Burned Out...Anxious...Its a roller coaster ride

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Burned Out...Anxious...Its a roller coaster ride

by MiracleMate on Wed Jan 16, 2019 02:49 PM

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Feb 14 will mark 16 years since my husband had a distal pancreatcomy followed by radiation, chemo for 2 years to become cancer free. Then the aftermath of melanomia removal, scar tissue removal, pain blockers, and drugs and more drugs to keep him vertical and have some quality of life. Well the old stabbing pain started back last summer and we spoke with 2 oncologists, and a Dr on the origonal team who did his surgery and was told "no way" it has reoccurred. So since then he has become a guinney pig. 2 endoscopys, 2 EUS's, an ERCP, 2 colonoscopies, an upper and lower, GI. From the EUS's they did find that he has a dense active abnormal mass in the pancreatic bed located between 2 arteries yet they still did this complete workup on his GI and binary tracts to find 4 precancerous palaps so I gues that wasnt a waste of time. His pain meds have been increased to help him deal with this horrific pain which is good but the mass in his pancreas that is causing the horrific pain has been put on the back burner. Also meanwile, he still has blood and coffee grounds in his stool, and his blood count is down to around 7 from loss of blood and he has lost over 30 pounds now. I finally reached out after reading about the nano knife procedure and got an appt with an Inerventional radiologist to see if he is a candidate for this procedure but couldnt get him in until the end of Feb. Also, I finally reached out to the Oncologist to get a follow up to see what he thinks of my choices because he appears to be at a lost. My husband's condition is "unknown territory", there aren't any medical books or journal guidelines that this Dr. can follow so he's at a stump. Gosh, I miss those old timey Drs who explored the unknown possiblities and would just say lets go for it! Anyway, I'm burned out, tired, anxious, depressed, and horrible to be around. I need someone to talk to that has a clue as to what I'm talking about. My husband of 23 years is a walking miracle but I'm running out of juice. Can anyone help out there or suggest someone I can talk to?

RE: Burned Out...Anxious...Its a roller coaster ride

by kak123 on Tue Jan 29, 2019 08:21 PM

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I am weary and feel like we are being lied to. We have been going through this for just over a year, I can't imagine 16 years. My husband has inoperable base of tongue cancer with mets to nodes. He finished his radiation and chemo june of 2018. his first pet scan showed a mass in the lung so a biopsy showed nothing significant and to wait and watch. his 2nd pet showed lung mass was gone but he has a new one near his original cancer site. His oncologists want nothing to do with him and his ENT says it needs to be biospsied but he does not want to muck it up and is sending us to UCI to a specialst. we will see him tomorrow. Im scared my husband is in denial. looks like the only hope for him would be to have his tongue removed and the very least. I get your roller coaster ride and anxiety. Hopefully  this new Dr. of ours will be clear and consise.

RE: Burned Out...Anxious...Its a roller coaster ride

by karimzahra on Fri Feb 22, 2019 06:31 AM

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Firstly I am so sorry for you, your husband and everyone out there who is suffering from this awful, frightening disease. I have two family members who both have different types of stage 4 cancer. I am not a medical professional so would not even conider giving uninformed advice about treatment. People who come on medical forums and who make stupid statements such as “first of all know that cancer cells feed off sugar so stop eating sugar” are not helpful. All our cells need glucose to survive and eating more or less sugar will not increase or decrease the progress of cancer. I might give some advice in relation to getting the best possible medical treatment. 1. Do lots of research into what treatments are available BEFORE you see your consultant 2. Make notes at all meetings then check out advice given online 3. Before seeing your cancer consultant check him/her out online. The NHS is cash strapped and have been known to use under qualified physicians. If you don’t think you are going to see the top consultant for your cancer in town ask to see him and be prepared to go private if you can afford it. 4. Don’t be in awe of the consultant. Treat him with respect but make him answer all the questions you have written down. If he thinks you are asking too many questions explain that you do need answers and you are worried. That someone’s life is at stake. 5. Take control. Always make sure someone apart from the patient attends any consultation (a close friend or family member who doesn’t mind asking questions and who will make notes.) ABOVE ALL KEEP IN MIND THAT IN THE NHS YOU OFTEN HAVE TO TAKE A NO NONSENSE APPROACH TO GET THE BEST TREATMENT. STAFF ARE STRETCHED TO THE LIMIT WHICH ISNT THEIR FAULT. SO IT IS A BIT LIKE PUSHING YOURSELF FORWARD AND MAKING IT CLEAR THAT YOU WANT THE BEST POSSIBLE TREATMENT AND WON’T ACCEPT LESS. SAD BUT TRUE.
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