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riverak's Message Board Messages

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RE: Lost Cause

by riverak - June 21 at 7:16 PM

On Jun 21, 2019 5:24 PM PFFlyer wrote:

We have just been told that my husband has two months to live.  He and I, have battled primary liver cancer since February of 2017.  I won't go into everything that has gone on/and or happened but it looks like he is losing this battle.  I just have to share what happened recently at one of his oncology appointments.  In discussing, the prognosis, I expressed that we will continue to fight.  The doctor looked at me and said Mrs.-----, you need to just give up and consider your husband's comfort.  My husband who is an extremely positive person and has managed this disease with much courage and hope, was deflated.  He did not want to know that he only has two months to live, he prefers to live each day with a positive approach.  He's not stupid, he just doesn't want those words to be in his mind every day for the rest of his life.  His affairs are in order so there is nothing left to prepare. I am so angry with these doctors that they believe every patient needs to be told to their face that they are dying. This is not my husband's personality!  I've been married to him for 51 years.  I asked the doctor to share with me what to expect and though all the paperwork gives me the authority to discuss all aspects of my husband's medical, the doctor refused.  He would only talk to the both of us.  Angry, Angry, Angry!

We are so very sorry to hear about this challenge that your husband is facing and would like to provide some guidance to you in this time of need. One of our experienced Patient Advocates is available now to assist you at 847-342-6493. Please feel free to reach out anytime.

Looking forward to helping you,

Karen Rivera
Cancer Treatment Centers of America
Community Engagement and Outreach Team

On Jun 20, 2019 4:24 PM Chris3455 wrote:

Hi All,

My husband is supposed to have 27 radiation treatments to his esophagus.  They have only suggested this recently. He has had 11 treatments so far. But, the radiation has caused him to have such severe nausea that he has had to skip at least 5 treatments. Has anyone had this response? I mean every hour he has been sick. 

Also, he is in his 3rd year of this disease and has been on Keytruda for the last 2 years.  They say because he still has mets in his lymph nodes and kidney they will not operate.

He was working and going to job sites before radiation and now he can barely get out of his lazy boy.  I'm so worried about him.  He is supposed to go get keytruda and radiation today, but i'm afraid he might have to cancel again! 

Thank you, 

Marcia 

Marcia,

We are so very sorry to hear about this challenge that your husband is having and would like to provide some guidance to you in this time of need. Have you considered getting another opinion for other treatment options and supportive therapies?  One of our experienced Patient Advocates is available now to assist you at 847-342-6493. Please feel free to reach out anytime.

Looking forward to helping you,
Karen Rivera
CTCA Community Engagement and Outreach Team

On Jun 19, 2019 12:44 AM laurat_112 wrote:

Hi everyone,

My mom was diagnosed at the end of 2017 with Stage IIb Pancreatic Cancer, and has been fighting ever since.  In March of this year we got the news that the cancer had spread to the liver and my mom, the fighter she is, refused to give up.  She has been enrolled in a clincial trial since April and is doing a combo of Gema/Non-paxil therapy along with the study drug.  Her blood cells (red and white) do not recover well after treatments and even with the lowered chemo doses, they are probably going to pull her off the trial this week, Dr says they can't give her anymore boosters and the chemo seems to be doing more harm than good.  She did a total of 3 treatments of the chemo for the trial, I believe she should be on treatment # 9 by now.

She still wants to fight but does not want anymore chemo.  I'm not sure where she should go from here and she was told by her doctors that chemo is the ONLY treatment available for her.  I know that isn't true, but she wants me to start researching and I have no idea where to start.  She also has ascetis and severe swelling in her legs.  Any advise would be awesome and much appreciated.  

Thanks for listening :) 

We are so very sorry to hear about this challenge your Mom is having with her diagnosis and would like to provide some guidance to you in this time of need. One of our experienced Patient Advocates is available now to assist you at 847-342-6493. Please feel free to reach out anytime.

Looking forward to helping you,
Karen Rivera
CTCA Community Engagement and Outreach Team

RE: Advice on Bile Duct Cancer

by riverak - June 12 at 3:51 PM

On Jun 12, 2019 2:57 PM Holder3 wrote:

Hello, My beautiful wife of 25+ years was diagnosed with advanced statge 4 Bile Duct Cancer 2 weeks ago and i am lost, scard and I need advice. If anyone would please help me with some questions I have I would be greatful. History of my wife, she will be 49 june 18 and has never been admitted to the hospital since the birth of our child 19+ years ago. She is fit, does not drink, never smoked and has never had any ailment that would harm the liver. we have been told its advanced stage 4, but they will give her a chance to fight this. What can I expect ? what can I do to help ? They have not given us a time line, but I feel it is not good. She has started to lose weight, holding large amounts of fluid and is starting to become weak. Her pain is not that bad according to her its just the discomfort. I think she does not want my daughter and I to know how bad the pain is. Her mind is as Sharp as ever. Please help if you can. Thank You and God Bless Jody

Jody,

We are so very sorry to hear about this challenge and would like to provide some guidance to you in this time of need. One of our experienced Patient Advocates is available now to assist you at 847-342-6493. Please feel free to reach out anytime.

Looking forward to helping you,
Karen Rivera
CTCA Community Engagement and Outreach Team

RE: Renal Cancer Now In Liver

by riverak - June 11 at 7:01 PM

On May 28, 2019 7:54 PM Minimartin wrote:

I had my right kidney removed in 2016 because if a 6.2 cenitmeter mass enveloping the kidney. I had no symptoms prior to suddenly feeling that I could not take a deep breath. It was 20% RCC & 80% a rare sarcomatoid that didn't respond well to trials or treatments. It had already spread to both lungs. I began votrient and couldn't handle it. Moved on to Opdivo and my cancer went into remission after four months. However, my immune system turned on my body and destroyed my thyroid, pancreas (Type 1 diabetic now) and gave me RA. All my scans have been clear until now. I had two spots in my liver and when I had another scan two weeks later, have more spots. Am now anemic. Biopsies show unusual results. Slides going to Boston for genetic testing. In meantime, going on Avelumab (Bavencio) and Axitinib. Anyone have any experience with these drugs? Also, anyone ever try apricot kernals and broccoli sprouts? I am curious about anything natural used. Thank you. 

We are so very sorry to hear about this challenge and would like to provide some guidance to you. One of our experienced Patient Advocates is available now to assist you at 847-342-6493. Please feel free to reach out anytime to discuss.

Looking forward to helping you,
Karen Rivera
CTCA Community Engagement and Outreach Team

RE: Pancreatic cancer!

by riverak - June 11 at 4:58 PM

On Jun 11, 2019 4:21 AM Luckydave58 wrote:

I went to the emergency room 3 weeks ago as i thought id had the flu! Little did i know that after a ct scan of my stomach i had a softball size tumor over my pancreas this has really shocked me as I wasnt expecting to be diagnosed with cancer, they put a stent in my duct of my pancreas so it would take the yellow away in my eyes and skin! Can someone tell me what im in for? I would appreciate your input! Thanks Dave

Dave,

We are so very sorry to hear about this challenge and would like to provide some guidance to you in this time of need. One of our experienced Patient Advocates is available now to assist you at 847-342-6493. Please feel free to reach out anytime.

Looking forward to helping you,
Karen Rivera
CTCA Community Engagement and Outreach Team

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About riverak

Caregiver
Bile Duct Cancer, Bladder Cancer, Bone Cancer, Brain Cancer, Breast Cancer, Cervical Cancer, Colon Cancer, Endometrial Cancer, Esophageal Cancer, Ewings Sarcoma, Fallopian Cancer, Gallbladder Cancer, Gynecologic Cancer, Head and Neck Cancer, Hodgkins Disease, Jaw Cancer, Kidney Cancer, Laryngeal Cancer, Leukemia, Leukemia - (ALL), Leukemia - (AML), Leukemia - (CLL), Leukemia - (CML), Liver Cancer, Lung Cancer, Lung Cancer - Adenocarcinoma, Lung Cancer - Non-Small Cell, Lung Cancer - Oat Cell, Lung Cancer - Small Cell, Lung Cancer - Squamous Cell, Lymphoma, Melanoma, Multiple Myeloma, Nasal Cavity Cancer, Non-Hodgkins Lymphoma, Oral Cancer, Osteosarcoma, Other Cancer, Ovarian Cancer, Pancreatic Cancer, Pharyngeal Cancer, Prostate Cancer, Rectal Cancer, Renal Cell Cancer, Salivary Gland Cancer, Skin Cancer, Skin Cancer - Basal Cell, Skin Cancer - Squamous Cell, Squamous Cell Carcinoma, Stomach Cancer, Testicular Cancer, Throat Cancer, Thyroid Cancer, Tongue Cancer, Tonsils Cancer, Uterine Cancer, Vaginal Cancer, Vulvar Cancer
Cancer Diagnosis, Cancer Treatments, Chemotherapy, Conventional Treatments, Diagnostic Imaging, Insurance, Naturopathic Medicine, Photodynamic Therapy, Radiation, Side Effects, Support, Surgery

I have had the honor of helping patients and families over the last 13 years working as a Patient Advocate for CTCA. I can help with deciding about getting another opinion, answering questions about our evaluation process, scheduling an appointment at one of regional locations and helping to make the intake process a smooth one. Our Mother Standard of Care is unique and every patient deserves to be treated with the care and compassion you would give to a family member.

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