Newly Diagnosed Esophageal - positive feedback only please

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Newly Diagnosed Esophageal - positive feedback only please

by SallyTN on Mon Sep 17, 2018 04:31 PM

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I'm a 36yo mother of a young toddler, just diagnosed with stage IV (mets to liver) EC last month. I'd had horrible reflux throughout pregnancy that of course got written off as pregnancy-related. It continued to a lesser degree afterwards and I thought it was just from the weight I'd kept on, until I went to doctor with chest pain last month. I've just started IV oxaliplatin and oral xeloda a few days ago and am feeling rough. I'm at work right now (I am current breadwinner as husband is finishing graduate school) and need a PEP TALK please!

Please tell me that mentally this will get better? I'm still mourning the inability to have another child (we were in process of trying - thank God it hadn't happened yet) which seems silly as I have to fight for my life now. 

Oh and as a special "screw you" from the oxaliplatin, it is excruciatingly painful to cry right now.

RE: Newly Diagnosed Esophageal - positive feedback only please

by kak123 on Tue Sep 18, 2018 03:19 PM

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Sally,

I am sorry you are having to deal cancer. You are very young so that is a big plus on your side. Attitude is everything right now. It makes the ordeal of chemo a little easier. You may not have the energy but you have the joy of a toddler and it does not get much better than that.

I too worked after my mastectomy and during radiation. It was tough, but it gave  my brain a little escape.

Bless you

RE: Newly Diagnosed Esophageal - positive feedback only please

by eritrea18 on Tue Sep 18, 2018 06:56 PM

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Sally,

Sorry to hear about your condition. I too was diagnized with ec that spreat to the liver last April at 61, so much older than you. I just completed 4 rounds of chemo with cesplatin and capectiabe along with herceptin with good results on scan. I belive mental attitude and staying away from any negative messages is the best approach. For me it was up and down, but for most days it was bearable. Side effects will get better with time. 

Hang in there and with your age and having a baby to care for you have a lot to live for, new medical treatments are getting by the day. Faith and good mental attitude will carry you.

God Bless and I will pray for you

RE: Newly Diagnosed Esophageal - positive feedback only please

by Wickedinns on Thu Sep 20, 2018 02:23 PM

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On Sep 17, 2018 4:31 PM SallyTN wrote:

I'm a 36yo mother of a young toddler, just diagnosed with stage IV (mets to liver) EC last month. I'd had horrible reflux throughout pregnancy that of course got written off as pregnancy-related. It continued to a lesser degree afterwards and I thought it was just from the weight I'd kept on, until I went to doctor with chest pain last month. I've just started IV oxaliplatin and oral xeloda a few days ago and am feeling rough. I'm at work right now (I am current breadwinner as husband is finishing graduate school) and need a PEP TALK please!

Please tell me that mentally this will get better? I'm still mourning the inability to have another child (we were in process of trying - thank God it hadn't happened yet) which seems silly as I have to fight for my life now. 

Oh and as a special "screw you" from the oxaliplatin, it is excruciatingly painful to cry right now.

Hi Sally My husband was dx March of 2016... adenocarcinoma stage 4 with nets to the liver...swollen lymph node and adrenal gland. Prognosis was grim but he has an amazing attitude as do I... he was also her 2 negative. He had five rounds of oxyplatin, exloda and another I forget...it was discontinued as it was not doing anything and he became blocked. He was scheduled for ten rounds of radiation but that totally shut him down after six rounds and he had a stent placed. Not all chemo work for all people but we didn’t stop there. I put him on a very healthy high calorie diet and high doses of cannabis. Then two months later we went to see if he would be a candidate for a clinical trial for keytruda. While testing him his stent came right out...a real plus !!! He was also found to be a candidate. He started in the trial end of October/ first of November 2016... we haven’t looked back. By January 2017 his tumour is either too small to see or gone alondpg with everything else except one still shrinking liver lesion. They are not even sure right now if it is even cancerous. He has had some ups and downs with the jpkeytruda but nothing so bad that we couldn’t get through it. He did have to stop it in August because his liver enzymes went too high and was put on prednisone. They have come down to an almost normal level. His last scan sept 10 showed everything the same (from the pictures as doc didn’t have the written report yet). We will have more answers next appointment mid October where more decisions will be made. He was just shy if his two year trial end so a decision will be made whether to continue the last four treatments or monitor for now. So..there is always hope... we are big believers in that. You will have your ups and your downs but you can do it !!! Keep the faith and a good attitude. Hubby and I are in this together !!! I am his biggest fan and advocate... but we too sometimes butt heads...lol... he doesn’t always like what I tell him to eat so we have learned to compromise... My hubby was just shy of 61 when dx Good luck...stay strong...you have so much to live for !!!! Wanda

RE: Newly Diagnosed Esophageal - positive feedback only please

by djthx on Thu Sep 20, 2018 03:12 PM

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Hello,

I recall, after being diagnosed (Oct '12 - Stage 4 GE junction) - and all throughout the entire testing/staging process - endlessly and fruitlessly searching for any sort of hope and support.  So now here I am, alive and kicking - 6 years later, hoping to be able to offer someone the support I was not able to find.  I feel so fortunate and blessed in having - thus far - defied the statistics.  I'm also very grateful to God and the universe for having not just extended my life, but also my quality of life.  And so I'm willing to share all my experiences and knowledge with all.
I'm 53 years old, married with two kids (they're actually now adults), and consider myself to be actively battling c.  When I was diagnosed, my son was a high school and my daughter in junior high.  One of my prayers was to see my kids graduate from college.  My son graduated last year, and my daughter is in her 1st year in college.
  
Everything that I've tried or can recommend is scientifically-researched.  There is so much info on the internet.  And though some might be well meant, there's definitely a lot of baloney out there as well.  It is our responsibility to do the research, and filter out the nonsense.  Our lives literally depend on it.
If you are overweight or if you don't have any issues in maintaining your weight, then I would consider fasting.  Fasting has been used for health related reasons for over 2 thousand years.  If you google (or youtube) fasting + cancer, you will find many articles based on how fasting or calorie restriction, while on chemo, has a synergistic effect in combating malignant cells.  Furthermore, it also indicates that it helps reduce the side effects of chemo.  These articles indicate both a synergistic and a symptom-relieving benefits of fasting during chemo treatment.   I do intermittent fasting.   And had I been aware of this research-based fact, I would have done so while on chemo.
I consider myself to be actively battling c, and will continue to do so for the rest of my life.  We're in the battle of our lives; one with many fronts.  There is a must read book "The Metabolic Approach To Cancer" by Dr. Nasha Winters, who refers to these to fronts as terrains.  We must be convinced of victory.  This is vital.  Meditation, and in particular, self-hypnosis (which is mediation with an agenda) was key in helping me regain control of my right state of mind.  There undoubledly is a mind-body connection.  I meditate to help reduce stress, and to affirm that I am strong; that I am healthy.  Also, it's important to affirm and communicate to every cell in my body that I am and will remain "open for business".  This can only be accomplished on a subconscious state. 
In addition to intermittent fasting and meditation, I also exercise (I've lost about 50 pounds).  

http://www.drmirkin.com/morehealth/how-exercise-helps-to-tre

There is an excellent website that takes a look at common medications that have been shown to have anti-cancer properties.  
My #1 recommendation is LDN: 
I also take high dose Vitamin C.  It's the best anti oxidant available.  And we need to battle those free radicals, i.e., oxidative stress.
I realize that I've thrown a lot at you, but I can't hold anything back.  Every day I battle; every day I research.  And whenever I can, I share.
Take good care,
Edwin

RE: Newly Diagnosed Esophageal - positive feedback only please

by eritrea18 on Thu Sep 20, 2018 06:39 PM

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How, that is a lot of great info, thanks for taking time to inform. I hope all is well with you and I believe that all the recommendations that you stated are what make a difference other than the meds, mental attitude, faith and not listening to this nonsensical datas that are thrown in the internet without any validty and not understaning that everyone is different from their age, health condition, supprot, faith etc, that is why we see so many people beating the bogus stats.

Thanks for a well thought thread and for all your time and effort.

I just did scan after 4 rounds of chemo and got a very positive reslult with ec and liver small tumors shrank more than 50%. I will do 2 more chemo rounds and oncologist told us that she will put me in a herceptin maintenance routine, do not know what that means, so far encouraged by results.

God Bless

RE: Newly Diagnosed Esophageal - positive feedback only please

by myrbrc on Sat Sep 22, 2018 02:51 AM

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On Sep 17, 2018 4:31 PM SallyTN wrote:

I'm a 36yo mother of a young toddler, just diagnosed with stage IV (mets to liver) EC last month. I'd had horrible reflux throughout pregnancy that of course got written off as pregnancy-related. It continued to a lesser degree afterwards and I thought it was just from the weight I'd kept on, until I went to doctor with chest pain last month. I've just started IV oxaliplatin and oral xeloda a few days ago and am feeling rough. I'm at work right now (I am current breadwinner as husband is finishing graduate school) and need a PEP TALK please!

Please tell me that mentally this will get better? I'm still mourning the inability to have another child (we were in process of trying - thank God it hadn't happened yet) which seems silly as I have to fight for my life now. 

Oh and as a special "screw you" from the oxaliplatin, it is excruciatingly painful to cry right now.

Hi- my name is Bruce and I too am now Stage IV. I was diagnosed February 28, 2017. This is what I am doing and how I am handling this. 1) I take fairly heavy doses of Cannibus. I find it helps greatly with the anxiety, and it was terrific at helping to diminish the nausea and vomiting during my chemo. 2) I have found that taking Celexa ( a serotonin reuptake inhibitor) has helped "take the edge off" with regards to anxiety and depression- again- at least in my case. And 3) I have started to reach out to clinical trials at the NIH in Bethesda Maryland involving immunotherapy. My wife and I attended an Immunotherapy conference at Colimbia Prsbyterian sponsored by the Cancer Research Institute this past Saturday, and we broke out into groups to discuss our cases. I met with a man named Patrick- his telephone number is : 855-216-0127. If your oncologist hasn't already done genetic testing of your cancer, they should do this. I am being treated at Sloan here in NY. The genetic testing herer is called MSS impact studies. It helps the immunotherapy folks determine if your cancer might respond to immunotherapy. I personally believe it is the way all cancer treatment is headed (that CRI seminar in NYC confirmed that). Anyway, I hope some or all of this is helpful to you. May we both experience success in our journeys.....  Bruce 

RE: Newly Diagnosed Esophageal - positive feedback only please

by RickG1000 on Wed Jan 02, 2019 08:31 PM

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Great info, thanks for sharing

RE: Newly Diagnosed Esophageal - positive feedback only please

by Gb10998 on Thu Feb 28, 2019 07:03 PM

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I’m also getting oxy and xeloda every two weeks. Knocks me down for 3 days each time. It does become a normal part of your life and in my case it’s working. You’ve got it all in front of you and the chemo works. You’ll have a loooong life and you’ll see your child grow up!! Take joy in each day.......

RE: Newly Diagnosed Esophageal - positive feedback only please

by SallyTN on Fri Mar 01, 2019 02:04 AM

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Thanks to all of you that replied, it was so helpful (and still is) to hear about other people in the same boat. :) I’m now 6 months in and it has become kind of routine, still on the same regimen + herceptin and still working! I had a good response with shrinkage of primary and no longer able to see liver spots, last scan stable. My oncologist was excited about recent info she received at the last ASCO meeting about keytruda working for some people that are PDL1 negative (or low value) and we are thinking that might be next plan if/when this stops working. It’s scary to think about the future but I now find myself making plans for this summer and fall which I was afraid to do before. Fist bumps to everyone else dealing with this. ????
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