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Dazed & Confused

cb guy
Posts: 3
Joined: May 2010

So I have just recently joined this lung cancer club. I am the husband of cb girl.

Was first given the results of my cat scan on April 1st and got the results of my bronchoscopy on my 55th birthday. Had brain MRI and it was clear. Had pet scan which seemed to indicate the cancer was confined to my lungs -- but unfortunately it is in both lungs. Original plan was to remove the upper lobe of my right lung, and after recovery to attack the left lung with radiation and/or chemo. Last week went in for surgery but the first thing they do is biopsy lymph nodes to be sure it has not spread to the nodes -- was told they would not do the surgery if it showed positive in the nodes. Well, of 3 nodes, one came back positive so they did not continue with the surgery.

Yesterday had meeting with the oncologist for plan B which is to start with chemo -- cisplatin and gemcitobin in a 3 wk cycle. The cancer center we have been using is a 2 1/2 hr drive from home but has a good reputation (it is located at a Florida University). We were hopeful of getting a good plan, but feel a little let down after yesterday's meeting (reference my wife's post as cb girl).

So now I feel a little discombobulated as what the heck to do (as if I wasn't already discombobulated)! I felt I was doing well overall with keeping a positive attitude until yesterday.

So I guess we will try now for a second opinion (which we had been discussing anyway). It seems so hard to try to figure what is the right thing to do and there is so much information and dis-information it is mind boggling.

Can anyone provide any insight on where to get info such as:

Where to go for second opinions (places with good reputations). Should you try to go to a center that has high marks -- like Mayo in Minnesota or MD Anderson (neither of which accepts my insurance) -- or even your local cancer center (We live in Florida).

What are the statistics for enduring a chemo regimen? Is it going to prolong my life for any significant amount of time -- is there really any benefit from chemo?

Etc, etc, etc.

Thanks

Dazed and confused but trying to keep smiling.

cb guy
Posts: 3
Joined: May 2010

I guess I should have added the specifics -- they say I have non-small cell cancer specifically squamous cell. And although I had smoked for a few short time periods in my younger years, I never really was a "smoker" and it has been 20 years since I had a cigarette.

choosehope
Posts: 12
Joined: May 2010

You certainly are entitiled to feel dazed and confused. Any cancer diagnosis is devastating. So feel sorry for yourself now, but set a time when you will stop so that you can put it behind you and start to think of a battle plan. Tell your girlfriend to do the same. I can't advise you on where to go now as I was never in that position so I can't relate. I am a military dependent in San Antonio and have 2 of the best hospitals around. Injured soldiers are brought here so I am blessed in the care I've received.
It doesn't matter now if you smoked or not (I was a light smoker), don't blame yourself. I did that for awhile but I had to get over it so that all my focus was on staying strong and positive for treatment.
You aren't alone, and you can always find a friend here.

choosehope
Posts: 12
Joined: May 2010

You certainly are entitiled to feel dazed and confused. Any cancer diagnosis is devastating. So feel sorry for yourself now, but set a time when you will stop so that you can put it behind you and start to think of a battle plan. Tell your girlfriend to do the same. I can't advise you on where to go now as I was never in that position so I can't relate. I am a military dependent in San Antonio and have 2 of the best hospitals around. Injured soldiers are brought here so I am blessed in the care I've received.
It doesn't matter now if you smoked or not (I was a light smoker), don't blame yourself. I did that for awhile but I had to get over it so that all my focus was on staying strong and positive for treatment.
You aren't alone, and you can always find a friend here.

LULLA
Posts: 7
Joined: Apr 2010

I ALSO HAVE SQUAMOUS CELL NON SMALL CELL IN BOTH AIRWAYS AND SUSPECTED LYMPH NODE INVOLVEMENT (LYMPH NODES NOT BIOPSIED)I WAS GOING TO BE TREATED AT MOFFITT IN TAMPA WITH RADIATION AND CHEMO SIMULTANEOUSLY BUT IT TOOK 5 WEEKS TO GET THE APPOINTMENT TO START RADIATION ON 5/10/10.
I WAS HOPITALISED ON 5/9/10 IN MY HOME TOWN WITH MY LEFT AIRWAY BLOCKED FROM THE TUMOR GROWING THAT RAPIDLY IN THE 5 WEEK PERIOD.I LIVE IN VERO BEACH AND STARTED RADIATION ON 5/10/10 AT THE LOCAL CANCER TREATMENT CENTER CHEMO STARTED 5/12/10 ONE DAY A WEEK FOR 7 WEEKS AND RADIATION 5 DAYS A WEEK FOR 7 WEEKS.I WAS PUT ON OXYGEN 24/7, 4/23/10 WHILE WAITING TO GO TO MOFFITT MY PULMONARY DR.TOOK ME OFF THE OXYGEN THURSDAY 5/27/10 AFTER 13 RADIATION TREATMENTS AND 3 CHEMOS STATING THAT MY LUNG WAS FUNCTIONING NORMALLY THE TREATMENT WAS WORKING.
I FEEL THAT I AM GETTING BETTER AND FASTER TREATMENT LOCALLY AND REALIZE NOW THAT I AM BETTER OFF BEING IN MY HOME TOWN WITH MY FAMILY AND MY SUPPORT SYSTEM.
HANG IN THERE AND STAY ON THIS WEB SITE WE ALL NEED EACH OTHER TO GET THRU THIS HORRIBLE ILLNESS KEEP A POSITIVE ATTITUDE.

GOOD LUCK LULLA

cb guy
Posts: 3
Joined: May 2010

Thank You Lulla and to the other posters. We are going to be trying to start getting something setup here locally in Cocoa Beach.

My best to yo all

wicker_woman's picture
wicker_woman
Posts: 19
Joined: Aug 2004

cb guy,

Moffitt was on my list but I after MD Anderson told me good bye and good luck, I went to Vanderbilt in Nashville, TN. They had they most clinical trials in lung cancer at the time. I can not say enough about Vanderbilt. Their attitude towards lung cancer was "we here at Vanderbilt think there is more than one way to skin a cat" they were up for the challenge, were agressive and I'm here 8 years later. NSCL Stage III-B Large Cell. I would certainly check their web site to see what trials they have going on. My friend is also an 8 year survivor, Stage IV BAC also treated at Vanderbilt. Go where your heart tells you to go, mine sent me to Tennessee from Georgia. Good luck on your journey and keep moving forward.

Wicker

LULLA
Posts: 7
Joined: Apr 2010

PLEASE LET ME KNOW HOW THINGS ARE PROGRESSING I KNOW THAT ONCE YOU START TREATMENT YOU WILL FEEL SO MUCH BETTER.THE RADIATION AND CHEMO ARE WORKING FOR ME WITH LITTLE SIDE EFFECTS. KEEP A POSITIVE ATTITUDE ITS THE MOST IMPORTANT PART OF OUR JOURNEY AND TRY TO FIND A LOCAL SUPPORT GROUP,KEEP ON THIS WEB SITE IT HAS HELPED ME TREMENDOUSLY.

GOOD LUCK
LULLA

cb girl's picture
cb girl
Posts: 56
Joined: May 2010

I am married to cb guy. We went and saw a new onc. this past Thursday and really liked him and the staff. It was nice to not feel so overwhelmed like we did when we were at Moffitt. He begins chemo this Tuesday at a facility 15 minutes away. He'll be on cisplatin and gymzar on a 3wk cycle. Days 1 and 8 then a week off. We'll do 3 rounds and then rescan and see where we are. We are guardedly optimistic and feel much better being in familiar surroundings. This site has been so helpful in realizing we are not alone.

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

Happy to hear that you have found a place locally for your husband to receive his treatment. Having to travel a great distance, on top of having treatment, can be very tiring. My treatment center was a 45 minute drive and I would be half asleep before I even got home. LOL - good thing my husband was able to drive me ;-)

My best to you and your husband, Glenna

LULLA
Posts: 7
Joined: Apr 2010

HAPPY TO HEAR YOUR POSITIVE ATTITUDE YOU MADE THE RIGHT DECISION TO STAY LOCAL GOOD LUCK WITH YOUR TREATMENT I WILL BE ANXIOUSLY AWAITING YOUR RESULTS.
LULLA

cb girl's picture
cb girl
Posts: 56
Joined: May 2010

Well, CB guy felt pretty good the first 2 days after chemo, but day 3 and 4 are not so kind. He hasn't had any vomiting and the nausea is under control-usually he can't decide if he's hungry or nauseous-so I say eat. It's the fatigue that has really gotten him down. I don't think he expected to feel this drained and it upsets him that he doesn't have any energy. He says he's not sure how he can keep doing this and he's only had the first tx. It was cisplatin and gemzar. Next Tuesday will just be gemzar then a week off. any suggestions to help his spirits physically and emotionally?

nubis's picture
nubis
Posts: 98
Joined: Mar 2008

Dear cb girl.
I have almost 3 years supporting my husband in this journey. My advice is to think what is is normal? What is is NOT normal?. Read about your chemo and if your husband is having the rare symptoms call your doctor and ask what to do. If your husband feels tired. It is completely normal. So he needs to rest. Side effect of the chemo is lack of energy. So tell your husband it doesn't mean anything wrong. His energy will be in and out during chemo. So enjoy the days when his is with energy and support him when he needs to rest. Rent movies and have a good time at home. This is what I do with my husband. Take care.

cb girl's picture
cb girl
Posts: 56
Joined: May 2010

this second round seems much better as it is only one drug, but we will see what the next couple of days will bring since they seem to be the ones that were the hardest last week. He is feeling better about his new normal. We have a week off and start again on the 28th, but at least this time he knows that it will sap his energy and it won't be such a surprise. Thanks for the encouragement. It's always a new adjustment in this crazy club :)

daviswarren
Posts: 2
Joined: Jun 2010

If you're not absolutely comfortable with your provider - RUN, do not walk, to another. Seek advise from competent physicians.

MadelynJoe's picture
MadelynJoe
Posts: 96
Joined: Sep 2003

cb guy:

I am a 5-year NSCLC survivor. In June 2005, I had the lower lobe of my right lung removed. Fortunately, my tumor was small (2.8cm) and caught early. I did have some chemo "just in case".

I live in Germantown, TN and I was treated at West Clinic in Memphis which is aligned with MD Anderson. I do know from other members of my cancer support group that Vanderbilt University Hospital in Nashville is awesome and they offer many clinical trials.

Please look up Vanderbilt on the internet and find out how you can get a second opinion from them. If you have problems getting from Cocoa Beach to Nashville, call Angel Flight which provides free air transportation for patients traveling to receive medical care.

Chemo is "doable" - keep the faith! God bless and keep us posted.

Madelyn

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