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Shelkay1

Chemo Questions

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Thanks all, this really isn't fun. Steroids are all finished for this round. Hoping to crash into la good sleep soon. Never experienced the eating rage you describe. Nothing is appealing, only eating because I know I have to. From what I continue to read, charting is good because effects will be almost the same next time; I've been doing that. Are side effects cumulative, meaning do they worsen with each infusion or stay about the same? 

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Hang in there, Shel.  I don't have any info/suggestions, just sending an encouraging word.  I hope the next round is easier on you.

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For me, the side effects were cumulative with the Cisplatin/Alimta.  Super Doc prescribed 2 different anti-nausea meds so that I could alternate them throughout the day without overdosing on one or the other. My appetite came back on Wednesdays and I always wanted lemonade and chicken tenders.  Because I ate so many bananas and drank so much ginger ale during chemo, it was almost a year before I could tolerate either of those.  Hang in there.  There is a finish line in sight.

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I found each infusion had increased side effects, earlier and longer. I agree with Tom....get ahead of the nausea by taking meds soon.

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I had old fashion Taxol and Carboplatin. My side effects were not cumulative (did not increase over time). 

After my steroid induced appetite, my taste buds became challenged and my appetite waned. My wife (a dietitian) read that mint flavoring was often satisfying to those with my chemo recipe. She made chocolate mint chip ice cream and it sustained me during the middle week of my 3-week cycle. For variety, she’d make Oreo chocolate mint ice cream. 

Peppermint life savers also became a fix for my metallic mouth syndrome. I also cultivated a taste for tart flavor and preferred unsweetened cranberry juice. 

Stay the course. 

Tom

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Hang in there Shelkay,  we dealt with it because we had to. Mine wasn't as bad as some,, but it's never any fun. You can complain and vent here has much asa you want. Maybe some of our suggestions will help, maybe not. In any event, we understand.

 

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Thankfully relief has come! I slept about 7 hours last night & was even able to work 4 hours today. Now I have a better idea if when things will start & stop, I know next time "this too shall pass".

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Hi, Shelkay,

Just wanted to check in and see how you're doing. Please post an update when you can!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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Thanks for checking. I'm doing okay right now. Day 3, 4 & 5 following my 1st infusion were rather miserable, but once I was past those it has been much easier. Some of my white cell counts have dropped really low; waiting to talk with my oncologist tomorrow to see if they want to do anything about it or just for me to be extra cautious around others.  My work has been great with me working a limited schedule & they set me up in a private office to minimize my chances of exposure to others. The cycle starts all over again next Thursday,; even though I know what to expect, I also know it will only last a few days.

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I’m glad that your work has been so supportive! Good luck with this next cycle. We’ll be thinking of you and hoping that it’s a bit better this time around.

With gratitude,

Lauren

Digital Community Manager
LUNGevity Foundation

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My 2nd chemo was on 11/15, I had some different & longer lasting side effects from the first time. I can't wait to see what fun #3 has in store for me!

I have great medical insurance, I do pay extra since I've had ongoing health issues other than lung cancer. Except for my deductable, everything has been covered for my testing, lobectomy & treatments.  I just saw the bills for my chemo treatments alone & was floored! How does anyone who is un/under insured survive this financially? Fighting this disease is hard enough physically, emotionally and mentally... but to have to worry about the financial too??  I guess maybe all this is where we can thank the "Obama Care" program for making sure everyone has insurance & the lifetime maximum insurance payouts have been removed. 

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Hi Shelkay, I have great medical insurance, too, for which i'm grateful. I got my current coverage in January 2008 , had a mammogram and and was diagnosed with breast cancer, the first of my three cancers.  I was also retired at that time, so didn't have to worry about work. So I guess you could say I was well situated to deal with cancer. Ugh!  I agree with you that it's hard enough to deal with this disease without bing financially devastated too.

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I wonder if any one in this forum requested a second opinion about lung cancer. And is it a good idea after your doctor says your cancer is inoperable? I look forward to your feedback! Thanks!

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Bob's right. Many of the reasons cancer is deemed "inoperable" are, for surgeons, no-brainers.  They include situations where the cancer has spread significantly or where the tumor's location makes it too dangerous to operate.

You said that the PET scan showed your cancer had spread "all over."  That pretty much takes it out of the realm of operability.  

You said you have a biopsy scheduled soon.   That might provide all the information needed to make an initial treatment plan.  At that point, depending on what's being recommended, you might want another opinion.  Right now, though, anyone you see is going to agree surgery is impossible and require a biopsy to determine the most appropriate treatment.

 

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Third infusion of Cisplatin/Alimta was on Thursday. Side effects started that same evening. I've had a major headache for the last several weeks that just will not go away & some swelling around my eyes. Doctor has ordered an MRI of my brain (12/20) to make sure it's not metastasized there. When they did the lobectomy, they were unable to get all the cancer & on the TNM scale my M was labeled as X because of unknowns. I've been reading up on this & I see there is a 30%-40% chance of brain metasis & that chemo does not cross over & help destroy any cancer cells getting to the brain. I know I should stop reading so much!

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Hang in there, Shelkay! Waiting is terrible, I know. Until you have this checked out, you won't know for sure if your headaches are even cancer-related. Or side-effect related. I'm sending good thoughts your way.

 

 

 

 

 

 

 

 

 

 

 

 

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Thanks Laurel & Bridget, I find myself thinking of the worst possible scenarios when I'm feeling my worst & unable to sleep. I know I need to chill & just wait for the MRI results, think positively in the meantime & enjoy Christmastime with my family. 

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To give my mind a respite, I went to youtube.com and would do 5 minute meditation videos. As I felt a little shift in attitude, I might pull up music....like Happy by Pharell or poker face by Lady Gaga. Sending hugs.

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Hi Shelkay,

Totally understand how sleep can be elusive.  You might want to check out some white noise sound machines to help you sleep.  We found a great one on Amazon- (sound+sleep for $84) Every  night I listen to the ocean (birds, buoy bells included).  If I’m listening intently there’s no room left in my brain for the worry monster. This little box wasn’t cheap but a good night’s rest is priceless.  

Tom Petty got it right- the waiting is the hardest part.  Hang in there. 

Michelle 

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