What advice would you give to a new caregiver? (Think back, what helped or what would you have wished someone said or explained to you when your loved one was first dx. with lung cancer?)

_________________
- Katie Brown, Co-Founder and Director of LCSC-

15 yr cancer survivor.

"Any of us who have experienced the cancer journey- and survived it-
have an obligation to make the path clearer and aid those that come after us."
- Lance Armstrong

In memory of Jessee Dewey, SCLC
December 29, 1938 - September 6, 2003
Lisa Dewey- Jan. 22, 2007
my parents are together in heaven


facebook www.facebook.com/lungevity

Get a 2nd opinion.

Get a 3rd opinion.

Join a support group, on line is great. LCSC saved my sanity on many occasion and answered many of my questions. Thank you Katie.

Take other family members or friends to every drs. appt. Tape what the dr. has to say. You will not remember it all, I guarantee that.

Tell the person with LC that you love them everyday.

Encourage a normal life as much as possible.

Liquids, liquids, liquids.

_________________
Ginny
Please use gdecoursey@aol.com for email.

Earl born 1/28/42 - dx 9/21/02 - died 8/18/04. He was the sunshine of my life.

well, you know I don't have to think back very far - so I'm not sure how much value I will add but 'ditto' to everything ginny said, and:

* accept help. make a plan for it. i think everyone who asks can help in some way.
* allow yourself your own time and space to keep your sanity (***and check in with your gp and get some medicinal help if needed - respecting this is a personal choice***)
* if you are working a FT job while also being a caregiver - have a core group of 'back up' folks. hopefully employers will be supportive and understanding (I couldn't ask for more from mine!!) but be sure that someone can help you out if you have an unexpected absence.
* be kind to yourself - accept that you are mentally taxed, preoccupied and distracted. you will forget things, disappoint some people and perhaps withdraw from less important tasks - and it is all OK.


for me, accepting that my Mom has this illness has made me grieve to a degree and we all know that grief is very personal and unique. i have given myself the latitude to cry when I want, be alone when I want, be direct (harsh) when I want and do what I need to get myself - and my Mom - through this with no regrets or second guessing (as much as that is possible).

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My wonderful mother, 71 at diagnosis ...
6/2/09 - went to GP for shoulder pain - xrays taken, show 'shadow' in lung area
6/8 CT scan
6/12 - GP reports that 'shadow' likely to be cancer ... need more tests referred to pulminologist and oncologist.
6/14 - Appt with Pulminologist - orders PET and biopsy. I take charge and reschedule onc appt until those tests are done (what would onc tell us w/o test results)
6/18 PET, 6/19 Biopsy (CT guided needle)
6/24 - onc appt. confirming stage 3B NSCLC - tumor (4x7cm) contained to right lobe w/lymph nodes affected
6/25 - 2nd onc. appt. for 2nd opinion and verification. this doc orders MRI of brain and CT of abdomen (earlier CT showed hydronephrosis in right kidney). blood work done
6/29 - MRI and CT -- blood work showed creatinine was normal
6/30 - meet rad onc - explanation of treatment
7/2 - meet with original onc. no mets to brain, ref to urologist to check kidney. he recommneds carbo/taxol regimen and radiation
7/7 - urologist reports kidney functioning normally, no treatment recommended for kidney- move forward w/ cancer treatment
7/8 - meeting with other onc - she recommends cisplatin/topo (more aggressive) -- we decide to go that route
7/20 - 9/2: 33 rad treatmetns (or 66 gray, i think) and 2 cycles of cisplatin/topo. side effects: fatigue, hair loss, low red and white cell counts, fatigue, lump in throat, some taste issues and (did i mention) fatigue.
9/4: 2 units of blood transfused
9/8: red and white counts back to normal. Mom reports "firing on 7 of 8 cylinders"
9/21: CT Scan
9/24-29: wonderful and much needed beach time with family (best medicine so far!!!)
9/29: CT results: tumor shrank to 2x2cm and is now "quiet and contained". Tx break for 3 months.
12/31: CT scan showed add'l shrinkage - down to 1.9 x 1.1 - praise the Lord!!!
3/19/2010: CT scan ...results showed no areas of concern. Stability. God is good!!!
4/1/2010: Mom begins complaining of abdomen sensation "like sunburn and clothing brushing against it hurts".
4/9: visit to GP - who wrongly diagnoses as ringworm
4/15: visit to neurologist, MRI of abdomen and spine shows 2 areas of concern on 8th and 11th vertebrae.
4/20: nerve induction test shows neuropathy. Onc maintains that cancer unlikely due to clear scan just a month earlier.
5/2010-6/2011: nerve issues subsided. areas of 'concern' turn out to be nothing. good CT scan in May and November, 2010.
5/2011: CT scan shows something in adrenal gland area; PET scan reveals likely active cancer
6/2011: Onc referrs for biopsy (6/6). If cancer confirmed, radiation to follow ...

Have an awesome support system in place! and Ue this link !!!!

http://www.lotsahelpinghands.com/


Thats for starters!!!

_________________
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!!

1. Get lots of opinions until you are comfortable.

2. Be pushy (but polite b/c you get more bees with honey). You are the advocate!

3. Research, k nowledge is power

4. As Ginny said, HYDRATION is key.

5. Join a support group and ask quesitons. NO question is too silly!!!!!!

6. Anti-depresssants can be a blessing.

_________________
[size=84]Mom diagnosed 11/03; age 58; NSCLC IIIA
Carboplatin/Gemzar
3/4/04--lobectomy
5/04--completed radiation
5/05--coiling for brain anyerusm found on routine brain MRI
8/05--triple bypass
10/06--PET, brain MRI, CT clear
8/07--NED
Currently in remission/NED
2/12--Stage IV squamous cell, a new beast
4/9/12--My mom passed away

Dad diagnosed 9/06; age 65 (asymptomatic); adenocarcinoma with BAC features
9/06--Wedge resection of 1.4cm tumor
Lots of little nodules remain and a small thing on brain maybe
11/06--Stable
5/18/10--Dx with Macroglobenemia (indolent lymphoma) & nodule growth
6/10--IT'S BACK! Tarceva time
[/size]

This one might sound odd, but it helped me more than anything get through the grief and shock I experienced when my mom was diagosed.

Don't forget to be grateful for every single day you get to spend with your loved one.

Susan

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76 year-old mom diagnosed with stage IV lung cancer January 5, 2007.

15 radiation treatments to the spine and four rounds of chemo, Jan-May, 2007.

Stable disease May, 2007-May, 2008.

Bone scan May, 2008 shows new mets in the spine, pelvis and ribs.

July, 2008--finished radiation and has a Quadramet treatment.

October, 2008--Scans show mild progression. Began chemo (carbo/taxol/avistin). Will have four rounds of threatment (every 21 days) and scan in January.

01/05/2009--TWO YEAR SURVIVOR!

4/2009--STABLE! No treatment. Next scan in July

7/2009--Scan shows pleural effusion. Fluid drained and malignant. Cancer has spread to other lung and a 13 mm lesion is seen on the liver. Mom to begin Alimta on 8/3

11/2009--Alimta was hard on mom and scans showed progression.

12/2009--began Tarceva, noticed almost immediate improvement.

2/25/2010--Celebrated Mom's 80th birthday!

5/15/2010--Mom watched her oldest granddaughter graduate from college and then paritied well into the night! She's still feeling great.

6/15/2010--Mom watched her youngest granddaughter graduate from high school. Still feeling great!

8/2010-10/2010--Mom begins feeling tired and stays in bed more and more. Scans reveal that the cancer is moving rapidly throughout her body.

10/13/2010--Mom wins her battle once and for all, and passes to a place where the cancer can no longer touch her.

For a more detailed timeline see:

http://www.lungevity.org/l_community/viewtopic.php?p=360385#360385

Never be afraid to ask a question.

Never be afraid to doubt the medical team.

Accept help that is offered.

Take a break once in a while.

_________________
Caren x

____________________________
Dad (Dave) Ex smoker (quit 18 years ago)
Diagnosed 11th Ausgust '08 with Adenocarcinoma-Some Lymph Node involvement - Right lung Stage 3b.

12/09/08 Restaged to stage 4.

22nd May 2009.
The Angels came and took you from me, at 7am, while I held your hand. I love you Dad and I will never stop loving you or ever forget you.
Sleep well now, Dad (((HUG)))

Avatar is the last photo taken of dad. Taken on the 19th May 2009.


3rd September 2009,Caren has been smoke-free for 11months!!!!

NEVER and I mean NEVER believe or allow your loved one with cancer to believe that they are just another statistic. Do not allow your doctors to place a timeframe on their life. You have to believe and encourage them that they are going to make it through their toughest fight of their life. Without that drive in them, it would be that much more difficult for them to fight. And damn it, we need all of our loved ones to fight.. dont we?