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Does it get worse before it gets better?


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Hi,

Not sure where to start or why I'm posting...other than just trying to figure out where we are. Mom is completely fatigued. She can't even imagine feeling this way for much longer. She just has NO energy. I took her over the weekend to a friend's wedding. I have been friends with the bride since 3rd grade and Mom didn't want to miss her wedding. But I'm afraid we might have not been careful enough...she was in week 2 of the 2nd cycle. Basically 6 weeks into chemo and she had just received the gemzar/carbo on Thursday. But at the wedding she was shaking hands with many people and her blood counts were probably low. This afternoon after running errands I stopped by her house (my grandpa's home) and kissed her on the couch. She had obviously been there all day. I knew the weekend trip up to the wedding probably wore her out. But when I kissed her 'hello' she was burning up. Had a fever of 101.7. Her cheeks were flushed and she was sweating. I called her oncologist and he prescribed an antibiotic. After running to 2 pharmacies (because of computer crashes at Walgreens) I finally got her the meds. I got some dinner prepared for her & she actually had an appetite. This was NEW for her. But around 9pm I realized I should get home to see my family (kids) before bed. Just as I was leaving Mom starts throwing up her dinner...along with a bunch of stuff from within her lungs. The normal stuff she spits up daily. The hardest thing is that Mom's vomiting all this time has been about 10% chemo related and 90% from a trigger in her throat when she coughs. And she gets into some serious coughing spells. The 2 lymph nodes in her chest seem to be putting pressure on her trachea or asophogus & when she coughs....it triggers the food to come right back up. So, there went dinner.

She's lost another 11 lbs in the last 2 weeks. When the dr. saw that she had lost another 6 lbs between her weekly chemo appointments at her last chemo appt, he prescribed an appetite stimulant for her. Well, she had picked it up herself and while walking back to her car happened to notice the amount that was automatically deducted from her checking....$489 !!! Blue Cross did not cover this med! So, she ran right back in & returned the meds!! She said, "Oh, I think I'll just use self control and FORCE myself to eat...." =)

But thanks to the Lance Armstrong foundation and Patient Advocate services, we are now applying for a bunch of programs that will start helping us financially. They all have different programs & services. One will reimburse us for what we've paid so far and then start paying for ALL meds from here on, one will cover all costs for transportation and one will pay some of the insurance co-pays!! I'll send another email with all the program names that I have been instructed to apply for by a social worker through Patient Advocate. That's the good news I've received.

But the last thing I wanted to mention was that because Mom started seeing double vision last week when she threw up, her dr. has requested an MRI. Don't get me wrong, I feel that she should have had this from the beginning because of the nature of lung cancer....but as with all tests, it comes with more anxiety and depression....I am a nervous wreck once again. Mainly because the dr. is concerned...so that makes me concerned. She is having it done tomorrow at 8:30am. We'll get results Thursday. She is also completely winded so he has also requested another chest x-ray because he thinks she might have another plural effusion and will need another thoracentesis. I hope she gets one soon because she is SO out of breath. I know it's adding to her loss of energy.

I know you all know what I'm talking about when I say how difficult it is to watch someone become so weak and sick....She said tonight, "What if I don't get a chemo break? What if he wants to continue this?...." I didn't know what to say. He wants to do another PET scan after the 3rd cycle. But then what?????

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I guess doctors do things differently, but when Harry runs a fever, they admit him to the hospital. They keep him there until they find out where the infection is, and the best antibiotic to use to treat it. He gets it all in IV form.

I'm so sorry for your Mom, and for you too. I hope they can figure out a way to make her feel more comfortable, and also that she'll be able to keep her meals down, so she can gain some weight back.

Is she on medication for nausea? I can't imagine feeling nauseated all the time... :(

Take care,

Nova

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Bless your and mom's heart! I am so sorry that it is so tough. To answer your initial question...I do think it gets worse before it gets better. It seemed like that in our situation. Dad was completely stripped of the person he was. We kept telling him that if he could continue just being semi-comfy sitting in his chair and watching the birds, it would eventually get better. Just this weekend he went on the roller coaster at Arnold's Park!

Stay strong and know we are here for you!

Blessings,

Jen

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FYI - Tony would spike 102+ fevers/sweats while on Gemzar (and other chemo regimens) and he's never been in the hospital since his initial surgery. We figure the fevers are his body's way of reacting to the chemo and we always took it as a good sign that the chemo was working. We are a little twisted though... :shock:

If it is a chemo reaction, you'll see it repeat after each cycle. They put him on antibiotics the first time this happened, but since then we realized this would be an every cycle event.

Best of luck to your Mom on her treatment and weight gain. I hope it is nothing more serious then a chemo reaction.

Welthy

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