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Pleural effusion -- do I really need to cancel my cruise?


Yorktown Linda

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Hi all,

Okay, saw my oncologist yesterday. I’ve been extremely weak and short of breath. My cough is back and I’m hoarse. I have constant back pain, which is exacerbated by coughing. All in all, not good. He listened to my lungs and sent me for a stat chest x-ray, wet reading. He also said that he thought the hoarseness was caused by a swollen lymph node pressing on my vocal cord nerve. He called my first surgeon and asked him to stand by in case I needed to have fluid drained from my lungs. Uh oh!

The radiologist said I had some fluid in my lower left lung (no longer have an upper left and the right was okay). She also said there was some consolidation (infiltrate) and the lung was partially collapsed. She didn’t feel that there was enough fluid to merit tapping or draining and sent me on my way.

I called my oncologist, who set up an appointment for tomorrow, started me on a new antibiotic (biaxin), said it appeared that the chemo was not working, said we should be thinking about changing drugs( gezmar instead of taxotere), and suggested that I think about cancelling my cruise – Feb. 1st through the 13th.

Well, I am not willing to cancel my cruise, so I guess I’m going to have a fight on my hands. Fortunately, we are sailing from NJ (about an hour’s drive from home), so air travel is not an issue. If, as it appears, my long term prognosis is not great, it’s definitely time to have some fun and create some good memories. Before I saw the oncologist yesterday, I was thinking of stopping the chemo as I agree that it is not working (tumor markers continue to rise) and I haven’t have a full day out of bed for months. It appears now that many of my symptoms are from the pneumonia and not the chemo, so I’m willing to reconsider. Bu I want my cruise first!! I can always take some biaxin with me in case the cough comes back and if everything goes to hell in a hand-basket, I do have insurance so the Coast Guard can airlift me to a hospital somewhere – don’t really expect that to happen though.

Anyway, that was yesterday. Today my hoarseness is gone! So I guess, if it was a swollen lymph node, it was swollen with bacteria and not cancer cells. My back pain is better, coughing a little less, and I feel a bit brighter. Don’t think I’ll go out dancing – I’m watching the inauguration in bed – but maybe I’m not quite as weak as I was. Hooray for antibiotics!

So that’s where I am. Short term, things are looking up. Long term, maybe not so good – but I’ll think about that tomorrow.

I hope be in the southern Caribbean for the first two weeks of February. I’ll send you all warm thoughts.

Linda

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Reading through your post Linda, it's obvious that this cruise is very important to you. I was diagnosed with cancer after having fluid drained from my lungs. Before they got the cytology report, the doctors seem mystified because I was getting better and they figured I had cancer because of the bloody fluid. Well, I was also dx'd with pneumonia and was put on IV antibiotics. It appears I was sicker from the pneumonia than from the cancer. I'm hoping that's true for you. If you are already feeling better on antibiotics, you could be feeling o.k. by your trip inspite of longer term issues. But please take all possible precautions. Any advice for Linda out there in that regard? I pushed for a trip before all this happened for me but I did fly so, any advice for Linda that will help her take all possible precautions when making this trip? I know I'd do mine all over again in spite of the outcome.

Good luck dear.

Judy in Key West

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{{{Linda}}} No real advice to offer, but wanted to let you know that I am thinking about you and hoping you will be feeling better and better each and every day.

I know this might seem like an obvious question but your symptoms sound like my mom's when she gets an abscess on her lung (once a year or so), and I was wondering if the doc has you on a steroid...the only thing (with the antibiotic) that knocks out the infection.

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Hi Linda,

Boy, do I hope you enjoy your cruise coming up. I noticed you had problems on the Taxotere with the breathing etc. My mom too. They are taking her off also. It really did a number on her out of all the chemo's she has ever been on. Anyway I hope your new chemo will be better and I hope you are feeling better real soon in time for your vacation. Enjoy!!

Get well soon-

Marci

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Linda,

The cruise all depends on how you HONESTLY feel. My cruise was prior to dx, but the onset of the pneumonia that led to the cancer's discovery. I may have picked up the pneumonia on my cruise!

Now, if you are feeling better, take the damn cruise. You may want to arrange for another x-ray in the next two weeks to see if the lung tide has receded... Remember, on the boat, the doctors aren't specialists, they are generalists and you are the mercy of the captain in regards to calling for a medivac... If you think you can handle two weeks, go for it. After all, you ain't gonna get much of a refund, if you get one at all, and with what you are dealing with, you don't know if you'll ever have this opportunity again. The REST and change of scenery may really be a plus in your mindset.

I'm all for medicating by sunshine - just stay in the shade so you don't get all red-hot-angry-red skin. My sensitivy to sunlight lingers on, five years after Iressa! Sun on my face during a half-hour drive and my face stays bright red for the rest of the day...wa-hoo.

Yep, I vote for the cruise...

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Hey Linda,

Her oncologist was thinking about Alimta I think its called. So we will see when we go for the follow up appointment. Of course I know when my mom is stable or not since I am her main caregiver and believe me did I see the change very quickly with the Taxotere. Very scary. Hope your doing better since you came off!

Take Care

Marci

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I can really appreciate the need for the sun and relaxation and I'm all about making memories. Maybe one place to start is to ask the doctor why. Find out the reasons he is concerned about you going. It may be that they are all things that you can answer, things that maybe he thinks are worrisome but you don't. I feel like you would be able to make a decision better if you had more information from the doctor. Can't hurt to ask.

And I hope you get to go and enjoy yourself, take lots of wonderful pictures and making many wonderful memories!!!

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Linda:

We both know I don't even need to post here because we both already know what I'm going to say:

TAKE THE DANG CRUISE!!!!!!

A two week break isn't life or death (and even if it is, why not go out in a blaze of glory now rather than looking and feeling like a concentration camp victim months from now?)

I actually believe that things like cruises IMPROVE our survival rates (Quality of Life!!!!) and credit my cruise last August with having at least some effect on my still being around (and looking at at yet another trip! :D)

It also sounds more like pneumonia or congestion than it does cancer so tell them to give you GIANT blasts of antibiotics in the meantime.

When I took the cruise last August, my hospice doctor put a "care package" together for me with multiple prescriptions, each with accompanying directions that said "In case of (insert symptom) take (insert quantity) for (insert time period) x amount of days."

I was fortunate in that I never had to get into it (I actually got healthier on the cruise), but it also meant I didn't have to depend on either the ship's doctor or whatever doctor saw me if I had to be medivaced (I basically became my doc's PA/RN for the duration of the trip).

Some docs are so hidebound that they won't go along with a program such as above. If yours is like that, I'd recommend you temporarily replace him/her. :D

Go for the gusto, Linda!! (Wish I was going with you, but working on Florida trip right now. :D)

Best wishes and with the greatest love and affection,

Carole

Life is not measured by the number of breaths we take, but by the moments that take our breath away.--George Carlin

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Hi, Lynn.

At this point, we don't have a clue as to where in Florida... my daughter's going to start checking out cheap fares/packages tomorrow with our primary criteria being warm and short. :D

If I had my druthers, it would be Key West (I was last there in the late 70s, loved it then and would love to see it again), but we're afraid the length of the trip (2 legs) would be too much for me. If my doc says okay (the TIA may have put a twist in things), the most likely flight would be a direct Denver-Miiami with a stay at a nearby resort.

Affectionately,

Carole

One's destination is never a place, but a new way of seeing things.--Henry Miller

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