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Am new here with stage 4 nonsmall cell lung cancer with bone and lymph node mets

Sue_J
Posts: 15
Joined: Apr 2012

Hello,
I just found this Board, and am hoping to learn from all of you as I venture along this journey. After 2 weeks of testing, a port-a-cath insertion, etc I began treatment on Friday the 13th with carboplatin and alimta. The weekend was pretty unremarkable except for inactive nausea and fatigue, but the "metal mouth" I had been warned about came on.
Yesterday was just so hard, cramping and extreme bowel problems (never thought I would post something like that), exhaustion, nausea and developing mouth sores. Called the oncologists' office and was reasured all this is normal.....am on an every 3 week treatment with instructions to remain inside the 2nd week due to dropping blood counts.
Am hoping someone can share about getting down enough fluids, about how to best handle the overwhelming fatigue, and how to add in all the food and liquids one needs to make it work with enough calories and fluids? Seems all I do is eat and drink!
Thank you for letting me join your group. I look forward to learning a great deal.

Sue_J

feistyD's picture
feistyD
Posts: 21
Joined: Nov 2011

Hi Sue, welcome to our world. It seems each of us has a different experience with our cancer and with our treatments. When I had the "metal mouth" from Gemzar and Taxotere, I found lemon drops or Altoids helped mask it. Smoothies or milkshakes are a good way to get calories. I would go to Pinkberry when I could eat nothing else. Right now I am on Cisplatin and Taxol, and my appetite is only affected for a couple of days, with no "metal mouth". It's been a year for me now since my diagnosis, which is very similar to yours, Stage IV with bone mets, and I am still around, still working, doing OK, so have hope.

Sue_J
Posts: 15
Joined: Apr 2012

Hi feistyD,
Thanks for the food information so much, I had found lemon flavor and eat a lot of the "Lemon Ice" in between, but haven't tried Altoids. My hubby will go get some ice cream today to add to my little milkshakes of skim milk and Carnation instant breakfast.
Another thing I think I learned from you, did they change your chemo after a period of time? Guess had misunderstood and thought that one drug combo would be what someone stayed on?
I really appreciate your sharing, the timeline given to me was very short to a few years, then I saw some cancer center's ad on tv that said, God didn't stamp an expiration date on you! Made me feel better, just like you sharing your story.

Thank you,
Sue_J

Dapsterd's picture
Dapsterd
Posts: 291
Joined: Jun 2010

Hello SueJ...Welcome.

Sounds normal to me, but your side effects came on rather qiuckly it seems....not much advice other than do what the docs say. Mt only side effect was fatique and hair loss, but my chemo formula was a bit different.

My appetite actually increased!!

Stay tuned in....just let the miracle happen.

Two yrs now since Dx!!

Dave
48 yr old STage IV NSC Adeno-Car w/brain mets

Sue_J
Posts: 15
Joined: Apr 2012

Hi Dapsterd,
Thanks so much for your post. I had thought the side effects came on really quickly also! Just wasn't expecting them. One of the chemo nurses sent me info on both drugs that I didn't already have, and both talked about the abdominal pain that is so rough. Sure don't mean to complain as I have read through many of the wonderfully brave posts here; am just trying to learn since it is less than a month since I even found out.
Your story gives me hope. Thanks, Dave.

Sue_J

feistyD's picture
feistyD
Posts: 21
Joined: Nov 2011

Hi Sue, I've been on this journey for a year, and two things I've learned is everyone's journey is different, and nothing is what you expect. For example, it took weeks for the doctors to figure out what I had, and more weeks to start any treatment. I guess I thought they would know right away, and start me on treatment right away. In my case I went to one cancer hospital where I was given one chemo combination (gemzar/taxotere) for eight rounds (about five months), and was told to get my affairs in order. I went to another cancer center at a major research university for a second opinion, where I found a doctor with a more aggressive approach whom I really respect. After genetic testing of my tumor, he has me on a second-line series of chemo (cisplatin/taxol). Now I am looking into getting another approach at a third major university to see if they will do stereotactic radiation on my lung tumors. Different hospitals have different protocols, and I am lucky enough to live in California in close proximity to these major cancer research institutions.

As far as the effects of the chemo, also everyone is different. I lost my hair, of course, but I only feel sick for a day or two after the infusion. I have still kept working through all this because it helps me feel normal. All I want is my normal life back, so I do everything as if it is. Do whatever you need to do to feel normal and happy. And ask for meds to help you with your symptoms. Good luck!

dennycee
Posts: 658
Joined: Mar 2011

Complain away! Staying hydrated is the hardest part. I kept fruit cups. jello, applesauce and other snacks with high fluid contents next to my bed. I always drank the left over fruit syrup or juice. Because fatigue can be so hard to overcome when going through treatment, I kept 2 bottles of water or juice next to me in bed. Camelbak makes a bottle with a nipple that you have to bite on gently to get fluid out. Keeps messes down!

The steroids made me ravenous. I ate 6-7 small meals a day. They also made me grouchy. My face looked like an emoticon. Hang in there, you have a great attitude.

Edited to add that I passed both my expiration dates and am not slowing down. I am stage 4 nsnlc adenocarcinoma with mets to lymph nodes, other lung and liver. If you saw me on the street you would never guess that I am a survivor. There is a man on inspire.com that has survived 13 years with nsclc with brain mets. Expect that your taste buds will change temporarily.

My best to you.

sirwmscott
Posts: 12
Joined: Sep 2011

Sue, What a quick diagnosis! My mother has stage iv w/ mets to ribs and lymph nodes. She is 79 and was diagnosed 9 months ago. She had 4 treatments of carboplatin and alimta. There was some shrinkage of lymph nodes and tumor now stable. After 4 treatments she is on maintenance of just alimta every 3-4 weeks.

She used biotene for mouth sores; radishes for stomach pain; and drinks at least 4 bottles of water every day - the colder the better. She ate very bland food - cream of wheat, fruit cups, jello and pureed soups. Now - she eats everything - just very little - 3 - 4 tablespoons at a time. Apple slices and cheese have always been a staple.

I agree with one of the post - everyone is different and your responses will be different. The one thing that has stayed the same throughout all treatments is that Mom is good for the first couple of days after chemo. She always has treatments on Wednesday and Sunday is the worst followed by about 3 or 4 days of extreme fatigue then things get better.

We get results of CT on Wednesday and are hoping for another 8 weeks of stable diesease!

Best of luck to you - you will be in our thoughts as you continue this journey.

Sue_J
Posts: 15
Joined: Apr 2012

Thank you for your suggestions and comments. Believe me, I will try them all. Finally after 5 days of feeling so very awful, I am much better....only with the fatigue left.

srwm - Prayers for a good result on Wednesday. How lucky your Mother is to have you!Radishes huh? Never would have thought about that!

It is so good to know that everyone's journey is different, and that many different centers offer differing treatment. I will certainly keep this in mind.

dennycee-thank you for the eating suggestions. That first week I wanted nothing, but forced what I could. Even more, thank you for the hope you have shared with me. Every time I cough or anything, my mind goes where it shouldn't. Now, from you, I can believe things are possible. Worth more than the world!

feistdee- you said it best, I too just want my life back! Learning to search for other treatments after completing this first round and to consider other things is a new consideration since I still feel so scared. Losing my hair, I think I am ready for-have my scarfs ready!

Thank you all. Gentle hugs,
Sue

mamacita5's picture
mamacita5
Posts: 254
Joined: May 2010

I found chewing fresh coconut helped with metal mouth AND calmed my stomach. My hubby got really good at cracking those babies open!

Sue_J
Posts: 15
Joined: Apr 2012

Hi Mamacita5,
Thank you so much for your suggestion. I have found that ginger helps a lot with my stomach....have bought pickled ginger like used on souchi, but must rinse it at least twice in tap water before eating it. It does help. Our FL grocery store also carries it in the refrigerated part of the produce section in a paste with sugar. Actually my surgeon suggested it; he was raised in Spain and his mother always treated the kids with it.

Will definately try the coconut. Hope my dear hubby can crack them! LOL! Visions of my labrador Service Dog having a great time chasing them out the door.

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