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Carol4745

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I'm joining this forum because my husband was diagnosed in September 2016 with stage 4 lung cancer. He is currently on Alimta maintenance. He has been doing well but is developing kidney issues, it seems no matter how much water he drinks. I'm looking for all the information I can about this terrible disease to help us manage it better, and hopefully, find some encouragement. Carol 

 

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Welcome, Carol. This website is a good place to find info, both from Lung Cancer 101 (from the homepage) and on this forum,  from survivors.  You'll also find hope and encouragement. I  was diagnosed with 1A  and had lobectomy in November 2016. Undoubtedly you'll hear soon from some long-term survivors of Stage 4 cancers, who are pretty inspiring. I hope some can share experience with Alimta. I'll be thinking of you and your husband. Hang in there!

Bridget

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Hi Carol

I was just diagnosed stage 4 nsclc adenocarcinoma in March of this year. I have had 3 treatments of Keytruda and radiation to my spine and lung. I just wanted to tell you that this forum is so inspiring and makes me believe I will live forever! My dr gives me a year, but I can't wait to prove him so wrong!
I will pray for your husband and you because I truly believe none of us will get out of this without God's strength.
My Dad had several cancers in his life and he lived to 95, and did not die from cancer! He always said never give up. NEVER GIVE UP!

Suzanne




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Thanks so much, Suzanne. You stay positive as well. I can't believe a doctor would presume to give you a limit to how long you're going to live. I'm sure with your attitude you will prove him wrong. I'm on another site, Inspire, and there are many people there who had the same diagnosis and are living well past a year ... some 10 years so far. And with all the new drugs, I expect you and my husband to be here a long time.  Our biggest concern right now are his kidneys... He will be unable to continue with the Alimta if we can't get his creatinine level down. He's drinking as much water as he can and is also getting infusions of water, but it still stays stubbornly high. I'm looking for diet suggestions now to see if maybe that will help him. Thanks for your reply!  

Carol 

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Hey Carol - As a "rookie" in this fight with cancer, I have also got many questions, but I can promise you this, not only do you have a vast amount of knowledge within this site; But, asking us to hold you and yours up in
PRAYER, well, let me tell you this, you have now jumped into "Daniel and his Lion's Den" for the prayer warriors to become engaged!

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Carol,
I remember they used to give my husband IV fluids before infusion and his creatinine numbers went way high. I would suggest seeing an endocrinologist for sure to monitor and control the creatinine numbers. If necessary they may refer him to a Nephrologist.

It is possible to drink too much water, ask doctor about recommended intake for his condition.

Will keep y'all in our thoughts and prayers. Hope this helps.

Vivian



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Thanks, Big Heart! I feel the prayers. 

And thanks, Vivian, for the good advice. It does seem like the more he drinks the higher his creatinine, and now the infusions of fluid are not doing very much to bring it down. We're being treated at a comprehensive cancer center, and our oncologist is very good about referring us to other docs. Will ask about endocrinologist and/or nephrologist.  I'm concerned that too much fluid will deplete his system of vitamins and minerals he needs. And thanks for the prayers.

Carol 

 

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Carol,

Hi! I am also stage IV adenocarcinoma. I was on Alimta for about six months between my standard first line chemo and the immunotherapy I am on now. My creatinine levels were always normal on Alimta, but started fluctuating about a year after starting Nivolumab. What are his numbers? I took a treatment break at 1.8 and took prednisone for a short time to see if that would get it back under control. It has lowered a little and stabilized around 1.4, but they won't give me IV contrast with my scans unless it is <1.3 (?) I have a referral from my PCP to a nephrologist, but need to reschedule the appointment because I have a conflict. Make sure he dos drink the proper amount of water, don't use ibuprofen, get plenty of sleep, stay active and try eating things like: cauliflower, berries, cucumber, cherries, dried apricots and incorporate chamomile tea, cinnamon, lemon juice, cranberry juice and limit salt intake, dairy and other foods high in potassium and calcium. Maybe if I was more diligent about those things, mine would be lower too. I'll let you know if I get in to see a specialist soon.

 

cindy

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Carol,

Welcome here.  

For encouragement, if I can live, so can your husband.

My wife has a masters degree in nutrition and is an RN.  She says for diet: reduce meat consumption because creatinine results from breaking down proteins.  And a consultation with a Nephrologist is the right next step.

Stay the course.

Tom

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Carol,
Hang in there...
My husband was diagnosed July 2014 stage IV. I couldn't remember much about Alimta as he has been on several medicines, so I looked it up.

It says he is supposed to get Dexamethasone aka Decadron the day before, the day of and the day after. Boy do I remember that causes sky high blood glucose numbers and I think it can cause high creatinine numbers. Your husband probably needs to see an endocrinologist, if he wasn't diabetic before he may be now.

The good news, it can all be managed. Don't be scared to ask questions or to call or my chart message his doctors. No reason to wait for next appointment to get answers you need.

Take care,
Vivian




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Hi Everyone - Thanks so much for the good advice and the encouragement. We don't eat much meat, but we're tying to eliminate it with veggie soups and tofu (he hates tofu:)).  Cindy - I'm not sure if your docs and ours are using the same scale. For us, his creatinine needs to be below 1.6 in order to continue with his Alimta (but above 1.27 is considered high).  It was high last cycle, but with IV hydration it got below 1.6 so he could have an infusion in early June. Now, though, it's spiked up to 2.6, and has come down with hydration to 2.1. He's going to continue with IV hydration this week, and we're seeing our oncologist next week. They did ultra sound of his kidneys and bladder and a urinalysis and that was all normal. I know that people have taken a break from Alimta, which is scary, but that may be the best choice. He was on carboplatin/alimta for four cycles and now has been on Alimta every four weeks since January with no progression.  How long was your treatment break?

 

Hi Vivian - Yes, he took that Dexamethasone the day before his last infusion, but we've stopped the Decadron after. He had a lot more nausea, though, this time. 

Thanks, Tom, for the good advice. It sounds like a nephrologist is our next step. 

Thanks everyone for all the encouragement :)) It means a lot. 

Carol 

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Hi, Carol,

Welcome to LCSC. I am glad to see that you've already connected with so many of our members. This is a great community to ask questions and share your experience with other caregivers, patients/survivors, and advocates. Please let me know if you'd like to learn more about LUNGevity's programs and resources for caregivers and I will be happy to connect with you.

We are here for you!

With gratidue,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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