric: thank you for your words and uplifting attitude. Your reply made me smile. I needed that today. I have heard that caregivers need to take care of themselves to ensure they don't get burned out, and for the past two three weeks I have been going non stop. It finally caught up with me today, and had a minor meltdown in the bathroom as I suddenly thought out of nowhere: "what if dad never gets to walk me down the isle". And the water works started. Luckily my parents were out with my brother. So you have no idea what being able to smile today means to me. Thank you.

JanetB: thank you for the advise and your encouragement.

This has been quite a journey so far, and I feel a bit helpless because I thought my dad was invincible. So, today I found out that my application for the Team LUNGevity marathon team accepted my application to run the Chicago marathon and I am so ecstatic! Running is something I love doing and I feel like I am sharing with dad something I love and know he will be proud of. Anyhow, I feel the water works coming, so I will leave it at that! Thanks again!

Maria

thanks for posting up! Rule #1 take care of yourself to take care of others!!!

Post up whenever you want and whenever you want about anything! Even if to write to get things off your mind!

Questions about side effects we can also help with since we know what Dad is on right now.

_________________
April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!