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Toni Parks

Stage IV Adenocarcinoma Diagnosed Feb 18c

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Hi. I’m Toni.  I was diagnosed in Feb 18 with stage IV adenocarcinoma of both lungs.  Since the cancer is in both lungs, I was told I wasn’t a candidate for surgery, targeted therapy, the pill, and don’t have a high enough positive (30%) for immunotherapy. I have had 2 rounds of chemo (carboplatin and alimta) every 3 weeks.  The first chemo was horrific, and I was very sick for a little over a week.  I ended up getting fluids and meds. The second one better as I was prepared with meds in hand.  My main side effect is not being able to eat due to the awful taste.  Does anybody have any tips?   I’m hoping to connect with somebody with a diagnosis similar to mine. I’m 57, retired just 2 years, married, mother of 2, grandmother of 4.  Still in shock...

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Hi, Toni,

No experience, myself, with chemo, so I can't be of any help there, but wanted to welcome you.  I remember my mom couldn't eat certain food after chemo because of the taste (long time ago).  She just had to avoid certain foods.

I'm sure someone will be along who can give you some suggestions.  

Glad you found us--great group of folks here!

Teri

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Toni

Sorry you are going through this. I've been there. I don't know your particular case and I'm not a doctor, but I was diagnosed in Feb. 2017 as stage IV and had one tumor in left lung and 2 in my right lung. All were small (2cm. or less). I had SBRT radiation on all 3 tumors (a very new option at the time) followed by 4 rounds of Cisplatin and Alimta. And absolutely you are right-everything tasted nasty. In my case it tasted bitter like a pain pill tastes. What's worse is I was given steroids along with it which caused me to want to eat and when I did it tastes awful. I discovered that mint didn't taste bad and mint candies actually helped my nausea more than the nausea meds. Could also eat plain vanilla ice cream and lemon flavored things. You might try one of those. But everyone is different. Some people find using plastic utensils helpful because they taste the metallic of regular utensils. Hope some of that helps. I hated that side effect. Also I'm having Opdivo (an immunotherapy drug) as second line treatment and it has stopped the progression of my cancer. They refer to it as my disease being stable. My PD-L1 response was less than 1%. Though PD-L1 is usually a predictor of who will respond to immunotherapy for reasons they don't yet understand some people with a low PD-L1 will respond to it. I'm thankful I appear to be one of those people. I don't know the specifics of your disease, but you may have some options you weren't aware of. Chemo is without a doubt the pits, but you can do it. Any side effects you have will probably have been experienced by others here who will be glad to share solutions they found helped them. This is a very supportive support group. Glad to have you here. 

Judy M. 

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Hi Toni and welcome. I'm sorry to hear about your diagnosis, but glad you found us. You've already heard from Judy M and I suspect you'll be hearing from others who have similar diagnoses. (mine is NSCLC Stage 1a). I recall Tom G, who you'll probably hear from , talking about mint oreo ice cream being something he could eat during chemo when he couldn't eat anything else.  I wonder whether there may be other treatments available for your cancer. Have you considered a second opinion or looked into clinical trials?  Hang in there and let us know how we can support you.

Bridget O

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I have had only one chemo treatment of carboplatin and alitma on April 18. I asked for anti nausea drugs ahead of time. I also took ginger candy that I got from Amazon.com to the infusion. The Alitma infusion made me a bit nauseous and the ginger candy helped.  The third and fourth day after infusion were my worst for nausea. I had heard from many that this in usually when it starts and began anti nausea med early the third day. It sermed to help. I have had little appetite...even with steroids and have had lots of toast with honey or toast with cinnamon and sugar. My husband and I have been fighting pneumonia for 4 weeks so no second chemo scheduled for now. I hope you find relief soon.

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Toni,

Welcome here.  I'm the Tom who's wife concocted a crushed mint Oreo mint ice cream (you can make it by buying mint ice cream, letting it soften, stirring crushed Oreos into the soften ice cream, then refreezing) when my chemotherapy made everything taste horrible.  My wife has a masters degree in dietetics and normally a diet of ice cream is not considered healthy.  But, one undergoing chemotherapy needs to consume large amounts of calories to provide energy for the body to regenerate blood cells and other tissue effected by the chemo.  I often subsisted on ice cream and very tart cranberry juice for days-at-a-time.  Ginger works for some to avoid nausea but you need to eat.

Judy's suggestion to investigate precision radiation is a good one.  Many radiation oncologists are getting very aggressive in treating stage 4 disease.  Right now you are in first line therapy and we hope it is successful.  But it is prudent to plan for second line therapy because unfortunately lung cancer is persistent.  Here is information on radiation. You'll want to focus on "What are the different types of external beam radiation therapies".  The new precision radiation types are: IMRT, IGRT, SBRT and proton therapy.  I mention precision radiation because a form of SBRT called CyberKnife saved my life after 18 infusions of taxol and carboplatin did not control my lung cancer.  You may want to consult with a radiation oncologist now while in treatment.  Judy's blog about her precision radiation experience is here.  She had her radiation as a first treatment.  The order of chemotherapy and radiation does not matter.

You'll likely have more questions and this is a good place for answers.

Stay the course.

Tom

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I found acupuncture the day after chemo (in addition to, not as a substitute for prescirbed meds) to help with nausea. Fortunately I could  acupuncture it at t reasonalble price at a local subsidezed clinic.

Bridget O

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